Wow what an amazing night at Lucy Feast! It was so uplifting to see so many friends and family come together for Lucy! Kandace and Bob – you two could conquer the world! I could go on and on to thank so many people, but I vow to do that in person, soon!! I must give a big thanks to Josh for hanging with the girls at the hospital while I went to the bar. Of course we know we can count on our always amazing nursing staff to help – this time she held Lucy’s steroids and vitals until I got back so josh didn’t have to deal with worked up hungry baby.
With so many people coming together for Lucy, and I’m sure lots of prayers in addition to beers and food, it is no mystery to me why Lucy SAILED through this round if chemo! Take that methotrexate! What took seven days to clear her system took just four this time around, and we are HOME today! (/hand off to Josh to finish the post…)
If you would have told me on August 26th, 2013 that Thanksgiving would be partially spent at Cardinal Glennon hospital waiting to see if Lucy had cleared her latest round of chemo before we could go home, the word “happy” would not have popped into my mind.
If you would have told me the same on August 28th, the word “happy” probably wouldn’t have done it justice.
Circumstances were pretty dire the day we found out about Lucy’s disease. On Day 1 it wasn’t just a matter of starting the long term treatment, it was a matter of whether she will live to see Day 2. We probably haven’t shared with many how critical the situation was on that day, but it’s probably best summarized by the fact that both Kenda and I weren’t to the point yet that we were praying for her to beat cancer, we were simply praying for the opportunity to fight it.
When we finally got to sit down with Dr. Bhatla to discuss her long term road map the next day,
it was a victory in and of itself because it meant Lucy had cleared the myriad of hurdles we watched line up in front of her just to get through the first 24 hours. Despite its best efforts, cancer wasn’t going to win this battle uncontested.
Three months later, Lucy is in remission and fully immersed in her year-long treatment plan. We know that it’s far from over, but making it this far was never a sure thing. Needless to say, it’s been a happy Thanksgiving.
Thank you for all the thoughts and prayers for Lucy – she is doing great! It is Tuesday morning as I write this and Lucy is more than halfway through her methotrexate infusion with no side effects! Our wonderful night nurse Susan checked on her every few hours through the night with a flashlight to make sure she wasn’t getting red. Thanks to IV Benedryl Lucy and I slept well. We are looking forward to 5:24 pm when this 24 hour infusion is over. Next we just wait for Lucy’s system to clear the chemotherapy. Last time it took 7 days so we came prepared to settle in for a while. Is nice and quiet on the floor this week, so take your time Lucy, just don’t get red!
The efforts to keep the toxicity at bay include around the clock Benedryl and a high dose of continuous fluids which makes for a sleepy, puffy girl!
Lucy and I had a long day at clinic yesterday. I got a phone call Wednesday evening from The Costas center to let me know that Lucy was scheduled for a GFR test the following day. Upon further inquiry I discovered that test will tell how well her kidneys are working, it had to be done at SLU hospital, and it would take four hours. I asked “just out of curiosity, why is this test not done at Cardinal Glennon?” The answer .. “Because we don’t have a Nuclear Lab”. Um, a what?! While this all seemed a little strange, at this point, I trust Dr. B enough to believe that it was safe and in Lucy’s best interest, so I packed some extra snacks for Lucy and I and off we went. It turned out to be our lucky day becuse the talented Chris Files kept us company and took these amazing pictures of Lucy. Who knew a “day in the life of” a seven month old could be so captivating? As with everything else, Lucy was a trooper. She had to get an additional IV for the dye injection to avoid any contamination of the blood that would be drawn from her Broviac every hour during testing. This was by far the worst part of the day, as I knew it would be. After two failed attempts, one in each tiny foot, success and a tiny vein was found in her hand. One of her nurses expressed my feelings exactly when she told Lucy “I would take the needle stick for you if I could!”
Next, a dressing change on her Broviac which Lucy also hates, but now she isable to wear her brand new vest – a central line protector. This is the first item not issued by the doctors or covered by insurance that the generous donations to the Lucy Fund has allowed us to buy and will make a huge difference in Lucy’s everyday life. She went from this – her lines dangling out, sharp clamps scraping her skin and irritating adhesive holding on bulky stat locks
To this – lines tucked away nice and neat from grabby hands and no equipment laying on or stuck directly to her skin. It is awesome!
