Thursday, November 1, 2012

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 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.

Tuesday, June 19, 2012

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!

Wednesday, April 11, 2012

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.

Tuesday, April 10, 2012

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.

Saturday, March 17, 2012

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.

Friday, March 16, 2012

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!

Sunday, February 26, 2012

Good News/Bad News

The good news is that Friday's appointment with our neurologist, Dr. Francis Filloux went very well. Cassidy's EEG looks as it should following a craniotomy. Her brainwaves are all moving in their expected patterns. He said that recurrence of a seizure would be highly unlikely but not impossible. He told us from his standpoint he expects her to make a full recovery, and suggested weaning her off the Keppra medication over the next 2 weeks. YEAH!!!

The bad news- her C Diff has come back! Early last week she was showing symptoms again. We had quit the antibiotic on Friday and by Tuesday I was on high alert. As I stewed about it Wednesday morning trying to decide what to do and which doctor to call, I received a call from our Infectious Disease doc at Primarys- Dr. Anne Blaschke. She was just calling to check on Cassie. It was 100% providential. She has been amazing and has really been there for us. We know she really cares and is invested in Cassie's recovery. I told her what I thought and she called in orders for another stool sample and a prescription. Apparently in 30% of cases it will recur 3 to 10 days after stopping the antibiotic. So we fell right into that category and lab results confirmed. Same drug but larger quantity this time around. Still every 6 hours. Here we go another 14 days- from Wednesday.

It seems to have kicked in finally and her diapers aren't as tragic and quite as frequent. For a few days she was inconsolable every hour or so as she was cramping and basically had battery acid-type stool eating away at her skin, no matter how fast we changed her. This is really not an infection to be wished upon one's worst enemy. Thankfully she is eating ok again and we are trying to get her to rest as much as possible. She was given a blessing and we are very hopeful that this round of drugs will do it for her. GO CASSIE!!!

Thursday, February 16, 2012

Feeling Brave

Don't let these pictures, fool you, it's been a rough couple weeks over here but things are looking up, and I'm finally feeling brave enough to post again. Cassie is responding well to the antibiotic, Metronidazole. She's been taking it orally every six hours round the clock, so safe to say I'm still pretty much a walking zombie- but ok with that. When she was in the hospital I remember walking past her empty crib at home so heartbroken, I'm just glad we are home getting better, not in the hospital getting better! Today is day 14 so we are anxious and hoping that she will still be good when we stop the med tonight. We have pretty much been shut-ins since coming home from the hospital, as we are trying so hard to keep her healthy. It's unnerving to know her immune system is not where we want it, and there are concerns about getting her off and keeping her off antibiotics for a while going forward, so we really don't want anything yucky over here. Her body needs a break from the antibiotics!

She is happier these days and her appetite has come back, as her symptoms seem to be subsiding. Her favorite foods are cheese, chicken nuggets, and chocolate milk. I give her dozens of snacks a day- pretty much whatever she wants, whenever she wants. A funny thing- the other day she picked up the phone and started babbling away, ordering chicken nuggets and such, just like hospital room service. We ordered a lot of meals that way- and she never really ate any of they charged a lot for that food.

Our PT/OT visits have been less frequent because of her illness, but we have had it a few times and are looking forward to continuing. She has been doing awesome with therapy and we are so pleased with her left hand. It's really a miracle the way it's coming back. Her neck needs some strengthening so we are working on that, but she is looking good!

Today she had an EEG to study brain waves, in preparation for our end of month visit with the neurologist. We are hoping to get her taken off the anti-seizure med that she is still taking twice a day.

The visit went much smoother then I anticipated. We were instructed to keep her up 2 hours later then normal last night, and wake her up 2 hours earlier then normal this morning- that was fun! She was so agreeable though and I was really proud of her. She is so so brave. Going back to the hospital is so unsettling for both of us, it's a strange feeling- we lived there for so long, and now just really want to close that door, while at the same time feeling so grateful for the hospital and staff who are now part of our lives.

