Well Lucy’s BMA last week didn’t leave us with a definitive answer for treatment as we hoped. Lucy certainly keeps us on our toes! It’s complicated, and nothing has been completely ruled out yet, which is good, I suppose. Honestly, the wanting and waiting and wondering and second guessing is pretty exhausting, so we will not be going into any details just yet. The best answer I can give is that we are leaving no stone unturned and no expert unquestioned to find the absolute best treatment for Lucy.
Because of the uncertainty about the direction of treatment, we have been granted another chemo-free weekend at home, which is so fantastic!! It is surprisingly easy to enjoy this “bonus” time at home, and I credit the amazing support of our family and friends and incredible, wonderful caregivers at Cardinal Glennon. Josh and I obviously have a say in this decision, but it is an indescribable comfort to know that Dr. B and our “people” at CG love Lucy and are working so hard to get her the absolute best treatment; they have our gratitude, admiration and trust.
Actually, today was a great day! We felt it was finally safe for Josh and Violet to come to the hospital today. Over the past day or so Lucy has been saying “daddy, Vi, home” meaning she knew they were not here, but at home – clearly she missed them. Today, she spent the entire day in daddy’s arms or sitting next to big sister Violet playing. She laughed, she ate, she played, and she walked!! She was so busy she did not nap at all! She clearly missed the other half of the the Bacotts,. It was just amazing to see her so happy. In fact I have even forgiven her for throwing up in our bed last night then staying awake until 2 am … but I’m hoping for a better night!
Lucy is coming out of the fog, slowly but surely. It started with her sweet little voice emerging, then she was sitting up, playing, and eating a little. Steadily she is eating more and really, really, enjoying watching Curious George and Strawberry Shortcake over and over. She has started a trend of enjoying watching tv and eating chips in the middle of the night. Cute the first time, but not cool anymore Lucy. Actually, it is still pretty cute, and still a welcome change from the last few weeks. One more hurdle – Lucy still doesn’t feel like standing or walking, even though her ankle is much, much better. I have a feeling that the first glance of her playroom at home, with big sister to play with will have her running in no time. Home feels closer and closer and we can’t wait. A few things need to happen first – Lucy needs to be off antibiotics and IV nutrition. The IV nutrition is becoming my personal battle, but I understand that it has to be a slow wean, even though she is eating pretty well. Antibiotics can stop when her immune system kicks in, and great news today – we have white blood cells! For the first time in weeks (feels like forever) Lucy is on the right side if the decimal point with WBC at 1.0. Grow marrow grow!
While Lucy is finally up, poor Violet is down again. After school on Wednesday she got sick with a gross stomach bug again. My poor Violet! She handled it like a champ, and got over it pretty quickly. She was pretty wiped out so she stayed home from school the rest of the week to rest, and just to be extra safe, she and Josh are banned from the hospital for a several days.
Lucy will get chemo tomorrow, the last one for this induction block of treatment. She has received vincristine several times and typically gets some jaw pain, so we hope to keep that under control. It often causes neuropathy in feet and hands, but this is very hard to tell in a little person who can not describe “a tingly sensation”, so we will have to keep an eye on her. This is four doses in four weeks; she used to received one dose a month. Praying for minimal side effects – I really like having my happy Lucy back.
If you believe, you will get anything you ask for in prayer. Matthew 21:22
As expected, Lucy’s hair has started falling out in clumps. It’s not very long but it is very thick, and getting kind of crazy! Every time her head hit the bed she left behind a nest of loose hair. It was in her face, and thanks to her frequent sucking fingers, and rolling around face down in bed, it was getting in her mouth. Yuck! In fact, I think the lose hair gagging her was the culprit for at least one of the mystery vomits. It had to go. It was hard emotionally to cut her hard earned locks, but we think she is still pretty darn cute.
Still muddling through steroid week here, one day to go! Recently Lucy has started an impressive gag reflex with oral medications. Impressive because she gagged then vomited completely at just the sight of the syringe today. Thankfully our team is fine with giving all her meds IV right now. We all agree – let’s just get through steroids!
Not much to update today’s far as Lucy’s condition. It’s essentially turned into a daily battle between Steroids and Ativan (basically the equivalent of Valium) to see which will win the day. Today, Ativan kept her relatively calm compared to the rage that steroids can fuel. Oh, she had some meltdowns, but those we’re mostly short lived and cured by lengthy walks around the hall of 4 North.
She is still having some issues keeping food down which is mostly attributed to the steroids and, even though her bottom has improved drastically over the past few days, she is not a happy camper when it’s diaper changing time. Unfortunately the multiple antibiotics that she is on continue to cause frequent bowel movements, so that’s not going away anytime soon.
