It has been a week since Lucy’s stem cell infusion and thankfully, there have been no surprises. We have been adjusting her “feel good” meds to make her as comfortable as possible and the doctors and nurses have been absolutely wonderful with support. We expect Lucy to be in pain and uncomfortable, and she certainly is, but thanks to medications, it’s not constant. She comes out of her cocoon for a few moments each day, which is great, but she is still at the bottom of the hill, possibly still going down, even. Mucositis has set in, still getting worse instead of better. She will no longer consider taking oral medications, or even sip water, but she still sucks her fingers! She has spiked a fever a few times and has been running a constant low grade fever for several days, which is just wearing her out. If she’s not too weak to sit up in the bed she is just mad. She won’t play with toys and refuses to open Christmas presents (I’d rather save them until she feels better!). As long as Josh or I are in bed with her, holding her close, Lucy is ok. It’s not the most comfortable situation, but when Lucy croaks out “I want you snuggle me”, we are more than happy to oblige.
Though we are sad that Lucy feels bad, we have LOTS to be thankful for. Thanks to lots of prayers, here is our good news list … A huge risk during this process is liver damage due to the super high chemotherapy, but so far Lucy’s labs look great. Though her mouth hurts, Lucy hasn’t suffered much vomiting, and we hope this means little nausea too (one benefit to not eating??). Skin breakdown on her bottom was a huge concern (she has suffered bad breakdown several times throughout treatment), but her bottom looks great! Fevers are no fun, and she refuses Tylenol, but so far they haven’t been super high, and it could be a sign of good things working in her body. Lucy may not feel like playing, but so far, Violet still gets to visit and she is happy to help break in a few of the toys/art projects. It’s good for Lucy to see her sister too. Lucy’s hair started falling out in clumps so we asked for some clippers. Instead a kind, generous, barber made a special trip to the hospital, just to cut Lucy’s hair. He was gentle and quiet and worked around her head on Josh’s shoulder and Lucy was still and calm. It was so sweet!
Most of our nurses say day +7 is where kids really feel crummy, so we are keeping our expectations for healing progress low, but still hoping to keep Lucy comfortable. Thank you for your thoughts and prayers, we are ok.
Merry Christmas everyone! While Lucy’s gift of life slooooowly works it’s stem cell magic in her body, we are hanging on for the ride. Lucy’s Christmas present to herself yesterday morning was pulling out her NG tube. She started a continuous narcotic infusion for pain the night before which makes her itchy and she was contestantly rubbing her face and nose; she pulled it out in her sleep. It really was an accident, but I know she was happy to have it out. One nurse even commented “they can be great for the gut but it made her awfully gaggy.” It certainly did. The doctor decided that her mucositis (sores and inflammation throughout the entire GI tract – mouth to anus) is getting too bad to put it back in, so Lucy started IV nutrition. We will miss the ability to give her medications through her tube, but she didn’t really “get used to it”. We were expecting to turn the feeds through her tube completely off or down to a trickle at some point anyway, due to vomiting, so we can be grateful we didn’t have to get to that point. Lucy won’t eat at all or brush her teeth, so we are trying to get her to sip some water to keep her mouth healthy. With open sores in her mouth we try to minimize bacteria. Her little voice is raspy and her breathing sounds a little junky at times so I am bracing myself for the mucus vomiting. It is not uncommon with bad mucositis, and Lucy has suffered through this once before – it was really tough to watch.
Our wonderful nurse on transplant day described this as the cocoon phase, a comforting description, actually. Lucy is grumpy, tired and in pain. It’s so sad to hear her say “I sick. I not feel good” because believe it or not she has never said this before. We are piling on the medications to help her through this part, because it will be days or weeks before she feels better. We are happy to let her sleep and lay in bed all day in her little cocoon while her body works hard to rebuild and recover.
Lucy won’t begin to heal or feel better until she engrafts her new cells. This means her new stem cells settle into her bones, making marrow which will start making blood cells – she needs some white cells to heal! In the meantime, Lucy will also receive several blood product transfusions to sustain her during this cocoon phase. She will get red blood cells today and probably platelets tomorrow. Dr. M is optimistically hopeful that Lucy will engraft around day 10, but cord transplants can engraft later than typical, as long as 30 days, yikes!!!! We are praying for an early engraftment so Lucy can feel better sooner. Let’s go Responder and Super Cells!!
