Thursday Traditions

Getting ready to list for transplant has made me feel a strong urge to document more of my daily life with Kaylee. Just in case. I know that sounds morbid and I promise I am hopeful for a future. But if things don't end well she will have a great record of our lives together. And if it does end well then we will both have a great record of our past. Win, win.




My husband has always worked late into the evening on Thursdays. There were other evenings that he works until after Kaylee is in bed, but this is one particular day I don't see him before bed either. When Kaylee was little this made for a long evening especially in the winter when we were trapped inside. Born from this less than ideal situation came my favorite tradition with my little girl.




Every Thursday Kaylee and I made homemade pizza. In the past I used to make dough with her, but admittedly have gotten lazy and started buying store bought dough in recent years. It was a fun dinner because even at a young age Kaylee and I could do it together. She would stand on her little chair next to me, we would both put on aprons and create our own pizza masterpiece. Back when the tradition first started Kaylee insisted that we only call one another "pizza lady" instead of our real names. After the pizza was done she would often be found marching around the house shouting, "Pizza for sale!"




The next part of the tradition actually started as a separate tradition that eventually merged with pizza lady Thursday. When Kaylee was little there were times that I really wanted to watch TV especially on those long winter nights. Unfortunately, I really hate kids cartoons. So I opted to watch cooking shows (we used to watch Pioneer Woman the most) because it never had inappropriate content and we both found it interesting. Kaylee would spend the entire show talking nonstop, "That looks yummy, Can we make that? I like broccoli, ooh I bet that is yummy...." and I essentially couldn't hear a single thing. But it was still better than a kids cartoon.




Fast forward to last year, and we started watching a cooking show (she loves the British Baking Show) and eating pizza on the living room floor. At first, I felt bad eating dinner while watching tv because it was so very different than how we were raised. The dinner table was for eating, not the living room floor. But then I got over it. 6 days a week we sit at the kitchen table and talk over dinner so one day eating in front of the TV can't hurt and has turned into such a fun tradition we both look forward to.




And the last part of the tradition just started last year! When my husband would come home and crawl into bed it would often wake me up and sometimes I would struggle to fall back asleep. When Kaylee got a full sized bed I realized that there was absolutely room for two people especially considering she is still so small. Thursday night I started sleeping in her bed. That way I don't wake up when my husband gets home (around 2 am) and he doesn't wake up to my early alarm. We both sleep better and Kaylee counts down the days every week for her mommy sleep over.


And now Thursdays are known as our pizza lady, baking show, sleepover nights.

Transplant Beginnings

This was a busy week CF wise for me. As of Thursday I officially had my doctor's send a request on my behalf for a transplant appointment at Stanford. It is such a mix of emotions that I have trouble sifting through my own feelings at times. I keep trying to find blogs or info on the emotional side of listing, but it seems very few people touch on this point or at least in a way that even scratches the surface of the feelings that accompany such a huge life altering decision.


For now, I will say I bounce between so many feelings and often have several opposing feelings all at once.


I am feeling relief because at this point transplant is a security plan in case I suddenly get very sick. I feel relieved knowing that if I am in an emergency situation and quickly need a transplant at least I have the process started.


I also feel terrified in a way that I have never felt before. EVERY aspect of transplant feels scary. The testing, seeing if I am accepted, the surgery, the unknown of transplant life, the statistics of transplant survival. Petrifying.


I feel like a failure! I wasn't able to "beat CF" or "not let CF get in my way" which are common phrases in the CF community that I find damaging to anyone who finds that CF does in fact find its way to be an issue. Isn't that what CF is...a progressive disease that gets more and more in your way as it progresses. I guess slogans like, "I am learning to cope with a quality life that keeps getting diminished by CF" doesn't have the same ring except it is actually much more true to most of our journeys with CF.


I feel so much sadness. You spend your whole life knowing someday you will need to consider transplant, but you never fully prepare for that day to be today. I also feel sad that we are so very close to so many CF advances and yet it will likely be too late for me to benefit from any of them. In moments of extreme worry I worry I will get a transplant, a cure will arrive and then I will die from transplant complications.


