Wednesday, September 9, 2009

End of Summer Update



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!!

Wednesday, August 5, 2009

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

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.

Wednesday, June 24, 2009

Lukey says Farewell to his favorite Dr.


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!

Wednesday, June 17, 2009

Introducing Joshua Liam and Jacob Lael

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.

Thursday, May 28, 2009

Our Updates

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.

Monday, May 4, 2009

A New Season

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.

Friday, April 17, 2009

Spring Has Sprung

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.

Friday, March 27, 2009

Results

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!!!

Thursday, March 19, 2009

Updates and Follow-ups

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!

Thursday, March 5, 2009

Chemo is OVER!!!!

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.

Thursday, February 26, 2009

Chemo milestone!! And Hospital Stay

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!

Saturday, February 21, 2009

The Home Stretch

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!

Tuesday, February 17, 2009

Update on Chemo 6th Round

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

Wednesday, February 11, 2009

Lukey's 1st year!!

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.
video

Saturday, February 7, 2009

God's sense of humor

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.

Friday, February 6, 2009

Emergency Visit

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

Monday, February 2, 2009

Cancer Fears ME

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.

Friday, January 30, 2009

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


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.

Monday, January 26, 2009

Post Transplant Chemotherapy

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.

Wednesday, January 21, 2009

Mid-Week Update

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.

Monday, January 19, 2009

Hospital update

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!

Saturday, January 17, 2009

Rejection or Chemo?

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.

Friday, January 16, 2009

Prayers still at work

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.

Wednesday, January 14, 2009

Prayers at work

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.

Tuesday, January 13, 2009

Update on ER visit - rejection or chemo?

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

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.

Thursday, January 8, 2009

Happy New Year!

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.