A Very Difficult Time
Our meeting with Dr Park went really well and we came up with a
treatment plan that we felt comfortable with. I finally felt I could
breath again and had my hopes up high. Unfortunately this only lasted
for a day. We received very bad news about Lina's cancer once we came
back home. Now the plan we came up with Dr Park will change again.
Lina will need a lot of luck and way more treatment. She will have to
undergo major and risky abdominal surgery in the next week or two to
get a biopsy unless the MRI that we need beforehand confirms our
worries and the cancer is majorly growing again. If the cancer is
somewhat stable we will proceed with the debulking surgery to get a
biopsy. If the cancer is growing fast again, Lina will need to have a
laminectomy and everything that comes with this and might be
paraplegic afterwards. In both cases Lina will have to be in intensive
care afterwards.
Due to the results from some of the testing Lina falls now in a
category of neuroblastoma patients for whom there is no protocol or
study as there are not enough cases to conduct a study. This means no
one knows the best approach or the best drugs to use.
Dr Park still gave us some hope but we are worried and scared beyond
believe. Lina's treatment plan will majorly depend on the biology of
her tumor after the resection. Should it still be undifferentiated,
she will fall into an even smaller subgroup with even worse prognosis.
So we are praying that her biopsy shows differentiated neuroblastoma.
Oma will most likely fly out again next week which will make a huge
difference.
I was so excited to write about our good news after talking to Dr Park
but now I am having a hard time even writing these few lines. Mike and
I are pretty crushed. Please understand that we won't talk about
Lina's
new prognosis and her next treatment when Frieda is around, the poor
girl unfortunately was there when I received the bad news. I am trying
to shelter her as much as possible as she has heard too much already.
Please pray for Lina and send her as much positive energy as possible,
my little girl will need it in order to win her battle.
Thank you
Kati