We’re back.  Admission was 9/25 and Jeremy’s first day of chemo was 9/26.  He’ll be on a 5 day treatment regimen.  We’ll be in the hospital for an estimated 40 days while we wait for his counts to drop, then come back up again.  The majority of the 40 days is the “come back up” part.

We had a chat with Jeremy’s primary oncologist and his transplant doctor yesterday.  Because his particular leukemia is so agressive and his MRD after round 1 of chemo was positive, transplant is the best option for him as there is a very high rate of relapse.  I asked about how the search was going for a donor and a 10/10 perfect match still hasn’t been found.  We were told that if a suitable match isn’t found, they will likely use Alice as the donor and do what is called a haplo-identical transplant.  They basically take stem cells from Alice and manipulate it so that it will be suitable for Jeremy.  There are some added risks to this type of transplant, which I’ll get to in a later post.  Our hospital tells us that they have ample experience with these types of transplants.

I asked if we can wait a little longer after this round so that the people who registered at the many drives that were held for Jeremy could get into the system and be searchable (it takes 4 – 10 weeks for someone who registered to get into the system).  The doctors didn’t think this was a good idea because waiting longer means more chemo which means more toxicity.  If a suitable match isn’t found by the end of this round, we’re going to haplo-identical transplant.

And of course, we pray and wait to see if little brother will be a match.

It’s always difficult hearing this news and talking to the transplant doctor.  Jeremy isn’t just another patient, he’s our son.  He’s already endured so much with more to come.  And the worst part (or best part? depending on how you look at it), he doesn’t even know he’s sick.  The other day, when we were in the car, Alice told Jeremy that we would have to go back to the hospital so that he can get better.  Jeremy responded, “Oh.  Jeremy sick?”  We had told him before, at the start of diagnosis and treatment, but I guess it never really registered.

We continue to daily give God our worries, anxieties, and fears.  To be honest, it’s a very challenging thing to do just letting go.  But His word reminds us that his plans for this situation are better than our plans (Jeremiah 29:11-13).

As for how Jeremy’s doing, he’s taking it all in stride.  He’s been eating well and sleeping ok.  Sleeping’s only been ok because the eyedrops are back.  They’re 4 times a day, just like last round and they happen every 6 hours – 1:30am, 7:30am, 1:30pm, 7:30pm.  So he has to get woken up for them twice throughout his nighttime sleep.  Every time, he’ll look at us and the nurse administering the drops, frowning, and say, “It’s ok to cry.”  He cries throughout the entire ordeal and it’s a cry that we haven’t heard in a long time.  His crying is intense to the point of trembling.  Even with the crying, though, he does his best to keep himself completely still when the drops go in.  We’re told that the drops do sting a little, but Jeremy toughs them out as best he can.  Praise God for how he’s prepared Jeremy for this.

He also told us tonight before bed that his belly was hurting.  The doctor came by to take a look and didn’t hear anything odd or  feel any swelling.  It may be nausea or it may be gas, not really sure.  For now, he seems to be comforted by Alice’s hand on top of his tummy.

Other than the eyedrops and the stomach pain, Jeremy’s been doing alright.  He’s enjoying his puzzles, singing, dancing, making us laugh.  Alice and Jeremy aren’t allowed to sleep together while he’s actively getting chemo – a precautionary measure to protect little brother.  So, I’ve been the one keeping him company while he sleeps.  When I see Alice and Jeremy sleeping, they’re usually very snuggled up together, nose to nose.  When Jeremy and I sleep, he has his back turned to me.  We asked him about it this morning and, in front of the nurses, he told us why.  “Daddy breath smells.”  Can’t fault him for being truthful.  Love our kid.

Jeremy wanted to update this blog, too.  As I was reading to Alice what’s been written so far, he reminded me,  “And the pokes, and the surprise.  Buzz for Jeremy.”  He’s right, I forgot to mention that he had to get a flu shot last night, in addition to eyedrops.  He did so well with both that we gave him a Lego Buzz Lightyear toy as a reward.

And one more thing to add, baby brother is full term.  It’s any day now.

Thank you all again for faithfully reading these updates and praying through the prayer requests.

Praise God:

• for Him, for His perfect plans
• for how He’s prepared Jeremy for this
• for you all, the body of Christ that continually lifts Jeremy up in prayer
• Jeremy is eating well
• Jeremy is fever free
• baby brother is full term
• Alice and I continue to be healthy

Please continue to pray (new/updated items in bold):

• 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 God would provide with the whole process of finding a bone marrow match, the risks of transplant, and the anxiety of it achieving long-term remission for Jeremy
• that word would continue to get out about the need for a perfect bone marrow match and that one would be found for Jeremy
• that Jeremy’s little brother would be a match and that there would be a sufficient volume of cells in the cord blood to qualify for a good transplant
• that everyone who needs to be involved in the cord blood collection would be diligent and the collection and processing would go smoothly
• that Jeremy’s stomach pain would subside
• that Jeremy will not encounter any life threatening side effects during this round of chemo
• 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
• that God would continue to protect Jeremy’s heart from the lasting effects of the medication (mitoxantrone) from the last round
• that God would protect Jeremy from any bacterial, yeast, or fungal infections
• that there wouldn’t be any more line infections and that we wouldn’t need to replace it at any point during Jeremy’s treatments
• that God would protect Jeremy’s kidneys and liver from the medications he will receive during this block of treatment
• that God would continue to protect Jeremy’s central line and there would be no additional infections as a result of it
• that Jeremy would sleep well during this round of treatment
• that Alice and I would not get sick in order to care for our family
• that God would protect Alice and baby brother from all the emotional stress
• that baby brother would be full term before deciding that he wants out
• for adjustment for all of us when we welcome baby brother into the family
• that baby brother’s birth would be free of complications and that it would be quick and easy
• that Alice would recover quickly
• that baby brother would nurse easily and sleep well
• for our neighbors who are also enduring trials of their own
• for our parents – that they would have rest and place their trust in Jesus
• that God would give us wisdom in teaching Jeremy in the hospital environment
• that we would be witnesses of God’s love and grace to our neighbors and the medical staff