Oct. 14, 2014: Two nonverbal worlds collide

Cammy and Eric. Their meeting and new friendship was the highlight of my trip

We woke up early in order to be at the hospital at 8am. We stopped by the kitchen to say hi to Ricky.  We were so excited to see him, even if it was only for a few minutes.  I was bummed that I didn't get a photo.  We will see a lot more of him in December.  

We took the CT2 bus to the hospital.  Nurse Joanna took measurements and vitals.  This was the easiest blood draw Cammy had ever had.  She even smiled during it.  She had to fast for the blood draw so she was so excited to eat waffles after the blood was taken.

Dr. Kaufmann came in.  Cammy was all smiles when she saw him.  We like to call him "Uncle Wally" or "Senior Wally."  It always makes Cammy giggle hearing those.  Cammy and Dr. Kaufmann have been a cute team for over 2.5 years now.  Ms. Suzanne was with Dr. Kaufmann, along with a resident, learning more about Rett.  

Dr. Kaufman did his usual routine check ups.  Natalie was even able to take our information for the NHS study, 6 month checkpoint.  Dr. Kaufmann gave us updates on the trial, good news about more people interested in this IGF-1 trial and answered all of Grandpa B's questions.  I think Dr. K and Grandpa B could have chatted all day.  It was pretty cute, but I had to cut them off.  

checking reflexes

checking the scoliosis

watching Cammy choose between 2 objects

We received our new vials and gave Cammy a shot with her new dosage.  She gained a little weight (HOORAY), so her dosage increased.  We had to wait around another 30 minute after the shot to check her blood sugar levels.  Everything was normal, so we said our goodbyes.  

Natalie rocking her new Cammy Can shirt

sad to say goodbye to Dr. Kaufmann

We took the bus back to the hotel, ate some lunch and checked out.  We hopped into a cab and headed to the airport.  

So long, Hyatt.  See you in December

The airport seemed so quiet compared to O'hare or even Midway.  Everyone was just as nice in this airport as they were at Midway.  At security, a wonderful man with a thick Boston accent appeared to be a tough guy, but melted with Cammy.  He was so gentle and kind to her.  He shared with us that his wife had MS.  Everyone has a story. We gave him a bunch of Cammy Can tattoos for his grandkids. We took a TSA customer service form to fill out because we were so impressed with how well we were treated.  I have a feeling those guys don't get many positive comments.  We were happy to fill it out and they were happy to see our comments.
  

While waiting for a pre-board, Cammy was happy as can be snacking on popcorn and listening to music.  

loving her popcorn snack at the airport

For those of you who always curse me when you read our posts in public and cry, here is your tissue alert.

We could not have had a more positive experience traveling to and from Boston and everything in between. Strangers were so interested in Cammy and approached us to say hi and learn about Cammy We are constantly reminded of kind hearts of strangers and that Cammy brings out the good in people.

Cammy's Chicago Blackhawks blanket was also a great ice breaker! If you know us, we are usually wearing a "team" shirt like "Cammy Can" or in this case, I was wearing my "Proud Mom" shirt and grandpa B was wearing his "Proud Grandpa" shirt with a wheelchair making up the "o" in "Proud."

We handed out so many of Cammy's "business cards" which gives a description of Cammy and Rett syndrome, along with our Facebook page and Rettsyndrome.org website to learn more.

While we were waiting to preboard our Southwest Airlines flight, the Southwest agent checking tickets came up to us to meet Cammy and tell us how amazing she's being (our flight was delayed 40 minutes). While we were telling her all about Cammy, I kept noticing the first couple of people in the "A" check in line listening and smiling at us. There was a young red headed man who I saw typing on his phone, but looking up at his smiling.

I was speaking to Cammy when I felt a tap on my shoulder and it was the red headed man. He had a big smile on his face and showed me the screen of his phone.

It read...
"HI. I love your shirt. My name is Eric. I have ALS. Go Cammy! Go Hawks!"

I looked up with tears in my eyes and gave him a huge hug.

He pointed to Cammy's card where it read "I 'talk' with my eyes" and then typed "that will be me, too, someday." He pointed to Cammy's card where it read "I cannot walk, talk or use my hands, but I hear you. I am smart", smiled and nodded. And I replied "You know exactly how Cammy feels."

We continued to chat for 20 minutes like we were old friends. Meeting Eric was the highlight of my Boston trip.

Eric is in a clinical trial through UMASS with stem cells. There were 6000 applicants and he's one 48 patients in the study.

Up until yesterday I had only read about ALS. Last night, I met a truly remarkable young man not giving up and living life.... smiling and joking around.

