Day -6
Praise God for a quiet day. Jeremy continues to eat and be fever free.
We got the results of the nose swab from last Friday. It came back positive for the rhinovirus. I mentioned in a previous update that this was negative, so I misspoke. Another nose swab will be performed tomorrow to see if anything grows out of it. Doctors tell us that this isn’t a huge deal. If it comes back positive again, he will be restricted to his room until he’s discharged (which we were preparing for anyway). One of the rare complications is that the rhinovirus may cause a viral pneumonia, which can be problematic. Jeremy hasn’t really had much of a runny nose since we’ve been admitted, but we are praying that the next nose swab will come back negative.
They also took a look in his ear again and said they can see a little bit of fluid in the inner ear. We’re told this isn’t uncommon, especially if he had the cold virus. We’re praying that this, too, will clear.
Today was Jeremy’s last dose of busulfan, so tomorrow will be his last dose of the Atavan. The fludarabine and clofarabine start tomorrow and will continue for the next 4 days up until transplant. We enrolled Jeremy in a clinical trial for a prophylactic antibiotic and he was randomized to be in the group that receives it. The purpose of the study was to measure the effectiveness of this antibiotic in preventing harmful bacterial infections. The doctors tell us, anecdotally, that they’ve seen kids on this antibiotic go through the entire course of treatment without a fever. The trade-off is that he has an increased risk of c-diff, the short name for a stomach bacterium. It can cause varying degrees of stomach pain and diarrhea. We are praying that we will see the effectiveness of it, without the c-diff.
With thanksgiving upon us, we’re inclined to reflect on the last few months to offer thanks to our Heavenly Father. True, the last few months have been the most tearful and challenging months we’ve ever had, with much more to come post transplant. But each pain experienced has been shadowed by the overwhelming joy we receive from God’s infinite love and mercy.
And a big thanks to all of you, who continue to read this blog and lift Jeremy up in prayer. The last few months have also been made easier just knowing that so many – family, friends, and strangers – are praying for our dear son. Thank you all for continuing to journey with us.
The Lord is, always has been, and continues to be good. We are thankful for the many blessings He’s poured out on our family. He has, very clearly, provided for and sustained Jeremy through these many months of treatment and we continue to see His provision now as we are in the bone marrow transplant unit.
Praise God (this is the short list, in no particular order):
- the only symptom of the leukemia Jeremy presented was excessive bruising
- Jeremy’s doctor did not dismiss the bruising as paranoid parenting and helped us follow through with blood specialists
- the leukemia never spread to his cerebral spinal fluid
- the leukemia did not have the less favorable genetic markers (FLT 3)
- God opened the way to one of the best treatment centers in the nation
- Jeremy experienced minimal side effects during each round of chemo
- Jeremy ate through each round of chemo and was able to avoid IV nutrition
- the infections Jeremy encountered were treatable and each one was cleared
- Jeremy did not need to get his central line replaced at any point during treatment
- every procedure (central line placement, bone marrow biopsies/aspirates, the skin biopsy) Jeremy’s endured has been complication free
- Jeremy’s liver and kidneys have not suffered severe, irreparable damage from previous rounds of chemo and antibiotics
- Jeremy’s brain, heart, and lungs continue to be in great shape
- Jeremy is in remission and his MRD is negative, allowing him to go in to transplant in great shape
- God has strengthened and sustained Jeremy with a great attitude, maturity, and energy
- God provided a donor in His perfect timing, allowing Jeremy to avoid total body irradiation and a riskier transplant
- over 1,000 people registered to become bone marrow donors as a result of the drives held for Jeremy
- Matty’s birth was free of complications and perfectly timed
- Alice recovered quickly and well after Matty’s birth
- Jeremy adjusted extremely well to having a little brother in our current situation
- Anthony’s employer has been extremely understanding, flexible, and financially supportive
- Alice and I continue to be in good health
- our families have really started praying and experiencing a relationship with God
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 Jeremy would clear the congestion/runny nose
- that nothing will come out of the nose swab that will be done tomorrow
- that the fluid in Jeremy’s ear will clear
- that Alice and I would not get sick in order to care for our family
- that Matty would nurse easily and sleep well
- that Matty’s diaper rash would heal and not cause him too much discomfort
- that God would give us wisdom in teaching Jeremy in the hospital environment
- that we would extend Jeremy an extra portion of patience and grace as we try to care for him with the added hyperactivity
- that we would adjust well to the new challenges of being in the BMT unit, with all it’s necessary rules and regulations
Please pray for the conditioning chemo regimen:
- that it would be effective in destroying any lingering cancer cells
- that Jeremy would not encounter any mucousitis (mouth, GI tract sores) that would prevent him from eating or drinking
- that Jeremy would not encounter any fevers during the neutropenic period
- 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’s behavior would be unaffected by the pre-medications he receives with each dose of chemo
- that the new chemotherapies Jeremy will receive over the next 4 days will not cause any nausea or vomiting or any additional harm to his vital organs
- that the new antibiotic will not cause any c-diff and that it would be effective in preventing any harmful infections
- that Alice, Matthew, and myself would not be harmed by the chemo we might come in contact with when changing Jeremy’s diapers
Please pray for the bone marrow transplant:
- that the potential 9/10 donor would follow through with donation, so that a haplo transplant can be avoided and thus avoiding total body irradiation and a riskier transplant
- that the donor cells would engraft, that Jeremy’s body would not reject the transplant
- that Jeremy would not encounter any graft vs. host disease, acute or chronic, especially anything severe or fatal
- 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
Please pray for our family and neighbors:
- for our neighbors who are also enduring trials of their own, that they would find their comfort in Christ
- for our parents – 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