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#1 PhilB

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Posted 24 June 2011 - 03:31 PM

Conversation between me and my five year old, Zachary.  Adam, his older brother is average sized, Zachary is huge and I had an appointment with a specialist today about a possible second cancer on top of the CML:

Z: When will I be taller than Adam?

P: I.m not sure. Probably when you're about 12.

Z: I know.  I'll be taller than him when he's dead.  He's older than me so he'll die before me.

P: Can we not talk about people dying? It's not very nice.

Z: But everybody dies.

P: Yes, but it's sad. You'd be sad if I died wouldn't you?

Z: Not if Mummy married somebody else.

Hmmm.



#2 Marnie

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Posted 24 June 2011 - 03:53 PM

Just think of him as an optimists. . .or maybe an opportunist.

Ouch!

Lucky thing his dad has a sense of humor

Sorry to hear about the possibility of another cancer.  Let us know what happens. Keeping my fingers crossed.

Marnie



#3 Tedsey

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Posted 24 June 2011 - 04:33 PM

Dear Phil,

I just recently went through this.  For me, it is watch and wait.  Anyway, I understand the fear, especially when you have young children to look after.  Right now I am writing with my littlest one asleep in my arms.  So, what you wrote really struck home.  It stabs deep in my heart at any mention, even casual or joke, that my children may grow up motherless.  Keeping fingers crossed that all you will ever have to deal with is CML, until there is a cure.

Best wishes always,

Tedsey    



#4 CallMeLucky

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Posted 24 June 2011 - 08:28 PM

That stings.  We can come up with various hypothesis about why he said it but at the end of the day it was a hurtful thing.  Try to remember that he is only 5.  I would be certain that he loves you and would be devastated if anything happened to you.  Kids say the wrong things sometimes, usually we let it roll off our back, but given what you are going through right now, I'm sure its not what you wanted to hear.  I'm sorry the conversation played out that way.  I will be thinking about you and hoping for the best.  And hopefully one day you'll be able to remember this and it won't be hurtful.

Hang in there brother...let us know how things are going......


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#5 GerryL

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Posted 24 June 2011 - 09:31 PM

Hi Phil,

Zach's 5, I'm not sure that he would fully understand the concept of death. I'd be worried if Adam had said that.

Hope everything goes well with your specialist.

Gerry



#6 PhilB

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Posted 25 June 2011 - 12:55 AM

Sorry, I didn't mean to depress people.  I just hoped that they too would see the funny side (my wife nearly fell off the sofa laughing when I told her).  I'm particularly sorry if my gallows humour was too close to the bone for anyone who, like Tedsey, had been worrying about such things.  I really shouldn't drink and post.

Z is always coming up with wonderful things like this, witness the following exchange with his Mummy.  Note this is also of a very morbid nature so please don't read on if this may upset you.

Z: Vultures eat dead people.

M: Well...., They eat dead animals, but they don't normally eat dead people.

Z: Why not?

M: Well people don't like the idea so when someone dies we normally bury them so that animals and thing can't get at them

Z (Indignantly); Well that's not fair!  When you die I'm going to feed you to the vultures.

We are building up quite a large collection of Zacharyisms to embarass him with when he's older.

Phil



#7 hannibellemo

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Posted 25 June 2011 - 07:51 AM

I don't know, Phil, having 'boys' myself, I thought both exchanges were hysterical! It reminded me of the time I realized that little boys were really very different from little girls in the snail, shells, and puppy dog tails way. Brendan had just gotten his first "big boy" coat, he was about three. It was a beautiful, sunny but very chilly day. He hadn't been outside playing for very long when he came running in the house shouting he loved his new coat and come look see what fits in the pockets...I arrived just in time to see him pull out a dead, maggoty, bird.

I envy him because at 30 life has always been one great adventure after another. Enjoy the journey with them, in retrospect, it is much too short!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#8 PhilB

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Posted 25 June 2011 - 09:25 AM

Yep, that's little boys all right.  One of our friends had a real classic with her three year old.  She herself has a morbid fear of spiders and really didn't want to pass it on to her son.  She did her very best not to freak out in his presence and to stay calm whenever one of the 8 legged beasties appeared.  She thought she'd been doing really well until the day he came in and said in a mournful voice "Mummy, I don't like spiders".  Her mind was racing trying to think of what she must have done to pass on this fear.  Had he picked up on her tenseness?  Had he seen her flinch?  Had he overheard he say something to someone else?  She bent down, put an arm round him and said: "I'm sorry to hear that.  Why don't you like them?"

"Because they taste funny'"



#9 Susan61

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Posted 25 June 2011 - 02:47 PM

Hi  Phil:  KIDS SAY THE DARNDEST THINGS!!  You do have a good sense of humor, and at your sons age he really does not understand the full impact of someone close to you possibly dying.  I hope this look into a second cancer is nothing.  I think we have all had a scare here and there, just because we know we have CML now.

     I will keep you in my prayers that all is okay.  Please let us know how your doing.

