It’s been ages since I have done a proper update on Gregory. Shall we begin??
To say that Gregory has been thriving would be a severe understatement. He started first grade this past September and has not looked back. His state of heal continues to flourish, while I still hold my breath.
He had his first quarterly oncology appointment in September. We met with his endocrinologist and discussed what was next in terms of his adrenal function. His oncology appointment was uneventful. Which is a fabulous thing. Through endocrinology we scheduled an ACTH stimulation test to check the function of his adrenal glands. He had been tolerating daily living without hydrocortisone supplementation, yet we were not sure how his adrenals would function when put under stress. ie, illness or injury
We went in on Monday, October 15 and he was given a drug through his port that would replicate a stress situation. Prior to, a blood sample was drawn to measure his ‘normal’ level. At the thirty minute mark, another sample was drawn to determine his response. Results came in the next day and they were down right perfect. Baseline was 4 and post infusion it went up to 21. Perfect response. Which indicated that his adrenal glands had returned to fully functional. A-may-zing. Seriously.
Also? This was THE LAST time that Gregory would be accessed through the port in his chest. The last.
We had the OK from oncology to get that puppy out. By a stroke of coincidence, there was an opening the morning of Monday, October 22nd. If you had not already known by now, Gregory is now port free. Completely device free, actually. Since he has a paradoxical reaction to Versed, they simply sent him off to dreamland via gas, then placed an IV in his hand for the procedure. It did not take long and Dr McCarthy was able to get the line out in it’s entirety. She did a fabulous job of closing the incision and even excised the scar from the original placement before closing it up. It is healing beautifully and hopefully he will only have a slim, roughly 1 1/2″ line of a scar. Thank you to the GVHD gods that there has been zero evidence of GVHD.
He stayed home on Tuesday for pain management and was off to school on Wednesday with his port in a container to show his classmates. Once again, they all thought it was pretty slick.
We have been chipping away at getting his re-immunizations finished. He only has three remaining, yet two of them I am quite scarred of how his body will react. On Friday, November 16, he will receive Varicella, MMR and Menactra. Yep. Two live virus vaccines. Holy crap. Honestly did not think we would get to give these a try. Crossing my fingers that he will have a mild reaction and bowing to all that is sacred that they actually take and give him sufficient coverage for immunity. Please, please, please……..
You are going to love this one. A few weeks back, he lost BOTH of his top front teeth. On time. Developmentally on time. We are still not sure how his adult teeth will look when they fully arrive, so we are monitoring them like crazy. We do know that he does not have enough room and the neighbors to his lost baby teeth will be removed by the dentist this coming Monday the 12th.
|Too stinkin’ cute, if you ask me.|
It has been fascinating to watch Gregory ‘reclaim’ his body. It’s not conscience and so very subtle, but there has been a difference in him. A quiet pride, if you will. He is taking on a bit of age appropriate independence, but it has such an air of confidence. As if he is wearing a huge badge that exclaims: “I GOT THIS!” Which today, in this moment, he totally does.
Yesterday when I pick him up he had a bit of laryngitis. This combined with his demeanor let me know that he was working on something. He was uber compliant and lovingly did everything I has asked him to do. Not 100% completely normal behavior! He started to develop a cough and close to bedtime it took on that barking sound that comes with croup. My sensors went into high-gear. Thermometer, Vicks and rest. Thankfully he slept soundly through the night, stayed home today and it did not worsen. In fact, he will be going to school tomorrow. These days, his body is showing us that he is OK. His spirit is showing us that he is fabulous.
I take each new development with cautious optimism. Preparing for the worst and expecting the best. I made the phone call today to oncology to find out what his ‘illness protocol’ is, now that he does not have a port. The return phone call was both a surprise and an expected response. The verdict?
TREAT HIM LIKE THE OTHER OFFSPRING.
Meaning, if he has an illness, treat it from home. Which means he can have Tylenol again! If I am concerned about an illness, take him to his PEDIATRICIAN. If there is something after-hours and requires an ER visit, I don’t have to call oncology first. Yep. We just cut a huge slice out of his medical routine. This will require a mental adjustment from me. The first time we get to test this, I will panic a bit. So will his pediatricians office, but I am well prepared for that scenario. His last round of immunizations was kind of a mess and I learned a lesson. I will forever be Gregory’s Living, Walking, Talking Medical Record. *sigh* I will tell you that he is excited to have an excuse to visit our new Pediatric ER. It is due to open soon and the crazy kid wants to try it out. ‘Cause, “Mommy, won’t it be so much better and easier?”
In December he has a full eye exam, hearing test and oncology. Possibly another round of immunizations, too. I feel like there is something else, too, but I can’t seem to put my finger on what it could be. Maybe it’s nothing. I only think it’s something because it doesn’t feel like there is enough.
What did I tell you. He is doing so well, today. I am taking it with such gladness, awe and wonderment.
Today? Gregory is grrrrrrrreat!