Caitlin Dickey's Journal
Written May 6, 2013 10:57pm
There have been several changes since last check in that we are concerned about. Caitlin has been very lethargic. She is also having a hard time eating. She can swallow, it just takes a very.long.time.to.eat. Around her mouth also continues to be numb. It is getting hard to drink through a straw, especially when tired. When she can't drink through a straw, we use a large syringe.
We have requested another MRI. Everyone is in agreement, we just need to know details, hopefully by tomorrow. Yes, we just had a positive MRI 2 weeks ago, but with these changes and the nature of the beast, anything is possible...
Pain-wise, things are getting better. I started her on a supplement Wednesday which coincided with lessening the pain. Could it be possible? Well, yes, but there is also another worry that her lethargy or growth is dampening the ability to feel the pain as much. Just too many things running through our heads.
Caitlin continues to be extremely sad about her situation. I encourage her to talk openly to us. Tonight, she asked me why she got cancer. Well, I wish I knew. I asked her why it is so much harder this time (very well knowing the answer). She said, because she couldn't play with her friends. And speaking of friends, she has the most wonderful, loyal, loving group of friends. They are with her through thick and thin, holding her hands, reading to her, doing her nails. She is loved, truly. And we are so grateful for those friends. She loves her friends being around her, but inside, she knows she can't play with them the way she used to. It breaks my heart to see her so sad.
Friday, we were able to get Caitlin to school! She was so happy to be there. She had a bunch of smiles, which we hadn't seen in awhile. There were posters in the hallway advertising an upcoming Alex's Lemonade Stand in her honor and collecting soda tabs for the Ronald McDonald House. Thank you JLIS! She was tired, so we did not stay too long. When leaving, she was really sad. She misses being at school. She misses being able to interact with her peers like a normal kid.
Saturday, both Jakob and Caitlin had a great honor for the Southern Lehigh Baseball League! Every year, there is a kickoff baseball day introducing all of the teams. One person usually throws the first pitch. This year, Caitlin tossed the ball to Jakob and Jakob Threw the ball to Jim! Jim spoke a few words and did a great job. Thank you for making our Super Sib Jakob feel special and including Caitlin, while letting us spread awareness.
Later that day, we headed down to the Miracle League field for welcoming day. She picked up her jersey and hat and she is all ready for her first game next Sunday!
Things are getting big for the May 17th Zumba event benefitting the Pediatric Foundation of the Lehigh Valley! We are getting really excited! If anyone is interested in donating a basket or raffle item, please let me know and I will point you in the right direction! It will be held in the Southern Lehigh High School gym - so plenty of room to shake your booty! Thank you Kristin, and all of the instructors, for caring so much for our girl! http://pcflv.org/news/zumba-for-caitlin
There will also be an Alex's Lemonade Stand in honor of Caitlin at the Coopersburg 5k on May 25th! Caitlin has actually previously represented Make a Wish at this run for a few years (part of the race proceeds benefit MAW!). It is usually really HOT and after a big run, lemonade should hit the spot! Thank you Melodie for setting this up! For those unable to make the race, the stand page is: http://www.alexlemonade.org/mypage/111099
Please continue to keep Caitlin and our entire family in your prayers. We know something is going on, things are just not right... We want to hear her giggles again...
Written Apr 30, 2013 10:50pm
We've continued to deal with pain on a day to day basis. This morning, I woke up and was surprised, and relieved, Caitlin did not mention pain. A few minutes later she complained of reflux. No problem, that is an easy fix. A few minutes later, she was complaining that her head was dizzy. It was dizzy for quite a bit of time. A little bit later, her knee and shin started hurting. Her face around her mouth and right cheek have also been numb more often. During this time, we were in contact with CHOP and her nurse. She just seemed a bit off. We agreed to head into CHOP to get checked out.
There were no big revelations on why this has happened. Caitlin just seems to be a complex case, nothing is simple. We will be keeping an eye on her and if the symptoms continue, we will have another mri. Didn't we get one a week ago? Yes, but even we have experienced the very extremely quick changes within one months time. You just don't know...
We're hoping to get a meeting soon with the pain clinic (a different area). In the meantime, we are trying new things, including natural supplements, to help ease the pain.
Since we were at clinic, we were cleared to have her Avastin 2 days early. This saves us on a trip for this Thursday. They had also hinted before that they would like to move us on Tuesdays because the other days are so over crowded, so this change works out on their end too.
Sadly, we had a planned visit to Caitlin's school today. We truly wanted to make it work. She did too, she misses her friends so much. We just felt that she would not enjoy it if she was in the pain or tired like she was today. She agreed, but she was sad it wouldn't be today. Hoping to try it again later on this week. She is sad daily missing her friends. She gets great visits from friends, but she wants to go to school. She cries daily that she wishes she didn't have cancer...
