Wednesday, August 22, 2012

Battling brain cancer for the 3rd time in two short years.

So as many of you know, Cashy was re-rediagnosed with the same damn sPNET brain tumor that has taken over his little short life yet again on July 27th....for the third time.
He had been feeling crummy and complaining of his tummy hurting since the third week in June when we went on our family trip to San fransisco to give out reggae runners to the local children's hospital, 20 total!! The biggest reggae run yet. He started lounging around more, sleeping more and an occasional vomiting here and there which progressed as the weeks went on. We took him to his pediatrician to try and get to the bottom of why his tummy was hurting so bad, he had a ct with contrast of his abdomen and colon. He had ultrasounds, xrays and we couldn't find anything wrong. So we insisted on an MRI of the brain to rule out that nasty cancer. Well we got a call from dr Randall around 4 that afternoon saying the tumor was indeed back, in the same spot and it was 2.5cm.
We were devastated with the results. We had the thought a few times that the tumor was back but kept trying to reassure ourselves that it wasn't the cancer and that maybe he was having side effects of the radiation treatment as they did radiate his abdomen while doing the spine. Wasn't the case.
How could 6 weeks of intense radiation therapy not keep the cancer away longer than a few months. We were so disappointed, and now scared for Cashys life once again. How can life be so hard?? Why does this happen to precious innocent children? Why can't they just get a chance to play and grow and be a normal happy healthy kid.
The reality is 47 children are diagnosed with cancer daily and 7 will die daily. What kind of outrageous numbers are these? Why is it that childhood cancer has the least funding of any disease. Pediatric aids is funded 3 timed the amount as pediatric cancer is? In not saying pediatric aids research isn't a must, but the numbers of children with cancer with the numbers of children with aids is way way higher.
When Cashy went through high dose chemo and bone marrow transplant, they told us this was the most promising route of treatment with highest success rate. Did you all know that the chemo that he received for all his 6 rounds where chemo drugs from the 1970's!! Isn't that outrageous, doesn't that just enrage you?? That in the past 40 years they haven't came up with new drugs to fight cancer?? Doesn't that seem odd?? Do they even really care? Probably not. Not till it's one of their children or grandchildren. Then maybe they will.
Radiation only offered Cashy a 30% chance of 5 year survival. Shitty odds. But we went ahead with it anyways, in hopes to bide more time with our boy. Maybe that was the wrong decision. I dont even know anymore.
I'm just angry, angry angry and Just royally pissed of that my precious boy had to endure this pain again. I wish I could just transplant that tumor into my brain and let him live a normal heathy life, something I want more than anything else.
We promised Cashy no more pokes, no more scans, no more inflicting pain. I hope to god we can keep that promise and he won't ever need anther poke again. God let me keep my promise.
People are always saying, "oh I can't even imagine your pain, and how you all feel".......people, don't even try and imagine the pain in our hearts, it's not physically possible to even know unless your going through this and I hope to god no other child ever has to go through this again, but reality is 47 kids are diagnosed daily....47!! It could be you, your neighbor, your nephew/niece, your grandson/granddaughter, your sister/brother, mom/dad. Anyone. Cancer has no rules to abide by. It doesn't care who it is.
So now we are taking the natural approach and fighting cancer this time at home with everything we have. High dose cannabinoids, gerson therapy, we're also using a promising drug that doctors in Canada have been curing cancer with called DCA, there are some side effects but none worth worrying about at this point. Its very promising and we are excited to add this to our protocol. Google DCA if your interested in learning more about it. We ate confident that all these things together will help fight this nasty beast and give us more time with our boy. If it doesn't well we know we tried our damnedest and Cashy will die at home and knowing we all love him very much ad that we have tried everything to keep him alive. He's tired. He doesn't want any more conventional treatments. We know this. As much as I would love to Just pump him full of chemo in hopes that it would work, reality is it won't and the doctors told us it probably would only buy us another month or two. Why put him through that pain and agony, Judy so we can have him a little bit longer. It's not fair and it would be selfish of us to do so.
So I sit here tonight looking through old pictures of Cashy before he was diagnosed (a ripe 22 months old) and my eyes swell with tears when I see his smile and his long hair and thinking to myself wow, he was bigger at 20 months old than he is now at 4 years old. It's insane to think we've been fighting this beast for 2 years now, over half his life. It's agonizing and heart wrenching to think about.
We got home this afternoon from our lovely and relaxing vacation at seeley lake in a beautiful log cabin that a couple of amazing secret admirers got us for 4 nights. We all had a blast and are thankful for the memories that we now have. Thank you whoever you are, we are truely blessed to have such great people in our lives. Thank you thank you, you dont even know how thankful we are.
Thank you everyone else who have donated their time, energy and hearts to our family during this third battle of fighting cancer. We couldn't Be more appreciative. We love each and every one of you.
Cashys tired, he wants to sleep alot, but we did get his vomiting under control and he went a whole week without throwing up ( he was throwing up 7 times a day or more). We have him on tube feedings again as he was dwindling away with all the vomiting. He's now more comfortable and has been wanting to eat little bits here ANC there, although he is very very picky. Lol.
This is him sleeping peacefully on the couch tonight.
Alls I ask is everyone please please keep him in your prayers and thoughts as we battle this horrid disease again.
We love you all.
The Hyde's.

