Since November of last year, our little warrior has faced eight rounds of high-dose chemotherapy, seven
neutropenic fevers, surgery, fourteen rounds of radiation to the abdomen, one round of
immunotherapy, and one round of
Accutane. Most recently, she completed an additional two rounds of medium-dose chemotherapy and eighteen rounds of radiation to the skull at
MSKCC. Jordan has endured all of this treatment with a strength and spunk that I find inspiring.
Our plan was to let Jordan recover from the
MSKCC treatment and then go for scans late next week, but Jordan has not been feeling well. Over the weekend it seemed like she was fighting a cold...this week it became obvious something else was going on as she was extremely lethargic, sleeping most of the day and not walking. We went to the
Morristown clinic yesterday and they determined Jordan had pneumonia as well as excessive sleepiness post skull radiation. They hospitalized her overnight and started Jordan on antibiotics for the pneumonia and steroids for the radiation side effects...the treatment has definitely helped her perk up.
More concerning, though, was one of Jordan's lab values. Jordan's
LDH was 2,000 last week and 4,800 this week...the upper limit of normal is 300. A high
LDH can mean a lot of things but it in Jordan's case we were worried it meant the
neuroblastoma was growing. Our wonderful oncologist at
Morristown pulled some strings so Jordan could get a CT scan today and we would not have to wait another week to find out what is going on with our little warrior.
The CT scan showed the
neuroblastoma has spread to Jordan's liver. Our doctor at
Morristown consulted with our doctor at
MSKCC and has determined that Jordan's cancer is no longer curable. Jordan was discharged home and we have an appointment with hospice tomorrow. Our sadness is indescribable but we are focused on enjoying our time with our precious daughter.
Our faith in God and the love and support of our family and friends has given us the strength we have needed for this journey. We are not very good at acknowledging it or responding...most days I can just manage to get us dressed and out the door...but all the emails, posts, texts, calls have meant the world to us. Thank you for supporting our family and for praying for Jordan.
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