I realize that I haven’t been updating very much on how Jeremy’s been, so thought I’d write more about him in this one.

In short, he’s a rock star.  Praise God for how He’s strengthened and sustained Jeremy through all these rounds of treatment – from the harsh drugs themselves to his super cooperation with the nurses and doctors (and us), Jeremy’s been a soldier through all of it.

The medical staff often tell us how good he is with everything and we never really believe them because we assume they’re merely trying to lift our spirits.  At home, though, we can see a bit of what they mean.  There is daily care for Jeremy while we are home.  We are responsible for flushing and hep-locking his central line as well as ensuring that he takes the medication he’s been prescribed.  We also need to brush his teeth 2-3 times a day with a fluoride toothpaste, followed by a mouthwash to help clear his gingivitis.

He generally sits still for his daily line flush and often helps, giving us the line we ask for so we can keep our hands as clean as possible.  He also likes to participate, sometimes requesting to push the syringe himself.  He’s great with brushing his teeth, too.  Before we start, he’ll say “The strawberry one (toothpaste) and the mouthwash? Two of them?”  He opens wide for us to get the hard to reach spots and he’s learned how to rinse and spit.  We’ve tried the mouthwash and it’s very similar to Listerine, so it does burn the mouth a bit.  For Jeremy, it causes some pain.  When we brush his gums with the swab, he’ll say, “Ow!” But he just toughs it out and will lets us swab the rest of his mouth with it and rinses afterward.  When it’s time for his medication, he never fights it and sometimes confirms that we’re giving him the right ones by asking, “Septra? Fluconazole?”  It also helps that his meds are grape and cherry flavored.  He’s been a real trooper with all that and more and we thank God for how He’s prepared Jeremy for all this.

He’s been adjusting well to having a little brother around.  He knows Alice needs to nurse Matty often, but he never gets mad about it.  Usually, if he sees that Alice is preoccupied, he’ll ask for me and just comes to me when he wants to be carried.  Mom is still the preferred sleeping companion, though.  I tried to nap with him the other day when Alice had a dental appointment, but he wasn’t having it.

Today, when I was taking him to the potty before dinner, he asked me, “Daddy, do you want to do puzzle with me?” I, of course, said yes.  He went on to tell me, “Daddy can do puzzle with me.  Mommy cannot do puzzle.  Mommy is busy feeding 弟弟 milk.”

He’s been a great big brother, too, often trying to soothe Matty when he’s crying by shushing rhythmically and rocking him.   The other day, Matty scratched himself on the forehead and started wailing.  We told Jeremy what happened and he patted Matty, telling him, “It’s ok 弟弟, it’ll get better.”  He also loves to carry Matty.  There have been a few consecutive nights where Jeremy will want to carry Matty as one of the last things he needs to do before going to bed.

Jeremy’s considerate of us as well.  Last night, I was sleeping with him while Alice was nursing Matty in the living room.  Ten minutes into bed time, he looked up, pointed a finger up and told me, “One second.  I go check on Mommy.  I be back in one second.”  He went out to check on her, asking, “I check on you.  You ok, Mommy?”  She said that she was ok and he was back in the room after a few minutes.  I asked him if Mommy was ok and he told me yes.  I followed up with, “How come  you wanted to check on Mommy?”  And he responded, “Because 弟弟 scratch Mommy.”  Matty had scratched Alice the other day when he was fussing about before being fed and Jeremy wasn’t very happy about it.  He disciplined Matty, “No! Stop!”  I guess last night was to check to be sure that it didn’t happen again.

He continues to run and jump around the house and love every minute of it.  He’s been really into puzzles, Legos, coloring, and drawing and he’ll invite us to participate with him all the time.  He’ll be outside doing a puzzle, I’ll be trying to clean in the room and he’ll yell out when he’s finished, “Daddy! Want to come here?”  He’s always eager to share his accomplishments with us.

Jeremy often comes alongside us in our tearful moments.  We generally don’t hide anything from him.  He’s keenly aware of his environment and the going-ons around him, so there’s really no point in hiding anything anyway.  Before a nap the other day, Alice was reflecting on Jeremy’s current situation and got a bit misty eyed.  Jeremy took notice and comforted her, asking, “You ok Momma? Need tissue?”  Alice told him that she was just sad because Jeremy is sick and told him that she prays for him to be better.  Jeremy prayed with her: “Dear God, pray for Mommy and Daddy and 弟弟.  Pray Jeremy no more sick.  Dear God, please heal me.  Pray for Disneyland.  In Jesus name, Amen.”  He’s been wanting to go to Disneyland for a while.  He and Alice had a countdown for the day of our trip, but it was abruptly canceled when he was diagnosed.  We couldn’t take him in between rounds and definitely couldn’t take him during this break because we were instructed to avoid crowded areas, especially areas with young children.  We substituted by taking him to the Disney Store in the shopping mall and playing Disneyland Adventures on the XBOX Kinect.

Jeremy’s shown a lot of growth and maturity over the last few months.  He’s been coping with all the pokes, prods, and procedures extremely well.  Today, when I was brushing his teeth, he pointed to his bone marrow aspirate and lumbar puncture sites and told me, “I have lots of pokes.  One here and one waaaay up here.  Two of them.  I not cry, though.  It will heal.”  I’m impressed but also saddened by this.  Impressed, of course, because he’s got such a great attitude about everything that he’s endured and he’s able to communicate so clearly about it.  But saddened because this is what’s become normal for him.  Doctors tell us that, in general, kids his age will forget any of this ever happened.  But with Jeremy, I’m not so sure.  When he sees a tourniquet, he remembers all the needle sticks for blood draws he had to have before his central line was placed.  He even remembers the toys he was given for those draws.

In fact, I don’t want him to forget any of this.  I want him to remember this trial that he endured so that he would remember God’s goodness and faithfulness through all of it.  I want him to remember that God strengthened, sustained, and provided for him in one of the more difficult times of his life.  Us, too.  God is so near and His provision so clear.

I’ll end this post with some videos of Jeremy in action.

Jeremy’s showed us his musical side the last few months. Well, Alice has always seen it. But I’m getting to see more of it. We’d love for him to pick up a musical instrument one day. Here he is jamming on his air guitar to The Rivieras’ California Sun.

Here’s Jeremy singing Matty the alphabet song. I stopped recording too soon. Jeremy finished the song with a kiss on the cheek for Matty.

This is Jeremy playing with his magnetic letters on our fridge. You can see in this video that he had a bit of a runny nose.  It’s gotten better, but it hasn’t gone away completely yet.  We are praying that he’ll clear it before he is admitted.

Praise God:

• for Him, an ever present help in trouble
• for His comfort and peace
• for how He has created and prepared Jeremy for this
• Jeremy remains fever free and continues to eat well
• we’ve been able to enjoy the familiarity of home
• our families continue to provide unconditional support
• for you all, who continue to read these long updates and pray through the prayer requests

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 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 protect Jeremy from any bacterial, yeast, fungal, or viral infections
• that Jeremy would clear the congestion/runny nose
• 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