After six weeks in the hospital, lucy is finally OUT! After a long day of packing and several trips to the car we are all at grandmas house. It is wonderful! It will take us a while to fall into a routine, and I’m glad Josh is here for the weekend so I can get organized. Lucy was too grumpy to attend her own going away party, but the crew on 4 Henson treated us like royalty anyway. They all took such great care of Lucy.
Lucy’s dramatic steroid mood swings have earned her the “affectionate” nickname Sybil, but so far, she is much happier here than at the hospital. Things that used to cause a full on rage/crying fit like bath, and medications have been much less dramatic. I hope Violet and Lucy can fall back into their routine of playing, fighting and constant snacking together! Lucy is still on tube feeds 20 hours a day and we would like to not have to do this for too long. Eat Lucy, eat! Her skin biopsy showed thst she does have GVHD of the skin, probably grade 2 (on a scale up to 4). She has been on steroids for a few days and she is responding … slowly. The rash still looks pretty bad, we are praying this heals quickly and for good! Chronic GVHD is a rude beast that we hope to never see! If she continues to respond to steroids chances are good she can get over this hump and never look back. We really, really hope so!
Lucy had a great weekend and continues to feel better every day! She is completley weaned from her continuous narcotic drip and up to full feeds through her g tube which, I believe, both contributed to her much, much better attitude. She is talking to her nurses so much now instead of hiding her face and crying, walking the halls, playing with other poeple and even nibbling food! I found an organic, GMO free real food formula made for tube feeding and we are buying this ourselves to give to Lucy instead of the hospital issued cans of formula and I think it is helping her tremendously. In fact, she hasn’t vomited once since starting this stuff! The ultimate goal is for her to actually eat food herself, but I doubt I could ever get her to eat broccoli, kale, spinach and turmeric which are just some of the all natural real food ingredients in her formula, so I’m kind of excited about the g tube now. Plus, Lucy has accepted it too, she even showed it off to Violet “Vi, look at my magic button, my medicine go in there”.
Despite this great progress, Lucy remains in the hospital because of her nasty skin rash. Since ending a short, low dose of steroids last week, her skin has flared up into a very itchy, bumpy rash. Dr. M does not think this looks like GVHD of the skin, but some kind of histamine response, to a medication, possibly. A skin biopsy is scheduled for Wednesday, along with her first BMA post transplant. The bone marrow biopsy is kind of like a splash of cold water in the face reminding us that despite this growing relief that the “hard part is over” and hope for the future, Lucy still has a 30-50% chance of relapse, based on the aggressive nature of her leukemia. Right now, there is absolutely no sign of relapse, her labs look fantastic, and we expect clear results from her BMA and hope she is still 100% donor. The skin biopsy is often less clear, so ther is a chance it could be inconclusive. Whatever the cause, we hope to grant Lucy some itch relief and her discharge papers, soon!
The weekend is here, which means daddy is in KC and all the Bacotts are together! This really is the best medicine for Lucy. Once again, the arrival of big sis in her room has brought Lucy out of her shell. It is astounding how different Lucy has been since Violet came to visit today. All week the only thing Lucy would say to anyone who walked in the room is “I don’t want you talk to me” or “let’s not talk about it” or simply “I want you stop talking!”. Today, after big sis warmed her up she has been talking to the nurses and giving out stickers! Dr. M has always told us Lucy will be much better when she gets home, and I have to admit, I was a little worried, but today I know he is right – we saw our familiar Lucy today!
Lucy’s pain from her g tube surgery is much, much better. It will still take some getting used to, but I feel really good about Lucy’s acceptance of this new “button”, which is a huge relief! She is being fed through her tube, very gradually to give her belly time to wake up. I’m thrilled that it is going so well because while the ultimate goal is for her to eat real food, I know the term “real” would be used loosely right now (chips, chocolate, chips!) and I’m glad to give her the complete nutrition that will really help her heal. It was a big decision for Lucy to get the g tube and her docs were very hesitant because surgery, especially one that adds a possible source of infection, is risky for someone on immunosuppressant medication like Lucy. She will be on medication to suppress her own immune system to prevent graft rejection for at least a few more months. I am praying we can keep her safe, which now includes maintenace of the g tube, during this time. One important way to keep her safe includes lots of medications which can now go through her g tube, wahoo! Every day more medications are switched from IV to oral to get us discharged – we are getting close! Thank goodness, because when Violet and Josh left the hospital tonight Lucy asked, for the first time, “can I go too?”
