Since we will be enjoying every minute of our time not only at HOME but with a happy, almost med-free Lucy this weekend, it is a double post today. we will be having way too much fun over the next few days to stop and post! Just wanted to share what we have been doing all week …
Lucy can’t get enough if her sister!
Violet enjoying her free cookie at the grocery store with mom
Lucy getting some PT time on the floor in her room. We missed carpet on the floor!
Lucy may have missed out on a Cardinals World Series win, but our friends represented her at the game!
On halloween – Princess Violet thrilled to share her title with mini princess Lucy
Lucy and I made it through the rain this morning to our appointment at The Costas Center. It’s quite a difference experience to walk through the doors of Cardinal Glennon and know that we are coming home the same day! I almost forgot to pack a diaper bag for Lucy, it seems like so long ago that we lived our “normal” life. Soon the Costas Center will be our “home away from home”, so this will be routine.
Today we came in for blood work to check Lucy’s levels. She has been on neupogen for 8 of her prescribed 7 to 10 day regimen to stimulate her bone marrow to produce healthy withe blood cells. Our doctors estimated that Lucy would probably need the full 10 days, so we were pleasantly surprised to find her white blood cells are up to 23! This is quite an amazing increase from 0.3 on Monday. Her ANC is 15,000 which is awesome. It was also pitifully low on Monday at 30. Anything over 1,500 is good for Lucy. This excellent recovery means several things. First, we no longer have to give Lucy neupogen by IV every night. Thank goodness! Ask a baby to be calm and still for 20 minutes in the evening, and baby will choose those 20 minutes to melt down. Second, she is healthy enough for surgery on Monday to put in her Broviac line and start her next phase of treatment. For all those prayers for Lucy to be a responder, thank you! At the beginning of our appointment Dr. B was telling me we would need to come back tomorrow for more labs, and probably re-schedule surgery or push back her next treatment at least, and within minutes the results were in and I was talking to the surgery nurse on the phone about Lucy’s appointment on Monday. I quote Dr. B – Lucy is “a rockstar!” We like these surprises from our one of a kind little lady.
Our visit today has also been extended through most of the afternoon while Lucy gets IVIG (intravenous immune globulin). It is a solution of concentrated antibodies to boost her immune system. After violet’s cold, I say bring it on! We should be home in time for trick or treating with Dr. princess Violet tonight, but since she can’t go along door to door, Lucy donned her costume again today.
Princess Lucy “the responder” catches up on her beauty rest in clinic today
Violet got a dress down day at school for Halloween. There will be a costume change later and Dr. violet will get to march through school in a parade to collect candy for her parents, um, I mean for herself . . .
Greetings from O’Fallon, MO. With Lucy and mom hanging out at home during their only two week break from the hospital, we of course had Violet pick up a cold complete with coughing and sneezing that has driven us into seclusion at Grandma and Grandpa’s house. The first time since August that we get an extended stay together and it is rudely interrupted by an infestation of germs that Lucy’s body has no defense against.
The good news is that Lucy seems unaffected by the cold at this point. Her counts are still very low, but we’re expecting her nightly dose of neupogen to bump that up the same way it did the last time she took it in the hospital. Mom reports that she was a bit fussy last night for any number of reasons including what could be some discomfort after receiving her first flu shot at the Costas Center yesterday morning.
Meanwhile Violet has escaped any signs of this bug escalating into a fever, but is still hacking and dealing with a stuffy nose, enough to keep her home from school. She’s doing about as good a job as one could expect from a three year old when it comes to covering her mouth when she sneezes or coughs, but those dastardly germs are too big of a threat to Lucy for them to spend much time together at this point. If only they sold those hazardous material suits in infant sizes. Violet’s reward is watching far too much TV at Maw-Maw and Pops’ house while her dad huddles over his work laptop in the next room.
But at least we got to spend a few days with the entire family together – and when we say entire family, it means even Pepper got to come home for a week. We’re still not sure if Pepper is happy about this or bitter that she’s back at the house where she serves as a mobile play-thing for the two little people who reside there…
As we had hoped for, Lucy was given the full clearance to head home on Wednesday night so the family has been reunited in South City for the past two nights and hopefully will be through the end of the month.
We were all able to sit down and enjoy the World Series games as a family last night and by “sit down and enjoy” I mean “set up and run an IV pump for Lucy’s medication and try to keep Violet from melting down before bedtime while peaking at the score out of the corner of our eye.” All things considered, it’s much better than the alternative of more nights in the hospital.
On the outside, Lucy has been happy as can be and, despite some restlessness getting used to her new/old bed, it’s sort of like the normal we knew before August 27th. Meanwhile on the inside, we’re hoping that Lucy’s body is busy cranking out what amounts to a whole new immune system with the support of the drugs we’re giving her every night through her fancy home-IV kit.
