Boston Awesome

10009934_10151992970070880_1581000096324920769_oI am sitting on an airplane headed home again and overwhelmed by just how awesome the last few days of our trip went. Our time away at Cape Cod was really good. It took a full two days for the adrenaline of the last few weeks to subside a little and I began to feel human again. Chloe turned the corner just in time and we were spared a trip to urgent care which was a great way to start the week. As we drove back to Boston Claire beamed with excitement. She was ready to get back to the business of clinical trials and world changing.

photoOur new hotel couldn’t have been more amazing. At check in they upgraded us to a beautiful view and added a bunch of stuff to make our stay more comfortable, just because. After sleeping in a bit and a lovely breakfast we were off to share our new world with Jared and Chloe, it was really exciting. Jared was amazed by how people drive in Boston and how well I manage it. Chloe had a million questions about everything and Claire was so calm, so happy to have us all together, trekking off to do what we can to make life with Rett Syndrome a little better. I enjoyed just how easy it all is when we are all together, a complete team makes such a difference.

Chloe watched Claire get hooked up and get to the important business of watching movies while monitored. It was so relaxed and natural, to all be in a little room, watching a movie with wires all over Claire and several cameras. I suppose it could be sad that we spend that much time in doctors offices but it is just so awesome that we all enjoy doing it together, it’s a gift that I treasure for now. At the break Claire took Chloe upstairs to get her going on her test. She loved watching her little sister bravely get set up and educate all the researchers about the Pirate Fairies. Chloe did so well, I just can’t say how proud of her I am for choosing to be as involved as she is. 10001413_10201812671463474_4046510614387931314_nAfter the days data had been gathered we headed out on the town for a little adventure. Claire and I had been wanting to see the finish line from the marathon. As we walked up to it I nearly lost my breath. My friends were part of Team Rett last year and they didn’t get to cross that finish line. Much like they didn’t get to see their daughters blow out their own candles on their 3rd birthday cake. Something that seemed so certain and taken away so suddenly. Yet, soon they are coming back. This year they have raised far more money and awareness as they come back stronger. And there I stood, at that finish line, with Claire, the day before we start what might be treatment for Rett Syndrome. A treatment that might allow Claire to blow out her own candles, with her own breathe. There is something really special about not getting to finish and going back, in a way I feel like this trial is a bit like that for us. 10154259_10151992569710880_6076214292283447961_nChloe was exhausted so we went back to the hotel after that. Much to our surprise, just after we got to our room there was a knock at the door. The chef from breakfast sent up chocolate covered strawberries, an assortment of juices and some wine along with a lovely note. In about 15 seconds that simple gift transformed Chloe from an overtired and whiny 4.5 year into the most grateful, happy little human. It was amazing how the timing couldn’t have been better. That night we stayed low key at the hotel and tried to go to bed early before our big day that started at 8am at the hospital. photoI wasn’t really surprised when Claire woke up early this morning. She typically takes a little while to warm up but not today. Today she was ready to go, ready to be done with Rett Syndrome. We got ourselves together as quickly as we could, ate breakfast and headed over for “the big appointment”. There was lots of boring formalities and such but Claire had her game face on and was ready to go. She was done testing, she wanted to start the shots. She meant business. photoIt all went well. We had a lot of laughs with the doctors as they asked us a million questions. Claire was weighed again and all of the papers were filled out with directions so we don’t screw it up. Eventually a really fun and smart nurse came in and walked me through giving Claire her first shot. Claire was fine, I nearly passed out. I hadn’t anticipated what it would be like to give her a shot like this, it was a thing, a very big thing. And once that was over we checked her blood sugar and headed out of town. photoThe whole thing is just crazy awesome really. I am sitting on a plane somewhere over Colorado. I just gave Claire her second dose (yes, on the airplane) and now she is sleeping. Her body is calm so far from the spastic sleep she experienced on our last flight home. I don’t think it’s the medicine. I think that it is us fighting for her. Claire knows that we are not joking when we say we will do anything to get her better. There is a peace that has filled her body just from the process. It’s come from meeting several other families with Rett, from seeing the finish line and talking about all those that are running so that one day she car, from being with doctors and soaking in their words as they talk about the future of research and Rett Syndrome. It is all just so good or as Chloe has started to call it, Boston Awesome. photo

