April 4, 2013 (Day +127)
Praise God, Jeremy continues to be active and playful.
It’s been a busy few weeks since the last update, so there hasn’t been much time to sit down and write.
The decitabine and vorinostat has been going well. The new protocol allows Jeremy to be home during treatment, so we have been in and out of clinic appointments all week. The nurses in clinic love him and one patient care assistant affectionately calls him her boyfriend (Jeremy does not object). The care team here is one of a kind. We don’t know if the new medications have been effective in treating the disease, but Jeremy has been tolerating it really well with little to no side effects. We will be able to better determine the efficacy of these medications when Jeremy gets a bone marrow aspirate at the end of this treatment cycle.
We’ve been in touch with the Make-A-Wish foundation and they’ve come through on Jeremy’s wish! We haven’t told him about it yet because of the dynamics of our situation. The last time we had to break a promise to him was awful and we don’t want to do that to him again. The doctors have cleared him for travel and will “stock him up” with any necessary transfusions or prophylactic medications before we go. We are praying that God will protect Jeremy from any infections or complications during his trip that may require a hospital visit. Praise God that He has provided for the desires of Jeremy’s heart.
We have also started discussions with another cancer research hospital to see if Jeremy might be eligible for any open clinical trials that may be able to help him. The Lord has given us the responsibility as Jeremy’s parents to care for him the best we can. We continue to pray for Jeremy’s healing and for the Lord to light our path.
It’s been a blessing to be at home. Jeremy continues to run around and play. Just by looking at him, it’s hard to believe that his body is burdened by this terrible disease. Really, praise God for how He continues to sustain and strengthen Jeremy through these days.
Jeremy brings much laughter and joy to all of us – Alice, myself, Matty, and anyone who interacts with him. He is one of the sweetest kids around. The other day, we went to Target (one of his “one day” places). Alice bundled him up and carried him out of the car. It was a little bit windy walking from the car to the entrance, so Jeremy turned toward Alice, worked through the restriction in his arms because of the bundling, wrapped his hands tightly around Alice’s neck and whispered to her, “I protect you, Mommy.” To demonstrate his impartiality, he did the same for me when we were walking out of one his many clinic appointments.
Jeremy and Matty continue to form their brotherly bond. Jeremy loves his little brother, speaking very gently to him at all times, almost like a whisper, softly touching his cheeks and hands. And it does go both ways. Matty stares at his big brother in awe (as he does with most things – it’s as if everything he sees astonishes him somehow), always interested in what Jeremy is doing. I may be seeing things, but Matty seems to want to caress his big brother, versus what he would do to me – stick his fingers in my mouth and violently pull away as his fingernails scrape the inside of my lip (still love him, though). When Matty sees Jeremy, he will always smile and try to initiate conversation by making those adorable baby noises.
Here is a bunch of media that was taken over the last few weeks, in ascending order. A brief description precedes each photo.
This is Jeremy scoping out the toy section at Target.
Matty had his first visit to the Aquarium during one of Jeremy’s clinic visits.
Jeremy feeds Matty during Matty’s first semi-solid food introduction.
Jeremy displaying an egg we helped decorate for Easter for one of his buddies.
Jeremy painting more eggs for Easter. His tongue sticks out a little bit when he’s focused or concentrating on something.
All the eggs colored and decorated by Jeremy (with some assistance from us). The olive colored eggs are the ones he dipped with his own food coloring concoction (he put a spoon of each color of the coloring dye and mixed them together in a bowl).
Jeremy on the ride home from a clinic appointment while Alice tells him a story.
Jeremy enjoying a movie.
It may be a while before we get to update again. There is a lot to do to prepare for our upcoming travels. Please continue to pray with us. It is truly only by the Lord’s hand that Jeremy would be well.
- for His goodness and faithfulness
- for His protection and mercy over Jeremy
- Jeremy is eating well and fever free
- Jeremy continues to be active and playful
- the new chemo treatment hasn’t caused any adverse side effects
- the Make A Wish foundation delivered on Jeremy’s wish
- 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