Today is Thanksgiving Day. An American holiday which I have celebrated over the past 15 years. I enjoy going to my in-laws and seeing my extended American family. I miss my British family, but it doesn't his me as hard as Christmas, the holiday I have celebrated all my life.
Thanksgiving is a nice holiday where people gather and enjoy one another's company. It is, in fact, a lot less commercial than Christmas, which I appreciate! But the best thing about Thanksgiving, for me, is that I get to really be thankful. I am one of the luckiest mummy's in the world. I have both my boys with me....and I almost didn't!
You know about Sammy, but Jack was no walk in the park either! He decided to come out after just 24 weeks gestation, so I fought to keep him growing inside me with Magnesium, a Terbutaline pump and months of bed-rest. We made it to 36 weeks and only a few days in the NICU after some complications from the emergency C-section! At five years old, Jack was diagnosed with Bacterial Meningitis. He had an emergency lumbar puncture and, after 10 days in hospital, we administered medications via a picc line in his chest. He and Sammy both have neck and chest scars from their lines.
With our crazy battles to keep our children healthy, I really do appreciate spending today with my sons.
I am thankful for the excess laundry I do with two boys who can always find the dirtiest place to play
I am thankful that I get prodded awake in the wee hours of the morning to tell someone they are okay after a nightmare
I am thankful that I have to say no to social events because my kids need me for one of their events
I am thankful that I have been known to have a mini-meltdown as I work out how to get my kids to tidy up
I am thankful that I can hardly type because Sammy has just sat down next to me, pinning down my right arm and chattering away as he plays his allotted time on the Wii
There are so many other things I take for granted too often these days but I am reminded just how lucky I am today. I am with my boys, I'm about to make a dish to take to the family gathering, and I am complete....not sane by any means (but that is because I'm a mom).
This is a very difficult post for me to write. Mainly because I know most of those reading it will already know the pain of having a child with cancer, or be a cancer warrior themselves. I don't need to 'tell' you how things feel!
But for me, I am getting something off my chest...you know I use this blog to do that. And, sadly, this post does not apply just to cancer, but all conditions which may have lasting effects on a person, no matter how old they are, for the rest of their life. I include Sammy's brother, Jack, in this post. He has asthma. He has a pre-existing condition, just as Sammy does. I am also including anyone with Lupus (my lovely mom), Celiac's disease (my wonderful friend), Crohn's, Diabetes, etc.... There really are too many to mention. BUT, I guarantee, you will know someone who suffers from such an illness.
So what is on my mind? Well, there is a big election coming up, as you know. I am well aware that everyone will have their own political views (we live in a nation that grants us that freedom), and I would never seek to insult anyone for their personal viewpoints. I do, however, want to share my thoughts. I am sure many of you already know where this is going. I am putting my personal faces to this argument, but you could easily think about someone you know.
People who have fought and survived cancer have a much higher risk of getting a secondary cancer due to the treatment that saved their lives in the first place. Chemo and radiation are toxins designed to kill! Yet the benefits of saving a life immediately, far outweighs the concerns down the road. Medical research has allowed doctors to find ways to administer the least amount of toxins in the most effective way. But almost all the childhood cancer medicines are over 50 years old, so they are still exceedingly outdated and very dangerous.
Sammy will be monitored for cognitive effects. His IQ may well drop considerably in a few years. He will also need PT for most of his life to maintain his muscle and skeletal strength. Every major organ has to be checked yearly to asses for deterioration. His heart may give out in his thirties. His reproductive abilities may no longer be an issue....he may be sterile. He is 8. He has kicked stinking cancer and this is what he will face forever.
If a certain party is elected into national and local governments, funding for research to continue to improve toxicity in treatments will stop. In addition, Sammy will not be able to get insurance for any of the aforementioned issues once he is no longer on our insurance plan. If he relapses, it is likely he will exceed the lifetime cap on our insurance (not that we have one right now, but it will come back), and we will not have the means to provide the treatment needed to save his life again. We earn too much to get financial assistance, so we would be faced with bankruptcy. (Fine...if it saves his life...but all it will mean is we are broke and still no coverage!)
Radiation
Jack may grow up with very few issues with his asthma. He does, however, need medication for it and frequent visits to a pulmonologist. While this may not break the bank, if he should suffer an attack and need hospitalization, nothing would be covered. That has the potential to leave him without adequate treatment or crippling bills. I would sell my soul to help, but WHY should my children have this to face as they grow up to become the new generation of America?
Sammy's first hospital visit after diagnosis cost over $100,000. We then spent most of the first year in hospital (averaging about $150,000 per stay) followed by two more years of treatments. Sammy will go to the clinic for the rest of his life. No insurance....????
I am a mother fighting for the lives of her children. Sure, they will be grown up by then...but I am fighting NOW to keep them alive and safe in their future. It boggles my mind that I even have to....but I do! November 6 is my birthday. I hope I don't spend it morning the future of my children.
I do not fight alone. Adults and children are affected by the threat of punishing people with pre-existing conditions. Here, a hero of mine, Mike McCready, explains why the fight is so important:
