I have a few hours to myself today. Decided to try and purge this head of mine. Spreading the burden, if you will.First things first: Gregory is doing quite well. We’ve had 3 or 4 ER visits with no admits. About 10 days ago, he did come down with a wet cough and spiked a fever. Come to find out he has Parainfluenza Type II. AKA: Croup. He spiked a couple fevers, cough progressed, a smattering of nose juice. A five day course of Zithromax. A drop in appetite. To date he’s lost one kilo. 2.2 pounds. Which is 6% of his body weight. His appetite took a huge hit, supplemental night time feeds are back for a few days. He’s not been in school. I’d like him to be a little stronger before we expose him to catching something else, on top of this. He’s improving, slowly. It’s a very long process for his little body. He’s been enjoying school and all that comes with being around “normal” kids. I absolutely adore the school. Too bad I’M not pre-school age! December is his 18 month post transplantiversary. Which means his “every six months” appointments are now. Next week he has an eye exam to take a look at the progression of his cataracts. He also has a High Resolution CT of his lungs to look for signs of Lung GVH. His oxygen saturation is still low. We were able to get him in to see an endocrinologist, last week. We talked about Growth Hormone and what Gregory’s needs might be. As it stands now, it’s too hard to tell the urgency. Not only will his transplant treatment effect his growth, but his sustained use of steroids stalls his growth. He is currently 14k, about 30 pounds, and is on 9mg of prednisone, every other day. Which computes out to five times his physiological dose. Crazy to think that not too long ago, he was on 30mg every day. We talked about his bone age. At Gregory’s one year follow up a bone age x-ray was taken and Gregory’s bone age was 3yrs 3months, just shy of his fifth birthday. What this means is that he literally has “room to grow”. Often the bones can age beyond the chronological age, which means there is less time/room for growth. Which gives us some wiggle room in terms of Growth Hormone Treatment timelines. I’m still on the fence about using them. Only time will reveal what my feelings will be. Daddy’s not too terribly tall at 5’4″, so Gregory’s lack of height? *shrug* We have plans to evaluate again in July, post Gregory’s annual follow up in Seattle. As a side note: I absolutely LOVE his endocrinologist. Dr K. Also discovered that he has a child/children at Gregory’s school, in the morning program. Cool, huh? One of Gregory’s oncologists and his endocrinologist with kids at his school. Yes, Spokane is THAT small. We have had two small victories. Not long ago, Gregory graduated to every three week appointments. THEN, he graduated to every FOUR week appointments. Pretty big deal, except with cold/flu season I know we will be there in between visits. Which has already proven true. There has been a snafu in his re-immunizations and his IgG. When we received his new immunization schedule they were in the process of changing the schedule. Also, there was a note about his NOT receiving IgG unless his level was below 400 AND he was showing signs of infection. He has continued to receive IgG when is level is below 400, regardless of his state of infection. Which has been about ever 6-8 weeks. On top of that, he is not to receive IgG for two months, prior to receiving immunizations. (IgG is part of your immune system. It’s been referred to as The Immune System Highway. Helps to get those cells where they need to be. Gregory is FAR from normal range.) His local Oncologist feels he needs to be kept above 400 regardless of his state of infection. Which I’m totally GREAT with. It’s his immunizations that I’m concerned about. Since he has been receiving IgG through his immunizations, there is a chance that they are null and void and we will need to start over again. Ugh! Anxiously awaiting a call from Seattle, either way. He is due for his third round of shots in December. It’s complicated. I’ve mentioned this numerous times over the past several weeks. Childhood cancer is the “gift” that keeps on giving. The ramifications of this experience do not show their heads all at once. Bits and pieces continue to show up, daily. Currently it’s hitting the sibs, something fierce. AnnMarie is feeling all kinds of insecure. She is having nightmares about Gregory and I moving away forever and not telling her where we are going. she wakes up hysterical and sobbing. She is no longer able to sleep over at a friend’s house. She falls apart if Gregory and I need to head to the ER. Added to her insecurity is Curtis and his anger. The kid is so angry. AnnMarie is his target. So am I. We started counseling, but it’s a slow process. We had school conferences for The Big Ones and I learned so much about Curtis. Day to day, his schooling is a roller coaster. Yet academically he is flourishing. If he continues as he has, he will qualify for Honors Classes next year in middle school. Not that I think he’s not smart enough, I know he is brilliant. I’m just amazed that he is able to turn it into something that is measurable by school district guidelines. Not too sure hoe I feel about placing him in honors classes. He needs the challenge of honors classes, yet I don’t want to set him up for less than a successful first year in middle school. He will have enough challenges, just adjusting to a new routine, without the pressures of advanced courses. Yet, if he is board stiff with standard classes, we could be in trouble. We have time to think this over and figure it out.
