My Boy's

End of Summer Update

2009-09-09T12:32:00.012-04:00

After a month of no update...I have much to say. My computer crashed and had to be sent back to HP for repair...so I have a valid excuse. The boys have been enjoying the summer. I never updated after Lukey's alarming ride to Georgetown in an ambulance and week long stay which included removing the central line from his chest. He had an E-coli infection in his line and he was a very sick little boy. He recovered quickly, like the champ he is and has thoroughly enjoyed being able to take baths and swim in the pool. Levi and Lukey have spent lots of hours at the pool playing in the water and having a great time. It's been nice for me too, to get out of the house and breathe in some fresh air. Sarah, my sister-in-law, has been my constant companion at the pool. The babies have been growing and growing. They are doing really well. They eat together, sleep together (most of the time), and cry together (not fun). Yes, when one crys..the other starts and then that's when I also want to cry! Two babies crying in tandem with another one hanging on your leg wanting to be held can send you into a tail spin. Luckily we have help. Sarah has been with us for more than two months and will be here one more month. My in-laws were here for a month and now another one of Ben's aunts will be coming from Sri Lanka for 6 months! I would have gone insane if it had not been for all the help.

The babies are getting so big and they are so cute. A few members of the family...I won't mention any names...still can't tell them apart. I think they look very different, but I have to admit at first glance I have even called them by the wrong name, but I have never put them in the wrong cribs...hahaaa you know who you are!! Levi and Lukey have grown very close. Lukey will do whatever Levi is doing. Cardboard boxes from Costco are the best gifts that they could ever get. They quickly become trains, cars, houses, and here a space shuttle. Levi let Lukey be the co-captain on this space shuttle Discoverer. Sometimes they fight...actually a lot. Lukey is a tough little guy, but Levi forgets that he is little sometimes. They are still the best of friends. We took them to the Luray Caverns a few weeks ago. It was a truly amazing place. Levi really enjoyed the listening tour and learned a lot. Ben had to carry Lukey around most of the time which included the 70 stairs up and down with the stroller...no elevators under ground :) We left the babies at home that day and had a picnic lunch outside before Levi and Ben headed into the garden maze. It was nice to get out and away after being inside with baby duty all the time. I think we were all approaching burn out and needed a day out. Other than going to the pool and the library, our summer was spent tending to babies. Ben and I did get a lot of Friday night date nights this summer. We went out to eat, saw some chick flicks, and went to the opera. We found that we were so tired when we went out it was difficult to stay awake! Hopefully next summer we will be able to take some more trips, maybe to the beach. I think we will need a travel buddy for a while. Lukey is not used to traveling in the car for a long period of time and really dislikes being in his seat that long. He lets everyone know he is upset about it too! It can make for a very long ride. Speaking of Lukey...he had more follow-up scans and hearing tests done. His hearing has stayed the same...thank God...his CT scan came back clear...thank GOD...and his blood tests all looked good. The only thing that is still needing some attention is his kidneys. He had another GFR scan and the result was even lower than the last ones. It is still in the normal range, but trending down. It means his kidney function is still not back to normal...due to the chemo and the Prograf he takes twice a day. He still has the ng tube as well. Next Monday we go to Georgetown for his appt and we will see what they think about it. Meanwhile....Levi started school!! His first day of Kindergarten was Tuesday. We walked him to the bus stop in the morning, which is a block down from the house. He gets dropped off at our driveway!! So nice...I hear the bus coming and I step out the door to get him.

Walking to the bus stop with mommy, daddy, and Lukey

Waiting for the bus

Getting off the bus at home!

Levi and Jacob

It was so sad to see my little guy get on the bus by himself and leave me standing there on the corner watching him go. I just pray a covering over him. It seems just yesterday I was having sleepless nights with him. I have three more to send off to school one day...sigh...

Last, but not least we are doing a walk in DC for CureSearch, an organization for pediatric cancer research. We have formed a team called "More Than Conquerors". I will be posting a link on this blog and again on my Facebook. If you want to join our team, you can do so on the site or join by doing a virtual walk. Any money raised is going for helping all the children like Lukey. I'll post more info in the next few days. Now my hands are tired and Levi is hounding me to use my computer...I can't take it anymore :) Thanks for sticking with me during my times of no updates. Happy Autumn to all!!

A year ago today - when our world was turned upside down!

2009-08-05T05:53:00.002-04:00

A year ago today Lukey had a routine physical and subsequently diagnosed Hepatoblastoma. Please see below the post from last year...

Sunday, August 10, 2008

Update on Luke
As most of you know, last Tuesday I took Luke to his 6 month checkup. While getting his routine checkup, his pediatrician noticed a mass on his right side. We were immediately sent to the hospital to get some xrays and an ultrasound. I was concerned, but at the time we thought it might be his bowels or something swollen. The Radiologist came in the ultrasound room and said something that has changed our lives forever. He told us he thought Luke had a large tumor on his liver. We were then sent to Inova Fairfax Hospital. After a battery of tests and scans we received the news that Luke has a form of liver cancer called Hepatoblastoma. On Thursday he had a biopsy and a central line placed in his chest for chemotherapy. He has been having some complications due to the surgery, but is a strong little boy. We did find out that the cancer has not spread to any other tissues or the bones, it is only in the liver and we THANK GOD for that! Last night he started his first session of chemotherapy. It went well and we are believing that God will spare him from side effects. Tomorrow he receives two more chemotherapy drugs. This will go on for the next 12-16 weeks. We are praying that God reduces the tumor sooner than that. Ben and I can feel the strength of your prayers. Please continue to pray for Luke and also include Levi in your prayers, he has been without Mom and Dad and is not sure what is going on. We are just trying to go one day at a time. Thinking ahead too much is overwhelming. Please pray for strength for the day. Luke is in Gods hands, which are the best hands to be in. Things to pray for...Healing in Luke's body, wisdom to make the right decisions for the Dr.'s and nurses taking care of Luke, strength for our family, reduced time on chemotherapy, freedom from side effects of chemotherapy, comfort and strength for Levi and Ben and I. We are praising God through this storm and know we will come out of it stronger.

Lukey says Farewell to his favorite Dr.

2009-06-24T15:57:00.010-04:00

Dr. Weil, Benjamin (her son), and Lukey

A very fond farewell to Dr. Weil. Lukey's oncologist is leaving Children's and heading to NIH. We are going to miss her. On August 5, 2008, we were told Lukey had a tumor in his liver. Dr. Weil was the Dr that met us when we first showed up at the hospital in a state of shock and fear. I am totally choking up as I write this...it is hard going back and remembering. She has been Lukey's primary oncologist since day 1. Dr. Weil always made herself available to answer our many thousands of questions no matter the time or day. Though she is leaving Children's...she will never be able to get away from us :) We know her cell phone number...hahahaa. We are definitely going to miss her, but intend on keeping her updated on Lukey's progress. We are just waiting for the AFP to come back to see if the line can be removed. I hope everyone is having a wonderful summer so far...I hope to get out to enjoy it somewhat this year.

Dr. Weil and Lukey

Lukey walking!!! He is so proud of himself

Lukey loves the babies...loves to poke them in the eyes.

Who's that? He looks like me!

Introducing Joshua Liam and Jacob Lael

2009-06-17T13:01:00.011-04:00

Our boys were born May 29th at 11:10pm and 11:11pm. Joshua was the bigger of the two at 6 lbs 1oz and Jacob weighed 5lbs 9 oz.

Proud Daddy!!

Exhausted Mommy!

Joshua Liam Fernando

Jacob Lael Fernando

Heading Home

Big brother Levi

My two angels

Nana and her new grandsons

Having twins makes you remember the days of having one newborn and laughing about how hard we thought it was...hahaha. All they do is eat and cry. Some days I don't have time to even eat. I have started drinking caffeine again after almost two years of no coffee and such. It is necessary for survival. I can't believe the amount of laundry we do around here. There is no way I would be able to keep up right now without Mercy here. She has been a huge help. I took the twins to the Dr. on Monday...by myself...yeah I totally ROCK!! The double stroller is like pushing a stretch limo...you really have no idea of it's length until you try getting into elevators and through doors. The boys are growing well...Jacob has actually passed Joshua in weight, which is funny because he was the smaller of the two.

I went to the Dr. yesterday for a incision check and follow up. He told the path lab results came back on the placenta and the boys are actually identical twins. Initially they said fraternal. I don't know who to believe...I guess we'll see. They do look identical now and they both have B+ blood types which I thought was interesting. They do have extreme cuteness in common. We are trying very hard to just enjoy these days...they go by so fast and these are our last ones. We might complain now about losing sleep now...what about when they are teenagers...we will long for the days when they just eat and sleep and poop.

Lukey will have another blood test this week and his AFP results will determine the removal of the central line. They have taken him off the steroids now...YAY!! He is also off the prevacid...two more meds down... and about four or five more to go. The big news this week is...Lukey has started walking!!!! He just laughs the whole time too...he tries to go really fast...like he wants to run. He starts speech therapy next week and will have a lot of follow up scan in the next couple of months. We are still trying to get him to drink more. I am supposed to put his new ng tube in myself...they gave me a stethoscope at Georgetown and showed me what to listen for when testing the tube....Lord have mercy...I can't wait to be done with all this. I'll try to get some pictures of Lukey walking to post.

Levi had his 5th birthday and graduated from Pre-K all on the same day!! It seems like not long ago I was feeding and rocking him. We are truly blessed with all these boys.

Our Updates

2009-05-28T17:07:00.004-04:00

We are still awaiting the arrival of the twins. 37 weeks and still gooooooing. My ability to get around has seriously deteriorated. I should not be driving...but I still am. My mom will fly in tomorrow which will give me some comfort...first time she will actually make it in time for the birth, unless I go into labor before 6 pm tomorrow...which I would welcome. At the last US the babies were measuring 6lbs 10oz and 6lbs 6 oz. I feel every one of those ounces.

My very talented friend Amanda took my belly pics. She did a fabulous job.

Lukey's last AFP result was an amazing 4!!!! They took another one recently and we should get the result at his next appt on the 3rd. If it stays the same we can look into getting his central line out. They also want to do another CT scan soon as a follow-up. He is doing so well though. We still have issues with his drinking, but I finally found a cup that he likes and he is up to about 12 oz a day from a cup. Maybe I should just start feeding him dry, salty foods :) He is only on the feeding tube at night now and we just run water with baking soda. He is off the special formula because he is taking in enough calories from food. The baking soda has something to do with his kidneys, which they are keeping a close eye on. The chemo and his current meds are very harsh on the kidneys, so they hope they will recover on their own. That's why his fluid intake it so vitally important. He is crawling and cruising now. I hope he starts walking soon. He is so cute with is spiky hair. It's growing back in...straight up in the air..hahaa. Overall his health is very good and he is a happy boy. We moved him in with Levi, so we could give the twins his room. So far it has worked out well. However, the other night neither of them wanted to go to sleep and I walked in there and Levi was whispering something to Lukey and Lukey was sitting up in his crib giggling. It was actually a precious sight....brothers.

Levi is about to graduate from Pre-K. I am sad that I will miss it. He graduates on his birthday June 5th. Tonight is his open house at his new "BIG" school. Ben will take him and the staff takes them for a tour and a show in the gym and then snacks, and a bus ride around the neighborhood to get them used to riding. I am sad to miss this also. He is getting so big before my eyes. I was worried how he would feel about having to share his room with Lukey, but he seems to like it. For the most part he is very protective of Lukey, but sometimes a little jealous. Lukey loves to hang over the tub while Levi is taking a bath and throw things in. He laughs and laughs. I can't wait until he can get in the bath and splash around too. Hopefully he'll get his line out soon and his ng tube.

Well the longer I sit here the bigger my feet get. Ginormous, as Levi says. I will update this with baby pictures soon!!! My c section is scheduled for June 2nd unless the Lord has mercy on me and I go in sooner. Please Lord...mercy.

A New Season

2009-05-04T21:51:00.010-04:00

Well everything has been going good here at the Fernando house. Lukey is doing well. We are still working on the drinking, but he has started cruising along the furniture and just being adorable! His personality is definitely coming out...he loves to imitate big brother Levi, which is not always good. We will find out his AFP result on Wednesday and I think a lot of decisions will be made from there. We pray it all goes well and it has come down. I also go for another US on Wednesday. I hope they are over 5 lbs now and I can stop worrying and let them come any time. I really do want them out...I just don't know what to do after that :) I can barely walk and breathe...and sleep...forget it. I had a wonderful baby shower from the ladies in our church. It was so nice and I just felt so overwhelmed by it all. We had a great time...and I ate lots of cake.

Chelsea enjoying the sun

I was waiting for this tree to bloom...to me it means a new season in our lives.

Today when I went to pick Levi up from school, there was a big double stroller with bows on it and all the kids and their moms were waiting next to it. I almost lost it, but managed to just get watery...these hormones have me so confused. It was so thoughtful and wonderful...again I was overwhelmed! So many have given us items that we might need. We received the cribs, swings, bouncers, clothes, and so many beautiful gifts for the boys. We are blessed indeed!!

My little guys

This weekend will come the rearranging of the house. The twins will take Lukey's room so, where to put Lukey. I want him in with Levi, but with the feeding pump and all the times I go in at night I'm afraid it might wake Levi. Ben wants to move the office and put him in here...I just don't know.

The Fernando House

We are planning on banking the twins cord blood, and the wonderful news is that they are going to do it for free. Through the Sibling Connection, because of Lukey's diagnosis we qualify for it. I think I would have done it anyways, but this is just the best news. I'll continue to keep you updated on the twins status now too. Let's see...Levi is doing great. He really loves to ride his bike and play with the neighbors. I am reading a very good book called "Wild Things...The Art of Nurturing Boys". It is an excellent book if you have boys. It has opened my eyes to why Levi does some of the things he does. He is normal after all :)

Ben's aunt pushing Lukey and Levi riding alongside.

I think we are all about to enter a new part of this journey. I feel like we walked through the valley of the shadow of death, through the hills and valleys and now we headed for something new. Life with twins...four boys...maybe we are headed back to that dark valley...just kidding. We are very excited and look forward to the future and all it holds for us. If we survive the first year...we are doing gooooood!

The Belly

I will update again after we find out about Lukey's AFP. I just know it's all going to be alright. He sees the feeding team at Children's in DC this month, so hopefully we can resolve this drinking issue and get him off the feeding tube. He is five months out from transplant tomorrow..HOORAY!! God has been so good.

Spring Has Sprung

2009-04-17T10:32:00.002-04:00

I have been waiting eagerly for the cherry tree outside my bedroom window to blossom. It was just beautiful this year! That was to be my landmark of when things would start to get better and we could start new and fresh. Things have gotten so much better. Lukey is doing great. He is eating with a healthy little appetite. We are still working on the drinking though. I got this stuff called Thick-It that thickens liquids and food for people with swallowing disorders or people who are kinda learning it all over again. I can't say that it works yet, but I'll let you know how it goes. His MRI came back clear...THANK GOD!!! The only thing they are following closely is the AFP. It had come down to 40, so they want to see if it continues to come down or if it will keep fluctuating. We are also starting him on a new oral medicine instead of the once a month infusions he gets, so hopefully he will get the central line removed soon. I would love for him to get that out before the babies come.
This beautiful weather really lifts my spirits. Yesterday we took Lukey and Levi out for a walk. Levi rode his bike and Lukey rode in his little red car. He was really enjoying it. I stayed outside for about 2 hours and my back was killing me. Here's to another day of ignoring Dr's orders! HEHEE. She wasn't absolutely specific about that. Lukeys appointments have become fewer as well, which is great. He is now about every two weeks with the oncologist and every four weeks for transplant. It's really nice not to have to drive to Georgetown so much...I'm beginning to despise the place. One day we'll go for fun and maybe I'll change my mind. Lukeys hair is really growing in now and he is crawling and pulling up on his own. He seems to be catching up pretty quickly.
The twins seem to be doing really well. I had that one trip to the hospital because contractions were two minutes apart. They started an IV and hydrated me and they eventually stopped. I got to go home about 3-4 hours after I got there. I have been drinking so much water now to keep that from happening again...it's difficult with a bladder the size of a kiwi. She told me no more picking up Lukey and to stay off my feet as much as possible. I felt like inviting her over for a day to see what it was that she was asking me to do. Hmmm...don't pick-up my baby who needs special attention. So when he crys and hold his arms up at me..I should just walk away? I understand her reasoning...she did not understand mine. Typical. We are very blessed to have Ben's aunt with us who does a great job with Lukey. I'm just a tad overly protective of him and just can't help myself. I usually sit on the floor now and let him come to me, so I can hold him. Auntie Mercy will come and put him on my lap so I can put him down for naps. It's still not the same, but I'm not ready for these little guys to come out yet. Physically I'm ready....get em' out!!! I'm not ready in any other way! Fraternal twins...I wonder what they will look like...for all of you who are still curious about our L names...we decided to go with Jacob and Joshua. We can call them Josh and Jake...which I will change to Joshy and Jakey and they will hate me for it later on.
I have some pictures to post, but my camera is downstairs and I don't feel like trudging up and down right now :) I have some BIG belly pics too. I have had some unwanted rubbing on the belly lately. Twice at Levi's dentist appointment and once in the grocery store. I don't want to have to resort to violence, but it might get ugly if it doesn't stop. I'll post the pics soon and keep you updated on the AFP levels. I have been a bad girl about updating lately and I blame it entirely on Facebook. I hope everyone had a blessed Easter and as always we thank you all for your continued prayers and support.

Results

2009-03-27T14:12:00.004-04:00

We finished the scans....well we thought we did. Yesterday we met with Luke's oncologist about all the results of his tests. She showed us his CT scans and went over the report with us. There is an area of question in the liver (not for Ben and I, we know he is healed). The radiologist seems to think it is scar tissue, but since his AFP is still elevated they want to make absolute sure that there was no "spillage" of cancer cells into that area. Luke will have a PET scan next week and an MRI the following week. We plan on pulling his NG tube before his scan to see how he does on his own...kinda cold turkey. If he doesn't do well drinking , he will get the tube put back in while he is under sedation. Then maybe we will try it again the following week before his MRI. We just need to be very sure we protect his kidneys. If he won't drink, he has to be on the tube.
Lukey has a little cold right now, but he is doing really well otherwise. I think Levi is suffering from Spring fever. He is bouncing off the walls and making my head spin. He desperately needs some outdoor activity to be in everyday...like cross country running!!! I had another OB appt last week. The boys are growing well, which is obvious by the size of my belly, and their heartbeats sound good and strong. I have another US next week to get their measurements. My cervix is holding up nicely, just in case you wanted to know. I have entered into the Hot dog and bologna phase of my pregnancy. See I don't go by weeks..I go by cravings...they are always the same. Indian food followed by peanut butter and jelly sandwiches followed by hot dogs and then on to bologna sandwiches. The new one I've been having lately is Hostess cherry pie, which I hadn't had for at least 10-15 years. Weird..and totally not healthy. I also eat a lot of raw veggies, but I do love a hot dog for lunch :) I have spent waaaay too much time talking about food. I feel the urgency to get things in order now...I am also in the nesting phase. Why is this so complicated?
Now I need to take Levi outside to run around and burn some energy. I will keep this updated about the PET scan results as soon as we receive them. We are only expecting good reports!!!