Definitely an Adventure

 

It has only been 5 days since I last posted but it has been a very full 5 days. If you define adventure as the moment that everything goes wrong, well I would say we are there. Somehow, at the same time just as much is going right and we are having a pretty wicked good time. Claire was happy that Wednesday and Thursday had testing that required a little more work. She was underwhelmed that the first day was just being monitored while we watched movies and welcomed the more active tests. photo 1 photo 3While the testing got more fun, life away still wasn’t easy. I wasn’t sleeping well as our hotel was right by the big hospital and some sort of construction yard that moved giant loud things early in the morning. By Thursday I was desperate for a win so we decided to go to the American Girl store for dinner. It was 30 minutes away but we had plenty of time to spare and really needed some fun. Just as we got close Claire had a pretty good seizure and my phone completely died, it was far from the fun that we had hoped for. In the midst of it we met some of the kindest people. The server at the AG cafe was beyond wonderful and charged my phone while we dined. The only other group eating made a point to say hi and how cool Claire’s chair was as well as comment on her sheer beauty. Claire was more interested in the fries but at least she could let me know what she wanted, food. photo 5I was mildly renewed as we went back for our final night before Jared and Chloe joined us and we got out-of-town. I imagine it’s a little like you might feel half way into a marathon, right before you get a little tail wind. Friday morning we checked out and went in for an echocardiogram. Claire handled it like a pro, as she always does. She held so still the tech couldn’t believe what good pictures she got of Claire’s heart. I am just so proud of her.

Once the testing was done we got to go have some real fun! We had 8 hours between when we were done and when we needed to go get Jared and Chloe. Earlier in the week, when I was down I asked my friend Kim if there was any chance of connecting us with tickets to the Red Sox game, which happened to fall right in that window. Apparently it was their home opener which is why I couldn’t find tickets, this game was a really big deal. Prayers were answered her son-in-law, Steven Wright (watch for him #35 I hear he’s got a heck of a knuckleball) was able to get Claire and I in for her first baseball and it was nothing short of amazing. To start there was Danny the usher, who moved Claire’s chair to a safe place while we sat in the real seats and came and checked on me every few innings to ask if I needed anything. Then there was the complete stranger who gave Claire is warm jacket on top of her blanket and the other stranger who gave Claire a knit hat to keep her ears warm. I was blown away by how wonderful everyone we met was. Eventually we got cold and went back to the wheelchair area. Claire got her own hat and another blanket to keep warm because she really wanted to stay and watch the game. photo 1

The girl loves baseball and it was such a gift to watch her take it all in! I think I see more games in our future. As we left some nice guy came toward Claire and handed him his opening day hat. He got down and told her how she is a hero. We said thanks and got on our way, excited to surprise Jared and Chloe at security. It was wonderful to have the rest of our crew join us even if Chloe was miserable and sick.

Before we headed out-of-town we went to grab some food. Our friend told us about this great pizza place that was close and even called to get us a table. We sat in the back of this quaint little place, both of us in shock, that we were all together, in Boston, so good and so surreal. Then, out of nowhere, this guy walks up and says, hey, I remember you, that’s my hat! It was the guy from Fenway, SMALL WORLD! IMG_4269

He introduced himself and we talked a little, he wanted to introduce us to his family. As we left we went by their table and all 20 of them clapped for Claire. Again, he got down on his knees to talk to Claire and tell her of his admiration. This could have been really creepy, but this guy was so authentic and genuine. He told us how his dad was a doctor and he was in the field. It was sorta cool for a complete stranger to address Claire as the rockstar that she is.

