Friday, August 3, 2012

Ramble





It's not often that I feel like writing on this blog, but Today I do. I know that many of you are following us on Facebook and know that Tristan has been in the Hospital for 8 Days straight. He is finally getting stronger and should be able to go home sometime this weekend we hope.
Spending several nights in the hospital gives me too much time to think! I have had many thoughts running around in my brain this week.
I have been more afraid this week than I can remember ever in my life. I have watched Tristan suffer much more than I could have ever thought possible. I have rubbed and massaged his back until my fingers literally ache. I have worried until my own stomach curls and my heart breaks. I felt more helpless this week as a mother than ever before. Tristan has been so sick. It is frightening to me how rapidly his body declined in health. I wanted to scream at the Doctors to do something more to fix him! I spent many many, many hours in prayer pleading and begging for him to find relief from the pain and to begin to heal. I begged many of you for prayers as well and I know that they are answered.
Here I go with some cliche' saying "they aren't always answered the way we want them to be" but we try to find the real reason for the suffering and pain right?

I feel comforted now, knowing that we have found a source to his fevers. I have seen him get stronger the past 2 days and his body begin to fight the nasty infection that was beginning to take over.

This Cancer stuff---Its Bad, Its sad, its ruthless! I hate it.

On Saturday July 28th we had a big Fundraiser motorcycle rally & 5K run that we had planned on for months. Cancer took it away from Tristan. He would have loved to see the support and the love that was there in his honor. Many times this week he has mentioned how unfair it is that he missed his own fundraiser.
UNFAIR? I'll say unfair. It hurts my heart to think of how "unfair" this all is for my 10 year old.
School started last week, all of his friends and his brother Tanner started a new school year.
Tristan had round 8 of Chemo therapy. Many of our friends and neighbors are squeezing in last minute summer vacations and Waterpark fun. Tristan gets a very expensive all inclusive stay at Primary Children's Hospital & a cool sponge bath for fevers.
Most of his friends had football tryouts this week, Tristan is learning how to hop across the room on one leg.
No, this IS NOT FAIR!

I find myself feeling Jealous and frustrated that we cannot do those things. I feel bad for Tanner because his life has changed so much with this cancer also. What a great kid he is to go to school alone each day, finish his homework sometimes alone all the while I know he worries tremendously about his brother.
I feel sad sometimes knowing that life just keeps going on outside the hospital walls. It doesn't wait for Tristan to get better it just passes him by.
This has been by far the most difficult, painful, crazy, exhausting week yet.
I hope that we do not ever get the chance to Top it!
The weird part in all of this is that I feel blessed in many ways. I do not always try to put a positive spin on things but guess it is just always there!
Our family has learned so much in such a short time. We are truly stronger as a family more now than ever. We have learned how to make the impossible possible. We work together, roll with the punches, comfort each other, cry together and feel the pain and suffering together.

 I feel bad for the moms that do not know their children like I know mine. I feel bad for the families that don't learn how to come together to make  important things possible.
We did not ask for & do not want these trials. I  won't say that I would do this again but the people we are today I would not change.

 I have a 10 year old hero that I happened to give birth to. I am lucky enough to feel grateful that he and all of us are alive each & every day, hour and minute.

I refuse to take the small things for granted, even if it is just a smile.
I love my family. I love my friends & all the people that support us.
I have felt a love, comfort, compassion and prayers from strangers that carry us through each day.
 I thank you all very much again and again and again!
We are blessed and continue to be blessed each day with the love from all of you, your prayers and a God that is Good and love us too.

We are tired, we are weak, we are strong and we will fight! This boy proves that even at our weakest point we are strong enough to fight.
Love to all & thanks for letting me ramble.