Updates and Follow-ups

2009-03-19T10:56:00.007-04:00

I know it's been awhile since I've updated. I've been in a bit of a funk. I think it's the pregnancy hormones, and exhaustion. Those two combined are the makings of one mean mama...hahaaa. No really. We have been busy with all of Lukeys follow-up appts. He still has to have his CT scans next Tuesday.

Here's a Praise Report! He had his hearing tests on Tuesday. He had to be sedated so they could get a real accurate reading. The Audiologist who has been doing them since day 1 was a little perplexed. She told us "well I can't give you an explanation, but his hearing is better now than it was before." Before they told us he had lost all his high frequency hearing. Now there is just a very mild loss in the highest frequency. God is so good and so faithful.

I had an ECHO done on the twins yesterday. They wanted to check their hearts because of the things I was exposed to before I knew I was pregnant. Everything looks just fine. They are moving around A LOT! Sometimes they take my breath away when they both get to going in there. Tasks are definitely getting more difficult...and my legs are starting to look like a Rand McNally map. Oh the joys of pregnancy. Ben has ordered a multitude of books about having multiples and raising twins and raising all boys...now all I need is time to read them :0)

Last night we took Levi to the circus at the Verizon Center in D.C. We were given the tickets by Special Love, which is an organization that does camps and things for pediatric cancer patients and their siblings. It was a great night. We got there for the pre-show at 6...which was a little loud and busy for me...I was starting to feel confused..so I had to step out of the arena and away. For the kids it was awesome...they got to be down on the floor with the clowns and performers and everything. It was a show like I have never seen before. I remember going to the circus as a kid and it was in an actual tent. There were clowns and a few animals and performers, but this was like a Vegas show for kids. Originally we were going to take Lukey, but it's a good thing we did not. We left home at 4 in the afternoon and returned at 11 at night. He would not have liked it, so Levi was able to take his little friend Zoey (who he always calls Zoby). They were so cute...they had a good time, but were extremely tired towards the end. I think we all ate too many hot dogs and pop corn...well at least I did.

Zoey and Levi

Ben wearing his favorite hat

Levi was not so thrilled to be trying on costumes.

Down on the arena floor watching some acts.

Levi and his sword.

It was really great to be able to take Levi out where he feels like he's special. He loves his baby brother, but feels jealous sometimes that Lukey gets so much attention. He really enjoyed being out with mommy and daddy. Even though it was past my bedtime and my feet were starting to swell inside my shoes, it was fun. We are so thankful to have no appts until Monday. A nice break. I asked his oncologist when he can get his central line out and she said if his scans all come back clear and his AFP goes down and stays down then he will get it out. He just had another AFP drawn on Tuesday..please pray with us that the results are low..under 10. I'll let you all know how his CT scan goes. Thanks for sticking by us and holding our family up in prayer. Hope everyone has a blessed weekend!

Chemo is OVER!!!!

2009-03-05T09:35:00.006-05:00

After that last hospital visit Lukey has been doing great. His body is still recovering from the chemo and will be for a little while. We are about to enter another few weeks of tests, tests, tests. This is always fun (sarcasm). He will have his ct scans under anesthesia, his gfr (kidney function) scan at Childrens in DC (a nightmare), a chest xray, an ECHO and EKG, and an OAE (hearing test). He will have the in depth hearing test in April now since we could not make it to the hospital in time for his last scheduled one. Thanks to Dulles Greenway owners who collect all the tolls and don't plow the roads....anyways I could get heartburn thinking about that.

Yesterday a physical therapist and a speech pathologist came to the house to do an assessment of Luke. He was so excited to have more people to play with. They were very surprised at his strength and ability. They said he has about a 25% delay in gross motor skills and due to the hearing loss he automatically qualifies for speech therapy, although she was testing his hearing with high frequency sounds and he turned his head towards her every time. I think his hearing is going to be just fine. He needs to work on transitioning into sitting up by himself, crawling, and pulling up. In their opinion he is almost right on track. His social-emotional and spatial skills are all on target. I will meet with them again next week for a full report and recommendations, then if we choose they will continue to come and work with him. He has come a long way and I know he will catch up really fast.

Meanwhile, the oncologist is paying pretty close attention to his AFP. The last one was 67. They just did another one, so I can't wait to see what that one reads. I'm not going to let them scare me with AFP markers. I KNOW HE IS HEALED!

My brother was finally able to go back home. One day late because of the snow storm (that's what they're calling it) I drove is snow deeper than that when I was 16...geez...don't get me started. They said the liver/stomach will resolve itself. They gave him some meds to relax his esophagus and keep it from spasming. He said he is feeling better, I hope this resolves itself very soon. It was nice to see him again, although he was missing his family so much. Lukey has a very special attachment to Uncle Michael. Any time he sees him he just grins and grins...we think they have a divine connection.

Uncle Michael and Levi

Uncle Michael and his buddies

We are actively trying to get Lukey off the feeding tube. He has started eating, he just won't drink. I would love to just go cold turkey and pull the tube. That would put his kidneys at risk. He needs a lot of hydration because of the Prograf, it is very hard on the kidneys. He will always be on it, so he will always need to drink a lot of fluids. Right now they have him off his feeds for 10 hrs a day, but I have to give him a bunch of water every 2 hrs..it is truly a pain. I either have to run it through the tube or push it with a syringe through the tube. Please pray he starts taking fluid by mouth.

I am eagerly awaiting the arrival of Spring! I am so done with the cold. It will be nice to get outside and go places..well a little...before the boys come. Then I guess I will hole up again inside until Fall. I had always said I would NEVER drive a minivan. Then last summer I test drove the Toyota Sienna...what a God send that car has been. I am so glad we got it, because now we are about to fill it up. I still can't get my head around this completely. I have another ultrasound next week to determine...some words that I can't remember. I think it's to determine whether they are in separate sacs or sharing a sac. I have been feeling very sore and stretched lately. I know I have been doing too much. I don't want to be put on bed rest..so I better chill a bit.

Levi enjoys the snow

Though we have finished the chemo, we know we are far from being in the clear. We continue to lift Lukey up in prayer everyday. We are praying for all the scans to come back clear, his AFP to drop below 10 and stay below, his liver functions to remain normal, and for the feeding tube to come out.

Lukey loves to bang on the guitar

There have been days that I could not even find the words to pray, I was just too exhausted and overwhelmed...some days all I could utter was help us Jesus. I know that so many of you have lifted us up in our lowest and weakest times, and for that I am eternally grateful.

Chemo milestone!! And Hospital Stay

2009-02-26T07:59:00.004-05:00

Quick update: last Tuesday Lukey completed the most brutal chemo round of this journey! It has been very tough on his body. He was visibly sick throughout and with transplant meds, it was an uphill task to keep the balance (chemo, prograf, etc). Anyway, we thank God for giving strength to Lukey to endure 6 rounds of "bad medicine." So, NO more chemo. YEAH!!! Praise God! And as long as his AFP stays low and he'll be in remission for 5 years, he will be considered medically "healed." We believe in Jesus name that he is HEALED already!! Thank you for your prayers and please continue to pray for him.

Last Tuesday night Lukey was running temp of 101.8 (ER if >99 for transplant and >100.4 for oncology). So, I took Lukey to ER at Fairfax. There were loads of people at 10pm at ER and the wait was excruciating. Anyway, we checked-in to the floor around 12.30am and Lukey was able to get some sleep, finally. We're still in the hospital, as the temp spiked up last night again and his ANC (white blood count) is low. We're praying to get home this weekend.

We'll update you soon. Hope you and your family are doing well. Blessings!

The Home Stretch

2009-02-21T14:50:00.009-05:00

This last round of chemo has been a doozy. Lukey has been so sick. I took him to the clinic on Thursday and they decided to admit him into the hospital. He had been vomiting and having serious diarrhea. His levels had dropped drastically in a matter of a day and he was neutropenic. So he had to stay 2 nights at the luxury accommodations of the Fairfax Hospital...haha. Ben stayed with him both nights to spare me the discomfort. They came home this morning and Lukey looks like he is feeling so much better. Tuesday will be his last chemo...FOREVER...In Jesus Name!!

My brother, Michael had to fly back here this week. He has been having so much pain and problems since the surgery. He went in to GUH and had a CT, an endoscopy and I think a barium swallow of some sort. They discovered that his liver has stuck to his stomach. At some point while it was healing it attached. Anyways...we're not sure what the next step is for him, but at least he knows why he hasn't been able to eat for the last 2 months.
Next week is chocked full of appts for Lukey and 1 for me. TWINS...I think I am in denial..still in shock...I have to look at the US picture to really believe it. Levi is very excited. He has been such a big helper to me with Lukey. The other day he wanted to rock Lukey in the chair like I rock him. I think he didn't realize Lukey weighs 25 lbs. I almost couldn't see Levi with Lukey on his lap.

My Big Boys

They are so cute together. Lukey spend most of the day on the floor in Levi's room playing. When he came from the hospital he was so excited to see Levi that I could barely hold onto him. We had some pictures taken at the clinic by Flashes of Hope. They take pictures of cancer patients and their families. They do a beautiful job. I was sooooo tired the day they were at the clinic. It was a pony tail day. I was like no way do I want to be in the pictures. They always have a professional make-up artist who donates her time to help the moms look their best. She just freshened me up a bit and actually made me look pretty awake and decent. Too bad they don't have someone who does hair HAHAA. They did a great job capturing Lukey. We will cherish these photos from the hardest time of our lives.
We ask for your continued prayers as we enter the last part of his chemo. His AFP needs to be low. All his scans need to be clear. And we pray for healing over the hearing loss. He will have an in depth study done in March to see exactly how much hearing has been lost. I pray that all goes well and he can have his central line removed in the next few months. I also ask for strength, strength for all of us. We will all rejoice together very soon....Thank God for that!

Update on Chemo 6th Round

2009-02-17T05:54:00.003-05:00

Each day at home is a blessing! We are grateful to be home these days. Lukey's last cycle of "bad medicine" is in progress. From cisplatin and vincristine, Lukey has been visibly sick. Poor guy has been throwing up quite a bit. Today we go for another dose of vincristine and the last chemo drug will be administered next Tuesday (24th). We ask our prayer partners to keep Lukey in your prayers this week. After next Tue, he will have series of tests prior to be called "in remission" and then we will go for follow ups bi-weekly/monthly/qtrly for 5 years until he will be officially named "healed." We know God has already touched him but we do not take anything for granted. We want to lift Lukey in prayer everyday. From other families that have taken this journey, we know this is a long road but we take comfort that God holds the future. Lukey's young life is a testimony of God's love, mercy, faithfulness, and miraculous healing.

Please pray for strength for Lukey to endure this last round of chemo. Also, please pray that this monster is forever gone from our lives. As always, we appreciate you rallying around our little trooper and we pray that your life will be blessed for your generosity.

It is with great sadness I read the story of Sarah, who passed away after a brave fight against HPB. Please pray for her family. We honor Sarah's life today.
http://www.eveningtimes.co.uk/news/display.var.2483074.0.brave_sarah_dies_after_cancer_battle.php

Lukey's 1st year!!

2009-02-11T09:42:00.007-05:00

I know that his birthday has already passed, but I have been completing this in my spare time. It's just a simple slide show of Luke's 1st year, but it means so much to us to see what obstacles he has overcome in such a short amount of time. He is our very brave and strong boy. He's our HERO!! I hope you enjoy this little slide show as much as I enjoyed making it.

God's sense of humor

2009-02-07T09:50:00.007-05:00

Well, our lives just got more interesting! Yesterday the ultrasound technician broke the news to us..."do you know that you are expecting twins?"!!! I must admit that it took us a few minutes to overcome the shock but I was thinking how much trust God has on us. He's giving us double portion of blessings. He truly has a sense of humor :) We are still in shock but very excited for what God has in store -- four boys! This was established at the foundation of the earth and God doesn't give more than we can handle. It's just that He has more faith in us than we have in ourselves! :)

We prayed for help during Jen's pregnancy --with intensive home care, dr's visits, hospital stays, etc, and we are so appreciative of the answered prayer. My aunt (dad's sis), Mercy, is flying in from Sri Lanka and will stay with us until after the twins' grand entrance in June. It was a long process for her to get the visa but thanks to Senator Webb's office for sending a letter of recomendation to US Consulate in Sri Lanka. Also, I want to thank our neighbors Bob and Madeline (The Sullivans) for contacting all the local senators on behalf of us. Thank you to Mathiasz's for guiding us throug the process. Most importantly, I want to thank Aunt Mercy's church (Moratuwa, Sri Lanka) for lifting up Lukey and praying for this trip. God answers prayers and He's faithful.

Trust in the LORD with all your heart and lean not on your own understanding, in all your ways acknowledge him, and he will make your paths straight. Proverbs 3:5-6

Today Lukey starts 6th and last round of chemo per the protocol. Please pray that this is the LAST chemo cycle period. We need God's intervention to get all clear after this. He's AFP is in 60's and please pray that today's reading will trend downwards. AFP rules HBP cancer, and we need this reading to be as lowest as possible and stay low (less than 10 or so) for the next 5 years to get the official "HEALED." We know and believe God has already healed Lukey and no matter how bumpy the road is, our trust is in God. We will be steadfast and thank God for the chance to fight for Lukey's life, no matter how hard the journey has been or will be.

Please pray strength for Lukey's body to endure the chemo and NO side effects. Also, please pray that this chemo will have no effect on his new liver/functions.

Thank you for stopping by to read about our journey. We are praying for you and your family. During this economic uncertain times, we pray for your storm and know that God will see you through. Your prayers saved Lukey's life and I know God will reward your love and faithfulness.

Blessings to you and your family.

Emergency Visit

2009-02-06T00:55:00.004-05:00

With the end of the chemo round, we have been busy with all the tests i.e. kidney functions, hearing, etc. And with the follow up transplant appointments, this week is jammed pack with appointments. Today was one busy day. We started early and went for GFR to Children's Hospital in DC. It is a dreaded trip with traffic, parking, and wait! The test is over 3 hours and it takes a lot out of Lukey (and all of us!). Since Lukey's K was elevated yesterday, we had to take another set of labs to check his K. Anyway, after long day at Children's, we got a call from our Oncologist about today's labs and K was spiked from even yesterday to 6.2. She arranged us to be admitted to GUH Emergency. We had to crank up to overdrive. However, at GUH the labs showed Lukey's K was at 4.9, which is normal for Lukey. So, thank God we got to come home with about 3-hr Emergency visit.

Tomorrow Jen has a US at Loudoun Hospital. Big day!! We get to find out about our next miracle. Please pray with us that God's will be done and Jen's wish is fulfilled :) I'll let you know what her wish is after we find out tomorrow!

We have a hearing test tomorrow at Fairfax. And on Sat we will be admitted to Fairfax to start the final round of chemo.

We need your focus and urgent prayers for

Good AFP reading. Lukey's tumor marker had spiked the last week from 20 to 60. We need this to be under 20 to be at comfort that cancer is history.
No more side effects from chemo.
Lukey's mind at peace. God's touch.
Strength for Jen and me
Covering for Levi

Every time we asked prayer, someone prayed and we felt the power of God's touch. Please continue to pray for our journey. We are forever grateful for your prayers and support. Thanks for coming alongside this long windy road. We pray that you and your family be blessed for your love and faithfulness.

Blessings

Cancer Fears ME

2009-02-02T20:31:00.003-05:00

We were so happy to celebrate Luke's 1st birthday. I have been working on a slide show of Luke's first year, which I hope to post in the next few days. I'm just trying to get the music right, in all my SPARE time..hahaa. I baked cupcakes for Luke on his birthday. He really enjoyed smashing it around and even put some in his mouth. It's really not the best tradition if the baby can't get in the bathtub. What a mess...good thing we have a couple of four-legged hoover vacuums walking around. It was just awesome to see Luke at a year. I haven't admitted to anyone how many nights I feared that the Lord would not give us much more time with Luke. The whole time he was in the ICU was terribly frightening. You just learn to cherish everyday. He is getting stronger and more feisty with one round to go, we are almost there. He has to have a blood transfusion on Wednesday, which should give him more energy, and on Thursday they will remove the feeding tube from his small intestine and put a new one into his stomach. We want him to be on it through this last round to make sure he is getting enough fluids and nutrition.

We have started a fundraiser called Cancer Fears ME. It's through the Cool Kids Campaign. They sell t-shirts, sweatshirts, hats, and other miscellaneous items with the logo Cancer Fears ME on it. 25% of every sale goes directly to Luke and the other helps the Cool Kids Campaign with all they do for children with cancer. You can get on their website to read about the non-profit co. and how they got started and where the money goes. It really ends up helping so many. You can order directly online at http://www.cancerfearsme.org/ and put in Lukey's customer number which is #264. They will ship directly to you. I'm so excited about this. Cancer Fears US, we don't fear cancer. They have this cute black and pink sweatshirt I was going to order, then I remembered I am pregnant. I don't think they carry maternity sizes..lol. I guess it doesn't really matter in a sweatshirt anyways. I urge everyone to go to the website an check it out. Even if you don't order there are so many other ways to help support children with cancer. If you know someone who has been affected by cancer this would make a great statement.

Lukey, thoroughly enjoying himself smashing the cake.

I know I've said this a million times, but thank you to everyone who helped us get this first year mark. We are looking ahead to many more.

Letter to my son, Luke --on your 1st Birthday

2009-01-30T10:34:00.007-05:00

You're a miracle and we celebrate your life today with love and thanksgiving. HAPPY BIRTHDAY, LUKEY!

You have battled all odds and you're certainly my hero. At your birth, there were concerns about your spine and some doctors thought you had abnormalities due to a cyst they discovered. And then 6 months ago, they said you have a 75% chance of living, when you were diagnosed with a cancer that has odds of being dx 1:1 million children your age group. But you kept fighting. When you were diagnosed, your mummy and I wanted to take your cancer and pain away from you and wanted to trade places with you. But God amazed us with His grace and gave you strength and courage to fight, and fight you did!

You endured pain and suffering in your first year, that us adults may find it hard to take it in a whole life. And all with your sweet smile. I don't know whether I could have passed the year of trials and tribulations without your strength and courage. Whenever I wanted to cry and hide myself from everything, God showed me your strength and told me that He was in control. When daddy and mummy cried out to God, He gave us peace and reminded us that you're His own. You're so very special and everything about you is a testimony of God's faithfulness, love, healing, promise, and grace.

Your life has taught me lessons that may have taken me a lifetime to learn. Your journey has brought us contact with people, that only heaven could have made it possible. Although you have some short term and long-term scars from this battle, I know that our God is more than enough to live the life according to His purpose. Even though your journey continues, we look to the future with promise and much hope... God has brought you this far and deep, has a purpose for you. You certainly have positively impacted my life and I know the lives of many, and that's just the beginning. I treasure you and honor God for allowing this day, a year ago, a reality.

Love and God's Blessings,

Your everloving, Daddy

Special Note:

On behalf of Jen, Levi, and Luke, I thank all our family and friends who came alongside and lent a hand in Luke's journey and said yes to the higher calling. A special THANK YOU to Michael, my brother-in-law, Ellen and lil Emy Lou for teaching me the human version of love and sacrifice. There's no greater love than sacrificing your life so that someone else can live. This brings home what Jesus did for me. Thank to our church, pastor, and our the church family here in Ashburn and all over the states and the world -- we love you and thank God for you. Thank you to Belmont Greene community for being great neighbors.

