We are now officially done with all of the hard chemo in Maddie’s protocol, so we are cautiously waiting for her counts to recover. We hope to avoid a fever and any unplanned hospitalizations. It feels great to say that we can finally put the hard stuff behind us, but it is also a little scary as we know the hard stuff killed her leukemia. Taking it away means that we now get to find out if her leukemia is so aggressive that it will come back in the absence of the intense chemotherapy. Please pray that our little princess remains cancer free forever!
In an effort to be optimistic (that we won’t be back in the hospital), I want to thank all of the people who have been so supportive of us over the last year (it has been almost a year!). Without the support of family and friends, we could not have gotten here (with a little sanity still intact). I especially want to thank the staff at Levine Children’s Hospital. We had some exciting times in the hospital, and I know I (Liz) was not always easy to get along with. The nurses were true professionals who did such a great job to take care of our little girl, even with me trying to interfere at every step. I want to thank one nurse in particular, our night nurse Elisia. The night of Maddie’s diagnosis, she was our nurse, and I remember bothering her multiple times that night because I swore up and down that the IV fluid was making Maddie unable to sleep well. Of course, it might just have been the leukemia that was making her uncomfortable and unable to settle down, or the fact that we were confined to a hospital room, she had an IV, or any of the other major changes we were trying to adjust to. But I was blaming the IV fluid, and poor Elisia was nice enough never to say, “You are completely insane!” I think she had dealt with other crazy parents the day of their child’s diagnosis and knew not to be offended by it. But the important part is that despite knowing how crazy and hard to get along with I could be, she continued to take us on as patients when we were in the hospital. She even visited Maddie to say hello on nights when she was working on another unit. In perfect Elisia style, when she was our nurse last week, she came in and drew Maddie’s blood from her line in the morning without even waking us up (which is not easy considering she and I sleep together in a little hospital bed). So we did not get to say thanks then, since we just snored away through (hopefully) our last encounter with her. It is amazing how much little things like sneaking in and out of the room make a difference when trying to get through another night in the hospital.
We really appreciate all of the people who gave us such great care in the hopsital at Levine. If Maddie’s counts are good enough, we hope to visit and bring some holiday treats around Christmas to all the special people on the 11th floor. We will be thrilled not to have to be inpatient during the holidays this year. You would not believe all the gifts Santa brought Miss Maddie in our room while we slept last Christmas Eve, but we still would prefer to be at home in our own bed this year. Levine’s Child Life really does a good job of trying to make the kids in the hospital over Christmas feel special, and that was an unexpected treat.
I also wanted to let y’all know that we were able to travel to my grandmother’s funeral this weekend, and though it was a long trip for a baby fresh out of the hospital, Maddie really did well. We were so happy to be able to be there to honor my grandmother, who was truly a very special lady. I will always admire her for her strength, her intelligence, and her intense love for her family. The number of people travelling to the little bitty town of Weldon, NC to be at her funeral was truly a testament to how loved my grandmother was. Maddie is her first and only great-grandchild. Once Maddie’s counts are better, we hope to have a longer visit with my Aunt Nita. It was so nice to get to see lots of family and friends at the funeral, since we do not get out a whole lot. Thanks so much to my Aunt Pam and Uncle Clyde for sharing their lake place with us!
One last thing: We are still preparing for the MileStones Walk to raise money for CureSearch on November 15th in Charlotte. I am going to be sending out an email about it soon, and I would love it if you would pass it on to others who you think might be interested. This is the first year they have had the walk in Charlotte, so it is slow getting the word out, but it is a very worthy cause. We will have a gathering as a team for lunch after the walk in Freedom Park. I will be asking for people’s t-shirt orders next week, but I am waiting on the final cost figures. I want to say a big thank you to all who have donated already and especially those who have joined the team and are recruiting other donors. This really means so much to us! I want to say a special thanks to Brandon’s conference group at the Expeditionary Warfare School in Quantico. They gave us a very generous gift to go to our fundraising efforts. We are now almost 2/3 of the way to our goal of raising $5000 for CureSearch. To donate or join our team, click here. To donate, look for the tab that says Support Elizabeth! and to Join the team, click the tab that says Join Elizabeth’s Team! (I know, who the heck is Elizabeth? It made me enter my full name so I could enter my Credit Card info) Anyway, we look forward to seeing everyone out there. Hopefully the weather will be just as nice a month from now!
Thanks again to everyone who has supported us along this journey!
Love to you all,
Liz, Brandon, and Maddie