Caitlin Dickey's Journal
Written May 11, 2013 10:05pm
We are now home. Yesterday as we left the hospital, it was very emotional. CHOP, Hope lives here. That is their motto. It has always given us hope to be there. We are now told that there is nothing more that can be done to help her. And it is not just CHOP saying that, the history of this brain tumor and what is out there (or lack there of) backs that up. We have not given up, we are keeping her healthy, giving her supplements, searching for more hope and praying for a miracle. We are also keeping her comfortable so she does not suffer.
I walked past the playroom where Caitlin had her first day of Kindergarten. I walked down the halls of so many memories. Did you know Jakob potty trained in the PICU? Yeah, we have a picture to embarass and show to all of his girlfriends :). Caitlin played another gameshow game over the CHOP network and won. I cried when retrieving the prize. We know we've been in the right place. We never had a doubt of that. We always knew Dr. Phillips was the right person for the job. He is broken over this too, we do know that.
Caitlin is happy to be home. Jakob is happy we are home. We are happy to be home.
Last night, I was dreaming of a beeping noise, only, I realized it was Caitlin's pulse ox actually beeping. Her numbers were good, but would intermittantly go lower. It could be I need to replace the finger sticker, and it could mean her breathing was just a little off. I could not sleep for a long time. This morning, Jim admitted he was up around the same time (he was upstairs). The hospital said it was ok to no longer monitor her like that. We will continue to do so though. It is a comfort that if something does happen in the middle of the night, we will be awakened.
This morning was our first experience of giving Caitlin all of her meds and setting up her feeding through her NG tube at once. It is a learning curve as it took over an hour getting all of the meds measured out, etc. Now that I've had a day's training, the night's med routine went much more smooth :) We've converted all of her supplements to liquid too. The comfort is, no matter what, she is getting her nutrition and fluids. No more stressing. She still does want to eat though. A small bite seems to suffice the craving and it usually just sits there in her mouth for awhile :(
This morning, Jim and I sat down with Jakob and told him what was happening. The three of us sat down and cried. Jakob is a smart boy, he knows things haven't been right. But just to hear that his sister may not be around long hurts. We all have bracelets on that Caitlin's cousin Hannah made. Grey for brain tumor awareness and purple because that is one of Caitlin's favorite colors. Jakob's was off and he got off the bed and got his on. He knows he needs to be strong. He bounced back for Caitlin and went on with his day, but is being very snuggly and is still very sad. Tonight before going to bed, Jakob read Caitlin a bedtime story, so sweet :)
We have not talked to Caitlin about it. We have been encouraged to have Caitlin-led discussions, which we agree. If she asks questions, we will answer directly. She has not asked anything beyond "why did I get cancer". One thing she does know is, how loved she is. Oh, she is loved so dearly!
Caitlin had some great visits with some of her closest friends. It was a busy day. She rarely physically smiles anymore, but she definitely got some chuckles out today.
June 6th is Caitlin's 10th Birthday. We will be celebrating all month long. Tomorrow at her Miracle League game, there will be a special celebration. A few other things are in the works as well.
Friday will be the Zumbathon in Caitlin's honor! We hope she is up to attending the first part for the kids. I know there are special music requests being fulfilled for her :) It is going to be big! Everyone is welcome - no experience needed! If you ever wanted to just try Zumba out, this is a fun way to join in, and it is for a great cause :) Tickets can be purchased online or at the door. All of the instructors and a few others, including myself, have tickets to sell in advance too. Thank you to all who are donating to the raffle! So thankful for so many people in our lives honoring her in ways that mean so much! http://pcflv.org/news/zumba-for-caitlin
Thank you who have been sharing Caitlin's story! She is one unique girl and is so loved. We have received so many messages, emails, etc and appreciate every one of them. It is getting hard to respond to everything, but please know that it is all very much appreciated!
As I look at what I typed above, I feel guilty. Guilty that it looks like we have given up - we have not. Caitlin had a pretty long nap this afternoon. She woke up with her speech a bit more clear and her arms moving around more. Things like that give us a little bit more hope.
To all of the Mother's out there, especially my Mom, Jim's Mom, My Grandma, both sister/sister in laws (and the list goes on!), Happy Mother's Day!
We will try to update every few days. Thank you so much for supporting us during this tough time.
Written May 9, 2013 10:53am
Devastated does not even touch how we are feeling today.
Caitlin's MRI just over two weeks ago showed improvements, but now the tumor has grown. A lot. It has grown up, down, and spread farther out. Against all efforts, no therapies so far have shown a long term effect.
Our job now is to take care of pain, hunger and anxiety. All of those are being addressed, and then we are going home. She will be getting an NG tube today. This will give her food, fluids, and meds.
We will be going home for sure on Friday.
She will continue to get more sleepy. She is still talking, but that may go at some point, too.
We don't have a time, but 2 weeks to 3 months is our reality. No one truly knows. We haven't given up on a miracle, but the cards are stacked against us. We also haven't given up on other possibilities, however, we were advised her current status is irreversable.
This all seems so surreal. This isn't something happening to us, right?! This is painful. Painful to see her in such discomfort. Painful to see her so sad. Painful to see what cancer has done to our daughter. Painful to think of life without our precious daughter...
May is Brain Tumor Awareness Month. If you share Caitlin's story just once, you will show people out there what kids like Caitlin are going through. This should not be happening. I ask the same question Caitlin asked me the other day "WHY?"
Cherishing our time is our job now. Please hug your kids and family tight tonight and every day. Life is precious and we must embrace it.
Written May 8, 2013 10:51pm
Just a quick update, as it is late!
Caitlin had her MRI tonight at 6. We asked to come in a bit earlier to get accessed in clinic and get fluids. Her fluid intake at home has been awful. We continuously give her sips and food, but she is so fatigued and just doesn't let it slide down easily. It has been a really tiring challenge.
Jim dropped Caitlin and I off at the curb once we got to CHOP. In a rush, Jim lifted Caitlin from the car to the chair and tripped on the curb... My.Heart.Stopped! Jim was quick to cushion the blow and was cradling her, but she did hit her head slightly on the ground. I think the worst of it was the startle. We got her right up and checked her out. She seemed fine. Good thing we were headed to an MRI...
Because of her latest status changes (fatigue/eating/drinking), and also the fall, they decided they wanted to admit her for observation. Even without the fall, Jim and I were going to suggest this. She is now hooked up on fluids, so at least we know she is getting enough while here!
We are hoping to be back home tomorrow.
No MRI results yet. We will get those in the morning.
Thanks for all of your thoughts and prayers.