Scarlett’s Update for July

There is no doubt that the past week has been a challenging one. But in the overall scheme of things, it was also doable. Scarlett remains neutoropenic but given that it’s summer,  we are still able to go outside and do things which is a huge improvement from winter. We just have to stay close to MSK in case Scarlett were to run a fever. Again, given it’s summer, there are less viruses floating around and less sick people so the overall risk is lower. The real risk remains her own body not being able to control the normal bacteria that we all have. Scarlett is also so much stronger that I can no longer judge by looking at her if she is neutoropenic or not!  She has a lot of energy and is just so happy that she feels better. Her hair continues to grow back and I dare say it’s even starting to turn up a bit on the ends in the back!  The doctors said there is still a chance that her hair could fall out in places before it starts growing in for good but for now, we’ll take what she has!  She is making tremendous progress.  Summer has brought us all happiness.

To answer a few questions that I have been asked a lot, here you go! Scarlett is in round 3 of 5 intensive maintenance cycles. Assuming no major delays, she should complete this cycle by the end of the year.  Then she will start maintenance which will last another year.  She no longer receives radiation. Her treatment is solely chemotherapy.  To give you an example on how one of her treatments has stepped down from what she was receiving in winter —  She was receiving 2 spinal taps a week. That was reduced to once a week, then once a month and now she receives a spinal tap once every 52 days.  We are getting there!  We were warned that her treatment was a marathon and it really is!  We literally go day by day and appreciate all of the moments of normalcy that we find along the way.  In terms of school, Scarlett is being tutored at home and will continue to do so until her doctors give her the okay to return to her classroom. We expect her to be back with her friends in the spring of 2015.
I am attaching a link to the MSK web page as there are at least 2 articles of interest.  Firstly, MSK was ranked the #1 hospital for cancer care in the nation.  We feel very lucky to live so close to MSK. We know we are in the right place and we know these doctors are going to cure Scarlett and so many others.  Secondly, please read Personal Reflections from a Medical Oncologist written by Diane Reidy-Lagunes.  I met Dr. Reidy a few days after Scarlett was admitted to MSK.  A fellow Buckley Mom, she stopped by to introduce herself and to offer her support and I now consider her a close friend.   We have been through a lot together over the past 9 months to say the least!   I remember one day this spring – Scarlett and I had been at the hospital since 7am and it was now 6pm.  We were probably the only ones still on the out patient side of the hospital and we were both exhausted.  And then, in marched Dr. Reidy with a much needed coffee and a huge smile!  She had spent the day at her son’s field trip and then came to work to check on her patients.  She had also had a very long day but still made time to check in on Scarlett (and quite frankly, me!)  She is an amazing person professionally and personally and I am so proud to know her.  When I look for silver linings in this nightmare, she is definitely one of them.  Her blog is definitely one worth following.  Please find it below by clicking on the following link.
From all of us, we thank you for your continued love and support. I know this is also a marathon for you.