We also confirmed that Lucy will check into the hospital on Monday for her next round of chemo. It was in her roadmap, but we had gotten so used to delays it kind if took us by surprise! It is her best friend/enemy high dose methotrexate again. If you have been following us for a while you will remember Lucy’s initial introduction to this chemo went very,very badly. The second round was stopped halfway through the scheduled infusion because Lucy started to show signs of the same wicked reaction. The extra rescue efforts paid off and she came through with her skin intact, so the plan has been tweaked, and we are expecting that.this round will go smoothly. Praying for no mouth sores or skin reaction this time! Thank you for your prayers for our Lucy!
As Kenda mentioned earlier this week, we have the Lucy Feast scheduled for November 27, but we also want to make sure to let everyone know about another event planned by our friends to benefit Lucy.
This one was organized by my friend Ben Brown through his charity Keystone of St. Louis and will take place the day after Thanksgiving at Over/Under downtown.
Below are the details straight from Ben:
To help the Bacott’s and Lucy through this difficult time, Keystone is holding its annual Night After Thanksgiving Event at the Over/Under on Washington Friday Nov 29th 7-11p.
Your ticket will include unlimited beer, wine and heavy appetizers. A portion of your entrance fee ($28 in advance online, $35 at door) will benefit the Bacott Family’s I Love Lucy Donation Fun as well as our annual Thanksgiving beneficiary Operation Food Search of St. Louis.
The evening will include a 50/50 Draw, Raffle Prizes, Silent Auction for great Sports Memorabilia, LIVE Music (acoustic guitar duo) and more. Tickets can be purchased at:
Considering that this is yet another example of the tremendous support that we’ve seen from our friends and family since Lucy was diagnosed, I think we’ll have a lot to be thankful for come next Thursday.
As we near Thanksgiving it is perfect timing for us to encourage our youngest family member not only to binge eat but to indulge in the highest calorie, highest fat foods possible. While most kids over eat while on steroids Lucy weighed in a little light yesterday at clinic. Perhaps the lack of (refusal!) sleep and consequently “party time” at night (as her nurses called it!) is burning away all her calories. Darn steroids! One more week to go. And it also seems that the food is running right through, her onto everything, literally. But that’s another story! Okay just one little story.The biggest poo blowout award belongs to the one that required a change not only of clothes but also a complete change of tubing on lucy’s Broviac line. Gross!
It was a big day at clinic for Lucy yesterday. She had an LP with triple intrathecal chemotherapy and vincristine chemo as well. Actually, given the scheduled events, it was a shorter day than mom and Lucy had anticipated. When we left the clinic on Thursday we got a call shortly after regarding her labs, and “not to panic” but Lucy’s ANC was 20. If this number is under 1000 that means Lucy’s immune system is very weak, anything under 500 means an automatic trip to the hospital for fever or other signs of infection, so being at 20 put her on the low-end of low. Dr. B was nervous to let us go home over the weekend and so were we! But Lucy did fine, even a little less fussy overall. So we were warned to plan for a very long day on Monday as Lucy would probably need transfusions with her numbers dropping so low. But surprise, Lucy the responder strikes again! Her ANC yesterday at clinic was 20,000! This means no more night infusions of neupogen, hooray!
The only troubling number was Lucy’s weight. She had lost a few ounces from her last visit and still has not reached her initial weight on day one of her admittance and diagnosis. This is so frustrating to us as Lucy seems to eat pretty well. She has escaped much of the vomiting that typically accompanies chemotherapy, and she is nursing often and even eating table food pretty well. We just can’t get her to pack on the pounds, or ounces and her case. It’s also hard to see that she’s not gaining weight because she was so healthy and chunky to begin with, in the 90th percentiles for her age (thanks for that one God!), which means she is still not underweight for her age now. However, at a time when she should be growing rapidly Lucy has not gained any weight in two and a half months. We will continue to feed her as much as possible but could use some prayers for her little body to put the weight on. We think the hurdle this past weekend could’ve been the three new teeth that broke through Lucy’s poor gums; it might’ve caused a bit of diarrhea and general fussiness. We expect a lot from you new teeth, let’s get to eating!
Going into the second round of her induction regimen, we assumed that we knew a few things about how these drugs can dramatically affect Lucy’s blood counts. Even with that knowledge it’s still mind blowing how quickly the numbers can go up and down.
