Praise God for our days at home.

Space at the hospital is tight, so we weren’t admitted into the hospital last night.  We did have to go to clinic at 11:30am to get labs drawn to see if Jeremy would need a platelet transfusion.  Thankfully, his platelets were holding (and even increased slightly – from 18 to 23), so Jeremy was able to avoid a transfusion.

The doctors came in to speak with us at around 4pm.  Both seemed emotional and one had clearly been crying.  We were told that the aspirate showed 18% blasts in Jeremy’s new bone marrow.  We were also told that to relapse this quickly post transplant is “not good.”  The options are limited, prognosis is poor, and outlook is bleak.  To get him back into remission will be “very hard.”  Our doctors mentioned that at this stage, some families decide that their child has had enough and they stop treatment.  Without treatment, the doctors estimated that Jeremy would have a few weeks to a few months left.

The other option is to proceed with further treatment.  The treatment would be different from previous treatment, since the previous treatment wasn’t as effective as they would have liked, with the end goal being a 2nd bone marrow transplant.  The medications they want to try would typically be used for adults with myeloid malignancies.  It’s shown some efficacy in adult patients who relapse after transplant.  There’s no guarantee that it would work for Jeremy, but it may reduce the percentage of blasts in the marrow or keep it where it is.  There’s also the small possibility that it would do nothing and the percentage of blasts would increase.  The medications have less toxicity than the previous chemotherapies used, but the potential side effects are still the same – mucousitis, risk of infection, stomach upset, etc.  The rounds of treatment would look similar to previous rounds, administering the medication over x number of days, waiting for counts to drop, then come back again.

So we were given two options, essentially.  Stop treatment and wait for the leukemia to overtake Jeremy’s body, or try this different treatment, with all it’s side effects, and hope that the leukemia will respond to it.

Our doctors recommended that we do not stop treatment.  “A few more cards to play” were the exact words, I think.  It’s in our hands and the doctors are supportive of any decision that we make.  A very difficult decision, to say the least.

On one hand, Jeremy’s body has been through so much already, we’re not even sure what more treatment would do to him.  He’s already in a weakened state having come through bone marrow transplant.  His liver numbers are mildly elevated (50’s being normal, Jeremy was in the 150’s, doctors tell us they’ve seen this number in the 1,000’s in other patients) and his new immune system isn’t even fully functioning yet.  Should we just stop treatment and try to make Jeremy’s last days as full and as enjoyable as possible?

On the other hand, there’s the small possibility that this further treatment can induce remission, or at the very least, buy him more time.  But then there’s also the possibility that it will do nothing and the time he spends in the hospital trying this medication and enduring it’s side effects is time that he can be doing as much as his beautiful little heart desires before he is no longer able to.

In the end, we decided that if there’s something that we can do to help Jeremy live his life to the fullest, we should.  So we opted to try further treatment.  We’re supposed to be admitted back to the hospital on Sunday night, but since space is still tight, it may not happen until Monday.

Yesterday was one of the hardest days we’ve had in a long time.  I had intended to write this update last night, but with all the news that we heard, the options available to us, we were just completely exhausted from crying and passed out when we were cuddling with the kids.  In fact, we had to take several breaks from writing this because it’s so difficult to remind ourselves exactly what is happening right now.  To have to write things like “last days” or “few weeks to a few months left” is heartbreaking, especially in the context of our precious son.  Our hearts are incredibly heavy right now.

In all this, God is good.  Doctors are still amazed at how well he is doing now, even after all the treatment he’s gone through.  “A tough kid” were the doctor’s exact words.  A prayer-covered kid is more what we’re thinking.  God has strengthened and sustained Jeremy through every round of treatment, including the bone marrow transplant.  And we have complete faith in the miraculous, healing power of God.  Absolutely, we believe that God can heal Jeremy from this terrible disease.  Yet, we do not know His will for Jeremy’s life.  To know what God will do is to be God, and we are certainly not God.  We do have peace with knowing that God’s plans for Jeremy may not be our plans for Jeremy and we know that God’s plan for Jeremy is greater than anything we could ever plan for him.  We are assured of Jeremy’s salvation in Jesus Christ.  He has always been open to learning about God, Jesus, and the Holy Spirit.  He is fully aware of our “yucky” hearts and how only Jesus can give us a clean heart, so that we can be with God one day.  A week ago, we asked Jeremy if he wanted to believe in Jesus.  He responded with a sincere “yes” and we prayed to invite Jesus into his heart.  Praise God!

The last few nights, Jeremy’s been asking, “can we sleep with every of us?”  I’m pretty sure he means “all of us” or “every one of us”.  It’s been easy to oblige.  Jeremy is still very active, eating well, and being his sweet self.  He’s seen us at our worst, and after asking us why we’re sad, will almost always get us a tissue or tell us, “it’s ok,” as he wraps his little arm around our necks.  We love our Jeremy and we are praying fervently that God will free him from this disease.

Thank you all for continuing to be beside us.  Thank you for reading these long updates and praying through the prayer requests.  Thank you for the words of encouragement and acts of kindness.  Our apologies for not being able to respond to every comment, text, email, and phone call, but please know that we do read every word and listen to every message.  We do feel the love.

Please continue to pray with us.

Praise God:

• He is good
• for His son, Jesus Christ, in whom we have eternal hope and salvation
• Jeremy invited Jesus into his heart
• Jeremy is still active and playful
• there are still options to save Jeremy’s life

Please pray:

• 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 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