Yesterday was a roller coaster of a day, but I am thrilled to report that it ended well. Thank you, thank you for all the prayers.
Lucy finally woke up without crying for the first time in days. I was so happy. Then she asked for a snack. Also exciting but … unfortunately she could not eat or drink prior to her 1:00 procedure. The first time in 6 days that she wants to eat and we had to deny her. Ugh! So she was really mad and fussy, but thankfully the procedure went well. At the time of her relapse diagnosis we found out that there was NO leukemia in her spinal fluid, so after this LP with chemo she gets a break from LPs for at least a few weeks.
After a little fussing Lucy perked up and finally, big sister Violet came to visit. It did both girls a lot of good to be together, and hearing both of them laugh was beyond incredible. I guess the misery of the previous days helped us to appreciate this small thing. Eventually it was time to go. Lucy was really sad to see Daddy, Vi and Grandma leave, and Violet was equally upset that Lucy and I were staying here. I know the girls will adjust. One day at a time.
Lucy’s appetite is back big time, but I still have to ease her into eating because her stomach isn’t quite ready yet. I gave into the begging for milk and several bites of my bacon egg sandwich this morning and it all came back up. Oops. We are pushing to get her completely off the morphine drip in case this is contributing to the vomit, which is likely. Hopefully today or tomorrow. Lucy will get chemo today, vincristine. It’s a quick push but packs a punch in the jaw – literally. This one causes Lucy jaw pain so we will try to stay on top of it. During treatment she got this chemo monthly but now weekly, so we are praying she doesn’t get too uncomfortable.
Lucy is up! Finally sitting up at the table I rushed out to buy, playing with grandma.
The giggle sisters are back! We had to remind Violet a few times that Lucy has “lines” (broviac) again and this time they are actually hooked up to real IV lines. When Lucy is 100% we will struggle to remind her too! But this is a happy worry.
Not a whole lot of change with Lucy, unfortunately. She is still tired, pukey and very moody. I guess a small improvement is that her long crying fits are under better control, and she is nibbling some food a few times a day. She definitely still wants to be held or carried all the time, but thanks to a borrowed baby carrier maybe I can still walk away from this experience in one piece!
I just can’t say enough about the nurses and doctors here at Cardinal Glennon. They are bending over backwards to make Lucy as comfortable as possible. If I need to go to the bathroom they eagerly hold out their arms for Lucy, even though she cries the whole time! They are like stealth ninjas during the night, getting things done and not waking Lucy, and they watch over our little responder like the hounds of hell when Lucy has finally fallen asleep for a nap.
Tomorrow Lucy will have a lumbar puncture with chemo and hopefully more recovery from chemo, steroids, and a possible virus. I also noticed that she has at least one molar coming in. Violet has recovered from the stomach bug, and we thank God for her awesome preschool because she needs some normalcy so bad. She is really emotional and cries often because she is missing someone – Lucy, Mom, Dad. She desperately wants us all in one place, for more than a few hours. Just over a week ago we were taking the girls swimming, to the zoo, and watching these sisters giggle through bathtub tea parties together, and now, this again. I’m not sure it has really sunk in yet. Instead of looking back we decided we need to look forward. This has led me to declare that when Lucy gets well, we are going to Disneyworld! We will meet every princess, dress up, have fancy tea parties, stay up late and play all day until we collapse.
Some happy news xtoday – Jennie drove from KC for the day to love on the Bacotts and she brought an awesome gift – grandma!! Violet needs her her KC BFF right now so bad. Weekends are especially hard as she gets shuffled around. Thanks to everyone for all the love and support.
Looking a little rough, but this is a big deal. Lucy sat by herself and nibbled some Cheerios. You can see the self inflicted scratch on her face.
We’ve gone from bad to worse. After the pukey day, Lucy cried nonstop, all day long on Monday. She was absolutely inconsolable, no matter what we did or what meds we gave her. And we tried a lot. She was raging so bad she was hurting herself, scratching her face, kicking her legs. The whole team came rushing to our aid and decided to put her on a morphine PCA. It’s a continuous drip with a button for extra doses. She finally stopped crying but continued to be clingy, mopey and pukey.
