Praise God, the last two weeks or so have been pretty quiet.  Jeremy continues to be fever free and eating well, running around the house, playing, and learning.  It’s amazing to see so clearly how our heavenly father continues to pour out His mercy and provision.

Praise God, Jeremy’s lab results from the last two weeks were negative for CMV.  Jeremy will be able to stop the IV ganciclovir and switch to an oral medication to keep the CMV (and other viruses) at bay. This is great news because the ganciclovir supressed his counts and was the reason for the gcsf shots. Without it, we’re praying that we’re at the end of the gcsf injections. Jeremy’s medical team also stopped the overnight hydration (needed for stress on the kidneys because of the ganciclovir) two weeks ago.  His kidney numbers have been pretty stable for a while and we’ve been trying to keep him as hydrated as possible.  But we did see a slight bump in his kidney numbers with last weeks’s labs.  Unrelated to the overnight hydration, but related to the last week’s labs – we also saw his liver numbers creep up, possibly a result of the fluconazole, an anti-fungal med.  This week, praise God, they dropped back down slightly. It really is a very delicate balance with all these medications.  He needs them for protection, but they can also be taxing on his liver and kidneys.  We are praying that both his liver and kidneys will be spared of any further stress.

Tomorrow, the cyclosporine taper will be at the point where Jeremy will only need it twice a day, which means we will no longer need to wake him up in the middle of the night for his midnight dose. Hopefully, he’ll finally get a night of uninterrupted rest for the first time in 6 months.

We’ve also been discharged from homecare. It’s pretty nice actually, not having to work around a twice weekly visit. But, it does mean that we are now responsible for lab draws, which can be challenging sometimes, especially when blood doesn’t flow and we have to try to troubleshoot.  We’re not trained professionally for this, so we pray often that the blood draws would be smooth and complication free.

We’re still seeing some small spots on his arms, similar to goose bumps. He’s had these same spots on his back and around his eyes, but they’ve faded away since discharge. They don’t seem to be bothering him and haven’t gotten worse, so for now we’re just keeping an eye on it, as instructed by the medical staff.

We had an appointment at clinic two weeks ago for Jeremy’s bi-weekly dose of pentamidine.  When we made our way into the treatment room, we ran into one of Jeremy’s doctors and he gave me a light punch on the arm, saying, “Hey! 100% donor, huh? That’s great!”  He told me that being 100% reduces the risk of relapse, but increases the risk of gvhd.  Still, he said, “we’d rather deal with gvhd than relapse.”  Praise God, Jeremy is 100% donor.

Hearing the word “relapse” really reminded me of where we are with all of this.  With the bone marrow transplant, Jeremy became a transplant patient in addition to a cancer patient (wow, I really hate that word). The transplant and its potential after effects are one thing, but ultimately our heart’s desire is for Jeremy to be cured of this awful disease. There are those rare days when it feels like the worse of it is over.  Then there are the more common days, like that day in clinic, when we are starkly reminded that there are still potential challenges ahead and much of it is out of our hands. Praise God, those are also the days when we are reminded of God’s very felt, very known presence throughout all of this and how His hands have carried Jeremy through every round of chemo and these early stages of recovery.

Way, way back, early during Jeremy’s third round of treatment, we were told that a potential 9/10 match had been found.  In the conversation we had regarding what a 9/10 match meant, one of the doctors we spoke to told us that with a 9/10 match, there’s a good chance that Jeremy would be cured.  Turns out, that match ended up being less than 9/10, so it fell through.  After weeks of waiting for a match and Jeremy enduring the side effects of chemo, we were finally told, on October 16th, that a match had not been found, Matty’s cord blood was also not a match, and doctors would be moving forward with a riskier haplo transplant.  Our “break of day” had come (Psalm 46).  Completely broken and weeping, we prayed, continuing to leave Jeremy’s outcome to our heavenly father.  Later that day, a doctor came in and told us a 9/10 match had been found.  A 9/10, which carries a better chance at a cure and a better graft vs. leukemia effect.

