Medications or Drug Store?

Well Henry was discharged a few days ago and we are back at the Ronald McDonald House. The Transplant has been postponed about 5 days due to Donor scheduling issues. Henry will go In-patient on the 23rd of July to begin conditioning for the transplant. They give him several days of intense drugs to basically wipe out what bone marrow he has, so there is room for the new bone marrow to take over. The transplant should happen on the 30th of July. From what we have been told the donor is a 30-40 year old white Caucasian female living overseas (most likely Europe). Because it is an unrelated donor we do not get any further info now. The Donor has the option to give actual bone marrow (which involves over 100 punctures to each hip bone and several days of soreness afterwards), or to give peripheral stem cells (much less painful, involves taking certain drugs for a week which makes your body produce large amounts of stem cells, then the donor gets hooked up to a machine similar to a dialysis unit which filters the stem cells out of the blood and sends the blood back). It sounds like the donor chose to do the less painful method.

The doctors said historically they prefer actual bone marrow (the painful way) but said recent ongoing studies show the stem cells (though they take 5-10 days longer than straight bone marrow) might be better for the host by taking longer to take root and grow, this minimizes the immediate risk of Graft vs Host disease and makes it easier to keep under control.

On a side note, One of the applications I was doing this last week for Tefra required a list of all medications taken by Henry in the last year. It took a while but with some help from by wonderful wife she compiled the list here is what it looks like.

 Acetaminophen (Tylenol)
 Albumin
 Alfentanil
 Alteplase
 Atovaquone
 Azithromycin
 Bactrim
 Cafeprime
 Calcium Carbonate
 Cefazolin
 Ceftazidime
 Ceftriaxone
 Clindamycin
 Cladribine
 Cytrabine
 Diphenydramine (Benedryl)
 Ergocalciferol
 Emollients (TPN)
 Epinephrine
 Fat Emulsion (TPN)
 Fentanyl
 Fluconazole
 Flu Vaccine
 Furosemide (Lasix)
 Gentamicin
 Glycopyrrolate
 Hydrocortisone
 Hydroxypropel Methylcellulose Ophthalmic (eye drops)
 Heprin
 Ioversol (contrast)
 Immune Globulin Intravenous (IVIG)
 Lansoprazole (Prevacid)
 Lidocaine topical
 Lorazepam (Atovan)
 Lysine
 Methadone
 MethylPrednisolone
 Mercaptopurine
 Meropenem
 Metoclopramide (Reglan)
 Morphine
 Midazolam
 Ondansetron (Zofran)
 Neostigmine
 Oxycodone
 Propofol
 Palivizumab (synagis)
 Pantoprazole
 Pamidronate
 Parenteral Nutrition (TPN)
 Pegfilgrastim (Neulasta)
 Poly-vi-sol
 Potassium Chloride
 Polyethylene Glycol (Miralax)
 Prednisone
 Ranitidine
 Ribivirin
 Tryptophan
 Ursodiol
 Vinblastine
 Vancomycin
 Vecuronium
 Voriconazole

That's almost as bad as the ingredients list on a bag of Cheetos!

I've had a number of people calling me asking if they can help with a fund-raiser or something. We are grateful and ask for a rain check right now. We found sort of a loop hole in the Denali Kid Care program which defines someone as Disabled if they are in-patient in a hospital for 30 days. If he qualified as disabled he immediately qualifies regardless of income or assets. Henry has had several 30+ day stays in-patient. If this qualifies us then Denali Kid Care will cover the remainder of the Bone Marrow Transplant (not covered by insurance). The other program we applied for is called TEFRA. If Henry gets denied coverage under Denali Kid Care we are told there is a good chance he will qualify for TEFRA which also will cover the expenses not covered by the insurance. Without any complications we are looking at about $250,000 - $350,000 not covered by the insurance.

We are waiting until we hear back about these 2 applications before going forward with any fund-raising decisions. Oddly enough if we don't do things just right, fund raising could disqualify us from both of the programs. So we are treading lightly and waiting. My work has been more than understanding and continues to pay us wages. I voiced concern about not earning the income I was receiving. I was quickly told not to worry, they would get the work out of me later. :) I guess what I am saying is financially we are doing alright at this time.

For those of you who have money burning a hole in your pocket I can suggest the Ronald McDonald House Charity. http://www.rmhcseattle.org/ which has been the greatest thing for us and keeping our family together. Hotels around here cost about $120+ per night (and those are the cheap ones) They also operate a free shuttle to and from the 2 Hospitals we visit on a daily basis making it even more convenient not needing to rent a car or pay for parking.

That's it for now, I'll try and post more pictures and less words next time.