Lucy’s IV pole is working hard under this burden. Josh or I sleep in her bed with her at night so she won’t get too tangled in the big bunch of tubes connected to her.
Our caterpillar’s favorite spot. I am so grateful that Josh can be in KC to help. We are the branch to her little cocoon – she clings to us (by the armpit!) every moment of the day and night. Josh and I are splitting nights at the hospital which is much different than in the past and much better for all of us (except maybe Lucy who just wants mom).
Today was the BIG DAY!! I can’t believe we are here, that it has happened. As Dr. M said, now it’s “off to the races”. We made it through radiation, baths every six hours, yankig on an undressed Hickman line, and some wicked high dose chemotherapy. As expected, Lucy was a star patient through her stem cell infusion today. It was a bit of a surprise that Lucy’s cells were delivered in two syringes instead of two bags to hang and infuse, but it ended up being pretty cool. Science is so amazing today, and we are so dependent on computers and machines that it was incredibly awesome to see Lucy’s doctor push her beautiful new stem cells into her body by hand. The second syringe ended up on the pump, infusing just as easy as a bag would have, but in a bag the option to push by hand would not have been there so it was just so cool!
Many say this day is not really all that exciting, even boring or anticlimactic, but I disagree. I felt excitement, terror, trepidation, elation, sorrow and grief. The last two may not be why you would expect. Yes, Lucy will feel absolutely miserable in the coming weeks, and her life could be at risk, but I was surprised that this did not dominate my mind. I was sad that my baby, who grew in my womb, our flesh, will now be sustained in life by another person’s blood and DNA. It is truly a crazy sci-fi miracle that this is possible and I am 99.99% grateful and happy, but it is a big deal. This is a huge turning point and I’ll never forget this day; we have a new “rebirth” day to celebrate!
The outpouring of love and support has been overwhelming and we are so grateful! In the words of her big sister, whispered from her bed tonight: “Lord make Lucy healthy and no longer ill”. Plus, we would really like to see an early engraftment!! Go Super Cells!!
After two years of on-again-off-again treatment, the one thing that we have managed to avoid for Lucy is the vaunted NG tube. I honestly don’t even know what NG stands for, but you’ll recognize it as the tube you often see sick kids have running through their nose down to their stomach. It’s fairly common as it helps them get nutrition and oral medicine at a time when their stomachs and throats want no part of it.
As you can probably tell by my ominous intro, we finally relented and allowed them to put one in today. The crazy thing is that it’s not exactly needed at this stage. Lucy will always hate oral meds, but she’s still eating well. The doctors in KC feel that getting her NG tube at this stage is preferred because, if you wait too long and the inevitable side effects such as mouth sores or mucositis set in, the option may no longer be on the table.
The process was kind of a microcosm of the whole BMT experience – she was feeling good today, friendly and playing, and we interrupted that by a procedure that led to gagging, vomiting and generally pissing her off for most of the night all for the long term benefit.
It will probably take about 18-24 hours before she’s totally comfortable with it (crossing fingers because she hates it right now), but Kenda and I are confident that we will be thankful we did it when she eventually refuses food and medicine. Not having to worry about whether she got the full dose of oral Tylenol or stressing out about how many calories she had today will be a welcome change.
We’re closing in on 24 hours before her “super cells” are introduced, but surprisingly she is still doing well. Aside from some outbursts and some clinginess to mom, she’s not showing major signs of the looming side effects…yet. We’ve known all along that it will hit her hardest right around transplant day and the weeks following, but it’s still hard to fathom that she’s feeling well after you witness the heavy doses of Cytoxin she’s received that past two days.
Regardless, we’re all just thankful we can go to bed tonight without waking up for the 4:00am bath we had the past three nights.
Radiation is finished and Lucy is halfway finished with the chemotheraoy portion of her preparation for transplant. Two days of chemo down, two more to go. So far, she is feeling quite well. She is halfway agreeable to the baths every six hours, even with the 4:00 am time slot … so far. Sometimes she hates it and cries but sometimes she is having so much fun with her toys she doesn’t want to get out. The good thing is that they are quick baths, not painful, and we know we are doing the best thing for her by bathing her thoroughly. This is a welcome feeling to me, knowing the days of feeling helpless that I know are ahead.