After that we ran through the freezing rain to the car and drove out to Cape Cod. It was so nice to get away from Children’s and go rest for a few days. The picture doesn’t do it justice but I went from waking up to the top picture all week and then the view on bottom for the weekend. It was peace and quiet that our whole family deeply needed. FrameMagicWe were all so tired. Both Jared and I had marathon weeks. Chloe has been exhausted from being sick and Claire loves life at this speed so it’s been great all the way around. Just to keep things from getting too comfy Claire’s wheelchair broke.

photo 3It’s a very vulnerable feeling to be away from it all, on the other side of the country with several days before you get home and have your fragile child’s wheelchair that you depend on break. Thankfully Jared was with me because somehow, when we are together this sort of stuff doesn’t phase us. We laughed it off and asked the rett mom we were meeting in the morning if she could spare some duct tape for us, problem solved. This morning we got to meet up with Jillian and her fabulous mom Jennifer. Claire was very excited to be with our extended rett family, for that matter, we all were. photo 4Our rest away is just about wrapped up. I will take Chloe to urgent care before we head back to Boston in the morning, hopefully it will be a very quick and boring visit.  Claire has two final days of stuff for the study before we fly home Wednesday night. It’s been a long trip with so many ups and down but we are better for it. Maybe it’s because I am delusionally tired but I really think that once we get home and rested I will look back and be better for all the steps on this journey. Already I am so thankful for all the paths that we have crossed. Strangers, facebook friends, random hospital people, we have connected with so many and it has been a beautiful gift. Thanks for bearing through the wordiness of this post as I am too tired to edit. Hopefully the next one will be much more succinct

Two Days In

As I sit down tonight I struggle to say much more than we made it through the first two days. It has been exhausting. Yesterday was cold and blowing ice so we stayed in our hotel room while we recovered from our red-eye across the country. It was very hard, it was very quiet. The quiet pierced me more than it typically does, perhaps because I was insanely tired. It magnified why exactly we are here. At home, when Chloe is playing with Claire or at school among friends that love her, I see the problem less. Here, just the two of us it is blatantly clear and it is terrifying. I am reminded of how fragile Claire is and how restricted she is, despite our efforts to make her life awesome, and it is.

After sobbing while I fed her dinner last night and apologizing for being a wreck we both attempted to sleep. While it worked better than it did in the airplane the improvement was very slight. I woke up with a raging headache. By mid day my back and shoulders were yelling at me. It felt like somebody was sticking their thumbs through the back of my skull and attempting to push my brain out my eyes. I slowly stretched and drank as much water as I could as I suspect dehydration was at the root of this. Through it all, Claire was a champ. She was gracious with me and clear in her requests. She really wanted clam chowder and we had agreed to not eat dinner in the room each night, so I agreed.

Claire was happy that we only had 5 minutes left when this was taken. Sometimes world changing is boring work.
Claire was happy that we only had 5 minutes left when this was taken. Sometimes world changing is boring work.

We found a nice big mall to walk around in. Claire picked out a few items for an in room spa night later in the week and some aromatherpy for our pillows in an effort to get better sleep. We found a place with Chowda and sat down to eat. That is when I found out that Chloe needed to be picked up from school because she has a fever. Claire endured me being on the phone during our special dinner out (my soul cringes at this) and as soon as we were done we headed back to the hotel as we were both exhausted.

On our way back I made my first wrong turn of the trip and had to make some tricky maneuvers to fix it just as Chloe called, so sad, sick and missing her mommy. My headache raged as we drove into the sun. Jared called and I broke down (poor guy, he gets most of my crazy) Chloe’s sick, I feel horrible, Claire still has Rett Syndrome and all I want is for our little family to be together. He reassured me and we got back to the hotel without further incident.

I gathered up Claire and our bags and stumbled into the lobby where the lady at the front desk gasped as she saw me, ‘hold on’ she called out. Ugh, I turn around and there are flowers for us. Captain Awesome managed to have flowers waiting for me less than 5 minutes after I completely lost it and nearly gave up. The perfect flowers too, the ones from our wedding and a butterfly, a symbol of strength that I have been holding on to. I am so blessed to get to do this with Jared’s support, I really couldn’t do it otherwise.

