Tuesday, May 15, 2012

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
Consolidation Phase 
22 more weeks (11 weeks of Chemo treatments 2 weeks apart)

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.

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


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