Thursday, May 26, 2016

Welcome to Survivorship Clinic!!!!!

Today is a good day. A monumental day in my life that I never dreamed would happen... but have looked forward to so long. Funny how life is never what you expect - yet God is there and works in amazing ways. Today - my son Tristan started his first day of "Survivorship Clinic"

It was so amazing to have each new doctor and nurse practitioner welcome us to Survivorship Clinic. They just kept smiling and saying welcome! It was like we just entered the winners circle of a long long race. The race that most of you have cheered us on and encouraged us to finish! I am forever grateful for each and every one of you and how you have been there for me and my little boy!

I came home and pulled out my external hard drive to gather some pictures to share and found a treasure I had forgotten about. I had posted to my online friends every day and blogged. And I have them and all the comments printed out. Starting with the first day when I posted... Here are just a few snippets into that ...

Oct. 20, 2007
We are in Children's Hospital where my son was just found to have Leukemia (a.l.l). We are just beside ourselves.

Oct. 22, 2007 ROMANS 8:2 and ROMANS 8:11
Tonight we wait. Tristan is going to do fine.  God is going to get us through! I know people everywhere are praying and I cannot stress how much that means to us. Thank you! 

Oct. 24, 2007
Wednesday Night...
Tristan's counts are down. His immune system needs to be over 500 or we are not allowed out in public and he has to wear a mask around others. Well... his was ... ZERO! Nada. So that means he has no immune system right now. So he really wanted to go to the playroom. Which was fine. He wore a mask. He did so well! I have pictures but the computer system is messing with me and not letting me upload to snapfish today. Bummer.

Well we went. When we came back he started flipping out about his leg hurting him. He just sobbed and sobbed crying "Kray for me mommy Kray for me" he does not say Pray. So I did. His leg hurt so much. One side effect is joint/bone pain. Well he got it in his leg. So he cried for a while and we got him some heat to put on it. A warm pack. now he is munching on goldfish crackers and happy as can be. But it was so hard to see him hurting with nothing I could do for him. He could not get tylenol because it was not time yet. 

And I read and read.. and looked through pictures... It seems like a lifetime ago!

Here are a few pictures from the beginning...

 Tristan changed in his looks every month!!! He had to take so strong of steroids that this was just two weeks apart! And then he would cycle back down again. I had two sets of clothes for him. His steroid times and his not. I felt so ashamed that the first time he changed... I cried. And I cried more because I felt awful for feeling the way I did....

 When we would be in public and he was eating three times the amount a grown man would - and people would stare - and one old lady told me it was a SHAME... I cried. Because they did not know that it was keeping my son alive! Please never judge. You do not know.
And then he would go back to normal. It was easier once the first time was over. I knew my little baby would be back again. It was not just looks but he could not sit up. If he fell over we had to get him up! It was sooooo silly sad. Broke my heart a million times over as he huffed and puffed in his little Buddha body.

And he took LOTS and lots of medicine... by mouth, by spinal fluid, by mediport... 
And the medicines made him sooo so sick.

And my friends prayed... and sent encouragement: "B>than Cancer!"
 And our dear friend Philip struggled with Tristan battling All Leukemia! What troopers they were!

And friends prayed and threw us benefits and supported my family every step of the way! We are so blessed!

... and now we are here 8 and a half years later... almost 9. years. later!...

And God is so good to us! Here he is pointing to his paperwork (I know it tells him he needs an EKG and Echo but the top! the top says "Survivorship Clinic!"
 Dr. Jean Tersak MD has been his treating Oncologist the entire time. I am super excited that she is also the Survivor Oncologist. It is fun to reminisce with her. Everyone especially likes to talk about how old Wyatt is because I got pregnant with him shortly after.

So here we are. We had a lot of educating done today. We talked about everything he had done and all the Medicines he took. What effects they will have on his future.
From Decadron that could cause Cataracts and Osteoporosis and how he will be checked for bone density at age 18. To Doxorubicin that can effect his heart. He has to get EKGs and Echos every 5 years. 
And Mercaptopurine that could make someone not have kids so his hormones will be checked at 14. 
From Asparaginase, Cytarabine, Cytoxan, Methotrexate, Thioganine and Vincristine... we talked about it all. 
From Blood tests to Neurocognitive Testing... we discussed his future. And it was good. Because we KNOW that God is in control and has had his hand on my baby so very long.

When he was first sick - my faith was strengthened by a phone call from my dad. I was still in the hospital staying with him and dad had a vision he just knew was from God. Seeing Tristan as a man. I stood on that promise and had faith. I know God has great plans for my son. I am so very thankful for the blessings we have had and where he is going to be in the future.

I am also so dearly and deeply moved thinking of each and every one of you who helped me through. I cannot express this enough! A million times over. You guys were our rock! I knew you were praying us to this day!

Thank you from the bottom of our hearts. Thank you.


  1. Congratulations!! God is good!!

    Lots of memories . . . it seems like just yesterday and at the same time like a long time ago. Wonderful to see how God has continued to answer prayers and heal and protect, and how Tristan is growing into such a great young man. I'm sure your survivorship story will be an encouragement and blessing to many others. :-)

  2. I try to talk to every parent at clinic - especially the sweet bald stage ones. You know they are active in the battle. And I want to hear how they are and encourage them!