Lucy was well enough to go forward with her day of chemo yesterday. The new cocktail of meds for her procedure required bit larger dose to keep her still. Then one made her itchy so she got some IV Benadryl. And down goes Lucy. Our little responder can’t quite get herself out of this fog.
The blood cultures from the other day came back negative which is good news. And after adding up the symptoms of runny nose, mild fever, and the latest, diarrhea, I can’t believe I overlooked the simplest explanation; Lucy is teething again! Some big teeth are coming in this time. Add this to steroid week and we have a very cranky Lucy. Steroid week is never fun so perhaps getting teething week over with at the same time is actually a blessing. The one bit of goodness that comes out of steroid week is that Lucy’s appetite returns and I had hoped she could pack on some ounces. However, with teething in the way she doesn’t feel like eating much. We hope to be able to manage her pain enough to make her comfortable and get her eating.
The good news is Lucy was able to stay on schedule with her chemotherapy this week and hopefully it will continue for the next month because as we near the end of March we are looking forward to Lucy’s first birthday! If she can stay on schedule with no delays she will be in a great spot to celebrate the big ONE because it falls on a very rare “rest” week from chemo.
Lucy and I made an unscheduled visit to the Costas Center today. Monday evening Lucy started to run a low grade fever, lasting all night. Technically, it wasn’t a “fever” since her temp never quite reached 100 degrees, but it was persistent. She also vomited a few times over night, between the few hours of sleep she managed to get. It was pretty clearly mucus, probably from drainage, because luckily she didn’t seem to be nauseous. None of this was cause for a middle of the night ER trip, but I was concerned enough to ask for her to be seen by the oncologists at clinic in the morning.
Dr. F ruled out ear infection and said her lungs sounded clear. Her temp was 99.2 when we arrived so he agreed that something might be brewing. Her counts were good on Thursday so I didn’t suspect that chemo had made her neutropenic, but Dr. F ordered labs and blood cultures to check things out. Meanwhile Lucy was smiling and playing, looking like normal. I asked “do you think I’m being paranoid?” He said “In a baby with a central line and leukemia? NO!” Her counts came back and her white blood cell count had crept up a bit. Still well within normal, but for a baby on chemo this likely a sign that her body is fighting something. The ongoing runny nose leaves us all hoping it is a virus and NOT another bacterial infection. The blood cultures will take 24 hours for results, and we are hoping and praying for negative! Her counts are all good so we will continue chemo at home tomorrow.
This Thursday Lucy is scheduled for an LP with chemo, vincristine, and the beginning of the dreaded steroid week. The last few time Lucy did not react well to the sedation for the LP, so this time medications will be tweaked; luckily there are other options. In fact, Thursday is a mystery day altogether, because if she is not well she won’t be able to have the procedure. Dr. F explained that if she is still snotty and congested they would not want to sedate her, because of breathing risk. It’s not clear how this would affect the rest of the schedule – vincristine and steroids. More wait and see!
We are praying for Lucy to be able to get some sleep tonight, and for less snot! And as always, a happy Lucy.
It was a long but productive day at clinic on Thursday. We were there from 8:30 to 5:00 and Lucy was getting IV medications pretty much the whole time. One if them is an antibody to boost her immune system, and we hope this will help with her runny nose. So far, no other signs of illness accompany the snot faucet so Dr. B is hopeful that it could be just some irritation from the environment/changing weather. Next was her monthly antibiotic. Last month she threw up during the infusion, which I was sure was a fluke because she was inpatient at the time … but after a repeat occurrence during this infusion I think we can safely say she has a “sensitivity” to this medication. The ironic part is, she gets this monthly infusion in leu of an oral weekly dose because it made her throw up! Last but not least, Lucy got her chemo which was uneventful. We visited with some friends while we were there and got a special visit from a friend who was up on the floor getting her LAST round of chemo. So exciting! It always helps to pass the time to catch up with our friends.
We have been continuing to enjoy our time at home. We finally got to take the heavy duty jogging/bike trailer stroller with real bicycle tires outside today. It seems so silly that we have only used it indoors! We took advantage of the brief perfect weather and went on a walk to the park. Violet rode her tricycle. Looking forward to lots more of this when spring finally gets here!
During this less intense chemo regimen Lucy’s hair has been attempting a comeback. Her eyelashes have been growing back for a few weeks now, and in the last few days eyebrows have followed. And the most amazing growth is a very fine, light layer of hair on her head. It feels exactly like peach fuzz. It’s not going to last this time because she has another big round of chemo in a few weeks, but we still love rubbing her fuzzy head!
