It's nap time here at the Williams Family Homestead. The snow is coming down outside, and by coming down I mean in piles! I haven't updated in several days and mostly its because I wanted to write about something wonderful that happened, but I was stuck thinking about something else that isn't so wonderful. Now that it is the end of the week, I've decided to just let it all out!
Last week Brady and I went for his monthly physical therapy session in Rochester. It is the time of year when testing needs to occur to measure his progress. Brady's amazing PT, Linda, had a list of skills that needed to be assessed. I got exhausted just watching the two of them go from one activity to another. It was just incredible to see Brady breezing through many of the tasks! Linda and I both remembered our first meeting with her, 2 years ago. Brady was only able to stand, wobbling in the middle of the floor. I remember her asking me what my goals where for him and me replying, "I want him to walk with as normal a gait as possible." Wow how that goal has been shattered! Look what Brady can do now, look what God has done!!!
I'm sure this is an incomplete list, but from what I remember from the appointment, this is what Brady can do!
1. Brady can walk up steps, alternating legs, without using a handrail.
2. He can do the same thing coming down steps!
3. Brady can jump forward 24 inches!
4. Brady can jump off steps as high as 24 inches and land on his feet!
5. Brady can walk across a balance beam, even on his tippy toes!
6. Brady can ride a tricycle!
7. This boy can run...fast!
and perhaps best of all...
Brady can do anything any other almost-four-year old can do!
It is simply stunning to see the difference when we are at PT. I'm so very grateful for the services he has received since we began this journey over 2 years ago. As I started to realize that perhaps he wouldn't need PT forever, I began to hope that by the time he entered school he could be done with services. It seems as though this prayer is being answered. We will have our meeting with the school district in the coming months, but looks like Brady Williams will be a proud PT graduate:)
Victories like this are so meaningful after a cancer diagnosis. I daily read about families who are in so many different places in their journey with pediatric cancer. Some parents are just dealing with a new diagnosis, others are trying to sort through the maze of different treatment options, while others are learning how to move on with their lives after watching cancer take their child from them. There are so many different outcomes, and so all cancer families have different victories to celebrate and challenges to overcome.
For us, our greatest victory is obviously that Brady is alive! We celebrate that his treatment, although intense, was brief compared to many. And of course we celebrate that he miraculously regained almost-full motor function after such a horrifying spinal cord injury.
For a while I didn't grasp that some of the challenges we would be faced with might not come all at once. We were so elated to be done with treatment and were kind of in a daze of happiness. After several months, we learned that Brady's spine issues would continue to be something we had to contend with. I settled on the fact that this was his "survivor issue" or what the cancer community calls "late effect of cancer." But what I'm learning as we continue on and new issues pop up, and as I continue to connect with other families and research, is that pediatric cancer is an enemy with a very far-reaching sting. It seems as though every child stricken with cancer, will deal with life-long issues. This puts a survivor's parents in a precarious place. We must constantly remain vigilant against relapse, up to date with current research, and continuously guiding Brady's care in the direction of best outcomes for him.
If you have read here for any length of time you know that for us, our hope is from the Lord. Our trust is in Him and He has been faithful. But trusting in a perfect God doesn't make us perfect!!! Dealing with the uncertainty and fear that goes along with life since 2009 has only magnified our own imperfections and caused us to depend upon His perfect strength even more.
This brings me to the not-so-wonderful things I mentioned I've been thinking about. Because I have to, I read about the late-effects of some of the chemotherapy that Brady received in February and March of 2009. If you remember, he only received two rounds of chemo and it did nothing to change the size of his tumor. Matt and I will never know if the chemo helped to mature the cancer cells or somehow make the tumor easier to resect, but we have never regretted our decision to stop chemo and research a different approach. So, as I scanned the awful list of dozens of different chemotherapy drugs, I found the 4 that Brady received and the potential (although not likely) side effects.
Carboplatin: 1. hearing loss 2. neuropathy 3. kidney damage 4. Leukemia
Cispltin: 1. hearing loss 2. infertility 3. neuropathy
Etoposide 1. Leukemia
Doxorubicin: 1. Leukemia 2. heart damage
I want to say loud and clear, that most kids with Neuroblastoma have many, many more rounds of chemotherapy than Brady did. Two rounds of chemo is not a lot! However, the risk is still there as you consider that two rounds was enough to make his hair fall out and to wipe his cell counts two times over. Plus, if you ever want to be shocked, spend some time reading about what is in some of these chemo drugs. It is just horrible.
We have a healthy awareness of these potential issues, but certainly haven't been paralyzed with fear over them either. But it was funny I should stumble upon this list of late effects because I noticed Brady boy doing something different recently.
In the past few weeks I have noticed Brady saying, "What?" and "Huh?" throughout the day. Certainly not unusual given that he is a 3 year old boy, but coupled with the fact that he looks at my lips a lot while I'm talking, there is a chance he may be having trouble hearing me. The rational side of me is assuming he has some ear wax built up since he has been sick a few times this winter. Yet on the flip side, I cannot just hope it is something normal and not investigate. Just as we did with the lumps in his neck a few weeks ago, we are going to the doctor next week to have his ears checked. Actually when I called the doctor's office and spoke with the nurse, she commented that she was surprised that his oncology team didn't have his hearing check post-treatment.
I feel as though this cycle of alarm, worry, and constant analyzing of what might be will never end for us. Where would I be without the constancy of a God whose promises are new each day and never fail?
Thank you for reading all of this (if you still are!) I never want it to seem as though all we think about is Brady and his cancer. We can go weeks and weeks without even talking about it these days. But as I described above, our battle is not over and we must remain on guard and always, always fight for this boy. He deserves it.