COOKIE - Humility, Despair and Hope 11-15-06

Dearest Friends and Family,
And we thought we had had a difficult week when I LAST wrote! Ha! Keeping it light, now that we can once again see the light at the end of the tunnel, I'll give you the rundown......

COOKIE's and/or our euphoria over the IV's she received last week and the glimpse of health and possible appetite quickly dissapated. She continued to vomit every morning and her loss of appetite got to where she went a couple of days without anything passing her lips. Except, of course, for the few sips of liquid that we constantly have to remind her to drink in an effort to keep her hydrated in between trying to get her to take her pills and keep them down. Constant nagging, constant worry, constant suffering. The problems with her "line" taking backburner status because we simply have to get her healthier before we put her through another thing. Shelee has been in constant touch with the doctor's, more shuffling of meds.

In the meantime, the two week incubation period for this crazy virus that Parker, Shelee and I had reached an end and Matt became it's next victim. He got quaranteened to his upstairs bedroom. Shelee slept in COOKIE's room and COOKIE slept with me in an effort to keep the virus isolated to Matt, in one room. Constant Lysol spraying and even more diligent handwashing ensued. We passed his food and drink to him wearing masks. (Not for disguise but for self preservation although donning a disguise and taking a break sounds tempting!!!) ha!

The washing machine decided to give up, something that's simply not allowed in this house. Of course, the timing for something like this is never good! Thankfully, Matt has fixed it several times and had dragged it out to the backyard and taken it apart before he got sick. We were able to get the cute little part for it but now Matt was too ill to fix the darn thing. Sounds funny now but not at the time.

While COOKIE and Shelee were living at UCLA, Shelee got a toothache and had to go to the dentist one day. He met her at his office on his day off because he knew her circumstances. Of course, she needed a root canal but he packed her tooth as a "bandaid" until she could actually give him a couple of hours of her time to get it done. He told her it would last a few months and it has. Time is up. She had to go have a root canal a couple of days ago.

All of the above situations are small but they take on a life of their own when they hit all at once. Anything that takes us into another whole tunnel of thought and planning and the least little bit of strength seems extremely difficult and causes stress. Little "normal" bumps in the road seem literally insurmountable until we take a breath and small step back and figure out how to muddle through with as little time away from our main purpose.

On a very serious note, during all of this, a young lady that Shelee, Matt and COOKIE met while they were living at UCLA, took a very sudden turn for the worst. She was a beautiful 19 year old girl who was diagnosed with the same leukemia COOKIE had, A.L.L., at the age of 12. She went through treatment and was considered "cured" after 5 years. Afer five and a half years, she relapsed. Because of her age, they suggested a bone marrow transplant. While COOKIE was in UCLA for transplant, this young lady was there going through chemotherapy treatment, getting ready for her transplant. After COOKIE left, Shelee and Matt gave her Mom what was left of our parking passes and suggested to them to try to get COOKIE's room when they had their transplant because it was the "suite" on the transplant unit.

Shelee has kept updated through THEIR blog. She was within 7 days of finally being released to go home after having overcome several setbacks, when the tide suddenly turned and she was unable to recover from it. Her circumstances are very different from COOKIE's in all aspects but what binds them is THEIR fight. Their fight against the injustice of their disease and their fight for life. She passed away yesterday and it's saddened us all very deeply.

We turn our head back in COOKIE's direction and with more determination and more FIGHT, if that's possible, we go on. Thank GOD we have tomorrow and it's loaded with HOPE. We've been humbled, once again, and now we're ready to get on with this process and get this child well. The strength of the human spirit is beyond comprehension.

I shared this with you to open your minds to the world we personally live in. We have made it our "creed" to be grateful for what we have. We've struggled with everything that's in us to TRY to remember to be THANKFUL for every single moment we get to look into COOKIE's beautiful blue eyes and Parker's beautiful green eyes. They are our hope for the future and the happiness of our present day lives. We are not alone in this world of suffering and hope and disease and love but we can only live OUR lives and when we can, we try to give back to those around us.

Well, Matt is almost completely recovered and he fixed the washing machine last night. It's a bittersweet celebration, to be sure. :)

COOKIE went to UCLA yesterday and got a couple of really wonderful treatments by IV. They've determined that she is definitely suffering with some upper intestinal graph vs. host disease and are set on treating it accordingly. She's going back on a short regime of high doses of steroids, then tapering off a bit but still a much higher dose that she was on. This will increase her appetite and give her body just the boost it needs at this time to fight off the gvh. The new Prograph is so strong that they had to reduce her intake of that also. All of this will help to boost her low blood pressure, bring down her high pulse rate, get her kidneys working properly and increase her appetite. By the end of the week, she'll be eating the paint off of the walls, or at least, wanting to. This state of affairs couldn't come at a better time! We're going to Palm Desert to Aunt Shannon's house for Thanksgiving and COOKIE is probably actually going to EAT! With just one dose of steroid last night, she ate a couple of eggs, a few bites of popcorn and drank a whole juice box!!!! That's like watching her consume a ten course meal!!!

When Shelee and COOKIE went to UCLA yesterday, they ran into a 12 year old young man that had his transplant the day after COOKIE. Their treatment has been very similar and they see each other almost all the time when they both go to clinic. They hadn't seen each other for about 3 weeks since COOKIE has been off track but he was there yesterday. Speaking with his mom, he's been going through the exact same things as COOKIE. They look like brother and sister with the dark curly hair. They're both back in their wheelchairs and getting the exact same treatments and meds. We found that very comforting. COOKIE's recovery is taking longer than anticipated but it's still on track with what's expected. That's comforting to know.

Well, I'll close this with our very best wishes to all of you for a healthy and safe holiday. There's much to be thankful for in all of our lives, if for no other reason, than for knowing each other and being able to love one another.
HAPPY THANKSGIVING to you and your families!

With love,
Cookie, The Grandma