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!!

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.

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!

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.

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.

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.

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.