PLEASE follow Eric's journey on http://www.fightlikeachampion.org/

.... everyone has a story.

  

Cammy stayed up the entire flight home.  I think she was excited to see Billy and Ryan.   

Boston trip #2 in the books.  

Grandpa B, Cammy and Mom signing off.  

October 13, 2014: Shaking the hand of the woman who shook the hand of Dr. Rett

Day 2 in Boston

Cammy was up early, as usual, so our day began early.  We went downstairs to breakfast, hoping to see Ricky.  Maria, the host, greeted us with big hugs.  She remembered us!  The omelet chef today was Albert, who was just as sweet as Ricky.  Andreas, the waiter, came to our table with big hugs “Hi Cammy!  We missed you.  Where’s your cousins and aunt?”  He remembered us!  Unfortunately Ricky has the day off, but we were promised that he would be there tomorrow. 

Cameron ate 3 pieces of French toast and some apple crisp.  Grandpa B could not get over how well we were treated.  He couldn’t believe how many people remembered us.  And he couldn’t get over the breakfast spread!  This staff has continued to be incredible to us.  Andreas brought us some coffees to go and a bag of snack for us. 

We headed outside to jump on the CT2.  Cammy loved riding the bus.  I’m not sure if it reminded her for Grandma C or going to school, but she had a huge smile on her face the entire ride. 

We got off at the hospital.  We were early so we went into to sneak a visit with Emma, another Illinois girl in the trial.  She was all smiles and her screening was going great.  We were so happy to see her.  We also went to the playground to leave Emma and Elena (yet another Illinois girl starting the trial.  There were 3 of us in Boston at the same time!).  When we got to the giant dry-erase board, we saw that our messages from the summer were still up!  It was so cool to see.  We added our message for our Illinois friends to find.  

Giving Natalie her Cammy Can shirt

On our way to the office on Autumn Street, we ran into Elena and her family.  We were very excited to see them.  Everything was going smoothly so far with them as well.  See little Elena gave me flashbacks of Cammy at 2.  Oh she’s so little and adorable. 

 At the Autumn St. office, we gave Grace and Heather big hugs.  They gave Cammy all her mail.  We couldn’t believe how much was waiting for her! Cammy got all hooked up for her autonomic testing.  This is her favorite of all the tests we do in Boston.  She must sit and watch Sesame Street for 2 hours without eating, drinking, going to the bathroom or falling asleep.  If she needs to do any of these things, the testing is paused.  But she’s made it straight through every time so far because Sesame Street is on.  Grandpa B made his way to Fenway for a tour during this time. 

About an hour into the testing, I had to give her a shot so they could see her reaction all hooked up.  It didn’t seem to phase her as usual.  She was able to give them 2 hours of data.  I was able to do the phone interview part with Grace while Cammy was watching her show.  

  

After Cammy was done, Kate came in.  We love whenever we get to visit and chat with Kate.  Cammy didn’t seem to want to hear everything we were talking about though as she crabbed and then fell asleep.

We made our way back to the hospital to meet Grandpa B.  We went to the Café for Kids to feed Cammy a snack.  We met up with another Rett family from MA.  Irene Gladstone and her daughter, Erica, had actually met Dr. Rett.  Erica is 35 years old.  It always makes me so happy to meet a woman with Rett who is older then me.  It inspires me.  We learned so much from Irene.  We had such a lovely time chatting with them.  Grandpa B could not get over that he “shook the hand of a woman who shook the hand of Dr. Rett.”  It is pretty cool to hear how Erica was diagnosed by Dr. Rett.  

Back at the hotel, Cammy was excited to finally go swimming.  She and Grandpa spent 45 minutes in the pool, all smiles.  She would live in the water if she could.  She is truly the happiest in the pool. 

We ordered Chinese food from Hong Kong in Harvard.  We are making this a Boston tradition since Cammy loves their fried rice.  We had our Mike’s cannolis.  Cammy liked the chocolate chip better than the peanut butter.  She kept smacking her lips for more.  It’s her favorite dessert.  Unfortunately for Billy, we couldn’t figure out a way to bring one back for him. 

It was early to bed for everyone after a long day.  I had to give Cammy her shot at 10:30, which she didn’t wake up during the injection again. 

Goodnight Boston. 

October 12, 2014: First Flight

We have so many people to thank for Cammy's flawless first flight.  Thank you Children's Flight of Hope of providing 2 Southwest tickets for Cammy and I to fly to Boston to participate in the IGF-1 clinical trial.  All the families like mine appreciate organizations like yours who realize the financial strains of participating in clinical trials or flying all over to find treatment for your child.  Thank you Southwest for your outstanding customer service.  Thank you TSA for your incredible sensitivity and kindness with Cammy.

