Our little Responder has chased the bacteria out of her body and is ready to move on! Lucy is feeling great, giving out smiles and giggles again. It has been a joy to see her reaching for anything and everything again and letting all the nurses hold her … as long as mom is within sight, of course! Just a few more things to clear up and we can go home!
Lucy is finally nursing really well again and completely off IV nutrition today. she could use some work in the eating solids department, though. But she has started signing for milk when she wants to nurse, which is so cute! Lucy is still working on a super slow wean from the narcotic drip. Given that we know she is very sensitive to withdrawal symptoms, we will wait as long as it takes. Thankfully Lucy is down to just one antibiotic that she will need to take for another week. The plan has been to send her home with this one, taken orally twice a day. Right now she gets it by IV but it was switched to oral today to see how she handles it. It was the most disgusting looking medication I have seen. It is really gritty and thick, and of course, Lucy just couldn’t get it down. We are so lucky to have a pharmacist dedicated to oncology at CG, and she is one of the smartest people I have ever met, so I consulted her about our problem. Of course, she knew of a substitute drug, off the top of her head. A few hours later she and Dr. F came into Lucy’s room with suspicious looking grins on their faces. They had a tiny “sample” of each drug for me to taste. Neither were pleasant, to say the least. And being the good sport that she is, Melissa our nurse tried one too and went running out of the room to get a drink of water. We all laughed about it, but poor Lucy is the one who has to take this stuff! I am grateful that our docs and medical team here are compassionate enough to take this into consideration and literally do medication tastings to know what kids have to deal with. So … Lucy will go back to IV while we are here.
The wound care is still my Achilles heel of Lucy’s medical needs. Everyone keeps saying how “great” the wound looks, so I thought I would be brave and stay in the room during the dressing change this morning … and had I eaten breakfast, I might have lost it. Truly, it is healing well. It is just a really deep wound, with many, many weeks of healing time left. So dressing changes are one to two times a day and we continue to experiment with the best pain medication for Lucy for this. A big part of her discomfort is being very scared but we can’t discount the very real pain too. This is another reason I’m not rushing to get home. I feel kind of like a failure that I can’t do this for Lucy, but Melissa reassured me that sometimes I just need to be “Mom”. After my obvious discomfort, today the surgery nurse said that home health care will be called to change the dressing for us at home, but there will be emergency changes, I’m sure. Many of the changes here have been prompted by a poopy diaper.
Lucy’s counts are all great, so she is ready to get back on the treatment schedule. She will get chemo on Wednesday. This time it is an LP with chemo in the spine and a small injection of vincristine. She is also supposed to start a five day round of steroids too, but we need approval from the surgery team because steroids can hinder wound healing.
Meanwhile Lucy is making moves of her own. She just loves to hit developments milestones in the hospital. She is pulling herself up in her crib with ease and is really, truly crawling. She has been rolling around in her crib for a while now, but the other day I woke up to find her sitting up! All this in the confines of her hospital crib. Time to lower the crib at home! It is amazing that this little girl who couldn’t even bear to sit up, or even be held just over a week ago is moving so fast I can’t turn my back on her for one second. She is unstoppable!
Lucy has made some significant improvements over the last few days – thank you for the prayers! The surgery team here has been following the progress of the wound on Lucy’s leg. Yesterday Dr. V was pleased with the healing process and has decreased dressing changes to once a day, using a new dressing. I had no idea there were so many options besides band aids! We are so relieved that the wound is finally getting better each day now, not worse. Also, one dressing change a day is much easier on Lucy. She gets pain medicine before each dressing change, though it certainly doesn’t stop the crying during the process, it has to hurt afterwards. Of course I don’t want her in pain, but morphine three times a day was knocking her out all day …. thus keeping her up all night! We are slowly getting back to a more regular sleep schedule. Lucy’s counts are good so she has a small team of defense fighting this wound.