Traveling for clinical trials is very hard. Physically, emotionally, financially, psychologically, it is hard on every level. It is not a vacation even though we will work hard to lace fun things through out the process. One of the coolest things about our Rett family is how supportive you all are. Keep it up, thank you for the encouragement that you are sending our way. Let’s make a point to remember that every family in a clinical trial is walking with an amazingly heavy load on their back. It is an honor to get to be doing this but it also a very difficult process.

The Best and Worst

photoDays like this remind me of A Tale of Two Cities. “It was the best of times, it was the worst of times.” Yesterday I woke and checked my inbox to see if we had received confirmation from Boston. While there was no news on that front I learned that the world lost a beautiful soul that morning. Brianna had been fighting to recover from a pneumonia for a while and Monday morning she was set free, to dance and use her body as she pleased in heaven. I nearly choked on the knot in my throat and lost my breath for a moment, perhaps this is how Claire often feels. I took the girls to school and basqued in the vivaciousness of their laughter.

Once they were both in school I called Boston again, nothing. If ever there was a time that I would like to feel like I was doing something, it was that moment. Would we be able to give back to our community by participating in this trial? How many more friends will we lose before help is available. I sat and watched the waves as that seemed to be the limit of what I could do in that hour. I prayed, I breathed and I opened my hands. I sat in the sand and cried, for the family that had to leave the hospital without their child after such a long fight, for Claire as I know she is so ready to be done with it and we are such a long way away. I thought about the overwhelming task of going to Boston if we are excepted and about what we do if we aren’t able to go.

I gathered myself and figured that either way, I had to get some sort of grip on our life as the fridge is completely empty and there isn’t a clean pair of socks to be found in our home. I called friends to distract myself and pass the time. Then I called Boston again, just in case there had been some change in the last 90 minutes and it’s a good thing because there was. The research assistant answered and replied that she was just about to call me. The team was done reviewing the neurology records and decided that we qualified to participate in the trial now. “You can finally be excited now.” It started in September, we waited and waited some more. Then we went to Boston and waited some more and now, now we can be excited.

I nearly passed out, then I felt like I might puke, I cried some more and began to share our exciting news. October 2007 we were told that Claire had Rett Syndrome and that there was nothing we could do. We were told she might just die in her sleep or that she might live a long life. We’ve seen too many of Claire’s Rett sisters leave us too soon. But today, today we are given a chance to change that. This treatment might help Claire with breathing and if it does that would change our world on epic levels.

So while my heart broke, it also soared. As the day went on and Claire got to share her news with those that we saw I learned of another two girls with Rett Syndrome that left this world. Three in the same day, so bizarre, it’s unfathomable that it happens at all, but 3 in the same day?!?! At the end of the day, after the girls had been kissed and tucked in I sat and tried to wrap my head around the events of the day. We are going to Boston, Claire will receive treatment, families are grieving and friends are pulling together. What a whacked out and beautiful scene it is. I remember the soft sound of the waves and the uncertainty that swirled around in my head. There is still so much that is yet to be known and figure out but what I do know is that right now, with what we’ve got we are doing the very best that we can. And it is enough.

And Done!

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It’s been about 36 hours since my last post and I am exactly where I was when I wrote that, 35,000 feet above the middle of our country. A lot has happened in that short time. Just after I hit publish Claire started a series of seizures, it wasn’t too bad. We got off the plane and it all hit me like a ton of bricks. Finding a ride to the hotel really overwhelmed me for some reason. Once we made it there I found out that the hotel stunk and I had a hard time finding food options. That’s when I ended up crying as I sat at a table in a crap restaurant feeding Claire Kraft mac’n’cheese. All of the unknowns just came crashing down on me.

We went up to the room where the next wave of seizures started and it was a very long night. I laid awake listening to her shallow rapid breathing in between brain storms, waiting for her to stabilize. Eventually she did and I got a little sleep. The last round came at 6 am and she was able to fall back to sleep for one last power nap before we had to be at the hospital at 8 am. I got everything ready to go, got her up and off we went. I asked which way the hospital was as we walked out the door into the cold and onto the next leg of our adventure. It was a short walk and we quickly found our way to where we were expected and that is when everything turned again.