Post Transplant Chemotherapy

2009-01-26T22:11:00.002-05:00

Well today was Luke's last chemo for this round. He has 1 more round to go!!! YAY!! We are very excited to become a part of society again. I can't wait to talk to people who don't have a stethoscope around their neck. Today was a very long day. We arrived at the clinic at 9am and left the clinic at 4pm. He got his Vincristine, Cytogam, and Pentamadine. The Vincristine is the chemo..the other two protect him from various viruses while being immune suppressed. While we were at the clinic, Levi went to Sibling Support Day at the Cancer Ctr. in Fairfax. He had a great time. They gave him a doll with a central line in it, so he can give the baby medicine and change the dressing just like I do for Lukey. He was very excited about this and felt very important. Tonight when I gave Lukey his meds, Levi also gave his baby medicine. He did a really good job. I think we might have a Dr. on our hands!
Lukey is doing very well. His counts were good, so I don't have to give anymore shots...Thank God. They are going to keep a close eye on his hemoglobin...he may need a transfusion, but we are pretty used to that. Speaking of transfusions. I got an email from a friend in my Circle of Strength today. She was at Fairfax donating blood today and spoke of the need for donations. She said they are running in a serious shortage. All of you local readers please spread the word about donating blood, of course this is a good thing to do anywhere. I also cannot stress the need for organ donors. I would give you the numbers of people who die waiting for an organ, but lets keep this on an upbeat note. Being an organ donor can save a persons life...or several people. Lukey would not have made it without a liver. I did not actually know that until after the surgery. I didn't know his situation had become more serious as the tumor had spread up the vena cava. My brother is a HERO! His selfless act of love saved Lukey's life. Not everyone can be a living donor, but all donors are heroes!!!
Our goal is to get Lukey eating and drinking again on his own. He is eating little bits of food, but whenever I give him the cup to try, he throws it. I have every kind of sippy cup imaginable for him to try. They all sound the same when they hit the floor...hahaa. We will have to have more scans before starting the last round of chemo. Another kidney function scan and another hearing test. There won't be more CT scans until after the chemo is finished. Lukey is so strong. He has such a great attitude, always smiling. I've learned a lot from him. No matter what is happening to you..you can always laugh and smile at the simple things...and a really soft blankie is quite the comfort.
I am twenty weeks pregnant this week. Next week I have an US in which I hope I can see what we are having. Lots going on. I feel like I am carrying this baby in my lower back. Uggg. Thank you all for checking in on our blog and keeping us in your thoughts and prayers. We are getting our second wind to finish this race! Love to you all. God bless.

Mid-Week Update

2009-01-21T21:18:00.003-05:00

I'm Back!! I haven't posted anything in a very long time. Ben has been doing a wonderful job of keeping this updated. We have had a couple unexpected hospital stays and I'm just so tired. We are home and Lukey is doing great. Tomorrow we go back to GUH for his transplant appointment and then he will have his last chemo for this round on Monday. Then just one more round to go...I am counting down. I just pray he stays healthy enough to be at home. His counts will probably start dropping a lot now, so we have to be extra careful.
I feel really sorry for Levi sometimes. I'm sure the only thing he will remember about this later on is the incessant hand washing. He probably goes to bed hearing "have you washed your hands?" "Levi, wash your hands". I bet he dreams about it. Poor guy. As a mother I am torn by guilt for one and worry for the other. It's a tough spot to be in. I don't even have the time to think about being pregnant, but my body reminds me. More and more it reminds me.
I had his meds adjusted so the start at 6am instead of 5 and end at 10pm instead of 11. It's kinda like daylight savings...I feel like I gained an extra hour. If I didn't have to get up to give him more feeds and change his diaper, I would actually be getting more sleep. I could easily cross the line and become an insane person. The Lord just helps me hold it all together. I'm so tired. My baby is the one who has to go through "hell". I'm not cussing there...I'm serious. He has been through more in 6 months than most people will in their entire life. He is so happy too. I really should not complain.
We are working on getting Lukey to eat and drink by mouth again. We met with a speech therapist while we were in last time. She gave us some good tips. Some kids who have been off food for 6 months or more take a long time to start eating again. She said they start to vomit if you even go near their mouths. Lukey is not like that. He still puts everything in his mouth. He ate a little baby cereal today and didn't throw up. The bottle is history though. She says he most likely won't go back to it. We are trying the cup. Sippy cup and straw cup, we'll see which one he takes to. Levi went from bottle to straw. It's a task. We want him off the feeding tube. It's wonderful for giving meds, but his poor little nose has been bleeding where the tube goes in and the tape really hurts his face.
I talked to my brother on the phone today. He might need to make another trip here soon. He is still having a lot of pain and the Dr said that all the fluid that has built up around his liver might be the culprit. Unfortunately he has to come all the way to Georgetown to have it drained. Please say a prayer for Michael, he is our hero and deserves to feel well after all he has done for Lukey. We thank you for your continued support and prayers. The cross would be way too heavy to bear alone. Thank you all for lifting us up in prayer.

Hospital update

2009-01-19T22:24:00.004-05:00

Lukey was released from the hospital on Sunday. The BUN spiked on Sat but with additional fluids, it came down enough to get released on Sun. Everyday at home with the family is such a gift, and it was nice to have everyone home today.

Lukey's chemo continues tomorrow with Vincristine. With Day 1 and 3 chemos, Lukey has been throwing up and seems to be with some discomfort. I'm amazed to see him battle the cancer in the last 6 months and I thank God for giving him (and us) the strength to take the fight to the cancer.

Please pray for no side effects from tomorrow's chemo and let God preserve Lukey's body to endure what Levi calls the "bad medicine." Thank you for your thoughtfulness and prayers.

Blessings!

Rejection or Chemo?

2009-01-17T10:50:00.005-05:00

Well, I don't think the answer was clear but whatever it was, now it seems like Lukey's liver functions are improving. Thank God. Chemo adds a lot of complications to the equation and we're going to face some challenges related to that in the next month and a half. But I prayerfully believe that we're coming to a landing in the coming month. God has been faithful to bring us this far, and we know that He is faithful to see us through.

So, I think we will get to go home this afternoon provided Lukey's BUN (Blood Urea Nitrogen) levels stay below 25. Please lift Lukey up and let God touch our little trooper. We are blessed with some powerful prayer warriors that know how to simply pray and touch the hem of His garment. Each time we have asked for a specific prayer request, and after you prayed, the situation has gotten under control. So, THANK YOU. "Your faith has healed you." Mathew 9;22

Please join us in celebrating power of prayer and God's miracle on January 30th, Lukey's 1st Birthday. If you can, please skip a meal on this day and pray for Lukey and all the pediatric cancer kids and families that are fighting for the gift of life and travelling a long, windy, bumpy, and life altering road.

Everyone around here are getting ready either to witness history in making or skip town to avoid crazy traffic for the inauguration. Hopefully, we don't have to come back to GUH in the next few days. Our Monday's chemo is postponed to Tue due to the MLK Day and inauguration but that's at Fairfax Hospital.

Hope you have a great weekend! Blessings to you and your family.

Prayers still at work

2009-01-16T01:20:00.003-05:00

Quick update. No biopsy and it's been called off now. Praise God! Lukey's liver functions are improving and Dr. Kauffman is almost ready to relate the recent events to side effects of chemo and stomach virus. They resumed the feeding to pre-chemo levels and we need Lukey to tolerate the feeding to go home. Hopefully, we get to go home for the weekend. Please keep Lukey in your prayers. Thank you.

Prayers at work

2009-01-14T23:51:00.005-05:00

Thank you for your prayers for Luke, as his liver functions improved ever so slightly today. The trend was positive enough that Dr Kauffman in consultation with the transplant surgeons decided to postpone the biopsy to Thursday, again, if needed. Please continue to pray that all the recent liver enzymes escalations are related to chemo and not rejection and that we can come home soon.

Special thanks to our pastor and the entire church for continuing to hold us up in prayer. We have prayer warriors from many countries and across the great country of the USA that are praying for our trooper. Heavens know the difference you made. Thank you, Thank you, Thank you!!!

Talking about the great country, yesterday I had the honor of becoming a US citizen and it was a truly emotional day. I missed my wife at the ceremony, and the videos and songs were very sentimental that I had a chance to reflect on the very first day I came here and the last 11 years in this country. It is true what they say, "the land of opportunities." God has blessed me to be here and on top of that, given me a great wife and awesome children. I always knew God but my walk was defined in the last 11 years. I have met some of the best people here and have come to appreciate many things in this country some people take for granted. Congratulations to Pastor Steve, who also received the citizenship yesterday.

Blessings.

Update on ER visit - rejection or chemo?

2009-01-13T22:25:00.004-05:00

After getting some blood work and fluids at ER this morning, Lukey was transferred to the regular floor at GUH. There are many tests conducted to evaluate whether there's liver rejection due to lower prograf levels or the symptoms are due to chemotherapy. It is a very delicate and complicated analysis, and all the blood tests will be analyzed one last time tomorrow morning prior to conducting a liver biopsy, if required, to further evaluate the rejection.

Therefore, I like to ask your focus prayer for all the liver function numbers to come back trending downwards tomorrow morning, so that Dr Kauffman can call off the biopsy. Also, please pray for peace and strength for all of us. Special prayer for Jen, as she was not feeling well today after spending almost the entire day here at the hospital, with almost no sleep last night. Also please pray for our bundle of joy that will make the grand entrance in May/June, that God will shield the baby from the bumps of our journey.

As always, we believe that God is in control. We know that because when we cry out to Him, he gives us peace. Thanks for taking the time to stop by, we are blessed by your thoughtfulness and prayer.

Blessings.

Emergency Prayer

2009-01-13T04:15:00.005-05:00

This morning Lukey will be admitted to ER for dehydration caused by severe diarrhea. Lukey started chemo last Thursday and we had to hold off on giving prograf (anti-rejection), as chemo in this case would act as a substitute. However, due to delays in administering chemo, prograf was on hold for lot longer than planned. Therefore, the risk of rejection comes in to the picture and that's why diarrhea is of concern. They will be doing a lot of tests this morning and possible biopsy. Please pray that all the tests are satisfactory and Lukey's liver functions are normal.

Jen and Lukey left the house around 4am and I will be staying at home until daybreak so that I can find someone to take care of Levi and then join them at ER. After all the recent hospital stays and outpatient visits, Levi has been missing us a lot. He's been a great brother and has sacrificed a lot of mummy and daddy time! So, please continue to keep Levi in prayer.

Please pray for God's healing touch. God's our hiding place and ever present help. He brought us this far and He's faithful and His love is unfailing. We know that HE's in control.

Then they cried out to the LORD in their trouble, and he brought them out of their distress. He stilled the storm to a whisper, the waves of the sea were hushed.
Psalm 107:28-29

Please pray

Lukey's Diarrhea to be under control
God's healing touch and peace for Lukey
Smooth ER visit
Liver and other tests to be normal
Better coordination between transplant and oncology medical staff
Strength for Jen, Levi, and me
Our helpers

I will update you as soon as I can. Thank you for your prayers and support.

Blessings.

Happy New Year!

2009-01-08T08:40:00.003-05:00

Sorry for the delay in the post. We came home on the 30th and the medical care came along with us! We have to give Lukey 10 different meds some twice a day. The regimen starts at 5am and goes on tll about midnight. First 6-months after transplant is very hectic with twice a week clinic appointments, meds, and some hospital visits. Talking about hospital visits, Lukey was admitted to GHU after last Monday's appointment for high bp/heart rate. They monitored him closely and prescribed bp medicine. One of the side effects of Prograf is hyper tension or high bp so we may have to deal with that until Lukey's body regulates the levels, I think. We were thankful to come home at least for a day prior to heading to Fairfax for chemo.

We checked in to Fairfax Hospital today to resume Chemo, the original protocol (Cisp,5-FU, and Vinc). We called early this morning but no beds were available and then we got the call that everything was ready for us and to come to the hospital asap. When we checked in, it was a whole different story. Nothing was ready! Lukey was off of feeding since early this morning in view of the full body CT scan. However, after waiting the whole day for a call from Radiology, when we finally went down for the CT, our orders weren't there for them to start and on top of that the Pediatric radiologist was already gone for the day and the adult radiologist refused to do the CT without sedation. Our poor Lukey was without food the whole day and now the plan is to do the CT tomorrow morning under sedation.That means no feeding after midnight. Oh by the way, we didn't have a bed available the whole day and we were waiting in a procedure room. Hungry baby, locked in a room without much to do, no crib, etc... you get the drift:) Anyway, everyone is entitled to have an off day an this is Fairfax's! They have a great staff and genuinely care for Lukey.

AFP (alpha feta protein) is the tumor marker of Hepatoblastoma. When Lukey was dx on Aug 5th the count was over 400,000 and then gradually it came down to after the 4th round of chemo the count was just above 500. After Dec 5th Liver transplantation, Lukey's AP was 15(fifteen!!). Normal count in pediatric body is anywhere from 5 to 20 depending on the school of thought of the oncologist. Well, after Christmas, Luke's AFP level had started going up (we didn't know this until later) first to 30 and then to 69. We were told that there are no guarantees when we started this journey but we refused to believe the report of the man instead we accepted God's plan. We are in a fight that's not physical, I'm counting on God-- we want to beat the cancer and with God's help and your prayers and support, WE will.

Please pray that Lukey's transplant meds accept chemo, and for NO side effects. From previous chemos, Lukey has lost some hearing and has minor effects on kidney functions. Please pray for strength and peace for Lukey. Our trooper has battled long and hard but God has strengthened Lukey and our family to go through this storm. Please pray for Jen, I know she has been through a lot and she needs strength. When no one and no thing can assist your situation, you certainly know that God is at work. Thank you God for your faithfulness, healing, strength, comfort, and miracles. We don't take anything for granted, certainly not your love and fervent prayers. Everyday, numerous people help us manage the day and continue this journey, which already has passed 5 months mark. We don't take the love and kindness of people around us lightly. We thank God for sending the help, without it we would be stressed beyond comprehension. Some came alongside at the beginning and still with us - faithful in deed. Some came in between but sent in at the right time and for a reason. The help is something we started praying for when Lukey was first diagnosed with cancer back in August. We plan to celebrate Lukey's miracle journey and God's love with friends of Luke's Hope soon. I long for that day that we can have you over at our home to honor you and to say THANK YOU. You made a difference in our lives. You defined our future ministry --care for "children with cancer" and to come alongside parents like us. We will take this ministry seriously and prayerfully, and with our service, will honor you for what you have been to us in our darkest days.

Blessings to you in the year 2009. May the Lord show favor upon you and your family.

Home Sweet Home!

2008-12-30T14:44:00.003-05:00

After nearly a month in the hospital, we are finally all home and together. It was so good to get home, but I must admit it is also a little scary to leave the constant care of nurses and Dr.'s. Levi was so excited that Lukey was home, he tore up the stairs and into his room to see him. Lukey's face just lit up with a huge smile. They have a very special relationship and Ben and I don't realize the toll it takes on them too. Levi has a very hard time when Lukey is in the hospital.
Upon our arrival back at home, we were faced with new challenges. Like getting the feeding pump working properly. I almost lost my mind. I felt serious rage towards that feeding pump. I left my directions for making a huge batch of Ele-care formula at the hospital, so I had to go by memory with the measurements. It was definitely a first night back. A little stressful, but so nice. Lukey is on so many medications. It starts at 6am and the last one of the day is given at 11pm. It's something we just have to get used to. With my brain only functioning at 70%, I just have to follow my med schedule. As time goes by, he should go down to 1-3 meds. He will always take them though. The Prograf is what they call his Lifeline. It is what he will take for the rest of his life to avoid liver rejection.
We will have to go into the clinic at Georgetown 2-3 times a week for a few months. We are also getting ready for Lukey to start back on the chemo. By the beginning of next week I'm thinking. We will find out tomorrow. We are almost there. Two more rounds of chemo and my little man will be done with it.
All we need now is to get Lukey to eat on his own. He is still throwing up and not wanting to take anything by mouth. They moved his feeding tube down into his small intestine, so he doesn't throw up formula anymore, just phlegm. He is so congested in his head that he swallows everything, then throws it up. He is also on breathing treatments to help with the congestion. I really want him to eat. The feeding pump is such a major hassle. Please pray Lukey starts eating again. Otherwise, he is doing great. His liver function is really good. We are just so blessed and thankful that saying thank you seems like not enough anymore. We could not get through this without you. You all have done something that has made this time easier. We are all incredibly exhausted and hoping to catch up on some rest before starting chemo. I have just one more med to give and I need to start his new feeds back up, then it is night night for me. I sure hope Lukey sleeps tonight. He took a very long nap today and I was able to do all the laundry and clean up. Tonight, I just want to sleep.
A quick update on my pregnancy. I am 16 weeks along and I heard the baby's heartbeat today and saw (her) moving all around. (She) is a wild one. I don't know that it is a girl. But I Believe!!
Happy and Blessed New Year to you all. Thank you for keeping us in your prayers. We love and appreciate every one of you.

Fernando Family Christmas

2008-12-26T11:23:00.007-05:00

Our Christmas Miracle!

The Fernando Family celebrated the birth of Christ at Georgetown Hospital this year. We actually had a very nice Christmas. We had our little tree and most importantly we were all together. Ben did the presents and stockings in the morning with Levi and then came to the hospital in time for Santa's arrival.

Like Ben said in his post, we had Subway for lunch. Very festive!! The good thing is we can't say we over ate this Christmas. For dinner, our wonderful friends brought us food and sparking cider and yummy chocolate cake. We had a great day. Santa brought lots of gifts and then several others stopped by with presents. Levi and Lukey got more presents this year than we know what to do with. So many generous hearts reaching out to the children and families in the hospital..it's wonderful.
The boys in uniform came and delivered gifts.

Later in the evening though the day got interesting. I was looking at Bens sweatshirt wondering what was on it. It was a big stain looking thing. Then I looked down at Lukey and the whole front of his pj's were bloody. Well, you can imagine my reaction. We thought that the clamp on his line had been rubbing on his incision and it came open, but once they got it cleaned up they noticed that there was still blood coming from somewhere. His central line had a hole in it and his blood was dripping out. The nurses paged surgery and one of the Dr's came up. They were able to repair the line by cutting off the bad part and gluing on a whole new bottom. We were very thankful that it did not need to be removed and a new one put in. But since you can't use the line for 6 hours until the glue dries they were going to have to start another IV on him. It was very late by this time and I headed home with Levi. I talked to Ben on the phone and he said they were unable to start an IV on either foot. My poor baby...going through unnecessary pain. They gave up and decided to wait until the glue dried. Lukey slept pretty well last night which means Ben got some sleep. I'm getting ready to head to the hospital with Levi, so I'll update again in a day or so. God Bless you all, I hope your Christmas was wonderful.

