Tuesday, May 15, 2012

Big Day Tomorrow - bi-monthly MRI

It's here again.  Every two months Ty is scheduled for an MRI of the full brain and spine.  I know it doesn't seem like two months have passed because he has had a couple of brain MRI's in between, but Ty's last bi-monthly MRI in March was pretty much the last time he was feeling good.  It's when we made the huge mistake of feeding the trolls by bragging about how great he's doing.  When we were singing from the rooftops about another clean scan and showing off his progress by having him walk across the playroom for his nurses. 

My prayers for tomorrow are coming from the center of my bones because that's as deep as I can visualize my energy.  Lou and I are filled with anxiety.  I can't wait for tomorrow.  I am eager to hear that there are no signs of disease in Ty's brain or spine.  I want to know for sure that we should keep doing what we're doing, even if we don't get the answers we are longing for (meaning, if it's not disease and not necessarily radiation necrosis - what the heck is going on?).  Neither of us expect those answers.  Ty has always suffered consequences of medical anomolies that couldn't be explained with certainty, so why should this be any different?  I just want to know that we are doing the right thing by forcing Ty into the oxygen chamber every morning - kicking and screaming - and then following up with aggressive PT and OT that leaves him exhausted.  We are in this fight 100% and we are pushing Ty to keep at it day by day.  We need this MRI to reassure us that this is the right direction for him - at least for the next six weeks before the scanxiety starts setting in again. 

It feels like my shoulders are stiffly perched up above my neck as if I was just stabbed in the back.  There is a steady, throbbing pain just above my right ear - probably from clenching my jaw for days on end.  My clothes are uncomfortable because my skin is crawling.  Instead of my usual insomnia, I wish I could crawl back into bed on this rainy day and sleep through this dreadful feeling until it's time to leave for Sloan Kettering in the morning.  If given the chance, I know I would be able to do it... I can barely keep my eyes open as it is right now.  Please, please, no more cancer.  May it never, ever, ever, ever, ever come back.  May Ty navigate his way through a miraculous recovery and be restored to his full physical health. 

On the flip side of this crazy beautiful life, I am thoroughly enjoying three years old.  Gavin is just such a character and he makes me laugh every day.  He is so different from Ty.  Not just because Ty's three's were robbed from us due to hospitalizations, infections, chemo and radiation; but also because even when Ty had his good days, his sense of humor was always different.  Ty has always been verbally funny.  He likes jokes and teasing.  He likes to be entertained by others. Gavin is physically funny and much more independent.  He likes to tackle, make funny faces, hide in boxes.  This morning I found my cell phone in his tent.  He is simply unable to climb into bed with me and snuggle like Ty does, he has to go balls-out crazy under the blankets every. single. time.  Which is why we may keep the big goon in his crib until he's five :) 

The picture above was taken a few weeks ago when Ty was still doing okay. I see Ty in the corner of the photo sitting up straight and holding his hands over his eyes because there must be something scary on TV (and by scary, I mean the "door mouse" on Team UmiZoomi, or "La Bruja" on Dora the Explorer).  Now Ty can only hide by closing his eyes.  It's sad.  Lou and I were with him at Blythedale the other day and he was teasing us by closing and opening his eyes.  "Where's Ty?" we would pretend.  He would smile big and then open his eyes so we could act surprised and say "Oh!  There he is!"  I know he doesn't really think he is disappearing and reappearing, but goofing around like that are the things that makes Ty laugh.   

Ty calls his little brother a "lunatic" and it makes them both laugh.  I love how they love each other.  Ty woke up feeling very sad today.  He was crying and crying.  He was in pain.  Gavin crept over to see Ty and he was caressing his legs and feet gently.  He was saying "Oh, Ty."  It was beautiful and gut-wrenching.  My Gavin may be a crazy little man, but he has a heart of gold.

Ty has been very, very emotional.  And, he has been in a lot of pain.  He is very physically uncomfortable because of the muscle spasms and tightness in his neck and his limbs.  He flinches and cries out every time I move him in the slightest.  After several days of this, I finally broke down yesterday.  Here's why.

