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| graphicshunt.com |
A few days ago, I checked in on my page and found the following comment, posted by "Anonymous."
"SuzyQ missing you says it is time to type a few. You have a gift that seems to be true to your nature. When the time is right you will feel the loose ends drawing closer allowing a sense of renewed relief you have been seeking. When "Mom's Crusades" once again begins to flow new insights will take shape which will allow all those following to gain a shift of perception. This will let the blessings given to you extend and reshape the lives around unfolding with beauty and grace. I can close this message with "Thanks."
Anonymous, I hope you don't mind that I dedicate this post to you in gratitude to your reply. It's beginning to feel like "the time is right" to start posting again. Thank you, Anonymous, for your kind and thoughtful comments.
So, readers, what on earth do I title a post like this one? I have no idea. There's so much going on, that I'm at a loss. Not for words, obviously - I am as verbose as ever. Let me attempt to summarize the last 18 months.
Regular readers may recall that my son was diagnosed with a brain tumor in November 2010. He was almost nine years old at that time, and the news was devastating. He underwent two surgeries to remove the tumor, had the usual round of radiation, and had up until the start of this month, been having chemotherapy in pill form. Due to damage from the tumor, he also was a regular customer for physical and occupational therapies during the time we were in the hospital, and at home. He missed most of his third grade year, but managed to work hard and catch up with his classmates and begin fourth grade this past fall. My boy made the all-A honor roll, and continued to swallow his pain and pride and despair while watching other pieces of life fly by from where he felt sidelined.
When you have a brain tumor, you report for regular MRIs to monitor whether or not the tumor is coming back, if there is scar tissue, if the current treatments are doing what they are supposed to be doing. Fuzzy (aka my son) had an MRI on January 30, 2012. It showed that the chemotherapy was no longer working, and that his tumor had overcome whatever it was in that pill that had halted its progression for almost one full year. There was a "mass" present, exactly centered where the original tumor had been.
In two weeks' time, that tumor had almost doubled in size, though we didn't know this yet, resulting in the symptoms that had so puzzled us at the start of this journey: crushing headaches, and nausea. We reported to the hospital. Fuzzy was hooked up to an IV for pain medication and fluids and something to fight nausea. A scan taken that very day revealed the bad news.
Fuzzy is home from his four-day stay at the hospital, managing his symptoms without the help of an IV. We're grateful for that. This means he can roam the house as he wishes and as his energy level allows, free from dragging a pole everywhere. We are thankful that he is still himself in personality - that unflagging dry wit and sensitivity ever present. We are thankful that he has an appetite (thanks in part to the steroids, which reduce the swelling around the tumor), that he can get around the house under his own power, though the wheelchair is there if he wants it.
His oncologist expresses amazement that he is up and walking around. Far too many, at this point, are unable. To Fuzzy, all of this is just one more inconvenience on top of the many he's experienced in the last 15 months. He misses being at school, insists on doing one math lesson per day in order to keep up with his classmates.
We struggle to keep things "normal" while knowing the entire time that what he is experiencing is definitely not normal, and that it is not - that it should not be normal - to outlive your child.
It should not be normal that brain tumors, which are supposed to be rare in children, are afflicting so many in our community, here in the mid-west. There are at least three children in our school district alone, including my son, who have brain tumors.
It should not be normal that statistics state only one out of 300 children will be diagnosed with a particular type of brain tumor and you discover that your child is one out of the 300, and learn later on that another child in a neighboring town has been diagnosed with the exact same thing.
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| "Give Cancer the Bird" t-shirts available at CafePress.com |
It doesn't matter at what age you are at diagnosis, nor whether you're male or female. It just plain sucks.
It sucks that there are entire hospital systems devoted to the treatment of pediatric cancers. I'm grateful we have them, don't get me wrong. It just sucks that we need them.
It sucks that there are no medications specific to pediatric cancers: the treatments are hand-me-downs of adult medications and treatments, used in hopes that they'll work. (". . .it represented approval of a new cancer drug for a pediatric cancer indication without prior approval for an adult cancer indication. This is a major exception, as approval of new cancer drugs for pediatric patients is typically an afterthought to their development and approval for treating adult cancers. In fact, of the 120 new cancer therapies for adults approved by the FDA between 1948 and January 2003, only 30 have shown use in children." - click on link for full article)
It sucks that if you are a child with leukemia, our pharmaceutical companies are no longer going to manufacture the medications needed to treat it - leading to shortages nationwide, though supposedly this crisis has been averted.
Cancer sucks, no doubt about it.
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| Macon Chronicle Herald |
Kids are often shortchanged when it comes to medical innovations. Their illnesses, even their cancers, act differently from those of adults, so they're dependent entirely on a wealth of medications that are meant for their adult counterparts.
I don't know if there is, or ever will be, a miracle drug that would lengthen the amount of time my son could have on this earth. I don't know how many parents out there would be willing to enroll their children in clinical trials to see if something new could work in the battle against cancer. I don't know if I could, in all honesty.
Like others, I want what I want, when I want it - and I want it now. I want my son, whole, pain free, and alive for a normal adult span of years.
Just like so many others though, I can't have what I want.
What would you do?
