Fear, doubt and anger
Despite the fact that Ty had another amazing, pain-free day (two in a row!!)... I have been carrying a huge weight around all day. I can't seem to shake it. Every time Ty says something sweet (like when he told me I look "pwitty" today) my eyes well up with tears. I am so afraid that I won't have good days like this for such a long time once we check into the hospital on Thursday. It took so much pain and suffering for him to get here, for him to finally feel better. I can't help but have my doubts about whether or not we are doing the right thing. I can't help but fear the biggest fear of all. I can't help but get angry over last week's results. He has come so far, we were supposed to be approaching an end to all of this. Instead, this feels endless.
As I've always said, I will happily do this for years upon years as long as Ty is cured of his cancer, but what about him? How many more hospital stays can a 3-year old handle before his motivation starts to decline? I already know the answer and I'm sorry for even taking this in that direction, but I am sad and I don't want to see him sad even for one more day. I know Ty is amazing - he is SuperTy - and he never ceases to amaze me. I'm sure he will take this on like the little champ we all know and love. Aargh! I'm just so mad that he has to.
A damper to an otherwise beautiful day
Instead of traveling all the way to the city for some pre-chemo testing, Lou called our local Putnam County Hospital yesterday to explain Ty's situation and to see if their lab can handle the bloodwork. He told them that Ty has a mediport, and that he needs to have blood drawn as part of the advance screening prior to chemo. They said they could do it, no problem. The doctor ordered a 24-hour urine test followed by bloodwork. Yesterday I rushed over there to pick up the special "pee-pee can" for Ty at 6PM and I was told to come back the following day at 6PM to drop it off and to get his bloodwork done.
When I got there today it was just after 5. Gavin was asleep in the car with the babysitter. It should only take a minute. Unfortunately, when we entered the room I was told that the phlebotomist was not licensed to draw off the mediport line. That she would have to stick him in a vein. "But, my husband called you... you said you can do this off the needle that is already in his shoulder??..." No. They didn't recall that conversation. Apparently, they don't have any nurses on staff in the lab, and NY State requires that a licensed nurse draws off the mediport. "Well, this is a hospital, right? Can't we get a nurse in here?? He is a weak baby and finding access to a vein in his arm is not going to be easy - trust me!!" I asked them to put themselves in my shoes. That he is three years old and I promised him up, down and sideways that he would not get any needles today. I explained how important it is that he believes me and trusts me through all of this. How I always tell him when something is going to hurt and when it isn't. I was crying and yelling! They looked at the bald spots on his head. They stared at the scars. Then they asked me to be patient while they tried to find a nurse who could help out. More than one hour later, I was told no one was available and Ty ended up with a needle in his arm. I swear, what I want to say on this blog might get me arrested. When I got back to the car, Gavin had been crying for over a half hour and his diaper leaked.
To say I was upset over the outcome in this situation is an understatement, but I do want to give credit to the women who ended up drawing the blood. They were very sympathetic, they were very professional and they had excellent skills. Ty didn't require more than one stick, and they were as gentle as possible from start to finish. Afterward he was walking around showing his boo-boo to anyone who would look. I guess you could say that he kinda liked the attention he got for it afterward - no surprise there!
Tomorrow I will spend the day bending over backwards to keep Ty smiling from ear to ear. I will be fanning him and feeding him grapes. I hope to capture some fun pictures to post for you all. Thank you for the love and support. Giant hugs and kisses from Ty and all of the Campbell's tonight. XOXOXOXOXO!!
As I've always said, I will happily do this for years upon years as long as Ty is cured of his cancer, but what about him? How many more hospital stays can a 3-year old handle before his motivation starts to decline? I already know the answer and I'm sorry for even taking this in that direction, but I am sad and I don't want to see him sad even for one more day. I know Ty is amazing - he is SuperTy - and he never ceases to amaze me. I'm sure he will take this on like the little champ we all know and love. Aargh! I'm just so mad that he has to.
A damper to an otherwise beautiful day
Instead of traveling all the way to the city for some pre-chemo testing, Lou called our local Putnam County Hospital yesterday to explain Ty's situation and to see if their lab can handle the bloodwork. He told them that Ty has a mediport, and that he needs to have blood drawn as part of the advance screening prior to chemo. They said they could do it, no problem. The doctor ordered a 24-hour urine test followed by bloodwork. Yesterday I rushed over there to pick up the special "pee-pee can" for Ty at 6PM and I was told to come back the following day at 6PM to drop it off and to get his bloodwork done.
