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