Cait's story...

[k8smum]

come 3am tomorrow morning (november 27) it will be 2 years since cait lost consciousness on our bathroom floor due, probably, to a brain bleed. by 10am we were back home grieving for the loss of our bright, beautiful girl.

cait was never ill til she began feeling badly in jan 2001. after weeks of hearing how 'well, she's a 14 yr old girl and you KNOW how they are' i knew something serious was going on with her. they finally redid the bloodwork for the upteenth time, faxed them to an oncologist and we were told to head to Childrens Hosp of Pittsburgh before the day was out.

they did an lp on her and a bone-marrow biopsy from the hip; the cancer cells were so packed they could hardly aspirate the marrow. she had 94% cancer cells. we were admitted, she was put on morphine for the pain in her bones and our lives were changed forever. they like to have kids in remission by day 7; caitie didn't reach it til day 25. but as they told me, she has ALL and that's the good leukemia. curable. for most.

we spent the next almost 5 years pumping poisons into her, irradiating her, making her sick as the perverbial dog. she only got 1 month total of school attendance after dx. she mourned the loss of her fertility, but would talk about one day becoming a 'mom just like you, momma. you are the best there is'.

one time she went 17 months without gaining remission after a relapse. we were losing her. then, suddenly she hit the magic number of cancer cells and was able to have a bone-marrow transplant. it was torture for her. she had what amounted to hundreds of cold sores from her lips all the way thru her digestive tract. she had burns from the full-body radiation. the pain was terrible. the precautions to protect her non-existant immune system necessitated isolation. it was just her and me, with phone calls to dad and brother.

but it was going to be alright! she was going to live, she adapted to the learning problems caused by the chemos over the years.

then, just 10 months after the transplant, the end of october 2005 she got up one morning and said: 'mom, my hips hurt really bad.' alarm bells went off in both our heads but i kept hoping that she'd slept wrong or something else. instead she had relapsed yet again. i kept asking the dr 'how do i tell her?" but she knew and came up behind me, circled my waist with her arms and told me that we'd just do it all again. she was so much braver than me, always!!

we entered hospital in november for extremely intense chemo. her transplant dr assured us we would be in til her counts recovered. then her regular oncologist, the head of the dept, told us she would go home and come to clinic 2 times/week for counts, chemo, platelets, etc.

i fought for 24 hours to keep her in hospital. it was thanksgiving week, tho, and her onc was adamant that is was alright for her to be home. finally i gave in. (cait was content to stay, which was something). i was tired and still in shock over the relapsed. i listened to him rather than my gut feeling.

we came home tuesday and she had a clinic appt on friday after t'giving. her dad took her as she wanted to give me a break. there was 1 nurse on duty, who was not the brightest crayon in the box. cait said she felt dehydrated by rose said, no, you're not and wouldn't even give her fluids. they only sent 1 bag of platelets so that's all rose gave her. then sent her home after being there for 5 hours. cait was disgusted and just wanted to come home; she was exhausted.

we always got a sheet printed out with her numbers; that day we didn't. i only found out later that her platelet count was 1, meaning 1000. healthy is 100,000. i don't know why either her dad or she didn't bring this up or why i didn't ask. i would have taken her right back and raised all sorts of hell...

on saturday i was playing video games while she watched and she suddenly said:'y'know mom, if dr. r doesn't think i;m going to make it, why doesnt' he just let me use dr g?? he still believes in me.'

we went to bed around midnite. at 3am i heard my son (18 months older than cait) scream for me, that cait was collapsing. i got to the bathroom and she was already losing consciousness. she said 'i'm scared, momma...am i gonna die?' i told her no, baby, you are just dehydrated. but i knew i was lying.

the ambulance finally came and she and i went into hospital. they asked me, en route, how much was to be done for her. i told them everything!

our car was broken down so my husband and son didn't get there til about 2 hours later. i have never felt so alone in my life. i watched them doing cpr on her, begged for help in making decisions re: life support, but the drs just looked at me as if i were speaking an alien language. i told them to stop then they told me they had a pulse back...if i could have gotten a gun i would have shot myself.

i begged for info and help. i received none. finally bill and our son mick arrived. we decided to stop life support. we entered the room, bill and mick each held a hand while i stroked her bald head and quietly sang her favourite song in her ear. i told her she could go. the tech said that her readings were all over the place but they calmed down when we got there.

then it was over. my baby, my heart was no longer in this world. we went home to the emptiness left by her passing.

i would not let them do an autopsy as they had messed with her enuff over the years. i wanted them to just leave her alone.