On this Christmas -Love, Joy and Everlasting Peace

2008-12-25T06:22:00.009-05:00

What a historical day...For unto us a Child is born, unto us a Son is given... As I meditate on his word this morning, I couldn't stop noticing the impact Christ made on earth and more specifically, in my life. The words that came to my mind are... redeemed, favored, forgiven, peace, and joy--that is not of this world. When you're going through a valley of shadow of death you learn a lot about God --His peace, healing, strength, resurrection power, mercy, etc., and at the same time how weak and inadequate I am -- as someone said "glorified dirt!" Jesus came to the earth for a purpose and although he knew the suffering and sacrifice that was required, He served with joy. What a humble beginning -- like Levi says "smelly stable with cows and sheep :)" but how glorious was His redemption. It is his love that changed the world, and he paid sin with His life, so I can have life and life more abundantly. His agape love can transform lives and it has certainly done that in my life. Although my love is still failing, His grace is sufficient. The challenge that my family and I will accept on this Christmas day is not only walk closer with Him but also to let His light shine upon someone else.

We're at the hospital but I thought we had one of the memorable days. Since we didn't get to go home, we tried to bring home to the hospital! Jen did a good job of organizing everything. We didn't let our journey get us down because to be honest, we are in a better situation than lot of parents on this floor. We had many folks that were treated yester-years come by with presents for Lukey and Levi, and it was nice to see them doing well. We tried to order out but most of the restaurants in Georgetown were closed so we had our Christmas lunch by courtesy of Subway "eat fresh!" Our Sri Lankan friends, Trevor and Dhammika, are bringing dinner for us, thanks guys.

We are grateful to all of you for your continued prayers and support. We are the most blessed people on earth to have the love and support of our team, who have rallied around us in the last 5 months. Like I said before, when you're going through hell, the heaven is worth the journey with people like you.

We wish you and yours a very Merry Christmas -- let Lord's favor be with you and may you be granted love, peace of mind, and joy.

With love and best wishes.
Fernando's

John the Baptist
And this was his message: "After me will come one more powerful than I, the thongs of whose sandals I am not worthy to stoop down and untie. I baptize you with water, but he will baptize you with the Holy Spirit." (Mark 1:7)

Isiah the Prophet
"For unto us a Child is born, Unto us a Son is given; And the government will be upon His shoulder. And His name will be called Wonderful, Counselor, Mighty God, Everlasting Father, Prince of Peace." (Isiah 9:6)

Mathew
Joseph son of David, do not be afraid to take Mary home as your wife, because what is conceived in her is from the Holy Spirit. She will give birth to a son, and you are to give him the name Jesus, because he will save his people from their sins. So all this was done that it might be fulfilled which was spoken by the Lord through the prophet, saying:"The virgin will be with child and will give birth to a son, and they will call him Immanuel"—which means, "God with us." (Mathew 1:21-23)

Luke
The angel went to her and said, "Greetings, you who are highly favored! The Lord is with you." Mary was greatly troubled at his words and wondered what kind of greeting this might be. But the angel said to her, "Do not be afraid, Mary, you have found favor with God. You will be with child and give birth to a son, and you are to give him the name Jesus. He will be great and will be called the Son of the Most High. The Lord God will give him the throne of his father David, and he will reign over the house of Jacob forever; his kingdom will never end. "How will this be," Mary asked the angel, "since I am a virgin?" The angel answered, "The Holy Spirit will come upon you, and the power of the Most High will overshadow you. So the holy one to be born will be called the Son of God. Even Elizabeth your relative is going to have a child in her old age, and she who was said to be barren is in her sixth month. For nothing is impossible with God." "I am the Lord's servant," Mary answered. "May it be to me as you have said." Then the angel left her. (Luke 1:28-38)

Mary's Song
And Mary said: "My soul glorifies the Lord and my spirit rejoices in God my Savior, for he has been mindful of the humble state of his servant. From now on all generations will call me blessed, for the Mighty One has done great things for me— holy is his name. His mercy extends to those who fear him, from generation to generation. He has performed mighty deeds with his arm; he has scattered those who are proud in their inmost thoughts. He has brought down rulers from their thrones but has lifted up the humble. He has filled the hungry with good things but has sent the rich away empty. He has helped his servant Israel, remembering to be merciful to Abraham and his descendants forever, even as he said to our fathers." (Luke 1:46-55)

Luke Update

2008-12-23T20:23:00.008-05:00

Well...I'm finally posting something. Tonight I came home and Ben is staying at the hospital. Last night Lukey just would not sleep. We are still in the hospital because Luke can't stop throwing up. We are preparing to be there for Christmas, though we are still holding onto hope that we will get to come home tomorrow. Luke had pulled out his NG tube (feeding tube) so they decided to keep it out and try feeding him. He did really well for a day, then stopped eating altogether. They put the tube back in and he is being fed and getting all his meds through the tube. It's actually so much easier to give him his meds that way, but I would love for him to start taking a bottle. He will go home with the ng tube, so they had to come and teach me how to use the pump and fill it with his formula and what not. On top of that he is now going home on 11 different medicines, all with their own instructions. I am now officially a home health nurse.
Lukey after he pulled out his ng tube. He looks like his old self.

Levi, keeping himself busy at the hospital.

Luke has had so many problems with formula, he is now on a special pre digested, hypoallergenic formula. If anyone would like to donate some breast milk, I'd happily accept. Seriously...I thought about going on Craig's List looking for breast milk. During his stay in the ICU...I just could not produce anymore milk. Maybe due to the pregnancy too. Levi has been coming to the hospital and getting spoiled by the Child Life Specialists. They have a big play room, with all the cool Wii games and activities and crafts. Today he was eating pizza in there and playing Wii, while I was gagging on meatloaf and cleaning up vomit. The hospital really does do a lot for the kids that are in during the holidays. We have had two visits from Santa and one from a family that always donates toys to the kids. On the outside of Lukeys door is a basket where Santa's helpers put a little treat in everyday. We desperately want to be home for Christmas, but will be happy where ever we are. Lukey's bottom teeth are also coming in, which adds to his irritability. His incision is healing nicely and his eyelashes and eye brows have come back. His hair is growing in fast too. He looks way more like Ben now than before. Well I had just 3 hours of sleep last night, so I will post some pics and say goodnight. Thank you everyone for all the cards and cookies and meals and prayers..oh and livers (Uncle Michael). We are so grateful I just can't even express it with words. This has been the most difficult time of our lives. I feel like I have been walking through the valley of the shadow of death...but my comfort is that I know I don't walk it alone. The Lord is with us..and he has put so many people in our lives to walk with us through the valley...all the way to the mountain top. We'll get there!! Nana and Uncle Michael's last visit before flying home

Levi loves his baby brother.
A happy Lukey. I love how they let him wear his own clothes instead of a hospital gown.

Post Transplant Day 16

2008-12-21T22:38:00.002-05:00

We are still at the hospital, as Luke has been experiencing some pain and feeding related complications. These are just a few hiccups but we are so anxious to get home after almost 3 weeks of hospital stay! However, we are pleased with the care we get here at the transplant unit and they are keeping a close tab on Luke's progress. No matter how long it takes, we want our precious man to feel comfortable and without pain. He's the one who endured the surgery and related pain, we were there for the journey! So, he gets what he wants. Please pray with us that Lukey will be home for Christmas -- that will make this Christmas very special to me.

Yesterday Michael flew back home and I was so happy that he was able to be with his family for Christmas. The gift he gave Luke will always be special and his reward will be in heaven. Thanks Michael, Ellen, and Emmy Lou for your love and sacrifice -- we are eternally grateful to you. Thanks to Nana as well for spending time with Levi, and providing excellent care to Michael!

Thank you for stopping by and being so thoughtful in the midst of the busy season. Your prayers for Lukey and for our family is very much appreciated. God Bless!

Bumps on The Road

2008-12-19T14:06:00.002-05:00

Luke is recovering well but with some minor set backs. He's running a slight temperature while still battling the liquids in his lungs. The Dr is concerned with Luke catching pneumonia. He wasn't drinking his milk so the ng tube had to go back. Please continue to pray for our little trooper and his new journey.

Jen and I have switched places the last couple of nights. Although it seems night and day compared to ICU, the transplant unit is still not a very comfortable place for my pregnant wife and I hope to take over the night shifts from her, tonight. I was back at work the last couple of days, as our planning and budgeting season is in full flow. Levi spends most of his time with Nana, and it is such a comfort to have her around. Unfortunately, Nana and Michael will be flying back to Reno on Sunday and we're looking for someone to fill in the gaps! Well, God has provided in the last 5 months and for sure, he will make a way. Levi is the ultimate 4-yr old brother for understanding the times and sacrificing, although,unfortunately he has not much choice in this, after all.

Jen didn't have access to a computer for the last couple of days but I know she wanted to update you soon. Thanks for your prayers and support. We appreciate our team and we couldn't have made it this far without God's help and your prayers.

Blessings!

Downgraded to "Gold" status

2008-12-17T12:58:00.004-05:00

Just a quick update to say that Lukey was downgraded from "ICU" status and was moved to Transplant unit last night. His new status is called "Gold" and I'm trying to figure out why they call "Gold" for staying at the hospital, no matter what status you're in :)

Thank you so much for your prayers. Also, it seems like my greatest Christmas gift "Lukey home for Christmas" is coming true. Please keep him in prayer that he will continue to improve and regain his strength every day. Please pray for Levi as well, as he, like Jen and I, went through all these changes last 4 plus months and needs God's touch.

We will be getting some lessons on our new "normal" life and how to care for Lukey. We thank God for saving Lukey's life and letting us care for our precious boy. He went through a lot already and he keeps inspiring me of the fight. I don't know why he was the stat 1:1M, but I know God strengthened his body to be able to endure the pain. Please keep the children and families that are going through this journey in your thoughts and prayers. It breaks my heart to see children suffer and I think my ministry was confirmed in the last few months.

Thank you very much for your love, thoughtfulness, friendship, time, kindness, sensitiveness, etc etc. We really appreciate you.

Blessings!

Some pictures to go with the other update

2008-12-16T07:29:00.008-05:00

Well I had planned on giving an update last night, but I fell asleep. My husband picked up the slack for me and gave a wonderful update. I was so excited yesterday that they took Lukey off the ventilator. It was the first time I heard him cry in 12 days...and it was music to my ears. Ben definitely needs a night at home to sleep in his own bed. I hope they move Lukey out of the ICU soon. I hope he can come home for Christmas. I'm going to post some pictures since most of the updating has been done. Today Levi gets to go see his baby brother...and he is soooo excited.

Uncle Michael, my cousin Veronica and her husband Ben all came for a visit.

Lukey still sleeping...he wakes up for short spurts and then goes back to sleep.

Here's one of his wakeful moments...I could not get him to smile though. He just stared at me. The nurse kept putting his blankie on top of his head for some reason. (The nurse from the previous blog entry.)

After they took the tube out he was very agitated. His cry was weak, but beautiful. They had to clean all the tape stuff off his face too...he was just mad.

No tube...and all tuckered out from the whole ordeal. See there's that blankie again. I love that I can finally kiss his kissable cheeks. I'm still waiting to be able to hold him.

Day 10 Post Transplant

2008-12-15T17:57:00.003-05:00

Well, Luke's exterbated from the breathing machine. This is a great milestone towards getting downgraded from ICU status but due to the fluid overload he's not out of the woods yet. Please pray that he will do well tonight that he will not have to go back on the ventilator. I'm praying for my greatest Christmas present ever -- Lukey home for Christmas!! And cancer free!!!

Today was rather an off day for me, as I was little agitated with Luke's nurse. She was tossing and turning him this morning and when I saw Luke's tears it just broke my heart and the warrior in me came out! But unfortunately it was just the beginning. She left Luke for hours at a time, unattended. Finally, in the evening, I had a chat with the charge-nurse and made sure that my boy and this nurse cut ties in the future :) You can see that I had logged too many hours at the PICU and need a chill pill!

In one of my previous posts I had mentioned about a child that was put on the life support... well, she's a miracle baby! When her cancer (Neuroblastoma) just about consumed her, the dr at Georgetown had the wisdom to seek help for her on an international drs blog (I think). And a dr in England had seen this and called Georgetown with the drug he used on a patient with a similar cancer in the UK, and when they gave her the drug, she had immediately responded. Timing couldn't have been better, as she was just about to go through a major/risky surgery. Too much providence in this to be called good old "lucky." Tonight she's a miracle child fighting hard to hold on to her life. They have reduced the support by the machine and she's getting better! The parents are praying hard and they were jubilant of the hope they now have. Please say a prayer for this family for strength and healing.

Michael continues to improve at home. He's getting pampered by mum's care! I hope he will get dr's approval to fly home soon to be with his wife, Ellen and little Emmy Lou. We thank God for them and the healthy liver Michael so wonderfully took care of! We were told that Lukey's new liver is functioning almost "normal." It will take a few more days to reach the "normal" status but as the surgeon outlined..."it is beautiful!" Praise God! The journey was rough but it was well worth it and most of all, life saving. Through it all, we give God the glory. We thank Dr. Crowley at Ashburn Pediatrics for discovering the tumor at the 6-month "well" baby visit and giving us the time to fight it. I'm not the one to call this -- "lucky."

Hope your Christmas plans are coming along well. Thank you so much for stopping by to read about our journey. We appreciate and love you very much. Good night!

Day 9 Post Transplant

2008-12-14T11:24:00.002-05:00

Sorry about the delay in this post. We're still in the ICU due to the liquid overload in Luke's body. As you can remember, the day after the transplant surgery, they discovered a blockage in an artery and there was backflow of blood. This prompted the BP to drop and subsequently pumping about 900ml of liquid in a short time to stable the BP. Then they started aggressively removing liquids, which they did but BP started dropping again. Then for the 3rd time, last Friday they saw a BP drop but was quickly gotten under control with about 350cc of liquids, mostly thick Albumin, which helps pulling the water off of tissues into the veins. Since then, things are fairly stable and we are praying that Luke’s body starts accepting the fluid shifts and starts excreting liquids. So, there is no set goal by the drs., but they are letting Luke handle the liquids in his own time but giving him Lasix to gently push the liquids off through urine.

It’s been an experience spending nights at ICU. The bells and alarms through the night, and army of nurses running from one room to another addressing the emergencies. It could be overwhelming experience, but my prayer has been “God, please let your peace be in me.” However, I’ve had my share of anxious moments with all the alarms and frequent reports. I found out how weak and desperate I could be. As a parent, it is tough to see your baby go through these times and I must admit I came close to asking “my God, my God, why have you forsaken me.” But my walk with God has taught me that times like this is where God shows up – exhausted and almost at the end of our human road! It amazes me how he shows up. In the last 4 months, Jen and I have leaned on Him more than anytime before in our marriage and He has never forsaken us, He has always come through – not in our time but His own!

Talking about the last 9 days in the ICU, I’ve participated in the daily drs rounds and have become somewhat proficient at how they handle Luke’s care here. I’ve asked so many questions and watched the nurses care for Luke. It is very scary when you see even the best nurses make mistakes. I remember reading a blog from a fellow parent, who went through a similar experience to what we are going through, and what she said about care at the hospital…”you are your son’s only fulltime nurse.” I’ve come to experience the profound truth in that statement and why I need to pray for the medical staff. All my questions may seem like I’m too curious or that I’m undermining their expertise, but Luke’s my 24/7 and only patient and most of all God has placed me to care for him while I’m on earth, so I’ll do what I have to do.

This is where I take over. (Jen) I just relieved Ben at the hospital and he didn’t quite get to finish what he was saying, but I think I can finish it for him. God is so faithful and has really taught us to trust in him alone. Ben is so awesome, he has stayed at the hospital every night for the last 9 days, and he plans to stay every night until he is out of the ICU. It has given me some time with Levi at home in the evenings and a proper bed to sleep in. We are hoping to be out of the ICU by Tuesday. Please pray the extra fluids leave his body, especially the lung area. I’ll try to do better at keeping you posted.

BP and ECG

2008-12-12T00:00:00.002-05:00

Luke's BP and heart rate are on the lower side tonight. I've been praying for God's touch. I read the word and believed that God has already touched him ..."and the people all tried to touch him, because power was coming from him and healing them all." Luke 6:19. It is just passed midnight, and after about an hour, Luke's BP is climbing up --Praise God! God has really taught me the power of standing on His word and calling His name, and most importantly believing that as it is written, it will be done. Very hard process, especially when you're child's life is on the line. But there's no one else I'll rather call from my vantage point. Oh by the way, his ECG is slowly increasing as well. Please stay in prayer for Luke.

Today was a rough day for a couple of parents, as they had to witness their children near extreme critical status. I had to put my arm around a dad who saw his 14-month old daughter get put on life support. I have seen ER on TV but nothing close to the reality I see here at ICU. I just don't know how people face this without God. I know I will be lost without him-- as the song "I can't even walk" that we used to sing in our church, if not for Him and the people he sent to help us through, I can't even imagine how this journey is possible for Jen and I.

I CAN'T EVEN WALK

I thought number one would surely be me,
I thought I could be what I wanted to be.
I thought I could build on life's sinking sand
But I can't even walk without You holding my hand.

I can't even walk without You holding my hand.
The mountain's too high and the valley's too wide.
Down on my knees, I learned to stand.
And I can't even walk without You holding my hand.

I think I'll make Jesus my One and my All
From now on when in trouble, only His name I'll call
And If I can't trust Him, I'll be less of a man
'Cause I can't even walk without You holding my hand.

There's so many times a day that I think about all the wonderful people we were privileged to have around us. I thank God for all of you and nothing that we can say or do will ever capture what you have been to us in getting through each day of this journey. Your prayers, meals, words of encouragement, comments on the blog, donations, friendship, time, and steadfastness have shown us how much love can heal. I remember my trip to Sri Lanka after the Tsunami, and in my mind a simple act of love, how much it impacted the children that were devastated. Like Jen, I'm more accustomed to giving and it is humbling to be on the receiving end. Life is but a shadow and it passes by so fast, and I think what matters in the end is how much difference we made in each others lives. With that prophetic thought:), I'm going to try and get some sleep. Good night!

Posting Some Pictures

2008-12-11T11:32:00.007-05:00

I just wanted to post some pictures for you all to see before I leave for the hospital.

Uncle Michael finally gets to visit Lukey.

My sweet, precious Lukey

Lukey gets a visit from Santa, and Santa leaves lots of gifts for him.

Levi gets to see santa at The Teardrops to Rainbows holiday party. I overheard him asking for a football helmet. Santa said he would tell the elves.

Lukey has been doing well last night and this morning. Please keep him in your prayers. Uncle Michael is now recovering at home, please pray for a speedy recovery so he can be home with his family for Christmas.

Wednesday Evening at GUH

2008-12-10T17:26:00.003-05:00

Luke had a good day today. Thank you for your prayers. His BP and heart rate stayed stable, and the new liver is making progress. I'm believing that he's going to have a good night and that I will get some sleep in my new found recliner!

This afternoon Luke had his first picture taken with Santa. Although Luke was sedated and didn't get to sit on Santa's lap for the picture, I'm convinced now that Santa is real and he comes by when you're sleeping... but you must be good! Much thanks for Fairfax Police Officers for organizing that event.

Michael was discharged from the hospital this afternoon!! Jen was giving him a hard time about his new look :) Thank you so much for your prayers and please continue to lift him up as he recovers at home.

They up the sedation on Lukey, so I haven't been able to make eye contact with my trooper today. I can't wait to hold him soon. I trust in the Lord for his healing --Lukey is cancer free, I believe that in Jesus name. I pray for those children that were succumbed to this monster and let peace be still for the parents as they cope with the loss of the baby during this season.

