So tired

Wow.  Commuting to the city for daily radiation is exhausting.  Not so much for Ty who sleeps there and back and then again on the couch after we get home (due to the after effects of his daily anesthesia), but I am totally pooped.  We have to get up very, very early because all of the babies get radiation first, which means the appointments are around 7AM every day.  We have a pretty long drive and I feel very drained.  I have a feeling, though, that this is going to fly by.  I am so, so  anxious for him to get off steroids and begin feeling better.  I keep thinking "just a few more weeks!"  I think I might be more anxious now than I was when I was waiting for his due date (but I'm not sure because that was pretty damn exciting).

So many special things happened today, but I don't have the energy to share this evening.  I know you understand and I will be sure to share more tomorrow :)  Thank you so much for always checking in on my Ty and for caring so much. 

Here is a photo I took this morning while we were waiting to see his doctors.  I know I say this all the time... but look at those dreamy eyelashes! 


Comments

  1. AnonymousMarch 9, 2011 at 10:21 PM

    I know you are told all the time to keep hanging in there...but hang in there. You are an amazing mom and with you behind Ty all the bad things are in for one heck of a fight. I prayed throughout Ash Wednesday mass for you to have the strength to keep going and for Ty to keep up the fight. Your little boy is beyond precious.

    ReplyDelete
  2. Linda Scruggs RN, BSNMarch 9, 2011 at 10:58 PM

    I can't begin to imagine what you are going through...but I do know how difficult it is to drive to MSKCC for treatments, fight traffic, when it's so exhausting. Has anyone suggested trying to get in to Ronald McDonald House just while the daily radiation treatments are going on? I think it's over on E 73rd and from what I remember, can only be requested through social work @ MSKCC. I know there is no place like home, but it's just a thought. Your amazing family and your beautiful sons are in our thoughts every day. Ty is a fighter!

    ReplyDelete
  3. Joy MarielleMarch 9, 2011 at 11:15 PM

    Praying for your family, always.


    Joy Marielle
    Baltimore, MD

    ReplyDelete
  4. maryeking83March 9, 2011 at 11:35 PM

    We are praying for you Ty, we always are. Rest well tonight sweet baby tomorrow is a new day.

    ReplyDelete
  5. AnonymousMarch 10, 2011 at 3:40 AM

    http://www.mskcc.org/mskcc/html/2942.cfm

    This is the link for the Ronald McDonald House, it is $35 dollars a night.

    Thinking of you all, stay strong !!

    Spring is in the air!! YAY!!

    ReplyDelete
  6. D. CastellanoMarch 10, 2011 at 12:44 PM

    Just sending you warm wishes and strength.

    ReplyDelete
  7. AllieMarch 10, 2011 at 12:53 PM

    Those eyelashes are truly awesome. Sending prayers your way!

    ReplyDelete
  8. maryeking83March 10, 2011 at 1:44 PM

    Please send me a PO box I want to send sweet baby Ty a care package. He is sooooo loved.
    maryeking83@aol.com

    Stay strong,
    Mary King, and the rest of the King family
    GA

    ReplyDelete
  9. Nate's mommyMarch 10, 2011 at 1:55 PM

    I have been following your story since AOL had the parentsdish article on their news feed. Your blog is in my favorites, and I check in on Ty every night as soon as my little ones are in bed. I have a son, Nathan, who is one month younger than Ty, so it all sort of hits home... tears flow at every new blog (That's what I do... I cry...happy or sad). Ty is a beautiful, strong, and incredible little boy. You as a mom are truely an inspiration to me. I think of you and your family mutiple times everyday and I pray that you have continued strength, patience, and positive outlook. I think about you when I am totally wiped out at the end of the day from working and being a single mom of 2 kids under 3...I stop and I have a reality check and I count my blessings. YOur faith and endurance are such an inspiration. I will continue to pray for you guys! You, Ty and your family are often on my mind and always in my heart. ((Hugs from Arkansas))

    ReplyDelete
  10. MariaMarch 10, 2011 at 2:22 PM

    Greetings from IL -

    Thinking of you all and continuing to follow Ty's fight through your amazing blog. Thanks again for taking the time to share this very personal journey. Love and prayers from my family to yours

    xoxoxo,
    Maria

    ReplyDelete
  11. Colleen RosenMarch 10, 2011 at 2:44 PM

    He's dreamy with those eyes, you poor pooped thing. Try and get some good sleep as a priority. I can't stand knowing how tired you are. I would be the worst cancer mom ever. We'd miss the radiation treatments. Oops! Mommy overslept again : /

    ReplyDelete
  12. AnonymousMarch 10, 2011 at 3:03 PM

    first of all I want to say Ty is one of the most beautiful little boys i have ever seen.
    I've been fallowing his story since reading about him on AOL. Every day i hope to come to his page and read "he's cured..it's gone!"
    even though I don't know him personally I am sending my love and prayers his way.