Last Thursday, we brought the kids in to "Take Your Child to Work Day" at Ingersoll Rand. This was Caitlin's first big outing where she would be sitting in her chair for the majority of the day. IR does an outstanding job for these events. Both kids went last year too and enjoyed it. Caitlin really wanted to go and wanted to stay the whole time. She dealt with a bit of pain while there and was pretty fatigued. Just being there, though, was good for her.
Jim is starting to achieve Indy pit crew status with dismantling and putting Caitlin's chair back together for car rides! It is getting "a little" easier getting her out. We headed to Friendly's (per Caitlin's request) again this weekend!
We have experienced generosity from everywhere. One such occurrence came in form of a ramp for our front steps. Thanks goes out to Bob, from Basement Builders of the Lehigh Valley, who offered to build us a safe ramp to take Caitlin in and out of the house with. It exceeded our expectations and I feel confident, myself, to bring her outside without worrying about getting up and down safely. Bob has finished several basements in our neighborhood and does a beautiful job. Thank you for your generosity!
Tomorrow starts the beginning of Brain Tumor Awareness Month. Awareness starts with knowing what is and is not out there to help our warriors. Children are different. We need more gentle treatments. We need more effective treatments. We need cures. Awareness => Funding => Research => Cures. We are well aware, are you?
Written Apr 23, 2013 10:17pm
Breathing a sigh of relief!! The scan looks BETTER!!!! There was significant radiographical improvement showing shrinkage of the tumors and it is less enhanced!
Dr. Phillips pulled up the last scan and new one side by side. I held my breath before he made it evident of which one was which! I mean, the one on the left looked like the last ugly one, but I still questioned it until he confirmed it!
There is one new spot that was on the left side of her brain that was not there before. Or, because it was so small (2mm) and slices are done in 4mm slices, it may have been there before, but we missed it. Not going to stress about it yet. Focussing on the positive changes!
We are working on different things for her pain management and hope it will start helping her more. We have also been given the green light to start weaning her steroid again! So thankful for that. She is getting ravenous about food again and gets quite upset if we try to gently veer her attention away from wanting something more.
Even with the actual changes within her brain, she remains stable from a clinical standpoint. She has not made much improvement in speach or mobility. We are told that sometimes scan improvements can precede clinical improvements or vice versa. There is no telling. Praying to see those changes.
We started the day out early. Jim got initiated into sitting in the MRI room with Caitlin - it also gave him a chance to catch up on all celebrity trash gossip to top off the MRI ritual ;-) (I know he's wishing he brought his own magazines)! Both Caitlin and Jim did great! The nurse did say that just before starting, Caitlin started crying a lot, and the reason was, she missed her friends :(
After finishing up on the MRI, we headed over to clinic for results.
We are feeling quite relieved today. We still have a long way to go and are still will always be on guard, but we are so relieved that today, it is going the way it should.
On to more fun and light things :)
We have been trying to get her outside a little more. This weekend, our neighborhood held a yard sale. Caitlin's friends decided to hold a lemonade stand. We hung out with them for half of the day outside, even though it was cold and windy! Caitlin loved it! At the end of the sale, her two friends handed over the money to Caitlin! She has not decided where it will go yet, but she wants it to go to a charity of her choice :) I love her friends! She really does have true friendships with kids that will always look after her and be by her side.
Yesterday was a super fun and special day for our Super Sib Jakob! Home Depot came to Jakob's school and Jakob got to host a kids workshop for his class! I was so happy I was able to break away for a bit and join the kids! They all got a choose one of 5 projects to work on and split up in groups. Jakob chose the flower pot because they brought flowers to plant :) Our local Home Depot has been so supportive during Caitlin's fight. Both kids have been going to their kid's workshops since they could hold a hammer! We appreciate that they included our little guy in a special activity - and included his classmates! They plan on doing something with Caitlin soon too and have a few other things in the works. Thank you Sarah and Home Depot! You have truly gone above and beyond doing special things for Caitlin and Jakob!
On May 17th, an exciting event to benefit the Pediatric Cancer Foundation of the Lehigh will be held! "Get your shake on! Join us at Southern Lehigh High School for a Latin-inspired, calorie-burning, Zumba® event in honor of Caitlin, to support the Pediatric Cancer Foundation of the Lehigh Valley! All ages and experiences welcome! Children under 10 can do the Zumbatomic® Class offered from 4:30 to 5:30 and adults (kids 10 and older) can do the Zumbathon® from 7pm to 9pm. Raffle prizes and fun for all ages!" Thank you to Kristin and many others who are putting this event on to honor Caitlin! These events always look like so much fun and I'm hoping we get a big showing! No experience is needed! Visit "http://pcflv.org/news/zumba-for-caitlin" to register or donate.
Next clinic day is May 2nd, so if you don't hear from us before then - no worries :)
Thank you again for all of your thoughts and prayers. We still live day by day, sometimes hour by hour, but having support in all forms has helped us through this!