Well at least they are sitting next to each other while the play on their iPads, I guess?
Violet reading a book to lucy, that’s more like it! Lucy finally let me paint her nails and take her picture today – with a few smiles.
The g tube is in. Lucy has a small button outside her belly, called a Mic-key. Surgery went well this morning and Lucy started getting nutrition through her tube this afternoon. It will be several days before she is up to full nutrition by tube, and medications will switch to oral slowly too. Lucy is not very happy about this new hardware. Mostly she is scared, and today has been in a lot of pain. I am holding on to hope that this is in Lucy’s best interest. I am very happy to be able to relieve our stress of getting her good nutrition and her anxiety of taking lots of oral medicine. We are trying to keep her as comfortable as possible and I’m grateful for prayers for minimal pain for Lucy.
Lucy has been feeling pretty good the last few days. It has been 26 days since her transplant, 32 days in room one on 4 hall and I have to admit, I had hoped to be out of the hospital by now. However, Lucy does things her own way, as usual! Her reactions to TPN and the NG tube are pretty unique. I told Dr. M, if there is a documented rare adverse reaction, Lucy will have it!
Lucy is fully engrafted, counts are coming back, and her pain and nausea are pretty much under control. So what does she need to accomplish to be discharged? Basically, she needs to break up with her IV pole. Though she hasn’t had pain in many, many days, she is still weaning very slowly from her continuos narcotic drip, thanks to careful consideration by her team here based on her past difficulty with weaning. She needs to be able to take medications orally; right now she is receiving all by IV. She also still has a persistent rash that Dr. M needs to see some progress on (though it doesn’t bother her much). And finally, she needs to get proper nutrition – the biggest hurdle.
Three different creams a day aren’t helping Lucy’s skin as much as they should so she has started a short, small dose of steroids to help. Dr. M also agrees that there is more going on with her skin; some areas are itchy and look more like hives, likely again a reaction to the TPN, so that’s not going to work for her nourishment. They discussed an NJ tube, placed under sedation, but most of us agree Lucy wouldn’t tolerate it. She has literally been having night terrors about the NG, waking up crying about her “nose tubie” and clawing at her face … it wouldn’t stand a chance. After lots of careful consideration, the decision is that Lucy will have surgery to place a G tube tomorrow. This is a Gastric Tube, another type of feeding tube that goes straight through her belly skin into her stomach. The docs had hoped to avoid surgery so soon post transplant if at all possible, and I’m not very excited about poking another hole in my baby, but it could solve two of Lucy’s biggest problems – eating and taking medicine. At this point I’m desperate to get her off the TPN, anxious to start healing her gut with good nutrition, and thrilled at the thought of not fighting the “take your medicine” battle. It could mean some pain and/or discomfort for Lucy now, but will hopefully be good for all of us in the long run – the story if Lucy’s life!
Surgery is tomorrow morning around 9 and I’m praying for a successful, easy surgery and speedy recovey for Lucy. At this point, Lucy seems to be suffering more psychologically than physically, and I hope she will accept this new piece of hardware with ease.
Lucy’s NG placement yesterday went worse than I think anyone expected. I will spare the horrible details and just say it was extremely traumatic for Lucy and the five of us who had to be involved in the process. The tube did make it down but within a few miserable hours Lucy threw it up so out it came. Standard procedure is to put the tube right back in again when kids throw it up but I did NOT want to do it again and our nurse agreed 100%. I thought it was awful the first time we tried weeks ago, however, we all hoped it would be better this time, but it was truly traumatizing for Lucy. After watching Lucy with the NG in, our nurse doesn’t think she will be able to learn tolerate it.
