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update on my joshie


cmmorgantown

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Boy he hates it when I call him that!!

Any how, I hope I'm not repeating myself, but Josh went it on Thursday for his second round of chemo and his white blood cells were extremely low (the doctor was surprised, she said because the cancer is not in his marrow, she didn't expect his count to be as low as it was), and she was surprised that he had got as sick as he did (for almost 2 days--I know that doens't seem long, but to be THAT sick, it seemed to him and the family it was 2 weeks!-and he started getting sick before we even made it home!), so she's going to put him on a different type of nauseau medicine BEFORE he takes his next chemo which hopefully will be Thursday.

But I was also wondering something else. Josh has been overwhelmed at the response for hats!! I would like to see him get postcards or letters of encouragement, just anything any one would want to send him. I know he would just love it. Does anyone know of organizations who do this kind of thing for adults? Being 18 he is considered an adult.

It's also hard on him because right now he's 18, the doctor advised him against working until his radiation is over, and so here he is, when he does not feel well, broke, unless we give him money (which we do, I'm not asking for that!!!! I just want you guys to understand what he's up against), bored of course, what teenager isn't, and just all around really aggitated easily, which isn't Josh's personality at all.

Well if you guys know of anything, please let me know,

Mary

Oh yeah, as soon as I get enough links (or whatever they're called) I'll post some pictures of Josh

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I'm sorry to hear that he's having such a bad reaction to the chemo. I hope with the new medication, he'll have an easier time.

 

This must be so hard for the entire family.

 

Keeping you all in my thoughts.

 

I don't know about organizations to send cards and notes, but I do know that I'll be glad to send him a card or note or hat or whatever. I'm sure lots of Crochetvillers will be glad to keep in touch too!

 

Take care of yourself! And don't tell him that you called him "Joshie" on teh world wide web!

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I wont bore you with the details, but having been thru alot of illness and fighting to get help, I know it can be difficult. I can really relate to Joshies:) frustration. You are used to doing things for yourself, and now he has to ask for many things that he never had to before. Many of the medications he is taking make you really grouchy, and the sense of losing control of your life can increase those feelings. When I lost my legs, I was having two very consistant dreams, I finally sought therapy and the doc really helped me thru my feelings of losing control.

 

Entertainment helped me a lot. Books on cd, crochet, tons of movies, computer games. I also would love to send Josh a card, I dont know of anyone that sends out well wishes.....but you are sourronded by caring people here who would love to help that way!!!

 

Laura

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mary, hi hon, am so sorry josh is having such a hard time. what program do you run on your computer. i know there are some awesome computer games outthere that i know he would like, if you could tell me what you use (like i use windows xp) maybe if i see something could send him a raok filled box of goodies. nothing major i know as i really am broke, but i know how hard it is to get through the things he is going throug, will send him post cards, cards anything i can to help him. what a special young man he is i know. i am wondering about make a wish, or something along that line. what kind of music does he like. you have my e-mail or can pm me if you would rather tell me privetly.. what about a comfortghan for him, i realize its summer time, but i wonder if anyone wants to help do this. i am sorry i don't have time to put one together but would be more than happy to make some squares. mary maybe you could put it together if we made the squares and sent to you for him, what do you think of that idea sweetie? god bless you and your loving caring family. :manyheart :manyheart

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Mary, I don't know of other organizations that send out postcards or letters, but I'm sure people here on the forum would be willing and able to do so (as we've already seen by some prior posts).

 

If you are comfortable with having forum members do this, why don't you PM me with his mailing address information? Unless he has some anonymous PO box address, you may not wish to post the information in public view on the forum.

 

But we could handle this in one of two ways. People could just PM/email me for his address, and I could send it to them individually. Or, I could post a message with his address in our Board Announcements folder, which is only viewable by registered members. Or another alternative is that I can just start a "Encourage and Support Josh" type of thread and everyone can post their messages to him there. You just tell me which option would better meet your/Josh's needs. No need to explain why it meets your needs the best, just let me know which option is preferable to you. I'll take care of the rest!!

 

If you want, you could also include any information about his particular interests, so people could talk about those or pick postcards reflecting them.

 

I'm sure we can get some good support vibes going to Josh from here in the forum.

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Hi Mary,

My name is Lynn and my son Steve was diagnosed with hodgkins lymphoma stage 2b 3 years ago. Steve will be 20 in a few weeks and is cancer free:yay :yay

I just wanted to share with you that the chemo can make them very sick! Even with all the new drugs for nauesa they still get sick:blush

They also will have mood swings, get tired easily and feel cold even in the summer. My son also had many friends to support him, which is so important for them. They all did the shaved head thing, which was a hoot.

Tell Josh that this will be the time for him to just hang loose, get alot of good movies to watch, books to read and video games to play:D

Mary I would love to send Josh a card, will you email me or PM me through the forum?

Blessings***

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:think Sorry to hear that your son is not well but I am sure he will do well with his family behind him.

:hook What about getting him onto the hook and yarn, making Chemo Caps for others.

