We’ve heard from several people over the past month that, when an update isn’t posted on Lucy on a given day, it’s natural to assume that it means it was a tough day. It comes with the territory when dealing with something as malicious as cancer. As parents, we’re not immune to making the same assumptions, as I know that when I don’t get a text or a call from Kenda in the morning, I teeter towards freaking out that something is amiss.
But in Lucy’s case, it’s also just as likely that the opposite is true. Part of the reason that we haven’t posted quite as much over the last few days is that, with her recovery from the most recent treatment progressing as the doctor’s had hoped, we were granted a three day vacation at home. Since Friday afternoon, Lucy has been back at her old stomping grounds in South City and, for the first time in over a month, her and mom got to sleep in their beds.
The doctor’s had talked about the possibility before the Methotrexate treatment started last week, but we did our best to keep from getting our hopes up too much in case it fell through. When she officially cleared the Methotrexate on Thursday, they confirmed that we were headed home and we began packing up our pseudo-hotel room.
As sweet as it is to have the entire family at home together – and it is sweet – it wasn’t without challenges. Kenda and I were sent home with a massive box of medical supplies and a crash course in procedures such as flushing Lucy’s IV lines that needed to be done every 8 hours, Dr. Sinai was the weekend on-call oncologist and fielded a handful of calls from us asking questions about various things we noticed, Lucy was subjected to having her temperature taken an estimated 342 times in a three day span and we were left scrambling to find a suitable replacement for the trusted Rally Wagon that has become her best friend whenever she’s not feeling well (one of our strollers stepped up nicely)
But all of that not withstanding, it was certainly a welcome relief from the chaotic shuffling between home and the hospital that has been the norm for the past four weeks – and will continue to be the norm for many more. A weekend at home certainly makes it easy to take a few moments to appreciate that it’s not always guaranteed.
Lucy cleared the methotrexate from her system, hooray!! Her levels were down below the threshold Friday morning, so later that afternoon she got her catheter out and fluids unhooked. They have been gradually turning the fluids up over the past few days which made her pretty swollen so it was a relief to get her off them. It may be just water weight but her chubby little cheeks and thighs sure are cute!
We also said goodbye to Dr. Su who has been caring for Lucy since she was admitted. She is moving on to another service for her residency. She always encouraged us to ask her any questions we had, anytime. She also genuinely shared our excitement with each hurdle that Lucy met and totally dominated. We will really miss Dr. Su!
For now Lucy gets another little break until chemo again on Tuesday. We are still keeping an eye out for mouth sores (boo!!!) that could still occur from this latest round if chemo. She will repeat the same process on Tuesday so we hope things stay uneventful this time and next time!
Just catching up on the latest celeb gossip
We are happy to report that so far, Lucy has sailed through this round of chemo with smiles and good spirits! The 24 hour infusion of what looked like Gatorade (except for the bright chemotherapy caution sticker on the bag) didn’t seem to phase our little responder. The catheter had some functionality issues, like the drain tube coming loose a few times … spilling on mom! The doctor assured me the chemo pee wouldn’t eat through my shirt and skin! Although it limits her mobility a bit, the catheter was a good idea. It’s intention is to minimize breakdown on her bottom since this chemo goes straight through the kidneys, exiting via her urine. We can’t have her sitting in wet diapers! Despite this intervention her bottom is staring to get sore. We are trying to stay ahead if it and praying that it will not turn into the painful open wounds she experienced before.
Right on par with Violet’s obsession with doctors, dentists and anyone with a stethoscope is her love of books. Jennie gave her a great book called Chemo to the Rescue. Actually, it is informative to all of us! Even though it is a bit advanced for a three year old, explaining the biology of blood and cancer, Violet LOVES this book! It has helped us keep in mind that while the side effects are unpleasant, chemo is helping our girl! And so far Lucy has had no nausea or vomiting. The mouth sores could still occur, though, since they usually pop up five or six days after treatment. Praying this doesn’t happen!