Meanwhile on Odell street, the exterminator has done what he can and will continue to treat the house for any and all unwelcome critters. So about the bite … I know that brown recluse spider bites are very serious and can do major harm, but Lucy is ok, really (so no more horror stories please!). We are on day 12 AB (after the alleged bite) and though it is not pretty, the wound is healing. At this point, the venom would be long gone and its effects to her skin or system are over. Besides the fact that Lucy is The Responder, early intervention was key. Because of her low counts she automatically got antibiotics as soon as we arrived in the ER, and the wound was cared for diligently by our wonderful nurses.
Before we can go home Lucy needs to finish some antibiotics (she may go home on one still) and be completely weaned from the narcotic drip. We are doing a super slow wean from this to keep Lucy from withdrawal symptoms, so a few more days at least. She is also starting a slow wean from the IV nutrition. Lucy is nursing again and eating small bites of food, but not back to normal yet. I have been very concerned about her gagging and still occasionally vomiting with some feeding attempts, so I asked for a visit from occupational therapy. They were very helpful when we were teaching Lucy to eat from a spoon. And of course … Lucy ate some yogurt and nursed just fine while Molly was here! Still, I was grateful for her opinion about the gagging and vomiting. Basically, she has been through a lot and has a lot going through her over this past several days so they told us the reaction is not unexpected and she should bounce back when things get back to “normal”.
Since we are at the hospital pretty often, we have made friends here, and this week many of our friends are on the floor for treatment. This helps the days go by a little faster to see friendly faces, and being off isolation means we can roam the halls in the wagon, yea!! Although our trip to the ER has turned into weeks in the hospital, it is time well spent when we get to see this smile again.
Lucy is really keeping her parents and everyone at Cardinal Glennon guessing. She was doing so well that we took her off the narcotic drip on Saturday morning, yea! We were chatting and joking with Dr. S who thought maybe we could go home on Monday, but she would need to start nursing first, of course. About five minutes after the doctor left the room, Lucy vomited, then a few hours later, spiked a fever. She still refused to eat and vomited a few times through the night, and the fever stuck around too – probably because she couldn’t keep the Tylenol down. After discussion with Dr. S Sunday morning all signs were pointing to withdrawal from the narcotic. She was not “addicted”, it was just weaned too quickly. So she is back on the narcotic, at a super low rate, so no problems with itching. She is much happier and no more vomiting. But still not nursing, at all! So she is still on IV nutrition, which I really want to get her off, but she needs the nutrients to heal the wound. Ahhh, the wound …
The hits keep on coming. In the “you have got to be kidding me” category is a new diagnosis for Lucy. During the dressing change today the nurse was concerned about the growth of the wound and called in the surgery team for consult. The surgeon is quite certain Lucy is suffering from a bite by a brown recluse spider. Yes, read that again folks. So …. we have an exterminator coming to the house tomorrow. What does this mean for Lucy? Really, only time will tell. It will delay her chemo schedule, hopefully not by too long. And the healing process is very long. The surgery team will keep tabs on her now too. Of course this is painful and three dressing changes a day are not pleasant either. This is very unexpected, unfamiliar territory so we don’t know how long Lucy will be in the hospital, but I am so grateful that we are here and getting such good care here.
Praying for a speedy recovery and less pain for Lucy.
Slowly but surely Lucy is making progress. As detailed in the last post, Lucy is on a LOT of medications, and she is getting to the point where the treatment might be as bad as the ailment. That kind of sums up chemo too – poor Lucy, she just can’t win! It is hard to watch her suffer, but it’s all to help her get better in the long run, so we comfort her as best we can. Both antibiotics have been changed. One to see if it will help calm her fevers, the other (that she is allergic to) to calm her itching and red skin. So far, fevers are gone and itching seems to be subsiding. As far as the redness, the damage is already done in some places. The back of her head is red and chapped and her eyes and nose are pretty beat up too – both from constant rubbing and squirming. The narcotic drip has also been steadily turned down and I’m pushing to get her completely weaned off by tomorrow because it is known to cause itching, and has done so to Lucy in the past.
