Written 3 hours ago by Amy MulfordThis is the journal update that I hoped to never have to give...Brooke's scans confirmed yesterday that she has relapsed with Neuroblastoma. There is no cure for relapsed Neuroblastoma and the treatment plan will be to prolong her life as long as possible...A miracle is the only thing that can save my baby girl. Please pray for that miracle. I can not bear the thought of life without her...she is my entire world. There is nothing fair about this...Brooke is the sweetest, kindest and most loving little girl that ever walked this planet. She is pure joy...
The light of Jesus shines through her in all that she does. She loves life like no other. How and why is this happening??? There's so much I want to say about her but I can't because this is killing me and she is sitting across from me right now and I can't bear for her to see the pain that I am in...
I will stick to telling you the events of the past 2 days:
Tues we arrived for CT scan and it was chaotic as usual...took two hours before they gave her the contrast to drink and to make matters worse she was not feeling well with a tummy ache. It took her 3 hours to not even get through the first bottle of contrast and then she threw it all up. They told her to stop drinking and they would just do the scan. It was a long exhausting day.
We arrived Wed morning at 9:00, registration was fast and we were taken right back to get started. This is rare so I thought it was a good sign and we were going to have a good day...smooth sailing. Typically I watch the monitors while she is being scanned but every time I peeked there was nothing for me to see. The scan ended after 45 min and the tech walked out of the room so I went and took another peek and clear as day I saw a spot lit up on her spine...I knew what I was seeing was relapse...and a few minutes later the tech came back in and said they were going to the spec scan (which they only use if there is a problem so that confirmed my fear). They started the spec scan immediately and it lasted an hour. I had to keep leaving the room so that Brooke would not hear me crying...I knew...
We had plans to meet our friends Lisa and Robyn (Robyn came to CHOP from England for the immunotherapy clinical trial that Brooke was in back in 09/10 and relapsed a year later and is now back at CHOP) at POD for a sushi lunch. Brooke was starving when she finished the second scan and still wanted to go and I was still trying to act like nothing was wrong but I think she knew as well...
While at lunch, I sent Dr. Weiser and email. I told him I saw the spot...I know what it is...please make sure Brooke is in the clinic playroom before you see me in the treatment room. I did not want her to witness what I knew would be my breakdown...
After lunch we headed back to CHOP (with Brooke in the clinic playroom making snowflakes) and Dr. Weiser walked through door into the treatment room and he and I both broke down...He loves Brooke so much and I know that giving me that news was almost as brutal for him as it was for me to hear it confirmed...
When Brooke was first diagnosed it was like being the whole deer in the headlights thing. You have no idea what is going on and you can't even begin to process it all. This time around I am all too aware of NB and what relapse means...
I had a glimmer of hope at least the first time around and I held on to that with every ounce of my being...the only hope now rests in a miracle.
For now, Dr. Weiser will meet with all of the NB greats at CHOP and brainstorm to see what options are out there and what they think will be best for Brooke. They have sent out her original tumor from 4 years ago for further testing. Hopefully the results will be back by next week and Brooke and I will head back to CHOP on Wed or Thurs.
As I laid awake all night holding onto my baby for dear life, I decided that in the time that she has left, I am going to make sure that every dream she has comes true. We will go everywhere and do everything...Last time around I didn't want to ask anyone for anything or ask for help...this time around I don't give a damn about that - I just want to make sure that she lives every day with the same joy she has now and then some. Nothing else matters...If you think of an experience that Brooke might enjoy - let me know!
Time to head back to Salisbury...please pray and ask everyone you know to pray for that miracle.
Amy