As anyone who has read this site through the first battle with leukemia and with the recent relapse has no doubt seen, the roller coaster that is cancer treatment is less about the disease itself and more about the drugs issued to fight it. With as many low points as we’ve seen over the past 18 months, it’s hard to come to terms with the fact that 99% of those issues are caused by chemotherapy. Waves of drugs used to curtail the effects of the ones in the IV tube next to it.
The first time we went through this with Lucy, we were so overwhelmed that it was hard to grasp what was happening day-to-day. Her road map was a litany of drugs that we weren’t familiar with, that were poised to damage her in ways we didn’t understand. A year and a half later, we have come into this second journey with eyes wide open. Not only are we keenly aware of how the majority of these drugs affect her, but we also have a vivid visual of how quickly this process has turned a rambunctious, happy toddler into a girl who struggles to show 5-minute glimpses of who she was two weeks ago.
As a parent, it’s hard to watch.
And that experience is part of why we’re praying for the opportunity to participate in the clinical trial in Seattle that Kenda talked about yesterday. (To understand the technical details of the trial, just Google “Seattle Children’s Hospital Plat-02″). As fascinating as the science involved in the new treatment is, it’s the general motivation behind it that has made it so encouraging.
Throughout the history of the war on cancer, the goal of defeating the disease is so all-encompassing that the well-being of the patient oftentimes becomes collateral damage. We’ve now seen it firsthand. And while we understand that these side effects are to be viewed as a small part of the big picture, they’re still significant, especially for someone too young to understand why we continue to bombard her with more chemicals. The Plat-02 trial has the same objective as treatments such as chemo and radiation, but the leaders of the team in Seattle have continually brought it back to one concept – their goal isn’t just to defeat cancer, it’s also to find a way that minimizes the patient suffering during the fight. Both the big and the little picture are equally important.
To this point the most significant side effect is the high fever that results when the re-engineered T-cells kills such a large amount of cancer cells in such a short period of time. Within weeks the patient can be back to being a normal kid. Obviously the long term outlook is still blurry because the treatment is so new, but the quality of life it proposes is worth the risk even if the more traditional – and brutal – treatments have decades of results to point to.
Our doctors understand the priority that we’re placing on Lucy’s suffering through this process and that’s why they’re completely supportive if we elect to travel across the country to pursue the Plat-02 study. We’re just hoping to get the chance.
Steroids started out pretty rough right off the bat yesterday, but prayers were answered last night when Lucy slept for eight straight hours! Our awesome nurse tiptoed in all night and kindly ignored the pee soaked child and bed because we both knew Lucy needs sleep more than dry pants. I hope this helps her feel a little better today. It is going to be a great challenge for josh and I to be patient with Lucy and each other over this next week; Lord, help us!
Now for the treatment plan/complication. Because of Lucy’s aggressive type of leukemia and a very early relapse, she is high risk, meaning chemotherapy is not an option for a cure for her. Standard of care calls for a bone marrow transplant. However, very recently, a new option has emerged. Josh briefly mentioned this T Cell therapy in a post in September when we were raising money for the LLS. Check back here to read that post and please watch the video – it will bring tears to your eyes! When Lucy was in treatment this was still in trials and a last resort option only. Now, however, it is available to Lucy! There is a catch, sort of. The treatment is in Seattle, but we will find a way to get there and be there if Lucy qualifies. We would do anything. The qualifying part is the tricky thing. You know how we were begging for prayers for Lucy to be in complete remission after these four weeks of induction? We may need to revise that …
The T cell therapy engineers Lucy’s own cells to attack the cancer cells in her body. So, if she is in complete remission with zero minimal residual disease (MRD), then she would not be eligible for T cell therapy and would then go forward with transplant. We should be happy if Lucy gains remission, but we do not want to put her through transplant. It is a brutal process (chemo, radiation) which carriers serious potential for fatal complications and the side effects are late acting, permanent, and guaranteed. The T cell therapy will be hard on her body when the battle begins inside her body, but we are talking days, not weeks/months, and the recovery is much, much quicker. There is still much unknown about this new therapy, however (especially after watching Lucy suffer this week), we still vote for T cells. Unfortunately, this is not a decision we get to make, but we can pray about it and ask for prayers.
We are extremely lucky to have the full support of Dr. B and everyone here at CG. We are getting our ducks in a row in case Seattle is an option. Our social worker is looking into medical flights and Dr. B has been in touch with Seattle on our behalf; this is after reaching out to every hospital in the country that might possibly offer this treatment. We don’t take her support for granted; we a re extremely lucky to have her, she will do anything for Lucy and us.
Give all your worries to Him because He cares about you. Peter 5:7
Here is a link to a video specifically about the Seattle Children’s trial that we are hoping to join
Two steps forward one step back. Lucy’s poor immune system is still struggling. She got a platelet infusion yesterday and blood again today. I am starting to lose track of how many so far. I am reminded of how incredibly grateful I am for blood donors, it’s easy to take for granted that it is there when Lucy needs it.
