Well, what can I say? Its a roller coaster... Yesterday, Ethan's hemoglobin (Hgb) dropped too low and we had to quickly line up a blood transfusion [10th grade biology refresher: hemoglobin are the molecules in the red blood cells that carry oxygen and carbon dioxide through the blood. Low hemoglobin causes anemia]. We finally received the blood around 11:30 today and took about 3 hours to transfuse. While we were nearing the end, Ethan had a sudden reaction to the blood and broke out in hives from head to toe. The nurses tried everything (Benedryl, steroids, Zantac, more steroids...) and the hives finally began to let up after about 2-1/2 hours. He'll be on Benedryl around the clock tonight. Yes, I'll be getting up every few hours to dispense it... brings back sleepless memories of having a newborn, but at least I won't also be changing diapers. If the hives are not all gone by morning, we'll go back into the office tomorrow.
Its hard to know if Ethan's reaction was to foreign blood in general, or to the particular blood he received. We've been told that chemotherapy patients receive blood from that blood bank that has been screened at higher levels since they often have suppressed immune systems. In any event, the blood Ethan reacted to today will be returned to INOVA Blood Services (along with another sample of his own) for additional testing to make sure there wasn't any kind of mistake in the cross-typing. Since we may never really know what caused the reaction, he will always be pre-medicated prior to any future blood transfusions.
Which brings me to my next topic: blood donations. We've spend a lot of days in the doctor's office and I can't even begin to tell you have many children we see everyday receiving blood transfusions. REAL PEOPLE NEED BLOOD DONATIONS FROM PEOPLE LIKE YOU!!!
Many of you have also asked if you can donate blood for Ethan. The answer is "sort of, but not really". Ethan is type A+. If anyone is of the same blood type or is a universal donor and wants to become a true "blood brother", please contact me and we can discuss the 100s of caveats that apply to directed blood donations and explore some options.
The best solution, though, is to give blood at any nation-wide blood donation center and request that the blood be donated "In the name of Ethan Gumabay". This will effectively give us a blood unit "credit" with INOVA Blood Services and will help defray insurance costs. More importantly, it will greatly help someone in need ... perhaps someone just like Ethan. If you're still on the fence about donating, consider this: a single unit of blood costs about $500. By donating, you earn bragging rights that may come in handy at cocktail parties. You can say that an hour of your time is worth $500 (then quickly excuse yourself to refill your drink before anyone probes any deeper...).
If I've got you convinced, you can call 1-800-GIVE-LIFE nation wide, or if you're local to the Northern Virginia area, call 1-866-256-6372 or visit http://www.inova.org/forms/bdsrequest.htm to schedule an appointment. They also offer a host of goodies once you're done... not just the lemon cookies anymore.
I nearly forgot the good news! By the end of the transfusion, Ethan's Hgb was back up to pre-treatment levels.
We've got two CBCs lined up next week for Monday and Wednesday. If they're high enough Monday afternoon, we may be admitted to begin our second chemotherapy cycle that evening. Otherwise, if they're high enough by Wednesday, we'll begin round 2 on Friday, July 5th. I'm hoping that the next cycle goes a little better now that we know a little more about what to expect and how best to manage it. The learning curve is steep, but we're keeping up.
Ethan's hair is nearly gone. I'd call what's left just fuzz. He really is quite handsome though and is anxious to break out our face paints and let the games begin!! The first thing he'd like me to paint on his head is a fire truck. I'm trying to talk him into a balloon ~ maybe two if I'm on a roll. I'm thankful that "Dr.'s Orders" are to wear a hat at all times while outside - that should help cover up my artistic deficiencies.
I know I keep saying it, but I want everyone to really understand how much I appreciate your kind words and support. There have been a lot of ups and downs over the last 2 months and I suspect things will just continue that way for at least the next year. Please continue to pray for his good health.
Warmest Regards,
Kim, Bert, Ethan and Kyra