I feel so much guilt! I feel guilt that I am putting my family through this process. I feel guilt that my daughter will carry such a heavy burden so very young. I feel guilt for how my post transplant life (mainly germs and if/when complications arrive) will burden my family, but especially Kaylee.


I feel hopeful. I love the idea of breathing well. I love the idea of no more treatments. I LOVE the idea of exercising like a real human rather than a 90 year old. I love the idea of being a person with energy and the ability to be more active in life. I feel hopeful that life on the other side will feel worth it.

Daisy

I am in my second year of being a Girl Scout troop leader. The first year there was a steep learning curve, but this year I feel like I am in my groove. Working with kids is something I enjoy and have a lot of experience with, but things like cookie sales (!!!) was a lot more complicated than I thought. And oh my goodness, a lot more work than I expected. Thankfully, this time around (we are currently in the midst of cookie sales again) the whole process is much less of a mystery and at least I know what I am doing even though it is still a lot of work!


The girls are obviously all a year older than last year and I can't believe how much one measly year makes in attention span, behavior and ability to really work together! It is so much more fun now that they are getting bigger and I hope that as the girls keep getting older we can take on more ambitious activities and outings. I know eventually camping becomes a big part of girl scouts (we are trying to do an overnight at the zoo this year), but because of all my treatments and medical equipment I am not sure how that is going to be possible for me to be a part of. Having CF means roughing it is pretty impossible. I need electricity for my Vest and nebulizers at the very least. But luckily for now, our kids are still little and we aren't planning on spending a weekend in the woods anytime soon.


This school year we have gone on a few outings. Before winter breaks we went to a planetarium and a science museum. We went to a community college to look through their telescope and saw planets, a nebula, and even saw another galaxy! I took astronomy in college, but our telescopes were nothing like this so it was a super cool experience for me too! We also went caroling around Christmas and everyone went ice skating.


It has been so much fun organizing activities and going out and experiencing new things with these girls.

Science is Amazing

Christmas and New Year came and went and despite being hooked up to IVs (Avycaz) it was probably my favorite Christmas. Kaylee is young enough to still fully buy into the magic of the season, but old enough that she had a few items she reeeaaallly wanted. In the past, she used to play with everything and anything which meant she had no particular interest in any one thing. So when she asked for Christmas gifts all she wanted was "surprises" or "toys". This made shopping so much harder. This year she finally asked for specific items and spent the month leading up to Christmas so hopeful for these few items. It made shopping and gift giving so much more fun knowing how badly she wanted the gifts she received. Also, her current cat obsession meant that as long as something was cat themed she would be happy Christmas morning.


I am not sure how many more years (if any) we can pull off the Santa story so this year felt bittersweet. There have been doubts in our home about the truth behind Santa, but that Norad Santa Tracker sure helped put the seed of belief back in her mind. Watching the "video image" from the satellite she kept saying, "someone wouldn't' just dress up and ride in a sleigh to trick people..." Luckily, it never crossed her mind that the images weren't real. Maybe we can squeak out another year of believing? Or 2? Or 10? Okay, maybe not, but it was fun while it lasted.


So CF has been full on the past few months and as I was in the middle of home IVs I got a call from my doctor that may explain why I haven't been responding in the way we would hope from IVs. They found a bug in my culture (e-coli...I know it is too gross to even think about, but what can you do. Such is life). The medication I was using doesn't cover e-coli so we are going to try a different medication. I actually cultured e-coli in March and I was hospitalized for desensitization to Zosyn.


The original plan was to go back to the ICU and go through desensitization since we successfully treated it in March that way. However, apparently the ICU is a popular place in January (go figure) and the likelihood of finding a bed was slim. Amazingly, my doctor said there was another new medication available. You guys, there are NEW antibiotics for CF! This makes my CF heart so happy especially since I am allergic to so many!! It buys us all a bit of time when it comes to resistance and who doesn't want to buy a bit of time in this life? So if all goes well I will do a test dose at the infusion center to make sure I am not allergic and do home IVs. HOME IVS! No ICU!


And my cynical little self isn't holding my breath that all will work out until I am sitting in the infusion center with my test dose because things rarely go exactly as planned. And I am not 100% confident that this med will even work the way we want it to because this is my 4th month of trying to kick this infections, BUT the fact that there are even other options available makes me so happy.


Science is amazing!