Kevin update and family news

    • November 26, 2008 at 10:14 pm

      sorry no info

    • Anonymous
      November 27, 2008 at 12:15 am

      Thank God, it wasnt a relapse. What is the deal with him and the ingrown toenails ? OUCH.

      Dawn, I am so sorry about your neighbor. High fever and no output…I’m glad Hospice is there.

      Such sad news for this holiday.

      you’re all in my prayers tonight.


    • Anonymous
      November 27, 2008 at 2:28 am

      You and your family are in my prayers. It sounds like a worrying time, but it is great news that this is not a relapse. I see a lot in the kids with autoimmune disease what I call “a temporary setback” with infection or stresses like surgery. It seems like this is different than a relapse because it is short and can improve without change in treatment when the infection is better. It may be on a continuum with relapse, but the difference also seems that there is not severe ongoing damage that happens and that could build up. I think a badly infected toe could definitely send one’s immune system into overdrive. This is one point that I thought was stated wrong at the symposium. Someone said that they did not believe that there is non-specific effects of an infection (rev’ing up of the immune system). I do believe this. The immune system is not perfect and cytokines to stimulate the immune response to one thing will also affect other lymphocytes.

      I also wanted to say that you are by no means a dummy. You know your child really, really well and you know something was wrong and he was not flourishing. Also you know a tremendous amount about these illnesses and what is important. A lot of doctors out there think that if one cannot detect weakness on a neurologic exam, it is not there. This causes a lot of people on this site to have ongoing damage because it is not severe–but persistent accumulation of damage still can make significant damage. You know I am not doctor bashing, I am just saying not to undersestimate what you know or the rightness of it.

      Regarding your Mother-in-law. I wish for her peace and that she is surrounded by love and loved ones in this time. I also wanted to say that often pneumonias in lung cancer are due to blockage of the airway and collapse of part of the lung and this can cause fever–it does not always mean infection. People can get a secondary infection, though, so it can happen. If in your heart, you think she and Kevie should see each other to say good-bye, it may not have as much risk as just the word pneumonia sounds like. Think about and maybe ask Kevie if he would feel better to say goodbye (wearing a mask and maybe not even getting right next to her if she is coughing) or calling her on the phone if she is still okay enough to hear. There is just so much going on and there are ways that he is mature over his years, that somethings it can help both Grandma and child, especially a child who also fights a significant illness. You have a great heart and one that is very sensitive to Kevie, so follow your heart.

    • November 27, 2008 at 11:16 am

      Grandma Ann passed 4:30 am today. She has had a long struggle. My husban, Nick my older son and myself were with her last night late. I opted not to bring Kevin as she had deteriorated tremendously and it may have frightened Kevin. I told Kevin of her dire condition and asked him if he wanted to visit her last night or see her at the wake all dressed up and happy to be out of pain and with God. He chose to wait. In my heart, I was glad, I fear he is in a delicate stage right now regarding his own feelings. I give thanks that God has taken her on this day after many years of struggling.
      Dawn Kevies mom

    • Anonymous
      November 27, 2008 at 11:41 am

      Dawn, I am Sorry to hear of Grandma Ann’s passing. You All are in My Thoughts and Prayers.
      Keep up the Great work Kevie! Play Hard!!!
      Please remember to Take Time for Yourself Dawn, in these stressful times! Take Care.

    • Anonymous
      November 27, 2008 at 2:19 pm

      I am sorry to hear that Grandma Ann passed away. And I also wanted to say I am so happy and glad that Kevin is not relapsing:)

    • Anonymous
      November 27, 2008 at 5:09 pm

      Sorry to hear of Grandma Ann passing away. I will be praying for your family.

    • Anonymous
      November 27, 2008 at 6:50 pm

      Hi Dawn.
      I am praying for you and your love ones and now Grandma Ann is at peace and with our father. My prayers are answered with Kevie and you. Walk in peace and let all our prayers and all the prayers flow around you’ll. Remember the mirror I mention to you. Take a look.
      Your unconditional friend (Steve)

    • Anonymous
      November 28, 2008 at 10:17 am

      My deepest sympathy Dawn….

    • Anonymous
      November 28, 2008 at 11:47 pm

      Just wanted to let you know your family will be in our prayers. That was a very generous thing for the family to request contributions in lieu of flowers. Obviously you were all important to each other.

      Take care and enjoy Kevie.

    • Anonymous
      December 8, 2008 at 12:42 pm


      I’m really sorry to hear about Grandma Ann. I hope your family is dealing with everything okay.

      I also wanted to say that if you’re a dummy, then I’m a super-dummy, and I don’t feel like I’m a super-dummy, so you can’t be a dummy. Overprotective sometimes, but not dumb! 🙂

      Love ya!


    • December 8, 2008 at 12:47 pm

      How sweet!! My husbands company is switching insurance, new worries!

    • Anonymous
      December 8, 2008 at 4:12 pm

      Well, I know you’re doing your research, so you’ll be prepared come January! We got new insurance two years ago, and I thought it’d be a pain, but everything went off without a hitch! Just go on their websites and/or call and make sure Kevie’s doctors accept the new insurance, which you’re probably doing right now! I’m sure everything will be fine. Our dentist actually didn’t accept our new insurance, but after a phone call to their office, they went ahead and added it so we could continue to see him.

      Good luck!