We haven’t postedin a while, which in this case, is because Lucy is doing great! Although finger foods still don’t interest her much, her appetite has been much better. This could be due to the fact that we have switched her dose of oral chemo to night time instead of first thing in the morning. Josh handles this task in a unique way. This medication must be taken on an empty stomach and is most effective when given at night. Since Lucy still nurses at bedtime and through the night this posed a challenge. So I nurse her to sleep and Josh stays up until 2 hours have passed, sneaks into her room with a flashlight, squirts chemo in her mouth (prays she doesn’t wake up), and sneaks away. If she wakes up he has to console her for an hour before I can nurse her – this is how we do the empty stomach rule. Infants with cancer require some creative solutions!
The biggest news we have to report is that Lucy has been taking a few steps all on her own and drinking COW’S milk from a straw! She is also learning to write her name. Just kidding … but she pretty much wants to do everything her sister does, which recently includes imitating her drawing and coloring. Although she can walk on her own, she still prefers to push things around, including a chair while her sister is in it! She is strong! Her progress with drinking from a cup is exciting, but she’s not giving up breast feeding either. But that’s ok because neither am I; it’s so beneficial to her.
Lucy’s physical progress while enduring intense chemo for these past 8 months, particularly during a time of rapid growth and development is astounding. And we can not take any of the credit; it is 100% Lucy. We see other kids in her situation falling behind in development, dedicated parents taking their children to physical therapy, and parents of older kids pushing their formerly athletic child in a wheelchair… this is not the exception; Lucy is! Shakespeare’s quote “and though she be but little she is fierce” couldn’t be more fitting for our little Responder, and we thank God for the blessings he has bestowed upon her in this journey. A few weeks ago I had a wonderful reminder of the love and prayers Lucy receives every day. Our dear friend Abby from 4 north left a beautiful card signed by her classmates for Lucy letting us know that they are praying for her. It was so touching to think that even as we begin to feel a little closer to “normal” at the Bacott house, friends are still praying for Lucy. And we are so grateful, because we still have a ways to go; but we savor these good days!
Family is what makes holidays special, but becoming a parent has made each occasional special in a new way. As our girls get older we are excited to make our own traditions and memories. Easter will always be “Lucy’s” holiday because she was born on Easter morning! I know it’s not Thursday, but we’re gonna throw back anyway …. Happy Easter everyone!
We had a long day at Cardinal Glennon on Thursday, but Lucy was smiling and happy for most of it. One small victory – no vomiting during her monthly antibiotic. She gets this by IV and the run time was doubled to two hours to prevent it from upsetting her belly. I also refrained from nursing her during the infusion, and she didn’t like that part, but she didn’t throw up! Her chemo infusion also went well, with no problems. Lucy is growing so fast – she likes to play in the playroom now, like the big kids!
Lucy also had an appointment with occupational therapy to address her issues with eating, and she wasn’t very happy about it! This is probably the only area where she is a bit behind – she doesn’t eat much in the way of finger foods. She can pick up the smallest speck of dust and is also very good at putting anything and everything in her mouth … besides food. She also doesn’t drink from a cup. If someone would have told me a year ago that after her first birthday I would still be nursing Lucy several times a day and that she would not be using a bottle, cup, or anything else, I would not have believed it! But this is the situation we find ourselves in. Because her weight is a very serious issue, we give Lucy what she wants when she wants it, which happens to be lots of breastfeeding and mostly purees and soft foods like yogurt and applesauce. Lucy was NOT happy with her therapy session where she cried and tried to crawl out if the high chair when presented with a mountain of food. I am certainly willing to breastfed her as long as she need/wants because I believe it is best for her, but we will also continue to work with her at home to encourage finger foods. WITHOUT forcing her or withholding breast feeding. I have to believe that she will get there in her own time. She is kind of under a microscope because she has cancer. But like with any child, I think we need to pick our battles. One would think a kid with this many teeth would me a master at chewing!
On Friday I was thrilled to get Lucy back to see our chiropractor. We haven’t seen Dr. K since before Lucy was diagnosed. Our wonderful oncologists are very supportive of this kind of therapy for Lucy. And Lucy did great! This weekend we have been trying to get outside and enjoy this eagerly anticipated warm weather. Yesterday Violet, Lucy and the “bubble stroller” and I walked to the library. This morning we all went to Des Pere park to meet the Moms in Training for which The Leukemia and Lymphoma society has named Lucy their honored hero.
What a weekend!! The We Love Lucy Triva Night was a smashing success and deserves a blog entry all it’s own. To all our wonderful supporters – please read here. The turnout was so amazing, now I’m feeling a little self conscious as I write this post! I know there is a way to track how many people read this site, but I don’t know how to do that and honestly have no idea how many visits (or whatever you call it) inspiredbylucy gets. But after last night, I know for sure it’s more than I thought! We appreciate everyone who follows Lucy’s journey, every thought and prayer has made a difference!
This week Josh and I continue to muddle through these last few days of ‘roid rage Lucy. We have heard that each round can be very different, and this week we are paying for the relatively reasonable round last month. Lucy’s mommy attachment is excessive, she is sleeping very little (and at all the wrong times), and her mood is volatile to put it mildly. The one silver lining is that her appetite has been huge. Steroid week is our best chance to help Lucy catch up in the weight department. Today (Monday) is her last day of steroids, so we are hoping to get our sweet playful girl back very soon!