The radiation and wicked high doses of chemotherapy are as intense as it gets, but the effect on Lucy will take a few days. Right now it was predicted thst she would feel well and we are so grateful that she does, because it’s never a guarantee. Her appetite is shrinking but her energy level is not. It is a joy to see her sweet personality and we are grateful that she hasn’t fussed too much yet about not being able to leave the room (she can’t until the bathing period is over because she is literally excreting chemo onto everything she comes in contact with). Violet has been able to visit which puts Lucy in a great mood, and it’s good for Violet too. We are doing what we can to enjoy this calm before the storm.
The countdown to transplant begins with conditioning; these days are counted backwards to day Zero which is transplant day. The sun is officially down on Saturday, day -4, and we are hoping for a few more good days before Lucy starts to feel pretty rotten … though I still hope and pray that Lucy “breezes” right through this! It is possible, and I know if anyone can power through this, our Responder can!
Thanks so much for all the thoughts and prayers and messages of encouragement. Day 2 of radiation and so far day 3 are going very well. Thank God for sedation! Lucy felt a little puky after her second treatment on day 1, as predicted (Dr. M said this seems to be when patients feel the worst) but she bounced back to her normal self by the evening. Her throat was scratchy and eyes red and puffy until the next day but it was from crying, not radiation. One amazing blessing is that Lucy holds no grudges. We expected her to throw a fit as soon as we walked in the doors of the radiation clinic, but she has been totally fine! We took Violet along this morning, because there is just no calming/distracting power stronger than her big sis, seriously, and Lucy told her proudly in the treatment room “look Vi, this is my room!”.
Lucy’s last radiation treatment is this afternoon and we go straight to the hospital to be admitted after. I have a feeling Lucy will be confused and upset but at least she is still feeling very well so I may be able to appease her with candy treats. Tomorrow Lucy begins the chemo we have been dreading. It is excreted though the skin and can cause darkening of the skin or even burns and peeling. The good news is, we can take measures to prevent this. The bad news is these measures include baths every 6 hours and no adhesives on her skin. I’m terrified of Lucy’s new Hickman getting yanked out but this is a common routine for the nurses, thankfully, so I will rely on their expertise. Lucy will not be happy about bathing around the clock or the thoroughness of cleaning that will be necessary. For the two days that she gets this drug and 48 hours after we will have to carefully bathe every crease and nook of her body. That’s 16 baths in 4 days, wish us luck!
Lucy at clinic yesterday. Her happy spirit is contagious. We are amazed at how well she has handled the long days, back and forth. We had to take her to radiation, then clinic (30 min drive), then radiation again the past two days.
Today was Lucy’s first day of radiation treatment. When the big heavy door locked behind me and the “beam on” light went on along with the buzz of the switch being turned, I burst into tears. It was all I could do to keep from busting through the doors and throwing my body over my baby. Well, perhaps I sent her some kind of subliminal message, because what started out peaceful and calm turned out to be a pretty terrible day.
As I mentioned we were going to try unsedated radiation. Lucy had a DVD player and a new movie and was quite agreeable to everything going on this morning. But after several moments when she realize she was all alone in the big dark room with a freaky machine pointed at her, it all came crashing down. She was crying, begging, for mom or dad to stay with her. We let her have a sucker, movie, iPad, we tried FaceTime, talking to her on the intercom, promising her a cookies, candy, a new car … but she was inconsolable. We left the morning treatment defeated and exhausted. We were told sedation wasn’t available for the afternoon session, or tomorrow. It was so hard to bring her back this afternoon. She was all too wise to our false promises and lies (we tried to tell he were in the room with her that she just couldn’t see us) and despite a dose of sedative meds she was hysterical immediately. The only solution was the papoose, which is a little backboard for babies/kids with Velcro wings for full restraint from head to ankle. Lucy cried and screamed for every second of treatment. We could hear and see her and talk to her, but she was inconsolable. It was a rough, sad day. Someone must have pulled some strings because, thank God, sedation is available for tomorrow. Good thing, because I’m not sure I could make myself to take my baby to that again, seriously.