So now Lucy is stuck in a difficult place. She is not eating and barely drinking, so she needs support to get the nutrition she needs. The team has been discussing every option (including NG again!!) for Lucy because it’s not just about nourishing her body and keeping her from losing weight, but also keeping her electrolytes stable because this could be extremely dangerous. The plan for now is to adjust her TPN and try again. The combination of TPN and lipids is “total parental nutrition” containing everything her body needs in its most simple form, which is a lot of stuff. Having an allergic reaction to it is like reacting to a piece of cake. Was it the eggs? Milk? Sugar? Flour? Yellow #5? The pharmacy team is stripping it down and starting with Lucy’s “base” fluids and adding one element at a time, like a food allergy challenge. If Lucy gets through the TPN then it could be the lipids (pure fat) which contain trace amounts of common allergens like eggs, and soy. New allergies are a concern to me, I just didn’t think we would be dealing with it so soon! Along with her donor’s blood DNA Lucy will inherit her allergies, which makes sense because it’s part of the immune system. We have no idea what she may be allergic to now, with no family history of her new cells. It could be a blessing that this happened because the wonderful ladies who discussed the TPN plan with us are really on top of this and have a plan to get allergists involved to test Lucy when and if necessary.
The simplest solution to all this would be for Lucy to start eating and drinking, however, she has a big hill to climb to reach full nutrition by herself. Her stomach has shrunk and the environment in her gut is not great after not eating/digesting food for weeks. It would be a slow process even if she had an appetite, which she doesn’t. We need an appetite miracle!
Let’s end this post with the good news that the title promised. Lucy had her first chimerism blood test this week. This test measures what percentage of Lucy’s blood is her own vs donor blood. You could say this test measures the “success” of the transplant because the goal is that Lucy’s body accepts her new cells completley. We are thrilled to report Lucy is 100% donor! This test will be repeated long term and we hope it will not drop, because it could, and that would not be good.
Lucy has been really tired the last few days, and a rash is back, most likely true GVHD this time, luckily mild, so far. She got a blood transfusion this morning and phase one of TPN started this afternoon, so hopefully she will perk up soon.
It has been three weeks since Lucy’s stem cell transplant and so far, so good! No major complications, thank God, just a few “tiny dramas”. Over the last few days I felt like Lucy’s progress stalled again. She wasn’t any worse, but not getting much better. She would tell me periodically “I feel sick” and we asked what/where and she said “I don’t know”. The coughing and vomiting just kept coming back, and her rash also flared back up just when we thought the 3x daily steroid cream was working. These are all minor issues and completely expected after the type of conditioning and transplant Lucy just had, so we shrugged our shoulders and continued the antiemetic medications as needed and pushed off weaning them another day. Then something interesting happened … because, well, it’s Lucy!
Yesterday evening, out of the blue Lucy started coughing nonstop and broke out into hives, pretty bad. Several nurses rushed in and immediately stopped all her meds and gave Benadryl. A few nurses thought it could be the TPN (IV nutrition). As the hives cleared, they started the TPN again and within minutes Lucy broke out in hives again. A dose of steroids rescued her and the culprit was pretty clear – TPN. This is an extremely rare reaction. As our doctor said – really sick people, infants, people with major GI issues, literally live on this stuff. We are so lucky that our nurses have so much experience and have seen this before, during transplant. As a person who has broken out into wicked hives a few times I know it is not easy, sometimes impossible, to find the allergen, so I am so glad it was found so quickly.
