It comes and goes

Ty says this several times a day.  Several times an hour.  He's talking about his head pain.  It seems to be less severe, but it's always there.  Lingering.  It comes and it goes no matter how much morphine or oxycodone he is on.  It hurts just to admit in writing that my four-year old is even on such medication.

Cancer is relentless and cruel.  Even now, when he's cancer free, my baby suffers from more pain that I have ever known in my lifetime.  I always know it's starting up when he begins to sweat profusely.  Then he opens his mouth over and over again because, for some reason, this provides a little relief.  I guess it makes sense anatomically, if you think about how the brain stem is aligned with the throat, somehow opening the jaw may relieve some pressure. Whenever I look back on pictures of him as a toddler it makes me sad to see that he was doing this for a month or so before we had any idea how sick he was.  How could it be possible that something so grossly imperfect was growing within something so incredibly perfect.

Kayla, my sweet niece, painted this for Ty a long time ago.

How can I even sit here in this hospital room watching my son suffer like this?  No mother should ever have to do this. To watch how he is unable to voluntarily shift his head, move his arms, scratch an itch, wiggle his toes.  Countless people come in and out and offer him stickers, play-dowh, crayons, because they don't know that he can't do these things anyore.  Sometimes I wonder if anyone even has the capacity to imagine being in my shoes unless they've been here themselves.  I know I didn't until I had no choice.  I heard sad stories about others all the time, and of course felt sad.  But it was in passing.  I prayed for them and went on with my busy day.  Which is fine, I certainly don't want anything else, but it does make me feel good about writing this blog and sharing Ty's story more intimately.  Not because I want more sympathy, of course not (!), but because I think there is so much value in simply sharing.  Helping others understand that I am you and you are me and cancer affects everyone.  Even our children.  Together we are going to change this. 

I get through every day without too many tears because I have profound, undying hope that lies deep in my bones. It is everlasting and it brings me peace. I trust in God completely and wholeheartedly. During the times when that trust is challenged most, that is when I am at my weakest. When I free myself and remember that all of this is in God's hand, it always has been, I truly find peace. 

I just want to throw this out there that I do not judge anyone by religion or lack-there-of.  If you are reading this blog and care enough to follow Ty's story and wish healing upon my family then your heart is good and kind and I love you and thank you tremendously.  I call it God's will, you may call it something else, but we are all family and I appreciate any positive thoughts, prayers, healing energy, or scientific rationale that you send our way.  We are forever grateful to each and every one of you and we are so lucky to have you in our lives.  Ty has had an amazing impact and it gives us so much strength knowing how many lives he has touched.

Today Ty is adjusting to his final steroid taper.  Meaning, his dose was cut in half yet again.  Over the past week he went from 16 milligrams of dexamethazone per day to only three.  With each reduction in dose, his heart rate becomes more and more normal.  There is also an adjustment period where his head pain often increases until he gets used to the new level.  All of this is wonderful, because it shows that he isn't suffering from increased swelling at the brainstem when we lower the steroids.  It means we may have seen the worst effect from the radiation necrosis - hopefully. 

I bite my tongue, of course, because soft tissue necrosis, especially in such a critical area of the brain, is extremely dangerous.  The necrotic/dead tissue, unless surgically removed (which is not an option for Ty) only encourages new necrosis to begin as it cuts off the blood supply to the healthy tissue.  We hope and pray every day that Ty's body can naturally reabsorb the dead tissue in his brainstem before it causes any such ripple effect. So, although we are not out of the woods (are we ever, knowing that Ty's cancer can also relapse at any moment?), but things are looking good.

In the meantime, Ty is off treatment.  No chemo for a while.  We are focusing 100% on his physical recovery for now.  Besides, I believe with all of my heart that Ty has won his war with cancer.  Now we need to "stop the bleeding" and focus on repairing the damage done.  We hope to transfer to a new inpatient facility tomorrow or Thursday.  It's called Blythedale and I am very excited about it.  They are known to be very aggressive with physical therapy and I think Ty will do very well there.  It is also located just 45 minutes from home so I will finally get to see Gavin regularly.  In addition, we are trying to get Ty approved for daily hyperbaric oxygen therapy at Phelps Memorial in Westchester, and we will continue to come to Sloan Kettering every two weeks for his Avastin infusions.  We have a plan!  I feel good about it. 

Ty continues to talk about his friends at school several times a day. Makes me so happy and sad at the same time.  We look through the drawings they made for him and we talk about what they might be (a rainbow, a bowl of spaghetti, a truck, a flower patch).  We look through the photos that were taken while Ty was there and talk about his favorite preschool activities (snack time, circle time and the car mountain).  I want him to get bedda.  I want him to go back to school.  I miss those kids just as much as he does and I wish things were different.  That's all.