Thursday, July 19, 2012

Fundraiser & T-shirts

I am so excited with our Brainwave even Fundraiser Coming Up next saturday the 28th we can all have out Team Tristan matching T-shirts because they just arrived!!! T-shirts
*Reg Fit 'T' S, M, L, & XL $12 XXL & XXXL $15 *Feminine Cut 'T' S, M, L $14 *Child XS (2-4) S (4-6) M, L $10 Child XL will be an Adult S $12 you can click the donate button on the right to pay please specify sizes in the notes and add $5 for shipping if you want them shipped If You haven't already registered for the 5K, Motorcycle Rally or Poker tournament GO NOW!! There will lots of activities for kids also at this all day Event Things to do beside walk or ride in motorcycle rally Check out the motorcycle show and also the motorcycle stunt riders. Kids can do our waterslide bounce house ride in a train climb the rock wall. Visit with local Royality visit our kids store listen to the great bands shop at our vendors. something for everyone. Please make it a point to stop by and help some of these great families. We are shooting for 400 motorcycles this year we have over 200 signed up for the walk run so keep spreading the word. REMEMBER IT IS GOOD LUCK TO PAY IT FORWARD AND HELP OTHERS YOU NEVER KNOW WHEN YOU MAY NEED HELP!!!!!!! July 28th at Leatherheads that is in the parking lot of Cowabunga Bay the old VF Factory Mall http://www.chidrenandtheearth.com Under Brainwave event and Register for Team Tristan

Friday, July 6, 2012

Todays Update post surgery day


Tanner, Chris and I each woke up with a massive headache this morning. Tristan is doing well, he has some pain that they are managing with a pain pump. Sometimes he cannot get it fast enough. Once again we had some very special and incredible visitors today! He is resting now.
                                   Thank you Eric Merkley & Karsen and Nicole




                                                                         Peace


7pm 

Tristan is Visiting a bunch, sleeping A lot, Itching from meds very very much, and even Walking a Little !!!!




                        ********  Pictures of his leg at the bottom so don't look if your not ready  :)




                                          Itchy Itchy Itchy

 
Out crusing the halls like a ROCKSTAR!!




 These  visitors were real heros and also had amputations! These kids develop an instant bond and strength from one another.

                                                             Eric Merkley







                                                    
                                               Karsen and Mom



                                                  Friends and family  


                                                     







                             He is now  PROUD  to show his LEG !! :)







Last few Posts done by Tineil Huntington

I am Tiffany's sister Tineil Huntington and I have been helping Tiffany try to catch this BLOG up the best I can so she can go edit and add stuff as needed, instead of trying to do it all so thanks so much for all your love and support it is all felt and has been overwhelming at times for everyone.. THANK YOU

Upcomming Fundraising Events for Tristan

Paparazzi Fundraising Party for Tristan!



 
 
 Event · By Tiffany Dinkelman
 
 
Saturday, July 14, 2012
  • 10:00am
  • Tiffany Dinkelman's house, let me know if you need directions!
     (you can also find this event on facebook)
  •  
I'm hosting a Paparazzi Jewelry party, in my home, Saturday July 14th. All proceeds will go directly to Tristan and his family to help cover medical costs. Tristan was diagnosed with a rare bone cancer and needs to have his leg amputated. He is such a sweet boy, and could... really use our help and support.

Tristan's Words:
My name is Tristan I am 10 Years Old. I have a rare Bone Cancer called Ewings Sarcoma in my foot. I have to spend a lot of time at Primary Children’s hospital getting Chemo treatments. Chemo makes me feel sick, very tired and gives me mouth sores.
In July I will be having a below the knee leg amputation to help remove my tumor. I will still have to have a lot of Chemo treatments after the amputation to stop the Cancer from spreading.
Before I had cancer I liked going to the beach in California, boogie boarding & dreamed of surfing. I like riding 4-wheelers and playing sports with my big brother Tanner. I love the Utah Utes football team & I hope I can still go some Utah Football games between my Chemo treatments.
I am happy to have so many friends and family members that love and support me. When I am Cancer free I want to help other Cancer kids like me.
  • Thank You from, Tristan






Gift of Life Rally/Brainwave 5K walk, run or roll....


Public Event · By Children and the Earth, Inc.

