Day 70: Always a New Twist

Day 70 on the road to recovery…

We are finally on to our fourth and final round of chemo prior to surgery, but with it came another surprise twist…

While Sophie’s flu is now gone, she has come down with a new virus that is forcing us to remain in complete isolation throughout the entire chemo cycle.  That means that she is not allowed outside our one particular room in the chemo clinic throughout all 3 days of her chemo treatment.  Additionally, anyone who enters her room (doctors, nurses, visitors, etc.) must be fully gowned, gloved and masked the entire time they are with us.

It has definitely proven a bit challenging to keep a normally energetic happy 3 year old confined to 1 room for 3 full days.  However we are trying our best to keep her as entertained and content as possible, through a number of different activities.  MSK has provided an array of different specialists (dance, music and child-life specifically), who keep Sophie dancing, singing and playing the “egg shakers” which she absolutely adores.  The unbelievable nursing staff has eased the burden as well by bringing her great prizes at the end of each days, and even letting her actually help them with their daily tasks, such as allowing her to “flush her tubes with water, and draw and shake her own blood vials after taking labs from her port.  This brings a smile to her face each time, and has even led to them calling her “nurse Sophie” which she loves.  Chai Lifeline has sent us some amazing volunteers that have come to play with Sophie and keep her occupied during the long chemo days.  And finally, Duo and Facetime calls with family and friends have definitely helped us pass the time more easily as well.

Another fact that has really helped us over this time period is the ability to stay overnight in an apartment near MSK.  The apartment has been provided to us free of charge by an amazing Jewish organization called The Friendship House, located only a couple of blocks away from the hospital.  This phenomenal organization provides us with a fully furnished apartment to stay in, food and snacks for Sophie and ourselves should we need it, and a way for us to eliminate our difficult rush hour commute each day to and from the hospital.  We feel so blessed to be part of such a supportive Jewish community that provides such incredible services through an number of amazing organizations.

We will be finishing chemo on Thursday of this week, and then moving toward our last neutropenic week before surgery.  We are looking forward to coming home for shabbos, and hope that each new day brings fewer surprises than the last, as we reach our second chapter of this journey; Sophie’s surgery.

6 Comment

  1. Blessings to you for finding ways to keep childhood in the hospital environment. Sophie is such a positive force.

  2. Gedalyah Reback says: Reply

    Keep on fighting. We’re following from Israel and pulling for Nurse Sophie

  3. Her pure joyous spirit is amazing!! We are with you overcoming this hurdle and you guys are always in our thoughts and prayers. With love,
    Elazar and Rivkah

  4. Hinda Dukes etc al says: Reply

    Praying for Sophie and you guys and sending positive energy!

  5. I have been reading about your journey with Sophie and I’m praying for health every day. She is such as inspiration.

  6. ellen friedman says: Reply

    Thinking of you guys every time I pray. Refuah shelamah.

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