12 comments:

  1. My heart aches for you all right now. I remember those days when my Scotty was sick. We tried everyTHing except at the time "black tar" a friend of the family swore shrank tumors. I will continue to send all my love hope and positivw energy. Much love Sara Elizabeth

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  2. I'm curious as to why you aren't working with Epsilon. I talked with Corin from DOOBONS.com and Dave even told me that he spoke with you guys. Why not Epsilon? That is Cashy's fighting chance.

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    1. Haven't heard a thing about epsilon?? What is it?

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    3. Dave Mapes? In Sacramento? Mike Hyde was supposed to go meet Dave and has been for the last couple weeks. Now, I just got word from Dave that Mike's transmission went out on the way and he had to head straight home. Epsilon has medicine specifically made for Cashy and it's perishable. We need to get it to Cash ASAP. I was the one that was able to set you up with Dave Mapes? Please let me know if you know who I am talking about. Dave Mapes (Epsilon) was introduced to Mike by John and Corin from DOOBONS.com. Dave has made medicine for Cash. If none of this is ringing the bell then we need to talk. Please let me know, this can be Cash's only hope and Dave has a good track record.

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  3. I cried as I read this but then I get pissed off. I too, cannot believe that so little effort goes into research of childhood cancers. Children should not have to die of it. We should be doing everything in our power to make sure they do not. They should not suffer. YOU should not have to watch Cashy struggle and fight and get worn out from just trying to survive! You guys are all in my thoughts, and I send love and healing energy to you. Nancy Moore

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  4. All I can think to do is send my love to Cash and your family.

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  5. OMG..this isnt fair, and it just sucks..cashy doesnt deserve this again, and you guys at parents dont either, im so sorry that you guys have to go through this..my heart goes out to you..you will be in my thoughts and prayers...sending lots of love!!!

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  6. I must ask...Have you ever been referred to St Jude's Childrens Hospital? I've been a donor there for years and had thought that most parents were referred there?
    I'm so sorry that Cashy and the family are going through this again, love to Cashy and prayers for you all.

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    1. You know the protocols we did for Cashy are the standard treatments they do all around the US, theres a group of doctors that confer and discuss treatment plans and this was standard treatment for such tumor. We did all the conventional treatments we could. And try didn't work.

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  7. We have been praying for Cashy for the past year when we learned of this, and continue to pray for him and your family. Your decision to do whatever it takes to help your son while keeping in your own home is awesome and courageous. We pray that more parents will have the same courage to take things into their own hands for the good of their children and families. Your story and Cashy's life are an inspiration. Remember, God is in the business of miracles and we are praying you see one today. Love to all your family.

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