After an OK day yesterday Lucy spiked a fever last night. She remained feverish all night and barely slept. Cultures were taken and one of her antibiotics was switched. No bacteria has grown which is good, but gets an allergic reaction to this antibiotic so she has to get Benadryl with each infusion four times a day. She has been groggy and grumpy and totally out if it all day, barely eating, and threw up this evening. We can not figure out the vomiting! Although her bottom is much, much better, Lucy has been complaining a lot about the irritated blister in her ankle. We are trying pain meds around the clock for this, which is adding to her stupor today and maybe the vomiting? Hopefully this doesn’t lead to another sleepless night, but in case it does, Josh is staying the night to help me out – a much, much needed break.
We have been spending a lot of time exploring all the options for Lucy’s treatment, and it’s complicated. More on this later, I’m too tired to make much sense tonight.
Tomorrow Lucy will get chemo and start a very much dreaded five day pulse of tough steroids. Please pray for our little responder to find some comfort and peace, and mom and dad would really, really love to see a smile.
Lucy has slowly been coming out of the dark. Thank God. It started with a few words, then she briefly lifted her head off our shoulders, and finally started eating and drinking. The good news is that she is no longer crying, crying, crying all day. That was really hard. She still is far from her old self, and until late this evening hadn’t walked or even stood up on her own since Friday – she hadn’t left our arms/laps. But tonight, Lucy finally sat at the table with Violet and they played with play dough and shared a snack. Lucy also played in the playroom tonight! She stood very tentatively at first, taking small, stumbling steps, but she was anxious to play! These are all great leaps in the right direction.
Unfortunately, Lucy is still in a lot of pain and the source has reared it’s ugly head. Her bottom is so red and raw from lots of antibiotic diarrhea paired with low counts. Basically, this is induction chemotherapy – it can’t beat down cancer with out beating down the rest of the body. Her counts are still down to nothing. She got another platelet transfusion yesterday and another blood infusion today. Platelets are getting low again. This means recovery is slow for Lucy, and we have to keep her comfortable until her body can heal. She is back on the morphine PCA, but it is a push button dose only, not a continuous drip. We hope not to have to use it very often but it’s a good solution to her excruciating pain with diaper changes. We have also set up an elaborate diaper changing station with powder, cream, special towels, etc. and it seems to be helping.
The days have been rough, but the nights have been surprisingly sweet. Snuggling with Lucy in my chair bed all night is the best comfort. Even a few hours of sleep are enough when hear her sweet voice call “mom” in the middle of the night and I can comfort her back to sleep with a whisper or a snuggle.
Thank you for the thoughts and prayers, it has been so good to see glimpses of our Lucy again. We are praying for a really great day or two before Lucy begins five days of steroids on Saturday, and chemo.
Back in daddy’s lap watching her favorite show.
We saw a bit of sunshine through the clouds on Friday evening when Lucy perked up for her big sis, but unfortunately it was short lived. Over the weekend lucy has just gotten worse. She pretty much cried all day Saturday and Sunday.
Saturday afternoon she woke from a nap screaming in pain, telling us it was her foot. We noticed a small blister on her heel had become more red and enflamed. Antibiotics started, leading to the poops, leading to sore bottom. The night was rough with little sleep. Lucy woke crying several times, very difficult to console. Sunday was mostly crying and we noticed shaking and shivering with every diaper change. Her obvious discomfort led to more antibiotics. So far no bacteria in the cultures, and nothing yet from the urine culture that was sent in desperation, we just have no idea what is wrong. Pain, nausea, loss of appetite, chills, vomiting. The symptoms are many, and so are the drugs. Lucy is completely off the morphine drip but is still getting pain meds, anti nausea, anti anxiety drugs, antacid, anti fungal, antibiotics and tonight she started IV nutrition because she can’t keep anything down. Lots of solutions for an unknown cause.
Lucy’s ANC was 7 today so her body has zero defense. She has had one red blood cell and one platelet transfusion already and numbers keep dropping, with platelets looking like the next likely transfusion.
We are all desperate to pinpoint the cause of Lucy’s misery so we can fix it. But nothing seems to help, and it is agonizing. Josh and I literally walk the halls carrying Lucy all day, everyone watching us with pity because it doesn’t help – Lucy still cries the whole way, but it’s all she wants to do. Poor Violet is getting a raw deal too. All she wants is to be with us both but we have literally been holding Lucy day and night for a week.
Sorry this post is so depressing, but it is real. This is the treatment for cancer and it is so, so, cruel. I am sad/mad that kids have to go through this for a cure …if they are lucky.