Brylee's Battle

August 16-

I got the phone call on Friday night from Emily that Brylee was sick and headed to the Portland Children's Hospital.  Jonathan and Zac were having a 'guys weekend' in Garden Valley so we weren't able to reach them. 

Here is the story from the facebook page:

While on vacation on the Oregon Coast on August 16th 2013, Brylee began to exhibit strange symptoms that local doctors could not diagnose. When Brylee started having difficulty walking over the next few hours her parents, Rob and Monica rushed her to ER. She was quickly admitted to Doernbecher Children's Hospital in Portland, Oregon. After a myriad of tests in a short amount of time, the doctor's

determined that Brylee had a tumor in her lower back that was causing her vertebrae to compress her spinal cord. Surgical intervention was necessary to remove the pressure so she could walk again. At that time they diagnosed Brylee with Acute Myeloid Leukemia.

What started as the Gabby family's annual trip to the coast has turned into a life threatening diagnosis. Brylee and her family are not only fighting for her life, but they are also 500 miles from home. They went to the coast prepared to vacation for a few days, and now will be with Brylee while she receives treatments in Portland for a minimum of a month, and potentially up to 6 months. Once Brylee can come home, there will still be continuing medical treatments to battle the leukemia.

Within the first 24 hours, Brylee experienced tests, MRI's, CT's, spinal surgery and her first round of chemo-therapy. This is just the beginning of a long road of difficult tests and costly treatments. By the grace of God, Brylee made it through the first 48 hours of her devastating diagnosis and was moved to the oncology unit on the evening of 8/19/13. This would become her home for the near future. Although she is not up and walking yet, she is feeling some sensations now in her legs and we are all prayerful that as she recovers, she will gain her full mobility back.

Rob and Monica are faithfully relying on God to answer their prayers. And with that, our first request is that you pray. Pray for Brylee to be healed and for her courage and strength to overcome the battle that has just begun. Pray for Rob and Monica to have clarity and peace knowing that God is with them. And pray for her little brother, Zayden to be comforted. Pray for each person that comes in contact with this wonderful family that they might help fortify them in their time of need.

 

Emily and I continued to text and talk until the wee hours of the night.  We didn't have much information to go on at that time and just prayed.

Saturday, we got a hold of the guys and they were coming home.  More tests and questions and MRIs for Brylee.  Finally, just as Jonathan was pulling in, Monica called and gave us Brylee's diagnosis of AML.  We were all in complete shock and felt so helpless.  Before the night was over, she had surgery to remove the tumor and got her first round of chemo in her spine.

Sunday was spent figuring out travel arrangements and packing.  Emily and Cam were going to take the RV over that day and Jonathan and I were going to leave after work on Monday.  Kingston, Barney, and Tucker were going to stay with Grandma and Grandpa...but mainly Grandpa.

Monday took forever but by 4:30 pm we were on our way to Portland.  We didn't get there soon enough to see her that night, but headed to the RV park and got situated there.  We definitely had a full house with Joan, Cam, Rockee, Emily, Jonathan, and I.

Tuesday we headed to the hospital not quite knowing what to expect.  But there was our sweet Brylee and she was so excited to see us.  Brylee got Emily and I going on the Polly Pockets and Jonathan made us a great ski hill for the girls.

It was craft day and Brylee wasn't feeling quite ready to leave her room so we brought the craft to her!  It was beads and bracelets.  Emily's braclet fit her perfectly...blue and orange.  Brylee and I, however, went with a more eclectic look and used a little bit of everything!

As if that wasn't enough for one day, we also made all sorts of fun things out of clay.  I think we went through 8 packages of clay and by the end we were mixing our own colors.

I was exhausted by the end of the day but we had lots of fun and there were lots of smiles and giggles.  We headed back to the RV just in time for bed.

Wednesday we headed back to the hospital again and were excited to see what the day held. Everyone was so generous and we never had a shortage of toys to play with.  It took us a good part of the morning, but we got "Heartlake High" put together (it is a Lego Friend's set).  Complete with a bathroom and science lab!

We played BINGO on the TV and Brylee ended up winning a paint by number set and a stuffed animal (this was probably the 5th stuffed animal that she had gotten since she was admitted!)

We took Brylee for a walk around the halls and met some of the other kids and parents.  We sat in the play room while the music therapist sang a few songs to Brylee.  When she sang "Just the Way You Are" by Bruno Mars, Emily and I struggled to keep our eyes dry.  Brylee is definitly a beautiful girl and she has such an amazing personality.  It's so hard to see her in the hospital and wheel chair when just weeks ago she was running and jumping without a care in the world.

Emily and I got to sit in on her physical therapy and it was great to see her make some progress and learn to use some different muscles.

Thursday marked the first day of chemotherapy for Brylee.  She was going to have 10 days of chemo (2 times per day) and then an 18 day recovery period.  We weren't sure what to expect, but we should have known that she is a super strong girl and it didn't even phase her!

Physical therapy was exciting and they introduced Brylee to a new way to exercise her legs...I think she enjoyed the new ride.  She was also able to hold herself up for 50 seconds by herself.  This was and amazing feat considering the day before her record was 5 seconds.

Jonathan started on a special project for Brylee...painting the windows in her room.

Friday was chaotic with a room change and re-organizing.  Brylee made me tell Jonathan the bad news about having to start the window paintings all over, but he took it pretty well.  Zac had come over yesterday evening so we introduced him to the craft room.  The people running the art room are very good at their jobs and made Brylee a house for her Polly Pockets. They then offered up our services in sculpting furniture for the house out of clay.  We started off slow, but by the end we had a good looking house.  Emily decorated the walls, installed carpet, and hung up drapes.  Zac built furniture and hooked up the electronics.  Brylee built some furniture and painted the house.  She also oversaw all of us on our jobs.  I was in charge of creating the pets...a dog and cat and also the swingset. It turned out pretty good!

By now, Brylee was really enjoying being up in her chair and out of her room. We roamed the halls and did projects.  We even ran into a nail salon set up by two other patients.  Brylee convinced Zac to get his nails done and the girls did a great job.  One hand was bright pink and the other purple and they both had lots of sparkles.  Somehow, Emily and I ended up with blue nails!

Saturday, we had to put the pressure on Jonathan to finish up his window murals.  He did a great job and gave her an aquarium on the front window...



...and every other request Brylee had on the other window! (Curious George in the tree, a horse, and a butterfly). 



  

Emily and I helped Brylee set up in the hallway and she painted out nails before we had to leave. 

It was so hard to leave, but I was missing Kingston.  I'm so glad that I got to visit and play with her in her first few days there.  She was definitely getting more comfortable with everything and by the end I heard her singing to herself.  Her smile is so genuine and contagious! I just love her so much and am hopeful that this will all be behind us soon!