Maintenance Begins

We finally made it to the day all the doctors have been telling us about. The last 6 months of the aggressive chemo has been really hard and we have been waiting for this light at the end of the tunnel with maintenance. Thanksgiving started with Luke getting a blood transfusion and platelets because his counts were really low. We had a quiet Thanksgiving with the three of us and of course turkey and the fixings.

On December 8th Luke's counts recovered and was able to start the next round of chemo. He had a spinal tap of methotrexate and IV vincristine. He did well other than the fact he still struggles with access and deaccess of his port. Now that this phase begins we will only have to go to the hospital every 2 weeks. One week he will have a fingerstick for his blood counts and the other week he will have chemo. Also maintenance also means more drugs at home vs drugs at the clinic. He has oral mercaptopurine daily, dexamethasone daily for five days each month, methotrexate orally once a week, and of course bactrim. The regimen dictates our lifestyle, when Luke eats, sleeps, and goes out. At the clinic, he got a visit from Santa.

On December 22nd Luke had an appointment for counts and his counts were all normal. His ANC was 1550 which was an okay to go to church on Christmas. We enjoyed the holidays with some close friends and family. Luke got many gifts from Santa and may need another room just for his toys.

On January 5th, he had his first chemo of 2011. He had made counts and was given IV vincristine. The doctor says that we should be able to start having a somewhat normal life....going back to school, activities, playdates, etc.

Thank you for everyones love, support, and prayers through the last 6 months. Please continue to keep us in your prayers and that the rest of therapy goes uneventful.

What does Luke like?

We have been asked by many folks....what does Luke like? Sometimes, it's because they may want to give him something. Sometimes, it's because they want to pray that he continues to enjoy those things, and to be encouraged by those things.

Since he has been house-bound for so long, we have had to find clever ways to keep him entertained and engaged mentally and physically. Here are some of the things Luke has found himself "liking".

1 - Playing football (with Daddy): wow, he plays dirty; first, he tackles me, then he kicks me in the gut; he doesn't know it yet, but we got him an eagles uniform to play in (even has a soft helmet)
2 - animated movies (like Toy story, incredibles)
3 - trains, trains, trains
4 - CARS, CARS, CARS
5 - my baby can read dvd
6 - books
7 - arts and crafts
8 - oh boy...here's one...play kitchen stuff...he saw daddy slaving away in the kitchen and thought it looked fun...we got him a play kitchen and he makes us laugh so much as he whips around it frying up things, microwaving things, etc...imaginary heat, of course :)
9 - praying, singing, reading the Bible
10 - running around outside (it is ok for him to be outside of the house)
11 - helping daddy with the laundry (don't laugh, he really helps!) :)
12 - dinosaurs and dragons
13- bath tub play
14 - eating edamame (he finds them tasty and fun)
15 - carrot cake
16 - green berry burst hawaiian punch
17 - broccoli and cheese
18 - chasing and bursting bubbles...picture him chasing down bubbles, giggling hysterically, and popping them
19 - playing car race with anyone he can find, including uncles, aunties, and grandparents
20 - thank God for nick jr. (he loves pretty much all nick jr.); while his counts were good, we took him to see "storytime" featuring several nick jr characters...he was in shock (so excited...he was mesmerized)

Well, that some of the things Luke continues to enjoy. We are thankful that these things have and continue to fill his heart with joy.

Continuing to get comfortable?

Today, Tuesday, December 7th, 2010, marks the 6th month since we found out that Luke had leukemia. Wow. Time has flown by. We are so thankful that our life has been filled with love, peace, comfort, and strength. Thanks to God, and thanks to all of our loving family and friends. Also, thanks to those we have met in passing, online and in person, who may have encouraged us and prayed for us.

It has been a trying time, but we have had far more good days than bad days. We still have our eyes and hearts open to where God is leading us.

Nearly everything we thought about or planned prior to June 7th,. 2010 has changed. God-willing, we will gain clarity and re-gain vision towards the future. In many ways, we have jumped forward, and in some ways, he have stumbled, and in other ways, we have not moved. Your continued prayers are needed and greatly appreciated. 6-months of treatment have been completed, and God-willing, Luke has 33 more months to go.

Luke has always been our special and precious little boy. In these last few months, we have seen our baby take on the role of an older, more mature child. That is eye-opening, since he's only 3. Many times, he has helped us, when we needed. He has even told us to "take a deep breath" or "let us pray" or "turn off the tv, it is nap time". We love him so much. Our hearts break, knowing he must endure all of this, but we are comforted with his resilience and his spirit.