So they hooked up electrodes all over her head-(I told her they were doing her hair) and taped them all in place. (And sadly I forgot to take a picture!) She lay there quietly while I read lots of stories. Then they wrapped her head with a turbin-looking bandage, turned out the lights, and told us to sleep. I laid with her in the bed and amazingly within minutes she was sleeping! They watched and recorded for about 30 minutes, then came in and flashed strobe-like lights- super annoying- at her while she was still sleeping. It was an interesting process. She woke up and said "I want to go home" and we did! They pulled off the sticky tape-which she hated, and then they gave her 3 blankets and a pillowcase. Seriously. I guess it was a slow day and they felt the need to shower her with donations. She is super cute and she even said "thanks." She was quite pleased. Sorry it's taken so long to be brave, we sure appreciate your love and concern!

Friday, February 3, 2012

Junk in the Trunk

RARRRRR. Cassie has had flu-like symptoms the last couple days, and lab results have confirmed that she has C-diff. (Or Clostridium Difficile). It's a yucky bacterial infection in the intestines. It can surface during or after extended antibiotic treatment, because the good bacteria was killed along with the bad, and now C-diff has taken over. It's so gross. The poor thing has been throwing up and has big time diarrhea. For a while yesterday she would wretch and poop at the same time. I didn't know which end it was coming from. It saddens me/angers me to have a sick baby still. I want this to pass quickly. I am feeling a little bit bitter to be honest, but glad we caught it and are on antibiotics. We hope this first series will take care of it. C-diff has been known to be hard to treat. Remember praying constantly for Cassidy Allen back in the day? Turns out she still needs you...

Saturday, January 28, 2012

Tubby Time

Forgive us for showing a little skin(and my finger covering part of the second photo), but had to share that today Cassie had her first real bath since November 17! Josie joined her, and they had a marvelous time soaking in the bubbles. They played happily for almost an hour while I scrubbed the rest of the bathroom. Cassie was delighted of course, as she has always been a big fan of tub time. In her old life she was accustomed to bathing frequently, and even had multiple baths a day at times, because of the fact that she thinks of her hair as a napkin. So you can imagine the torture it was for her over the last few weeks, whenever she heard the bath water running and it wasn't for her. It was always tricky to keep her distracted, and to keep her clean for heaven's sake! So hallelujah for today and Hip Hip Hooray! (as she was chanting in the first photo). The simple pleasures in life we had so taken for granted...

Thursday, January 26, 2012

Cheeseburger Celebration!

This is Cassie yesterday receiving her last infusion of our favorite drug in the world, Nafcillin. It saved her life. She has been on it since her second surgery on Nov. 29- so 8 weeks. She received cocktails of other drugs along with it, but Nafcillin was our warrior drug. Now we are all ready to be done.

Its official! The PICC was pulled today. We are all thrilled-seriously.

She is still on the Keppra, the anti-seizure medication. So next up EEG and neurology visit in February to see if we can kick that one to the curb.

Things are fantastic. Cold symptoms gone, we are in a good place right now. FREEDOM!

Tuesday, January 17, 2012

Still PICCing our Battles

Inquiring minds want to know, and YES Cassie still has her PICC line. Unfortunately after all our precautions, she has a COLD, and the virus is negatively affecting her lab results. Her docs are being extra cautious and keeping her on the Nafcillin for a while longer. We should know more maybe by end of week, but until she can kick this cold, her blood work won't look great. Boohoo. She has a pretty gross sounding cough, but it could be worse. Her mood is still really good and she has been waking up early every morning saying, "I want to watch Lion King." That's her latest movie of choice. Steve was asking why she always wants to watch a movie even though she really never sits around and watches it once it's started. It's called a habit. Nothing like Simba at six am...In fact I've decided she rarely sits, she is constantly on the move and getting into things. Seriously, she is such a busy body and it's so great! I am feeling old and out of practice as she terrorizes the house. And to be sure, I did age at least ten to fifteen years in the hospital, my hair and wrinkles are a testament to that. Somebody told me I looked really thin the other day, which I think they meant as a compliment-I don't know maybe not. I told them emphatically that I do not recommend the stress diet. Don't worry I'm snacking like nobody's business now.

Our therapists Shauna and Sunell are still coming four times a week and things are going really well. The big kids are off track so they are home to help. They like to be in on the secret that our "play time" is really "work" for Cassie. They love to trick her into doing "work."

I had a conversation with our patient resource manager from Primarys today about our bad discharge information regarding the outpatient therapy. She was very apologetic, but said she was really glad to get that feedback. I hope that will help other patients and their families in the purpose was simply to educate. Had we not received that call from Aetna informing us about home health rehab our life would be very different right now.

Thanks to all who are still following our story and loving us through this.

