Sunday, October 23, 2011

The brightest star in the sky

On the night before Ty went to the hospital for his very first surgery, Lou and I took him down to the beach at dusk.  The weather was a perfect, mid-August night with a beautiful breeze, an amazing sunset, and calm, rhythmic waves.  It was one of the most depressing nights of my life.  I've probably written about it before, but it has been on my mind alot lately so it bears repeating. 

Ty was already showing signs of the tumor.  His speech was slurred, he was drooling, and he suffered from headpain.  All three of us were very quiet and there was a numb sadness around us.  Ty seemed to be particularly heavy.  It was as if he knew why we were on the beach that night, trying to enjoy one more beautiful night with our beautiful boy before officially entering the horrific world of life after cancer. When the sun set, we looked up in the sky and I asked Ty to pick out a star that we would designate "Ty's Star".  Of course, he chose the north star - the brightest star in the sky - and it couldn't be more appropriate.  He certainly is the brightest star in the sky, and I am sure to point it out to him whenever we are looking up in the sky together. 

I can't tell you how many times I stare up at that star and wonder if that will be where his spirit lies in the future.  If I will be talking to and praying to that star every night; or if it will instead symbolize his awe-inspiring life here with us instead of his unending life after death.  I hope and I believe it will be the latter.  I won't ever look at a starry sky again without thinking about Ty and his amazing fight. 


I haven't written for several days, mostly because we have just been so busy, but also because I haven't had the energy at night.  I have been doing really, really well - we all have - but there are still some nights when I can't shake the sadness.  In the past I would turn to writing about the day to make me feel better, but lately I can't find the energy to write/talk/read... anything.  Tonight I was thinking about how many people have reached out to Ty lately to show support, and I realized that I need to stop wallowing and share a detailed update, so here it is.

Ty's current health
Yesterday was a very exciting day at the hospital, but first I will share the less exciting details.  Ty is borderline neutropenic.  His white blood cell count has dropped to a dangerous level so I will be keeping him home from preschool (and just about anywhere) until his CBC shows improvement :(  He has a slightly congested cough, but the team wasn't too worried about it for now.  However, if Ty runs even a low-grade fever, we will have to be inpatient at the hospital for several days.  Fingers crossed that doesn't happen.  This has been the longest stretch we have ever gone without spending a night in the hospital (by a landslide, three months+) and as much as we miss our amazing nurses over there, we want to avoid going back there at all costs!  The good news is, he gained .3 kilos (about 1/2 pound). 

The advantage to daily chemo (every day, twice a day instead of one huge dose at the beginning of the month) is that the medication is only in his system for 24 hours or so, and the doses can be adjusted so he takes less when his counts are low to allow his blood/bone marrow to recover.  Yesterday we lowered the dose of his daily chemo and his doctor expects his counts to jump right back up again within a couple of days.  When he had high-dose chemotherapy infusions, that was much different.  When his white blood cell counts started dropping there was nothing we could do to stop it.  His ANC (absolute neutrophil count) became dangerously low every time.  He has had GCSF shots, but those don't work immediately either, so poor Ty ended up with an infection every single time because his little body couldn't fight the germs.  This time it will be different!

Big Apple Circus
Ty's neurosurgeon recently gave our family tickets to join him and several other patients' families at the Big Apple Circus tomorrow.  We thought we were going to have to cancel and I was so bummed, but after talking to Ty's doctor I was told it would be okay to go.  Given the fact that we will be in an area with a large group of children in the same condition as Ty, lots of precautions will be taken and Ty can wear a mask so he can still enjoy the show.  I am so excited for him!   

The show is tomorrow at noon.  Gavin will be with us, and I know both boys are going to absolutely love it.  They are so lucky!  I will be sure to post pictures ASAP.  Afterward we will be going straight to Aunt Debi's for one of Uncle Rich's amazing dinners and, of course, football. 

NBC!!
I hate to put the cart before the horse, so I will only share a few details...  A news crew from NBC was at Sloan Kettering yesterday to interview Lou about the upcoming marathon.  Ty was on camera, too.  We knew this was planned, so I brought a package with me to the hospital to bribe Ty.  It was something that came in the mail and it was so beautifully wrapped (I had no idea what was inside) I decided it would be the perfect thing to get Ty excited about the cameras.  It worked really well and he was SUCH a good boy.  The incredible gift, it turns out, also had me in tears!  (Lorraine and Kristin, we never met but I am amazed at how we are connected!!)  Thank you. 

After the interview, Ty became really tired.  The hospital is always so crowded and we didn't have a bed assigned because his infusion was only suppose to take an hour or so.  Instead, we had to sit on a couch in the waiting area while Ty received his Avastin - this is the usual.  Also, since he had a cough Ty had to wear a mask and he wasn't allowed in the playroom to protect the other children. 

This became a bit of an issue because the child-life specialist for the neuro-oncology patients had planned a belated birthday party for Ty that day.  Instead of celebrating in the toy room, I was told his doctors and nurses would have to bring the party to us.  Well, I am embarrassed to say that Ty was NOT a good sport about it.  I mean, they came over with a huge poster for him, a pile of presents and a cake and all he did was yell and cry and send them away.  Oh boy.  What can I say, it happens.   He had a long day and he just wasn't in the mood no matter what.  I am posting pictures that his nurse took afterward, though, to prove that he just needed a little time and a little less attention in order to enjoy the gifts.  Thank you so much to all of his doctors and nurses in neuro-oncology :)   And to child-life who pulled together the surprise party for Ty, it was all really very thoughtful.  I wish Ty had been more appreciative at the time, but here are the pictures to prove that the thrill of the birthday celebration wasn't completely lost ;)



By the way, before I end this post I want to point out that Ty is wearing jeans in the above picture.  This is huge.  This is the first time we've gotten him out of his sweatpants and into some more normal clothes in forever.  And the trend continues!  Today he wore corduroy pants.  He is getting bedda!  Goodnight everyone.  Thank you so much for all of your prayers, positive thoughts and unending support. 

4 comments:

  1. He IS getting bedda... I can feel it in my heart.

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  2. Ty is for sure a shining star! I hope the boys enjoyed the circus, they both deserve it.

    Glad things are still going well for Ty. He has loads of people who care and love him.

    Love,
    Jan
    Georgia

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  3. What a great picture of you and Ty! Glad to hear that his anxiety from being overwhelmed turned into joy. All kids have those moments...welcome to NORMAL! :)

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  4. As always I pray for lil Ty and your family daily and I absolutely LOVE to read the wonderful things (always with tears in my eyes) I feel overjoyed to hear and see lil Ty feeling better and getting better. To the most amazing, loving mother and family...God bless you ALWAYS!!! xoxoxoxo

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