Thursday, December 3, 2009

Hi all,
Hope everyone had a great Thanksgiving.  Ours was filled with food and family and fun. 
It’s been great having everyone together again.  Ethan is very happy to be home.  I think he really missed Caleb.  When Ethan sees him now, his eyes light up and he smiles brightly.  Ethan and Caleb love giving each other hugs and enjoy playing together as long as one isn’t playing with something that the other one wants.  No surprises there.
Ethan’s continuing to do well, getting better one day at a time. He’s at home all day, and is restricted from going out to restaurants, shops or other public places.  His immune system is still compromised and it will be quite a while before he’s ready for his coming out party.
As well as he’s doing, it’ll be a while before we’re comfortable that he’s out of the woods.  Today is T+36, and graft versus host disease (GVHD) will be a big concern for a while yet.    It’s my understanding that T+100 is the typical benchmark for post transplant complications, that’s a couple of months down the road.
We’ve quickly settled into our new routines at home. Ethan is at home during the day with Grandma Pat and Grandpa Bob taking care of him, Sarah and I are taking turns telecommuting from home, and Caleb is at daycare.  And we’re back to dog walking, making meals, etc..  It’s almost the routine we had before Ethan went for transplant.    
At the moment, Ethan receives 18-20 daily doses of 9 medications plus a 12 hour night time fluid IV to keep his kidney function up.  The medication routine starts at 5a, with two meds that we can usually sneak into his mouth without waking him up.  At 8a, we unhook his fluid IV, and he gets 6 meds, and probably his anti-emetic to help them keep them down and to help him eat some breakfast.  A couple more meds at 1p, hook up his evening fluids at 8, and then another 6 at 9p.  (And repeat)
We’re taking Ethan to the hospital on Mondays and Thursdays. Both days he gets blood drawn to check his blood counts and drug levels.  Thursday’s he’s there all day for his weekly enzyme replacement therapy.  Those will continue until his body starts producing the alpha-L-iduronidase that his body is missing.  Last week, they took a blood sample to check his chimerism (pronounced ky-mer-ism).  His chimerism will tell us how much of his DNA is from the donor and how much of it is his.  A higher chimerism (more of the donor’s DNA) tells us that the transplant is engrafting well and how well his body might start producing alpha-L-iduronidase.   This week, they’re also going to take a urine sample to check his glycosaminoglycans (GAG) levels. Higher GAG levels in his urine means his body is still not producing the enzyme on its own, lower levels mean that his body may be producing the enzyme and breaking up the GAG within the cells as it should do.
But his mood has been very good.  He’s active and exploring and playing.  He’s smiling and laughing and having a good time.  And he’s great about taking his medications.  When he sees the oral syringe, he takes his pacifier out and opens his mouth, takes the med and puts his pacifier back in.  When he’s ready for the next med, he takes his pacifier back out and opens right up.  He’s very patient with us when we have to connect or disconnect his IV.  He’s rolling with everything we’re asking of him and he’s a joy.
Caleb is also very happy to have Ethan home.  Caleb’s been very mature and understanding of Ethan’s medical needs.  He’s never asked why Ethan gets all this attention or gets to stay home from daycare, or shown any resentment at all. Caleb’s a great big brother, and we couldn’t be more proud of him.
My mother, Lilianne, left to return home to Florida this past Tuesday.  Sarah and I are very grateful to her for tireless work and support while she was here.  She worked at least as hard as Sarah and I did, and perhaps more.  Lilianne was typically at the hospital from 8-5.  She was his primary caregiver in the hospital much of the time, allowing us to go elsewhere and telecommute to save our leave time.  After her hospital work, she then went home and cooked dinner, and she stocked our freezer to boot. We’re also grateful to my step-father, Paul (from whom Ethan takes his middle name), for parting with her for such a long period of time. I think this may be the longest they’ve been separated in their 28 years of marriage.
When Lilianne first came out in October, I told her that we were going to use her as much as we could while she was here so that we could “save” Sarah’s parent’s energy and efforts for the medium to long term help that we’ll need.   Sarah’s parents live about 15 minutes from our house and we know that we’ll need to rely on them quite a bit over the next few months. Now that Ethan is home, Sarah’s parents, Bob and Pat, are helping out and taking care of Ethan while one of us telecommutes from the guest room. 
It looks like that will be the routine for a while to come.  Routine is good. Every day that’s routine is one where Ethan is getting better and better.  Let’s hope the next two months stay routine. 
I know that there are a couple of friends of the family who are pharmacists and others who want to learn more about Ethan’s treatments.  For those folks, I’m including a list of Ethan’s current medications, below.  For the rest, thanks for checking in on us, and I hope your holiday season is shaping up to be a great one!
Current Medications List:
Cyclosporine:  To prevent graft-versus-host disease
Mycophenolate (Cellcept®): To prevent graft-versus-host disease
Fluconazole (Diflucan): To prevent fungal infections
Acyclovir: To prevent viral infections
Lansoprazole: To decrease stomach acid
Ursodiol: To decrease bilirubin
Labetalol(Nomodyne): To decrease blood pressure
Amlodipine (Norvasc): To decrease blood pressure
Ondansetron (Zofran®): To decrease nausea or vomiting