    ReplyDelete
  13. UnknownMarch 10, 2011 at 3:25 PM

    I work for the Make-A-Wish Foundation and I check your blog every single day. Reading about Ty’s wish was so magical to me. It's what I get to create on a daily basis for children. I pray for Ty all the time. His story is inspiring and his battle is so courageous for someone his age. Keep fighting and be strong. Ty has so much love and some very wonderful parents. Thank you so much for sharing your story and know there are so many people thinking of him. Those eyelashes are something….. 

    ReplyDelete
  14. TraceyMarch 10, 2011 at 8:06 PM

    His eyelashes are dreamy. He's so sweet and innocent. Praying for him everyday. Hugs and kisses :)
    The McCarthy's

    ReplyDelete
  15. UnknownMarch 10, 2011 at 8:43 PM

    Thinking of Ty many times of every day. Super Ty, Super Mom and your family have truly touched me and my family. I wake up each morning thinking to see any news of Ty, you and the family. I pray for Super Ty and your family each morning and all nights.
    I want to send something to you and to Ty but I don't know how to get your address or e-mail.
    God bless from PUERTO RICO

    ReplyDelete
  16. LovieMarch 11, 2011 at 7:20 AM

    Hello,
    I was introduced to Ty and your family's blog last night via a co-worker, as we work the grave yard shift here at a hospital in Manhattan. As she was discussing the story, I thought of the world renowned
    Pediatric Surgeon;
    Dr. Benjamin Carson and his awesome Pediatric Neurology Team over at John's Hopkins University in Maryland. Please look into that possibility, remember God is an awesome and on time God :]

    ReplyDelete

Post a Comment

Popular posts from this blog

Our baby is finally free. Rest in peace Ty Louis Campbell.

Image
Ty Louis Campbell is gone, but his story continues.  This is our promise to him.  His impact on the world around him gives his short but inspirational life such meaning.  His soaring spirit will continue to fuel a fire in our hearts, and strangers around the world will continue to fall in love with the little boy who fought so valiantly.  The little boy who hurt so much, but maintained a bigger, brighter smile than the healthiest of children.  Ty never did break his fever.  He never really woke up.  Not until he decided to leave this earth and fly freely among the clouds.  At that very moment, he was awake.  He had returned to Lou and I to say goodbye.  To say our hearts are broken would be like saying it tickles to have your stomach ripped open with a spoon.  I went to bed last night with so much worry on my mind, but I was able to fall asleep because I was calmed by the fact that in his semi-conscious state, Ty seemed so incredibly peaceful and comfortable.  I laid down next
Read more

Anything but cancer

Image
Cancer is not welcome here.  It can never, ever, ever, ever, ever come back.  As I mentioned yesterday, Ty has been showing some physical symptoms that we haven't seen in a long time.  Please, God, don't let it be cancer again.  Anything but cancer. I spoke to Ty's doctor first thing this morning and he believes the increased weakness we are seeing on Ty's left side is not related to new cancer growth - but that doesn't rule out the possibility.  He feels that Ty is suffering from spasticity, which is becoming more visible now only because Ty is getting stronger.  As Ty's muscles begin to regain mass and tone, the neurological weakness on his left side is becoming more noticeable.  This spasticity is likely permanent, but also treatable with continued therapy.  When I spoke to his physical therapist later today, she agreed that it would explain what she is seeing, and then she reassured me that walking again is still a highly attainable goal for Ty.  And "
Read more

Our aching hearts

Image
My face is swollen.  My eyes are heavy.  I have been crying for what feels like an eternity.  But in between my tears, I have an overwhelming sense of freedom.  Today we were told that there are no more treatment options for Ty.  That his MRI Saturday night shows progressive lepto-meningial disease in three different areas.  Lou and I decided against surgery to fix Ty's shunt, and I am finally free from feeling responsible for whether or not he lives or dies.  Ty is in God's hands. No matter how many times I swore that I leave Ty in God's hands, I was always clinging onto him with every ounce of my being.  Researching.  Fighting.  Begging.  Doing anything in my power to find a way to save him.  Finally, I have exhausted my options and I am letting go.  I may be kicking and screaming, but I am still loosening my grip because I know that I have to.  We have tried so hard, for so long.  Ty's doctors and nurses, they are so special.  They have given us beautiful. prec
Read more