God Bless you and your family.

Update on Luke

2008-12-10T10:03:00.005-05:00

Luke held on to stable BP levels and had a fairly good night. Thanks for your prayers. This morning his ECG (heart) rate is on the low side and they are keeping a close eye on that. I anxiously pray for Luke to do well today. It is a daily walk and I do not want to get too ahead but I claim in Jesus name that he's home for Christmas! Also, as I noted yesterday, I believe in Luke to do well enough that they will take him off of the ventilator by tomorrow evening. Please pray with me and believe that it is done.

Overnight he's fluid output was good and we need that to continue. His glucose level was high, as they started the TPN (liquid food) yesterday. I think the dr will make the adjustment there this morning. He's breathing, immunosuppressant levels, CVP, etc need some improvement today.

All in all, he's stable and slowly progressing. Today will be a great day for Luke -- in JESUS name!

Michael is doing much better today. He's my All American hero - Life saver (Luke and a recipient on the list), 10 yr Army veteran, father, husband, and one of the most humble people I know. If you have an opportunity, please send him a card with a word of thanks --20423 Middlebury Street, Ashburn, VA 20147. He reminded me of the price Jesus paid for me! Also, I honor Ellen and Emmy Lou for their sacrifices as well. Jen and I (of course Luke) are ever so grateful to them. Thank you in advance for joining me in showing love and appreciation to this great family.

Please pray for our steadfast team -- prayer warriors, Levi's care helpers, meal providers, well wishers, etc. We thank God for you and pray that God's favor will be with you and your family.

I Love my wife for her courage and prayers. I can only imagine how Mary felt, seeing her son suffer and pay the ultimate price -- no comparison to our journey but these are life lessons I can learn from this journey. Luke's cancer is 1:million children but God's sacrifice for over 6 Billion people and counting (just a random thought!). Please keep Jen and the baby in your prayers. She's always my love and my help mate.

With love and sincere appreciation.

Fernando's

Blood Pressure Levels

2008-12-09T19:46:00.004-05:00

Luke's BP levels were fluctuating even after the morning episode. We had requested prayer, and all of you were praying for us. Since about 5pm, it had started to steady around 90, which is great. Praise God!! Thank you CCC and Luke's friends all over the country and the world for praying for our trooper. Your prayers continue to lift Luke up and please keep them as desperate and as fervent as possible -- "then hear from heaven their prayer and their plea, and uphold their cause" 2 Chr 2:35

I'm praying that we will have an uneventful night and Luke continues to improve. Let's believe together that in the next couple of days... Luke will be off the ventilator, be able to off load over 3 liters of liquid from the body (right liquid balance), continue to have good liver functions, no viruses or flu symptoms, steady bp, and a downgrade from ICU -- Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours. Mark 11:24

Also, please pray for all the children here at the hospital and all around the world that are fighting for their lives. I see the stress of the fellow parents-- they are fighting a good fight with courage. Some of these children have never seen the day light. Parents have fought long and hard, and are weary tonight. Please pray that God will send comfort and strength.

Tuesday Morning

2008-12-09T11:24:00.002-05:00

Luke has been doing well all the way until this morning, where we had a major ER type of atmosphere in the room. His blood pressure dipped and kept going down. They had to give him about 800cc of liquids and medicate him with BP enhancers. I was nervous to say the least, but as I have done in the last 4 months, I held on to God's word. He hasn't forsaken me and has always come to my rescue when I called on Him. He's my strength and ever present help. He's my fortress and my hiding place. After about an hour of the drs, nurses, and medical staff's hard work, and my cry out to God, Luke's BP went up and stabilized. At the moment, we have Dr. Fishbein and ultrasound tech going through scans of Luke's tummy to figure out what took place this morning and figure out if there was any damage to his new liver.

Please continue to keep Luke in your prayers. As you know this is a major surgery on a baby and per our PICU dr, he's progressing well but not "out of the woods" yet. We always trust in God's report but God sure trust us in our ability to lean on Him!!

In the last 4 months I've learned a lot about people and life. I'm more encouraged about people now much more than before. About life, well, God didn't lie when he said in John 16:33 "These things I have have spoken to you, that in Me you may have peace. In the world you will have tribulation, but be of good cheer, I have overcome the world." God has sent great people our way to help us get through this storm. Our daily peace comes from the relationship with God, and one thing I can tell for sure is that your prayers have made a major impact already in this journey, THANK YOU! When you go through hell, it is nice to know that heaven is hopeful with people like you. Please keep Luke in your fervent prayers - pray for

Luke's new liver to continue to function well
Stable blood pressure, pulse, CVP, etc
All the drs and medical staff for wisdom and direction for Luke's care
Daily peace and rest for Jen (and the baby!), Levi, Luke, and I
All our helpers - God direction and God's blessings for their sacrifices

I cannot say enough about my brother-in-law, Michael. He traded places with me giving Luke a life - when my blood and liver were ruled out. His blessing is eternal and his love is the greatest human love of all. I pray for him and thank God for the progress he has already made since the surgery. The sacrifices his wife, Ellen and their 18-month old daughter, Emmy Lou are making cannot be repaid. We are ever so grateful to them! Please keep Michael, Ellen, and Emmy Lou in your prayers. Pray for a speedy recovery and reunion.

Update: Ultrasound was reviewed by Dr. Fishbein and it seems like all the vessels are working good. Praise God! They are monitoring the BP, and trying to get the liquids out of his body slowly. He will be on the ventilator for two more days, I think. And his food will resume tomorrow through a tube. His BP is fluctuating and we need urgent prayer.

Blessings!

Ben

Sunday Update

2008-12-07T12:48:00.002-05:00

Last night I went to the hospital to see Lukey and Michael. Lukey is doing good. The liver function is good and they were just trying to get his blood pressure stabilized. He woke up while I was there and put his arm up on his forehead. They quickly gave him more sedation so he won't move around. He looks much better, just a little puffy. He is retaining a lot of fluid. Because he has so much fluid around his lungs, they don't want to try to take him off the ventilator. They want to wait until he gets rid of some of the excess.
Michael was not feeling so great last night. He was having a lot of pain in his stomach. The Dr. said that they used retractors to hold his stomach muscles open during surgery so it is not surprising that he is having painful spasms in his stomach muscles. They tried to get him to swallow a little ginger ale and his muscles all started spasming. I felt very badly that there is nothing I can do for him. The good news is they moved him out of the ICU last night and into a room in another building. The woman who was next to him in the ICU was a serious problem. Not to be mean, because I am sure she was suffering, but she was never quiet. He wanted out of there so badly. Now he is sharing a room with another liver donor. I am about to head out to Georgetown to visit everyone for awhile. My mom flies in tomorrow evening..thank God! I'm sure Michael will feel much relief when she gets here.
I will continue to keep you posted their progress. Thank you for all your prayers.

Latest Update

2008-12-06T15:48:00.003-05:00

I just spoke with Ben and he gave me the update. What the surgeon thinks happened is that the liver was settling into position, and during that process one of the vessels formed a clot in it. The blood flow had actually started to improve before he went for surgery, but Dr. Fishbein wanted to be absolutely sure about it so they went ahead with the surgery. He was in for about two hours and it looks like everything is going well now. They will do another blood test in about an hour which gives them some information they need. Dr. Fishbein said the liver has really settled in now, so they could see how everything is working in that position.
Ben told me that Luke woke up this morning and looked at him. He said he lifted his arm up, and then started to try to pull out the tubes and things. They had to sedate him again. My baby just wants to wake up and be unhooked. I got a status report on Michael too. He is having a lot of dizziness so they are going to try a different medicine to get it under control. Ben sounded very tired on the phone. He will call me when they have the results of the blood tests. Levi is really missing his daddy, so I think we will drive out to Georgetown this evening and drop off some food and my brother was wanting his phone and Ipod. Thank you for all your prayers. We appreciate them so much.

Transplant Update

2008-12-06T10:06:00.002-05:00

Sorry I didn't get a chance to update last night. I had a very hard time last night after seeing Lukey. When we were finally able to see him, I just burst into tears. The ICU is a very busy and stressful place to be in...and loud. When we went into the room there were nurses and a doctor and respiratory therapists in there. So many machines...all beeping and alarms going off and my little baby just laying there hooked up to so much stuff. I could not handle it. I thought I was going to pass out. Just thinking about it right now makes my heart start to race. I had to sit down and try to breathe better. Needless to say, I came home last night. I was going to go rest at the Ronald McDonald House, but Ben said I should just go rest at home with Levi and he would stay with Lukey and call me if there was anything. I felt like a deserter. I had gone down to see my brother and he was in a lot of pain and feeling very nauseous. I felt so out of control and helpless, I just could not handle it. The Dr. said that everything was going well. The first few hours after a transplant they have to watch very closely and try to balance the fluids in his body and watch what is coming out of the liver to make sure there is no bleeding. I have been fighting a nasty cold paired with evening nausea and too much stress. I came home and slept. This morning Ben called and said that they have to take Lukey back to surgery. One of the vessels isn't allowing blood flow, so they have to go back in and see why that is happening and fix it. It's not rare for this to happen I guess, they said it is common. I just spoke with my brother on the phone and he is feeling better than yesterday. That gave me some relief. Let's just take Lukey to the Lord in prayer and pray that the vessels will all work and allow blood flow. Let's pray for his body to accept the liver and for a quick recovery. Pray for a quick recovery for Michael. Pray for Ben and John and Dileep who are constantly posted at the hospital watching and waiting. And please pray that God gives me strength to get through this. I need to be strong for my baby. I'll update after I know more about Lukey's surgery today.

Out of Surgery

2008-12-05T18:34:00.002-05:00

Lukey is out of surgery. The surgeon came out and spoke to us about the surgery. He thought that it went very well. He said it was the best decision to do the transplant because the tumor was a really bad one. It had spread to the vena cava, so part of that had to be removed. Dr. Fishbein said he got really good margins and that he tested the lymph nodes for cancer cells..there were none. He said they got all the cancer. Due to some creativity in attaching the new liver, Lukey will have to remain sedated on the ventilator for at least two days. They don't want the liver moving around. Once it has had a chance to adhere and other organs have come in around it they will take him off the ventilator and slowly start waking him up. We have not seen Michael or Lukey yet. We are still waiting. They are both in their rooms, but still getting situated with the machines and hook-ups. I will update later on tonite in more detail. We thank you for all your prayers and encouraging words. Lukey is cancer free and we Praise God for it!! Love to you all.

Surgery Update 2:50pm

2008-12-05T15:05:00.002-05:00

The surgeon just came out and said that Michael is done. They are just closing him up now. He said they got the liver out and it was a very healthy looking piece of liver. He will going up to the ICU where they will take the breathing tube out and I can see him in about an hour. The Dr. said that they had just started putting the liver in Luke and it would be about three more hours for Luke. The patient advocate then came out and said she had just peeked in on Luke in surgery and everything was going well. I will continue to update as I know more. Thank you all for your prayers. I feel more at peace than I normally would in this situation.

Surgery Update

2008-12-05T12:36:00.002-05:00

Both Lukey and Michael are currently in surgery. Lukey went in at 8:45 am for a little exploratory look first. We sat with Michael until his part was a go. Michael went in at 10:30. The last update that I received was that Lukey was kinda in a holding pattern until they got the liver portion out of Michael. They had just started on Michael, so we are just waiting. She said that vital signs on both of them were good. I cried when they took Lukey from us. I just said a prayer, Lord I put him entirely in your hands. We then went and sat with Michael. Our good friend Dileep had been sitting with him all morning and keeping him company. That truly meant a lot to me. I will continue to update this as we receive more information. Please keep Lukey and Michael in your prayers today.

Urgent Update

2008-12-03T22:09:00.002-05:00

We will be admitted into Georgetown hospital tomorrow morning at 11:00 am. Michael and Lukey will go into surgery Friday morning between 7-8 am. We request urgent prayer for both Lukey and Michael as they go into surgery. We pray for a quick recovery and no complications. I also ask for prayer for Ben and I. We need strength to get through this time. I know I should not be afraid, but as a mom and a sister I am very nervous about this. We appreciate your prayers. Will keep you in touch.

Life Update

2008-12-03T10:14:00.006-05:00

I hope everyone had a fabulous Thanksgiving. We have a lot to be thankful for. I say any Thanksgiving where I don't have to cook, is a good one. Our good friends John and Gilian surprised us with an entire turkey dinner for lunch. All we had to do was heat and eat. Never had it so easy. Then at 5pm my brother flew in to Dulles and at 6pm we had another dinner at a friends house in Maryland. It was a full day...in more ways than one. I love the mashed potatoes and rolls with green olives stuck inside! Yeah...that's not a pregnancy thing...I've always loved it. John and Gilian trying to carve the turkey.

The day after Thanksgiving we got our Christmas tree. I was sad that I did not get to go and be a part of picking out the tree this year, but it was way too cold for Lukey. Ben and Levi and my brother went and cut down the tree. They picked the perfect tree. Levi decorated it with all the shatterproof ornaments he could get his hands on. You can imagine how "lovely" it is! Levi say's it's the best tree in the whole world and that is enough for me. Gone are the days of making my Christmas tree a matching theme or even just pretty. For the next 10-15 years it's all about the boys and hopefully the little girl baby growing in my belly.

Speaking of babies. I finally had an ultrasound to see how far along I am. I am 12 weeks. This has to be a girl. Levi believes it is. He wants to name her Lily Lou. I said Lily, yes but Lily Lou sounds strange. I got to hear the heartbeat and see "her" moving all around. It is always an awe inspiring sight to see them on ultrasound.

Last weekend we took my brother to DC to see the sights. It was pretty cold and kind of a rushed tour because I forgot to bring a bottle. He got to see most everything. The White House, the Capitol, Washington Monument, Lincoln Memorial, and the Vietnam Memorial.

Levi looking quite cold.

I love this hat! He looks like Elmer Fudd.

Michael at the monument.

So now Michael has finished all of his tests and we can go into the hospital as early as Friday for the surgery. We got a call after Thanksgiving that they had two livers and they were 75% sure we would get one. Well we didn't. I wish they wouldn't call unless they were sure we were going to get a liver. It's going to be a long road yet. I will try to keep the updates coming. Lukey will be in the ICU for a few days, so I might be a little slow at first with the updates. You never know. I really hope to be home for Christmas. Love to you all, I need to go take care of a very fussy little guy.

Day of Thanksgiving

2008-11-27T07:58:00.004-05:00

We want to say THANK YOU for your continued prayers and support. You lifted us up when we were down, and with your prayers we were strengthened and calmed, and we were touched by your visits, meals, kind words, cards, gifts, and friendship -- only God knows how much impact you had in helping us weather the storm. We are blessed and THANKS!

"The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me." Mat 25:40

We wish you a day of blessings and much peace. May the Lord make His face shine upon you and your family.

Happy Thanksgiving.

Love,
Fernando's

What a Morning!

2008-11-24T14:41:00.003-05:00

We got a call at 3:30 this morning. "We have a liver." I happened to be up feeding Luke at the time. I heard the phone ring and I immediately knew what it was for. I was frozen in my chair. "I'm not ready, Lord". Ben reached the phone, but I couldn't hear what he was saying. He opened the door to Luke's room and looked at me. They have a liver, he said. I immediately stopped feeding Luke because I knew he needed to have an empty stomach for surgery. We kicked into overdrive. Luckily we have a friend staying with us this week. We woke Gilian out of a deep sleep. "We have to go to the hospital". I started packing and getting everything together. I wanted to go in and just hug Levi and say I'm sorry I won't be here when you wake up.
Just as Ben was taking everything to the car, the phone rang again. They said don't leave just yet, there has been a small mistake. We were not the primary recipients of the liver, we were the back-up to the primary recipient. They said if the primary refused the liver for whatever reason, then it would go to Luke. Well...they wanted the liver. We now know that we are next up for a matching liver. Ben wanted me to go back to bed and try to get some sleep. I could not fall back to sleep. My mind was going 100 miles a minute.
It did give me a heads up though. I am spending the day getting all our things in order for a long hospital stay. The laundry is done, the carpets are vacuumed (thanks to Gilian), and the stack of bills and things on my desk are almost gone. Next time they call....I will be physically ready..although not emotionally.
We have started a fund for Luke called Luke's Hope. You have probably seen it on the sidebar. I honestly don't know how people without insurance can make it through these types of things, because even with insurance it is a struggle. We will be doing some fundraising things in the future. Thank you to my brother for doing his Benefit Boot Camp and raising money for Luke's Hope. Thank you to all you who have given to Luke's Hope. We are so very, very thankful. Luke and so many other children are fighting cancer everyday. Some have been fighting for years. These kids are so brave and inspiring. Watching them will make your worse day seem like a walk in the clouds. I cannot complain about anything. We appreciate all the prayer and support we have received. Thank you all so much.

An 11:59:59 God

2008-11-19T20:45:00.007-05:00

We have just passed 100 days into our journey. We met with the transplant surgeon at Georgetown this week. He will be putting Lukey on the list for a liver. Meanwhile, my brother is going to go through the rigorous testing process to be a donor. They want to hold off on the chemo to see if he will get a liver in the next few weeks. They can only hold off the chemo for two-three weeks maximum. If he has to do another round, it will be at least three weeks before he can have the surgery. We are also waiting for a second opinion from Pittsburgh. I still believe God can step in and do a miracle. Dr. Jeffers preached the other morning that we serve an 11:59:59 God. He can step in at the last nanosecond and perform a miracle!

Levi's Super Sib trophy for being a great big brother to Luke
Levi had a Thanksgiving program and lunch at his school today

Lukey has been putting weight back on. He is eating really well and is back up to 9kg. He has lost all his eyelashes and most of his eyebrows, but seems to be clinging on to what hair he has left. He is also extremely active. Diaper changes look like wrestle mania and he barrel rolls across the floor.

Today Levi tried to take a toy out of his hand and he let him have it! I don't know what he was yelling, but it didn't sound good. At least he can stick up for himself :o) I love these days that seem like back to normal. I wish it could just stay like this. I wish the cancer would leave our lives as quickly as it entered.

We have learned so much in the last 100+ days about ourselves, about God, and about others. We probably still have a lot to learn. There are so many good people surrounding us. People praying, people taking care of Levi, people bringing us meals, and so many other things. Each and everyone is important to us. We are very blessed indeed. My song these days has been Casting Crown's I'll Praise You In The Storm. I always think the line "my strength is almost gone, how can I carry on if I can't find you". I've been told I am a strong person. I am sooooo not strong. I never volunteered for this. If I had a choice I would have turned my tail and ran and hid until it was all over. As a mom, you feel very defensive and protective about your babies. My animal instinct wants to hold Luke so that nothing can see him and rip to shreds anything that comes to harm him. I want to grab cancer by the throat and choke the life out of it. Whew..that took some energy to write. But I can't do that physically, so I speak to it. I speak the word of God and I claim healing. I speak the word over Luke and I rebuke cancer in the name of Jesus and that is more powerful than me choking it to death. We press on. We'll make it through. My God is an 11:59:59 God. So, what time is it?

