So. This is the point where I should be doing a post-clinic visit re-cap. Just have not been feeling it, lately. It seems like I spout the same information, use the same disclaimers (over and over and over) and continue to cross my fingers.
Except with this clinic visit, I had a moment.
Labs were drawn, we headed over for his Pulmonary Function Test (PFT) then returned to clinic for a visit with the doc and lab results. His blood draw was flawless. The PFT? Well…. they don’t usually do this testing until kids are six years of age. Gregory will be six the end of June. I forgot that while he is chronologically six, he is physiologically around four. His little mouth was not big enough to do the full testing. He did a test where you breathe normally through a mouth piece. Then he received a Nebullizer treatment. Followed with another round of breathing. We won’t have results until sometime this week, but I really don’t think it will show much. Also? Wouldn’t you know it that he was sat’ing at 99. Turkey. The guy who did his testing was AWESOMESAUCE. He was absolutely enthralled with Gregory and they had a blast together.
Then came the labs. This was my moment. I took a look at the labs, everything looks great. Right along with Gregory’s “normal”. This is when I realized….. 28 more days. We have 28 more days to breathe easy, thank our lucky stars and revel in his existence. I looked at the labs, received my confirmation that all was well within his little body then put those worries away. Tucked them on their shelf to wait for 28 days. First time I’ve been able to joyfully accept what is and then carry on.
He is down to 1mg of Prednisone every other day. We taper to 0.5mg every other day on Thursday, for one week. Then no Prednisone. One year, eleven months of Prednisone. I’m not saying a huge Farewell or celebrating it’s departure. The reality of Allogeneic Bone Marrow Transplant is that GVHD will always be a shadow. He may need Prednisone, from time to time, for the rest of his life. He is still on Sirolimus, which is his other immune suppression drug. We will remain at zero Prednisone for a month, as long as he does not have any major GVHD flares, we will then begin to taper the Sirolimus. Keeping my fingers crossed that he will have an uneventful summer and be OFF of his immune suppression meds, soon. Crossing fingers, but prepared for anything.
In the last month he has had a few bouts with severe stomach aches and a couple days of diarrhea. I’ll take a day here and there. Yesterday he did start with a red, flaky area around his nose. He has also been itchy. Not in one place. Just kind of itchy in different places, through out the day. Could this be GVH? Could be. *shrug* I have a love/hate relationship with GVH. It keeps his disease at bay, but causes random symptoms that are not easy to pinpoint. Which keeps my hyper-vigilance in high gear.
The Eldest (Curtis) & The Artist (AnnMarie) spent three days/two nights this last week at their school Camp Out. Once again, I was not able to attend. I have yet to find out how much fun they really had. They are of an age where coaxing information out of them is challenging. The pictures that others took are starting to come through and it looks like they all had a really great time, while learning about themselves.
Here’s one of The Eldest. Cannot believe how much he has grown up in the last two years. He’s not a little kid, anymore…..He’s also at that age (12) where getting him in front of a camera is IMPOSSIBLE!
It’s Middle School for him this fall. Where does the time go? (That’s rhetorical. Duh!)
We are all set for Gregory’s two year Post-Transplant follow-up. We leave for Seattle on Sunday, June 19. We will be spending the week in Seattle, with appointments all week. I am looking forward to seeing everyone and watching their expressions as they see how far he has come. While there is no guarantee for tomorrow, TODAY he is fantastic.
Links I think YOU should see:
That’s about it, for now. 28 more days of Life. 824 days since diagnosis.
With love, love, love…..
*I NEED YOUR HELP. Won’t you help me fund a cure? Do it now. Make a donation to fund Childhood Cancer Research.
Childhood Cancers are the #1 disease killer of children under the age of 15 — more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
“Curing childhood cancer is the equivalent of curing breast cancer in terms of productive life years saved.” ~ Dr. Eugenie Kleinerman – Head, Division of Pediatrics, Children’s Cancer Hospital at MD Anderson Cancer Center