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Thread: So far, so good

  1. #1
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    Default So far, so good

    Hey all,

    It's rare I am at the Big Keyboard, and free to type a lot. But here I am now! Let me first say thank you to those of you who post regularly. I read the forum all the time; the education I have received from you is priceless. I also have had some good laughs and also been glad to know what is going on with you, for better or for worse. Especially in the early days of diagnosis, your words were lifelines. My daughter at one point would tease me that every other sentence out of my mouth on our morning walks began with "Last night I read on the forum..."

    Our daughter is now 15. We moved to Southern California over the summer, and I am so grateful to have more access to a variety of doctors. She has remained in treatment with the Rheumatology Clinic at Children's Hospital, Los Angeles, although she primarily goes to the satellite clinic at Miller Children's Hospital in Long Beach. After hospitalization and diagnosis in March, our girl had a hard road ahead of her. She had lost a lot of weight (mostly muscle) and had sinus, lung, nose, and skin involvement. She was diagnosed, by the way, through a skin biopsy - just an f.y.i. She was given two infusions of rtx, put on prednisone and mtx (and all their companions) and did NeilMed sinus rinses.

    Now seven months later, she is off of Prednisone, will begin to go off of mtx in January (hopefully,) and still does the NeilMed. Her lungs are no longer leaking blood, her only remaining lung nodule is calcified (wasn't expected to go away,) her sinus CT showed much improvement, and she is working hard in PT to turn Pred weight gain back into muscle as well as address neurapathy in her feet. (She can't stand very long at all without intense pain, and even walking / running will be painful for a day or so afterwards. She uses a wheelchair for extended Disneyland jaunts!!)

    Opthamology and hearing tests have revealed no abnormal issues.

    Second best of all, she scored a goal in a soccer game two weeks ago (her dad and I sobbed on the sidelines, never mind the other team was getting crushed and it was a relatively easy goal! This was a girl who made a "hat trick" - I'm unsure of the terminology: 3 goals in one game - during tournament play before she got sick, and all she wanted was to be able to play again.) To me, best of all, is her joy and hope are back. She has some "wtf just happened" days, and some times of real frustration and grief, but overall she is more and more her laughing, confident self again.

    I continue to believe that Pediatric Wegener's is a different animal than Adult Onset in a few key ways. Her Ped Rheum just told me they used to believe that 1/3 of ped weggies will have one bad episode then none ever again; 1/3 will have one bad episode, 2-3 flares, then none ever again; and 1/3 will fight it the rest of their lives. He said now they (his team) believe it's more like that last third doesn't exist - with advanced treatment protocols this disease can be caged when a child develops it. She will need to monitor her labs probably the rest of her life, and she will be dealing with the ravages of the disease (sinus issues, feet issues) for quite some time. But so far, so good.

    When I think back to the horrible days in the hospital, with our girl so very very sick, I also remember how I felt after finding this forum. I hope you guys know how you have walked this journey with me, gone to all the doctor's appointments, sat in the PT waiting area, helped me carry the message of empowerment through education to other weggie moms on facebook, and helped me be a beacon of hope to our daughter.

    A gentle hug to you all, especially Phil, Annekat, MishB, and Alysia (sp? sorry!) in Israel. Your positivity is infectious.

    yours, WTW

  2. #2
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    All I have to say is...WOW!!!! I want to hug all of you as well. I doubt I would be here if it were not for all of you. I am so glad to hear your daughter is doing so well now and that she has great docs looking after her. Thankfully you are in a major center where there are good and large teaching hospitals.
    Phil Berggren, dx 2003

  3. #3
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    Dear WTW,
    another BIG WOW is coming from Israel
    I read your words with tears of excitement, very thrilled...especialy to read how your daughter's joy is coming back to her
    it is most hard to be a parent of a sick child, seeing your loved one suffering is more aching then to suffer yourself, you just want to take the pain and suffering away, even to carry them yourself, "carry the cross"...
    your girl is on her way to recovery. what your doc said about kids WG is very encouraging. it means that with good treatment, which she is already getting, she can live normally.
    I wish that there will come a day in which wg will be only a memory, aching one, but also one of being brave and of amazing supporting family - yours family WTW, and, if I may say, yours family here in the forum.
    thanks for your good words.
    hugs to you WTW and to your daughter and family, and hugs to the amazing people here. I love you all, my weggie family
    Last edited by Alysia; 10-30-2013 at 06:31 PM.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Another Big WOW from Australia

    I'm so glad to hear how well she is doing, and has done.
    Maybe one day, she too will become a member of our family on here, as you are.

    I think I sometimes see my family rolling their eyes when I tell them of another story - or even another joke/laugh that happened on the forum today or yesterday - but I also know that they share my happiness, share my prayers and also share my tears when someone is in trouble or when someone has achieved something unbelievable.

    I will continue to pray for your daughter and for everyone else on here, that their health keeps heading in the right direction and she/they will one day be med free .........No.........WG FREE
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    I'm so happy to hearthis wonderful news that your daughter is doing well now. It's awesome that she's feeling better and even playing soccer again! I'm glad to hear she was able to get off pred that fast and without problems... I hope she can lower MTX without issues in January as well. Onward and upward for her!
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

  6. #6
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    Thanks for the wonderful update, WTW. I'm so happy for your daughter and your whole family that she is doing so well.... already off pred, WOW! It does seem that pediatric WG is different than adult WG. We adults have had more time for it to be smoldering and setting up housekeeping in our bodies. And younger people's bodies are perhaps more capable of bouncing back to normal, although everyone is different and some adults have done better than others. Many mysteries about the disease are yet to be solved. I'm glad to hear of your move and you now have access to a better variety of doctors, and it sounds like they are good ones, judging by her progress. More power to her and all of you!
    Anne, dx'ed April 2011

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