A Quick Update

2008-11-12T22:04:00.002-05:00

A quick post to fill you all in on what we are up to. I'll include pictures in my next post, but tonite I am physically and mentally exhausted. I went to "Mom's Weekend" and had a great time. It was just what I needed, and what a place. Beautiful!! I met so many wonderful and strong women. It really meant a lot to talk to someone who has either been where I'm at, or is battling it right now. We shared stories and websites and belly danced WHOO hoo! Very relaxing...and everyone survived my one night away. Ben kept telling me that everything was great at home and to just relax and enjoy. The thing is, even if it wasn't going great..he would not have told me. He's just an amazing guy.
We went to the clinic and to Georgetown University Hospital on Tuesday. We went for Luke's transplant evaluation. So here's the deal. The tumor has gotten much smaller, but is still on the major vessels. These surgeons could remove the tumor no problem, but due to the location of it there is a high risk of spreading to other organs. I did not realize that because it is on the vessels, the vessels can carry the cancer cells all over his body. The recommendation is a total liver transplant. This will carry many lifetime challenges for Luke, but we believe it is the best decision. The Dr. said that many times they have done a resection, just to have the cancer come back less than a year later. It is much harder to have a transplant after having a resection. We will meet with the surgeons on Tuesday and Luke will go on a list for a liver. We are not sure how long we will have to wait, so meanwhile he has to start another round of chemo. I can't be a living donor because of the pregnancy and we found out that Ben can't because his blood type is B and Luke's is O. My brother has offered to give part of his liver, the offer just chokes me up. It is a gift of life, and just the offer means so much to us. The Dr's prefer to do an entire liver because partial liver transplants are trickier, but we don't want to wait for too long. It's something we really have to think and pray about.
Luke will be on autoimmune suppressants for the rest of his life, but be able to live an otherwise normal life. These Dr's don't candy coat anything for you. They just tell it like it is. If death is a risk...they say so. The Dr. told us several cases of the child dying, which didn't make me feel good, but they want to make sure the facts are known. I'm already scared, I don't need to know anything else. I struggle to make sense of all this. I don't know why God chose Lukey to go through this, but I do know that something awesome is going to come out of it. Job asked his wife if we are to accept only the good things from God and not the bad. He lost everything: family, livestock, his health and yet was still able to say "The Lord gives and the Lord takes away, blessed be the name of the Lord". I want to have that attitude.

Busy Week

2008-11-05T10:43:00.007-05:00

We have had such a busy week so far, and it's not over yet. Monday we had to go to Children's DC for Luke's GFR (kidney) scan. What a nightmare. Getting to the hospital was a challenge. We took a wrong turn on a round about and the GPS led us back through an area that was a little scary to me. I won't even get into the parking. Luke's scan was done in Nuclear Medicine and the tech had told me that because I am pregnant I could not hold him because he was going to be radioactive for a time. Torture. After the three hour test there, we had to go to the clinic for his blood counts and check-up. I asked the nurse at the clinic about not holding Luke and she checked with two of the oncologists who called down to DC and they told me yes I could hold him and love on him, but I need to wear gloves when changing his diaper. It's the same thing with the chemo. I took him from Ben and kissed all over his little face. Lukey's counts looked good, so I can stop giving him the shots..yay!! Tuesday I had to take Luke to Fairfax for another hearing test..the hearing has stayed the same, which is good. Today is our one day of no Dr appts. Levi is in school, Lukey is sleeping, and I have a moment to fill you in on whats going on before I finish folding the laundry. Tomorrow will be a rough day. Lukey has a ct scan in the morning under anesthesia. He cannot have anything to drink or eat after midnight tonight except the contrast. We are looking forward to a very rough night. He eats every three hours usually. After the ct scan he has a ECHO scheduled to check his heart. Friday we go to the pediatrician for a shot to protect him from RSV throughout the winter. He may also get a flu shot as well. So there you have it...we are on the go. Friday we should get the results of the CT scan. All decisions will be made from there. I trust the Lord with Luke. It is completely out of my hands.
Lukey and Levi-Best Friends

I will be going away for a night. "Mom's Weekend Off" is on Saturday and Sunday. It is a weekend for moms of children with cancer. I struggled with whether or not I should go, especially because I am still breastfeeding, but we will make it work. Ben wants me to go and it is just one night. It's at Camp Friendship which is a horse ranch in Maryland. They say prepare to be pampered. I may just sleep the whole time :o) I will desperately miss my little guys, but I do need to take a little time for myself. I'm excited and hesitant.

Me and My Boys

Meanwhile, Lukey is trying to get around the only way he knows how, by rolling. It's hard for him to crawl because he has the line and tube hanging from his chest to his belly button. So he rolls. He rolls over and over and over until he gets where he wants to go. Levi calls him roly poly. He might be a little delayed in some of his development because of this, but he'll catch up pretty quick. He says mama!!! Not dada! He's just precious. Levi is so good with him too.

Ben, Lukey, and Neil Armstrong

A little bit of yard work

Remember how fun this used to be?

Please remember us tomorrow in your prayers. We believe that the tumor has moved away from the vessel. Thank you so much for everything. Love to you all!

Life's Little Surprises

2008-10-27T20:48:00.011-04:00

I know it's been awhile since my last update, and I don't want Ben getting too comfortable posting on my blog :o) We were in the hospital for 3 days and came home last Friday. Luke had three days of chemo. Cisplatin on day 1, Doxirubicen on days 2 and 3. Very intense series of chemo. He did absolutely great. My boy is so strong and so blessed. He has had NO vomiting or other visible side effects. I have to give him a shot of Neupogen everyday to keep him from crashing like he did last time. Now they are making me give the shot like a shot instead of in a catheter. I actually have to stick it in his flesh. I HATE IT! He still loves me even after I have to hurt him a little. We went to the Dr. this morning and Luke's counts look really good. We now wait for 2 weeks and then he will have another CT, Ultrasound, and Echo. I believe with everything in me that Luke will be fine. There will be no transplant.

It can be very hard to deal with all these emotions and changes in our lives. I often think that I can't handle any more than I already have on my plate. After all, God said he would not put more on us than we could bear...right? I think God has seriously overestimated me. Friday night I found out that I'm pregnant. Evidently you can get pregnant on "The Pill". Fear gripped my heart and I had a serious breakdown. God, what are you doing to me? Can I handle this? It was an overwhelming feeling of fear and inadequacy. Afterwards, I came to peace with it. A baby is always a miracle and I know God will give us the strength to get through this also. We are now looking forward to a healthy baby sometime this summer.
We have been so blessed by so many people. So many have brought us meals and toys for the boys. I hope that one day I can repay the kindness we have received from so many. Thank you so much to our Pastor and Sis. Mitchell for their constant prayers and our church who prays continually for Luke's healing. We are all going to witness a miracle. Thank you to Moby and Rengas for your selfless giving of your time. Moby is our angel. Thank you Jesus for being so faithful. You are EVERYTHING to us!

Moby and Lukey at the hospital.

Moby giving Levi his breathing treatments.

Rengas visits for the weekend!

Sweet Angel

A BEND IN THE ROAD

2008-10-24T11:46:00.004-04:00

When we feel we have nothing left to give
and we are sure that the song has ended.
When our day seems over
and the shadows fall
and the darkness of night has descended.

Where can we go to find the strength
to valiantly keep on trying
Where can we find the hand that will dry
the tears that the heart is crying.

There's but one place to go
and that is to God
and dropping all pretense and pride.
We can pour out our problems
without restraint
and gain strength with Him at our side.

And together we stand at life's crossroads
and view what we think is the end.
But God has a much bigger vision
and He tells us it's only a bend.

For the road goes on and is smoother
and the pause in the song is a rest.
And the part that's unsung and unfinished
is the sweetest and richest and best.

So rest and relax and grow stronger
let go and let God share your load.
And have faith in a brighter tomorrow.
you've just come to a bend in the road.

~ Helen Steiner Rice ~

Hope this inspires you as much as it did me.

Blessings,
Ben

One day at a time...

2008-10-18T19:50:00.002-04:00

God is our strength and ever present healer. In HIM alone we will trust. The Holy Spirit helps us in our weakness and guides us everyday.

Jen is right, when things are bleak and seem almost impossible, God steps in. We know this for sure... through God all things are possible. We give Him praise and by faith receive His miracle.

I want to thank everyone for your continued prayers. We pray for your steadfastness, and may God bless you and give you a word to share with us in our valleys. Thank you for taking this journey alongside us. Please keep posting your comments on this blog. I can't even begin to tell you how comforting to know you’re praying and thinking of Lukey and our family. We read them ever so eagerly!

I want to say how much I love my wife. She's so strong and such a solid rock to me and our children. We are going to fight a good fight and I’m encouraged by my wife’s strength and determination.

God, you're our strong tower and ever present help, and we are desperate for your touch. Lukey needs you. We will not let the enemy steal our joy, and you gave us Lukey and we have already dedicated him to you. Keep him strong and safe, and give us strength to take it one day at a time.

Blessings,
Ben

The Good, The Bad, and The Ugly

2008-10-17T21:30:00.005-04:00

I realize it has been a week since I have updated. Let me tell you...it has been quite a week. We went into the hospital for a fever. Turns out Luke had the Rota virus. We were put in a room in isolation. We were not allowed to leave our room unless we were leaving the hospital. Whenever someone entered the room, they had to be gloved and gowned. It felt like some kind of weird movie. Ben and I had a good time playing the Wii. I am not normally a fan of video games, but the Wii is so much fun. I worked out my stress in the boxing game...I won! Poor baby Luke, he had bad diarrhea, but he was still a smiley little guy. He got his last chemo treatment while we were in the hospital. Round three is finished. We came home on Tuesday.
Sweet Lukey sleeping

Playtime for Lukey

Now for the sad news. The tumor has not come away from the portal vessel. The radiologist that did the Ultrasound didn't seem to think it would ever come away from the vessel. On Thursday we went to the clinic and met with his oncologist. We are now facing a probable liver transplant. She wants to try one more round of intense chemotherapy. It would be the Cisplatin at an increased dose and another one that right now I can't remember the name of. The Cisplatin is what has caused the hearing loss, so it is likely he will lose more with an intense round of chemo. The new drug can cause damage to the heart, so he will have an Echo cardiogram and several ultrasounds of the heart to keep an eye on it. I have to admit I am scared. I just don't know how much his little body can take. If it doesn't move the tumor away from the vessel he will have to have the transplant. The question is...do we put him through the chemo if he will end up having to have a transplant anyways? I don't want him to lose anymore hearing. I just want my little boy healed. I know that when it looks really bleak is when God steps in and performs a miracle. It looks so bleak to me right now, I am struggling to stay composed. If he does need the transplant, both Ben and I will be tested to be a possible donor. If we go ahead with one more round of aggressive chemo, we will check in to the hospital on Tuesday. I know God is in control of every situation. We have dedicated Luke to the Lord, and trust Him with everything. We need to pray that the tumor pulls away from the vessel. That is so important right now. Please join us in prayer that the tumor pulls away..it has to pull away. Please pray for strength....I am grasping at straws here. We need strength.

Levi and I are both sick. It has been some kind of week. He went to the Dr. and is now on breathing treatments. I went to the Dr. and found out I have a virus somewhat like chicken pox, but different. I thought I had a rash, but I guess not. I don't know where I could have picked that up. No one else got it though and it is almost gone now. We need to stay healthy. Ben has been the most wonderful man in the world. He amazes me all the time. Together we will come through this, we just need the strength to get there. Intercessory prayer warriors needed. Thank you all from the bottom of my heart.

Back to the Hospital

2008-10-11T19:50:00.002-04:00

This morning we were scheduled for a CT scan, and then an unscheduled fever showed up. Luke had been running a slight fever for a day or two. This morning (early) his temp went to 100.9. Once his temp reaches 100.4 we need to take him to the ER. So I called the Dr. and she said to take him to the ER and go ahead and get the CT scan as well. First of all they told us to arrive at the hospital at 7:00 am, but no one even got there to help us until a quarter to 8...GRRRRR!! Then they said to just go to the ER and they would do the CT scan through the ER. Okay so we finally get in the ER and they start on the blood work and vitals and all that. Turns out he is severely neutropenic. His ANC was 69. On Monday it was 1100. 500 is considered very low. So on go the masks and pretty much a quarantine type situation. The CT scan is a whole other story. How do I begin this nightmare story? How many times can I say....it is very hard to start an IV on my child? It is very hard...it is very hard. I had to pin him down while the nurse blew out his first vein and couldn't get it in the second one. Why don't people listen? They said there was no way they could do it. So now this is the kicker...the nurse in the ER used to work in Oncology and said she would put the contrast through his central line no problem. It worked just fine. All that torture for nothing. Then the scan...the tech was not a nice lady. She was in a big ol' hurry and was irritated that he was moving around. I'm venting this so it will leave my mind forever. To make a long story short (too late)...the CT scan came out blurry and he will have to have an US on Monday and possibly another CT scan. Pray for my sanity.

Anyways, Luke is on a couple different antibiotics and Neupogen to boost his white blood cells. He is supposed to have his last chemo on Monday, but they won't give it until his WBC count comes back up. I really don't know when we will get to go home. In all this...God is good and faithful. I thank God for every good day and every bad day. My God is faithful, I call him Faithful, he is so faithful to me....My God's a healer, I call him healer, he is a healer to me!!!

A Change of Plans

2008-10-10T21:10:00.003-04:00

The Dr's office called yesterday and wanted to set up all the appointments right away. Today I took Luke for another hearing test and tomorrow morning he has his ct scan. Monday will be his last chemo for this round. I thought it was strange that they want to get all the scans and things before he finishes this round. The results of the hearing test were disheartening. Luke is still losing hearing in the high frequency. Now his right ear has lost the higher frequency also. Tomorrow Luke has a CT scan at 7 am...which means we have to leave the house no later than 6 am...6am. Saturday is my one day to get some extra sleep in the morning. I guess I have the following Saturday to look forward to. I hope we don't have the same issues with the IV this time, they better just get it right the first time. I can't be responsible for my actions at 6 o'clock in the morning and seriously sleep deprived.
The Dr's will re evaluate for surgery, after this scan. Please join us in prayer that the tumor is GONE, has shrunk, and moved far from the portal vessel. We need to get this out of his body. I want my little boy healed.

Chemotherapy Day 10 Update

2008-10-07T13:48:00.002-04:00

On Monday Luke had his Vincristine treatment. We were in and out of there in two hours....unheard of. All his blood counts look good and his liver enzymes went back into the normal range. His AFP was 1190 a week ago. On Monday it was 1004...not bad for a week. After his last treatment next Monday, he will have another CT scan (Oh Boy), another hearing test, and another kidney function test. They will re-evaluate for surgery at this time. I really believe they will be able to get it out this time. In Jesus Name! Luke has been doing so well..up until about 3:oo this morning. He threw up his entire bottle and then threw-up again at the next feeding. He kept his last bottle down and I will feed him again in a few minutes. Please pray that he doesn't get dehydrated. His spirits are up though and that makes it much easier.
Levi went to the dentist this morning. I am so serious when I say I want to go to a pediatric dentist. They are decked out with kid pleasing attractions. I had fun playing air hockey with Levi while I sipped a delicious coffee from the coffee bar. Levi got to pick a movie and then he wanted them to turn on the overhead trains. Afterwards , he picked out some toys (cars of course), and got a bouncy ball from the machine. Oh yeah..he got his teeth cleaned also. No cavities!! He's only had teeth for about 3 1/2 years so he shouldn't have any cavities. He was such a big boy! Last night Levi would not eat his dinner so I had to call santa (aka Uncle Michael). He ate everything after his talk with santa. He really wants a football helmet. He said his favorite football team is the Stonebridge Bulldogs, the high school by our house. He has become such a little boy...where does the time go?

A Little Fall Fun

2008-10-05T22:04:00.009-04:00

On Saturday we joined our friends Rob and Sandra for a little fun at the Fairfax Fall Fest. What we got was long lines in the sun, a train that kept trying to run us over, $5 cups of lemonade, and an assortment of bug bites. It was all worth it to spend time with friends, which was also made better by a trip to Tony's NY pizza. It was a beautiful day to be outside with the kids, and since Sandra and I found a nice shady, grassy place to rest while the guys stood in line in the sun with Bella and Levi, it was all good. Truly enjoyed the pizza, the salad, and the cannoli...sounds like a lot huh? Yeah..but it was yummy! Tomorrow we go in for more chemo, but Lukey has been doing great. Levi may be coming down with something. He was running a slight fever earlier..please pray for Levi's health. All our health could be affected by one person getting sick. We all need to stay healthy!!

I will let you all know how the appointment went. We should get another AFP tomorrow, because they took the blood for it at the last appointment. I hope everyone had a restful weekend and have a great week. Thank you all for your continued prayers. We are so blessed!

Levi and Bella...so sweet!

Rob, Bella, and Levi. Time out for kettle corn!

Gigi enjoying the grass. Such a cutie!

Anne and Dianna...oops I mean Sandra and me enjoying the pizza!

Levi checking out the firetruck. He thought it was pretty cool!

Lukey kept taking off his shoes and throwing them on the ground.

Chemotherapy Day 3 Update

2008-10-01T17:37:00.008-04:00

I'm late to update again due to an unexpected trip to the ER, being totally exhausted, and... um life. On Monday we went to the clinic to get Luke's Day 3 chemo treatments. He received two injections of chemo, an injection of anti-nausea medicine, and an hour long infusion of antibiotics. We were there for quite a while. I sometimes wonder how his little body can handle all these medicines. He is doing great though. At the Dr. office we were able to look at the CT scan and compare it to the first one. The tumor has shrunk quite a bit. We also got the latest AFP...drum roll please.....1190!! Can you believe it? The last one was 33,000. To recap the AFP numbers...we started out at 400,000 at diagnosis, then to 190,000, the last one was 33,000 and then this last one 1,190 before starting the third round. The chemo is really working to kill the tumor cells. Normal range is 10 or below, but we are getting there! Back to the trip to the ER. Tuesday afternoon I went to flush Luke's line as usual and it would not flush. That usually means there is a clot in his line. We had to drive to Fairfax Hospital ER to be seen. The nurse tried to flush his line and could not and did not want to push the clot into his blood stream. Then another nurse who is familiar with central lines came in and tried a smaller syringe. It flushed beautifully. She said sometimes the pressure is too much and it won't flush. We thanked God that it wasn't anything serious.

He looks so little in this bed. Such a happy little guy.
The only pictures I can get of both of us, I have to take myself :)

PRAISE REPORT! In the last post I requested prayer for Luke for the nausea and vomiting and his appetite and I have to say THANK YOU JESUS! He has had no vomiting other than the one time in the hospital (which was probably from smelling the hospital food) and he is still eating very well! Thank you to all you who are praying for him. This makes me certain that God is protecting his kidneys and hearing also...Thank you so much. Now I ask all you prayer warriors to pray that the tumor moves away from the portal vessel, so the surgeons can get good margins for resection. We won't need to go back for more chemo until Monday. I hope everyone is enjoying this Fall weather. I'll update again soon..never a dull moment. Thank you for your continued prayers and words of encouragment, it means so much to us.

He just loves to sit up and play with toys. Just like Levi.

He was looking at himself in the mirror for a loooong time. It was so funny.

At the Dr's office. It's hard to keep a baby entertained for 4-5 hours.

