April 15, 2013 (Day +138)
Praise God for a quiet, fever free week.
I left details out of the previous post, but this past week was Jeremy’s Make-A-Wish trip to Disneyland! The Make-A-Wish foundation went all out, covering all travel expenses. A big thank you to them and Disneyland for making these trips for kids like Jeremy extra special.
The timing of the trip was good, but not great. The decitabine and vorinostat are slower acting medications and Jeremy’s counts received the brunt of its effects a few days before we were about to leave. His hemoglobin levels were actually good and he didn’t need any blood transfusion, but his platelets and ANC were low. He received a sizable platelet transfusion, but the low ANC we needed to compensate with GCSF injections during our trip. So, for 3 out of the 5 mornings we were there, before heading out to the parks, we had to poke him with a needle. It was less than ideal, but necessary. Jeremy was a champ through it all.
Praise God that Jeremy did not encounter any infections or fevers or bruising or any complications during his trip! Jeremy went from being completely isolated to being completely immersed in a crowd full of potentially sick people and germ-carrying kids and experienced no sickness himself. God continues to make His loving presence known despite trying and difficult circumstances. He is entirely good, there is no doubt about that. Praise God for His daily, undeserved mercies.
It was the road trip I always imagined with two young children – lots of crying and frequent road-side stops to use the potty. The crying was actually more Matty (understandably) than Jeremy. In fact, Jeremy was extraordinarily patient throughout the majority of the trip. There were many times when he would have to sit and wait in his stroller while Alice or I got situated and organized before we could start making our way toward the parks.
Jeremy loved both Disneyland and California. On our first day in, after hitting a few attractions, Jeremy told us, “I love Disneyland! I’m having so much fun!” Not surprisingly, some of his favorite rides involved Nemo, Toy Story, and Monsters Inc. After the rides, he would tell us all about the things that he saw or what he did. After the Buzz Astro Blasters ride, he’d tell us, “I biew biew all the Zurgs!” He also really enjoyed the parades and Fantasmic, although you couldn’t really tell at first because he was completely straight-faced through it all. When it was over, he’d have a big smile on his face and say, “I liked it!” He exhibited some typical toddler reactions to a lot of things – initially very apprehensive, but after trying it, really enjoying it. He’d recount to us, “At first I was scared, but then I tried it, and now I like it!”
Our families joined us about midway through the trip and Jeremy was really happy to see them. His face lit up when he saw so many people in person that he only got to see via video chat for the last couple of months.
Overall, it was a great trip. When we were done with the daily medications, central line care, and GCSF injections in the mornings, our days at the park almost felt normal. Strolling Jeremy around, strapping Matty in the baby carrier, eating outside food, chatting with other parents, hanging out with family – we almost had some semblance of normal life again. Sadly, it’s just that – a semblance and not reality. After our tearful goodbyes with family as they headed back to their hotel and we to ours, Jeremy turned to us as we were walking and said, “I get a poke, then we come back, ok?”
In a few days, we will be traveling to a cancer research hospital to explore other options for treatment. When we arrive at the new hospital, Jeremy will have a bone marrow aspirate (in all likelihood it will be a bone marrow biopsy) done to determine the disease status in the marrow. From there, treatment options may be different depending on the results. We are praying for favorable results from these procedures.
In all honesty, we are completely terrified of what lies ahead for our precious Jeremy. There is so much that is unknown and we are often left with a feeling of dread as each as each day draws to a close. Yet through it all, God continues to pour out His loving mercy, which we have seen and experienced. And we cannot discount the comfort that we have through our high priest in Jesus Christ. God is sovereign in all situations and we rest in His promises of ultimate and final rescue.
“For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation will be able to separate us from the love of God that is in Christ Jesus our Lord.” (Romans 8: 38-39)
Thank you all for your continued prayers and support.
- for His goodness and faithfulness
- for His sovereignty
- for His protection and mercy over Jeremy
- Jeremy is eating well and fever free
- Jeremy continues to be active and playful
- Jeremy did not encounter any infections or require any hospital visits during his trip to Disneyland
- that God would receive all the honor, glory, and praise for this trial
- that we would fix our eyes on Him
- for spiritual protection from the enemy’s lies
- that our families would have the Lord’s peace and comfort as we all wrestle with the recent news of Jeremy’s current situation
- that God would miraculously heal Jeremy from this aggressive disease
- that God would give us wisdom in making the best decisions for Jeremy’s care and treatment
- that the new treatment would be effective in treating the relapsed leukemia
- that God would strengthen and protect every inch of Jeremy’s body – his brain, heart, lungs, liver, kidneys, pancreas – from the side effects of the new treatment
- that God would protect Jeremy from any dangerous or fatal infections during his treatment
- that God would protect Jeremy from mucousitis, stomach issues, or any other painful side effects from the chemotherapy
- that Jeremy would be able to eat and play through the upcoming chemotherapy
- that God would give the doctors wisdom in treating Jeremy and recommending next steps
- for our protection (Alice, Matty, and myself), that we would not be exposed to any of the medications being used in this next treatment phase
- for travel mercies, that Jeremy would not encounter any fever or infections – bacterial, viral, fungal, yeast, or otherwise during his trip, that his cell counts (white blood cell, hemoglobin, platelet, and ANC) would be stable and he would not require any transfusions
- for the upcoming bone marrow aspirate/biopsy, that the procedure would be performed without any issues and that we would see favorable results
Here are a few pictures from our trip, in no particular order.