During the BMT round, when we were told that Jeremy’s CMV had reactivated, we were also told that there’s very preliminary evidence from a study in Europe that CMV reactivated BMT patients have less occurrence of relapse.  At the time, I thought the doctor was trying to give us a silver lining, but in retrospect, maybe it was more.

And now, Jeremy being 100% donor is another factor contributing to a reduced risk of relapse.  I often wonder what all of this means. On one hand, we don’t want to place our hope in what studies and statistics tell us.  But on the other hand, we want to acknowledge and praise God for how He has provided and responded and heard our cries (and yours) for mercy.

And aren’t we to praise God, leaping and dancing, anyhow? For King David, God’s presence was enough to make him “dance before the Lord with all his might.”  Should we not respond in the same manner? God is the amazing constant through all the ups and downs of Jeremy’s journey and in everything the Holy Spirit has reminded us of His promises made available through Jesus Christ and our duties as His followers.  We don’t know Jeremy’s future, but we do know this: God is good.

It’s been a long time since the last update, but every time we’re about to post something comes up, or we’re so tired that it’s just easier to sit and rest. Please know that your prayers are very appreciated and we’ve certainly experienced God’s response to them.  Thank you all for continuing to journey beside us.

And to give an idea of how Jeremy is enjoying home (the clip is short, but he did this for about 5 minutes):

Praise God:

• He is good
• Jeremy continues to eat well
• Jeremy remains fever free
• Jeremy’s CMV levels continue to be negative
• Jeremy is slowly coming off his medications
• we have been able to enjoy our children at home
• Alice and I continue to be in good health

Please pray:

• that God would continue to use this situation for His glory
• that we would be obedient to God’s plans for this situation
• that we would continue to cast our worries and fears on the Lord, that we would fix our eyes on Him
• that we would continue to be reminded of God’s greatness and provision, that we would wait on Him, and that we would not allow fear to creep in
• that we would rejoice in the moments that God gives us
• that God would provide full and complete healing and total health for Jeremy, that the bone marrow transplant would be Jeremy’s final cure
• that Jeremy would not develop any late effects from the chemotherapy and drugs used to treat him, especially any second cancers
• that Jeremy would not have any brain, liver, lung, kidney, pancreatic, heart, or any other type of organ damage as a result of the chemo and antibiotics
• that Jeremy would not experience any spontaneous bleeding from his nose, central line, or anywhere else on his body
• that the CMV would not reactivate
• that Jeremy would not encounter infections for fevers while he is home
• that Jeremy’s counts would continue trending up more, especially his ANC, so that he will not need any more GCSF injections
• for the slight skin issues we are seeing, that it would fade quickly and not lead to anything serious
• for diligence in drawing blood from Jeremy’s central line – that they would be clean, easy, and complication free
• for Jeremy’s mental and emotional healing from the traumas he’s endured for the last 6 months and whatever he will have to face in the future
• that Alice and I would not get sick in order to care for our family
• that Matty would nurse easily and sleep well
• that Jeremy would maintain the desire to pray
• for wisdom in regards to the sleep challenges
• that God would give us the proper balance in caring for Jeremy and Matty

Please pray for the bone marrow transplant:

• that Jeremy would not encounter any graft vs. host disease, acute or chronic, especially anything severe or fatal
• that Jeremy would experience the maximum graft vs. leukemia effect, that cells produced by the new marrow would attack any cancerous cells
• that God would protect Jeremy’s skin, kidneys, liver, stomach, and intestines from both the donor cells and the medications used to treat and prevent gvhd
• that the mismatched blood type would not cause any issues for Jeremy

Please pray for our family and neighbors:

• for our neighbors in the bmt and oncology unit who continue to endure trials of their own, that they would find their comfort in Christ
• for our parents and families – that they would have rest and place their trust in Jesus and receive His comfort
• that we would be witnesses of God’s love and grace to our neighbors and the medical staff