Saturday, July 28, 2012
  • 8:00am until 10:00pm
  • The Draper Spectrum


  • SPONSORS PLEASE
    
  • This fundraiser is a very big event that will have several different "Teams of Children" That will be participating. ALL $ from our personal team sponsors goes to Tristan!
    This is Tax deductible and from what I hear if your business wants to be concidered of the top Uta...h companies of the year, one of the things they ask is what charities you contribute to?!
    If your company or someone you know wants to sponsor us please let me know ASAP!
    We need to get the company logos to put on the flyers and T-shirts.

    The organization is called Children and The Earth.

    $200.00 Company name goes on Posters

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

    $1000.00 Name on Poster T-shirts Gets a Booth at the event and all the above benefits also.
    (there will be a lot of people so if your company would benefit from a booth this is a great opportunity)

    It will be an all day event with a ton of activities for families, kids and adults!!! Huge prizes and raffles as well.
    (they are accepting donations for prizes and raffle too)
                                                                               
     
                                               SIGN UPS FO 5K/ MOTORCYCLE RALLY 
     
     
    You can also participate by signing up for the 5K ($20 babies in strollers dont have to pay) or motorcycle Rally ($25 individual or $30 for double riders)

    at Childrenandtheearth.com make sure you select Team Tristan.
    If you have questions about this and cannot get ahold of me please call Jodi @ 801-347-1992

    email the logo's to jodi@wadsco.com and mail check's to Children and the Earth 252 w Cottage Ave Sandy UT 84070

    I am so excited about this event! They are allowing Tristan to ride his 4-wheeler to start off our team in the 5K. I think this will be a very big deal for him to see his enormous team of support and especially because it will be post-surgery! -

    Thanks to you all from the bottom of my heart ♥

  • More special Vistitors after surgery

      You can tell tristan is still a little groggy, in fact I am glad we got pictures or he might have thought he dreamed this...   but we were so excited that as soon as he got to his room these guys showed up is put a smile on his face...  
         
     This is the 'mom connection' my boys friends mom knows these Players  Matt asiata, shawn asiata,
    and ray fenga and set this up.
    Thank you thank you 
    

        Tanner says " That was a fun visit from Matt asiata, shawn asiata, and ray fenga thanks for comming"

    Sean Asiata Utah Football 2010
           
     Matt Asiata Utah Ute football 2008 and Minnesota Viking now,                
                He was in town they have a short break...
                    Took the time to come see my Baby.
                                                
                                                     There are so many good people out there!


                                                                           Cousin Riley
                   Raeann                                          Grandma Northrup
    

    Thursday, July 5, 2012

    Surgery Day

    The Morning of Surgery










     One brave boy headed of to surgury Dr said Lets get rid of this Cancer say goodbye, he gave hugs and walked away and around the corner...

    12pm
    1 more hour please watch him and guide the doctors

    2 pm  and I still haven't seen my baby boy getting a little anxious!!




    surgeon just came out to speak with us and his words were ' it could not have gone any better and hopefully he is now Cancer free"! We are still about an hour away from seeing him because he is getting casted and a pain block.
    Below is a picture of the implant this is supposed to help stop the bone from growing and save us from more surgeries in the future.


    He is out and in a doom. He asked for Tanner first and nearly pulled him in the bed with him. Then he made a heart with his hands for us. It was hard to capture but heartwrentching. I ❤my family!!!



    Tristan's snoring has never sounded more beautiful!!!!

    Thank you once again for the prayers and love being sent our way.
    This has not and will not be easy!
    I think the tears cried now are tears of relief.
    last update 9pm he is doing great and feeling NO pain!!



    Week of Surgery

    Monday July 2nd 


    Diagnosed 4 months ago. Surgery in 4 days. Pray for counts to be good tomorrow (now today).

