Praise God for more uneventful days.  Jeremy remains fever free and continues to be in good spirits and full of energy.

The medical report: Homecare comes on Mondays and Thursdays to do general assessment, blood labs, and the GCSF injection.  Last Thursday, Jeremy’s labs showed that his ANC might be holding on it’s own, so we were instructed to hold off on yesterday’s GCSF, hoping that his counts would be high enough to avoid the shot.  It’s a bit of a gamble to hold off on this shot in the morning because in the morning, our homecare nurse can give it.  We don’t get the lab results until sometime in the afternoon, well after the homecare nurse has left.  So, if the lab results show that his ANC has dropped, we would need to give the GCSF shot ourselves.  We don’t want to give these shots ourselves because 1) we’d much prefer a professional do it and 2) we really, really don’t want to give these shots ourselves.  What can we do but leave these things up to the Lord?

The lab results came back around noon and unfortunately, his ANC had dropped.  We had to give the GCSF shot ourselves.  We always let Jeremy know ahead of time so that he has some time to let it settle in.  When it was time to give him the shot, he was crying, but cooperative.  I still felt the needle break the skin and it was still an awful feeling.  I don’t think that will ever change.  Still, praise God, it went by quickly and there weren’t any additional difficulties.  And praise God, He gave us the strength and confidence to do it.

With the lab results yesterday, it was decided that Jeremy will need the GCSF injections twice a week.  Since our homecare nurse is here twice a week, she will be giving those injections instead of us.  Praise God for His provision in Jeremy’s care.

Praise God, the lab results also indicated that Jeremy may be making platelets on his own!  We’ll probably have to see with the next lab draw, but it’s great to see that he hasn’t needed any blood product transfusions since that one time after discharge.

We were also taught how to draw blood from his central line for lab work.  There are a lot of steps in the process and it can be challenging, especially if something goes wrong and we have to troubleshoot.  It will be some time before we have to do it ourselves, but it was important for us to learn.

Praise God, we also learned, from the results of the bone marrow aspirate, that Jeremy remains in remission! We should hear back soon regarding the chimerism status.

Tomorrow will be an appointment in clinic.  Jeremy will get pentamidine and IVIG.  Pentamidine is a medication given through his central line that is intended to protect his lungs from a very severe form of pneumonia.  IVIG is meant to support him by providing the antibodies that his new immune system isn’t creating yet.  We are praying that these will be effective in supporting Jeremy, without any added side effects.

Outside of that, the last few days have been nice and quiet.  Jeremy is eating well.  Part of me wonders if what the doctors said is true – about his taste buds changing and rejecting some of his favorite foods.  Praise God, when Jeremy takes a bite of avocado or eats a spoon of rice and fish he has a huge grin on his face.  He’s even willing to try new foods, always asking us what we’re eating and ready to try whatever it is, unless it’s green and leafy.  That could be a 2-year-old thing.

There have been a lot of Jeremy moments – moments that make us laugh, cry, or go “awww”, maybe all three at once.  There was one morning where he woke up to see Alice holding Matty.  Instead of crying or being jealous (which he has been and will probably continue to be at times), he just watched and smiled.  Alice put Matty down on the bed next to him and Jeremy was all smiles, looking lovingly at his little brother.  There was another time, in the middle of the night when Jeremy had gotten up to use the potty (a result of the overnight fluids he is getting).  When we got back from using the potty, he noticed that Alice’s shoulder was exposed and he pulled the sheet up to cover her.  When we found out that his platelets went up on his own, I told him and gave him a high-five.  He reciprocated, threw his hands up, and shouted, “Praise the Lord!”  He went to tell Alice, who was holding Matty, and gave her a high five as well.  He walked away, but stopped short, turned around toward Matty and said, “High-five, too, 弟弟!” It was great to see him include Matty in the celebration.

Matty has been doing well, continuing to do what babies do.  He’s really starting to chatter away now, especially when he makes eye contact with our faces.  His eyes will squint a bit, he’ll purse his lips and start cooing.  We celebrated his 3 month birthday a few days ago.  We did the same for Jeremy when he was 3 months, so thought it’d be fun to do it for Matty, too.  He didn’t get to enjoy the cake, but Jeremy loved it, especially the cream.  Speaking of, Alice baked that cake.  I have no idea how she managed to squeeze a cake out of our very busy days, but she did and it turned out great.

There continues to be challenges with sleep for Jeremy.  We picked up a habit of sleeping with Jeremy in the hospital and it’s been difficult for him to sleep on his own at home.  On top of that it can take about an hour or two for him to fall asleep even if one of us is sleeping with him.  There are mixed feelings about it.  On one hand sleeping on his own would give him the opportunity for better sleep in the long run and we’d have the time to clean the house to keep it as germ free as possible for him.  On the other hand, he’s had a really rough 6 months and is in the very early days of recovery, with unknown challenges ahead.  We want to cherish every moment that we have with our children, especially in the midst of all that’s been happening.  The balance is hard to find.  When asked today why it took him so long to nap, Jeremy responded, “Because I’m thinking about a lot a lot of things!”  That’s not a typo.  He said “a lot” twice.  I asked him what he’s thinking about and he told me, “I’m thinking about iPad, Buzz, Zurg, Legos.”  Praise God Jeremy is thinking about his toys and not anything related to the hospital.

We continue to pray frequently, lifting Jeremy’s recovery and ultimately, his healing to God.  I mention often how completely broken we are as a result of Jeremy’s diagnosis and the last 6 months.  But, I do believe we are broken in the right way, now being able to fully experience God’s love, goodness, faithfulness, and mercy.  He has always shown these attributes to us, but I am ashamed to say that I was blind and numb to it in the past, being so occupied with work or my own selfishness.  Praise God for giving us the opportunity to really fellowship with Him.

“As for you, you were dead in your transgressions and sins, in which you used to live when you followed the ways of this world and of the ruler of the kingdom of the air, the spirit who is now at work in those who are disobedient.  All of us also lived among them at one time, gratifying the cravings of our flesh and following its desires and thoughts.  Like the rest, we were by nature deserving of wrath.  But because of his great love for us, God, who is rich in mercy, made us alive with Christ even when we were dead in transgressions—it is by grace you have been saved.  And God raised us up with Christ and seated us with him in the heavenly realms in Christ Jesus, in order that in the coming ages he might show the incomparable riches of his grace, expressed in his kindness to us in Christ Jesus.” (Ephesians 2: 1-7)

Praise God:

• for His great love, His grace, His kindness
• for His strength and confidence with the last GCSF injection
• Jeremy remains in remission
• Jeremy continues to be fever free, playful, and energetic
• Jeremy’s platelets are coming up on their own
• Matty continues to be well
• Alice and I continue to be in good general 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 not reactivate
• that Jeremy would not encounter infections for fevers while he is home
• that Jeremy the pentamidine and IVIG would be effective in supporting Jeremy and that he would not experience any side effects
• that Jeremy’s counts would continue 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
• for wisdom in regards to the sleep challenges
• 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