We took a trip to the candy store for the first time in a while.  Several weeks ago, one of Ty's amazing teachers made him a book filled with photos from "CandyWorld" at the Danbury mall.  Yesterday I decided to surpise Ty after therapy with his first trip to the real Candy World.  It was exhausting but it made him very, very happy.  We spent almost 1/2 hour in that tiny store just marveling over the candy :)  At the mall I had to use the fold-up wheelchair for the first time, but it doesn't provide enough head support so I had to hold his head with one hand while steering with the other hand.  It was my first time putting Ty in a wheelchair outside of the hospital and I could barely hold back the tears from the constant stares.  I don't think I'll ever get used to that. I felt so protective, like a lioness, and I just wanted to yell at everyone.

When we got back to the car I was simply spent.  Lifting Ty from the chair back into his carseat - and I was sooo careful - resulted in him screaming in my ear for the hundreth time that day.  In all honesty, I wanted to yell at him.  I wanted to tell him to "shut up!"  I didn't, but just feeling that way made me feel so tremendously guilty and weak.  I got in the front seat and just started crying even louder than him.  I started yelling at him how sorry I am that I can't fix it.  I told him that I wish I could be a better mommy, that I wish I could fix it so it didn't hurt anymore, that I wish I could fix everything.  I was tired and emotional.  I am embarassed of my behavior but I'm only human. 

I can only compare it to when my boys were babies.  When I was a sleep deprived mom to newborns and at times I just wanted to yell at them to stop crying.  I think most mom's out there can relate to these feelings.  These are not proud moments, but it is only natural to be vulnerable sometimes.  Parenting is exhausting.     

Some people are just sick in the head.  That's a phrase I can hear my Dad saying, "He's sick in the head, I tell ya, sick in the head."  I was recently notified about a facebook page that was created where a grandmother and mother were asking for money to help them care for their three-year old girl who was recently diagnosed with cancer.  I was told that it was suspected to be a hoax and asked to say something about it on Ty's pages to help speak out against them.  At the time, I didn't have the energy to look into it.  I didn't want to be an advocate against scumbags that day.

Then it happened again yesterday.  I saw messages all over facebook about a cancer mom who had just been killed in a car accident.  Warrior Eli's family had maintained a caringbridge for over a year.  They had posted photos of a bald-headed "Eli" and his siblings.  They set up a donation page that was supposed to be redirected to Alex's Lemonade Stand - a highly reputable foundation that funds children's cancer research.  Well, it was all a hoax.  How disgusting.  For the first time since Ty got sick, I became disgusted with how cruel people can be.  I'm happy to say that my entire cancer experience has been otherwise filled with love and prayers from friends, family and strangers around the world.  This story is discouraging, but won't change how grateful I am for the real community who has come together for these kids.


  1. I just want to tell you how sorry I am for everything that you and Ty and your family are going through. Noone deserves what you are having to endure and I am praying for Ty every day. You should not feel one bit of guilt for having a melt down. I'm surprised you don't have them more often. You are only human and you have to give yourself a break. I'm sure that Ty kows what a wonderful mom you are. Your feelings of helplessness are so normal. I think any mom would feel the same way. We feel our kids pain like its our own and Ty has suffered more pain than anyone should have to have in their entire lives. Please try to stay strong and I am sending out positive thoughts for good results tomorrow.

    Ann from Buffalo

  2. How you share your pain makes you the person you are and one that I admire. Keep the faith.

  3. The fact that you held up this long...is like Amazingly unbelievable if this is even a word!??...LOL...I have 3 healthy children and feel so frustrated at times I could get in the car and run away! How amazing are you?? Please dont ever beat yourself up...its an awful situation and any reaction you have at any moment you have should never ever ever be judged! Nobody walks in your shoes...and nobody knows what you are going through! Prayers for strength and better days are on there way!

  4. A great big warm hug to you Cindy. Be in the moment. Take a good magazine and a warm blanket, and curl up for 10 minutes when the boys are watching TV....Enjoy the moment. Tomorrow will come tomorrow. Just give yourself a break now.

