There is a community on Facebook called karing for Katie. she has a type of glioma similar to John Johns. But, John Johns is considered more aggressive. within 6 weeks of this childs brain tumors beginning to grow back, she was dead. yes, dead.
We are awaiting John Johns scan on the 31st to see if the cancer cells have formed tumors. I have had a stern warning that now is the time to prepare myself from the oncologist. I had a moment of panic when I read Karing for Katie’s update. She had died only 6 weeks after the tumors had started to regrow. I can not image losing John John in the next six weeks. It sickens my stomach and makes me cry. and throw up. yes. reality has a way of setting in physically. I read that post and threw up. 6 weeks….
Can you imagine the last 6 weeks with your child? even in good health it is too short to do every last thing and capture every moment. But, in a decline it is devastating. Every day is not a good day and you grasp at moments. not memories. you grasp at small conversations. not wonderful days at amusement parks. days spent in bed mostly drugged and sleeping to avoid the pain and side effects of brain tumors. not a glorious going out of this world. vomiting and headaches. the hallmarks of brain tumors.
We have had one episode of throwing up this week, followed by three days of consistent headaches. I can see my future. I am bleak at this point. I don’t know what that mri will yield, but I doubt it will be good news. the symptoms are there. we are throwing every homeopathic remedy known to man at this cancer. I just don’t know that it is working.
Perhaps I am just a bit down. But, the reality is I AM SCARED. I am scared to lose another child. I cannot see my daughter without my son. It is a sad and bleak outlook. They are best friends and best enemies. A true sibling rivalry with a deep love. What shall I do with just one child? Ask Gabriella miller’s family. she died of brain tumors and left her brother an only sibling. what a dynamic shift. Good Lord.
I think about 6 weeks and it scares me, what if….what if….what if…..what shall I say. I am not generally a fatalist. but, this hit me in the face hard. I know John John will die from his brain tumors. it’s a matter of time. We have done as much as possible with this time as we could possibly do, and continue to do so.
I said in an interview with abc news, I said “a future for John John is a hard thing to contemplate ” I don’t know if there is one for him.
He has more titles than most people I know. He is a U Penn basketball player, A fireman with Evesham Fire Dept, A US Federal Marshall, he’s a workin man by most people’s standards. But, he is 4….and has brain cancer. who knows what tomorrow will bring.
I await the 31st of July for his next mri to tell us what we are to expect. It is scary and intimidating. I feel so out of control. I just pray we have more than 6 weeks.
enough for now,