For the next day we hydrate and wait for the chemo to leave her system. The faster the better!
“Who’s getting chemo right now, me? Oh, didn’t notice.”
It was a pretty uneventful day at Cardinal Glennon Suite 4207. For the first time in the last week, Lucy was a bit unhappy, but after careful evaluation from Mom and Dad, we diagnosed her with a case of boredom.
We think she’s just sick of being stuck in the same room. She got another brief respite when we smuggled her to the playground for the second day in a row. Unfortunately, being six months old means you can’t enjoy the merry-go-round quite as much as the older kids.
As Kenda mentioned yesterday, tomorrow starts a big stretch of treatment for Lucy. She is set to received a triple dose of chemo that will take up to 72 hours to leave her system. The doctors have a pretty intricate combination of drugs aimed to combat any of the negative side effects that kids tend to experience from the chemo, so fingers crossed.
We realize we’ve probably been spoiled the past week with how strong and upbeat Lucy has been, but we’re hopeful that her body is able to handle this dose better than she did when the steroids started beating her up two weeks ago. We’ll take the happy medium, please.
A few things to mention:
For those of you who didn’t see it, we’d highly recommend reading the story from the Post-Dispatch about Cardinals player Jason Motte and his mission to help kids with cancer –
A big shout out to Kenda’s cousin Katie Korando who walked in the KC Light Up the Night walk for Lucy this past weekend. The event benefits the Leukemia & Lymphoma Society. And to Aunt Suzie and Mallory who will walk for her in Lawrence this weekend.
And a big thank you to all who have continued to donate money in support of Lucy, including a large donation from the Cassidy Turley/ Edward Jones team that held a fundraiser this week in her honor.
Send out your prayers for Lucy to breeze through this round of chemo tomorrow…
It was a fun weekend in Lucy Bacott’s room at Cardinal Glennon. Lucy is like her happy old self, allowing us lots if time for visitors! A special last minute guest from KC was one of our angels, Jennie. Many of you know her, but for those who don’t, we have been best friends literally our whole lives, and as fate would have it, she has been an oncology nurse at Children’s Mercy in KC for well over 10 years. As horrible as this situation is, it is also amazing how we have been blessed with what and who we need. It felt like we were in grade school again as I nervously asked our nurse if Jennie could spend the night in Lucy’s room … she said yes!! It wasn’t at all like when we were kids (no truth or dare) but it was so nice to have company.
Lucy has “officially” been off fluids for several days now since she has been nursing so well, however her long list of IV medications left little room to roam. Our nurses have done everything they can to unhook her from the line but we were only getting a window of a few hours between medications. Luckily, her doctors have been dropping medications as she continues to do well! She is off all antibiotics (which accounted for a total IV time of about 10 hours a day, I think!) and is weaning off the steroids as planned. I haven’t requested Zofran for nausea in several days … So we got a whole day of Lucy unplugged!! The BEST part of the day – we took her outside!! For the first time in four weeks she got to breath fresh air and feel sunlight on her skin. Jennie had her camera along and treated us to an impromptu family photo shoot.
The docs (and we) were comfortable letting her outside because her counts are way up. Although we felt a little like we were smuggling her out because we had to cover her face with a blanket in the elevator and through the hospital until we got to the playground. That ANC number that we have been waiting for to hit 500 soared to 3,000 yesterday!! She was staying on neupogen, the drug to stimulate this good growth, until her ANC hit 1000, so needless to say she had her last dose a few nights ago. There is a 48 hour waiting period before chemo can begin, which puts her next round to begin tomorrow. So this rally of recovery is bittersweet, especially given the name “high dose” methotrexate, or as her doctor called it – “wicked high” she faces tomorrow. This particular chemo is obviously quite toxic, so the goal is to get it in then flush it out of her system as fast as possible. She will get lots if fluids and they have decided to put in a Foley catheter to prevent bottom breakdown, which would be likely due to the toxicity of this chemo. Mouth sores are the other nasty side effect that we really, really, hope to avoid! Despite nursing very well and eating cereal now, she still has not put on weight and is barely holding it steady. we can’t afford a mouth sores set back. Some good news – this chemo apparently isn’t likely to cause nausea or vomitting. She also scheduled to get TIT, which is the triple chemo in the spine.