Wednesday, January 11, 2012

MRI Results

Everything went great today with the MRI. Dr. Riva-Cambrin is really happy with the way things look. He said her brain looks just like it should a month after surgery, and there are no concerns there anymore with the infection. Her tumor looks good too- in fact he said it's hard to say exactly, but the remaining portion may look even smaller today. Miraculous. We will have another follow-up MRI in 3 months- again, thank you Aetna insurance! And yes, Steve, I will probably be a stress-case again in 3 months...

So "Diva-Riva" - (a pet name the residents call him) and our infection disease doc (Dr. Blaschke) will discuss when to stop the antibiotic and pull the PICC. We think that will be in the very near future. Cassie will have blood work done again tomorrow and we should know more then. We had a very good lengthy discussion with our favorite doc-and he is just really pleased with the way she is recovering, as are we obviously. We simply adore Dr. Riva-Cambrin. We know we were so blessed that he was the on-call surgeon when we were in need November 17. We have always felt that he has extended the very best of his skill and expertise, as well as compassion and communication. From the very first we have felt part of the team and respected. Who would have thought a neuro-surgeon would be down to earth and easy to talk to? Not us, but he is- and he is amazing! He told us we are due some "good karma" and that we should go buy lottery tickets. So signing out and headed to Wendover to try out lady luck......AS IF! We know we have already received a miracle and luck had nothing to do with it!

However, is it karma that she has taken a renewed interest in potty-training? I think so. On the other hand Diva-Riva guesses she'll want to keep her "soother" aka pacifier until she's twenty, after all the trauma she's been through. He also told us to be cautious with Cassie but not to treat her like our "glass child," and that it will be best for her to be able to "run with the pack." I would readily admit to treating her like a porcelain doll.

If you are still reading, wow, you are amazing as well. Some interesting things we have learned in the last couple weeks. Dr. Riva-Cambrin said Cassie's original tumor -removal surgery was one of the most complicated surgeries the hospital saw all year- WHAT?! And Dr. Walker, the neuro-surgeon with 35 years experience under his belt, told us twice he has never seen a case with more complications. We're glad they told us all this after the fact not during....

Tuesday, January 10, 2012

Random Cuteness

Here's some of our activities of the last few days. She is so happy and doing great. She is enjoying "dress up" and there's been a lot of singing and dancing coming from her. As you can see, she also got herself and stroller into the empty tub the other night. I think she really misses the bath. It's hard not to be able to bathe her- due to the PICC. And let the records show that her hair color is different! The surgical scrub they used during surgeries has officially stained her beautiful blond. She's more of a strawberry blond now. I have washed her hair a few times and it's not helping. A bit annoying and a bit funny.
Our therapy sessions have all been really positive so far and she's making progress fast. She cracks us up because she's always willing to participate in the different therapy "games" but as soon as it gets too hard or tiring she just walks away. Our therapists are so good at improv and moving from one thing to another. Two-year-olds aren't known for long attention spans...
Overall things couldn't be better. MRI tomorrow morning.

Thursday, January 5, 2012

"My Little Buttercup has the Sweetest Smile"

Our little friend is doing great. Today we saw our infectious disease team docs and got a good report. Cassie's lab reports are looking good and her mood is fantastic. It was fun to show off her improvement- and let them see their knowledge and skill paying off. I thought they both lingered quite long in the exam room and just kinda happily stared at her. Cassie was not thrilled to be back. She was happy to see "Nemo" again (the fish display on the main level) and some of our favorite spots, but she got really upset after a while. Poor thing. She was very excited to exit the hospital and go "find the car."

We have an MRI scheduled for next Wednesday the 11th, and we are anxious for good findings. They will look at the remaining tumor, and the infection/inflammation of her brain. After that they should be able to tell us when she can stop the antibiotic and get the PICC line pulled. So that is our next big hurdle- we want a good looking MRI!

She is bopping all over the house and getting into things. I caught her heading down the hall with an uncapped marker in hand this afternoon- where does she find these?! She is teasing and silly and we are just loving it. Again, no feeling sorry for herself. I don't even think she recognizes the differences in her body. In a way her scars are good reminders to us of her battle and our journey. The word REMEMBER is very significant to me. There are several things that I want never to forget- and others that I hope will completely fade from my memory in time-things that are just too painful. Again, thank you for the love and support. It's touching that we are not forgotten.