October MRI

It's been six months, so that meant time for another MRI.  It has been a relatively peaceful last few months as far as Cassie's health is concerned.  We are so happy to have such a spunky little lady and look at her as our miracle girl every single day.

This MRI found a speck of the tumor furtherest away from the brainstem- her doctors are not concerned about it, but are planning to keep an eye on that area.  I know this contradicts a bit what we were told six months ago about the tumor being "virtually undetectable," but they had gone back to the April MRI and found that the same speck was there, just not as visible.  It appears not to have changed in size.  If any tumor did have to remain that is the best place possible to have it- south of the brainstem.  As long as it doesn't grow, it shouldn't cause her any trouble.

We did get cool news about her spine itself.  If you will recall, due to the staph infection, she lost the top portion of the vertebrae (surgery #2) that had originally been grafted back after the tumor resection (surgery #1).  So she was left with "horseshoe" shaped vertebrae in that area.  Incredibly, because she is so young, they seem to be growing back...is that not amazing?!  They show up like cute little stumps trying to reach each other, and will probably continue to slowly grow.

I remember Dr. Riva-Cambrin said this was the kind of best case scenario we were all hoping for.

Before MRI- done at Riverton campus.

Dr. Riva-Cambrin at main SL campus.

We re-visited one of our favorite look outs from the hospital.

Therapy Complete!

Our rehabilitation days are over!  Goodbye to Shauna and Sunel!  We will/have missed you and so appreciate all the hours you came and spent helping Cassidy in her recovery.

These ladies are amazing and truly became our friends- they were masters at improv depending on Cassie's mood, and have done their part to leave us with a happy, healthy, and active little person.

Her neck strength seems to be normal now.  I don't think that anyone who doesn't know her history would notice anything different about the way she carries herself.

Her left arm is virtually as strong as the right and any deficiency wouldn't be noticed by anyone but possibly an occupational therapist.  She uses her left hand for all kinds of fine motor skills.  I cannot believe that at one point she couldn't even move it.  She has surprised us all with the extent of her recovery.  When we brought her home from the hospital she had lost so much muscle mass she couldn't walk and could hardly hold her head up. We had no idea what kind of capabilities she would get back.  Now she runs and dances and bounces enough to make me wish she lived in a padded world.

In fact she did spend last Friday at the hospital for a few hours.  She gave us quite the scare when she fell off the barstool while eating pancakes.  It was so random.  She was irritable and whiney for quite a while and I was uneasy about how she was acting.  I called Dr. Blackburn's office and they said to bring her in.  After a thorough exam they decided on a CT scan just to make sure there was no damage to her head or neck.  They even suggested she might spend the day/night there for observation- that really freaked me out!  Thankfully everything looked great on the scan so we came home- PHEW.  She may have had a mild concussion but was her whirl-wind self by afternoon.  This girl and her head!  We have invested enough love, stress, energy, surgeries, and money to want to make sure this head stays sound!

Walkin' on Sunshine

What a gorgeous morning to receive such wonderful news! MRI results look beautiful. Apparently the remaining tumor is so small it is virtually un-dectable. The areas of enhancement that were being closely watched from the MRI in January are gone and thankfully that meant they were simply areas of inflammation that have gone away. I believe Dr. Riva-Cambrin used the words "no residual tumor." He said he won't say it's totally gone but it is very hard to see. He said he knows he had to leave some behind during surgery but perhaps her immune system fought the tumor itself while fighting off the infection. We call that a miracle.

It was fun to visit our friends- Dr. Kalra, a neuro-surg resident, (we missed two of our other resident friends/heros who were in surgery) and the good folks in NTU- Cassie was shy but they could tell she was finally healthy. I wanted to hug all the parents I saw and tell them to stay strong but I restrained myself. I so appreciate the expertise, patience and compassion of those amazing people at Primary Children's- from the surgeons to the custodians. Everyone we dealt with has influenced us for good. They saw a lot of tears and tantrums coming from me, some cussing too probably. But we feel like we have fought a good battle and victory is sweet.

Sleeping Beauty

Cassie had another follow-up MRI this morning and has been sleeping ALL DAY- they decided on Nembutal to sedate this time because she seems to be building a bit of a resistance to the other sedation drugs and had to be given a second round last time. So the Nembutal worked instantly- always a bit unsettling how quickly she goes from awake to out cold- but it has taken forever to wear off. Thinking she and I might be pulling an all-nighter. Yikes.

We don't know how things look yet. We meet with Dr. Riva-Cambrin tomorrow for the results.

Today I was able to thank and hug the sweet nurse who was with us after the first MRI Nov. 17 when the tumor was discovered. She told us she would pray for us as we walked out the door months ago. She was our recovery nurse again today. It was a sweet full-circle moment. Another angel nurse was with us today who had been involved in a few of our sedations during our hospital stay. What special people we have come in contact with! God bless good nurses! I really feel a deeper sense of love for those around me- those I know well and others I hardly know at all.

An update on Cassie's overall health- SHE IS DOING FANTASTIC! We are so thrilled with her progress and apparently the C Diff has left. We are blessed.

Therapy Days

Here are our PT and OT therapists Sunell and Shaunna. They have become our friends who we love so much. Cassie is still excited to see them each time they come. We are down to weekly visits now and they still come to the house. Cassidy has made incredible progress and they deserve a lot of the credit. They have been knowledgable and confident and positive and creative and energetic. We really appreciate all they have done and the part they have played in Cassie's amazing recovery.

Drumroll Please...

It's back. But never fear, Dr. Blackburn says as the C Diff toxins leave her body it can sluff off in the stool and give us a positive reading. That doesn't necessarily mean it's still acute. She really doesn't have the other awful symptoms we had seen over the last several weeks so we are hopeful that her body is fighting it and that it is on it's way out. She is still on the lactobacillus to try and encourage the growth of good bacterias and we are limiting her intake of dairy products as they apparently don't help foster the growth of the rough lining she needs back in her intestines. So there's an update. We don't want to put her on the Vancomycin unless we know she absolutely needs it. I have learned a lot about antibiotics and how serious their side effects can be. You certainly don't want to be taking them unless you truly need to.

So we'll have a party, a little one, but a party nonetheless and we'll keep hoping and praying for her continued strength.

Dear Diary,

I am tired of being sick!

Love, Cassidy

Enquiring minds want to know how Cassie is doing lately (and bless you for still caring!) I'd love to report that we are back to living happily ever after, but we aren't quite there yet. For the most part things are good. She has had a great week, but we are fearful that the C Diff might not be completely kicked. I took a stool sample in today to have it tested. Maybe I'm just so used to her being sick that I can't believe she's really better, or maybe she really isn't better yet. I guess we will know by tomorrow morning. If it's back we'll be putting her on a Vancomycin taper. BOOO. If it's gone we'll have a party!!!!

We have chosen a new pediatrician and we are so thrilled with him. Dr. Marcus Blackburn is our man. He came at the recommendation of our ID docs because he did residency with them a few years back. We are very impressed with him and love the balance he seems to have between medical competency, compassion, and humor. He doesn't seem at all stressed about the complexity of her case and had even read her "novel" of notes from the hospital before meeting her for the first time last week. He has called to check on her a couple times already-I am in love!