I am writing this after reading another child's story. A child who had the exact same tumor as Kevin, who had the exact same prognosis, the exact same percentage chance of survival. He didn't make it even through treatment. Probably one lone cancer cell went wild and proliferated tumors wildly within his small body. Here at St. Jude I have seen children die terrible deaths. St. Jude tries to do it with dignity, but really where is the dignity with all of the morphine they have to be on and their mothers still cannot hold them because the tumors running down their back cause so much pain? I am watching children (I mean CHILDREN!) go on end of life treatment. No child should ever have to be put on end of life treatment. I am angry. No mom should ever be told, well at least you have more children. What mom would ever wants to choose to give one of her children back to God before they have gotten to live a full life? What mom would it be easier for her to lose a child she carried for months within her own body because she has another child? Yes, I have been told, well at least you have more children. Like another one of my children can replace the other. To all the moms out there....would you be able to lose one of your children and just replace them like that with one of your other children?
Just the idea of losing Kevin caused me to push forward despite almost everyone nay saying something was wrong with him in the beginning. I will never forget that night waiting for Kevin's MRI the next day and how even the residents along with family made me feel like I was wasting everyone's time, Kevin just had migraines like his dad had as a kid, why couldn't I just accept that? Just the incredibly painful thought of losing Kevin caused me to research, to reach out, to try to try find the best place, the best protocol for Kevin to get treatment. Just the thought of losing Kevin caused my mommy instincts and see through the lies the oncologist at DCH was telling us when I grilled her about her experience and the protocol they offered us. Just the thought of losing Kevin caused me to pack up our almost 4 month old baby, myself, and Kevin within 48 hours and drive 15 hours through an ice storm to make sure he qualified for this protocol, to spend almost a year away from our home. I raced like crazy to get all of his medical records, the slide of the tumor Fedex to Memphis. God sent us an angel to help us get in the door, I didn't turn that angel away.
Ask any mom who has lost a child and having another child doesn't make the pain any less, doesn't remove the hole that will be a permanent part of her heart for the rest of her life. I am a mom and though I haven't lost a child I can see that hole in any mom I meet who has had to send a child back to heaven, even if she has more children.
No child should ever suffer through cancer. No parent, weither they have more than one or not, should ever lose a child to cancer.
Please sign the petition to raise RAISE AWARENESS & FUNDING FOR CHILDHOOD CANCER . Cancer is the #2 killer of children in the united states and gets a lot less funding than adult cancer research.
Rachel
3 comments:
Rachel,
I'm riding the anger train right there with you. I feel our blessings everyday, but, then again, we've been among the fortunate to have a good response to treatment and a good outcome. Others have not and that's the source of my pain and anger. We need more awareness and research to make strides in eradicating childhood cancers--and cancer in general.
I learned a few hours ago that while we returned to Memphis for Ethan's scans, a boy we have come to know and love through his family's postings passed away. I have cried most of the morning.
I am so grateful for the health and good results of both Kevin and Ethan. Both boys have fought this terrible disease with such courage, strength and grace. We are so happy that the road home is in sight for you all. We pray that others facing the same fight will fare as well.
Ethan does have an IEP in place at his school. His school went ahead and set up a meeting to put it into place, but usually the parents approach the school about it. For each of the needs Ethan has(occupational therapy, limited or carefully monitored PE, speech, etc.), a separate plan and goal was created. The plans will be reviewed often to see that he is getting all the help he needs and that his goals are being met.
We really like the plan that has been developed, but right now there is no change evident. The goals take time to reach, but Ethan is still exhaused at the end of the school day. I gave him an hour of free time when he got off the bus to decompress after school yesterday and he asked if he could go take a nap. Needless to say, that didn't happen as he would have probably slept into the next morning. I still wonder if putting him in school full-time from the beginning was a mistake. He learns the material at school pretty well if given enough time to take it in and do his assignments. But at the end of the day, there's not much left of him. Dark circles under the eyes and fatigue--it's almost like he's back in treatment.
So, we're trying to wait until Christmas break to make a decision of whether or not to shorten his days or even homeschool. As I wrote before, his counts are still half of that of a normal, healthy person.
Every day, Ethan forgets something at school. It's usually his worksheets or books or several of his jackets for those slightly nippy mornings. In the beginning I would go out to the school and retrieve the items. That proved expensive with a half-hour drive to school one-way. So, that alone is proving hard to overcome aside from keeping up with his other classmates in workload.
I don't feel I'm in any better position to guide you with regards to Kevin as I am not so sure I'm on the right path with Ethan. But, you should be aware that it might not be seamless at first. The most important thing when you return home (as it is right now) is Kevin's health. He will still be trying to heal and rest and any set-backs from added illness could compromise his recovery. School will eventually happen, but I have to side with the BMT docs in their advice to hold back for a while in the beginning. Hopefully, just being home and venturing about to see good friends and setting up that fish tank will be enough to satisfy Kevin until he is able to attend classes full-time.
I will keep you posted and let you know of any extra information that might be helpful to you as you transition home. But, here again, I also came by Kevin's room during his first round of chemo and told you that he would rarely have such yucky feeling days as that first day of chemo and that he probably wouldn't get very many infections and fevers. I remember saying that to you and I deeply regret it because Kevin faced a slew of obstacles and even though he beat them, I feel so dumb. I am so sorry about that.
Hope you all have a great week and that the counts continue to soar!
Sincerely,
Tae :)
Rachel,
I havent written much on this blog about Julian . Our carepage is the best place. I wrote on there since day one. (www.carepages.com juliansworld )
I hope I didnt upset you more than you already are (yes having a child with cancer is upseting , some people dont get that !) . The carepage might be hard to read as I dont hold much back. But you know the odds of this disease and know some make it some dont.
There is not one day going by that I dont shed tears for Julian .
Anyways... You are right Moms should never hear the words , your child has cancer , your child's head needs to be cut open , your child's brain needs to be zapped, your child went thru all this for nothing and is making his way to heaven... No mom and no dad !!!
I hate it with a passion which is pushing me to fight hard so that Kiddos like Kevin can say I beat this stuff !!!
Sending you lots of love and lots of hope...
Mimi
ps: if you ever want to email me here is the best email myriamtx74@aim.com (same email eric emailed me at )
Rachel,
This has to be so difficult for you ..for Eric..for Mike..It's a good day though...Kevin may be out of the hospital...he may be coming home soon....next week is a fundraiser where family and friends are coming together to celebrate and honor the hope we all have for Kevin!! Lets hold on to that hope.
Laura
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