Just another Manic Monday

So this day (Monday April, 9 2012) is the reason I could not update this blog for sometime. Hang in there you will see why.

This  was a great and terrible day for myself.
Tanner was out of school for spring break and Tristan was not due to have a blood drawn until Tuesday and we would most likely report for Chemo Inpatient on Wednesday.

Tristan ate some of the Banana bread that Tim and Amanda Wright brought by a couple of days prior. They have been such a help to us through this Ewing Sarcoma journey that they seem to have paved the way for us.
Late morning Both boys both had a couple of friends over to hang out and play video games with.

My Cousin's Alexie and Curtis had arranged to come to the house to visit with Tristan and had a special gift to deliver.
It was so comforting to be able to visit with them as they had a greater understanding of some of the things we were going through and are facing. My Cousin was involved in a pretty serious auto accident and has come a very very long way with his recovery. He is such an amazing example of strength and encouragement to us all.
Alexie's family has some "connections" and they brought and gave Tristan a photograph and mini helmet signed by Head Coach of The Utah Utes Kyle Whittingham. Tristan was so gracious and excited to received this gift. He immediately wanted to put it up on the wall and shelf.

Thank you for making his day! Sorry about your car battery (thank heaven's we had a rescue crew there right away)

This weekend Tristan has been so active and doing things that he used to. Here are just a few. 

Love the sign!

He got to tired to ride so he carried the skateboard back.

Late afternoon today I received a call from the Surgeon Dr. Randall.  He asked me if it was a bad time to talk about the next phase of treatment (The Local Control) that would be coming up in 8 weeks.

 I told him that I had time to talk and so he did.....

He began to tell me that the next phase consisted of surgery (this we knew) with Tristan's treatment and really in any Ewings Sarcoma treatment the Protocol is about 12 weeks of Chemo (Induction Phase)- Surgery (Local Control Phase) - & 22 more weeks of Chemo (Consolidation Phase).

Dr. Randall began to tell me our options as far as surgery goes. These options were not easy to hear. 

Option 1 Radiation of the foot and Surgery to remove as much of the tumor as possible. Option 2 Cadaver Implant after Surgical removal of tumor. Option 3 a below the knee amputation. 

Ok here we go again. He then proceeds to explain to me the first two options (are not really options) and their risks. 

Option 1 Radiation/Surgery. Radiation can cause other cancers such a leukemia (Chemo treatment also has this risk) Isn't it ironic that we give them medicine to kill the Cancer that increases the risk of them getting another Cancer? This is how scary Cancer is! They do what has worked for others but nothing is for sure and I hate that.  It is all just a game of risk and gamble both of which I do not like. 

Radiation in Tristan's case would have to kill all of the tumor and at the same time growth plates in his foot and possibly leg. OK this means that his foot will no longer grow, also that they cannot guarantee with the surgery/ radiation option that all of the tumor and Cancer cells would be removed, so we would also be taking a risk of allowing any Cancer Cells left behind to spread. All to save a foot that will not grow any longer and eventually not function properly. -

Next Option 2 Apparently as Dr. Randall Described it Cadaver Implant have been "disastrous" in the past and not many surgeons will even preform them. In most cases the patients end up with an amputation anyhow. The risk of infection and death resulting from infection is very high in these surgeries. It would also most likely require some radiation treatments and several future surgeries. The function and mobility of cadaver implants is not the best either.

Last Option and best option for Tristan to have a "NORMAL ACTIVE LIFE" and live! 

Below the knee amputation, this sounds awful to many and I have talked with some of you about it.

 I am explaining these options to help you understand what I know and why this is the option we MUST go with.

 It removes the Tumor completely, and hopefully the Cancer too. The hard part about all of these options is that we are still fighting Cancer not amputation. We (Tristan) still has to has 22 more weeks of Chemo treatments and that could be longer too. We will still pray everyday that the Cancer responds to the Chemo and does not metastasize to his organs or other parts of his body. Please try to understand this is truly the hardest thing to have to accept and decide, but I look at it as there is only 1 option. I am not going to Gamble or Risk anything with my sons life. 

I believe in miracles but I too believe in choices and wise decisions. (If a miracle were to happen, I wouldn't complain)

That all being said. Yes, I alone had this information, I called my husband to let him know we would be meeting with Dr. R on Wed to discuss the options. I then called my "listeners" and sobbed until my head ached and my heart did too. I cried for Tristan, I cried for my husband I cried and cried ! 

Then it was time to be a Mom stop crying and start learning. I googled I read blogs, I read Dr's studies and manuscripts. I tried to find any one case that had a child Tristan's age that had Ewing's in the foot or the leg that went with one of the other options (and lived past the 5 year survival rate). I could not find one. ( If you can, or know of one let me know). This made my choice easier and stronger. I made a decision for myself, then I thought about how I would let Tristan make a decision for himself and it be the right decision & him to feel at peace with it. 

One last thing, If you want to help and love and support our family, Please let us make this decision as a family of 4 and support us with any decision made. I do not want Tristan to be insecure or unsure of what he is facing or what we decide, this is a no looking back but fight forward decision and choice! 

Thank You. Love You