Chemotherapy Round 3

2008-09-28T17:14:00.002-04:00

We are in the hospital. Luke had his Cisplatin yesterday and we are just finishing out the 20 hours of post chemo hydration. He has 12 minutes left then he has to have a blood transfusion, then we can go home. It may be very late by the time we get home, but believe me it is way better than staying in the hospital. Luke and I got hardly any sleep last night. The rooms are much nicer this time around. The department has moved into its new floor in the children's wing. The rooms are equipped with a flat screen TV, a Sony PlayStation, and a Nintendo Wii. My only complaint is all the windows. At night, with all the lights off, it is still bright enough to read a fine print book. No peace. Luke has done very well. He threw-up earlier, but he is still eating. I lied about my only complaint being the windows, because I just thought of another. The food. So bad..it probably makes peoples recovery time longer. My wonderful husband brought me some dosa today. Yum-o. Four minutes left.
The dogs got groomed today, so I can't wait to go home and give them some loves. They were a little smelly. I love the idea of groomers coming to your house. Pets really have it good. Sometimes I think I would rather see a veterinarian than a doctor. No waiting time, called by your first name, you get scratched and talked nice to, after all is said and done...you get a treat. Yup, they really have it good. I am seriously sleep deprived. Well...they are three minutes late in taking him off the IV. This would not happen if we were at the vets :) I will update tomorrow after his next two chemo treatments. Prayer request: no nausea and vomiting, protection for his hearing and kidneys, continue to eat well, and strength for the day. Love to you all.

Decision Made

2008-09-26T20:03:00.003-04:00

I just got off the phone with Luke's oncologist. I only waited ALL day. The decision has been made to proceed with the chemotherapy treatments. Yeah..I know..I took a cry break for the last 20 minutes. They say the tumor is just too close to the portal vessel. I know it's the safest decision for Luke, but watching him go through the chemo is so hard. They want to shrink it even further. She said it's not likely that it will shrink enough with just one more treatment, so we will need to do two more. I pray that God protects his kidneys and his hearing. He has just gotten back to eating as much as he did before. Two steps forward..five steps back. We check into the hospital tomorrow, but should only be there one night. Here we go again...Lord give me strength!

The Waiting Game

2008-09-25T11:14:00.004-04:00

I know I said I would update yesterday, but we had no new news. We went to the appointment yesterday with the expectation of finding out whether or not we would do surgery or chemo. We still don't know. Here is what we do know. The tumor has shrunk to half the size of what it was. Hooray! His kidney function test showed a decrease in function. Not so Hooray. His blood tests look good except his hemoglobin is still low. If it does not come up on its own, he will need another transfusion. The Dr. said to call her today at about 10:00am. We got off the phone with her a little bit ago. We still have no answer. She is getting multiple opinions on the ct scan from Radiologists and surgeons and other oncologists. The tumor has shrunk, but it is still pressing against a large artery (I can't remember what she called it). The surgeon that did his biopsy is looking at the scan today with some other surgeons to see if it can safely be removed. We will talk to the Dr. again tomorrow at 3:00 pm. Until then, we wait. I know she would like to get the tumor out. Due to the decreased kidney function and high frequency hearing loss, I think she does not want to go into more chemo right away. She also said we may be able to just do two rounds of chemo after surgery..it's possible again. YAY! They are taking their time to be absolutely sure it can be removed without any harm to Luke.

These days at home are so great. Luke is eating great and it makes me feel like we have some normalcy. I know in the back of my head that things are about to change again. I got out all Luke's fall and winter clothes, which is code for Levi's hand-me-downs. I'm getting those washed and put away. I still have to shop for Levi's clothes. Let's see 5 pairs of jeans and a bunch of shirts and sweaters. Boys are pretty easy. Levi has been dressing himself, and I don't say anything when his shorts are on backwards because he feels like a big boy. Well...it seems like I've got diaper duty so I will let you all know what happens tomorrow afternoon. Please pray for wisdom and guidance for the Dr.'s, surgeons, radiologists, and everyone involved in making the decision for surgery. Thank you all so much.

Finished Round 2-Hooray for Luke!

2008-09-20T17:46:00.009-04:00

We are finished with round two and had all the tests done this week. Thursday he had a kidney scan and a hearing test. We will find out the results of the kidney scan on Wednesday, but the results of the hearing test were a little disappointing. Luke has lost some hearing. The highest frequency is gone. This should not affect his speech development or anything, but he has four more rounds to go, so we really need to cover him in prayer. It was kinda explained in such terms as, save his hearing or save his life. I believe the Lord can do both. The CT scan we had on Friday was a doozy. We get there super early and he has to drink a contrast. Then we sit for a couple hours. When we finally are taken back, they tell us they need to start an IV. I thought they could use his central line, but apparently the contrast they inject is not compatible with the line. I tell them right off that it is very hard to start an IV on him, send us someone good. Okay, so the lady they send clearly can't find a vein, but decides to stick him anyways. She sticks it in and pulls it out at least four times before saying, "I can't get it they will have to get someone else." My poor little guy is screaming and my blood pressure is sky rocketing. They take us to the recovery area where the nurses say they are "the best" at starting IV's. Happily I believe they are. It was extremely traumatic for Luke and then he had to lay still to get the scan. Luckily he was so drained from the IV fiasco he pulled his blankie over his face and just lay there. Six hours later we arrive home. I can hardly wait until our next CT scan. We will get the results of that scan on Wednesday as well. So Wednesday is the big day. It will be either more chemo or surgery. Surgery is going to be rough, but we think it is better to do it now if possible. Please keep us in your prayers.

Meanwhile, today we took a trip to Great Falls. A beautiful place only 18 miles from our house.

The weather was fine and Levi got to run around. There were lots of people kayaking down the falls. It was a hoot to watch. Luke enjoys being out in the fresh air. It's also safer for him to be outside than inside when his counts are low.

Hope everyone enjoys the rest of the weekend. I will keep you all posted about the appointment on Wednesday. Thank you for your continued support and prayers.

Round 2-Chemotherapy Day 17

2008-09-17T21:13:00.008-04:00

Today Luke had his last treatment in this round. We got to see the Dr. that specializes in liver cancers. We were very happy to finally talk with him. He took his time and explained a lot to us. He did give us some discouraging news, well discouraging to me anyways. We were under the impression that Luke would only have two more rounds of chemo after he has the surgery. He has to have a minimum of 6 rounds of chemo. It's the treatment protocol for this particular diagnosis, there is no way around it. I didn't know that. He has had two rounds, so he has to go through this four more times at least. I cried some today, but not for too long. The only other option now is a complete healing! Praise God!

At the Dr.'s Office

We have our tests and scans set up. Tomorrow (Thursday) we have a Nuclear Medicine kidney scan and then another hearing test. Friday is the CT scan. Next Wednesday the 24th we will go the the Dr. and review all the test results. From there we will either head over to the hospital to start chemotherapy round 3 or we will prepare for surgery. We would like for him to be able to have the surgery and then the follow-up 4 rounds of chemo. We will be fasting and praying for a good outcome from the CT scans. We want that tumor to be so small, if not completely gone, and far away from any major blood vessels.

We have really enjoyed all these days at home. Being in the hospital really makes you appreciate your own house. We are so happy that Luke has been doing so well. Levi still struggles with all the attention that we give Luke, but we do our best to make him feel very special and important.

Levi is so good with his baby brother.

Levi has his own special kissing spot. No one else can kiss Lukey there.

My sweet baby. He loves to play with his toys.

I will update again after his scans on Friday. If you can, please join us in prayer about the results of the CT scan. We are standing on the promises of God!

Weekend Update

2008-09-15T20:59:00.003-04:00

We had a great weekend and week at home. Luke is doing great. To all of you praying for Luke's appetite to increase...thanks!! That is definitely an answered prayer. I can barely keep up with him now. When Luke was first diagnosed my milk supply dwindled to half of what it was. I could not eat and he was not eating, so I stopped pumping as much. Now he is eating every three hours again and I am trying to bring my supply back up. Good thing I have a freezer full of frozen milk, or I'd be in trouble.

Ben spent some good time with Levi this weekend. They went to a high school football game, because Levi loves the marching band. They also went to a cricket match. We went for lots of walks with Luke and enjoyed some fresh air. Wednesday we go back to the Dr. for the last chemotherapy in this round. I am hoping that they have made the ct appointment already, so we have a date set.

Luke is so brave and sweet. He melts my heart with his smile and laughter. Levi keeps him laughing when he wants to cry. I love my boys. We are definitely growing stronger as a family. We don't take anything for granted. When Levi asks me to play cars for the 10th time in a day or watch him ride his bike or play tag...I do it!! If I'm really tired (always), I do it...because life is just too short and they grow so fast. Luke wants to be held ALL the time now. We just hold him, because I can't imagine what he is feeling. I want him to feel secure and comforted and loved. I hold him until my arms are fatigued, and then hold him some more. I wonder if it's how the Lord feels about us. He just wants to hold us close and let us know He loves us. God is so good. I wish you all a great week. I'll update after our appointment on Wednesday.

Chemotherapy Day 10-Round 2

2008-09-10T23:25:00.007-04:00

Well once again I am behind in my updates. I have been so exhausted lately that I choose sleep instead. Imagine that. I take it when I can get it. Luke has gone back to his newborn sleep habits. We are constantly adjusting. On Monday we had a Dr's appointment to check his blood counts and talk about the feeding tube. His counts were excellent. I was told I could stop giving him the Neupogen shots at home, Praise God! There was no immediate need for a feeding tube, Praise God! It was just your average 4 hour Dr. appt. Today we went for his Chemotherapy day 10. He received an injection of Vincristine which went very well. They took him off the IV fluids, thank God! I was getting so tired of carrying around the pack with the pump and bag. The tubing was too long, we had to always be aware of where it was. The other night I went into Luke's room and he was wide awake in the crib just gumming away on his IV tube. I'm glad he does not need it any longer. Thank you to everyone praying for Luke's appetite, it's starting to pick up. Today he will only be a few ounces shy of our goal. He has done very well and only thrown up a few times. He continues to lose a little weight and the Dr. does not want that. As long as Luke does not run a fever, we don't have to return to the Dr. until next Wednesday for his last chemo in this round. The other night I was praying and reading the Word of God aloud. I was reading in the book of Acts when I just came to a scripture that I know God intended for me to read. Acts 3:16 "...It is Jesus' name and the faith that comes through him that has given this complete healing to him, as you can all see". Then I read Acts 4:10 "It is by the name of Jesus Christ of Nazareth, ...that this man stands before you healed". I marked these down in my Bible. Healing confirmation. God is so good.

Levi started school on Monday. I was so sad that I could not be there to take him to school on his first day. My friend Moby took him. I asked her to get some pictures of him, but he was so excited he just would not be still for any pictures. He was so happy to start school and see all of his friends again. I signed Levi up at the SuperSibs site. It's an organization that supports siblings of children with cancer. What a great idea. They sent him a big envelope with his name on it. He got a ribbon, an arm band, and some temporary tattoos all telling him what a great big brother he his to Luke. He also got a magnet with all the emotions on it, so he can show us how he is feeling. It changes all the time. Sometimes he's sad, 1 minute later he's happy, then he's angry. The thing is, I know he is going through all these emotions and he doesn't really know how to deal with them. SuperSibs sends letters from other siblings and lots of information that is age appropriate. He loves feeling important and getting mail. He is pretty involved in what is going on too. He knows now to wash his hands and use anti-bacterial hand cleaner before touching Luke's hands and face. He loves to entertain his baby brother too. When the home health nurse came here to hook up the IV, Levi had lots of questions for him. He asked about the central line and what to do when the IV was empty. He's a very smart little guy. I guess we are all learning a lot.

In the car going to school

Levi in his new class

Playing with Moby

Thank you for all your prayers, phone calls, encouraging cards, and meals. Lets continue to claim that healing in Jesus name!

Chemotherapy Round 2

2008-09-05T21:10:00.002-04:00

Well we got home from the hospital on Wednesday, but I was so exhausted that I did not update the blog. The chemotherapy days 1-3 went well. He received three different drugs in three days. This is usually the toughest time, because the drugs he received are strong. He has had less vomiting and no diarrhea. They let us come home on Wednesday although he has to be on IV fluids here at home. One more thing to add to my nursing skills. Ben is very good about putting the tubing in the IV pump. He's a natural. They are trying to prevent the dehydration he experienced last time. It takes a toll on his kidneys and bladder. We have gone a full 24 hours with no vomiting!!!! Last time he vomited about 4-5 times a day. This is an answered prayer. He still needs to be eating more though. He needs to be taking in at least 24 ounces of breast milk a day. Today he has had 12. Monday the Dr. will determine whether or not to put a feeding tube in. Please pray my boy will start eating again. He used to eat 32 ounces a day. My chunky monkey. He just needs to double what he is eating now. I know he can do it. He won't eat solids either. The texture I think. In the hospital I let him gum a shortbread cookie. He went to town on that cookie. Maybe that's the way to go :)
I'm sad to say that the little mans hair is starting to fall out. The back of his head had been rubbed away. He leaves little hairs wherever his head is. His lashes seem to be falling out as well. That's okay though because it will grow back and he's got good genes. Mommy and daddy have pretty thick hair. Levi is starting school on Monday, and very excited. Ben and I will be going to the Clinic on Monday for lots of blood work and a check-up and then again on Wednesday for Chemotherapy day 10, his Vincristine. Then he will have one more injection the following Wednesday (Day 17) and then a barrage of tests. They will do a CT scan, a kidney scan, a hearing test, liver function, and of course lots of blood work. Then the Dr's will determine whether we can go ahead with surgery or do more chemo. Of course I am not bypassing the believed course of action, a total and complete healing!!! We are standing on the promises of God, and we are not wavering!!! God is in control of Luke's life and this situation.
Thank you to our church family, our neighbors, and Peterites for bringing meals. It is a major blessing. We would all be surviving on PB&J sandwiches if not for your thoughtfulness and generosity. I will update again after out Monday appointment. Everyone enjoy your weekend!!!

Update

2008-08-31T22:41:00.002-04:00

Just a quick note to let everyone know that we will be checking back into the hospital tomorrow to start round two of the chemotherapy. He will get his Cisplatin, which goes in over a period of four hours and then on Wednesday he will get two more injections. If all goes well, we will go home on Wednesday. Please pray that all goes well. The more we are at home, the better it is for him. We have no peace and no rest at the hospital. It is almost impossible for anyone to get any sleep. Moby arrived safely yesterday and we are so happy. She has prepared little meals for us to take to the hospital, so we have been spared from the hospital food.
I must give special thanks to those of you that have been so helpful with Levi. Sis. Deborah took him to the beach for a few days, and he had a blast! Sis. Paula picked him up and took him to the park and the pool, our neighbors (The Sullivans) took him to the pool and to Chuckee Cheese, The Chavez's adopted Levi for the first week we were in the hospital (I will be forever grateful for that), The Smirnoffs (our other neighbors) are having him over for a play date and arranging meals from the neighborhood, and I could go on and on. We are so blessed. I just get choked up when I think of all the support we have gotten from so many friends. I could never tell everyone thank you enough times to really get across how much I mean it. I just pray the God blesses you all for everything you have done for us.

I prayed a special prayer for all our friends in the path of Hurricane Gustav. I pray it is not a repeat of what we all went through a couple of years ago. I pray a hedge of protection around you. I pray the hurricane weakens before it makes landfall and spares the Gulf Coast from devastation. In Jesus name.

I will update you all tomorrow on Day one of chemotherapy round two. We thank you for your continued prayer while we fight this battle.

Luke Update

2008-08-28T20:08:00.002-04:00

Today we had a couple of appointments to go to which pretty much took most of the day. First we went to the Children's Clinic to get his blood counts checked and then to the hospital for a hearing test. Luke has had a really great day today. The results of his blood tests were good. His wbc count was around 400 on Monday. Today it was over 4,ooo. This is really great news because it means I don't have to give him any more shots for a while and now he is no longer neutropenic. All of his other counts look really good also. They had originally told us that he would have to receive blood transfusions throughout chemo, but he has not had to have one in quite a while. We saw one of the other oncologists today, so I was interested to hear what she felt while examining him. She also could not feel the tumor. Luke just lay there, calm and smiling as if he already knows that tumor is gone. We left the office feeling very encouraged.

Then we were off to the hospital for a hearing test. The Cisplatin drug can cause hearing loss, so they will check him after each round of chemo. His hearing test came back perfect. Absolutely no hearing loss in any frequency in either ear. Praise God! Luke has been eating very well and I have not had to give him any anti-nausea medicine today. We are going to enjoy the weekend and then check into the hospital on Monday for his next round of chemo. If he is eating well and keeping food down, we will be able to go home after his next two injections on Wednesday. Then it will just be a matter of a few weeks before they do another ct scan to check the tumor. We believe the report of the Lord!

My very dear friend Moby is flying in on Saturday to help us out for a while. I am so relieved to know that she will be here. Levi adores her and we count ourselves blessed to have her and Rengas as our friends. I may have mentioned earlier that we had hired a nanny to help care for Levi while we were at the hospital and such. Well....she left one day and never came back. She would not even return our calls. We were in quite a bind. So I am ready to roll out the red carpet for Moby. I also want to send out a special thanks to the PeteRites. I think I spelled that correctly. These are Ben's friends from school in Sri Lanka. They have been traveling from Maryland to bring us dinners. Thanks so much! I had the best salmon I have ever had in my entire life the other night. I MUST get the recipe!!! Thank you to everyone who has posted us on your blog and spread the news about Luke. We are incredibly grateful. We ask for continued prayer throughout this next round of chemo and then for the ct scans that will be coming up. To God be the Glory for the things He has done!!

Chemotherapy Day 17

2008-08-25T23:51:00.009-04:00

Well we got to come home on Sunday, which was wonderful. We went into the clinic today for Luke's treatment. He did very well and we had to stay for extra fluids. They really don't want him getting dehydrated because it also makes the nausea worse. The Dr. was examining his belly today and the words that came out of her mouth were"I can't feel it". She then said it was because he was crying and she could not get a good exam, but I held tight to those first words "I can't feel it". I also cannot feel it when I press in that general area. We know that it is shrinking because his AFP (alpha fetal protein) test was around 400,000 at diagnosis, and now it is 190,000. This means the tumor is shrinking. Praise God!!

Luke's WBC count is up and down, so he is getting daily shots of Neupogen. Guess who gets to give him the shots at home? You guessed it. ME! They inserted a very small catheter into his arm so I can stick the needle in and give him the shot without sticking him. There is no way I can stick my baby day after day with a needle. I feel like I'm in some kind of nursing crash course. God is revealing so much to me about myself.

On Thursday, we go back to the Dr. to check his WBC count and get a hearing test. The Cisplatin causes hearing loss, so they check them after each round of chemo. Luke will not lose his hearing!! If Luke's WBC count is up and climbing we will start round 2 next Monday. He will have to be in the hospital for it, and the Dr said that after a few weeks of it we can do another scan and see if we can't remove the tumor at that time! I believe it! That tumor is history!!!

We ask for your continued prayer for healing and to help Luke deal with the side effects of chemo and to strengthen him and our family. May the Lord bless you all for everything you have done for us.

At the Dr's office

In the hospital. Mommy kisses.

Uncle John and Uncle Dileep come to entertain and bring Indian food. Yum

His beautiful smile makes it easier for me to get through the day!