AnnMarie is doing really well, too. She is cut from an entirely different cloth. That child is all about service. She gives from the very depths of her heart and doesn’t ask for anything in return. She will be helping out in the Developmentally Impaired classrooms, assisting the kids in their reading. While this is great for her, I worry that she will be giving too much of herself and not keeping enough to sustain her spirit. I did discuss this with her teacher and we will be keeping an eye on her needs. Myself. There’s not much that I want to share to publicly. I am surviving. I’m tired of it, though. I barely have a finger grasp on each day. Keeping up with everything and trying to remember to give The OffSpring what they need. I had a conversation with the school counselor and she stated that I needed to show my love for Curtis and AnnMarie, five times, what I normally would. They need to feel loved. My immediate thought was….. I can barely provide 100%, how do I find 500%. I am taking baby steps. Itty bitty, teeny tiny baby steps. If I could get into the habit of writing, more frequently, it would help. Yet these are struggles that are entirely different than Gregory’s state of health. These are emotions, reactions and experiences that are results of the trauma our family has been through. They are perceptions from MY eyes and my heart. I am the only one inside my brain, listening to my heart. No matter what I share with friends, talk with the counselor about or put down in these words, it’s not the whole story. It’s only bits and pieces that are crowding out, at that particular time.
The financial part is probably the hardest. We are no longer a family of two incomes. While I can’t and won’t go back to work, another income is desperately needed. Add the holiday season and a couple of OffSpring birthdays and we are toast. Struggling.
The things that were broken before diagnosis are still there, too. Waiting. Long neglected and needing to be addressed. While many things really don’t matter, there are basics that need attention and I just don’t know how to address them and fix them. Or I do and I’m just too stinkin’ scared to bring them out, into the light.
Instead I fling myself into things that I have control over. Invest myself in the lives of other families. Trying to be available to help others. I will always be a part of this Childhood Cancer community. I just want to find a balance. Yet, I don’t think there is an easy balance. There are some families that just grab you by the heart strings and reel you in. Over the last several weeks, we have had several deaths. Children and their families that are very near and dear to me. Cameron, a JMML kiddo. Ryan, a post transplant spirit, who’s Mama is a soul sister. Max. The Mighty Max. Who’s Momma is a 46 Momma. Anniversaries of kiddo’s death. Relapses, evidence of disease, illnesses. Small victories and older kiddos making their own impact in this world. I am vested. These are my family members, my peeps. I cannot walk away. I cannot NOT be a presence. I need to work on my own home, though. Diligently, with love. Trying to. Every day. Meanwhile, the work with 2011 46 Mommas continues. The 2010 Mommas are still fundraising. Through the end of 2010. If any of you out there are in a charitable place, please remember these Mommas. Your holiday gift giving dollars are precious and can make an impact on funding a cure for Childhood Cancer and better treatments. Donations can be made here. Just click on the ‘Donate Now” button.
Awareness=>Funding=>Research=>Cures That’s it, for now. Not all of it, but a good start. ’til later. Gotta jet.
~Momcologist Amazing that this is the same kid. THIS is Prednisone.