Red, White, and Black and Blue

Hey all

Alexx here.  It’s 5:45AM and my mom and I are watching the sun rise over NYC.  Darkness giving way to light.  I worked an overnight shift (7pm to 730am) so my night is almost over and mom’s day is about to begin.

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We haven’t posted an update in quite some time so here’s the jist of what’s going on in regards to the different problems she has been battling.

1) HLH: they monitor her numbers weekly and everything is heading in the right direction.  The IL-2 has been normal for weeks.  The Triglycerides (250s) and Ferritin (4200) are slowly trending towards normal levels.  She is about a week away from completing the steroid taper. She is only on 2mg/day.  Once the steroids are off they will continue monitoring her levels regularly to make sure the HLH doesn’t recur.  It shouldn’t.

2) Viruses

A) EBV-negative

B) CMV-negative; she’s still on the anti-viral treatment (Foscarnet) but the dose was        reduced and hopefully it will be stopped in a few weeks

C) BK virus-this is another virus she developed in the urine that’s very common in patients that are immunosuppressed and on steroids.  It is usually self-limiting and they are closely monitoring it.

3) Falls: On July 4th, about 10 minutes before my dad and I arrived at the hospital, she took a tumble from her wheel chair.  She was apparently “bored” so decided to clean the room and when she dropped the cleaning pads she bent down to pick them up and broke the fall with her face (her words, not mine). She didn’t have the call button on her but thankfully she had her cell phone with the nurses station phone number saved.  She calmly called and told them “Hi, I’m in room 1106 and I’m on the floor.  Can someone please help me get up?”.  I’m sure some of you saw the Facebook photos and wondered what happened.  No it wasn’t caregiver’s fatigue!!! Thankfully other then some pretty insane swelling and bruising, she’s totally fine .  She didn’t even break her nose!  And miraculously, she didn’t an experience an ounce of pain.  She was just giggling and taking selfies as her face turned different colors.  Later that night we got to watch the Macy’s fireworks from her room.

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4) Myelosuppression and Immunosuppresion

The bone marrow is still quite fragile as a result of the HLH, the viruses and the treatments(chemotherapy, anti-virals).  She requires blood and platelet transfusions every few days.  Hopefully once the Foscarnet is stopped we will really see her  blood counts start to recover.

The immunesuppression will linger for some time.  The ATG, plus all of the complications, really knocked out her T cells which help the body to fight viruses.  But over time everything should slowly recover and rebuild

5) Acute Rehab Placement

She is growing stronger every day.  She is motivated, focused, and determined.  Some days are better than others but her forward progress is very evident.  The rehab team approved her for placment in an acute rehab unit and we are waiting for a bed at Columbia’s unit on the 8th Floor.  It’s a small unit and she needs s single isolation room so it may take some time.  But she is patient and working very hard every day towards her goal of walking out of here.

“I’m Aviva, and I approve this ad.”   (Mom is full of jokes this morning).

Love and light and thanks to everyone who was been visiting, calling, posting….we love you.

Photo montage!!!

We discovered this beautiful garden outside of the Children’s Hospital.  I have someone take me there once a day to sit and enjoy the breeze while having a cappuccino and a brownie.  It’s my favorite part of the day.

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I love it when my friends and family come to visit 🙂

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4 thoughts on “Red, White, and Black and Blue

  1. So pleased to hear positive news. You are a real warrior with family and friends beside you, giving love and encouragement! Excited for you that you will be moving to rehab soon. Know that I think about you all the time and send love and thoughts of speedy and pain free recovery. Xoxi

    Liked by 1 person

  2. It’s wonderful to hear you are healing. Your strength and positive attitude is inspiring. I look forward to seeing you back in the pool.🌺🌻💐🍀🌈🌞🏊🏻

    Like

  3. Thank you so much for sharing your journey. Hearing about someone’s real experience with this is invaluable to those of us that may go down this road in the future. Thank you from the bottom of our hearts.

    Like

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