The cellulitis has really calmed down as well, we can tell Lucy is not in nearly as much pain as before. However, the wound … oh boy the wound! I have found my true weak stomach here. The blood blister in her groin has finally evolved into what can only be described as a yucky open wound in her leg. Don’t ask me about it because I don’t think I can look at it again! Thank you God for putting Josh and I together because he has stepped up and is the one who helps with dressing changes. Kim, a fabulous surgery nurse came to see it and made a plan to clean and dress the area. And the wonderful Melissa has been our nurse through this and kicks me out of the room for the dressing change, telling me “this is my job, you don’t have to see this!” It’s defiantly going to take some time to heal, and will probably push back her next chemo which is scheduled for Thursday.
Although she is finally comfortable Lucy is still not nursing much and has vomited a few times. I finally relented to some IV nutrition supplement. She needs it to heal her wound, and hopefully make her feel even better and want to nurse again. Praying really hard for this! I feel like it is a slippery slope when kids fighting cancer don’t want to eat, and even worse when the kid should be learning how to eat and trying new foods. I don’t want Lucy to get behind.
I finally got Lucy in the wagon for a stroll around the floor last night, she loved it! And I’m getting a great work out dragging her full IV pole around.
Lucy is doing a little better today. Yesterday morning she was still in pain after a fitful night of sleep – very little sleep, actually. I was skeptical that anything would help, but Dr. S assured us that more could/ should be done to diminish her pain. Her goal was to see Lucy sitting up and playing. So her narcotic dose went up three times yesterday, and Lucy was up! Then she began to act a little “tweaked out” … As you can see by the blur where her hands should be in this picture! I’m so glad Dr. S was there to see it, it is hard to describe, but she put it best when she said it looked like Lucy wanted crawl out of her own skin. She is on a fentanyl drip for the pain and narcan for its side effects – which Lucy was displaying greatly. Her nose and eyes are red and swollen from scratching; she is so itchy. So the fentanyl was turned down, and later narcan turned up. She is still willing to sit up and be held without wincing in pain, so hopefully we found that “sweet spot” for her pain meds! Actually, I hope to start weaning her off it altogether.
The CT scan came back normal, which is great news. Now we feel good that we aren’t missing something else. The wound/cellulitis in her groin area is getting better, but it will probably be a long healing process. The wound nurse is going to come by today to advise us on how to best dress the area. The specific bacteria has been found, so Lucy is down to two antibiotics. One to treat the bacterial infection and another for the cellulitis. They continue to take blood cultures and so far all the cultures after treatment have been negative, so the antibiotics are working. In addition to this infection interruption, Lucy has been on neupogen for 12 days now to bring her white count up, and that can cause bone pain. Her white cells are climbing so I hope she can be off this very soon. Meanwhile blood counts are still dropping. She will get red cells today and platelets soon too, as her level is below the transfusion threshold.
And the list goes on …. fevers! Lucy has been running a low grade fever off and on the last day or so. The doctors are not alarmed because they are on top of the infection danger, and the fevers are not high. But this is just adding to Lucy’s discomfort.
Good news – Lucy is officially off isolation, her swab came back clear of the cold virus! Hopefully in the next few days she will be feeling well enough to go for a wagon ride, we both miss that! Violet has been to the hospital to visit the past two days and this has been great! Getting these sisters together is the best medicine. Lucy knows her sister’s voice and perks up immediately when she hears her, scanning the room to set eyes on her idol. And the BEST surprise …. Jennie came to visit! I love how she walks in the door with no warning, like its no big deal – that she just drove from Kansas City!
So far this morning, Lucy is resting peacefully, catching up on her sleep. She has been on monitors since we got here (usually she doesn’t need them, but it is necessary with narcotics)and her heart rate is the lowest it’s been in days, which is a good sign that she is finally comfortable. We shall see how she feels today – this is the true definition of taking it day by day. Thank you for the thoughts and prayers. This is a long road, and it means so much to us to receive such a heartfelt response when Lucy hits a rough patch like this; it really helps!
