May 7th, 2009 is a day that I will never forget. It started out with that dreaded phone call at work insisting that I get home immediately. What was supposed to be a somewhat normal doctors visit for my son turned into a mad dash to the Mayo Clinic in Rochester. After meeting with doctors that afternoon we had a disasterous blood draw and an ultrasound. It was confirmed that he had a pheo on his left adrenal and due to his elevated bp (220/120) and elevated heart rate (185) that we needed to be admitted to the Ped's ICU. What we had hoped would be a quick fix turned into 30 days in the hospital spent waiting for his bp and heart rate to stabilize and recovery from surgery.
Those 30 days were the longest of our lives as we just wanted our family back home and healthy. VHL was an immediate unconfirmed diagnosis and the blood test was not helpful as it showed a mutation however one that isn't yet linked to VHL, however they want to stick with that for now as they have no other explanation.
Our son is 4 years old and had 3 tumors (every scan he had seemed to produce another tumor) which they removed along with his adrenals. Since surgery he is a changed man. I use the term man because he has experienced more and handled it better in his 4 years than most men have. No more naps, all kinds of energy, and no more irritability. While we are proud of how he has handled this it has not been an easy path for our family or marriage.
Today we got referred to a pediatric orthopedic specialist due to some atrophy in his leg. At this point they will not tell us if it is VHL related or completely different.
As a parent I am angry, scared, and confused. I want my son to have a better life than I have and am not sure how to go about that. We do not pity him or treat him special but am afraid of how others will treat him. He wants to be a baseball player when he grows up and play for the Milwaukee Brewers. While most boys have this dream I don't want him to give it up because of some illness/disease or whatever the hell he has.
We focus on the positive and try to live one day at a time but you know how us humans are. Any comments, advice, suggestions, hate mail, whatever would be appreciated. Thanks
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My son
- By Porq
- Posted July 1, 2009 at 1:03 am · 3 replies
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- By amanda509
- Posted July 1, 2009 at 1:41 am
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life is scary! my son has nf! and he is brave as well! sounds like you have a really great ,brave, wonderful kiddo! when i am scared do to a complicaton of my sons nf he always says mom dont cry dont worry i will be fine and hugs me! and that alone is enough to get through a scary situation for me! enjoy every moment with him make memories stay positive your in my prayers
- By joyceg98
- Posted July 3, 2009 at 2:08 pm
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What a journey! I am so glad that he is safely through the pheo surgery. I posted another comment about the DNA testing.
As for the atrophy in his leg, there is nothing we know of that is connected to VHL that might be responsible for that. Please keep us posted as you learn more from subsequent appointments.
All best wishes,
Joyce
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