When I got there today it was just after 5. Gavin was asleep in the car with the babysitter. It should only take a minute. Unfortunately, when we entered the room I was told that the phlebotomist was not licensed to draw off the mediport line. That she would have to stick him in a vein. "But, my husband called you... you said you can do this off the needle that is already in his shoulder??..." No. They didn't recall that conversation. Apparently, they don't have any nurses on staff in the lab, and NY State requires that a licensed nurse draws off the mediport. "Well, this is a hospital, right? Can't we get a nurse in here?? He is a weak baby and finding access to a vein in his arm is not going to be easy - trust me!!" I asked them to put themselves in my shoes. That he is three years old and I promised him up, down and sideways that he would not get any needles today. I explained how important it is that he believes me and trusts me through all of this. How I always tell him when something is going to hurt and when it isn't. I was crying and yelling! They looked at the bald spots on his head. They stared at the scars. Then they asked me to be patient while they tried to find a nurse who could help out. More than one hour later, I was told no one was available and Ty ended up with a needle in his arm. I swear, what I want to say on this blog might get me arrested. When I got back to the car, Gavin had been crying for over a half hour and his diaper leaked.
To say I was upset over the outcome in this situation is an understatement, but I do want to give credit to the women who ended up drawing the blood. They were very sympathetic, they were very professional and they had excellent skills. Ty didn't require more than one stick, and they were as gentle as possible from start to finish. Afterward he was walking around showing his boo-boo to anyone who would look. I guess you could say that he kinda liked the attention he got for it afterward - no surprise there!
Tomorrow I will spend the day bending over backwards to keep Ty smiling from ear to ear. I will be fanning him and feeding him grapes. I hope to capture some fun pictures to post for you all. Thank you for the love and support. Giant hugs and kisses from Ty and all of the Campbell's tonight. XOXOXOXOXO!!
Unbelievable, can anybody do their job!! I am so sorry that the medical professionals are putting you through all this unneeded pain and anguish!!
ReplyDeleteI sooooo hate this for all of you, especially poor Ty, rips my heart out!!
I hope since Ty is getting stronger everyday he will SuperTY through this round of chemo and knock out the residual lesions without any difficulties!!
Ty you opened my eyes and saved my life, please God save his!!
Love and prayers!!
Cindy,
ReplyDeleteYour blog reminds me of the time you were talking to Ty about the HULK... I think the saying goes something like "You wouldn't like me when I'm angry." You have to get angry, mad and upset, it makes you stay strong. You must fight for your little baby cub and continue to follow your instincts.
Hang tough (remember, the New Kids?)...
Love & Prayers,
Janine
PS SuperLou is SuperDaddy!!! I am glad he thought to call the local hospital so you could take care of the blood work w/o going to NYC.. Sorry to hear it didn't go exactly as you planned... But you always seem to modify and adjust and PLUS the fact, sounds like Ty took it pretty ok. :)
I'm at a loss for words sometimes when I read your blog. It's just terrible what you guys are going through. I can't handle it just knowing about it and thinking about it. I hate it that you are forced to deal with this most miserable shit of the Earth that is happening to you.
ReplyDeleteI can't believe that whole mess with the lab and how you must have felt. Personally, I occasionally go postal on people and I don't have such a good reason as you do. Just ask Nancy the scene I caused, screaming and crying at the airport once.
I'm not saying you went postal at the lab, but I'm just thinking that in general you should go postal on everybody because I want you to and because you have going-postal rights over everyone due to your situation. I, now, give ye, Cindy and Lou Campbell, carte blanch to go apeshit on the general public at any given time. (And give them some from me too). FUCKERS!!! FTW
keep staying strong cindy. you are amazing. i don't know how you do it. we think about your little boy all the time.
ReplyDeleteCindy,
ReplyDeleteHang in there - you can handle this! Don't underestimate Ty's strong will - he is so brave - he made it through all those tests with no anesthesia!!! I am 39 and was freaking out so bad that they had to stop my MRI! HE IS SO BRAVE AND STRONG! You still have a chance to beat this - and you will. Just hold on... I think you said the chemo was 21 days - that is 3 weeks - you guys will make it through. I will continue to pray for you because I believe that Ty will get beddah and you will be his pwetty mommy for a long time. Enjoy today and take it one minute at a time.
Colleen Rosen is funny! Take it away Cindy - you have the credentials now to go apeshit and postal!
ReplyDeleteSending all the prayers I have that Ty remains strong and happy. He's been through so much in his life--it's time for a break!
ReplyDeleteAnd Coleen---haha I totally agree!!!Anything to protect your baby!!!
God bless you all, Cindy. My thoughts and prayers are with your entire family. God is good and He is watching over Ty. As hard as this is and as much as it hurts you to see Ty hurt, God has your back. Prayers are flowing and blessings will follow.....
ReplyDeleteMichelle in FL
What a beautiful little boy… I still cannot understand how this is happening to SUPERTY and to the rest of this amazing family. :(
ReplyDeleteLast week’s results have left a huge hole in my heart; it feels hard to even breathe reading your posts at times. I pray that Chemo will be easy on this little man that it will not play with his emotions and state of being. I wish I could just take it all away even if it was just for a day.
