April 16, 2015 changed this little man's world forever.
After weeks of being asked "how can I help" and "what do you need," which I politely declined, it has occurred to me that Marshall's story is one that deserves to be heard and needs to be told. At eight years old, he struggled to get out of his hospital bed today and I find myself in a position to give him the voice he needs.
To know Marshall is to love him. He touches the heart of everyone he meets. Despite living through more trauma, neglect and disappointment before the age of three than most people recognize in a lifetime, he never ceases to smile. He was moved from foster homes to residential treatment centers through the age of five and still kept a brave face. Many children might be broken of spirit, but not Marshall -- it is amazing.
I was seeking to enter the foster parenting program with the eventual goal of adoption, in some distant future. However, when I met Marshall in September 2011, there was no turning back. I was hooked and I sought adoptive placement. The adoption system in Texas is no picnic for a single guy, but I found support from places I will never be able to thank enough and in July 2012, I became a father to the most beautiful child in all the world. Every parent says that, I know, but then you know what I mean when I say this; it's truly spiritual.
A few years later, and Marshall has proven himself to be extraordinarily resilient. His chronic ear infections that left him with mild hearing loss and forced removal of his adenoids -- fixed. His clinical blindness that left him unable to learn or communicate effectively -- eyeglasses corrected to nearly 20/20. His borderline functioning IQ has increased nearly 50% and can now be described as "normal." He's thrown out the first pitch at a regional baseball game and ridden a sheep in age old "mutton busting" tradition of the local rodeo. He has even been caught kissing a local school girl. The innocence of the young! He remains happy and attached to his forever family, near and far. A truly magical experience, which has been followed by so many wonderful people.
You expect this story to continue. Like all inspirational stories about kids, adversity and perseverance, it has to continue, right? Unfortunately, Marshall began having migraine like headaches on March 19th and a month long ordeal that brought us to today. He was diagnosed with Hydrocephalus, brought on by Craniopharyngioma, which is a rare form of brain cancer that affects 2 in every 100,000 children in the world today. He has apparently been afflicted with this condition since birth, or very near to it, and due to slow growth has only shown symptoms now. This isn't fair -- why this child?
While he is still in the local Children's Hospital after 13 days and likely to remain there another week or more, the real challenges will begin upon his discharge. The surgery was considered generally successful, but he is still showing clear indications of Hypopituitarism, a condition which will likely affect the rest of his life.
We are a reasonable middle class family (son, dad, grandma and uncle) who work and go to homeowners association meetings, but I'm concerned about his ability to keep up with school and, in his eight year old way, so is he. There are going to be deficits in his function and doctor visits back-to-back with medications beyond what anyone would expect. I can manage his healthcare needs. I'm a parent who will give anything up to make sure he is happy and healthy. Who wouldn't? However, he is going to need specialized care during the summer and increased educational needs beyond what the school can provide; very distressing.
For this reason, I've opened this funding opportunity to allow friends, family and all other interested parties to share in his story and contribute to his success. He is 8 and wants nothing more than to stay in school, play outside and someday "build things." Without prompting, he expresses concern about being able to build things without cutting trees and hurting the environment. It makes me tear up to think about his empathy and kindness in a life that has been less than generous to him so far. I am so proud of him and I just want him to realize his dreams. Personal care and tutoring over the next few years could assure this. The goal is set a bit low, I understand; however, it will cover one full year and anything funded over the goal will go towards further months (or years) of supportive education and care.
We have all been blessed with Marshall in the world. Please help provide him the best life can offer so he'll continue to brighten our days and nights. Feel free to send encouraging notes and request updates on his condition. This is a long road but we'll walk it together.
Look at how close we are to the goal -- truly amazing! Thanks to all those that have donated. Almost there! If we pass over the finish line, GoFundMe will celebrate with an oversized check (think like those old publishers clearance house commercials). Cheesy perhaps, but Marshall will love it! Excess donations will go to a fun summer activity for Marshall, perhaps for his birthday coming up in late August.
Alright, so it's been another week and we've got mixed news. We've just dropped the daily pill count to 15 as one of them is no longer necessary. Yay! Another may drop off in the next month and less medication is definitely good news in my book.
Marshall has done 2 days of school all the way through and will finish out the year that way if all goes well. It's only 4 more days but he is very proud of being able to do it. PE class and recess have to be skipped. He gets nap and library time instead.
Unfortunately, he is still gaining weight and this is starting to become worrisome. He is no longer on massive steroid doses and he is eating more appropriately. His physical activity is limited but it's certainly more than lying around in the hospital so this doesn't make a lot of sense. Those that have been following along know his DDAVP dosage is very high though and I am starting to wonder if it is too high for his current needs. Only the endocrinologist can make this determination but we will be asking next week. If he is taking more than he needs, the weight could be excess retained water, which could be dangerous if not kept in check. More on this to come. Fingers crossed!
...and finally, those who follow the Facebook feed may have seen that we took a trip to introduce (or reintroduce?) Marshall to his brother and sister, separated many years ago. His recent brush with medical catastrophe has reminded us how important family is. You can remove children from harm inflicted by poor parenting, but you do not ever divide siblings. I support their connection, no matter how distant, and we made the first journey; it was a grand success.
It was my intention to send this a bit sooner, but things have been hectic around here. I am happy to say it is for all the right reasons. Marshall has come home! He joined us on Sunday and it was the best Mother’s Day gift ever.
This week we’ve had several appointments scheduled to check out his early progress. So far there are no results to convey. The endocrinologist mentioned that his DDAVP dosage is very high (almost too high for pills) and this is a bit concerning. The pituitary stalk was left intact by neurosurgery so this should be functioning better. It’s early though so we’re in “wait and see” mode for now and he takes his 17 pills a day like a champ. Marshall is also starting to accept the necessity of being poked with needles for drawing labs. There was a time when needles incited a screaming fit, whereas now he still cries beforehand but during the action he looks at it and says “I can’t feel anything.”
We appreciate the support coming from all sides right now. A special shout out should go to Marshall’s friends at CC Mason Elementary. Not only did many come visit in the hospital, but it seems the whole school is engaged in his story anxiously awaits his return (part-time) next week.
On a final note, the fundraising goal is just around the corner! Please share the link, especially via Facebook and Twitter. GoFundMe has offered to celebrate his success with a BIG check when the goal is met. I would like to give Marshall the experience and we’re almost there! We’ll keep the site active for a while, even after the goal is met, to make sure everyone gets an updated weekly status. Assuming all goes well, the site will likely be closed out in the fall. Birthdays are a new chapter and this is one we’d like to finish!
While we were excited to have him home with us, we understand if he is not ready then it's not the right time. We are hopeful this will only delay him a few days. I'll update again when we know more. In the meantime, your continued well wishes and prayers are appreciated. Please share this as well, thanks!
Adding pictures of my little guy -- want him home!