Pictures from the clinic...
Here's Luke playing with a netbook. Wow. Doesn't he look grown up?

Here's Luke making some puppets with some University of Houston Volleyball Players. Hmmm...he seems to enjoy warming up to ladies. Nice!

Here's Luke in the infusion center playroom. Daddy explained to Luke what the Puppet Theater was for, and Luke proceeded to conduct a puppet show. Daddy was the only one in the audience, but it was special.

Transfusion - November 22, 2010

We never truly understood how important giving blood can be. We will definitely start giving blood. During Luke's 'delayed intensification' phase, his blood counts went down to a critical level, and he needed a transfusion of blood and platelets. Thanks to the donations of others, Luke received the needed blood, and his counts improved greatly. Though his immune system is still down, and he has had to stay at home for about a month now, he is in good spirits, by God's grace.

Here's is Luke, all smiles, as we went to the clinic for his first transfusion since being admitted to the hospital during his initial diagnosis (in June).


Here is Luke looking up at the blood infusing into the port. Who knows what he is thinking? On this day, he received blood. A few days later, he received platelets. He developed an allergic reaction to the platelets, and the nurses gave him benadryl iv and hydrocortisone iv. Thankfully, it was not a serious reaction (a few little bumps on his head/face), but this does mean that any time he will need similar transfusions, he will be pre-medicated with these medicines.

Updates on Luke's Treatment

The last few weeks have been really busy going in and out of the hospital daily. On November 3rd, Luke was scheduled to start the second half of delayed intensification, but his counts were too low to start. His ANC had dropped to 280. They needed a minimum of 750 to start. So they postponed it for one week. On November 10th his counts were good but he had some wheezing because of a cold virus so they cancelled his spinal tap of IT methotrexate for one week. He still had gotten IV cytarabine which he will get daily for the next 3 days. Our insurance did not approve the home nurse so we had to go back to the hospital on Thursday and Friday. He also started a new drug Thioguanine that he has to take orally for 14 days. Surprising Luke has been taking this crushed tablet with Hawaiian Punch and has had no issues taking it. Luke finally got his spinal tap on November 16th with methotrexate and also got the IV cytarabine. This week we have also been back to the hospital everyday to get his treatment. He is still accessed so that makes things a little easier. His counts have been declining slowly. If his counts for his hemoglobin go below 8.5 he will get a blood transfusion on Monday. Hopefully his counts will recover in the next few weeks.
It has been nice having the parents around for the last month to help during this tough time. It was always nice having someone help with making meals and especially keeping Luke entertained while he was stuck in the house. Luke has so much energy that the parents were wiped out. They leave on Saturday and I think Luke will be upset when the house will be quiet again.

Salt and Light

In Matthew 5: 13-16, Jesus teaches about salt and light. "You are the salt of the earth" and "You are the light of the earth". Many people allow others to see what "Christ is like" by adding flavor to life (especially the lives of others) and serving as beacons in this world.

Luke recently crossed his 5th month of chemotherapy. Through all of this, we are thankful for what God continues to do for us. We continue to look forward to what God has in store for us.

As we reflect on our journey thus far, we see His Grace abound. We especially find strength and comfort and joy in many, many acts of love and kindness received.

We appreciate and are thankful for the prayers of others. It means a lot. Family, friends, and others lending words, acts, and other means of support make this journey far more tolerable.

We recently enjoyed being treated to a comedy show, that was a blessing. Also, some loved ones took a special opportunity on their birthday to coordinate a group blessing of gifts for our family Family and friends make food for us. Our family and friends, when feasible, visit with us. Our family and friends check-in via phone, text, email, blog, and facebook. Luke gets toys and games and arts & crafts stuff and clothes. Folks have offered to take pictures of him. His old montessori school offered the opportunity for free playtime with his friends. His old teachers offered to teach him at home. The hospital he goes to provides loving care. Also, at the hospital, he gets fun stuff, blankets, puppet shows, playtime, and food. In addition to hospital care, we receive opportunities to enjoy events and outings free of charge. Many, many blessings.

This journey has been difficult, but God has been extremely faithful. We never knew how many different acts of God's love we would or could receive. We are so thankful for the blessing others have been to us. Anyone reading this blog post...we thank you. You have blessed us.

Hard to keep up with Luke

Luke was a little excited after getting a "How to train your dragon" dragon from cousins Owen and Olive. We love to see how God's blessings abound. Also, it is so heartwarming to see how acts of kindness have such profound effects on our Luke (and us).

We are so happy he has such energy and joy!