When we get back to the hospital in early November (fingers crossed it’s not before that), she is scheduled to go into surgery and replace the Picc line with a more long-term alternative called a Broviac line. And once that’s in place, we start over with the Induction phase with the intent to wipe out the new immune system that she spent two weeks building. Let’s just say we’re confident that the doctor’s know what they’re doing.
Knowing we were leaving the hospital and not coming back until after Halloween, both the girls debuted their costumes a few days early for the nurses to see:
Since we have been lax on the postings lately, we are catching up with a double today.
Thanks to Aunt Lezlie, the Leukemia & Lymphoma Society has named Lucy their honored hero for the fall 2013 Moms in Training. Not only is this a great honor for Lucy but it is a great opportunity for us to get to know this organization. We haven’t looked much beyond these hospital walls for resources, so we look forward to getting to know our new friends.
As my friend Jennie told me (I’m quoting her a LOT – watch what you say Jennie!) during this tough time, we will be amazed by the good in people. Boy was she right! So many people have come to our aid. We are shocked and humbled to receive so many anonymous gifts and words of encouragement from Violet’s school, on this site, and on our doorstep! Our friends and family are also supporting our entire family just as aggressively as Lucy is fighting this cancer. The events planned in Lucy’s honor has blown us away. More details on each event to come.
Lucy is a hero to us all, but it has been pretty awesome watching her inspire so many heroes in our lives. I guess Josh picked a pretty good catch phrase … I’m only gonna do this once …. #inspiredbylucy
Given the unusual way this whole adventure unfolded, it’s been tough to wrap your head around the idea that our six-month old daughter would be going through some major developmental milestones while stuck in a hospital room. But over the past few weeks – heck, even days – we’ve started to see her make some serious strides.
Lucy’s two teeth on the bottom have been joined by four new ones that have popped up recently. We’re pretty sure that if you did a time lapse video over just a few hours this weekend you could watch them breaking through. Those puppies are moving fast.
She’s recently unveiled an entirely new vocabulary that, at times, could be confused with real words, but is mostly creative gibberish. We’ve introduced her to the world of non-breast milk food which she has taken a liking to – such delicacies as avocado, sweet potatoes, mashed peas and butternut squash. And of course, we’ve also experienced the side effects of her new diet, most notably diapers that are much more “fragrant”.
It honestly seems like this all happened over the weekend. A few of the nurses confirmed the same which at least made mom and I confident that we weren’t imagining things.
At this pace, she should be jogging around the hospital in a few weeks. We’ll keep everyone posted.
As for the treatment, she is going into day four of this five day stretch of Cytoxin and another chemo I can’t remember the name of. She is handling it extremely well with the only hiccups being external issues, most notably a concern about her Pic lines not being able to draw blood. There is some concern over whether they are positioned correctly if the nurses are unable to draw from them, but after an x-ray yesterday, Dr. Ferguson said it looked like it was still in a good spot to deliver the chemo so it was full steam ahead.
She is on track to finish up this round tomorrow and enter into a “count recovery” period which, barring any last minute changes, will probably take place at home and could – could – last for up to 7 or 8 days. As we have been since this all started, Kenda and I aren’t packing up our things just yet, instead we’ll take it day-by-day.
As for Violet – she scored a gift card to Toys R Us for her birthday and enjoyed her first trip there on Sunday. Let’s just say she was pleasantly overwhelmed…
After a full week with Methotrexate swirling around in her system, we received the green light to spend roughly 36 hours back at home with Lucy. Her blood level finally dropped below the target of .05 this afternoon and she was brought home by mom around 5:00.
The original plan had her going back in to the Costas Center (the outpatient cancer clinic at Cardinal Glennon) tomorrow at 10:00am to get a reading on her Methotrexate level as she was still slightly higher than we had hoped at her morning blood test. But mom pushed to have them take another draw at 3:00 today, they agreed and the number came back at .04 – and just like that we got a hall pass until Friday morning.
Now, we do have to lug around a backpack filled with fluid that is connected to Lucy’s arm, but we can take that off tomorrow and then we’re off to galavant around the city, taking our girls to exciting places like the zoo, the mall, maybe going up in the Arch…Well, now that I think about it, since she has no immune system, our day will likely consist of barricading ourself in the house, but still pretty awesome.
We head back in on Friday morning to start a five day stretch of chemo, so we’ll make sure we enjoy the next 24 hours. Thanks to our favorite nurses at 4 North, Lucy will be able to set up camp back in our old room. They didn’t even make us take down the decorations. Always looking on the bright side.
Thankfully, it has been a quiet weekend here at the Bacott hospital residence. Lucy has a fresh new PIC line in her right arm. They tried to re-thread the left one but it didn’t cooperate. That was fine by us because as the pictures prove, Lucy needs access to the fingers on that left arm. Of course, she also chose this weekend to begin to entertain the idea of taking a pacifier, and becoming ambidextrous in her finger sucking. Silly girl!
