I'm not saying it gets better, it just gets different.

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.

Posted via email from MindiTheMagnificent

Too much in my head and heart, these days.

Hi, out there.  Been having a hard time getting myself to sit in front of this keyboard.

There has been much to say, but my ability to share has been lacking. I've been stuck in this really nasty head space. Trying to live each day in our reality and survive being out in yours. It is a painful experience. Staring into your eyes, seeing the desire for everything to be OK. Wondering if you are going to run screaming in the other direction if I open my mouth and talk about our experience and the realities of childhood cancer. I feel so gun shy. Wanting to purge myself out to you, knowing that is not the thing you want me to do. Wanting somewhere to "put" everything that races around my brain. Not ready, or able, to live peacefully with everything we have experienced in the last nearly two years. Knowing we still have tomorrow ahead of us, not knowing what it will bring. Feeling incredibly insecure about everything.

We started counseling in late December. Curtis and AnnMarie are seeing their counselors every two weeks and they are making baby steps. Things are much better around here. December was hard. The holidays have always been hard for me, though. Expectations. *shiver*

Gregory has had several visits to the ER for fevers. Continues to be immune compromised. His health is so complex. He had an eye exam and lung CT in December. His cataracts remain stable, his vision correction has worsened as has his astigmatism. His lung CT remains clear, yet his oxygen saturation has not improved. He had his first appointment with the endocrinologist. He will need growth hormone, but we are waiting until summer to really start that process.

He has been tapered down to 1/2 a mg/kg of Prednisone. He is now at 7mg of prednisone, every other day, with hydrocortisone on off pred days for his adenal insufficiency. This last weekend he had an evening of dry heaving with diarrhea. It landed us in the hospital for overnight IV fluids and IV Zofran. His gut has been sensitive all week with loose stools.  Just taking it easy, keeping him out of school and keeping a close eye on it. He did have IVIgG on Monday. Continuing to keep what immune system he does have, as strong as it can be. Luckily we have escaped any really nasty illnesses for him, so far, this season. *fingers crossed*

As twisted as this may sound, the things that keep me going are fellow childhood cancer families. Raising awareness, raising funds for childhood cancer research and offering support. These families are my circle of security. I don't feel I  need to excuse my lack of brain function. My need to be involved. There continues to be HARD news for fellow families. Relapse, illness, dying, death. Families struggling with PTSD.

There is no "end", no "done" with childhood cancer. Well, there is one. Death. I don't consider that a "done", though. Living with death is one of the hardest things to experience. Witnessing it. Over and over and over.

There is no sunshine in my words, today. Just a feeling of being constantly weighted down. I feel like there is an anvil on chains, strapped around my shoulders and hanging to my knees. Constantly keeping my shoulders bowed and my head turned towards the ground. Not knowing, from moment to moment, if Gregory is going to contract a common cold that will throw us back in the hospital. Not knowing if Gregory will be exposed to Chicken Pox. Not knowing if his GVH is going to flare and trigger weeks of trying to get back on top of it, again. It is really hard to see the light. The light that is Gregory living, today. I am still grieving. Trying to navigate the questions in a real, truthful way. I  have this wretched habit of speaking things as they are. I cannot gloss over the realities and bask in the beauty of Gregory still living. Selfish? Possibly. Real? Yes. I feel chained. Tied down. Held prisoner by his immune system. Yes, a small price to pay for his life. Still worthy of recognizing as a loss.

Meanwhile..... Did you know I'm raising funds for Childhood Cancer Research? Yes, I am. I am shaving my head with the 46 Mommas. Raising funds for St Baldrick's. While it is commonly said that we are raising funds to find a cure, I  don't see it as a cure. I am raising funds to for better treatments for our kiddos. Not my kiddo, his cancer treatment is done (hopefully). I am raising funds for YOUR kiddos, your kids kids. My greatest fear (well, one of several) for Gregory is a secondary cancer, such as AML, or Myelodysplastic Sydrome. Gregory's treatment was so intense that his is a real possibility. The late effects that our kids live with are enormous. Sterility is another big one. As is heart failure. The list goes on and on and on.

I think you can help me, help St Baldrick's fund Childhood Cancer Research. My fundraising page is at St Baldricks: Mindi Finch
No donation is too small or too big. St Baldrick's is the second largest funder of Childhood Cancer Research, second only to the government. Love this foundation, love, love, love. If you are interested in keeping up with the movers and the shakers of the Childhood Cancer world, please check out People Against Childhood Cancer (PAC2). This is where 46 Mommas began.

I wish I  had more to say, at least that I felt comfortable sharing. My heart and my head are all twisty. Holding each and every one of you in my heart, surrounded in light and cradled in love.

~Mindi
Momcologist

Posted via email from MindiTheMagnificent