A delayed update.  I’ve been working on this update for the last five days, but any free moment is a decision between sleep and updating and I’ve been choosing sleep lately.

Praise God for a nice, quiet week at home.  Jeremy was scheduled to get labs drawn and a dressing change last Thursday and we were told that the dressing change we did was fine.  It should be ok to wait until his next clinic appointment to get it changed.  His lab results came in shortly after they were drawn and praise God, his counts are looking great and still trending upward.

Jeremy actually had a few appointments the last few days.  Last Thursday was the clinic appointment and a dental exam.  Last Friday was an appointment with the audiologist.  The dental exam was to check to be sure that Jeremy didn’t have anything in his mouth that might cause a problem for him during his transplant stay in the hospital.  Turns out, Jeremy’s got a bit of gingivitis.  We were prescribed an alcohol free mouth rinse that should resolve it in a few days.  His audiology appointment was fine and just to get a baseline before transplant.  Jeremy was super cooperative throughout the entire thing.

We received a call from the medical staff and have a few more appointments coming up this week.  Tuesday morning, Jeremy will have labs drawn, a dressing change, and a cap change.  Following that will be a bone marrow aspirate to determine his remission status and a lumbar puncture for intrathecal chemotherapy.  Wednesday morning is an echocardiogram to 1) check the condition of his heart and 2) get a baseline for his next admission.  Thursday morning is a consent meeting with the bone marrow transplant team, which is scheduled to be a few hours long.  It will likely be about the benefits, risks, side effects, conditioning regimen, etc.  I’ll update when we get more details.

We were also told by the bmt team today that the donor has passed their physical exam! Praise God! The doctors are confident that the donor will also pass the infectious disease workup and will move forward with donation, so they’ve moved Jeremy’s admission date to 11/18.  I’ll continue to update when we hear more.

It’s been nice being at home.  There’s a lot to do before we go back to the hospital so that we can get the place ready for Jeremy after transplant – lots of cleaning, throwing things out, reorganizing.  The place needs to be as clean as possible for Jeremy’s post transplant recovery.

Jeremy is a joy.  I don’t think a day goes by where he doesn’t make us laugh or go “awww.”  He randomly gives hugs, kisses, and tells us he loves us.  He’ll do that for Matty, too.  He really loves his little brother.  He’s learned a few more parts to some of his favorite songs, too – the Ramones’ California sun and our hymn of comfort “Great is Thy Faithfulness.”  His language skills continue to develop and improve, so conversations with him are longer, more thoughtful, and hilarious.  We received a free surprise Lego mini figure in a recent order and it ended up being a hippie.  We had the following exchange:

Me: “Oh, a hippie!”
Jeremy: “Hippie?”
Me: “Yes, a hippie.”
Jeremy: “Oh. Mommy, do you like hippies?”
Alice: “Yes, God wants us to love everyone.”
Jeremy: “Daddy, do you like hippies?”
Me: “No, Daddy doesn’t like hippies.”
Jeremy: “Well, Mommy likes hippies. Well, Jeremy likes hippies.”

Of course, there are minor challenges, too.  It’s hard to be at home and not be able to take Jeremy out too much.  We had plans to take him to Gilroy Gardens, but were told by doctors and nurses that it wouldn’t be a good idea to take him to very crowded places, especially before transplant, as they don’t want him to get sick with an infection prior to transplant.  We’ve placed some stricter rules around visitors, too, which will have to carry over to recovery when transplant is over.  Doctors suggest no visitors who have been sick in the last 7 days and we’ve expanded it to no visitors who have been around anyone who’s been sick in the last 7 days.  Jeremy misses his friends and it’s unfortunate that his age group is the most prone to germs.  Doctors have placed a strict limitation on his visitors in order to prevent the introduction of any new bacteria.

Jeremy’s sleeping continues to be an issue.  Both nap time and bed time can be an hour or more of him just laying there, trying to fall asleep.  Other times, it may be an hour of him getting up and down, playing with his tubes, and tossing around, keeping himself awake.  We’re more sad than we are frustrated because the sleep is so important for him.

Jeremy’s also had a bit of a runny nose and has been sneezing the last day and a half.  We brought this up with the bone marrow transplant docs and they want to check him over just to be sure that his lungs are clear and that there won’t be any issues for him during transplant.  We are praying that this simple runny nose and sneezing is just that – a simple runny nose and sneezing and that it would not lead to anything serious.

As for Alice and myself, we, as the hymn suggests, experience “new mercies” daily.  Everyday is a blessing.  Still, we continue to have days where we quickly accept God’s comfort and other days where it takes a bit longer, primarily because of our worries, anxieties and fears.  But, we are reminded by His promises in His word.

“So do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand.” (Isaiah 41:10)

Praise God:

• for Him, that in Him, we need not fear
• Jeremy remains fever free and continues to eat well
• Jeremy is loving and considerate to his little brother
• the dressing change we did hasn’t caused any issues for Jeremy
• Jeremy’s donor passed the physical examination
• our families continue to provide support during our time at home
• that we are surrounded by the body of Christ, the fellowship of believers who continue to pray and encourage

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 Jeremy would stay in remission while we wait for bone marrow transplant admission
• that the bone marrow aspirate tomorrow would be performed without any issues and that the results would show that Jeremy continues to be in complete remission
• that the echocardiogram on Wed, 11/7 would show that Jeremy’s heart is in perfect working condition and unaffected by the chemotherapies he’s been treated with
• that the Lord would grant us wisdom in our meeting with the bone marrow transplant team, to advocate for Jeremy
• that Jeremy’s runny nose and sneezing would not be a precursor to anything serious or anything that would cause issues for him during his transplant
• that the potential 9/10 donor would be a suitable donor for Jeremy, in perfect health and free of infectious diseases (hep B, etc)
• 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
• 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 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 God would guide the doctors in the decisions being made regarding Jeremy’s central line
• that Alice and I would not get sick in order to care for our family
• 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 and receive His comfort
• 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