So it turns out tomorrow is chemo day across the state, as Lucy “The Responder” resumes her battle on the east side and her grandpa, “Papa” stars chemo again as well on the west side in KC. Say goodbye cancer!
Lucy eating! It’s a messy process, but we are working on it!
One of Violet’s favorite places – the playroom on 4 north.
The Girls. We could not get Lucy to look at the camera – all she wanted to do was look at her sister. The feeling was mutual, as you can see Violet tickling her sister’s toes.
A nice quiet family evening together at “home” on 4 North. Lucy is enjoying tummy time on the new mat from PT. She was already rolling over and scooting around before her diagnosis almost 4 weeks ago, and we are thrilled to find she has not lost the skills!
We are still riding high from Lucy’s latest test results, but even better – Lucy is feeling great! She is the old happy, energetic Lucy! It is such a thrill to go days without hearing her cry! We are granted this break in treatment due to “count recovery”. Lucy’s bloodwork has to reach certain levels in order to get the next round of chemo … to knock it down again! The big number we watch is her ANC, which needs to be above 500. It literally hit zero today, so no where to go but up! Her diaper rash also needs to clear up to get this next type of chemo, and the fact that it is improving tells the doctors that her marrow is beginning to make healthy white cells. Yea!! Treatment will start sometime next week, we just wait and watch right now.
She has also gotten her appetite back, just in time. We are all concerned about her weight loss, her medical team “officially” now. While the dietician has some interesting ideas to increase her calories … I’m nursing as much as she wants and we are trying to get her to eat from a spoon. It is not a skill that comes naturally to a baby her age, but we won’t give up! The speech therapist suggested letting her play with the cereal, and we had a breakthrough! She grabbed the spoon and shoveled it in herself! Well, some of it in, a lot of it everywhere else. That’s the kind of spirit we like to see – Lucy taking charge and kicking leukemia’s ass!! Eat Lucy eat!!
Yesterday the whole family got swabbed for bone marrow donation testing. Lucy, mom and dad were tested just for genetics. Unfortunately mom and dad would not be potential donors. Siblings are the golden ticket. It is impossible to really explain to a three year old what this simple swipe of the check with a q tip means, and terrifying as parents to begin to imagine that both our girls may be in the hospital … so we don’t. This is just a formality at this point, and here is the prayer request – we pray that Lucy responds so well to chemo that she doesn’t need a bone marrow transplant!! And I already know the next question. If Violet doesn’t match, then it will go to the national registry; other family members or friends can not donate directly.
Physical therapy dropped off a floor mat for Lucy to roll and play on. We can’t wait to set her loose! As you can see, she is trying to make a break for it here!
Its around lunch time on Wednesday afternoon when Mom and Aunt Lezlie are just hanging out in the room next to a serene and cheerful Lucy. There is a knock at the door, one of many that come throughout the day. Only this time it isn’t a nurse delivering diapers or food service dropping off a veggie burger to Mom. No, it’s just a non-descript guy and his wife checking in on a kid they’ve never seen before, holding a mini Louisville Slugger for reasons unbeknownst to Mom, Lezlie or Lucy. They had no idea who he was or what he was there for.
It just so happened to be the first time that Lucy has ever received a visit from the guy who caught the final out in the 2011 World Series, the guy who swooped in and took over at first base when Albert headed west. Just your average hump day visit from Allen Craig.
As we’ve heard that many Cardinals players do, Craig stopped in to Cardinal Glennon to cheer up a few kids, snap some photos and give everyone a story to tell the people reading their website. The Cardinals tweeted out the picture of Craig holding Lucy to their 300,000 followers and posted it on their Facebook page and all the while, the only person of the group that would have known who he was when he walked into the room happened to be in the car driving to the hospital from work.
