Tomorrow morning Lucy will check into the hospital for her LAST round of inpatient chemotherapy! Wow, it feels so good to finally use the word LAST! It will be a bit premature it call this our last hospital stay ever, but according to Lucy’s road map of treatment, this will be the last time she is admitted for chemo. Nine months ago it felt like this day would never come. Although we anticipated, and for the most part, we feel joy and elation, it comes with a bit of trepidation. Could this be it? Could we be nearing the end of treatment … forever? I pray every day that it is, that cancer is gone forever from my sweet, smart, joyful, rambunctious daughter. Just a bit more to go baby girl!
The summer after Violet started walking I made a shocking discovery. Those adorable tiny little feet that I could barely keep myself from eating right up got very, very stinky! Despite being so cute, busy bare feet in shoes during summer get so smelly, how could this be?! We are thrilled to report that Lucy has officially achieved “smelly summer sandal feet”. She is so busy!
Since Lucy has been in the maintenance phase of her therapy, and cold and flu season is behind us, (and after discussing with the docs) we have been more comfortable taking Lucy out of the house, mainly outdoors in the fresh air. We have been to the zoo and parks, in the safety of her bubble stroller, and even managed to get out for a family photo shoot with Lucy’s personal photographer Chris Files. As usual, his pictures turned out amazing!
Lucy did great during a pretty long day at clinic today. She has gained weight! She got IVIG (a 2 hr+ infusion of antibodies) and her regular weekly chemo. I’m very glad that her counts have been decent through this phase of therapy because she wants out if her stroller and into the playroom as soon as we walk in the door. We still have to be extremely careful, but it’s nice to let her be a kid a little bit!
Steroid week is finally over! Sorry we didn’t post an update in the midst of it, but it would probably have looked like this: b,du(;&38.?>|^|!.!hdkdb. Lucy only slept for a few hours each of several nights in a row so Josh and I were a bit delirious. Thank God Violet has been blessed with the ability to sleep through anything; at least one of us was functioning. Soon she will discover that steroid week is the time to ask for a pony because Mom and Dad will probably give in to anything! Thankfully, at this age Lucy is not demanding anything outrageous; we let her suck on pretzels literally all day long, eat yogurt at 2:00 am, and watch Baby Einstein or YouTube clips of puppies on our iPads in the middle of the night. We gave Lucy her last dose of steroids Monday night. Although this video was not actually taken during steroid week, it quite accurately depicts what last week was like for us. And it is hilarious – if you need a good laugh, check it out here. Today, after a full day to get that wicked stuff out of her system and a great visit with Chiropractor Dr. K, we have our sweet little girl back! Lucy has been giggling and super happy and playful today. She is using her sign language to communicate again instead of pointing and growling/yelling what we can only guess means “more pretzels!”. Well at least it is over now, and it only lasted a week. One day at a time; this is a marathon, not a sprint!
Speaking of marathons, our dear friends Matt and Reena Powers completed the Wildflower half ironman triathlon last Saturday in Lucy’s honor as part of Team In Training with the LLS. They raised $6,750 for the fight to find the cure! The LLS is a huge organization making a significant difference in the prognosis of those diagnosed with blood cancers and we are so touched that our local chapter knows Lucy personally and cares about her and her fight.
Though this is a site for updates about Lucy, the rest of our lives inevitably seep into our updates, and I can’t help but share some excellent news, as I know many of you have been praying for this as well. Violet and Lucy’s Papa is beating cancer, again! A follow up scan a few months after his treatment ended shocked us all when it showed cancer again, but after three rounds of chemo, his latest scan looks good!! It certainly felt like the worst timing ever when my Dad and my daughter were diagnosed with cancer within a few months of each other (and for the rest of my family) but this latest result has reminded me to have hope and faith and to trust in Him and know that He has a plan.
Tomorrow is clinic day, and probably a long one. Lucy’s central line appears to be clogged, which is probably not a big deal, but will take some time to fix tomorrow before she can get her medicines. She will have labs drawn first to make sure she makes counts then pharmacy will make her chemo. She is due for her monthly antibiotic by IV as well, which has to run over two hours instead of one to prevent her from getting sick. If all goes as planned Lucy will start back on her oral chemo tomorrow. Time for Josh to get out his flashlight.
To all of Lucy’s nurses at Cardinal Glennon – on 4 North and the Bob Costas Center (and the ER, surgery …. Wow, we’ve been all over that hospital!) thank you for all you do! You have been our pillars of strength, a shoulder to cry on, a friend to laugh with, all this on top of your real work of caring for Lucy. Imitation is the sincerest form of flattery, and Violet is getting pretty good at doing an “assessment”! Although she claims to want to be a “doctor princess” when she grows up, we would be extremely proud if she AND Lucy become nurses when they grow up!
A huge thanks to Jean for watching both girls while Josh and I went to dinner to celebrate our 10 year anniversary. Lucy has only been away from both Josh and I a few times, ever, so she was not very happy! Another hurdle to overcome later – major separation anxiety. But really, who can blame her? We don’t really care; this registers last on our list of problems … unless you are the babysitter!
Lucy has been feeling good and eating well, but she still has her moments. She generally doesn’t sleep very well and when she is angry, boy does she let you know it! I must have blocked out my memory of the “frustration” toddler stage. Or more likely, I can’t believe my baby is there already! We are bracing ourselves for this upcoming week as the sleeplessness and mood swings get extreme during steroid week! Lucy will have an LP and chemo on Thursday as well as begin five days of steroids. Time to stock up on veggie straws (thank you to the Grocery Fairy Amanda we have finally found Lucy’s favorite snack!) and yogurt. Just feed the baby and back away slowly …