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My husband was diagnosed with CML when our kids were about the same ages. One was 16 the other 12 almost 13. I have to say it is because of them that we have handled the CML so openly. They have made us keep our own emotions in check and when times got more difficult, we seemed able to pull things together because of them. When we told them we waited a couple of weeks until we were a little more stable with things and after we had our own issues initially under control (i.e. insurance issues, work issues, initial medical stability, etc)..We took a pretty scientific approach actually and explained that dad had leukemia, that it was an unusual kind that could be cured with a bone marrow transplant and that we would be testing his siblings to see if they were a match. We explained that until the time we knew about a match, he would be taking an experimental drug called Gleevec. As we discussed it with them, we explained that it was our expectation that they do what they have always done and keep their grades up and keep focused on school and their extra curricular activities. That was what they could do to help the situation. We would take care of the medical situation. We said to them from the beginning that we would always be open and honest with them and answer any questions they had. They could talk to whomever they wanted to about it, it was up to them. We did contact their school counselor to let them know what was going on at home and ask their support if they thought the kids needed extra help. We talked to the kids about some emotional difficulties they might face and how they could get out of an uncomfortable situation appropriately. Of course one daughter had a teacher in biology that was discussing cancer research, specifically leukemia and had no idea what she was dealing with. When she said oh I know about that because my dad has leukemia, the poor teacher didn't know quite how to handle it. We are both former teachers so we used it as a teaching moment to show our own kids and those we had taught that bad things happen to good people and that you can't quit life when you face difficult challenges.
The kids have matured over the last two years with this and their schools have been very supportive of them and their dad. They have had fund raisers and a bone marrow drive. The drive didn't result in a donor for my husband but over the last 18 months has resulted in 3 matches for others who have had transplants. Our kids have been able to participate in helping others with this disease, even though these efforts did not help their dad. In the end our kids were both tested and they are a perfect match for each other, but not their dad. Strange world, but they now know no matter what they will always be able to count on each other. Our kids have probably benefited most from understanding the disease and helping the adults around us who care for my husband and our family to cope with the sadness of having a disease with a cure we can't access. So far, the kids have been able to keep things together and not let this disease be their excuse for not doing well in school, even when others would have thought it to be a valid excuse. Their comfort in discussing it has helped them, though sometimes made the adults around them squirm a little. My youngest often writes school papers about it and what her future might be like without her dad and about her hopes for the scientists and researchers discoveries. My husband has made efforts to spend more special time with them and meet them at school for lunch on occasion and be open to answering their questions. We do have a special rule in our house, only one person can fall apart at a time. It turned out to be a great rule. You never know whose emotions will overflow at a given time. Our youngest will often remind us, "okay you guys, remember the rule, whose day is it?" It makes us laugh and allows us to regroup and get back on track.
Difficult times, to say the least, but two years after diagnosis, we are still all hanging in there, being sure to appreciate the moments we have and knowing that our future is not in our hands. Also being sure to have no regrets!
Good luck, glad to help if we can IIf you kids need someone to write to, mine are open to corresponding with them
dcapra @aol.com
n a message dated 9/13/2004 8:54:19 PM Mountain Standard Time, [EMAIL PROTECTED] writes:
am a 55 male with two children...16 and 11. I was diagnosed last New! Sign up for local CML support group meetings in your local community at http://cml.meetup.com Apply for Commercial Real Estate loans online and submit your deal to dozens of hungry lenders in just minutes. Loan programs for all types of business and commercial real estate. Apply anytime at http://realestatezoo.com CML (Chronic Myelogenous Leukemia Support List) --------------------------------- Part Of CMLHope.Com An International Community Of CML Patients For more information: http://cmlhope.com Post Message: [EMAIL PROTECTED] Subscribe: [EMAIL PROTECTED] Unsubscribe: [EMAIL PROTECTED] Change To No Mail/Web: [EMAIL PROTECTED] Change To Digest: [EMAIL PROTECTED] Change To Email: [EMAIL PROTECTED] List Help: [EMAIL PROTECTED] CML Group Web Site http://groups.yahoo.com/group/CML
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