Our Infant Son Has Brain Cancer- HOME AGAIN!!!

[pridegoethb4thefall]

https://www.facebook.com/angela.johnson.9461

I still cant get it to work, so I sent you my link to facebook!

Thanks, request sent! I did go and 'fix' my settings again, so hopefully it works... Anyone who wants to post their link, I will send a request!

Had a great day today at Folsom zoo and park. Spencer LOVED riding the tiny steam train around the grounds, and seemed to be a bit wary of the free roaming peacocks with their huge tails spread out in full display.

The steroids the docs prescribed are making Spencer cranky and making him want to sleep more than usual. Which is weird since they are supposedly known for making kids kinda hyper, and for stimulating appetite. causing some mood swings too, which are expected side effects. I HATE giving my children unnatural drugs..

The latest from the oncologist who will be seeing Spencer was not very positive. He agrees that it looks like a terminal case... BUT, he also said that out of the 5 or 6 cancers it could be, there are a few that are treatable....'treatable, but not curable'. So at some point we will be right back where we are right now....only our baby will be older and more self aware and have gone through hell and back to have lived just a few months or years longer. He said the most he could predict IF it was a certain cancer, and IF it responded, and IF treatment didn't kill Spencer, then he could live 5 to 10 years...only to be back where we are now....only with NO more options. BUT he also said he has seen things like this heal completely and be nothing short of miraculous.

How much can a mothers heart bear???? Such dismal predictions...

We are working on prayer and healthy foods and supplements...might do the surgery, only to give us time to try more of those, but thats it. No more...cant do that to him.

 

[bonbean01]

Spencer could be one of those miracles you know...so many prayers...keep up your faith and hope...after your last post, I am having a good feeling for him! Hang in there sweetie! I know this is so terribly hard on you and your family

 

[Queen Mum]

I HATE giving my children unnatural drugs..

The latest from the oncologist who will be seeing Spencer was not very positive. He agrees that it looks like a terminal case... BUT, he also said that out of the 5 or 6 cancers it could be, there are a few that are treatable....'treatable, but not curable'. So at some point we will be right back where we are right now....only our baby will be older and more self aware and have gone through hell and back to have lived just a few months or years longer. He said the most he could predict IF it was a certain cancer, and IF it responded, and IF treatment didn't kill Spencer, then he could live 5 to 10 years...only to be back where we are now....only with NO more options. BUT he also said he has seen things like this heal completely and be nothing short of miraculous.

How much can a mothers heart bear???? Such dismal predictions...

We are working on prayer and healthy foods and supplements...might do the surgery, only to give us time to try more of those, but thats it. No more...cant do that to him.

Steroids are a natural part of our bodies. The difference is that we don't normally have them in the quantities that you have to give them for this kind of disease.

As for the possibility that Spencer could live for 5 - 10 years, that could be a blessing in that medical science could find many a treatment in that time. Consider the case of Leukemia. Ten years ago the chances for a child with Leukemia were very poor and now the majority of children with leukemia live. My friend's son has Cystic Fibrosis. Twenty years ago, most kids with it died before the age of 10. He is 30 this year. Medical advances made were faster than his deterioration. God had to have a hand in that, plus nutrition and the love of his family....

Please never give up hope... Seek life. Love life. Live each day as if the next one is just around the corner....

 

[Back to Nature]

I'm really sorry about this. I really hope there is a breakthrough soon and he's able to recover.

 

[redtailgal]

Such difficult and harsh decisions that you have to make right now.

Take your time, make your decisions with prayer. Then have faith that you've made the right decision. It doesnt even SOUND easy.

hugs and prayers for your family

 

[promiseacres]

Hugs and prayers for Spencer and your family

 

[BarredRockMomma]

I hope that the MRI was good news.

 

[ksalvagno]

I am so sorry to read this. You and your family will be in my prayers.

 

[SkyWarrior]

OMG, I am so sorry to hear this.

 

[pridegoethb4thefall]

WHEW! It's been a very long journey to get us where we are now...

We were told by several doctors that the MRI results were really bad. That even surgery would give us only a few months. Unless we decided to use massive chemo, blood t-cell transplants, etc, and that would maybe buy him one or two mostly miserable years.

My answer was no, we won't do that to him. He deserves his time on earth to be happy and not painful. We decided he was not our child alone, but God's child. His to do with as He sees fit.

On January 28, we saw one of the world's top pediatric Neuro surgeons. I told him all about Spencer, and the man really, really listened. At first he agreed with the other doctors, but then he listened to my story about Spencer. And he suddenly changed his mind!!

It's a long, long story, lots of tears and lots of prayers. But in the end... Spencer had the surgery to biopsy his tumor in his brain stem, surgery to reduce the tumor, and to remove some bone in his upper cervical spine to make room for his spinal cord and swelling. Spent 10 days at his bedside in Pediatric ICU.

The biopsy revealed a LOW GRADE GLIOMA, PILOCYTIC ASTROCYTOMA, GRADE 1!!!!!!!!! Something that responds well to low dose chemo!! They now are giving Spencer a 60 to 90% chance to live beyond 20 years!!!! It's not a cure, and needs 14 months of weekly chemo, possibly a more intense brain surgery, but it's SO much more than they predicted! (Might have spelled the pilocytic word wrong) he still has a tumor in his mid brain near the pineal gland, but hopefully the chemo will shrink all the tumors. I am worried about his right side of his body, he isn't using it at all.
He had more function of the right side before surgery, but the tumor was located mostly on the right side of the brain stem, so most of the surgery was done there. I pray he will recover function soon...

It's gonna be rough on all of us. And Kaiser is telling us that they are cancelling our insurance because we moved out of their service area, even though we are barely out of the area, they won't budge, but we have 6 weeks more coverage. Which sucks because Spencer is supposed to start a 10 week induction phase of chemo in 2 weeks. How can I start treatment if I don't know where to go, don't have insurance, or my new coverage won't pick up where they left off?? Timing would be dam near impossible to get perfect. We sure can't afford treatments for him out of pocket! But, I'm not gonna worry too much.... I know God has it handled.

Will try to keep updated, but we are so busy. Spencer has lost a lot of body function from surgery, is weak and on lots of meds. He also has a Broviac catheter in his heart that we have to keep clean and flushed every day.... plus 5 other children and all the goats. Good news on goats is all my girls are bred and tested negative for cae and something else I can't remember, but it's good news!