It is not a sissy thing to crochet any more.

He would never need to be bored again.

Send me your address via a PM and I will send him a postcard from Hamilton New Zealand.

Good luck.

Regards.

Colleen:hug

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Id send a card eventhough I just sent a cap that wouldnt bug me. Also is there a support group online for him to join. That might be a way to go also. I even know a group of ladies that would "shower him" with cards and notes if youd like

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Guest Catlizg

Am working on a hat and a goody-box for Josh (with the help of my 21, 22 and 23 year-olds who have assured me they will "outcool" the cool). You know, 17-18 is a difficult, mood-swingy age to begin with and then to cope with all on his plate, heckuva lot. And I just be he goes NUTS when people get too maudlin or ootsy-cutesy or avoid any discussion of the actual cause for his illness. As my girlfriend always says, "Can't people see I'm CARYL who just happens to have cancer, instead of CANCER that happens to be in Caryl. I'm STILL ME."

 

Are you guys associated with a large cancer center or a private oncologist? I know Roswell here in Buffalo has such wonderful resources, especially for teens. I would hook up with every social worker, program, book, organization, anything you can to help ALL of you through this difficult time. Everyone will rally around Josh. Do you have lots of people to rally round you?

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I would love to correspond with him also. I also have two girls 17 and 14 who are on My Space all the time, is he? If so he can look for them on there I will PM you their names and the city in California. Tell him to hang in there and take up a hobby, does he play guitar, make models, learn to design things, get him some design books and some artist sketch pads. He sounds like he might have a tendancy to go that direction. That's how it starts, look at Jesse James he is on everyone's tongue because he designs motorcycles. I watched an article about the head designer at Ferrarri, he started out when he was about seven, designing and then went to a college in California that is famous (He is from europe somewhere) for auto design, he then worked at Volkswagen and now he's at Ferrarri and he's not that old. Anyhow I'm rambling, but tell him it is a good time to broaden his horizon's.

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Mary,

I know this seems like a long road your family has in front of you, and reading about other people's sussess won't mean the same as your own, but I'm sure that there is strength on this site for you to lean on. What are Josh's interests? What books, movies, music does he like? He probably won't feel up to doing a heck of a lot during his treatments, and with his white cells down he will need strength to fight germs that we fight easily everyday. Some one said once on Oprah that you need to visualize the disease as the enemy and then see yourself kicking some serious butt. Let us know what we can do to keep you strong also.

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i agree with mary, mary lol you need to think of yourself too, so if your down and need a shoulder to lean on or to cry on, come sit a spell and we will do what ever we can to help you

Mary,

I know this seems like a long road your family has in front of you, and reading about other people's sussess won't mean the same as your own, but I'm sure that there is strength on this site for you to lean on. What are Josh's interests? What books, movies, music does he like? He probably won't feel up to doing a heck of a lot during his treatments, and with his white cells down he will need strength to fight germs that we fight easily everyday. Some one said once on Oprah that you need to visualize the disease as the enemy and then see yourself kicking some serious butt. Let us know what we can do to keep you strong also.

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I hate to hear that Josh is having such a terrible time.:( I remember the days my father had like this....:( Bless his heart!

I will be more than happy to drop cards to Josh if you'll send me your address. Here's my email.... d_m_mcrae@bellsouth.net

I'll check w/ a friend I have that works with cancer patients and see if she knows of any organization like you mentioned. I personally dont, but I cant believe there isnt one out there. I'll let you know if I find anything.

Please keep us up to date on your precious boy. I will keep him in my prayers, as we as the rest of your family!

 

Dawn

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I did some looking and found these:

http://www.chemoangels.com

http://www.teenslivingwithcancer.org

http://www.planetcancer.com

 

The first one, Chemo Angels...while Josh is in active treatment, he can receive a Chemo Angel and a Card Angel. The other two are online communities for cancer patients. The teen one does have some 18 year olds. That way he could connect with others going through this, too. Hope they help!

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:think Sorry to hear that your son is not well but I am sure he will do well with his family behind him.

:hook What about getting him onto the hook and yarn, making Chemo Caps for others.

It is not a sissy thing to crochet any more.

He would never need to be bored again.

Send me your address via a PM and I will send him a postcard from Hamilton New Zealand.

Good luck.

Regards.

Colleen:hug

I agree if he put his mind to helping others then his spirits would get lkifted focasing on his illness will only hinder his recovery give him yarn tell him to make caps to donate to kids he would know what kids of his own age want and are going through

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I hope that Josh is doing better with the nausea. I think that can be worse than losing his hair. Being that sick afterwards can not be controlled as much as covering his head. I guess it is good to remember that chemo is in rounds and that inbetween he can have good days. I will continue to send my good wishes.

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I am sorry to hear about josh tell him to hang in there its always worse before it gets better if you pm me your address I would love to send Josh some cards and letters. As a cancer survivor I know what it is like and how it feels to feel like you are alone even thought there are so many loveing people around you because they are not going throught what you are going through.

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