Praise God, the last few days have been mostly uneventful.  Jeremy remains fever free and eats a bit better each day.  He is slowly regaining his independence and it’s great to see him get a bit more confident.

Sunday was a dressing change day, which we had to do ourselves.  We’re always nervous about anything having to do with his central line and this was no exception.  We only had one kit available, so we only had one shot at getting it right.  Jeremy was enjoying a movie without any complaints the entire time we were fumbling around to get it done.  Praise God, the change was done without any issues.

We had an almost-fever on Monday.  Jeremy felt a bit warmer than usual, but thankfully he cooled off.  It reminded us just how much we’re still in a touch-and-go situation.  A fever, slight cold, or questionable lab work will send Jeremy right back to the hospital.  Praise God for how He has sustained Jeremy these early days at home.

Since the last update, we learned that Jeremy’s ANC has been dropping, a result of the ganciclovir used to treat the CMV.  Because of this, he will be needing the GCSF shots 3 times a week, Mondays, Wednesdays, and Fridays.  On Monday, it was administered by our homecare nurse.  Today, in addition to drawing labs, our homecare nurse taught us how to do it ourselves, since they are only scheduled to come out twice a week.  We were taught how to draw up the medication, how the needle should be positioned, how to penetrate the skin, and how quickly to push the medication in.  Then it was time.  We sat Jeremy down, pinched a bit of thigh and injected the medication.  He cried through the entire thing, but sat entirely still.

It was terrible.  One of the worst things we’ve ever had to do.  We’ve had to hold him down for peripheral blood draws in the early days of diagnosis, the eyedrops during treatment, and that awful skin biopsy, but this time, we were the ones inflicting the pain.  It’s difficult to express in words exactly how it felt.  After we were all done crying, I asked Jeremy if he was ok, if he was mad at us because we had to poke him.  He said no, and gave us a hug.

The results from today’s labs indicate that his ANC may actually be going up on it’s own, possibly enough to counteract the suppressing effect of the ganciclovir.  We won’t know this for certain until labs are drawn on Friday, when we get seen in clinic.  If true, this may mean that Jeremy will not need any more GCSF shots.  Praise God for presenting this opportunity.  We are praying that Jeremy will not need any more of these injections.

Outside of that, Jeremy’s been mostly himself.  He’s playing, running, learning new songs, forming longer and more complete thoughts.  We’ll tell him it’s time to eat, or brush his teeth, or take a shower when he’s playing something and he’ll sometimes offer an alternative.  “How about brush my teeth, theeen I come back and play? How about that?”  Yesterday, we were playing “I spy” during dinner and it was his turn.  “I spy eye something…orange!” And before we even had a chance to guess, he pointed to the fruit bowl and said, “It’s orange!”  Jeremy continues to be an awesome big brother, giving Matty little kisses and rocking him when he’s crying.

He’s still very sensitive to certain things and will cry out when something doesn’t work out the way he had expected.  I suppose this is common with most toddlers, but part of me honestly feels that what he’s been through is definitely a part of how he responds to particular situations.

Home life continues to be something we are getting used to, trying to figure out a routine that works with a child who needs diligent medical care and a nursing infant, in addition to all the day to day things – cleaning, meal planning, etc.  We are blessed to have our families close by who help us do dinner everyday and supply and grocery shopping when needed.  Speaking of nursing infant, Matty is doing well, too, eating, sleeping, pooping, all things a baby should do.  It’s hard to believe that he will be 12 weeks soon.  He loves seeing faces and will get pretty excited once he locks on to a pair of eyes looking right at him.  I forget how cute babies can be.

Even with some of the new responsibilities we have for Jeremy’s care and the challenges of figuring out a routine, life outside the hospital is great and we thank God for each day that He gives us.  Each day we are reminded of how God carried Jeremy through the last 6 months, how He continues to carry him through these early days of recovery, and how He will carry him through the days ahead.

As for me, I will always have hope;
I will praise you more and more.
My mouth will tell of your righteous deeds,
of your saving acts all day long-
though I know not how to relate them all.
I will come and proclaim your mighty acts, Sovereign Lord;
I will proclaim your righteous deeds, yours alone. (Psalm 71: 14-16)

Praise God:

  • for His saving acts and righteous deeds
  • Jeremy remains fever free
  • Jeremy is eating better each day
  • Jeremy has the energy and desire to play and learn
  • Alice, Matty, 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 God would protect Jeremy from any scrapes or bumps as his new marrow is not producing enough platelets yet to avoid transfusions
  • that Jeremy would not experience any spontaneous bleeding from his nose, central line, or anywhere else on his body
  • that the CMV would be eliminated from his system, that the CMV would not infect Jeremy’s lungs or cause any issues with his eyes
  • that Jeremy would not encounter infections for fevers while he is home
  • that Jeremy’s counts would start trending up more, especially his ANC, so that he will not need any more GCSF injections
  • 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
  • that God would give us the proper balance in caring for Jeremy and Matty

Please pray for the bone marrow 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 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 are also enduring 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