Kenda normally makes two scheduled visits to the Costas Center per week to do a blood count and for whatever treatments she has scheduled in her road map. Last week, we saw Lucy’s ANC go from 3,000 to 20, which was explained to us as a common delayed reaction from her chemo schedule during her last stay at the hospital. An ANC count of 20 is about as low as your immune system can go without bottoming out. It wasn’t alarming, but still a bit surprising how much it had tumbled.
Fast forward to Monday when Lucy went in again for her lumbar puncture/triple chemo dose and the blood work showed that her ANC was up to 20,000, which I believe is the highest its been since we started. We will no doubt see the number come crashing down again as she continues to take on new chemo treatments, but it is still positive to see such an aggressive recovery (aided by her nightly dose of neupogen)
Lucy has also shown signs of leveling off with her steroid side effects. Sleep is still at a premium, but the last few days she has been much happier, more smiling and less fussing. She’s still got a monstrous appetite, but that’s also led to some pretty substantial leaps with her progress eating solid foods. Her favorite non-breast milk meal at this point is anything that we mix with Tahini. I know, I had no clue what Tahini was either (neither did the dietician at the hospital), but Kenda explained that its basically just the liquified version of toasted sesame seeds. High in calories which are much needed for her and, frankly, it smells much more appetizing than the other veggie pastes that she’s sampling.
Of course with solid food comes another side effect – we’ll just say that her diapers and clothing are suffering the brunt of that one.
All is well at the Bacott house with Lucy and mom still home. Lucy is still kind of fussy and uncomfortable from the steroids and possibly the neupogen which can cause bone pain, but being at home instead of in the hospital this time around makes us all feel a little better. Especially mom, because dad is now the sleep whisperer in the house. Lucy has found her favorite sleep spot which is on dad’s chest, so he graciously spends several hours a night snuggling our girl. I have no idea how he sleeps that way but I thank God we are all together at home through this part! We are counting the days – 11 more before we begin a 7 day wean from the steroids.
We went to clinic today for counts and Lucy’s social hour. Since it is the only time she can leave the house I think we both look forward to it! We got some great news – it’s official that Lucy is in REMISSION! I think it was expected that the leukemia cells would be gone, but the other very significant factor is healthy bone marrow, which Lucy has! The chemo will continue to knock down her counts but the fact that her counts have been recovering means her marrow is making healthy cells and this is huge!! I will be honest, we were told the outlook was grim in the beginning but Dr. B told us to CELEBRATE this weekend (if she doesn’t get a fever)! Well, we already know that Lucy is the Responder, but nice to be able to see science backing it up Still lots of treatment ahead, but we will celebrate this day!
Speaking of celebrating, I want to brag about a few of the MANY friends who have planned something special in Lucy’s honor. Lucy Feast is in two weeks on wednesday, November 27 at Perennial Artisan Ales in St. Louis. The website for VIP or free tickets is www.lucyfeast.eventbrite.com. You can read about it in Feast Magazine here and you can hear my friend Bob talk about it on Fox 2 News here My good friends Kandace Davis and Bob Komanetsky have coordinated an amazing night of awesome food and beer for the benefit of Lucy. These are people who when they hear someone shout “fire!” will run toward the sounds instead of saving themselves! Which is what they did from the beginning. The first days of Lucy’s diagnosis are a blur, but Bob, Kandace, Lisa and Sam were among the first visitors when Lucy was in the PICU … I should have expected them to go above and beyond in organizing something like this! Feel free to post questions about the event here and I’ll ask Kandace or Bob to respond. I know from experience the food and beer are awesome!
I must confess, Lucy may have gotten a head start getting to Bob and Kandace with her cuteness. Here she is about 6 weeks old when I brought her to the kitchen the first time (Violet spent her first year here, in the kitchen with me).
Lucy and Kandace, fierce warriors before their battles began. Just days before Kandance began her fight with breast cancer (and months before Lucy’s diagnosis). A great look back to when they had hair – both are now beautifully bald!
Lucy and Bob, who was already bald. Haha!
It’s no secret that almost every baby will lose most of their hair at some point. Violet was born with a full head of dark hair and, about six months in, looked like a 50-year old Hans Weiman patient. But even knowing that still didn’t make it any less significant when we finally broke out the eyebrow trimmer and buzzed the sparse remnants of Lucy’s hair this weekend.
You can see in the photo gallery how robust Lucy’s hair supply was through her first few months so, while it has taken a while, any recent picture will confirm that chemo has officially won that battle.
