So, here we are at the condo…spending our quality together time…having a nice, low-key blast. And I haven’t shot a single picture. ME! No pictures. I’m sure it would be 1000 pictures of “here’s Peyton in the pool” and “here’s Nathaniel getting in the pool” and here’s Rachael walking to the pool”…I think you get the gist of what our week has been.
We are lucky enough to have a condo that has the pool directly outside the door. We’ve been enjoying it to the max. The kids are loving it, Peyton is starting to brave the water without her normal floatie swimsuit and we’ve made an overall nuisance of ourselves being loud and playful. We spend our moments not in the pool just lounging around and indulging in utter laziness….it’s awesome. I am so excited for the weekend, when some of the moms are coming down to hang out and just relax with me.
Today I took the kids to the Children’s Cancer Center for Lil Tales and it was a little sad because for many of the kids, and our student age volunteers, it’ll be their last Tuesday for a very long time with school starting up next week.
In the time that I got to share with the other moms we had some rockin’ laughs, but also got some very disheartening news about some of the kids.
One is Delaney Potterbaum, a little girl diagnosed with a low-grade Optic Glioma, which simply put is a tumor on her optic nerve. She had been responding favorably to treatment, had undergone a state-of-the-art proton radiation treatment in Jacksonville and had been doing so very well. Kara (her mom) shared that suddenly there were signs that Delaney was different, and then an MRI scan showed that her tumor had grown considerably. This was such a shock because the family had been told that her type of tumor and the low-grade status meant that (and I use these words lightly) Delaney would do well with the treatment plan and they wouldn’t have a lot of worries about growth. The 4 cm growth, it doesn’t sound like much but that’s major when we’re talking about tumors in the brain, has already started affecting her coordination and her balance and we could see a big difference in her just from a few weeks ago. Delaney’s new treatment plan involves some new chemotherapy, I don’t know if she’ll be getting radiation again because Kara explained that a person can only get so much radiation in their lifetime and Delaney may be maxed out.
Delaney gets treatment at our hospital, with the same oncology group as Peyton, and they are just getting a new brain tumor specialist to join the team tomorrow. I hope this doctor is able to guide the Potterbaums as they deal with this tumor’s growth and aggressiveness.
As we talked today about the start of school and all the fuss and bother of getting supplies and getting the kids out the door on Monday, we were given a true reality check. Hannah Deal, she’s the little one with a Diffuse Pontine Glioma (a tumor around and in her brain stem) is getting worse and worse with each day. Her tumor is growing daily. Hannah’s mom Lisa told us that Hannah wants so badly to go to school with other kids her age, to do this thing that is so normal and regular…and she can’t. Because of the growth of the tumor, she has double vision and she falls a lot, so it is a real danger situation to her. This little one was so looking forward to going to Big Girl school and now it is taken away from her. As her family fights for the strength to continue battling, never giving up and never ceasing their prayers for Hannah’s miracle, my heart just breaks for these children who have so much stolen from them. Hannah is too young to understand the many things that are being taken from her by cancer: years of life, driving a car, to kiss a boy, to dance at her prom, to have a family of her own, to see her own children playing around her.
I can get so angry at what this disease does to people, women, men, children alike. But we never stop searching for a cure, it just makes the resolve to find the answers that much stronger. I hope that by getting involved and dedicating my love and determination to this cause, I can help in some small, or LARGE, way to helping these kids have a fighting chance. Please keep our efforts with the Pediatric Cancer Foundation for the Cure Kids Cancer Challenge in your prayers. I thank all those who’ve sponsored us for this event, but the Mighty Mighty Mayhews have a long way to go in meeting our goal.
The Mighty Mighty Mayhew walking team!
I have so much admiration for the parents of all these kids, those who seem to handle it all so well, and those who fall apart at the slightest thing. We’re doing the best we can, we make it through each day with faith and prayer in our hearts and we give 150% to our kids so that they don’t have to understand the true depths of the pain we feel at watching what they go through.
I’ve had the chance to meet and get to know Sydney Sims over the past few months. Her family is just amazing! Let me tell you what they’re doing. Sydney has a very aggressive form of Neuroblastoma, she’s relapsed twice. Her body rejects the most effective form of treatment for kids like her. A new treatment has been offered up as a chance, a chance that would raise her odds from 20% to 60%….that’s from 20% to 60% that she’ll LIVE. Now, if that was your child, what would you do for that extra 40% chance? To get this this drug manufactured will take 3-5 million dollars! Would you let a measly 3 million dollars stand between your child and a treatment that could save her life? I think not!
Sydney’s dad, Kevin Sims, is gathering with other Neuroblastoma dads from across the world to band together and fight for this treatment. In September, they are taking the Lonliest Road. They will be biking from California to Washington D.C. as a way to raise awareness, raise money for this treatment, to give their kids a fighting chance, and to give hope to all the kids out there. How PHENOMENAL is that? THAT is the meaning of being a parent. Please keep this group in your prayers, check out the website they’ve set up at www.loneliestroad.org. Support them in any way you can, if it’s a donation, if it’s an email of prayer and support, if it’s connecting them with someone who you think would be interested in sponsoring their efforts….just take a minute and do it. If you’re thinking, I can’t afford it….if it was your child, wouldn’t each and every precious dollar count?
Wow, I have spent all this time and web space posting about other people’s kids….I am just thankful that Peyton’s needs are simple, that’s she’s doing well with her treatment, that we have her here to love and hold and snuggle. We praise a wonderful and powerful God for the blessings He brings and the wisdom He shows.
f.r.o.G…fully relying on God
–Anissa