Although the spider scare was a very unpleasant experience overall, one positive that came from it was that it prompted some major de-cluttering at our house. Lucy and I are going on three weeks of being home, the longest stretch in almost 6 months; its starting to feel like we live here again! So much has changed since this all began. When Lucy was diagnosed, she was just rolling over – now she is crawling and almost walking! And Violet has gone from a two year old who gets into everything to a three year old who … gets into everything! But now she can “officially” play with all those “choking hazard” toys. Big step. After days of cleaning and organizing I finally declared the now re-located playroom to be safe and clean enough for Lucy to explore – under strict supervision. Violet is such a kind, patient big sister. She let Lucy have a turn playing with her coveted Doc McStuffins check up clinic. Obviously, Lucy was thrilled!
We are finishing the second week of daily chemo and Lucy is still doing well with it. She is even sleeping a little better. She has had a runny nose for the past week and we are watching her very carefully, hoping and praying that she does not develop a fever or cough, as either could signal trouble for Lucy and would send us straight to the hospital. While we are SO sick of the cold weather and snow, what we are most anxiously awaiting is the end of cold and flu season. We have heard that this year has been especially bad for flu and RSV. Come on spring!
We head to clinic for a long day on Thursday. Lucy will get chemo, an antibiotic and IVIG, all by IV, so this will take a while. Hopefully everything will go smoothly.
Lucy had a GREAT day at clinic yesterday. This was our first blood test since starting the chemo-at-home that Lucy will take for many months. The results were excellent; Dr. B was very pleased. Her counts were just right – not too low, but low enough still that chemo is doing its job. More good news – Darth has completely closed up and no longer needs a bandage! There is still a scab over what will certainly be a scar, but a much smaller scar than I think anyone expected. It’s thanks to the immediate expert attention in the hospital and Josh’s excellent wound care at home.
One of the slogans of childhood cancer awareness is “fight like a kid”. I love this slogan, it makes so much sense to me now. During the really hard times, I can see Lucy’s resilience; she never seems defeated or depressed – the advantage of being a baby. But it’s during this “not so hard” time that I see another side of what this slogan really means. Lucy takes several daily medications, including chemo, she has these annoying tubes dangling out of her which mean a permanent adhesive patch on her chest, food (that we keep trying to shove in her mouth!) tastes weird, and she can’t really leave the house. However, none of this diminishes the excitement of crawling into her sister’s room as fast as she can, chewing on a diaper box, slapping Dad’s face, or climbing all over anyone or anything that isn’t moving … much. She is fearless and gets into everything, which is awesome. Cancer may cause her to take a pause once and a while, but it will not slow her down!
It has been almost a week and Lucy has been doing great on her daily dose of chemo at home. In fact, I often have to remind myself to handle it with care – it’s chemotherapy in that syringe, not vitamin D! It’s almost impossible to tell if a baby is nauseous, but Lucy is still eating pretty well so we are happy. Her energy is still high – she is crawling and playing like crazy. We go back to clinic on Thursday for chemo and, as always, to check her counts. This will be the main indicator that her dosages of chemo are correct. The goal is to keep her ANC between 1,000 and 1,500. This leaves Lucy with a bit of an immune system, but it is still pretty low. I talked with Dr. B about whether or not we could ease off “lockdown” during this phase of treatment and, unfortunately, during cold and flu season, the answer is “probably not”. Lucy is feeling so well and acting so rambunctious that it would be easy to slack off on my obsessive toy cleaning and hand sanitizing, but it was a good reminder to keep obsessing, just a little bit longer.
Also, “Darth” seems to be closing up nicely. We are on our own for dressing changes now, and I have actually managed pretty well on my own. I think someone from surgery will come take a look at Darth again at clinic this week, but I suspect it may be the last time.
Staying in the house is certainly no burden, we are loving it right now. Especially after a long hospital stay, and with Lucy feeling good, this feels like “normal”. Violet has even been staying home with mom and Lucy a few days a week. She was signed up for preschool only three days a week this year, but has been attending everyday, all day since Lucy’s diagnosis kept mom and Lucy in the hospital most of the time. It has felt so good to be home with my girls, just hanging out.
As we enjoy these “quiet” treatment days, I still pray for Lucy’s continued remission, and cure.
We have taken many pictures and posted some of them of Lucy laying in a hospital bed hooked up to an IV. But there is something different about the cover photo to this post, something exciting… Lucy is in the clinic not the hospital! The clinic was hopping yesterday and our little responder was part of the buzz. Lucy gets so much attention when we go to the Costa Center, it’s so sweet. They all knew about her long, rough hospital stay and were SO happy to see her back in clinic. They were super busy yesterday, and after a long day Lucy got the first of what will be her weekly chemo infusion. It went great, and so far, she has had no noticeable side effects. The surgery team came to look at “the wound” (I told Josh we should name it. He suggested “Joey”. I’m taking other suggestions) and they gave us the best news. Dressing changes still twice a day, but just a little hydrogen peroxide and a band aid. No more packing, so I think I can actually handle this.
Today we started the oral chemo that she will take daily. She took it, no problem. The only challenge is the empty stomach rule. She has to take it two hours after her last “meal” and then wait an hour before eating – breast feeding counts. Thankfully we got some great advice from another mom to take first thing in the morning. She’s a little annoyed, but I’ve been able to hold her off so far!
