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.

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.

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.


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 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 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.