We head to clinic on Thursday for chemo and Lucy will start the daily chemo that she takes orally at home. She also has an appointment with speech/occupational therapy. Lucy has no particular issues to deal with right now, Dr. B just wants to make sure she doesn’t fall behind. Chemotherapy is hard on a body, especially a little developing body, and Lucy has had an incredibly aggressive amount of it.
I will end this post with a series of photos I call “thirty seconds with steroids”. Poor Lulu doesn’t know what to do with herself!
It was a long day at clinic yesterday. Lucy did pretty well with the new sedation for her LP. She wasn’t nearly as fussy immediately coming of sedation, but had kind of a rough rest of the day. This was also the beginning of steroid week so some fussiness could be blamed on that as well. I got Lucy up at 4:30 AM for her last feeding before her procedure and started steroids then too, so it’s no wonder she was cranky and mad when she woke up, she was hungry! The best way to describe the effect steroids has on Lucy is to say she has a very short temper. She knows what she wants and she won’t take no for an answer without a fight/fuss. Now that Lucy is getting bigger and stronger I think we may see some major temper tantrums in future steroid weeks, yikes! This is the reason for our board tally of steroid doses, we literally cross off each one.
Her general fussiness could certainly be attributed to sedation, no nap, and lots of chemo on Thursday but unfortunately Lucy’s elevated temperature later in the evening could not be ignored. Of course, Lucy’s symptoms began at bed time and Costas was closed so I had to take Lucy to the ER. We got off lucky this time. Although Lucy’s temperature hovered just above 100 degrees, she never “officially” spiked a fever. She was given a dose of antibiotics just in case but since she was not neutropenic we got to go home!
We are hoping and praying that Lucy stays well, always, but especially this weekend because it’s a big one. Tomorrow is the We Love Lucy Trivia Night, and we can’t wait! Lucy’s appearance is still in question, but if if she does make it to the event, we will still be hard pressed to describe to Lucy when she gets older how loved she is. So many dear friends have worked so hard on this event – we are overwhelmed, and it hadn’t even begun yet!
Our little Responder has done it again. After a pitiful ANC of 100 on Tuesday, labs on Thursday showed that her ANC soared to over 3,000. Dr. B asked us to give her her one last dose of neupogen that night, sort of “a pinch to grow on”, presumably because there is usually an equally steep drop after she comes off neupogen, and she will need to make counts to start chemo again this week.
Thursday Lucy will get an LP and chemo push as well as start the dreaded steroid week. She has had trouble with sedation during the LP, and last month’s experiment with versed and morphine wasn’t much of an improvement, so this time she will get a different sedation drug which requires a trip to same day surgery. It is still a quick procedure, but this deeper sedation can’t be done in the clinic. Hopefully we have found the right method for Lucy since this is a monthly procedure. We will go to clinic Wednesday for counts to make sure she can start treatment.
Before Lucy got sick we were given an appetite stimulant to help her gain some weight. We held off while she was in the hospital with fevers. I tried a dose after we got back home last week and it wasn’t pretty! I’ve been told the effect is cumulative and it may take a few days to see results. After a single dose (she is supposed to take it 3x day!) we didn’t see much if an increase in appetite but the mood alteration was immediate! It is an antihistamine so I expected some drowsiness but the crankiness was profound! Lucy was NOT herself; crying all day and not playing at all – it was a rough day. For now, I hope she can keep her appetite up on her own and we can push this medication to the back of the shelf! Overall, however, it has been a great break from chemo and we will enjoy it through Wednesday!
An update on Lucy’s hair – there is evidence that we will be seeing her beautiful bald head again, soon. Papa’s new chemo will take his hair as well, so maybe matching hats? Lucy could care less about her hair, as long as she can enjoy her two favorite things – wrestling her sister and eating cheezits.
Lucy’s white blood cell count crept up a tiny bit yesterday, luckily it was enough for Dr. H to send us packing! I know he wished he could have let her go home on her birthday; we are just grateful that he trusts us enough to let her go home yesterday. Her ANC is still very low so every night we will give Lucy neupogen by IV at home to kickstart her bone marrow. Her hemoglobin had dropped pretty low, so she got some blood and we were home by lunchtime.
Spending Lucy’s first birthday at Cardinal Glennon was a reminder to us of how lucky we are to call it “our” Hospital Sweet Hospital. Lucy was showered with gifts, balloons and a cake from her nurses and doctors. Lucy was treated to a Happy Birthday serenade from a roomful of caregivers who adore her. It was humbling to see how many people spend their time and energy caring for our little responder; it is clearly quite more than just a job.
Lucy has an appointment at Clinic tomorrow for counts only; this is another “rest” week. Hopefully it will be a very short trip; she shouldn’t need any transfusions, and NO chemo this week! We really hope her counts are high enough to stop neupogen soon – it appears to be making her uncomfortable. We would love to enjoy this last rest week with no meds making her feel bad.
We have finally gotten used to seeing her with hair, and now we must wait to see if we will have to part with it again. Hair loss is a side effect of the chemo she got a week ago, but not always. So will it fall out or won’t it? Stay tuned …