A week filled with chemo, platelets, and a full meltdown.

This week has been an interesting week.  We started off the week with very low blood counts.  This is all normal.  Dr. P told us we were going to stay the course that we are on.  Finish the at home chemo for the Induction phase on Wednesday night.  So, on Wednesday night we finished the chemo for the first phase.  We signed papers for the next phase of treatment.  It was a lot to take in during the “talk.”  We were told about each phase of treatment and how it would affect Tyler and his little body.  We were also told that over the next 2 1/2 years he would have 11 more spinal taps and a few more bone marrow draws.  A lot to take in, along with learning about all the chemo and treatments.  WOW!

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The next phase of treatment will not begin until Ty’s levels come up a little on their own.  We had more blood on Wednesday  night and by Thursday were told that Ty needed platelets again.  His were at 21. ( FYI, the “normal” is around 300.)  So, it may be anywhere between 7-14 days before his levels come up on their own.  They will watch him closely.  His HGB level is low, but not quite ready for a transfusion.  We will go again on Friday and Saturday and we will see what the blood work shows at that time.  For the next phase of treatment, it will be an 8 week treatment.  Ty will take at home chemo for the entire  8 weeks nightly.  He will also have the phase where we will check into the hospital for 3-5 days at a stretch and have IV chemo and fluids.  They will monitor Ty very closely to watch for any issues that may come up. This will go for an 8 week cycle.  We will go in, stay, go home a week or so, go back and repeat over the 8 week time frame.  Again, WOW!  It is so much for his little body to go through.

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So, Ty had some visitors today at St. Jude.  Aunt Sissy, Alyssa, Luca, Abbie, and Lexie all came to support Ty today.  He had a needle change and platelets, so he really enjoyed the company.  Luca came to the house to sit and play with Ty for a while.  He has really missed his cousin.  After he left, Ty decided that he had enough and had a full down and out melt down.  It was hard seeing him like this, but I think he needed a good cry and he let out all of his frustration.  We just let him cry and get it out.  When he was done, he was back to my sweet little buddy that he normally is.  I am just the mom and watching him  go through all of this.  I wish I could go through it for him.  I wish I could wave a magic wand and take away his pain.  He is such a strong kid.  He’s tough.  He will get through it.

4 Responses

  1. Carl & Pattie Waelde says:

    We have spent a lot of time thinking of all of you guys..BIG BIG hugs to all.

  2. Aunt Cathy says:

    What a good mom you are Michelle ! I hear your pain to take it away from him. He is in good hands with you and Sean. God bless you all. We love you and so sorry your family and esp. Ty is going through this. Aunt Cathy

  3. Elaine Kleinschmidt says:

    Hey man I will be coming to see you soon. Can’t wait to give you a big hug. Keep smiling, Mimi loves you.

  4. Claire Segarra says:

    Hey Ty. I was so happy to hear Luca got to come and play with you. That was awesome. I’m sure he’ll be back soon. Stay strong. Love you.

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