Chemo Cycle 3 of 9 and Rehab

Chemo Cycle 2 went completely as expected.  Alanna's nausea remained every single morning.  She is very skilled at always hitting the bucket now.  Her energy level was really good.  We had a magical September where we weren't once admitted to the hospital.  Not once.  We did go to the ER twice to replace her NG tube that got clogged.  Those were long ER days, it seemed we were last for most likely good reason since they were seeing a lot of trauma patients both those days.  We did fun things, play dates with friends, zoo, children's museum, playground, beach, and the pumpkin patch.  And Alanna's hair started growing back! 

I do so much wish we could do September over and over again.  We loved it and made such wonderful memories to look back on.

On Oct 8 Alanna started chemo cycle 3 this time travelling even further away to Millers Children's Hospital in Long Beach.  Alanna has not been able to walk well since March.  In June when she lost 20% of her body weight she also lost a lot of her strength.  Her mobility in September has mainly been crawling, wheelchair, or being carried.  She has weak muscles in her neck due to brain surgery so she tends to hang her head down most of the time.  She has desperately wanted to independently move and has been trying to which means if someone is not there to catch her every single time she could fall and get hurt.  It was time to get Alanna the ability to be more independent so we decided to try to get into the inpatient intensive rehabilitation program at Millers.  In order to get evaluated to do the program we first needed to be admitted to this hospital for something else which is why we started by doing the chemo cycle.  She was accepted rather quickly into the program.  Right now the discharge date is Oct 26. 

The rehab program has been amazing.  Alanna has very quickly progressed.  We brought her in her wheelchair.  She couldn't stand by herself, she loses her balance so quickly.  After two weeks of rehab she now races the halls on a pink tricycle, walks quite a ways with a walker, holds herself up, has great strength.  She loves swings.

The pink tricycle is actually a really fun story.  She had been riding a toddler police car coupe she'd found in the playroom which had given her independence to move through the halls.  She rode it down to the gym which is a series of halls and an elevator from the 3rd floor (Pediatric Oncology Department) to the ground floor (rehab gym).  She did physical therapy and her therapist, Aimee, told her she couldn't drive the coupe back to her room she either had to chose to use the walker or ride a tricycle.  Alanna melted down saying she didn't want to, she wanted to ride her police car.  It took 5-10 minutes to convince her to just try the tricycle.  She then independently rode the pink tricycle all the way back to her room.  Daddy pushed the police car back upstairs as well.  Mommy has been racing her with a blue tricycle that we found in the playroom.  So yes, everywhere Alanna goes in her police car or her pink tricycle I ride the little blue tricycle!  When Aimee left she took the pink tricycle with her.  Alanna called her back and said, "Can I babysit your pink tricycle?"  Aimee was surprised because of how much she didn't want to do it but was very agreeable to letting Alanna babysit the tricycle.  Now Alanna roams the halls playing MarioKart and rides it down to the gym every time she has therapy down in the gym.  And I am dodging banana peels and blue shells like crazy because Alanna wins every single race.  She is exponentially getting faster.

She also walked a straight 6 minutes on a treadmill, used a walker on a fun princess scavenger hunt all the way from her room to the gym.  She does speech therapy and is learning to keep her head up, and clear her throat so she can speak clearer.  Speech therapy is doing a lot of food play and encouraging her to be comfortable around food with hopes she will decide to eat again.  She has started eating oreo cookies.  Which is huge for her.  She hasn't eaten anything since June.  She 'll be getting braces for her legs to keep her ankles from bending so she will stop tripping over her own feet and she'll be getting her very own walker sometime this week. 

Alanna is my hero, I see her confidence being rekindled, her desire to play and be active returning in full force.  I love to start seeing her trying to do things that she likes to do again.  I have so disliked seeing her being pulled down, I want to make it easier.  I'm  finding during rehab that I am having to do less and let her do more.  I can not even imagine going through what she has had to endure. 

Last night Alanna had a fever.  Also, her hemoglobin levels and white blood cell counts have dropped dramatically.  She got antibiotics for the infection.  We are still waiting on blood cultures to see if she actually has an infection.  Her blood pressure dropped due to such a low hemoglobin level and she did get her 6th blood transfusion.  The chemo nausea everyday has continued so the hospital has been trying all kinds of anti-nausea medications to see if they can find something that will work. Which has not been successful yet.  She is confined to her room for 24 hrs after her last fever.  She hates being in her room, she is ready for a pink tricycle race.  Her hemoglobin level is better since yesterday.  We are still waiting for her immune system to recover.  She had an MRI last week to check on her tumor bed and it is still all clear.  No sign of it returning.

It is still hard for us right now.  Thank you to all the notes of encouragement I received over the last two weeks.  I can't tell you how much it lifted me up to have real conversations with friends.  One step at a time.  I am so thrilled Alanna was finally eligible for the rehab program, even though I so dislike the process, I am seeing so much potential and have hope that Alanna heals.