Josh and I admit, we spoke a bit too soon when we scoffed at “only” five days of steroids, thinking we would would breeze through this week after making it through Lucy’s last cycle of 21 days of steroids. Not so much – steroids are rough! Poor Lucy can’t sleep and can’t decide if she is angry, sad, or amused from one minute to the next. Generally, Lucy is content as long as she is being held, pretty much all of the time. This sort of takes Josh and I away from doing the little things, like going to the bathroom, eating sitting down … actually, this probably sounds familiar to those of you with young kids! We joke, because if holding Lucy is all it takes to make her happy, honestly we are thrilled. Moodiness is generally harmless, it’s fevers that we really fear! I’m also grateful that steroid week happens over the weekend because Josh spent most of Saturday and Sunday holding Lucy while I tried to keep a small walking path clear of toys and laundry in our house. Also, the chemo that Lucy got last week is known to cause constipation which we think may be the culprit for one particularly rough night, so we will be on the lookout for symptoms the next time this cycle comes around – in four weeks.
I’m addition to being happy to be at home, our spirits are high at the Bacott house because Grandma and Papa have come to visit from KC! My dad was diagnosed with stomach cancer in May. Lucy and I managed to make a few trips to KC before she was diagnosed with leukemia at the end of August. With neither able to travel during treatment, we haven’t seen each other since then. After chemo, surgery, then more chemo Papa is cancer free and feeling good! His doctors tell him he made it look easy. I think it runs in the family. Lucy has been through some incredibly intense chemotherapy, a skin peeling rash, a blood infection and now a slow healing open wound right in the crease of her leg, yet she continues to crawl and cruise and play and smile. And big sister Violet has energy to match. Which is why we are so glad to have Grandma and Papa here!
We were able to skip our clinic appointment on Monday because the wound is healing nicely. We get a daily visit from a wonderful nurse who changes the dressing, and its great to get her assessment of the healing process. Josh continues to pick up the slack on the wound care while I continue to cringe when I accidentally look at it. We will return to clinic on Thursday where the surgeon will take a look at it and Lucy will get chemo. This starts a new round and new chemo, which is always nerve wracking. Lucy will begin a long schedule of weekly doses of our old friend methotrexate and daily doses of a new chemo called 6MP. Of course we are nervous about the methotrexate because of the skin burning initial introduction, but that dose was 100 times what she will be getting on a weekly basis. No joke, one hundred times! Both chemos are subject to dose adjustments (more likely reduction; they tend to start high) so we will be praying that Lucy gets lucky and hits that “sweet spot” right off the bat this time.
Lucy was well enough to get back on her treatment plan and get chemo on Wednesday. She got a LP with chemo in the spine and another small injection of chemo. Her roadmap included a bone marrow biopsy, but Lucy’s doctors determined this was not necessary since she has already achieved remission. Hooray! She has had a rough time with the anesthesia for the LP these last two times, resulting in a very fussy, uncomfortable Lucy all day. And this time, included a big giant vomit all over Dad. Here is where I must brag about our Super Dad. This would be the second time this admission that he has comforted our girl without flinching as he gets drenched … sorry for the visual, but it happens. Did I mention that he had his work clothes on at the time? During this rough, unexpected hospital stay Josh rushed straight to the hospital every day straight from work, then worked late into the night after he got home. And now that we are home, he does all the wound care.
The best news – we are home! It was a long 20 days, and we are so glad Lucy is feeling better. After one last dose of antibiotics on Thursday evening, we headed for home. Lucy is also on a 5 day burst of steroids this week which makes me extra grateful to be at home. Steroids make Lucy a bit cranky with a dose of insomnia. Being at home means Josh can help with Lucy at night, when she wakes sometimes every hour. Only two more days to go! Her wound is healing very well, but still requires two dressing changes a day. A nurse will come once a day to help and Josh will do it (while I try to keep Lucy calm while not looking at it) the other time.
Since Lucy has been home she has really been moving! She is crawling all over the place, and fast! Having mastered pulling up, she is “creeping” along now, using anything and anyone for leverage, including her sister! Speaking of her sister … her preschool class has seen cases of stomach flu, pink eye and RSV recently so we are praying Violet can dodge these infections! Actually, we are grateful for the responsible parents who report the illnesses, because it means we can try to keep Violet away, if possible. No one likes to be sick, and it’s going to happen, but it is scary for Lucy.
This week marks the beginning of a phase of treatment that we have been looking forward to – mainly outpatient. Lucy has made it through the high dose chemotherapies, and we are so glad to have them behind us! If things go well and Lucy stays well, the next inpatient chemo is in seven weeks. Seven weeks! At HOME! This stage seemed so far away when it all began. In fact, another milestone today – Lucy is 10 months old, and this date also marks five months of treatment. Lucy has been fighting leukemia half her life. And what a fighter! Seeing her in action these last two days, we are so proud of our little Responder!