    ****thank you for the many prayers that have carried us this far, they never go unnoticed!



    Tuesday July 3rd

    Tristan's Counts are high enough. Surgery is scheduled for 9:15 on Thursday. It is about a 3 hr surgery. He will stay in the hospital for 3-4 days have a cast over the stump for 2 weeks and then be fit for prosthetic 2-4 weeks after depending on swelling. Chemo resumes 2 weeks after surgery and they will have the results back on the % of cancer removed with the tumor that day also.
    We are all at peace for now so be happy not sad and please keep praying!
    Much much love and thanks from our family to all of yours.
    Kinda bugged, got home and got a call to come back for blood and platelets... Wish they could have done that this morning!
    Wendsday July 4th
       
                                                                  Happy Independence Day!
    Day before the BIG SURGURY!!
    Went to Spiderman w/ Mom, Dad and Tanner,Grandpa and Grandma (Down the hill) Riley,Gavin
    Had a blessing

     
    Went and did family pictures,
    Ate crab for dinner
    Went and watched  fireworks with Mom, Dad and Tanner.
                                                               HAPPY FOURTH OR JULY!!

    Dr Randall Our Surgeon

    This is our surgeon and one of my Heros these days. I am so thankful to him for helping to save my sons life. Pretty unbelievable that we have the BEST of the BEST on out team!
     

    R. Lor Randall, M.D., B.A.

    Bio

    R. Lor Randall, MD, FACS, is the Director of Sarcoma Services at the University of Utah’s Huntsman Cancer Institute and Primary Children’s Medical Center. He has a busy quaternary referral clinical practice specializing in musculoskeletal surgical oncology. Dr. Randall is also the Medical Director of the Huntsman Cancer Hospital Operating Rooms. The Sarcoma Services at HCI, because of its comprehensive experience in sarcomas, is continually developing and refining institutional based research and treatment protocols to improve the outcome in these rare but highly malignant conditions. HCI is a SARC participant and also is very active in the Children’s Oncology Group.

    Dr. Randall is a Professor of Orthopaedics and The L.B. & Olive S. Young Endowed Chair for Cancer Research. Among his academic responsibilities, he is chief of the Sarcoma Array Research Consortium (SARC) Lab, a laboratory investigating the molecular genetic mechanisms that give rise to sarcomas. In a joint effort with universities around the country, the SARC Lab is able to process and analyze donated tissue samples and report back to collaborators. The SARC Lab also has mechanistic experiments looking at genes involved in regulating apoptosis in sarcomas. Other areas of funded research include EGF modulated gene synchronization in desmoids. Randall developed the Sarcoma Advanced Research and Clinical (SARC) Fellowship. The Fellowship provides extensive exposure to tertiary/quaternary sarcoma surgery. The clinical experience includes the work up and management of the complete array of benign and malignant musculoskeletal neoplastic and pseudoneoplastic conditions, with broad pediatric and adult exposure. Basic, translational, and clinical research opportunities are readily available for Fellows.

    Randall came to Huntsman Cancer Institute in 1998 from The University of Washington, where he completed a fellowship in musculoskeletal oncology. He graduated from Yale University School of Medicine in 1992 and completed a residency in orthopedic surgery at the University of California, San Francisco. Dr. Randall's clinical and research efforts have been recognized internationally. Amongst his honors, he is the recipient of the Association of Bone and Joint Surgeons' Musculoskeletal Tumor Society Scholar Award as well as Best Paper Award and has been invited as an American-British-Canadian Traveling Fellow. He is presently President of the Connective Tissue Oncology Society, and a member of several national and international oncology and surgical societies including the National Comprehensive Cancer Network, Musculoskeletal Tumor Society, Children's Oncology Group, Interurban Orthopaedic Society and the Association of Bone and Joint Surgeons. He is a Fellow of the American College of Surgeons and is the author of numerous scientific manuscripts, book chapters and abstracts in the field of sarcoma surgery and biology.

    Never a DULL moment

     
    Something that started out as a fun get our mind of the surgury kind of day sure changed fast when the boys were fishing and looked up and seen the fire bigger then the house in front of us....



                                         I have to admitt I thought again why
                                         me?                            
                                       Why everywhere I go something is happening ? 


    Gave us a scare even packed bags to get out fast after that fire in Herriman 2 years ago we were going to be ready..
    Thank goodness it didn't come our way and the Firefighters did an AMAZING job fighting and protecting the houses..