As we rolled up, in the way that is so uniquely Claire she just relaxed into it all. I imagine that she had a raging headache from the long night and she was fasting but her soft smile said that it was all good, and it was. She laughed on cue as we filled out the paperwork, sat still as they drew an amazing amount of blood, held on to stand for her weight and jumped through all of the other hoops with the greatest of ease. As the nurse was filling all of the tubes of blood Claire looked on with great pride. As obvious as it sounds, she really enjoyed getting to do something herself. Even if that meant being a test subject. She seemed to relish the ability to do what she could to help, qot do something bigger than herself and I have never been prouder of her.

After all was said and done we met up with another mom and her daughter that were there for their appointments. It was great to be on the other side and just sit and talk about life, rett and trials. She gave me some tips on cabs and such and we were off to the airport. Claire took in the sights of the different buildings as we made our way through town like the rockstar that she is with all of the confidence in the world. Confidence that came from doing what she could, which in this case is changing the world as we know it.

Once at the airport security seemed to take particular issue with us and it took forever. We rushed back to the gate as they called me over the speaker by name. With that, the kind people at Virgin took my bags for me and helped me to the plane. Before sitting down Claire said hi to the captain and got her wings while she sat in his chair. She was so stoked, it all felt so normal, because normal is flying home 24 hours after landing, right?

Well maybe it’s not normal but it is awesome and I do love that. A big part of what made this trip so awesome was all of the text messages, prayers and online love that I got from people as we went about the journey. This adventure is so much bigger than that us and we couldn’t be doing it without everyone out there. Thank you so much for cheering us on, it really made this very scary journey a lot easier.

And Go!

 

10006198_10151954711455880_1428718557_nMy last post I shared my mixed emotions about all of our upcoming adventures. Now I sit, 35,000 feet up in the sky and it is nothing but sheer joy. Certainly it was hard to say good-bye to Chloe and Jared but Claire and I are having a blast. For 3 hours Claire has been hanging out, watching some videos, eating, nothing too exciting but she is just so calm. There is an overwhelming sense of support and love from the people in our life, thank you for all of the texts and facebook love. Both myself and Claire deeply appreciate the knowledge that we are not doing this alone.

There is something about being on the plane to Boston that I actually feel like I might be able to help Claire in a very real way. As I think about this if literally feels like weight lifting from my shoulders. As I sat back thinking about it all I noticed Claire point to her ear as she grew a little uncomfortable. I told her some juice would relieve the pain and it did. It was awe-inspiring to see her use her body like that and it allowed me to imagine what else could be possible.

Sure I was still super awkward helping her in and out of the small airplane lavatory but instead of frustration she laughed. Audible Claire laughs are so rare and I got one hunched over trying to put her pants on while she pulled my hair for balance, it was marvelous. She had a giant grin on her face as we walked back to our seats. She spoke to each of the first class passengers. She passed them using her proud confident eyes voice and each of them listened very carefully. I love getting to watch Claire do her thing, inspiring people just by being herself.

I don’t know what chaos or adventure is ahead for us on this leg.  But I am optimistic to have things start on this foot. I am so relieved to be to the part where we are doing it. After all of the hard stuff, feeling the vulnerability or stepping out there, it really is amazing to get to relax into the good part and I am looking forward to watching it unfold. Thank you so much to each of you out there for keeping us company on this adventure in Rettland, we couldn’t be doing it without you.

Everyone is excited for Boston, I’m not.

We’ve been talking about it for a while, all of the excitement about the IGF-1 trial in Boston. It started at an IRSF conference that I went to where I heard doctors discuss the promising research. I talked about it with our neurologist once I returned. I was so excited that maybe within 3-5 years there might be a medication to help Claire. Claire’s response was different. Tears streamed down her face and her lip quivered as she used her eye gaze computer to tell me “long, hard, live.” To a five year old that must have seemed like an eternity.