Unfortunately, it looks like TPN may have been affecting Lucy for a while without us knowing it (she has been on it over two weeks!) Lucy has not vomited since stopping TPN; it was 3-6 times a day. For the first time in over a week she didn’t vomit during the night. Her cough is almost gone, and the rash she has had for 3 weeks has almost disappeared. The tricky part is that these symptoms are also undoubtedly a result of the stem cell transplant process too, but I think we all feel a little bad that she could have felt much better, much sooner. She is like a different kid today, like the old Lucy. Obviously she can’t get TPN anymore, and it was her sole source of nutrition and hydration because she is not eating and barely sipping water. The only alternative is to place the NG tube again. This will happen sometime tomorrow and we really, really hope she tolerates it better this time. Not only does she need the nutrition, but it will be great for oral medications, which she refuses to take at this point. Getting meds switched to oral brings us closer to discharge! I’m nervous about the NG tube but grateful she is feeling so much better.
My smiling girl is back! Today Lucy actually asked for food and requested chips. Unfortunately, the hospital room service and cafeteria only serve baked chips, which was NOT acceptable to Lucy, so I ordered six bags of chips from Jimmy John’s… and a sandwich, so I wouldn’t seem like a total crazy person.
Guess who just engrafted? With an ANC of 750 today, Lucy is officially fully engrafted on day +18, wahoo!!! There is still a long way to go before she can be discharged from the hospital, but today is a day worth celebrating!
Violet’s visit to Lucys room yesterday was everything we hoped for. Thanks to the encouragement and company of her big sister Lucy got out of the bed with the physical therapy team for the first time in over a week, at least. Violet demonstrated her yoga skills on the mat and blew bubbles for Lucy, eventually luring her into participating. Lucy surprised us all and walked down the hall to the playroom! Just like old times the girls fought over the same toys. Also thanks to violets demonstration and cheerful encouragement, Lucy brushed her teeth for the first time in probably two weeks! Major steps for Lucy yesterday!
Unfortunately Lucy was still vomiting a lot, she was up most of the night coughing and vomiting. Anti nausea medications are no help, the coughing was relentless overnight. Dr. M thinks she has reflux which would be a welcome problem, given the long list of more dangerous possible complications. She started an antacid today and seems better, we are hoping it will stop the cough and most of the vomiting by tomorrow. Tomorrow could be a big day all around because today was the second day Lucy’s ANC is above 500! It’s barely over 500, so we are trying not to get too excited, but if she reached the magic number again tomorrow she will be officially engrafted! Praying Lucy continues up the hill!!
Lucy has hit a bit of a plataue in the healing process. Yesterday her ANC climbed to 240, we were excited! Today, unfortunately, it is down just a bit to 210. She also got a few transfusions, platelets yesterday morning and then a blood transfusion overnight. Her blood counts are actually rising, this was all due to the incident the night before … early Wednesday morning Lucy woke with a bloody nose, her second one since being here, and not really a big deal. But this bloody nose, oh my goodness, THIS bloody nose took the assistance of two nurses and I to stop the bleeding and catch the buckets of blood vomit for over an hour. The bleeding finally stopped after Lucy got platelets, stat! The bed looked like there had been a massacre and Lucy looked like a baby Carrie in her blood soaked T-shirt and diaper. She slept for most of yesterday. She earned that transfusion!
When Lucy’s blood finished around 5:00 this morning she perked up a bit and I was hopeful for a better day, but it wasn’t. Today she has been vomiting. It could be just part of the healing process of her mucositis or the weaning of her pain meds, but Dr. M is hopeful that it will resolve soon. He said today “I hate doing this to kids (transplant)” and he can’t wait until we find a better way. As the director of the CAR T cell studies here at CMH he is working on it! Dr. B was just as reluctant as we were to put Lucy through the transplant process, and she is the transplant doctor at CG. We have been blessed with a great team of doctors who put Lucy’s needs first.
Lucy’s continuous pain drip is being weaned because she doesn’t seem to be in much physical pain anymore, which is great. Her mouth and bottom look healed and the vomiting doesn’t even upset her all that much. My biggest heartache for Lucy right now is that she is so unhappy. We have plenty of toys and crafts in our room, access to a fully stocked playroom and at least two visits a day from child life and volunteers offering toys or projects, but Lucy does not want to play with anything; she angrily refuses. She is grumpy, annoyed and depressed. I’m hoping a visit from Dad and Violet this weekend cheer her up!
The saddest kid in the playroom