I’ve been putting off this next update hoping for some good news to report, but unfortunately Lucy is not there yet. She was put on a continuous narcotic drip for her pain, which is not subsiding. The dose was increased for the second time this morning, and I am really hoping to see some improvement today. She is somewhat comfortable laying down but the pain when she is moved is obviously excruciating. This normally rambunctious playful girl can not even bear to sit up, so partially due to my concern, she had an ultrasound and CT scan of the abdomen to make sure nothing else is going on. It’s heartbreaking to think that the cellulitis in leg/groin area is causing such widespread pain, but I also hope it is nothing more. And we can actually see this source of pain for a change instead if just guessing.
Although Lucy is miserable, we are somewhat comforted by the fact that the doctors and nurses up here on 4 north tell us that a bacterial infection is pretty common, and few kids escape it during their treatment. Fighting an infection in a kid with zero immune system is just hard, and it won’t happen overnight. For now I just keeping praying for all these meds to do their jobs; wipe out the infection, ease her pain, help her immune system bounce back. I’m hopeful that the next picture I share will be a smiling Lucy.
Unfortunately Lucy has gotten worse since we arrived yesterday. Her blood cultures tested positive for a bacterial infection. They always start antibiotics when she gets a fever “just in case” but now that infection is confirmed she is on three antibiotics and they will continue to pinpoint the bacteria so that they can use a more specific antibiotic.
Also, after we got settled in our room a few hours after arriving through the ER I suddenly noticed an ugly, dark little mark, like a blood blister in a crease on her leg where her diaper lays. It was quite startling, as nothing happened to make this mark! We have always been warned to watch for bleeding or bruising indicating low platelets, and with a level of 7 it is likely that the smallest bump or diaper irritation caused it. But Dr. B thinks this could be “the culprit” of the infection; like a cut so tiny we didn’t see it could have gotten infected with her poo or other bacteria from her body. Either way, it steadily got worse, swelling and spreading redness, and began to obviously hurt Lucy. Very badly. So she is on morphine for pain, and has been sleeping a lot. We hate seeing her so out of it, but every little movement causes her to cry in pain so we will be liberal with the pain meds as directed!
With three antibiotics and various other meds her IV pole is stacked with pumps. Her lines haven’t been this busy since her induction phase. It sounds like our nurses are trying to coordinate a busy family’s extracurricular activities as they plan Lucy’s med schedule. Her antibiotics also have to rotate going through both lines since the infection showed in both. Thank God for our nurses!
So now we wait, and try to keep Lucy comfortable. Napping with dad helps. I’m doing my best to keep her nursing, and still, since every movement hurts. We are watching this bruise closely and praying that it doesn’t turn into an abscess, and praying for the antibiotics to wipe out this infection. We’ve had enough of the worse … really need to see the better, soon!
Well we didn’t get the quiet weekend at home that we had hoped for. Lucy woke up with a fever Saturday morning so back to the hospital we go.
So far, Lucy has chosen a holiday and a weekend to get a fever, thus requiring a trip to the Emergency Room at CG instead of a clinic visit. This is no fun for many reasons, one being the price tag! However, we remain grateful that we live so close that the travel is not a burden for us – this is not the case for many of our friends here. We were especially grateful for our close proximity this time, as things went downhill fast. Lucy has been pretty clingy with a diminished appetite the last few days, but this was expected. We actually thought she was turning the corner when she ate some sweet potatoes last night – her first solids in a day or two. But this morning she woke up crying, which is unlike her, and felt warm. After checking her temperature repeatedly for an hour it hovered around 100 so we called the doctor on call and she alerted the ER that we were coming in. By the time we got to the ER 30 minutes later her temperature was 102.8 and she was miserable. They drew some blood and her labs showed that her white blood cells have officially bottomed out at zero. It’s one thing to know this is going to happen, but a very scary reality to know that our baby girl literally has no immune system. Her platelets were at 7, which is crazy low. She gets transfusions below 20, so needless to say she got platelets today! So we are checked back in to the hospital, luckily in our old familiar room, still on isolation but this time more for Lucy’s safety.
She has been started on two antibiotics and Tylenol for the fevers. She is tired and cranky right now, just wants to be held … mostly by mom. We will be here for a few days, until fevers are gone for good and some kind of immune system shows up. Hopefully sooner rather than later!