It’s not a major difference, but we’ve been dealing with cancer on a daily basis since August, and now there is visual confirmation of it every time we see her bald head. People at the hospital have told us repeatedly that when it grows back it has a tendency to be much different than it was when she lost it. I’m all for it coming back curly and blonde or fire engine red, whatever the case it will be beautiful I’m sure.
If ever there was a doubt on which drug has the most notable effect on Lucy’s daily mood, the steroid Prednasone has run away with that title. She’s on it for the second time and there are very obvious side effects that she experiences – ferocious appetite, frequent gas, and just general discomfort being the most significant, all of which are very common. She struggles sleeping at night, partially because she’s waking up like clockwork every two hours to eat, but also because she appears uncomfortable laying down, given the gas issues. So mom is putting in endless hours as the food source and I’m spending a few hours sleeping upright in a chair so Lucy can do the same on my chest.
The part that makes it a little easier to handle is that we know it’s the steroids that are causing it, and they’re only temporary. We have another two weeks to go and she’ll start weaning off of them and hopefully things will go back to our new normal.
She is headed to the clinic this morning with mom to get a dose of the chemo Vincristine (I have no idea how to spell it) and then it’s back home. Her bloodwork yesterday showed that her counts are in great shape and all signs are still pointing towards her being in remission according to her doctors. So while it might be inconvenient to go through these little spells where the effects of the drugs rear their heads, they appear to be doing their jobs, so we’ll cut them a little slack.
Great news – we are HOME! This trip home is a very big deal because as Dr. B put it, we have “achieved outpatient”! Every other time home has been during a break from chemo, but this time Lucy is still in the middle of a phase of treatment so we will go to clinic for chemo and continue steroids and neupogen at home. This is the beginning of week nine of the intense 18 weeks of initial treatment, so still a long way to go. However, we expected to be in the hospital for all 18 weeks so we are extra glad to be home. There will still be lots of inpatient trips for chemo ahead and unexpected trips too – a fever means a hospital stay.
It’s very scary bringing home a baby who is so vulnerable to infection (without daily labs at the the hospital we don’t know exactly what her white blood cell count is but I’m guessing it is very close to zero right now), and we have a lot of responsibility medically to care for Lucy, but it is so worth it to call Odell street HOME. Sure, we will have to be hermits for a while, and I’m considering a decontamination vestibule at our front door for the rest of cold and flu season, but it’s pretty amazing to see these two sisters relaxing in their pjs or sitting at the dining room table together. So bear with us friends, we have made a tiny step closer to our old lives but we are still reconciling our new “normal”, which includes germ paranoia, for now.
In a show of confidence that our consecutive weeks of stay at the hospital are over for good I have finally settled on a nursery theme for Lucy’s room – get well soon! I think the cards and pictures look perfect in Lucy’s room, and we read each and every card, often!
After a few days of heavy chemo, Lucy is in the home stretch of this latest round. According to my count, she has received about 94 different types of chemo since Monday (I could be off by a smidge). But if anyone expected that it would run her down or make her tired and cranky, it’s actually been quite the opposite. This girl is overflowing with energy, much to the detriment of her mother’s sleep schedule.
Mom got to log about four hours of sleep last night, not helped by the midnight dose of Cytoxin that Lucy received. And Lucy is getting to the phase that every kid hits where it is downright dangerous to leaver her unattended for more than about 10 seconds. She still hasn’t officially started crawling, but she’s making serious progress in her efforts to climb out of her crib. Yesterday she was bouncing so hard in her jumper that she dragged it across the floor of her room. Imagine all of this going on while being connected to a bundle of wires so cluttered that it looks like she rolled around in a bowl of spaghetti.
It’s all hands on deck when she’s awake and rambunctious. Earlier this week we got a sneak peak at what happens when we take our eyes off of her for a minute as she leaned forward with a bit too much momentum and face planted in her bed. Don’t worry, Lucy, it happens to the best of us.
We are still waiting on full report from her bone marrow test. Dr. B said her initial signs were very positive, but we’re holding off on any formal confirmation until she gets the full results which could take a few more days. Fingers are crossed that we can break out the “R” word if there are no signs of leukemia.
She is set for her final round of Cytoxin tonight and they are proactively going to refuel her with blood transfusion tomorrow and after that we’re likely headed home. For how long, we don’t know. There will be some added items to our task list at home, including three doses of steroids each day for a few weeks, but hopefully things go as smooth as they did last time she was home.