The log jam has reached capacity, the dam has cracked. Which has, once again, led me to scurry to the keyboard to pound out words.
We had encounter today. One that I have been fearing, yet knew it was bound to happen. Without taking too much time and energy to set up the scene, after having a bit of a melt down, Gregory was on the receiving end of, “Yes, you have been through a lot. Yet you are now six. You need to be doing what other six year olds are expected to do. Work.”
I understand where this came from. It doesn’t make my heart hurt any less. Yes, chronologically he is six. Nearly seven. Those numbers mean jack-crap for his development. Now, please do not go off half cocked over this encounter. There is no blame or anger to be expressed. It is what it is and it is a reality of how misunderstood his treatment and life after treatment is. This is the perfect example of what I have been trying to prepare myself for as we get ready for him to enter the first grade and public school. There is an element of ‘tough love’ that is going to come with this next phase of his life and learning. I know that he will not receive Gregory Tailored care and education. As my dear friend pointed out, those of us that are in the thick of this life post a diagnosis of childhood cancer, we don’t know what tomorrow will bring. We don’t know if Gregory will survive to the age of 35, 19 or even 10. The fact that he is here now is an unexpected outcome. I also do not know what it feels like to be living in Gregory’s body on a daily basis. Which can change from moment to moment.
Over the last few months, I’ve been preparing myself and Gregory’s elementary school for his entry this fall. I have no idea what this is going to do to his body and how he will cope. He still has a dysfunctional immune system. He is not able to create antibodies that recognize illnesses and mount a defense when his body encounters an illness. Any illness. One of the scariest things is chicken pox. This past late fall/winter we have been avoiding chicken pox like crazy. There has been a truckload of it in our community. Should Gregory contract chicken pox, it is truly life threatening. Also? He is not able to develop immunity to it. Which means he can catch it again and again. I did not keep track, but he missed 5-6 weeks of school this year, avoiding chicken pox. Which is our only course of action with any infectious diseases. He is currently receiving donor anti-bodies (IVIgG) every four weeks, While this gives him good coverage, it is not complete. He is now 2.5 years post transplant and there is no way of knowing if this is temporary or a permanent state of his immune system. Only time will tell. So, when it comes to thinking about his education and what it might look like for him next year???? A school with 400 first through sixth graders, a full day of school, the excess noise in the classroom (with his high frequency hearing loss) and the toll this will take on his not fully functional little body? Oh yeah… he’s still growing and developing, at the same time (we hope), too! That is a lot for one little body to process.
And then….. he’s been having gut GVH symptoms and a faint spidery rash on his cheeks, which is probably also GVH. His gut GVH symptoms manifest with nausea, frequent loose stools and his G tube site has been painful. When I think about what it must feel like to have a constantly irritated gut, I just cannot wrap my head around it. As long as he tolerates his symptoms and they are manageable, there is no treatment. The only treatment is prednisone and immune suppressants. Those are not even considered until his symptoms are fairly severe.
Do you know how exhausting this life with Survivorship is? Holy Hannah. We are also gearing up for Gregory’s annual long-term follow up (LTFU) appointments in Seattle. He will have his hearing re-tested next week, dental exam and panoramic x-ray the end of March, an eye exam to check his cataracts and we will be looking at his CD19 & CD4 (anti-body) levels to determine if we will be holding his IVIgG for the recommended 8 weeks prior to LTFU. Donor IgG has a ‘life’ of about 8 weeks in the body. In order to get an accurate status of Gregory’s antibodies, we need to hold any infusions for 8 weeks prior to testing. Quite frankly, I do not think his immune response has changed since his last LTFU in June of ’11. Holding his IVIgG only puts him at risk of getting sick. Which is exactly what happened during our last LTFU visit.
Among all of this chaos, we are preparing for a trip to New York City in late April. We will be meeting Gregory’s donor. There are many details that go along with this that I am not at liberty to publicly disclose. Suffice it to say, we have known about this since November and I am just now mentioning it. I will share all the details when the time is right. (See how I snuck that exciting piece of information deep in a whiny post!)
What this all boils down to: Every stinkin’ day of Gregory’s life is so complicated. Every stinkin’ day is amazing. Every stinkin’ day is exhausting and emotion laden. Not every moment, but there is a heaviness to every day. Be gentle with him. The fact that he is still around, three years after diagnosis, is a shining light. The fact that we are not completely broken is miraculous. The fact that we have LIFE is never lost on me. Ever.
Mindi The Magnificent
ETA: Just to be crystal clear. I am acutely aware of the fact that we are bittersweetly BLESSED to be dealing with these issues. Every time I post a ‘bitch session’ I cringe. Knowing full well that I have friends who’s children have died and they are reading my words. I never forget.