The redness continued to keep us on edge all weekend, popping up pretty frequently but then fading just as we started to really worry. So if you stopped to say a prayer for Lucy this weekend … thank you! It is taking her body longer to clear the methotrexate from her system this time, but we have been assured that this is ok and no reason for concern. Because her blood levels stayed steady, even jumped a tiny bit, after we went home a few weeks ago, Lucy’s official level of “clearance” this time around is much lower than the standard – in fact, practically zero. This is more than fine by us, we are happy to wait! We would do anything to avoid ever seeing that nasty rash again!
The good news is, Lucy has been incredibly happy and playful this weekend. She is now sitting up on her own and in addition to her two little choppers on the bottom, is cutting at least one tooth on top now too. She is sleeping well and eating cereal and avocados. Today she got her Foley catheter out, so she can really move and play! She will stay on fluids and a special medication to help her flush out the last traces of this chemo, then hopefully we get to go home for a day or two. For now we continue to wait ad enjoy these good days!
After a bit of a cliffhanger yesterday morning with the latest dose of chemo threatening to cause another massive rash, we can report today that her skin seems to have fended off its nemesis – Methotrexate – for the time being. She was happy, playful and talkative for most of the day yesterday, and by “playful” we mean “sitting up and rocking back and forth so much that it looked like she was riding a mini- mechanical bull”.
Occasionally some redness will appear on her skin in the areas that were heavily affected last time, but nothing near the severity.
One nuisance that kept popping up was a repeat problem with one of her Pic lines, the IV lines that have been run through a vein in her upper arm since this all started. Pressure kept building up, setting off the alarm on the IV pump and causing problems flushing it. None of this caused her any pain, but after an x-ray gave the doctors a closer look yesterday, they decided today that they would replace the line with a new one.
So this morning she is headed to the operating room for the procedure. It isn’t considered a major operation, but it’s significant enough that she will be sedated, hasn’t eaten since 4:00am and will probably be a little loopy for a while when she’s out. We’ve publicly lobbied that the new line be moved to her right arm, since the current location in her left arm tends to give her some problems getting those two fingers in her mouth. People, you don’t mess with the middle fingers on Lucy’s left hand.
The Methotrexate hasn’t quite cleared her system yet, so she’ll continue to get fluids around the clock and subsequently will continue to see her cheeks balloon up to softball size. But that’s okay with us as it doesn’t diminish he level of cuteness. Depending on if and when the chemo is cleared, she may get another day or two at home.
We shall see.
When Lucy was first diagnosed with leukemia my head was spinning, mostly with bad thoughts. One glimmer of hope, at least, was that this is a cancer I had heard of, and I believed, was highly curable. After the tough first meeting with our doctor, and as the weeks have gone by and our new reality sinks in, we are beginning to understand a little more what we are dealing with. Although Lucy has ALL type, the most common type of leukemia, her age puts her in a class of her own – infant ALL – which is extremely rare. I finally asked the doctors, tentatively, if they saw, oh say, maybe one case like hers a year? The answer was “no way”. Many of the medical staff here have never seen a case of infant ALL, though they are way too kind, encouraging and professional to directly tell us this.
Because of this rarity, there really is no expert to talk to about Lucy’s treatment because there are just not many cases to refer to. This has been hard for us in many ways, but mostly at this beginning stage. We want to know what to expect as far as reactions – this is why we have asked and received many, many prayers for Lucy to be a responder!!! It is the best we can hope for, and the cancer is responding to treatments. Thank you!
The reason I bring up the rarity of her diagnosis is that it seems out sweet little Lucy is determined to be unique in many ways! The horrible skin reaction was a mystery for so long because it is so … can you guess … rare! Methotrexate is a very old drug, used for many things, and pretty well observed because of this, which is why there was a debate as to whether or not toxicity was the cause of her rash.
It became positively clear when she started to show signs of a repeat rash only four hours into her 24 hour infusion of methotrexate yesterday evening. Our team of doctors responded right away and put a plan in place. We all watched her through the night and she made it safely through 12 hours of her chemo infusion. This is a 50% reduction in the original prescribed dose and the docs are going to discuss and come up with a plan for the next time she needs this chemo. The support here at Cardinal Glennon has been amazing. Dr. Lauren (who is also a mom of two kids almost the same age as ours) was such a source of comfort to me through the night. We were in a panic when we realized Lucy wasn’t tolerating the treatment. She and our beloved Dr. B were confident that a new plan for Lucy would be reasonable solution. So now, we wait and see. We want to flush this chemo out as quickly as possible, with little side effects. Lucy looks good and seems to feel great today – praying it stays this way!