Can't sleep : (

Today I had a Radio Frequency Ablation procedure on my lower back (stemming from a car accident in Sept. 2011). These procedures have been postponed somewhat due to Tristans diagnosis and frequency of his treatments at Primarys. I have one procedure left and I will let the Insurance companies fight it out on who is going to pay who back. ~ the accident was not my fault. I was a  passenger in and Enterprise mini van shuttle.

Anyhow what I was getting at is that my back has been pretty painful and I cannot sleep. I started thinking about Tristan and the pain he has endured and is yet to endure. I cant imagine the pain and the fear he will be having when he undergoes his "procedure" (amputation).
I have not been concerned about this until I sat down tonight and realized that we are at the beginning  of our 5th round of Chemo. There are 6 rounds before surgery. Although this time has gone by fast and the last couple of rounds have been more manageable. I find myself not wanting to move forward to the next Phase "Local Control".

Of course there is still No doubt that we are doing the right thing. The problem is that I just want him to have more time, doing the things he feels well enough to do.
When he wears a hat (always) people don't even notice his bald head. He feels more comfortable going out that way. I worry how he will feel until he has adjusted to the attention from his prosthesis. He does not like the "attention" factor at all.




He has been feeling pretty great we were able to go to a Jazz Game 16th row. Too bad they lost, It was the first Playoff game we had been too. FUN

Then we zipped around in a super fun convertible Mini Cooper that my dear friend Amy loaned to us for a weekend---she insisted & she was right it was very refreshing.

Tristan has only missed one of his brothers baseball games this season and that was because we were Inpatient for 5 day Chemo.








The Ursenbachs treated my family to a Bees Game. Amy arranged for all 3 boys to go down on the field for a pitching contest between innings. These spoiled boys came home with a Hat for Tristan a Jersey for Tanner and the winning prize, all compliments of the Ursenbachs.

He has been riding the little 4-wheeler all over the place, running, jumping playing with friends...ok so I am just trying to express that I LOVE how things feel mostly normal. I am so afraid for that to change again! I hate what Cancer is doing to Tristan's body & I hate what it does to my family. Yes we are STRONG, Yes we love and support each other 100%, but by all means this is not easy and comes with its challenges.

I have read several blogs recently (too bad I don't write them too) I feel somewhat guilty because I don't have the uplifting blog going on, but this is how I feel. As I sit here and cry for the pain and suffering yet to come for my Son, it is the lack of control and fear that I am trying to overcome.

I am trying to rely on the prayers and faith, that are strengthening & pulling us through. I will also note that I have complete faith that things will be ok. I just want it to be a little easier on the people that I love.

Lately I have had just an overwhelmed feeling that I cannot shake. Several things are contributing to this. Stress on my family being the biggest, Caring for Tristan, trying to keep up with both kids & school work, making Tanner feel special.

My husband has been having some dreams about Tristan being awake during his surgery which is upsetting to him (that upsets me).
Even though our finances are good right now, I can't help but stress every time a bill comes and wonder how we are going to manage over years of treatments.

We have a couple fundraisers set in place. I am excited because for Tristan to see this Army of support coming to bat for him he is stregthened as are we all. Isn't it funny that the only real need is a cure.

There are so many things that I want to get done, but can't seem to actually tackle. Making t-shirts, getting out the wristbands (everyone loves them), I want to put together a Bake sale fundraiser & get our family pictures done.
I would like to do as many positive & uplifting events or activities as possible with Tristan before his surgery, if you have ideas throw them my way.

Each week we are home Tristan has his blood drawn through his power port to send to lab for counts. This is done by our home health nurse Dillon on Monday's & Thursdays. Ideally his chemo treatment would be a week apart, each round is 2 weeks.


Induction Phase
Round 1
             week 1   2-3 Days inpatient given Chemo VinCRIStine, DOXOrubicin &                                                     Cyclophosphamide.
             week 2  1 day Clinic visit given Chemo VinCRIStine
Round 2
             week 3  5 days inpatient given Chemo Ifosfamide & Etoposide
             week 4  none
Round 3 (repeat week 1 & 2)
Round 4 (repeat week 3 & 4)
Round 5 (repeat week 1 & 2)
Round 6 (repeat week 3 & 4)
**Scans & tests to see how tumor has responded and check for other side effects
Local Control Phase
**SURGERY
Consolidation Phase 
22 more weeks (11 weeks of Chemo treatments 2 weeks apart)
REMISSION!