I would have BEEN IRATE at the hospital! What a terrible thing to have to go through. What irresponsibility on their behalf... :(
I am going to dedicate my day to praying for Ty on his first day of Chemo. I will fast and we are making a special candle for him this weekend :)
God please help this precious soul through these tough times and help him find the strength and inner peace to keep his spirit strong.
Love you Ty SOOOOO much!!!
Mary E. King and the rest of the King family
GA
I think after what you have been through and continue to go through, you have every right to have those angry moments/days. Scream at the world, cry and go postal:) if you need to. Then, take a deep breath and keep moving on. You're whole family is amazing and with your combined strength, you will all get through this!! Along with all of our prayers from across the country! You are on the long road to recovery:) Super Ty can do it:)
ReplyDeleteCindy & Lou,
ReplyDeleteMy heart goes out to you guys, I cant even begin to imagine how difficult this is! I do not know you guys and you don't know me, but I'm telling you, you are making the right decision!
I am praying for you guys everday. Please hang in there, we are all pulling for Ty! I know he can do this!!! :)
(((((Hugs))))
Joy Marielle
Baltimore, MD
P.S. "Cindy, I own a bail bonds company, so just in case, I can always bail you out! lol!"
I just can't believe not one nurse would just do that for you, I mean come on! I would have done it!
ReplyDeleteThank god kids are more resilient than us - really! Especially boys, they forget about stuff so easy! You are lucky this isn't happening to your daughter - girls are total drama queens I swear!
I just cry for you everytime I read your posts, but I know in my heart your little boy is OK and will be OK when he gets older. Kids just don't react the same way as we do about things. They have such a light-hearted way about them. I worry and fret so much more than my kids - they could care less.
I have twin 4 yr old boy and girl so I see the crazy differences in their personalities, but one thing I do know is that this kind of stuff may seem like a big deal to us, but its OK for them.
Super Ty is strong and will be fine through this whole thing I just know it in my heart! Please don't fret, just act like this is the first time again. You can do this!
Hi Cindy,
ReplyDeleteI have been following your little Super Hero for a while and pray so hard for you all, Ty is simply AMAZING! I dont know if you have ever heard about this protocal, it is called the Keiran protocal founded by Dr. Mark Kieran from Dana Faber, and is funded by the childhood brain tumor foundation, another your boy has brain cancer and is on it with very good results,I know everyone is different, but just wanted to send it on to you. Wesley has a caringbridge site at : caringbridge.org/visit/wesleyjaeger
Stay strong, Ty can do this next round just like you said, cus he is a SUPER HERO!
Much Love,
Leslie (through Chris, my husband)
"....Look at the stars,
ReplyDeleteLook how they shine for you,
And everything you do,
Yeah they were all yellow..."
Cindy
ReplyDeleteSeems as though you have been put to the test at every turn. Thankfully you have made it through every excruciatingly difficult challenge by the grace of God. Perhaps these trials were sent your way to make you even stronger – so that you would have the strength that you will need to get your family through this next, important stretch of the journey.
What you have been going through reminds me of the following story . .
A man found a cocoon of a butterfly. One day a small opening appeared. He sat and watched the butterfly for several hours as it struggled to squeeze its body through the tiny hole. Then it stopped, as if it couldn't go further.
So the man decided to help the butterfly. He took a pair of scissors and snipped off the remaining bits of cocoon. The butterfly emerged easily but it had a swollen body and shriveled wings.
The man continued to watch it, expecting that any minute the wings would enlarge and expand enough to support the body ~ Neither happened! In fact the butterfly spent the rest of its life crawling around. It was never able to fly.
What the man in his kindness and haste did not understand was that the restricting cocoon and the struggle required by the butterfly to get through the opening was a way of forcing the fluid from the body into the wings so that it would be ready for flight once that was achieved.
Sometimes struggles are exactly what we need in our lives. Going through life with no obstacles would cripple us. We would not be as strong as we could have been and we would never fly.
We will continue to lift your entire family up in our daily prayers and hope that you feel God’s presence as Ty starts this next phase of his journey towards a miraculous return to full health. And, we will be thankful for your triumphs and for the strength that you did not even know that you had!
The Schopfer Family
Sherman, CT
As my best friends dad always says- They are just PRACTICING medicine!! Sorry to hear about that experience for you guys. But, of course, you used your Wonder Woman cuffs to deflect the negative. Good job, Cindy. I can't stand the old "depends-on-who-you-talk-to-and-you'll-get-a-different-story" routine.
ReplyDeleteAll of this sure gives new meaning to ANYTHING WORTH HAVING ISN'T EASY TO GET. We wish this didn't have to be so trying and difficult but we are all an angry mob standing behind each and every Campbell in this war. And we will never stop fighting for your boy! Ty's army is here to stay!
P.S. Please tell Ty that I, too, love ice cream like a hungry bear. Someday, we will feast at Cold Stone together!!
All love to you and yours...........