Time Bomb Ticking…

Here is the news we all didn’t want to hear! My little guys tumor has grown, and to make things worse he has another tumor growing. The doctor is telling us it is outside of his brainstem. They tell us it is still inoperable even though it is outside the brainstem. The reason is because it is still believed to be attached to the main tumor. Hence, even if they could get everything up to the brainstem, it will still grow again. So you all ask “What do we do now?”. Well, we start new treatments, and try to find something that will make the tumor respond. By this, the doctor says, a response may only be that the tumor has stopped growing. We have stopped giving him Temodar in January because his blood counts were too low, and the MRI we just did on Feb. 2nd 2006 has shown us additional growth like I said earlier. So no more Temodar, it was not working anymore. Currently, we are trying Hydrazine Sulfate along with all the other suppliments that we have been giving all along. Hydrazine Sulfate is suppost to aid in treating cachexia which is the wasting away of the body after cancer treatment, but there are some who believe it has an anti-tumor effect and will help in the reduction of the tumor. We are not sure what is going to happen next, it is a big waiting game that quite frankly I wish never would have happened. We are only going to give the hydrazine sulfate about a month to see if we are getting any improvements. If none, we are going on to the next treatment which is the cocktail I believe. The cocktail provides antiogenisis which to my understanding will attempt to restrict the bloodflow to the tumor thus starving it out. I will provide more info on those drugs when we get that far. I still can’t believe we are so unlucky to have gotten an intrinsic diffused brain stem glioma in the pontine, and then on top of that we get an additional tumor growing outside the brainstem but adjacent to the origional. The doctor says that is additionaly rare. This whole thing causes so much anxiety some days I can hardly stand it!

Ok, I like the humor of all this so I am going to be sharing the top 5 quotes from Trent since he has been taking dexamethasone (Systemic corticosteroids). If you don’t know, these steroids make you hungry ALL THE TIME! I need to preface a couple of the quotes so you understand what happened before he said what he said.

Trent has had mood swings since being on the steroids, he gets angry and then he calms down over a certain period of time.

1. “I need my Happy Water.” (before he will be not angry anymore)

2. “What are we going to eat after this?”

After getting a couple of doughnuts this weekend, he was still hungry I guess and we told him no more doughnuts. Here is what he said…

3. “I think Sammy (Our pomeranian) wants a doughnut, can I share one with him.”

4. “What are we going to eat for breakfast tomorrow?” /
“What are we going to be eating tomorrow?”

And last but not the least, we had to put our Noble Chow Tyler to sleep over the weekend, he was ailing from a couple of different diseases, and Friday night we believe a coyote got a hold of both of his back legs. Needless to say the dog was not doing too good after all of this. So back to the story… We explained that Tyler is going to heaven and will be waiting for us along with Dillan(poodle) and Jitters(hamster), two other animals that Trent grew fond of. We tried to explain cremation to Trent, because we are going to cremate Tyler and put him on our mantle at home. Here is what he had to say to that…

5. “When we fire up Tyler, can we make some smores?”

I was on the floor laughing! Trent means well, we just did not do a very good job explaining this one to him I guess, or he was just HUNGRY!

Poor kid, I hate seeing him this way. I often have asked to be put in his place. It just does not make sense why a 5 year old boy has to endure this, and yet he does with a smile most days. We love our son so much, what can anyone say? I know most parents say their child or children are just the best kids on the face of earth, but when we say it for some reason it just does not say enough about ours. Trent and Ariana both are just special…we try to show them how to be kind and loving, and they show us all the time the love they have for each other. Always remembering the other when it is time to get that special toy or trinket from the store, even if the other is not there. There are so many things I want to say about Trent, but words are just not going to cut it right now.

This may be silly, but I have started telling Trent 3 things I want him to remember. Mommy and Daddy love you very much, Never be afraid, and always go to the light. After I said this the first time, he says “Daddy stop it your scaring me” with a big smile on his face. He must think I am losing my marbles. We have not told him about what might happen to him. I don’t want him to be unprepared for the possible future, but I think exclusion is necessary at this point. It is scary thinking about a future without him, and yet knowing he is going to a better place. I want to know that he is going to be ok, and I want to see him grow old. It is not right to outlive your children. What’s up with that? Yet it still happens every day. I know I don’t understand what Gods plan is, and I may never know. I don’t know if I can swallow that right now, I ask God to please help us understand so we can stop greiving at some point. This can’t be happening for no reason.

As you can tell I am a little frustrated and confused, and I am venting a little here. I am going to go for now, but I want to say one last thing before I go. Everyone who has children, I want you to go hug them and tell them you love them and give them smooches one more time before this day ends, because you just never know!

Clint[newline]