BUT! how i wish someone would have said: 'y'know you don't have to do this right now. wait til tomorrow, give yourself some time.' but no one could be bothered, or take the responsibility.

the oncologist who sent her home finally phoned the following tuesday, telling me how surprised they all were to hear of cait's death! but also how fortunate we were that she hadn't lingered. if i had been in his presence i would have spit on him. they have a policy of not meeting with parents whose kids die...the only deptartment allowed to have that rule.

i know if we'd stayed in hospital we would not have lost her then. they would have monitored her counts and infused platelets. she would have had a chance. after the 5 years of dealing with leukemia we had neither the strength nor the finances to sue.

we once talked about the possibility of her dying.  i told her ok. you see death. acknowledge him, tell him you know he's been hanging about. then tell him to piss off, you've got more important things to do than worry about him all the time. things like living, fighting.

that's all i wanted: for her to spend her time living rather than dying. and to not be afraid at the end. i pray she heard my lie to her!

i take responsibility for not fighting hard enuff, long enuff about her staying in hospital. the 'if onlys' are a bitch. i know i never did anything regarding her treatment with anything but her welfare in mind, but i effed up badly that time and there was no second chance.

want to know what the hospital was concerned about? whether or not anyone had walked us to our car after she died. that is a big deal to them. i would laff if it weren't so insanely assinine.

people think that when you have a child with cancer you are lucky, you have the chance to say goodbye. but it's just not true. you never, ever give up on that child!! you fight every day for that life. you cry alone and then wash your face and go back to face the endless beepings from the iv machines. you find ways of making them laff when they are so sick it breaks your heart. but you never, ever give up!

i am sorry this is so long, but it only skims it. i want her back. to those who say 'you wouldn't want her back sick, would you' i say 'in a ny minute!' we'd fight the good fight, laff at the ridiculousness of it all and keep holding each other up.

cait is my heart, my hero and my very breath. each day is a struggle of staying in this world while she is not here.

annie

[wyomingsal]

I think all of us who have lost a child are so lucky to have had them in our lives for even a short time. I would never give up even one minute I had with my son.  But we are all so sad and heartbroken to find ourselves living on without them.  I still find myself not believing that my son is really gone from Earth.   I want badly for him to still be here with me, talking and laughing and sharing a relationship with me.

For anyone to say your loss was easier or not as bad as their's is rubbish.  Not one parent who has lost a child has it better then another.  The circumstances might be different for, but each child is just as important and valuable to those that love them, and the loss is just as unimaginable.  Thank you for sharing the story of your daughter. 

Sal 

[tearsofaclown]

Annie, first of all let me say I admire how hard and long you fought for and with your daughter.  I'm sorry for your loss, I know my words aren't near enough to touch your grief yet I hope you understand I'm just reaching out to say I think you're one hell of a woman for your courage and strength when your daughter needed you the most.  You were there.   There's no effin' up in that you were there, and you tried to do the right thing for Cait time after time.    Mistakes, what if's.. all of that is going to be in your mind for a long time, but please don't forget to remind yourself that you were there.  That in itself speaks volumns to me, and I'm certain it did to your Cait too.    You were there.

[sherrie8168]

Annie,

You are my hero. What a brave and valiant mother you are. Cait was lucky. NOW she can watch over YOU for a change. Your own personal angel.

Praying for your heart's healing.

Love,

Sherrie

Bill's Momma

http://bill-mcmahon-iv.memory-of.com/about.aspx

[k8smum]

sherrie, i feel neither brave nor valiant...i am just a mom who doesn't know any other way to do things for her children.

i went to your bill's site; lovely job, dear.

best,

annie

http://caitlin-mayes.memory-of.com/

[sherrie8168]

Thanks for the kind words.  I appreciate the candle you lit for my son.

Keeping you wrapped in prayer.

Sherrie

Bill's Momma