A screen shot of our failed attempt at FaceTime. Lucy was practically climbing on top of Josh when he went in to console her. She doesn’t have to stay completley still, but she was pulling out of the straps and turning around in her seat. We had to stop every few minutes to reposition and attempt to calm her. It is a 20 minute procedure thst took us almost 2 hours.
Lucy and I had a very busy trip to KC this week. We arrived Monday evening, had three long days of testing, then rushed back on Thursday for Violet’s Christmas concert and a few more precious nights in our own beds. These tests were not only to make sure that Lucy ‘s body is healthy enough for transplant but also a baseline for when/if she suffers damage to her body from transplant. Lucy had a kidney function test, X-rays, hearing test, EKG, echo cardio graham, BMA/LP procedure and several awkward measurements and trial run for her radiation treatment. The tests were long and boring and she was NPO two of the days but our Responder handled it all LIKE A BOSS! This girl didn’t even cry when she got an IV! There was a tiny bit of whining here and there and a trembly lip during a scan but she never cried in fear or had a meltdown. I’m so darn proud of this girl and hopeful it is a sign of things to come.
Lucy and I will head back to KC on Sunday, with Josh and Violet hopefully just a day or two behind for the begining of the transplant process. Monday Lucy will have surgery to place her central lines – yes, plural. She will get her third double lumen Hickman Broviac and a new (to her) piece of hardware, a port a cath (port) placed under the skin. Her chest will be crowded! The port is exciting because it is under her skin so she can bathe regularly and there is no home maintenance – flushing, dressing change. The Broviac is our old cumbersome friend who we love and hate. I would have to say the only upside is no poke to access. We are really grateful that KC will put in both, though, because they will pull the broviac as soon as possible (it is necessary during transplant), hopefully before we head back to St. Louis.
Tuesday Lucy will begin TBI, or total body irradiation. We will attempt to do this outpatient, as long as Lucy can handle it, meaning no extreme vomiting/nausea, which is unfortunately a possible side effect. She will get radiation twice a day for three days with a visit to clinic in between so the team can keep an eye on her.
For these first few days of her journey I have a few prayer requests. First, for Lucy to accept her new central lines with ease. She may be very upset to see her big double chest “tubies” again. Or she may shrug and roll with it. She really doesn’t know much different than this life; I’m pretty sure she could take her own vitals! Second, for six peaceful radiation treatments for Lucy. With few exceptions, kids Lucy’s age are sedated for the 30 minute painless procedure so they won’t move. Lucy is the exception thanks to the awesome Dr. M. Sedation 2x a day was weighing heavy on our minds. We would have to deny her food and drink all but a few hours of the day. We are grateful for every ounce on her body, we don’t want her to lose weight right away! Dr. M is especially worried about the possibility of intubation during a sedation this long, which could cause trauma to an area that will be hit hard during this process (mucositis). Lucy will have to sit alone, strapped to a table, keeping relatively still for 30 minutes. I pray she can do this so she can avoid sedation.
The original plan has been pushed back just a bit, but it was a best case scenario, and a bit optimistic so we are ok with this. We are dreading this transplant, but also can’t wait to get going with this transplant! We have an official schedule now, so we can plan the next few weeks. Lucy will begin her evaluation (tons of testing) in KC next week, then conditioning the following week, putting transplant day or “Day zero” on December 23.
An extra week at home to enjoy our “normal” life is not a bad thing, and actually neither is Christmas in the hospital. Josh and I often remind ourselves how lucky and grateful we are to even be in this place at all, when it comes to cancer treatment. Twice now we have been blindsided by the Beast and watched in horror as Lucy started a lengthy treatment after what we thought would be a short trip to the hospital. Imagine walking in with the clothes on your back and finding out you have to stay for at least a month. Getting to “plan” a treatment process feels like a luxury, really!
Lucy started her pre-transplant testing in St. Louis with her first dental appointment, where she was a total rockstsar. She is so big and so brave! We still go to clinic every week for labs and a dressing change on her PICC line from our extremely generous nurse Brittanie. We should probably change the dressing ourselves at home but I’m too nervous after watching professionals pull it out by accident – twice! Besides, it’s an excuse to see our friends at Glennon.