Josh surprised me with that last, touching post. I am right there with you all – it made me cry too! And of course, I agree that he is pretty amazing too. I think he has earned a pass to forget our anniversary this year! Just kidding, but I guess you can leave your dirty dishes in the sink for a while. Josh is kind to give me so much credit but the truth is, at Cardinal Glennon I’m never alone – our nurses are amazing! During the worst night of her vomiting, I think Susan caught just as much puke as I did, and comforted Lucy through it while I cried too! And during the days, Kara had cool washcloths for the high fevers and found a bathtub to soak Lucy’s very sore bottom from the constant diarrhea. Just two of the wonderful nurses on 4 north that we consider family now! (And Lauren, we miss you already!)
After a rough round and an extended stay, Lucy is back home! As josh mentioned, Lucy’s fevers kept us in the hospital until Monday, just in time for 12 inches of snow to hit the ground. And that’s exactly how much is still on the ground on our city street. Our night in shining armor came in the form of Kandace and her four wheel drive – she picked us up from the hospital and took us home! She even brought us to clinic today, since my car is still here. I will be getting behind the wheel for the first time today since snowpocalypse … Wish me luck!
We knew this last round of chemo was going to be a rough one when we saw the two week gap on her roadmap between scheduled treatments – the longest break since it all began. Lucy will need this long, at least, to recover. Not only was the chemo hard on Lucy going in, but later effects include drastically lowered blood counts … like a white blood cell count expected to hit zero. We will be giving Lucy neupogen every night to bring her counts up, and we hope she doesn’t suffer from bone pain from this, or mouth sores for that matter, as it is a possibility again. Lucy is getting a blood transfusion at clinic today and will likely need platelets on Monday. Meanwhile we just try to keep her comfortable, and being at home is step number one! Dr. B has warned of the possibility of a fever which would mean back to the hospital, but we are hoping for a boring, weekend in the house instead.
Some exciting news – if you live in St. Louis look for Lucy’s billboard debut! The leukemia and lymphoma society has asked to feature our little responder on their latest marketing campaign. Going up this week on billboards at hwy 44 and Jefferson and hwy 40 and Grand :
Kelly, the marketing manager chose these pictures of Lucy because she believes they are very impactfull and will encourage people to help find the cure. We agreed to let them feature our sweet Lucy to raise awareness as well. In particular, to raise awareness of the need for more research for pediatric cancer. There are so many sad, scary and unfair statistics to list, if you wish to know more, one of my favorite sites is the truth 365
As everyone is St Louis can confirm, we got a touch of weather today. And if you live anywhere within the city limits, the chances of your street seeing a plow in the next 48 hours are zilch.
Meanwhile inside Cardinal Glennon, Lucy was still battling her chemo-fueled fever that climbed as high as 102.8 which meant she wasn’t going home regardless of the weather outside. Unfortunately, it also meant that not only was Lucy (and mom) under isolation, so were her dad and sister a few miles away.
So as of this writing, Kenda has been solo in Lucy’s hospital room for over 24 hours and likely is staring at another 18 or so before she gets a small break or an eagerly anticipated discharge. And not just a normal 24 hours, 24 hours where Lucy is struggling to fight a fever, refuses to sleep for more than 30 minutes, is pooping every hour and insists on being held at all times. And to make matters worse, room service can’t bring her a giant glass of wine.
Just consider it another notch on her resume for the ‘Mother of the Year’ award.
And let me tell you, that resume is about as sparkling as you could ever imagine. While Lucy’s situation has required and received help and support from a huge cast of people, this whole show runs through Kenda. When reading the post that she wrote thanking everyone for your contributions, I couldn’t help but think of how big of a thank you that this family owes her. She has literally been by Lucy’s side for all but a few scattered hours since this started in August. She is the irreplaceable captain of what has been an extremely challenging journey.
I’ve heard some people say that Lucy is her full time job right now, but that doesn’t even begin to capture the extent of it. People get breaks at their jobs.
When Lucy grows up and I tell her the story of when she battled leukemia, I’m not entirely sure how I will do justice when explaining the role her mom played. It will be fun trying though.