PA and leukemia

Posted on: Wed, 02/06/2008 - 12:23am
mom2specialboys's picture
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Joined: 02/05/2008 - 17:33

I have never posted to this board, but used to read and get lots of useful information in the past. My son was diagnosed in April 2004 as being severely allergic to peanuts. He had just turned 3 years old. This diagnosis struck me with fear and panic. I watched the boards and learned about what to look for in his food and other areas of life. We have only had a few cross contamination reactions and none required the epipen. We have been very lucky.

However, in all that fear and unknown, of the food allergy diagnosis...it doesn't compare to a cancer diagnosis. My son was also diagnosed in August 2006 at the age of 5 with acute lymphoblastic leukemia. We have learned to live with both the cancer and the peanut allergy on a day to day basis. Some days, for example, when my son is sick or feeling weak from his chemo treatments, then the cancer scares me worse. On other days, for example when he has a school field trip or class party, then the peanut allergy scares me worse. But we still manage to be strong in the face of both these challenges.

I feel I have support in the area of his cancer. His clinic and others that we have met through there or caringbridge...where my son has a site have been a tremendous help. However, I feel I may need support in the area of his food allergy, since I've met no one who is facing the same problems. So...after my long introduction, I hope I came to the right place. I look forward to learning, sharing, and getting some much needed support.

Posted on: Wed, 02/06/2008 - 1:04am
Chris's picture
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Joined: 01/12/1999 - 09:00

Glad to see you posting!
I am also glad that you have been using the PeanutAllergy.Com web site and that it has been useful to you.
If you need anything let me know.
I will be praying for your family.

Posted on: Wed, 02/06/2008 - 3:36am
Mrsdocrse's picture
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Joined: 01/16/2007 - 09:00

WOw... I always try to remember when dealing with this allergy that he is thankfully healthy other wise. My hat is off to you. You sound like you are handling both very well. But yup.. I think you are right.... people understand cancer because it has been around for so long and most of us have had ( unfortuately) a friend or relative close to us with cancer so they can empathize, sympathise and understand. But Peanuts? and allergy? Hard to comprehend. Any way welcome!
Therese

Posted on: Wed, 02/06/2008 - 5:59am
mom2specialboys's picture
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Joined: 02/05/2008 - 17:33

Thanks for the welcome. Actually the chemo part and allergy part collide at times. There have been several instances where they give him chemo drugs or even the blood and platelets that can cause an allergic reaction. So they pre-medicate with Benedryl and also stand by with epinephrine just in case. Talk about me being a nervous wreck! We just pray and keep on trudging through...one day at a time.

Posted on: Wed, 02/06/2008 - 8:30am
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Joined: 05/28/2009 - 16:42

I will pray for you and your son. I cannot imagine what you have to deal with. It is very overwhelming to have a child with LTFA, but for your little guy to have to go thru this too!
My hats off to you as well! I wish I had an ounce of your strength. I post a lot on the school section, but when I saw this, it caught my eye and heart. I wish there was something that I could say, but I know there is not. Sharing your problems does help. Hang in there!

Posted on: Wed, 02/06/2008 - 9:18am
mom2specialboys's picture
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Joined: 02/05/2008 - 17:33

Thanks for the welcome and for your prayers. You know, it's ironic how our prayers are answered. I was so worried about my son attending public school when he started kindergarten, because of his peanut allergy. I worked full time and my boss knew that I was sick with worry, so she was going to allow me to leave work early to pick him up from school so I wouldn't have to put him in a daycare center. I was praying for something to work out with my employment..ie- work part time or be able to quit work until ds was older. Well, he went to kindergarten for two days and then was diagnosed with the leukemia and I have been home with him ever since! He couldn't go to school for his kindgarten year, so his teacher came to our home and did homebound with him. I never had to worry about his allergy at school at all. He is now in first grade and it has been a worry, but I can't focus entirely on the allergy when I have to also worry about sickness, chemo, treatment days, getting behind in school, etc. He has an IEP now for the learning disability due to the cancer , but they have been great in working with us on both the leukemia problems and the allergy awareness! They know he has these two life threatening areas in his life and are pretty diligent about watching out for him. Not as much as I would, but I feel as safe as I can without me being there.
Thanks again for all the warm wishes and prayers! We sure can use the prayers! I know you will think I am making this all up, but my dad was also going through terminal colon cancer at the age of 52 when my son was diagnosed. He passed away the day before Father's Day last year and it has not been easy. He was my confidant about all this and helped me work through my fears, problems and solutions. He was the only person I felt truly safe in leaving my son with, because he was a paramedic and knew what to look for and what to do in any situation. My fears have strengthened since losing him and I truly need the extra support.

Posted on: Wed, 02/06/2008 - 10:33am
gretchen098's picture
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Joined: 02/02/2008 - 12:49

mom2specialboys
My daughter is in a very similar situation as your son is. she was diagonosed with leukemia at age three, way before the pa,she was pa diagnosed three years ago. she went into remission at age six. then this past summer relapsed. some doctors think that the pa could have been contracted through on of the blood transfusions but they can never be sure.i hope that your son gets through this battle soon. i agree with you on the different days different worries. i find myself pretty even on both. since my dd is 15 she knows what she has to go through if something is wrong with her cancer, trip to hosp, and all that, so i fear that she tries to suck up to much. she is very diligant with her allergies, which send her to the hospital once a month or so. well once again you are in my thoughts and you have come to the right place.
danielle

Posted on: Wed, 02/06/2008 - 9:38pm
mom2specialboys's picture
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Joined: 02/05/2008 - 17:33

Danielle,
Thanks for your post. I am so sorry that your daughter has relapsed! That, of course, is a fear that will never completely leave me either. I know some people think that you have to deal with the PA for a lifetime and that the cancer is over once treatment is finished, but that's not the case. I will always worry about everything that happens to my ds. I will always be on the lookout for the cancer return, but also deal with the affects that the chemo will have on his body for the rest of his life. And there have not been enough studies on long term child cancer survivors to really know what to expect for them later in life. Yes, we will also be dealing with his allergy all of his life too...but one is no worse than the other really. They both have made a stake on his life and changed it so that he is 'normal' no more...he's 'extraordinary'!!
I will keep your daughter in my prayers as she continues the battle against cancer. Is she undergoing a bone marrow transplant? Please keep in touch. You may email me or visit my son's site to contact me.
Jenny

Posted on: Fri, 02/08/2008 - 12:33am
MommyOfTwo's picture
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Joined: 11/08/2007 - 09:44

I honestly don't know how you women do it, you are all so strong. Sometimes I feel like I'm having a rough time with the pa and DS's eczema and feeling a bit hopeless because he is so broke out and such that. You all will be in my thoughts and prayers.

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