Monday, August 20, 2012

Pain, pain go away

Vacation is certainly over.  Ty is suffering.  He has been experiencing headaches for several weeks now, in fact I discussed it with his doctor at clinic two weeks ago, but it has been increasing in frequency and severity.  I am so sad and so sorry for him.  He cried so much today.  Sometimes he just screams for me from across the room and there's nothing I can do.  The only blessing in all of this is that they don't tend to last more than two minutes or so... but during those minutes time stands still.

I try so hard to heal him.  I put my lips to his head and I imagine transferring all of his pain so I can suffer through the headache.  It sounds silly, but I try to imagine sending healing energy and light from my forehead to his.  I whisper to him and I kiss him over and over and over again as I run my fingers through his hair as it begins to sweat from the pain.  I even starting softly singing the stupid song "pain, pain go away" instead of "rain, rain go away" because I thought it might make him smile.  It actually did :)  He thinks it's so funny if I pretend I don't know when I'm doing something wrong like that.  It never fails.  When Ty is sad, all it takes is a silly joke to turn him around and bring out his sparkling smile.  His belly laughs are infectious. 

I don't know what all of this means.  I don't think his shunt is causing any of this pain, and I certainly don't think it's cancer.  But I do think it's bullsh*t and I'm having a hard time expressing my feelings tonight.  I have been depressed and it's starting to take a toll.  His headaches bring down his energy and hinder his physical strength so any improvement in his arms and legs is at a standstill.  I am anxious because I worry that every day without improvement is lost opportunity.  I am making myself a little crazy.

Tomorrow we will be back at Sloan Kettering for his bi-weekly infusion for Avastin.  I'm sure we will discuss his increased head pain in detail, and debate on whether or not a scan is warranted.  We also have an appointment with a doctor of integrative medicine to discuss vitamins and supplements that we may be able to add to Ty's diet safely (he is a doctor at MSKCC so he is best suited to advise us on any contraindications while he is undergoing chemotherapy).  Tomorrow Ty also begins another 21-day cycle of Cytoxin and Accutane.  Two years this kid has been pumped with poison.  I simply hate it. 

But, on that same note it has been one whole year without evidence of disease.  So... I guess I can shout that in the face of cancer... HA!!!!!!!!!!!!! 

I should try and get some sleep.  Or, at least lay in bed until tomorrow.  Even after all this time, I spend my nights staring at his perfect sleeping face in complete and utter disbelief.  This just can't be real.  It just can't be happening to him... not to Ty. 


  1. I'm so sorry that Ty is having a hard time right now. He is such an amazing little guy - even when he is suffering he can make you smile. He is such an inspiration to all of us. I am praying that his pain ends soon and you can feel less depressed and anxious. I think you are so strong and I hope you give yourself a break and allow yourself to feel pissed off and depressed sometimes. It's natural. I think that Ty will help you get through it as he always seems to do. You are a such a good mom. Ty is lucky to have you.

    Please take care.

    Ann from Buffalo

  2. Im so deeply sorry that your family just keeps on suffering. It sadens me sooooo much to hear that lil Ty is in pain. I will always keep praying to God to completely heal lil Ty and no more pain and suffering. I cry as I think of how much your precious babyboy has suffered and is still suffering. May God please hear our prayers.

  3. Your pain must be as great as Ty's pain. Please know we continue to pray for all of you. We pray for wisdom for the doctors and all who work with Ty to discover what more can be done.

  4. I second what Ann from Buffalo said - I read this post while sitting at a red light and I started praying to god to give Ty a break. He is much too young to be dealing with this pain - and of course none of you in your family deserve what you are going through. Of course it's okay to be anxious or depressed - you wouldn't be human if you weren't going through a range of emotions. And as the good mom that you are I wouldn't expect any less of you then to be visualizing Ty's pain away - I think we all are visualizing it right along with you. Continue to stay strong - bless you all - hugs from across the miles - SuperTy always!!!

  5. My brother is across the street at NY Pres (complications from his cancer) and every time I looked out the window at Sloan Kettering I thought of Ty and prayed. Praying for strength for us all!

  6. It makes me so sad to read this today. This beautiful little boy doesn't deserve this. Please know that there are strangers like me out there who check your blog daily and pray each and every day for Ty. He will get through all of this...and so will you. God bless you all...stay strong...and know you have many people supporting you.

  7. Cindy, I am so sorry for Ty's head pain. I have a very strong feeling that this is nothing serious. I tend to be right too :) Thank you again for updating us. We can send more prayers and thoughts your way.

  8. My heart crys for you and your family and mostly for TY. I can't imagine having to go thru this day after day. I read your posts daily and I am so sorry that Ty can't just feel better. Knowing the cancer is gone is such a wonderful thing but the pain doesn't let you rejoice for long and you should be allowed to rejoice and sing for him everyday that he is over it! He is in my prayers every night , as are the rest of you.I pray that you will all get to sing and play and be totally happy again one day very soon. I pray for Ty to return to being a happy, HEALTHY, ablebodied child again and to be rewarded for all he has had to endure with an exceptional life from here on.I cry with you at every setback or stall in his progress,and then cry again with joy, for every good thing that you see happening for him. Please give him an extra hug and kiss for me.I think of him as one of my grandchildren,He reminds me of the youngest of them,Aiden,a happy entertainer.We call him Little Louie for Louie Anderson, always making us laugh even when he is sick.God Bless you all.Sending all my love and prayers and an extra hug for you Mommy <3

  9. I feel so bad Ty has been having headaches...I pray for his continued healing and your family for strength to get to the other side of this.
    Ty and Gavin are just ever so precious. Sometimes I wonder how you keep it all together but I know God is good and you will continue to gain strength to continue on. God Bless your family and let there be loving light where there is pain. Many continued Blessings to Your family.... and loving gentle healing to TY and many many more good days then bad. Debi