Monday, August 27, 2012

A month ago today...

Well it's been a month since we found out Cashys tumor is back for the third time.
Surprisingly he's at least maintaining, two weeks ago he couldn't stop throwing up no matter what and what amount we put in him (thank god for the gtube), so he's pretty consistently thrown up once a day (every morning) for the past week, the week before no throwing up. He's receiving his nutrition through his gtube on a soy based formula instead of milk based. We run it all night and it totals about 14 hours a day and were up to 75ml/an hour. He's not wanting to eat anything which breaks my heart, id love for him to just scream at me for a cheese Sammy right now like he used to. :(
I've noticed his eyes are starting to move weird when he's awake, especially the right one. Which is from the tumor obviously. He's also on alot of oil right now which can also cause weird eye movements.
Yesterday after him asking and asking to get in the van and go get a "buzz" (buzzlight year) we loaded up baby sis and all and went to target and he got a toy story toy, some princess (yes princess, I tried to offer him cars, he insisted on the glittery princess one, lol) color wonder coloring books, and a small Rex toy story figurine. He was happy as can be and left and went to mikes parents house where we had some dinner for Julie's birthday. Happy birthday Julie! Although cash refused I get out of the car, it was a nice short visit.
My mom came and watched the kids today while I went to a cycling class at the Y. I love that class, it's fun and I get sweaty and do around 15-16 miles each class. It's a good workout. I encourage anyone to try.
So I came home and baby was crying cause she was hungry, my mom was flustered and then got all upset about how Cashy is just lying in bed and wanting to sleep. Give or take his dozens of yelling demands which we all come running to his beckon call, which I gladly do, because I would do anything for this sweet boy. The sleeping Is because of both the tumor and the oil. This is how he was when he was first diagnosed with cancer in 2010. It's upsetting and heartbreaking I know, i want nothing more than for him to bounce up and start playing and riding his trike again, id give my right arm for that right now. but really sleep is the best thing for him now. (yes mom I know your reading this, and I love you) you can't heal if you don't sleep.
So my aunt Diane and my cousins kila collin and casey (the boys are 7 year old twins and colty and them got along right away) came up visit us today,while they were in town from anaconda. I haven't seen them since uncle Danny's funeral when colty was 2. It was good to catch up. diane is also a 2 year breast cancer survivor and she's doing great and I'm so happy for her! She looked great too!

Our friends Amanda and nick, Sara and Ben put on a bake sale last weekend for Cashy at the farmers market and they raised $1000 for us. So very kind and thoughtful, thank you guys do much and thank you everyone who donated to the bake sale. Thank you all. Also thank you Lacee Putra for your fabulous donation as well, michelle steele for your rallying the troops for us as well, and theres so many more people i could on for days, we love you all and couldn't do it without you and your support.

So we just keep takin life day to day at this point and continue on with the plan and hope and pray for ANOTHER miracle for our sweet boy Cashy. He's such a little angel on earth, we must keep him alive. We must. It's not acceptable for anything less.

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.