  5. A better mommy? How on earth could you be any better. As a mother myself I am in awe of your strength and poise. Ive been reading this blog for over a year now and I admire you. I wish you light and love and pray for Ty's recovery. Your little boy is in so many peoples hearts. Mine included ;)

  6. This update just made my heart break for you. You are an amazingly strong woman and a wonderful mom to both of your boys. I certainly can understand how frustrating you must feel when there is nothing you can do to help your little boy. Your feelings of wanting to scream are totally understandable as well.
    I continue to pray for Ty's full recovery and ask Him to please give you some rest, strength,and peace as well.
    I will be praying tomorrow for his MRI and ask Him to please wrap His arms around all of you tomorrow as you await the results. God Bless.

    COLE's Prayer Team

  7. Cindy you are an inspiration to me. I read about Ty often and keep your family in my prayers. You are a wonderful mom who needs to vent more often then you are allowed. Stay strong and know that many are behind you and bel
    eive that you and your husband are doing the best you can for your little guy. I pray the MRI test tomorrow shows no cancer and pray for a full recovery for Ty. Your a great mom Cindy! Know that God Bless you and your family

  8. you are an inspiring woman.

  9. I can't tell you how many times over the past year (and longer) that I have thought "wow, this woman is unbelievable...the patience of a saint!". I don't have a single clue how you do what you do, how you endure what you do, on a daily basis. You have the right to daily,emotional outbursts like no one I know! As lucky and blessed as you are to have Ty...so is he, to have you. I pray so, so hard that Ty's scans remain clear, he continues to improve, and that someday all of this crap is worth it because he is a healthy boy/adult.

  10. Super Ty gets his miraculous strength from his amazingly strong mother... He continues to fight because you and his loved ones give him reason to. You are all in my prayers, in the center of my heart. Forever and always!

  11. Please try to be easier on yourself. I don't honestly know how you are doing this. We all have moments with our children that we yell or melt down and then feel horrible a second later. Our kids forgive us and most likely forget about it within the second or two it takes to make us feel guilty. I honestly don't know how you are doing this. Your strength is amazing. Good luck tomorrow and as always my thoughts and prayers are with you, Ty and your family

  12. I have been reading your post every day for over a year now. I am in awe of you as a person, mom, and wife! You amaze me at how you're so positive and how much you love your little boys. Ty and Gavin could not have a mother any better than you, you inspire me to be a better mom! As always, so much love and prayers for Ty and your family

  13. Cindy,
    I have also followed your posts for awhile now, always praying for you and your family...always, but I haven't had the courage to post until now. You see, I am a new Catholic...fully communed this past Easter. Your unrelenting faith in the midst of of every Mother's worst nightmare has continued to show me the strength and comfort faith can bring to the most heartbreaking circumstances. Please remember the Holy Trinity as you pray and trust in the comfort that the Holy Spirit will bring to you and Ty as I will continue to ask that the Holy Spirit fill you in your darkest of momments, to fill you and Ty with peace and comfort!
    I have tremendous found comfort in words spoken by Fr. Leatherby....he is local to Sacramento, CA and has different topics available for free downloads, even in MP3 versions so you can just listen as you drive. I am pretty sure that you don't have time to read right now! Just google him and his parish site provides the info you need.
    May God Bless Ty always!

  14. Lord hear our prayers.... mother Mary I ask you to please give your strength to the parents if Ty... and Jesus please put forth your healing hands.... bless this family with healing miracles .... heavenly father you gave your only son for the forgiveness of our mortal sins .... please let Ty's cancer be thrust upon the devil.... give him health and Wellness in its place.... let him begin his life so he may thrive and touch others with his sweet personality.... let this be his time to show the world that you are the strength, the light and the giver of miracles..... Amen .... xoxo ......

  15. You are a tough mom. All fighters break down and cry, it is okay. YOu and your family are often in my thoughts. Ty and Gavin are blessed to have a great mom like you!

  16. as always (daily) I pray with all my heart and soul to God that everything goes perfect and that lil Ty receives another miracle I pray that lil Ty only gets better and better and he only moves forward!!! All my thoughts and prayers are with lil Ty and your family.

  17. Prayers & peace to you & your family

  18. I work in Danbury, CT. I wish I was at the mall that day so I could have greeted Ty like the rockstar that he is and made you feel a little more comfortable in our town. I have been following Ty's story for some time now and pray for him and your family regularly.

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