It was just two and a half years later that we were accepted to come for our screening visit and it will be under 3 years when we start the trial. It seems like such an exciting thing. Everyone we talk to is excited for us, they can’t wait to see what Claire might be able to do. It is exciting, it is world changing and that is a huge thing. Yet I wouldn’t say I am excited. Right now I feel more terrified, overwhelmed, unsure and fearful. After all, I only applied for the trial after I was dared to dream bigger and more audaciously than I ever had before. I knew that my big dreams would lead me into unsafe territory, if it felt safe the dream wouldn’t be that big.

You might wonder, why all of the negative emotion, treatment for Rett Syndrome is such a good thing. It is. I want treatment for the girls, for their sisters and brothers, their mothers and fathers and their friends just as badly as everyone else. But it is a change, it is unknown. It has taken a great deal of work but we have come to a place of thriving inside Rett Syndrome, the way it is. We have adapted to the seizures and the stiffness. We have integrated communication strategies to reduce everyones frustration. It has been six and a half years since we heard the words “positive for Rett Syndrome” and we are finally getting into the swing of things.

Just as we settle in to our nice little life, it felt like an atom bomb landing in our lap when we were notified that we could go to Boston and participate in this trial. If the medication doesn’t change our life I am pretty sure that 7 trips to Boston and at least 50 nights in hotel inside of 66 weeks will. It’s an adventure, if it didn’t shape us that would be a crying shame.

So I start to prepare for our flight Monday with an uneasy stomach. I start to think about what to pack and I lose my breath and get a little light headed. That is what life feels like when you are doing things that terrify you. The lesson that I am learning in this is that just because it is scary doesn’t mean you shouldn’t do it. It just means it is scary and shouldn’t be done alone. So I lean in to those closest to me for comfort and those of you out there to help me remember why we are doing this. We are doing this not because it is easy or convenient but because Rett Syndrome isn’t. Because UNLESS someone like you cares a whole awful lot, Nothing is going to get better. It’s not.

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Ready to be done

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Chloe our precocious 4 year old and super sister just burst into the room as I sat reading. Out of breath she exclaimed, “Mommy, I’m working on teaching Claire because she’s ready to be done with Rett Syndrome” and she ran back off to her sister to resume their work.

I didn’t really know how to respond, I told her good job. I was in awe. How does her little mind know how important rehab medicine is? How does she know that she is equipped better than anyone to do this work with Claire. How does she know that Claire is ready to be done with Rett Syndrome?

It is possible that she hears a lot as we plan for our upcoming appointments in Boston. In 6 weeks, Claire will be enrolled in a clinical trial and will be receiving either the placebo or the treatment. More than that, Chloe listens to Claire like no one else. It’s hard to put into words, the mysterious sister bond that connects them.

Over the weekend Claire’s brain was ravaged by seizures. It took her several days to recover and today she is doing very well. Maybe this is what Chloe is referring to. Not the treatment, but that Claire is ready to play again, to laugh with her, to do the things that RTT doesn’t stop her from.

I suppose it doesn’t really matter and it’s likely I will never find out what exactly she meant in that moment. Her enthusiasm for helping her sister and the urgency that she approaches it with is a good reminder. As much as I try to make peace with it, to accept Claire so that it hurts less, at the end of the day, we are all ready to be done with it. Ready to be working on the getting better part.

 

The Time is Now

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There is a bit of a conundrum in Rettland. We have all worked hard to raise money for research. Now that there are trials, they aren’t full because participation in them requires more than what most families have to give. I have decided to attempt to bridge this gap for the IGF-1 trial. My reason for picking this one is simple, it’s the one that we got into and I want to see that data transform into help for all of the families affected by Rett Syndrome. A half full study won’t do that. I have heard from too many people 1. We would do it but we can’t afford it. or 2. We would do it but our daughter isn’t eligible. So, I have gone and lost my mind and started a fund. My hope is to get enough money to provide awards to enough families to get the trial full. While living in a world where trials are starting is great, wouldn’t it be better to live in a world where trials have concluded, researchers have learned and we are closer to Rett Syndrome being treatable. That’s my dream. If you would like to help, please visit my page http://www.gofundme.com/curerett