Praise God for a quiet two days.  Jeremy continues to eat well and be fever free.  He’s also got a lot of energy, which can be hard to manage, but is still a praise.

Praise God for a great medical staff.  The nurses are awesome.  They’re attentive and helpful and it’d be hard to do things without them around.  Of course, they’re taking care of Jeremy, administering his meds and chemo, but they’ve been really helpful with taking care of our linens, picking up our trash, taking our finished food trays, getting supplies, and answering all of our questions regarding the rules back here in the BMT unit.  The doctors are attentive as well and patient with our questions regarding his treatment, transplant, and recovery.

Physical therapy came by on day -8 to get a baseline on how Jeremy is doing pre-transplant so that they have something to compare to post-transplant.  They gave us some tips on how to keep Jeremy active and mobile.  Jeremy’s pretty good about that himself, though, with all the jumping on the bed.  We allow it because there’s only so much he can do being attached to the IV pole, but we have a rule that he has to hold our hands if he’s going to jump around.  He’s pretty good about it, though sometimes this rule gets ignored.

It continues to be a challenge here with the new rules and Jeremy’s added hyperactivity.  Since we can’t eat in the room, we’re not able to multitask as much as we were able to before.  Jeremy requires constant attention because he’s attached to the IV pole and not being in the room for any period of time can make it difficult for the one left alone.  Because he’s been much more active than he’s been in the past, he can be very difficult to keep still and he’s been very disobedient.  In previous rounds, he was great with bath time.  Bath time now is harder because he’s constantly wriggling around and refusing to cooperate.  Same with taking him to the potty (you can imagine the potential mess) or brushing his teeth or washing his hands.  Washing his hands has an additional challenge, too.  One of the rules is that he can’t use water from the tap.  We get one bottle of sterile water and one bottle of sterile soapy water to use for the day.  We have to wash his hands by pouring water over them while holding him at the same time.  We could put him down on a chair, but doing that frees the use of his legs and he’ll start hopping around on that chair and touching things he shouldn’t be touching.  This didn’t use to be a problem, but with his refusal to listen, he’ll push buttons on the IV pumps or tug at his lines.  I know it seems unreasonable to try and reason with a 2 year old, but we always felt and truly believed (and still do) that Jeremy was the exception.  When we told him that only nurses and doctors touch the machines, he would know not to touch it.  Sure, he’d break that rule sometimes, but now it is consistently and willfully ignored.  We really hope that this bit of hyperactivity is a temporary result of the Atavan and will subside when it is discontinued. The hyperactivity can be very frustrating, but it’s hard to stay frustrated for too long.

Tonight was a pretty good example.  We decided to take turns keeping Jeremy company for bedtime.  Tonight, it was my turn and Jeremy kept getting up and throwing himself all over the place.  When I had enough, I told him, “Ok Jeremy, if you don’t lie down and go to sleep right now, you can go to sleep by yourself.  Daddy will go sleep on the couch.”  In the past, this would have worked in getting him to lie down, at least.  But not tonight.  He called my bluff.  After I told him he could sleep by himself, he took a minute, looked at me, and said, “Go ahead.  Go sleep on the couch, Daddy.”  I couldn’t hold it in and burst out laughing.  Of course, doing this throws all credibility out the window, but I couldn’t help it.  When I moved over to the couch, he told me, “Don’t play, Daddy.  It’s nap time.”  This is similar to something I’ve said to him often, “It’s bedtime.  Not playtime.”  After about 10 minutes he realized sleeping alone isn’t all he thought it’d be and asked me to sleep with him.  Again, it’s hard to stay frustrated for very long.

I sometimes forget that Matty needs to soldier through some of this as well.  Because Jeremy requires so much attention, Matty sometimes can be left crying for a minute or two before we can get to him.  This may be typical of simply being the second child, but we feel awful for just leaving him there sometimes.  He’s also developed a diaper rash which causes him some discomfort.  He has a two month appointment coming up (hard to believe that two months has already passed since he’s been born) so we’ll have to figure out what to do there.  One of the reasons Matty was permitted to stay with us during transplant was because he would be in isolation, just like the rest of us.  His well-baby visits are allowed, but there’s also the rule that anyone who leaves the hospital will need to do a two minute scrub upon return.  But how do we scrub down Matty? We’ll have to ask the nurses about that one.

Of course, we didn’t have to bring Matty with us, so these challenges could have been avoided.  But it was important for us to be together as a family and Matty was nursing, so it was right decision for us.  Also, Jeremy loves his little brother.  He’s been really protective and when Matty’s not in his line of sight, Jeremy will ask, “Where’s 弟弟?”  Jeremy often asks to carry Matty and when he does, will always insist on giving him multiple little kisses on the head or cheek.  It’s the cutest thing, but sadly, it’s been somewhat tainted by the fact that Alice and I have been conditioned to question everything that Jeremy comes into contact with, wondering if it’s ok for Jeremy to kiss his little brother because of any germs he might pick up.

Still, even with the challenges, there are many praises.  Each day if filled with God’s blessings and mercies.  Every time we hear Matty cry or see his wide-eye stares, we are thankful that God has added to our family.  Every bite of food that Jeremy takes is a praise.  Every time we hear him laugh, or call us “Mommy” or “Daddy”, or feel his little arms squeeze tight when he hugs us, we are reminded of how God is ever present.  We cannot get through these days without the love of God, our father, the grace of Christ, our savior and the fellowship of the Holy Spirit.  May He receive all the glory and honor from this situation.

Praise God:

• for Him, His love, grace, and peace
• Jeremy continues to eat well
• Jeremy remains fever free
• Jeremy no longer has a runny nose
• Jeremy continues to be energetic and playful
• for a wonderful medical staff
• we are all here together
• we have been blessed with supportive family and friends
• Alice and I continue to be in good health, with the strength that He provides us to care for our children

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 Jeremy would clear the congestion/runny nose
• that nothing would grow out of the nose swab done last Friday
• that Alice and I would not get sick in order to care for our family
• that Matty would nurse easily and sleep well
• that Matty’s diaper rash would heal and not cause him too much discomfort
• that God would give us wisdom in teaching Jeremy in the hospital environment
• that we would extend Jeremy an extra portion of patience and grace as we try to care for him with the added hyperactivity
• that we would adjust well to the new challenges of being in the BMT unit, with all it’s necessary rules and regulations

Please pray for the conditioning chemo regimen:

• that it would be effective in destroying any lingering cancer cells
• that Jeremy would not encounter any mucousitis (mouth, GI tract sores) that would prevent him from eating or drinking
• that Jeremy would not encounter any fevers during the neutropenic period
• 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 Jeremy’s behavior would be unaffected by the pre-medications he receives with each dose of chemo
• that Alice, Matthew, and myself would not be harmed by the chemo we might come in contact with when changing Jeremy’s diapers

Please pray for the bone marrow transplant:

• 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 and a riskier 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 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

Please pray for our family and neighbors:

• for our neighbors who are also enduring trials of their own, that they would find their comfort in Christ
• for our parents – 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