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Coming to you LIVE from Spokane, Washington........ It's Chez Sacred Heart!

I tell you, post Stem Cell Transplant (Bone Marrow Transplant) is such a delicate dance. Not the kind where you gently shuffle your feet, but the kind that has seriously complicated steps, with stretches of simple swaying, bridges of intense two step, accompanied by music that has never been written or heard before. Music written solely by Gregory's body, with no indication of tempo, key, transitions. Not until they are actually played and hit your eardrum.

Wednesday he woke at 4AM with serious belly issues. Moaning and groaning. No heaving. Some Zofran and all was well. Until 9AM where he complained of a big sore throat. Wednesday night his temp started to go up. By 8:00ish it hit the not-so-magical number of 100.5. Phone call to oncologist. Made the requisite trip to the ER for blood cultures, stress dose of hydrocortisone and IV antibiotics. When we got there his temp was 101.1. He was dosed with Tylenol, an hour later, his temp was 101.4. His temp went up through Tylenol. He also did not look to swell. That droopy eyed, "I don't feel well." look. We were admitted for the night. He crashed in the ER at around midnight, we were settled in our room in the unit at 1:30ish. From 2:00 on, the poor kid woke every 30-60 minutes with inconsolable sobbing. He wasn't able to tell me why, either. It did not sound like a hurting cry. It sounded like his high-dose steroid emotional cry. Sad and filled with grief. Chest racking sobs, that I could do nothing for, except be with him and wait it out. Every 30-60 minutes. Little dude finally woke up this morning and told me that he was crying because his throat hurt. Yet, his throat looks good. What we can see, that is.

Doc decided he should be observed through Thursday and Thursday night.

So. Here I sit. He is sleeping soundly in the bed and I am tap-tap-taping away at the couch/bed. (We are so spoiled at this hospital.)

This is our first real "sick" admit since transplant. 20 months ago. He's had a few admits for blood infections (septic), an admit to change his Hickman to a port, 8 weeks last winter for cGVH. A 14 hour stay a few weeks back for IV Zofran and IV fluids ( he had some stomach bug that wreaked havoc on his gut. I am NOT a fan of dry heaving) Several ER visits for fevers that did not result in admits.

Gregory has done VERY well through transplant. It is so much easier to recognize that in hind sight. Experiencing it is another story.

The thing that really gets to me is the constant vigilance. Watching him like a hawk for any signs of infection, any signs of late effects, remembering to keep the things he does have issues with monitored (cataracts, lung function, gvh, osteopenia). Then there is the medications and overnight fluids. With the vigilance come keeping an eye out for sickness around us. Any inkling of something going around and my awareness gets ramped up a couple notches. I truly believe that my vigilance has kept him as "healthy" as he has been these last 20 months. During our intake to the unit last night, the charge nurse asked the routine question "Has Gregory ever had MRSA or VRE?" My response has always been a very joyful "NO!" She look at me and asked "How did you get through transplant without either?" There was another nurse in the room who looked at me and said, "But he's had C-Diff, right?". Once more a very enthusiastic "NOPE!" They both were baffled that Gregory had not contracted any of these during his Odyssey.

This got me to thinking that Gregory has had a very "Middle of the road" transplant experience. Plenty of heavy duty events, with plenty of things we just have not experienced. When it comes to BMT, the whole thing is one huge Crap Shoot. Forever. For the rest of Gregory's life.

Then reality likes to slap me in the face. Another JMML kiddo died this week. Don't know most of the story, suffice it to say, we have lost another little soul. Another JMML kiddo was admitted this week for his second bone marrow transplant. Yet another JMML kiddo has evidence of disease with a very complicated treatment history that I  have yet to read. The reason this is so heart breaking to me, is simply due to the numbers game. 24-50 cases of JMML are diagnosed, in the US, every year. Those 25-50 cases have a wide range of genetic markers. Wide ranges of presentation, ages of the kiddos and treatment response. Treating JMML is far from "A sure thing". Continued research in Stem Cell Transplant will help to ease this "after" life that ALL transplant patients live with.

Then........ I'm reminded what a PRIVILEGE it is/was for us to be treated at Seattle Cancer Care Alliance, the patient care side of the Fred Hutchinson Cancer Research Center and Seattle Children's. This is where bone marrow transplants were pioneered. This is where the premier Long Term Follow Up program is for transplant patients. This is where the cGVH Gurus are grown. THIS is our treatment center, simply due to location. The respect, honor and love that I have for these centers and their employees knows no bounds. Their work, over the last 40 years, has allowed Gregory to have the quality of LIFE that he does have. Yes, some of it is just plain luck. I still am filled with gratitude to be able to call these places Home.

Part of all these mushy thoughts began on Tuesday. Larry came home from work and asked Gregory what kind of cake and ice cream he would like for Friday. Out of Larry's line of sight, I'm giving him this "What are you talking about? We have nothing to celebrate?" look. Thinking he's REALLY lost his marbles. Then it dawns on me.

Daddy remembered. Daddy wants to celebrate and honor. Daddy wants to love.

Friday, February 25, 2011 is Gregory's second Diagnosiversary.

Provided we get out of the Grey Bar Hotel tomorrow, of which I'm certain we will *crosses fingers*, we will be celebrating two years of survivorship. I wallowed in sadness last year. Deeply wallowed. I will not be doing that this year. While it won't be all "Balloons, sparklers and whistles", it will have little to no sadness. We will celebrate being together and living this really difficult and beautiful thing called LIFE.

With a Schizophrenic Heart,
~Mindi
Momcologist

*Won't you help me fund a cure? Do it now. Make a donation to fund Childhood Cancer Research. We need more transplant patients like Gregory.

www.46mommas.com/mindifinch

Awareness=>Funding=>Research=>Cures

It's THAT simple.

Comments

( 2 comments — Leave a comment )
(Anonymous)
Feb. 25th, 2011 06:31 pm (UTC)
Fingers crossed
Hoping the you and Gregory get to have that cake today. I'm so glad that your husband remembered to celebrate. In my cancer-momma mind each milestone deserves a little recognition. It helps makes the roller coaster ride more palatable.

I read back through your last few posts. I wish I had remembered to check your blog last fall. (Karla's facebook post today brought me here today). Sending you a big momma hug and a little acknowledgement that the post-treatment journey can be equally as hard as battle through treatment.....it just isn't as obvious to the outside world.

Hang in there and keep writing. It's obvious that words help you....and in turn they help others.

Hugs,
Kelly Forebaugh
(Anonymous)
Feb. 25th, 2011 11:38 pm (UTC)
My love and respect for you, Gregory, Curtis, Anne Marie and Larry knows no bounds. I am deeply humbled to have read these words..your words. Celebrating you today. This day. This glorious day. This reminder day that you are not 'there' any longer. This new day. Celebrating you all days as we continue to walk together...
( 2 comments — Leave a comment )

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