We just finished Round 4 and should have began round 5 yesterday. What we are finding is that he is not making counts in-between treatments. Its Not just his WBC or ANC but platelets and hematocrit levels also. Just before his 5 day treatment his ANC was too low. This made for a lot of work rescheduling the dentist appt he had (the morning of) and asking for a specific day and time the following week. 
 Tristan was happy because he got a new puppy "Jersey" that he was able to play with the whole week. I was not on board for getting another dog, but she has been great for Tristan!

We were able to get him in to the dentist to have 3 teeth pulled on Monday. He started Chemo the next Day May 1st. We had some amazing visitors right away. A very inspiring Young man Named Eric Merkley and his amazing Mother came to visit with Tristan. Eric was diagnosed with Osteosarcoma in Jan. 2011 and had a thru the knee amputation. He is now Cancer free. Eric is very athletic, played HS Basketball and had just received his LDS mission call. Tristan was a little nervous at first that a teenager was coming to visit, but just after they left he said to me "Mom I like Eric he is not one of those teenagers that thinks he is too cool and knows everything" lol. No, he was not. He was pure inspiration! Eric gave Tristan his # and said to call or text anytime, I wrote his blog address on the whiteboard and since then every nurse, Dr., Tech & Janitor was asking if we knew Eric & had a sweet story to share about him.
Thank you Eric and Kris for taking the the to visit us, oh and the whole hospital says HELLO!

Chemo treatment went smoothly Tristan was not nauseated at all. There were a couple of moments his heart rate became elevated, so we slowed the chemo down and it seemed to work. I think we may finally have his anti-nausea meds down. He came home Saturday May 5 late evening around 8:30. He still felt good enough to take a spin in the mini with the top down.




Next up... EKG and 2-3day Chemo on the 15th. Dillon came to draw blood Thursday the 10th and his hematocrit levels were very low. He needed a blood transfusion Friday morning, after  5 1/2 hours Tristan was feeling better and had more energy.


Monday the 14th when he drew blood and his platelets were too low for Chemo. We rescheduled the EKG and Chemo for Friday depending on counts from Thursday. I explained all of that probably too much, but this seems to be how it works and this is why we do not have a set date for his surgery or treatment to end.  Each week we cannot go in for treatment adds an extra week to his treatment.
This week we also had scheduled to participate in the Childrens Miracle Network telethon Commercial on KSL. Every year they do this to raise money for the Hospital.
Tristan was asked to write his story about his hospital stays and then he would be filmed reading it.
 Childrens Miracle Network raises quite a bit of money money for the hospital and they are and amazing organization.

It will just make an extra trip to PCMC this week for us : ) Well worth this trip for a good cause.

I am so grateful that Tristan is tolerating the Chemo well, I am thankful to you for your thoughts and prayers and sweet messages. Once again I am sorry I can't get back to everyone, they do mean so much to us especially on the bad days.

XOXO
Tiffany
P.S I so want a Mini Cooper Convertible Right Now.

           

Fundraisers

No charge for babies or kids in strollers. there will be a 5.00 charge to get into event for everyone 8 and older if they did not pay for walk or the rally. there will be tons of stuff for kids to do I will get his name fixed this morning hope this helps. Let me know if you have any other questions.

http://childrenandtheearth.com/

Here is the Sponsor info for The Gift of Life Brainwave event. We need sponsor's in by the end of the month. Let us know if your company wants to be part of this Great Event.

200.00 Company name goes on Posters

$500.00 Company name goes on posters. Any type of advertising to go in bags for all walkers and riders and can advertise business on all event sites

1000.00 and above Name on Poster T-shirts Gets a Booth at the event and all the above benefits also. Need sponsors in by the end of the month so hurry and get involved with this event.

http://www.childrenandtheearth.com

To contact us by phone:
 Amber Brosig 801.860.0725


Fax: 801.568-9111

"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!! 

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

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 now...deal 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.

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. : )