Last night she finally ate something for the first time in days, I was so glad. This morning she also ate breakfast, then threw it all up. Same with lunch. The steroids could be the culprit, or a bug going around …. That’s the other thing.
Yesterday Josh got sick so he couldn’t come to the hospital. It’s a good thing we kept Violet a away too because she got sick today. It’s seems a 24 hour stomach bug is going around. By the grace and mercy of God, I am not sick. I’m so glad I am here to comfort Lucy, but it has been hard. She will not let me put her down, I mean ever. For the past three days and two nights she has walked, snuggled and slept with me. I will do anything for her comfort, I just hope she feels better soon. She isn’t getting worse, but we seem to be stuck at the bottom of the hill. Praying for the upswing really soon.
Well day one of treatment started off rough. Lucy started vomiting in the evening and hasn’t stopped. She is getting another infusion of this nasty chemo right now, thank God the last of this one. Good riddance mitoxantrone. She is totally miserable and it is heartbreaking to watch another dose go into her body. It is just so disappointing to start off so badly, we are praying for some relief in the next few days, and that will also bring back her appetite. We are not even trying to make her eat during this storm, but we can’t afford to fall behind.
The good news is, Lucy is responding well to the treatment so far in the way that matters. Her white blood cell count has gone down significantly which is the goal right now. She is still being closely monitored because as the bad cells are destroyed so rapidly it could cause problems in her body. So far nothing too major.
Although we are taking this one step at a time, relapse protocol is for Lucy to have a bone marrow transplant. Siblings typically make the best donors, but unfortunately Violet is not a match. The search for Lucy’s match is nation wide, and I encourage everyone to register. Even if you aren’t Lucy’s match you could save a life. Go to bethematch.org for all the info. They will send you a kit and the test is a very simple mouth swab. Please refer to the website for donor eligibility.
Lucy is finally in surgery after a long, long day. Lucy needs a new broviac placed for treatment and will get a bone marrow aspirate and lumbar puncture with chemo as well. Lucy was an add on to surgery today and has been NPO (no food or drink) since midnight on the off chance there was a cancelation somewhere in the day. This did not happen, she finally went back to surgery at 4:15 pm. In addition to no food or drink she had an extra needle stick for blood draw and three attempts at ultrasound, only one successful because she was so upset. She has been fairly patient and at times even playful for someone who has been denied food and drink all day, but it was not an easy day.
Even knowing all that we do and after all we have been through it is back to one day at a time. This is new territory. Lucy is not a baby who stays in the crib all day anymore. She is active, with attitude! She knows that this place is not familiar and is breaking our hearts by repeatedly asking to go home. Violet is also older and wiser and she knows exactly what is happening to Lucy, and she is worried. Unfortunately we know Lucy won’t get to see home for at least four weeks. We will not be holding back this time around when it comes to making ourselves comfortable on 4 North.
Lucy will start steroids today and chemo begins tomorrow. The first phase of treatment, induction, is very similar to the beginning of Lucy’s treatment the first time around. Her response after these four weeks will tell us how to move forward. The best case scenario is that our little Responder shows her fighting spirit and goes into a fast and complete remission at the end of these four weeks. We are begging, pleading and praying for this – it is a very big deal. Dr. B and all our friends here are absolutely as devastated as we are by this news, and will move heaven and earth for the best treatment for Lucy. We feel so lucky to have them all here with us, and If there is any positive in this it is that we are back home, at Cardinal Glennon. Being silly with daddy before surgery. Getting creative with her shirt because of that pesky IV.
I never wanted to write this post, but here it is. During a routine visit to clinic today we found out that Lucy has relapsed. She had absolutely zero symptoms and has been her happy, energetic self. Now she will begin treatment to make her feel awful agin to beat this horrible cancer again. We are back at Cardinal Glennon tonight and for a long while. It all happens fast from here, more news to come as we figure it all out. We would be grateful for your prayers, this was a tough pill to swallow today.