We checked before our trip to see if Cammy needed a carseat in taxis.  We were happy to hear that we didn't have to lug a carseat.  We could just hold her buckled up in the taxis.

The Southwest agent behind the baggage check was very kind and outgoing.  After she checked our bags, she jumped over the counter and walked us through security.  She explained everything they were going to check for, showed us who to give Cammy's placebo/IGF-1 vials and doctor's note to carry medicine.  She then walked us to the gate to ensure our pre-boarding.  While we shared about Cammy and the clinical trial, Nica shared with us that her boyfriend had a brain tumor.  Everyone has a story.

Nica, our wonderfully helpful Southwest agent

I had to give Cammy an injection right before boarding.  She took it like a champ as usual.

We were first to board. We asked if they could keep her wheelchair in tact, which they did because it is small.  Otherwise, we would have had to remove 2 parts, fold it up and risk damage.

Grandpa B was elated to get the first row for his long legs... and for Cammy's needs, of course.  We used the CARES seatbelt to make Cammy more secure and comfortable in the seat.  We tucked blankets on each side of her so she wouldn't wiggle around.  Once she had her headphones and ipad on, she was ready.  Since she cannot chew gum or suck on a sucker, we had to give her juice during the take off and landings to help her with her ear popping.  She did not make a peep during take off or landing.  The flight attendants kept a watchful eye on us in case we needed anything.  We handed them Cammy's awareness cards and they came over a few times to learn more.

One thing I was nervous of happening, happened.  Cammy needed to go to the bathroom.  One person in those airplane bathrooms is tight, let alone two.  The flight attendance asked if we needed the changing table down.  Who knew there was a changing table in those bathrooms!  As I mentioned in a previous post, Cammy does go on the potty.  I was sweating crammed in that little bathroom squatting to hold her.  Then, putting her diaper on was another challenge.  The changing table comes down over the potty.  Cammy is way too long to be on that changing table, so her head was jammed sideways.  Good grief.  But we survived our first airline bathroom.

When we landed, got our bags and went to the taxi line to request a handicap accessible taxi.  It came just as quick as any taxi.  Cammy felt like such a big girl sitting in the taxi without a carseat, buckled up.  She proudly smiled then quickly fell asleep.  

When checking in, another woman behind the counter, Caroline, spotted us and said "CAMMY!  Where's your little sister?"  She remembered us!  We got our requests of a refrigerator for Cammy's medicine and a microwave for Cammy's food and extra bed in our room.

We unpacked then headed back down for the shuttle.  Caroline was our shuttle driver, she was doing overtime.  We were lucky to have her because she told us about the CT2 bus that stops right in front of our Hyatt and takes us to Boston Children's Hospital for $1.60 per person using the Charlie card.  She handed over her Charlie card, told us there's some money on there, that she just got a new one.  The shuttle can take you to 5 different spots, which all have include train stops.  We had planned to take the redline to the North End, but since she wasn't busy, she took us all the way to the North End.

Grandpa B was excited to see a couple stops along the Freedom Trail.  It was a little trickier than we thought finding a place to eat.  It seems as though Boston is grandfathered into not having to make places handicap accessible.  We checked several restaurants, but most had several steps to climb or narrow isles.  We finally found a place called Lo Conte's that was easily accessible.  When we walk/rolled in, Bocceli was playing so we knew this was the place to eat. 

After dinner, we waited 15 minutes in line at Mike's for cannolis.  We took the green line to the Fine Arts building.  The train was jammed packed.  I was nervous we were wedged in too far to be able to exit.  But everyone was extremely kind, bending over backwards to make sure Cammy had enough room and even jumped off the train so we could exit.  The hotel shuttle picked us up from the Fine Art building.

Cammy had fallen asleep, so we decided to save the peanut butter and chocolate chip cannolis for the next night.  She woke up when I changed her into her pajamas and laid her in bed.  She had a big smile laying down, going to bed.
I had to set an alarm to give her an injection at midnight.  We had to adjust injection times so that the team could give her one during the autonomic testing to see any reactions.  Cammy did not wake up to the alarm or the shot.  She must have been in a very deep sleep because she usually wakes easily.
She had a laughing spell at 2am.  Girls with Rett can have these unexplainable laughing parties in the middle of the night.  Her eyes were closed this time, just giggling away for 10 minutes.  These fits always make me smile.  It's much better to be woken up from these then screaming and crying!
Goodnight Boston.