Good gravy this is overdue.My writing head is still stuck in August, while my life whizzes into October. We spent quite a bit of October at HomeHome. We officially moved HomeHome in late August. I was suffering Shell Shock, PTSD, emotional release…….. For the 18 months prior, beginning with Gregory’s diagnosis, I had stuffed all my “stuff” in a corner. It was crammed in crevices and undercover. Kept hidden from the light of day, so I could survive each passing moment, whilst in the thick of it. We returned HomeHome to a house not even halfway complete in it’s renovation. I share the following not because I want sympathy or pity. Simply to get it down, out of my brain and tucked away for posterity. Like I’ve mentioned before, I had this crazy vision that Gregory and I would return HomeHome to a freshly renovated home. Ready to ease back into family life. HA! For much of August I struggled with being OK with what our living circumstances now are. Along with the crashing waves of processing what Gregory and I have been through since February of 2009. We have a rather small and poorly laid out nearly three bedroom home. We felt it necessary for all three kids to have their own room. Curtis is 11. Obviously needs his own space for a place to regroup and cool off. Asperger’s can really be a headache. AnnMarie is 8. Gregory is 5. Just a strange combination of needs for all three. We also wanted them each to have their own room for quarantine purposes. If one of them should come down with something contagious, we needed to be able to keep Gregory away from it as much as possible. So. Gregory’s room (which was my and Larry’s room) is finished. Fresh paint and new flooring. The rest of the house is 1/2 painted and the flooring needs to be laid. Daddy is sleeping in the living room on a mat and I am sleeping on Gregory’s floor. Strange. I know. For a large portion of August i was ANGRY! Mad, mad, mad. Desperately trying to get my head around our reality. In the time that has passed we have found our way. I tell you though, I DO NOT want to repeat that month. August is also the time of year where we start gearing up for Childhood Cancer Awareness Month in September. The 46 Mommas were getting ready to shave. We were all trying to figure out how to live together under the same roof. I was re-establishing myself in the community. Running into people, while out and about and trying to navigate the questions and responses. Trying to find a dialogue that respected where we are at and what the other person REALLY wanted to hear. The look in someone’s eyes that is desperately pleading with you…..”but, he’s OK. Right?”. It’s such a loaded question. Rather than go into all the details I answer with a “Yes, his cancer is gone. He is still on a dozen different medications and immune compromised. He also has a laundry list of treatment related side effects. For now, though, he’s doing well.” I wrote the above about ten days ago. I’ve been trying to decide whether or not to share it. Wondering who’s feeling I could possibly hurt and what was my intent for sharing our living arrangements. *shrug* I don’t have an answer, but I do feel the need to be honest about this experience and document it for posterity. So. There it is. In the last two weeks, Gregory has navigated a head cold and received immunizations. Since he has a new immune system, he has to be re-immunized. We started the process in August and he had his boosters, along with a flu shot, this week. His head cold that he had was very kind to him. He did pop a fever and we made the necessary trip to the ER. Labs, cultures, nasal swabs, x-ray, urine sample. He looked relatively good, his labs were good and his x-ray was clear. WE WERE NOT ADMITTED TO THE UNIT! For the first time since diagnosis. Can you believe it? He managed to get through the head cold with minimal symptoms. It was a light cold, Curtis, AnnMarie and I all had it, too, and it was about a 3 day course. *whew* When he received his immunizations this past Monday? That was another story. He had four pokes, two in each leg. He had tremendous leg pain and would not even bare weight on his legs. This lasted until Wednesday afternoon. Monday night he popped a fever and it was back to the ER. He received IV fluids, a stress dose of Hydrocortisone and an antibiotic. Labs, cultures, urine sample. Once again (woo hoo!) we were NOT admitted to the unit. All of his tests are remaining negative. We are finding our way and taking it one step at a time. He is still immune compromised and has a fragile system. Over all, he is doing really well. Keeping my fingers crossed for cold and flu season. One thing I need to remember to do….. keep up with the dishes and the laundry. These last two ER visits were a glaring reminder that although I could leave a sink full of dishes and a pile of laundry, I do not like leaving that to Larry. My problem, I know. I also need to keep a bag packed. Crap. I really hate seeing that packed bag in the corner. Hate it. Just another reminder that we are still on a long haul. Many of you have already heard, in case you hadn’t……. I am officially a 46 Momma for our 2011 Campaign. I will stand with 45 Momcologist’s, in a national venue and shave my head. While raising awareness for Childhood Cancer and raising funds for desperately needed Childhood Cancer Research. This time, next year, I will be LOUD, PROUD and BALD! We are hard at work welcoming the new team and coordinating The Shave for 2011. This is a St Baldrick’s event. If you are a mom of a cancer kiddo and want to join us, click here and fill out the recruitment form. If you are a momcologist and unable to travel, a non-momcologist who wants to shave, or you think you might be able to lend us a hand, drop a line to firstname.lastname@example.org. We are helping to set up local/regional shave events for anyone who want to help the 46 Mommas reach our $1 Million goal. This is going to be an amazing experience. Can’t tell you how honored I am to be a part of this. I’ve been reading like crazy, learning, advocating, trying to find my voice. I’ve found some great articles: People Against Childhood Cancer (PAC2) is a group of folks committed to educating, raising awareness and funding childhood cancer research. Here is a fantastic report on the Childhood Cancer Caucus held this past September. It’s long, but it is soooooo good. My take home quote:
“Curing childhood cancer is the equivalent of curing breast cancer in terms of productive life years saved” ~ Dr. Eugenie Kleinerman – Head, Division of Pediatrics, M. D. Anderson Cancer Center
The CBS Sunday Morning Show recently did a piece about Bone Marrow/Cord Blood donation. The kiddo that they featured is a JMML patient. Check this out.Alliance For Childhood Cancer Yes, advocacy and awareness courses through my veins. Always has. You may ask: Why? Those before you haven’t gotten very far.
I beg to differ with that opinion. I am not out to obtain a splashy, big change. Slow and steady wins the race. Someone, somewhere, whether it’s a fresh faced Pediatric Oncology Research, a child in elementary school with an interest in science or a researcher who has been at it for decades….. knows something and doesn’t know it. How can that idea grow, flourish and come to light if we aren’t ready to lend the hand that can make that happen. By partnering with PAC2, St Baldrick’s, working together with Alex’s Lemonade Stand, The American Childhood Cancer Organization, CureSearch, local hospitals and research centers…… we WILL slowly and steadily win the race. Now back to our regularly scheduled program. We are all adjusting to living together. Stumbling, anxious, laughing and loving along the way. With some yelling, screaming, tantrums and frustrations thrown in for flair. I think we found a school for Gregory. It’s called The Plum Tree and is absolutely divine. He will be attending two afternoons a week and it is a perfect fit for him. Excited to watch him grow and explore the world. Still trying to learn how to live with the fact that we have a child with a chronic health condition. Especially since it’s not glaringly obvious. More later. I’m hopeful that my writer’s block has been relieved and I can get back down to writing regularly. I’ve really missed it and missed out on many things that I would have liked to share. Sending love and light to everyone of you. Holding you in my heart, cradled in comfort. ~Mindi