Sydney

30 Jan

Remember a few months ago I was talking about trying to have a Swab Party for finding a blood donor for Sydney. It didn’t happen because all of my friends are too old but a few friends did send away for a swab kit. A donor was found and below is the story written by Sydney’s mom about the actual transfusion day. What Sydney has gone through to prepare for yesterday was grueling, painful, sad, tiring, etc. What these kids that have this type of leukemia go through is heart wrenching. Anyway here’s the story. From now on there will be a page called Sydney, like I did for my niece Juli, that you can keep up with a bone marrow transplant.

Day 0
8 hours ago
First off, for those of you that have a notification that goes off when there is a Caringbridge Update….everything is fine. :). This is just the first chance I have had to provide an update…..and what better time than when sitting in the uncomfortable chairs in the ICU. Oh, how I loathe these rooms!!! But, this is the best place to be tonight to ensure if there are any complications they are taken care of immediately. So, where do I start…

Day 0. It is such an amazing, incredible day when you think about it. New stem cells….new life. Truly a new birthday. Jason and Jeremy arrived about 9:30 (after dropping off coloring supplies at the clinic….they were out of Syd’s color for cancer kids packs). Shortly after they got to the room, the “green team” (ok, that is my nickname for the child life specialists) came to the room for the “Birthday Party”. There are two child life specialists, one art therapist and one music therapist. They brought a sign which is now hanging in her room for everyone to sign as they visit Syd. It says ” Sydney Rocks”. Very appropriate. They asked Syd what she wanted to do first at the party….open her present, sing……she said “have Jeremy open his gift” (that is just the way she rolls….). Jeremy got a cool pair of headphones and an iTunes card. He loved it! Then we sang some songs and played instruments, and then Sydney opened her gift (a pair of headphones and a cool mini art easel with paints). It was very cool and special. Oh, prior to the party, the art therapist asked Sydney if she wanted to borrow her camera (really nice camera) to take pictures all day to document her Transplant Day….of course she said yes! So, there were camera flashes going on ALL day!!! I am not really sure how many photos she and Jeremy took…but, wow…lots!!! She is going to come back to Sydney’s room on Friday to do two things….bring a printer and they can print out some of the pictures and bring a shutterfly gift card so Sydney and her can make a photo book with all the pictures. I love how they do these things!!!

We moved to the ICU about 10:30. Sydney walked. I don’t think many patients that are getting admitted into the ICU walk to their room….but, once again, that is how Sydney rolls!!! Then the waiting game. Original plan was transplant at 12, then 2, then 3. It is hard as the parent….waiting, waiting, hoping nothing is wrong and still entertaining the two children that depend on you. Oh my. I think we broke every rule in the ICU…we played music (softly), we took pictures, we face timed (thanks Aunt Stef and Uncle Steve)…at one point the nurse stepped out, Jeremy crawled in bed with Sydney and the monitors started beeping. The nurse came back in and Jeremy said ” by the way, her heart stopped beating”. Omg! I thought the nurse was going to fall over….then we all laughed. Needless to say, the Balzer’s made the ICU a “fun” place today.

At 3, the goods arrived. In a pinkish/purple colored cooler (we have a picture of the cooler!). About 3:30, the transplant started. It literally is like a blood transfusion. The stem cells look red and it goes from the bag into the tube into her port. Very slowly. For the first 25 minutes of the transplant, there will 11 people in the small little ICU room….all staring at Sydney. I don’t think she was thrilled with that….everyone watching for signs of an allergic reaction. The whole process took about 2 hours. Much more amazing than a blood transfusion, but, not much more exciting to watch. She was awake through the whole thing (the pre meds made her tired, but, she was watching TV for the last hour of the transplant). Jeremy left about 4pm…he wanted to rest a little before a church function tonight. Thanks again to the Greaves for their taxi service :). It was wonderful having him here,,,but, the hurry up and wait is not exciting for a 13 year old (ok, it is not exciting for any of us).

The evening has been fairly uneventful. The main concern is blood in the urine….means her kidneys are working in overload…so far no blood. She is having horrible stomach pains and very loose stools still…..a side effect still from the pre-bone marrow meds (chemos and ATG). She is in some major pain….they are going to start some different stomach coating meds to helpfully help. If all goes well, we should return to her room in the morning.

Jason is here tonight as well. As we learned before, it is hard to leave when she is in the ICU. You just don’t know what could happen. He made me go take a nap from 9:30-11:30 in her room upstairs and now he is upstairs hopefully sleeping until morning….tonight was my second night shift, so I will attempt to sleep a little in the upright, uncomfortable chair…..not thinking that is going to work very well. Oh well…it is one night. :). Jeremy is safe at home with Gpa M tonight.

So, I have to share one more interesting fact. The bone marrow was obviously brought from overseas by plane. It doesn’t fly alone…a person hand couriers it. The cooler gets its own plane tickets and “sits” right next to the courier. One security exception….no X-ray of the marrow!!! I just thought that was crazy….thanks to the courier for all the TLC last night and this morning. You delivered something amazing to Children’s Hospital today!!

So prayers….pray for the stomach issues to get better (or stop). Pray for a peaceful night. Pray for no infections (her immune system is completely gone). Pray for the stem cells to like their new home…..and to want to reproduce (ok, that sounded weird….the late night is getting to me)….it will take them time engraft (probably 14 days). Pray for limited Graft versus Host Disease (you want some to fight any remaining leukemia cells in her body but not lots to create other issues). Pray for the donor’s quick recovery. That is a large list…..

Thanks for all the support today and always. We continue to be amazed at the Sydney Rally Team. Guess that is just how you roll!!! Awesome!!! can read updates. Sydney is the granddaughter of our good friends Dave and Sherry.

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One Response to “Sydney”

  1. Sherry 01/30/2014 at 10:11 am #

    Love you J! Thank you. Grandma K

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