Thursday, April 12, 2012

"U" are amazing

Something to SMILE about !!

                      Look who stopped by for a visit! Tristan is going to have a great day! Wow!

This : ) boy won't take off the hat & shirt Coach Whittingham gave to him : )
Amazing how big a difference a little special support can make!!! Thank you all!
He can't stop talking about the visit.

Goofy with Mom!! Love this boy!! 

Tuesday, April 10, 2012

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)

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

Monday, April 9, 2012

Easter at Home YES!

I have been meaning to update but things were feeling so good and normal around our house that I really did not have time, this is a good thing!
Tristan's appetite has been steady and he has now gained back 7 lbs! YAY! He looks so much better and has been feeling great, so great in fact that things felt back to "Normal" around our house.
He has been spending more time outside. The nice spring weather has helped with this too.
Easter was fabulous because we were able to stay home as a family. Tristan was supposed to go in that Friday for the 2-3 day chemo treatment but on Thursday after his Home Health blood draw, Nurse James Called and his Platelet counts were too low to do Chemo. Tristans  count was 45 and it had to be 75 to continue.
I don't think any of us were sad about this news, it does set us back in treatment another week but it was so nice to be together! Saturday my family all colored eggs together it was quite entertaining. Tristan has a very artistic side. He made some very beautiful eggs and then we all made some colored eggs that said "Cancer Sucks".
Easter morning my Sister, her boys & Cousin Whitney's little lady Preslie (they live in the other side of our house) came out for a big easter egg hunt in the front yard area. It was perfect, there was so much candy and eggs I think even the older kids started to get bored. : )

Tristan was feeling great both my boys had lots of smiles. He was also feeling good enough that we were all able to go to the first hour of church. He still gets very weak and tired after about 1 hour.

Later that day after a nap, we went to The Chidesters for more Easter fun. I was actually surprised at how much Tristan was able to do today.

One thing that he has been struggling with is the way that people are acting around him. People are so concerned but don't know what to say so typically they just ask him a lot of questions. If you know Tristan then you know he is pretty soft spoken and does not like to be the center of attention.
When he gets uncomfortable or does not want to talk anymore he just points to me and wants me to talk for him. He actually asked me on Easter "Mom why are people acting so weird and asking me so many questions?" "I just want to be normal".  --- I know Tristan I want things to be normal too. We have a new normal now.

I will try to figure out how to make a slideshow with pics but for with it!

Tanner and Tristan received a few gifts for Easter but for Tristan (and possibly Tanner) this year the best gift of all was that Chris and I removed his feeding tube before he went to sleep. I told him that when he was able to gain all of the lost weight back it would come out. How wonderful it was (after the crying and screaming) to be able to remove it.

Sunday, April 1, 2012

A pretty normal weekend

HE EATS!  Tristan woke up Friday asking for McDonald's breakfast. YES! he has actually had quite the appetite this weekend (mostly junk food). I think he is enjoying the fact that if he asks for it, we find a way to get it!  You bet I drove to McDonald's in my pajamas to get this Sausage McMuffin! Other things he now has a taste for: Pepperoni Pizza, Chilli's Cajun Pasta, Pizza, Vanilla Ice cream, Pizza and Pizza.  He has asked for Pizza for Breakfast lunch and dinner. What you want Ice Cream and Pizza for breakfast? Let me get my shoes on! 

He has gained back 3 pounds. Now that he is eating he will still have the feeding tube run for 12hrs through the night. Once he reaches his original weight they will consider taking it out and see if his appetite says strong and he is able to maintain it.
Right now he is taking a medication that increaces his appetite called Megace, so we will see if he can continue to eat without the help of the feeding tube and medicine.

My Aunt and Cousins came today with Flowers for my yard, gloves and Potting soil. They weeded part of my yard and planted some beautiful spring flowers.Tristan even came outside to visit with them and enjoy the sunshine.

Thank you so much. She told me that she didn't want to tell me they were doing it because I might try to talk them out of it. (she was right I would have said no, but it looked so great, I love that they got it done and with all of them helping it did not take long). I kept looking at the weeds and walking away because it looked to be an overwhelming project. Thanks Osbornes!!

He has been feeling pretty good. It comes in spurts, he feels great eats and then he falls asleep...newborns! Chris really wanted to take him shooting this weekend and I am happy to say that he wanted to go and actually hit the Target. He was weak and slept all the way there and all the way back but shot better than the rest of us. : )