Back To the Hospital

2008-08-22T11:12:00.002-04:00

On Wednesday I called the Dr. because Luke had been throwing up and not eating well. I was concerned he would become dehydrated again. The office was really busy with sick visits, so they sent us to the ER at INOVA Fairfax. We thought we were just there to get fluids, but Luke spiked a fever and had to be put on antibiotics. After 8 hours in the ER they admitted us. It turns out Luke's white blood count is dropping. This is about the time they said it would start to drop meaning he is Neutropenic. He is at risk for infection right now, so they put him on antibiotics and did several blood tests to check for bacteria in his blood and his central line. They are also giving him shots of Neupogen to boost the production of white blood cells in the bone marrow.

The other thing we are dealing with is constipation. This last chemo he had and the one he will have on Monday cause constipation. They want to solve this problem before his next dose on Monday. Luke has been in great spirits. He has been laughing and smiling at the nurses, unless they come to check his vitals. We got a larger room this time with a crib and two beds! Ben and I don't have to share a small hospital bed this time. The nurses and staff here have been great. We will be here until Monday at least. They will give his next dose of Vincristine here at the hospital and then hopefully we can go home. Levi is missing us once again. Ben goes home during the day and stays with him and then comes back here at night. We feel very blessed to have such a great hospital near us and be seen by such a great group of oncologists. The oncologist that will be here this weekend specializes in Hepatoblastoma, so we are looking forward to talking with him.

We are so thankful for your continued prayer for Luke. Please pray for Luke's healing, strength for his body during chemo, reduced time on chemo, strength for Ben and I, comfort and understanding for Levi, wisdom for the Dr's and nurses, and relief from the side effects (constipation, vomiting, pain, etc.). We cannot even begin to put into words how much you all mean to us. We could not do this alone and we really draw strength from your prayers. We love you all and thank you.

Chemotherapy Day 10

2008-08-18T21:26:00.002-04:00

Today we took Luke to The Children's clinic to get his second session of Vincristine. We were there for almost 5 hours. What a busy place that is. When the Dr. was examining Luke she said she thought he was dehydrated, so he had to get hooked up to receive some fluids before getting the chemo. They took us to the infusion part of the clinic. So many children there receiving chemotherapy, my heart broke. Luke did very well though. I held him the whole time and he just sat with me, very peaceful. All of his blood work came back good and they had to check his liver function before giving him the chemo, it was good.

After receiving the chemo, he had to get another hour of fluids. We live about 45 minutes (without traffic) from the clinic and Luke slept almost the whole way home. He is sleeping now and I pray he stays asleep for most of the night. Now is the time when his white blood cell count is going to start to really drop. Levi has a little cold and just wants to hug and touch his little brother. I try to get Levi to understand the situation, but he does not want to. I have a lot of guilt regarding my time spent with Levi. I know he will be fine it just breaks my heart. Well Luke is awake again, so I will say good night. Pray for sleep, peace and sleep.

Homecoming

2008-08-17T19:30:00.006-04:00

Well we were finally able to go home. They told us to try to get back to a normal routine. I have a hard time thinking in the old "normal" way. We are embracing a new kind of normal. I think Luke is doing much better at home. He is in familiar surroundings and seems to be more comfortable. He is still having trouble sleeping at night. He will sleep if he is being held, but as soon as he is put down he screams. I just want to hold him tight forever, but I would never get any sleep. Luke is gradually starting to take in more food. He threw up again today, but has been doing better. We have a home health nurse that comes to the house to help me with the dressing changes and flushing the line of the catheter. It's weird to me to have medical supplies in the house and it being necessary to use them. My brain is still trying to adjust. We all took a walk to the park today to get some fresh air and let Levi play for awhile. Luke enjoyed the walk, he was looking all around and enjoying the motion of the stroller.

Tomorrow we go for another session of chemotherapy. This one can be done in the office, so hopefully all will go well and we will be back at home after the appointment. Then in seven more days he will have another. We are keeping a bag packed in the car for unforeseen delays. We had to hire a nanny to care for Levi in our absence. This is all part of our new normal. I catch myself looking back sometimes and thinking how simple life was before. I think about all the silly things that stressed me out or made me upset. Then I shake myself and look forward to the miracles that God is going to perform in Luke's life. We are so blessed, and take much for granted. All we can do right now is cross one hurdle at a time. I pray for the strength to make it over the next one. About every couple of days, I lose it and I sob uncontrollably. It can feel like too much and I can't stand to see my baby suffer. But once I have it out I feel a renewed strength and determination. Luke will be healed.

Daddy and Luke. His smile makes my day!

Levi loves his baby brother, but has a hard time understanding about the germs and the bobo's on his tummy.

At the park. Luke needed some fresh air and Levi definitely needed to run and jump and play.

Thursday, August 14, 2008

2008-08-14T20:55:00.006-04:00

We thought we would be able to go home today, but Luke needed another blood transfusion today and he hasn't been eating. He went the whole day today without throwing up, which is really good. The Dr. said as long as he starts eating and keeping it in we can go home tomorrow. Last night Luke would not go to sleep. He was very fussy and crying. I felt like crying also because I was so tired. Tonight he will sleep a deep, peaceful sleep In Jesus Name. After his blood transfusion, he perked up a bit and started babbling and smiling. Transfusions are something he will have to receive throughout chemotherapy.

Today they taught me how to change the dressing on Luke's central line. It is a little nerve racking to have to clean and dress something that goes into his heart. Everything must be very sterile. That only has to be doe once a week. I also have to flush the line once a day with saline and Heparin. The nurses are very kind and tell me that soon I will be a pro at it. I just wish my hands would not shake. I never thought I would be put in a position where I had to do such things. God is revealing my strengths through my weakness. He said that He would never put more on us than we are able to handle. I trust the Lord with my whole heart. He is going to bring us through this storm. Please continue to keep us in your prayers.

Holding Luke. He is only really comfortable when he is being held. Reading to Luke. He liked the pop out books the best.

Nana Monica holds Luke.
Daddy gets a smile from Luke.

Chemotherapy Days 1-4

2008-08-12T12:24:00.002-04:00

On Saturday, August 9th Luke started his chemotherapy. He received his first dose called Cisplatin which took 4 hours. Luke slept through it. He has been having the common side effects which are nausea with vomiting and diarrhea. He has a pretty bad diaper rash already, so we are praying for relief from that. Meanwhile, his stomach, that has been so distended is reducing in size, thank the Lord.

Last night Monday, August 11th Luke received his next two chemotherapy injections of Vincristine and 5-FU. He had a rough spot this morning and had been unable to keep any food down, but this afternoon he has been showing us his beautiful smile that we were missing. The smile that I longed to see every morning when we were at home --he used to patiently wait until I entered his room as to say "mummy, thank you for coming to see me, I'm so glad you're here."

It will be seven days before his next dose of chemo and if he can start to eat and keep food down we will be able to take him home between sessions of chemo. We will have to be very careful now to avoid germs and crowds when his white blood cells drop. There is so much that we have to change now and adjust in our lives that our heads are still spinning. On top of that we were given a binder full of information to go through on having a child with cancer! Through it all we are still believing God for a miracle in Luke's life and praising him for it.

Update on Luke

2008-08-10T10:21:00.002-04:00

As most of you know, last Tuesday I took Luke to his 6 month checkup. While getting his routine checkup, his pediatrician noticed a mass on his right side. We were immediately sent to the hospital to get some xrays and an ultrasound. I was concerned, but at the time we thought it might be his bowels or something swollen. The Radiologist came in the ultrasound room and said something that has changed our lives forever. He told us he thought Luke had a large tumor on his liver. We were then sent to Inova Fairfax Hospital. After a battery of tests and scans we received the news that Luke has a form of liver cancer called Hepatoblastoma. On Thursday he had a biopsy and a central line placed in his chest for chemotherapy. He has been having some complications due to the surgery, but is a strong little boy. We did find out that the cancer has not spread to any other tissues or the bones, it is only in the liver and we THANK GOD for that! Last night he started his first session of chemotherapy. It went well and we are believing that God will spare him from side effects. Tomorrow he receives two more chemotherapy drugs. This will go on for the next 12-16 weeks. We are praying that God reduces the tumor sooner than that. Ben and I can feel the strength of your prayers. Please continue to pray for Luke and also include Levi in your prayers, he has been without Mom and Dad and is not sure what is going on. We are just trying to go one day at a time. Thinking ahead too much is overwhelming. Please pray for strength for the day. Luke is in Gods hands, which are the best hands to be in. Things to pray for...Healing in Luke's body, wisdom to make the right decisions for the Dr.'s and nurses taking care of Luke, strength for our family, reduced time on chemotherapy, freedom from side effects of chemotherapy, comfort and strength for Levi and Ben and I. We are praising God through this storm and know we will come out of it stronger.

The Art of Wearing a Sari

2008-08-01T10:56:00.007-04:00

What is a Sari? Six yards of elegance and luxury. They say that a sari is an outfit that reveals as much as it hides. Wearing a sari is an art which requires practice. "A perfectly draped sari makes personality but a clumsily draped sari can equally bring down the look of the sari and spoils the whole appearance of the woman". Hahaha isn't that true with any outfit that's put on clumsily?

I had the opportunity to wear a sari at our very good friends wedding last year in Kansas. Her parents brought it with them from India. It is the most beautiful material and I have to say I loved wearing it. You really do carry yourself differently while wearing one, and not just because the petticoat is too tight and the blouse is tight and revealing. There are three parts to the saree. A petticoat, usually the same color as the sari and reaching to the ankles, a blouse that must be made out of the same material as the sari (and may I say that the blouse is very small), and the sari (six yards of material draped and pleated).

Here I am in my sari (also saree). There are so many different ways to wear a sari. Most ladies wear them according to their state (In India the areas are separated into states). They are also draped according to where you will be wearing it..for instance the office or a party. Sri Lankans also have an entirely different way of draping the sari. On this particular day we draped the sari to cover all skin.

The bridal party. Levi found some new friends. He took off with the brides bouquet earlier. I have to show you a picture of Moby's wedding sari. She looked absolutely gorgeous.

Congratulations on your first year Moby and Rengas! She is an awesome cook. When Ben was traveling a lot and I was pregnant with Luke, she fed me all the time. I miss your Dosa and Biryani and chicken stew and everything else. The wedding was beautiful and I felt very honored to stand in as a sister on the grooms side. Oh and there was this very fine guy there too..check out this picture
I am always looking for an opportunity to wear my sari again. I wish I could get away with wearing one all the time. The sari draping instructional website says " a Saree properly draped transforms a woman to become graceful, stylish, elegant, and sensuous". Yeah I guess I could agree with that. I really liked the part where I just stood there and was dressed by the pros. I could get used to that.

Pizza, Pizza!

2008-07-25T10:27:00.005-04:00

I like pizza! Yummy, that hot,cheesy goodness. Those Italians really knew what they were doing huh? I can't eat pizza a lot though, so when we have

pizza I want it to be good. Ben and I differ about our pizza likes and dislikes. He likes thin crust, I really dislike thin crust. The thicker the crust the better, I say. I don't go for cheese in the crust either, it just doesn't seem right. The first time we ordered pizza after we got married scarred me for life. I can't even remember the name of the place. It was very close to our apt. building and it later went out of business. I let Ben order since we were still in honeymoon bliss and he ordered something thin crust with jalapenos on it. I can't even remember the other toppings because of those disgusting jalapenos. I could not even pick them off because they were put on under the cheese. Well needless to say, I do the pizza ordering now. I'm a pretty traditional pizza person. I like a gourmet fancy pizza at times too, but give me pepperoni and black olives and I'm happy. My friends have expressed their feelings of my choice of the best pizza, but I don't care. I love Round Table Pizza!

Maybe it's just nostalgia, maybe it's the sauce. I don't know what it is, but I do know I think it's the BEST! The last time I had it was four years ago. I was pregnant with Levi and visiting my mom in Santa Rosa. Ohhh..I got terrible heart burn, but it was sooooo worth it. So why doesn't Round Table have restaurants anywhere but the West Coast, Asia, and Middle East. That seems strange doesn't it? Do they ship? Can someone overnight me a lovely pepperoni and black olive pizza? Now you are asking yourself why, why would someone choose Round Table Pizza when their are so many other places to choose from. Let's go back to my first experience with pizza. My parents were health food freaks. We ate things then, that I would never be able to choke down now. We used to go out for pizza, yeah it seems like a nice thing to do huh? Well my parents brought their own pizza toppings with them in little baggies. Pineapple, sunflower seeds, garden tomatoes and mushrooms, who knows what else flax seed and wheat germ probably. How embarrassing, and Yuck for kids. Later on, once I reached my high school years we started getting pizza from Round Table. This must be where the nostalgic feeling comes from. I moved away and stayed loyal to Round Table. I ordered their sandwiches too. They are also yummy good. I've tried gourmet, square pizzas, wood fired, calzones, homemade, take-n-bake, frozen, Chicago style, etc...and they are all fine and good but will never take the place of a pepperoni and black olive from Round Table Pizza.

Whatsoever State I'm In

2008-07-11T12:37:00.002-04:00

We have had the opportunity to live in 4 different states in the last 6 years. Seems like a lot huh? Yeah, I think so too. People are always asking me which state I liked the best. Well that's easy but, I'm not going to tell you just yet. There are positives and negatives to every place. Lets start with my native California. California is a wonderful state, topographically speaking. You can enjoy sun and sand, mountains and snow, desert heat, coastal fog, hot beaches, cold beaches, it has everything. California also has most of my family and a lot of my friends. Lets see..the downside of living in California would be the cost, the earthquakes, traffic, and the liberal craziness. Next is Louisiana. La is rich in history. I love the Antebellum homes and battle sites. The people are warm and welcoming. You've heard of southern hospitality? It's absolutely true. It is always green there and the beaches were very close. And of course the cuisine. Who can go to La and not have cafe au lait and beignets. If you are into fried food, then look no further. I also love the conservative nature of the South. I worked in the public schools there, and always heard teachers talking about GOD in school, especially after the hurricanes. Ben would say LSU football and chicken and sausage gumbo are greatly missed. We miss all our friends there as well. The downside of La would be the weather (hotter than..and humid), the uhhh..HURRICANES!!, mosquitoes and fire ants, and alligators (though tasty..they are menacing up close). Now onto Kansas. Kansas is also very historically significant. The Laura Ingalls Wilder museum, several battlefields and museums, and Dodge City (Gunsmoke). We lived in Overland Park which is just outside Kansas City. I loved how it was spread out. All the shopping and everything was close by. It was a very family friendly place and Ben worked at the Sprint campus just 5 minutes from the house. We had the most wonderful neighbors too, always looking out for each other. I miss all our friends in KS and Missouri too. The downside? Tornadoes (never saw one), arctic temperatures in the winter, flat land as far as the eye can see. Last, but not least Virginia. Talk about history. I can hardly wait to go to Mt. Vernon. D.C. is about 20 miles from us and full of things to see and do. The beaches are nice and close by. There really is a lot to do in and around Ashburn. Ben would say, Rugby and Cricket with the other Sri Lankans. But, I find myself singing this Veggie Tales song a lot. "I'm busy, busy, dreadfully busy, I'm much too busy for you". Do you see where I'm going with this? This is an extremely fast paced place. I can almost catch a glimpse of my neighbors as they speed into their garages and close the door. Haahahaa. It's not particularly family friendly here, but we keep our family friendly to everyone and we have made many wonderful friends here as well. To sum it all up we have learned and experienced so much in every state we have lived in. The culture has been drastically different in every state and we have grown because of our experiences. Not to mention the AWESOME churches and relationships formed. We have learned that in whatsoever state we are in, to be content. My favorite state? The state of contentment.

Long Time, No Post

2008-07-08T10:45:00.007-04:00

I was playing with the idea of deleting this and saying forget it, but I decided to just let it go. I just want to keep my family and friends up to date on the Fernando family happenings. Levi turned 4 years old..Yikes. Luke is now 5 months old. We have been enjoying the summer, except for the heat and humidity. We spent Levi's birthday at Solomons Island and truly enjoyed the sun and sand. I was not ready to do a big birthday party this year. I am too tired.

Levi graduated from his 3 year old Preschool class and will be starting his 4 year old Pre-K class in September. He goes to Open Arms Preschool and seems to really like it. He better like it...his daddy waited hours in the cold to get him in. I can't believe the competitiveness of some parents. Ben said there was parents outside at 3 in the morning to get in line. WHAT?!?! I mean c'mon, I just need Levi out of the house for a few days a week.

More on Levi..I know, I know but, Luke is not doing much to write about right now. He started eating some solids..mostly spitting it out but, we are working on it. He is a really good baby. He's an easy baby...compared to my first. Back to my first. Levi was so proud to get a medal at the end of soccer. Of course everyone got one (because they were just 3 years old) but he didn't know that. He thinks he's a sports star..hehee so precious.

Now for Luke. To update you all on his visit to the surgeon, he needs to go back when he turns a year old. The doctor said there is nothing to worry about right now. As long as it does not get infected or anything, there should be no problems. We thank God for that. It is so stressful when something is wrong with one of your babies. Luke is just a wonderful little chunky boy. I could just kiss his chubby cheeks all day.

As for me and Ben, we stay pretty busy. We love our church and try to stay involved. I'm part of the hospitality team for MOPS at our church, and really love it. This summer has kept us busy with play dates and birthday parties. I turned 34..YOWSA!! Ben is about to turn 34 and we will celebrate our 6 year anniversary at the end of the month. That's about it. That should bring you up to speed. Moving around a lot leaves a trail of friends. We have left a trail from the west coast to the east coast and I miss everyone! I wish I could see everyone again. I've missed weddings, birthdays, and births of babies, but I think about you all. Everyone has made an impact on my life in some way. I love and miss all my family and friends!!

2008-03-22T15:49:00.000-04:00

Levi and his little brother. Juggling both boys is a task, but Levi is a helpful big brother.

Diapers, Diapers, Diapers

2008-02-26T23:07:00.000-05:00

Who knew that the quality of a diaper was such a huge deal. I sent my wonderful husband out for diapers and bless his heart he came home with the cheapest diapers that were on sale. The outside of them felt like the brown paper towels you find in public restrooms and they were extremely ill fitting. I might as well have been using a newspaper. Ben, being the wonderfully patient man that he is, bought me some Huggies. I have always used Huggies and found them to be the best fit with no leaks. We go through diapers like crazy. On a more serious note, Luke goes to the neurosurgeon tomorrow. We will take him to the Children's National Hospital tomorrow afternoon. I was a nervous wreck. We took Luke up to be prayed for at church last Sunday and I truly feel at peace about his appointment. He is going to be just fine. We stand on the promises of God, knowing he is in control.

A Beautiful Baby Boy

2008-02-25T14:33:00.000-05:00

So this is my first posting and this page is still under construction. My hope is that I can keep in touch better with friends and family. On January 30th Luke was born. He graced us with his presence at 2:15 am. I should have known then that he would have me up at all hours of the night and morning. Sleep is so scarce, I would pay money for it. I used to do laundry once a week, now I run a laundromat. Showers....well lets just say I sport the scent of BO and breast milk. Ahhh..the lovely first days of motherhood. Now, couple all this with an energetic 3 1/2 year old and what you have is a serious Calgon crisis. However, I am totally in love with my boys. Ben and I are in full survival mode. One day at a time sweet Jesus. Now I must go answer the call of the wild.