Praise God for two more quiet days. Jeremy’s been eating well, but he did complain of some belly aches today. And he had some discomfort from being on the potty. We also saw a slight rise in his temperature, but no fever.

Small update on the search for a suitable bone marrow donor: still no match found.  There were about 5 potential donors from Taiwan, but they ended up being poor matches.  The first drive (that wasn’t for Jeremy) was 8/20 and the people who registered then have not been added to the system yet.  If you registered at the drive for Jeremy at SFCAC on 9/9, please let me know if you’ve heard anything from NMDP about being added to the system.  Thanks much.

For the most part, the last two days have been like previous days. I sometimes think about putting on a helmet/shoulder camera for the entire day, just so I could capture everything that we do and our conversations with Jeremy. Yesterday, Alice had a prenatal appointment (they happen once a week now) and I had Jeremy to myself for his nap time. Before the nap, though, we looked out the window to try and find Alice, since the appointment was just across the street. She called my phone and we were able to get her in the right location so that Jeremy could see her. He said to her, “Hi Momma. I miss you, I love you.” Later, when it was time to nap, he had some difficulty falling asleep. He got up and said, “My sad.” I asked him why and he told me, “Mommy not here.” I let him know that Mommy would be back soon and that he’d see her again when he woke up. He seemed reassured by this and fell asleep shortly after.

Jeremy loves to run. Actually, his love for running may just be because he can. It’s probably more about the freedom, than it is about the running.  Here’s a video of him just running.  We do get concerned about him bumping his head or falling (his platelet count was not dangerously low), but since he’s unhooked, it’s hard not to just let him enjoy that freedom.

Alice and I had a moment last night. My sister brought cupcakes for us and when we were about to eat them, Jeremy asked if he could have some. We were told by doctors and nutritionists in the past that we should be wary of baked goods (especially in his neutropenic state) if they’ve been sitting out on bakery shelves, so we couldn’t let him have any. We were also told to be cautious about sharing food with him during the neutropenic period. Jeremy was a really good sport about this, but we were just so sad that we couldn’t give him something as simple as a bite from our plate. We gave him an alternative to the cupcake and he seemed satisfied with Cheerios and Puffins with milk.

Alice and I encouraged one another, reminding ourselves that this situation is completely in God’s hands. Jeremy saw my demeanor and asked, “Daddy sad?” I told him, “Yeah Jeremy, I’m a little sad.” He asked, “Why?” I told him, “Mommy and Daddy just want the best for you, that’s all.” He took that in for a bit. Then he looked down and said, “My sad.” We asked why he was sad and he told us, “Because Daddy sad.” I lost it. In my moment of weakness, my 2 year old son came alongside me. I told him that when I’m sad, I pray.  And so we did.

A short time later, when I took him to the potty, he looked at me and said, “Daddy, are you ok?” I said, “Yeah Jeremy, I’m ok. Are you ok?” He said, with the sweetest grin, “My happy now!”

Alice and I have these types of moments, more often than not, and at times we weep as we pray, crying out to God to sustain Jeremy through these treatments and the bone marrow transplant to come. We are continually reminded in God’s word that He, in Jesus Christ, knows our weakness and hears our cries.

“Therefore, since we have a great high priest who has ascended into heaven, Jesus the Son of God, let us hold firmly to the faith we profess. For we do not have a high priest who does not empathize with our weaknesses, but we have one who has been tempted in every way, just as we are – yet he did not sin. Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.” (Hebrews 4:14)

Praise God:

  • for Him, for Christ who empathizes with our weaknesses
  • for Christ, in whom we can approach God with confidence
  • that Jeremy continues to eat and drink well
  • that Jeremy remains fever free
  • that baby brother is doing well
  • that Alice and I remain in good health

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 the cord collection would be sterile and free of contaminants
  • that Jeremy would not experience any more stomach pain
  • that Jeremy would not experience any discomfort when using the potty
  • 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, fungal, or viral infections
  • that Jeremy would not encounter any infections so that he can remain unhooked from the IV pole for the duration of this round
  • 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 the recent dressing change would not cause any infections
  • that Jeremy would sleep well during this round of treatment
  • that Jeremy would continue to eat 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
  • 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 from baby brother’s birth
  • 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