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.

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.

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.

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!

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.

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.

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.

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.

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.