Here We Go Again!

Ty has had a much better time this go around.  He has been busy and had a great week.  We are in a cycle where his counts are up a little.  We made a surprise visit to school to see his friends and teachers.  They were surprised and happy to see him!  He was doing well and we were able to go to the Block Party for a while and see his friends and play some games.  Overall he has had a great week.  It was good to see him with his buddies and laughing and happy.
So, a realization came to Sean and I as we were at the Block Party.  Ty wanted to climb the rock wall.  After some debate, we decided to let him.  Those of you who know our Ty, you know we call him Spider Monkey.  He can climb anything with ease and do it quickly.  So, Ty begins to climb the wall.  We realize how he is struggling to climb the wall.  He didn’t even make it a 1/4 of the way.  That was really hard to see.  His strength is just gone from his little body.  As parents it made us sad.  Here is our 6 year old boy who was always so full of life and now his body is just not there.  I know it will be there again one day, but so hard to witness.  I just want him healthy.  I know over the next 3 years his body will endure so much.  I pray each day that God gives him strength to tolerate this, but also for us to be able to watch and just encourage as he realizes that he has limitations.
We start the next round of the heavy dose chemo.  He will do a repeat of procedures.  They will put him to sleep, do a spinal, 2 chemos in his spine, then we check in for the heavy dose 24 hour chemo.  Again another thing very hard to watch.  We stay in the procedure room as they put him to sleep.  I can’t even describe the feeling and thoughts that go through as you watch your child being put to sleep.  Over the 3 year process that he will go though, he will be put to sleep over 20 times.  That in itself is a strange and scary thought.  I have had a lot of folks ask about the chemo.  Ty has periods of heavy dose chemo and will have heavy doses throughout the next 3 years.  He will take a chemo at home every night over the next 3 years.  The only time this will change is if he gets sick or if his counts go to crazy.  His blood counts will go up and down during all of this.  That is the reason he will not be back in school and will stay at St. Jude until they feel it is safe for him to be there.  This week gave him a bit of a break, but the counts being up is a temporary thing.
One other thing, I have to take a minute to thank all of the people who are praying, sending meals, cards, gift cards, and doing my yard.  You have no idea how much this is a help and blessing to our family. When we are home we really try to spend time focused on our girls.  They need our attention and love too!  I was able to go and see some soccer this week and our oldest made her confirmation and thanks to my sweet friend Rie, we were able to go.  She came and kept Ty for us.  I could go on and on but just know WE all consider all you do a blessing and we know the true meaning of community support.

2 Responses

  1. Rose says:

    You are a woman of amazing strength. I just read your last update and just can’t even imagine what one day must be like for you and Ty and the rest of your beautiful family. Thank you for taking the time to share. It not only helps us understand what it is like for you, but also realize it could happen to any of us. xoxo, Rose

  2. Elaine Kleinschmidt says:

    I am so glad that Tyler has you and sean as parents. I know and have seen how much each of you care for him and still your time to Lexie and Abbie. Thank god for you both. Love, mom

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