God Bless

Susan



#10 lehrerin

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Posted 25 June 2011 - 03:17 PM

Phil-Very, very funny (gotta laugh because if I dont' I'll cry)....

I found a girl friend for your son

I think they would make an adorable couple:)



#11 SunNsand

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Posted 25 June 2011 - 04:53 PM

I believe that kids that young do not have the capacity to understand the full scope of losing a parent. I lost my mom at 13 and I was not prepared for the impact it would have on my life. I never even thought about it at the time, I just lived one day at a time. I did not understand any of it until I was an adult and became a parent myself. I had a friend who died at age 26 of cancer and she had two very young boys. At the mortuary, one of them said, "now he would be able to do whatever he wanted," thinking his dad would never say "no". They are just too young to understand. I do discuss death with my grandkids when it comes up in a conversation because it is a part of life.

I remember Art Linkletter's TV show Kids Say The Darndest Things. I am a person who finds humor in all sorts of places so I enjoy stories of what children say.  As far as boys being gross, my daughter found my granddaughter standing next to the kitchen sink the other day with mud up to her elbows. My daughter asked her what she was doing and told her to wash her hands and arms. My granddaughter replied, "well then what do I do with all these worms in my hands?"



#12 Tedsey

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Posted 25 June 2011 - 08:56 PM

Dear Phil,

Despite what I wrote, I didn't think for a minute that you took what Zach said to heart.  I am afraid I know your LLS persona too well.  Nevertheless, the meladramtic person I am, scewed a little toward depression, it naturally stung me more than you.  I did see it for what it was.  It was very cute and funny.

Teds  



#13 GerryL

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Posted 25 June 2011 - 11:09 PM

What's the old saying "The apple never falls far from the tree" - I think Zach inherited his father's sense of humour.



#14 spnnrmn

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Posted 26 June 2011 - 10:35 PM

Kids are great, this weekend we were driving our 16 yr old to camp, where she is working as a councelor for the next 5 weeks.   Somehow the discussion turned to cats, which I love, but can not have (wife has alergies).  My dear swet child said "don't worry dad, when you die I'll plant cannip on your grave".

I hope she never looses her wit and humor (or forgets the catnip).

Philip



#15 everonward

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Posted 27 June 2011 - 07:40 AM

Hi Phil

Boys in particular at that age come out with some classics regarding death and related issues.  When James was 5 his best friend's mother lost her battle with breast cancer. Anyway - a couple of days later in class James turned to his friend Johnny and said

" You're lucky"

Johnny "Why?"

James "Because your mum can see you all the time now, mine can't" 

They also had a plan that I could marry Johnny's dad and they could be brothers - didn't factor in to their little minds that I was already married to James dad. They thought I'd just look after all of them. The innocence of youth.



#16 PhilB

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Posted 27 June 2011 - 09:12 AM

GerryL wrote:

"The apple never falls far from the tree".

Hi Gerry, I'd agree with you on that one, but what Zach has inherited is not so much his Dad's sense of humour as his Australian Mom's monumental lack of tact!



#17 Bessie

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Posted 27 June 2011 - 10:55 AM

Phil,

My children are grown, but we joke about my cancer quite often.  Actually, I was diagnosed with thyroid cancer on June 7, 1996 and CML  on December 7, 2007.  My youngest, Joshua,  who will be 21 next month, and I had the following exchange a few months ago:

Joshua: Mom, take that egg roll out of the plastic wrap before you put it in the microwave!

Me:  Why???

Joshua: It can cause cancer!

Me: (eye roll, laughing and staring right at him) I'm a walking carcinogen!

Now, me and my husband and kids (when they come visit) joke quite often, but I've found and had to tell my kids, they CANNOT joke like that in front of my parents.  My parents tear up everytime something is said and I understand that.  Every parents fear is out living their children so we don't joke around Papaw and Mamaw.

Phil, I wish you the best and you are in my prayers.  I'll check in on you...keep us informed.

Bessie



#18 GerryL

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Posted 27 June 2011 - 06:25 PM

So that explains why I found it particularly funny. We tend to try to be polite and call it a "dry" sense of humour - good to see you are surrounded by people who love you and like to keep you on  your toes.



#19 jjg

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Posted 27 June 2011 - 07:28 PM

Yup there is a certain Aussie tendency to call a spade a spade, or when necessary a @#$%!@# shovel. When in either the UK or the US it never failed to amaze how many polite sanitized ways there were to say the word TOILET. Now I'm on this site I'm learning about sharts....although I must admit I'm learning about them in great detail.


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#20 PhilB

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Posted 28 June 2011 - 03:09 AM

I always remember meeting up with an American and an Aussie in a bar in Guatemala many years ago.  Both the Aussie and I were initially shocked, then nearly fell off our stools laughing, when we found out how nervous the American was getting.  He thought we were about to have a fight or something with all the abuse we were throwing back and forth at each other.  It took quite a while to explain that calling each other Crims and Pommie B######s was perfectly normal. 






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