Oh we’ll, we scored a sweet autographed bat out of the visit.
While Allen Craig’s visit was a pleasant surprise, it wasn’t the best one of the day. That honor went to a phone call I received from one of Lucy’s doctors around 2:00. When Lucy had her bone marrow test performed last Thursday, we knew it would take a few anxious days to get the results. What we were told to look for was a decline in the numbers reported from each of two tests. After her initial tests, taken 8 days into the treatment, the ‘flow’ test had shown .07 as the portion of leukemia cells present. The cytogenetic test measured the presence of mutated chromosomes and was at 80% after last week.
With Kenda on her way to pick up Violet and Lucy napping a few feet away, Dr. Sinai informed me that the most recent flow test showed no traces of leukemia cells and the cytogenetic test ( the one that had us worried initially) measured 1%, a huge drop from the initial results. Even after we both received a hand drawn explanation of the tests last week, neither Kenda or I can claim to be an expert on what the numbers mean, but we know one important thing – the results were very good.
Now we’re waiting to see a spike in her ANC count. Once it reaches 500, they believe they have enough growth of healthy cells to begin the next round of chemo. Yes, I know it’s bizarre to be rooting for the next round of chemo to be mainlined into your daughters bloodstream, but that’s where we are now. We want the positive progress to continue.
Maybe if we hit that number over the next few days, Yadier Molina will pop in to say hi. At least Kenda will recognize him.
Since this all started three weeks ago (seriously? It’s been three weeks already?), one of the many themes that we’ve hopefully been able to express is the sincere gratitude for all the support we’ve received. Whether it be a short e-mail, a card, a stuffed animal for Violet, a donation to Lucy, whatever it has been, it has all helped keep us in a positive frame of mind.
Today we want to give a special thanks to the Brooks family and the Kreuzer family (and anyone else that was involved) for organizing a formal (but also informal) gathering to support Lucy on October 6. It’s called Love and Loot for Lucy and we’ll let the flyer they created do the heavy lifting when it comes to outlining the details (click here for the larger version)…
The walls of 4 North at Cardinal Glennon (whose hallways we pace endlessly when Lucy is feeling bad) are adorned with beautiful artwork penned by children with cancer. The one that has always stood out to me is a picture that simply reads “hospital sweet hospital”. Today marks three weeks since I took Lucy to the ER in the middle of the night, three weeks since the four of us have slept under the same roof, and suddenly that piece of artwork hits home and means something personal to us.
Looking at our “roadmap” of chemo for Lucy we knew that it was intense, without even really needing to understand the details. Our doctor also warned us to expect to spend a lot of time in the hospital this year. We have been taking it all day by day, and we knew that we could expect Lucy to spend these first four weeks in the hospital for sure, but finally we got the straight answer on the upcoming weeks. More realistically, we should expect that Lucy (and Kenda, who holds her meals!) to be in the hospital for 18 weeks. Yikes. Our doctor gave us this fair response, which we truly appreciate, so that we don’t get our hopes up: There will be days (just days) when we can go home, but take them as a “bonus” and not a guarantee. Yeah, this totally sucks, but still we are so lucky in many ways (hence our top 10 list posted yesterday). Immediately I thought of so many military families who deal with a parent gone for months, and the many, many patients here who live hours away. We are so lucky to live a few minutes away – we get to be together every day! Violet comes to the hospital after school and we try to always eat dinner together. Our proximity to the hospital will also factor into the doctors letting us go home, so we have an advantage that many patients here don’t.
The middle of this week technically ends the “induction” phase of Lucy’s battle. It turns out we don’t get the break we anticipated but instead go straight into the next phase, and chemo on Friday. So we honestly have no idea when Lucy will come home, or for how long, but until then, 4 North is our home away from home… Hospital Sweet Hospital!