What does 36 cancer free REALLY look like?
It's NOT all SMILES and BALLOONS...
Cannon is cancer free - shouldn't it be all smiles and balloons like we see on the tv adverts?
The huge misconception...
What does 36 days cancer free REALLY look like?
Cannon woke up at 1am screaming:
It looks like this:
Despite the fact Cannon is considered 'NED' (no evidence of disease), the sheer misery of cancer invades our lives. Every aspect of our lives.
Cannon, only two years old, takes four large capsules a day. They make him anxious and scared and give him mood swings. He is two! The medication he is getting is for adolescents and adults! He is two!! Why? Because the pharmaceutical companies don't make drugs for children and the government is only giving us 4 percent of the funding pie to be divided among over 100 types of kids' cancers.
It looks like clinic appointments where a medicine is pumped in Cannon's veins through a port in his chest for 45 minutes and he has diarrhea explosions all over him down his legs - not once, but twice.
It's placing pee bags over his penis and waiting for hours for him to urinate.
It looks like being sedated and being placed on his stomach while holes are drilled in his back to take a sample of his bone marrow.
It looks like toxic medicine being pumped in him three days in a row so that he can be sedated again two days in a row and given two full body scans.
After that's all done he is off to Michigan to get him on yet another trial that will mean two years of traveling to Michigan, not to mention taking 8 capsules a day!
Well, like we were told on day one, "The cancer your son has kills more kids than any other form of kids cancer". Why? Because it comes back. So even though we don't see any cancer on your son's scans - there's a pretty good chance it is still there and if it comes back - there is no cure and you would just be buying time..."
I'm sorry... WHAT???
So chemo, surgeries, stem cell transplant, radiation, 6 months of antibody therapy, two years of DFMO and it will PROBABLY come back? I don't understand.
Cannon didn't get back to sleep until around 4am. He cried, needed comforting and was anxious beyond what any two year old would ever be.
So no, cancer free ISN'T all smiles and balloons...
It's living in three month segments, waiting for the next scan. It's medications daily. It's sleepless nights with anxiety. It's sore stomachs from the medicines. It's hearing aids. It's occupational therapy. It's speech. It's educational physiologists. It's physical therapy. It's eating issues and diarrhea. It's weakness. It's not all smiles and balloons.
Cannon is impacted for the rest of his life. Someday I have to tell him he can't have children. Someday he has to tell his partner that!
It's been said before that the treatments these kids endure are barbaric, dated and not in line with other treatments for adult cancers. If you don't agree with that, head to your local hospital and shadow a child life expert and watch the misery that is the playroom of kids with cancer.
It has changed OUR family forever!!!!
The treatments he endures are dated and barbaric! That's right I said the word!!! And it's true!!!
Someone said it yesterday... we don't use computers that are 50, 40, 30 years old, yet we use treatments on our greatest gifts of our lives - our children, our grandchildren.
It's not right, fair or just!!!
It has to change!!!!
One mad mumma-bear!!!
Written by Mumma-Bear
Cannonball Kids' Cancer
Thankful For The Fight
36 Days Cancer Free