What a glorious day at the Bacott house – Lucy slept through the night, for NINE hours straight! It’s definitely the first time since her diagnosis, possible ever, that she has slept this long consecutively. The uninterrupted sleep was a pleasant surprise for Josh and me, but was even better for Lucy. She was in a great mood all day, playful and energetic, and her appetite was amazing! All this coming off a “not completely horrible” steroid week has us all feeling refreshed.
Last night Lucy started what will be three weeks of oral chemo and a weekly dose by IV, which she usually tolerates well. Or so we thought. These last few days Lucy’s appetite has been quite impressive; she has not had chemo in weeks and has been off steroids for days. Is this the real Lucy? By the third week of 6mp (oral chemo) and methotrexate (weekly IV) Lucy starts to have a lot of trouble sleeping, but her appetite has never been this strong so we shall see what happens. Our hope is that she continues to eat well which might even make her sleep better.
As we mentioned several weeks ago, Lucy is finished with all inpatient treatments, AKA “big chemo”, and finally we see the later effects. It took several weeks but Lucy officially has super shiny bald head. The exciting part is that as it starts to grow back this time, it will be for good!
Showing off her fork skills. She is turning into a camera ham just like her big sis!
P.S. Mom, I have added some videos to our YouTube page. Some hilarious antics of these two sisters in action, including a delightful (loud) serenade by Violet featuring Lucy on drums. Search for user jbacott.
We are HOME, and have been for about a week now. I think I caused some confusion when I posted the picture below of Josh and Lucy on Facebook, sorry! I posted it on Sunday, Father’s Day, because Josh is truly SuperDad, and Lucy was dressed the part … but don’t worry, this is from several weeks ago during Lucy’s stay for chemotherapy. You can check out a short video here of the little caped crusader in action.
This last round of chemo hit Lucy much harder than usual. And by this I mean that it actually affected her. Cytoxan chemotherapy typically makes older kids quick sick, but luckily Lucy (and other young babies apparently) usually handles it well. We are so glad this is the last round of it, because Lucy has not been herself. She has needed every bit of this two week break to get back to normal. Her appetite was just gone for several days and she lost a bit of weight, which has us stressed about her eating again. She also started screaming when we put her in or even near her highchair, so we have had to get creative to get her to eat. It’s kind of hard to tell the three year old that she has to sit at the table and at least try a bite of dinner before she can ask for a snack fifteen times when we are literally chasing Lucy with a spoon and bowl of peanut butter oatmeal while she plays with toys and sucks ketchup off the same French fry over and over. But pepper the dog loves this game!
Thankfully, Lucy is slowly coming around and eating a bit more. She must have just been feeling pretty crappy because she was kind of a bear for a while too. Now that she has finally settled back to “normal” a bit, we are going to enjoy the next few days before … STEROIDS begin on Thursday. We are looking on the bright side, we could use a week of hungry Lucy to get the weight back on!
Summertime is for tank tops (or central line protector vests) and pearls!
Lucy is back at the hospital. Unfortunately (but predictably) it was our stay at home that was short. Lucy started running a low grade fever in the wee morning hours Saturday and finally spiked around 6 pm. We had to go to the ER, and I suppose I will blame the poor timing (weekend, shift change) for our long, long visit there. Lucy was neutropenic so I knew we were going to be admitted, and so did our doctor on call, still it took 4.5 hours to get to our room. Lucy and I were both exhausted. Lucy’s counts were bottoming out from the chemo, and her hemoglobin was extremely low, so she got blood immediately at 1:00 am. It was a very long night.
Good news, her blood cultures are negative and it has been over 24 hours, and no fever in that time either. Her white blood cell count is creeping up, slowly. We need that immune system to show up so we can go home and stop giving Lucy neupogen which makes her uncomfortable. It is Monday morning as I write this and I really, really hope we can go home today … but I don’t want to get my hopes up!
To add insult to injury Lucy has some big molars coming in right now, which is probably contributing to her refusal to eat solids. Lucy has been uncharacteristically cranky and short-tempered, and though I can’t say exactly why, I’m pretty sure it is due to being exhausted, bored, frustrated, uncomfortable and having some teething pain. Really hoping she will be herself again soon!
Update: we will not be going home today, Lucy’s ANC is only 98
Dads to the rescue!! On Sunday morning pops picked up Violet at 6:00 am so josh could come to the hospital and help me – I was desperate!
Lucy has terrible timing with unplanned hospital visits. We are so disappointed that she could not attend the race on Sunday that the LLS Moms In Training team ran. We are so grateful to these moms, they have worked so hard and collectively raised over $10,000 for the LLS – amazing!! Lucy is so lucky to be their honored hero and honorary team member!
Lucy has finished four days of chemo, and has just one more to go! It will be a long day tomorrow, but the nights here are very long, especially when Lucy only sleeps for a few hours. I don’t care if we get home at midnight tomorrow, I miss my bed, and clearly “insomnia” Lucy misses hers too.
So far Lucy has been feeling great. She is eating well, and is very, very active. As I anticipated, this had been a very challenging stay because Lucy wants so badly to run and play. It is very hard to live in a single room for five days with an extremely active one year old. But I am SO grateful that she feels so good while she gets chemo! The only hiccup has been the earlier mentioned lack of sleep … I think we are both a little delirious at this point. Every day for five days Lucy gets chemo one, then chemo two, followed by a drug to protect her bladder from chemo two. This all takes about eight hours. Lucy just could not sleep the first few nights, crying and rolling around every time I put her in the crib (about 6 times) and only settled after the last drug was finished. I think that the side effect of bad mouth taste during infusion of the last drug was the culprit. I noticed right away that her breath smelled weird so I can only imagine what it tasted like! This side effect appeared to just really piss her off. That sums up this feisty girl – she gets MAD when things don’t go her way! Every day they can start chemo two hours earlier in order for us to be able to leave on Monday so that has helped a lot – instead of ending at 1:30 am this nasty tasting stuff was over by 8:30 pm this evening and Lucy was able to get to sleep.
Most if the time, Lucy has been literally running the halls and dominating the playroom. Although this is our LAST inpatient chemo treatment there have been many firsts as well.