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!
Lucy cleared the methotrexate from her system, hooray!! Her levels were down below the threshold Friday morning, so later that afternoon she got her catheter out and fluids unhooked. They have been gradually turning the fluids up over the past few days which made her pretty swollen so it was a relief to get her off them. It may be just water weight but her chubby little cheeks and thighs sure are cute!
We also said goodbye to Dr. Su who has been caring for Lucy since she was admitted. She is moving on to another service for her residency. She always encouraged us to ask her any questions we had, anytime. She also genuinely shared our excitement with each hurdle that Lucy met and totally dominated. We will really miss Dr. Su!
For now Lucy gets another little break until chemo again on Tuesday. We are still keeping an eye out for mouth sores (boo!!!) that could still occur from this latest round if chemo. She will repeat the same process on Tuesday so we hope things stay uneventful this time and next time!
Just catching up on the latest celeb gossip
We are still riding high from Lucy’s latest test results, but even better – Lucy is feeling great! She is the old happy, energetic Lucy! It is such a thrill to go days without hearing her cry! We are granted this break in treatment due to “count recovery”. Lucy’s bloodwork has to reach certain levels in order to get the next round of chemo … to knock it down again! The big number we watch is her ANC, which needs to be above 500. It literally hit zero today, so no where to go but up! Her diaper rash also needs to clear up to get this next type of chemo, and the fact that it is improving tells the doctors that her marrow is beginning to make healthy white cells. Yea!! Treatment will start sometime next week, we just wait and watch right now.
She has also gotten her appetite back, just in time. We are all concerned about her weight loss, her medical team “officially” now. While the dietician has some interesting ideas to increase her calories … I’m nursing as much as she wants and we are trying to get her to eat from a spoon. It is not a skill that comes naturally to a baby her age, but we won’t give up! The speech therapist suggested letting her play with the cereal, and we had a breakthrough! She grabbed the spoon and shoveled it in herself! Well, some of it in, a lot of it everywhere else. That’s the kind of spirit we like to see – Lucy taking charge and kicking leukemia’s ass!! Eat Lucy eat!!
Yesterday the whole family got swabbed for bone marrow donation testing. Lucy, mom and dad were tested just for genetics. Unfortunately mom and dad would not be potential donors. Siblings are the golden ticket. It is impossible to really explain to a three year old what this simple swipe of the check with a q tip means, and terrifying as parents to begin to imagine that both our girls may be in the hospital … so we don’t. This is just a formality at this point, and here is the prayer request – we pray that Lucy responds so well to chemo that she doesn’t need a bone marrow transplant!! And I already know the next question. If Violet doesn’t match, then it will go to the national registry; other family members or friends can not donate directly.
Physical therapy dropped off a floor mat for Lucy to roll and play on. We can’t wait to set her loose! As you can see, she is trying to make a break for it here!
The walls of 4 North at Cardinal Glennon (whose hallways we pace endlessly when Lucy is feeling bad) are adorned with beautiful artwork penned by children with cancer. The one that has always stood out to me is a picture that simply reads “hospital sweet hospital”. Today marks three weeks since I took Lucy to the ER in the middle of the night, three weeks since the four of us have slept under the same roof, and suddenly that piece of artwork hits home and means something personal to us.
Looking at our “roadmap” of chemo for Lucy we knew that it was intense, without even really needing to understand the details. Our doctor also warned us to expect to spend a lot of time in the hospital this year. We have been taking it all day by day, and we knew that we could expect Lucy to spend these first four weeks in the hospital for sure, but finally we got the straight answer on the upcoming weeks. More realistically, we should expect that Lucy (and Kenda, who holds her meals!) to be in the hospital for 18 weeks. Yikes. Our doctor gave us this fair response, which we truly appreciate, so that we don’t get our hopes up: There will be days (just days) when we can go home, but take them as a “bonus” and not a guarantee. Yeah, this totally sucks, but still we are so lucky in many ways (hence our top 10 list posted yesterday). Immediately I thought of so many military families who deal with a parent gone for months, and the many, many patients here who live hours away. We are so lucky to live a few minutes away – we get to be together every day! Violet comes to the hospital after school and we try to always eat dinner together. Our proximity to the hospital will also factor into the doctors letting us go home, so we have an advantage that many patients here don’t.
The middle of this week technically ends the “induction” phase of Lucy’s battle. It turns out we don’t get the break we anticipated but instead go straight into the next phase, and chemo on Friday. So we honestly have no idea when Lucy will come home, or for how long, but until then, 4 North is our home away from home… Hospital Sweet Hospital!
Lucy had another big chemo day yesterday. She had LP with the triple chemo in the spine, another chemo by IV and bone marrow aspirate. She made it through the procedure comfortably and even handled the fasting before hand well. Actually, that was kind of a bummer because she didn’t want to eat most of yesterday! As I dropped her off in the procedure room I saw her poop face and warned the room of medical staff … “she just pooped, I would have changed it, but it just happened!” After the procedure the nurses told me that Dr. H changed her poopy pants! He has four kids at home and said he kind of misses the little diapers! I’m not sure I would feel the same way about poop, but that was so sweet!
We should get preliminary results today. Just to clarify, Lucy showed great response to chemo in the results last week but they weren’t quite 0% , but 0.7%. Sorry to correct you Josh, but the doc said he hopes for 0% this time. Also, the labs are sent off to Seattle for additional testing, returned in a week. It is pretty confusing, but basically it is a different way to test for leukemia cells, and if I understand correctly, more specific. Last week’s results came back yesterday and they weren’t so great. Dr. H explained the it wasn’t a great comparison between the two, and we are still headed in the right direction … come on Lucy the RESPONDER! We need prayers that yesterday’s chemo and ongoing daily steroids will take down the rest of the leukemia in her body and put her in remission!!
I told the nurses that each day with Lucy feels a lot like labor and birth … emotionally that is! She has bad patches that come and go, we try everything to make her comfortable, and then, when she finally smiles or plays with her toys, elation!! And I actually kind of forget the rough patches in the day. So good day/bad day is more like good hours/bad hours. Yes, the past few days have been rough overall, but when she ends the day with a smile, it eases our pain as parents.
Last night was a good night, we both got some sleep! I was sleeping around 4 am (I think?) when our wonderful nurse Meggie took Lucy’s vitals and then took her out if the room for a bit so I could sleep. These two are middle of the night buddies, thank you Meggie! It was then that she noticed Lucy has developed a rash from the antibiotics she was put on for her fevers on Wednesday. Thank goodness for this timing! Had she stayed in the room with me, lights off, I would not have noticed! She got Benedryl and a slower infusion for her antibiotics so she is feeling great!
So far she has been nursing again this morning and in a good mood!
We have been blessed to receive so many acts if kindness, generosity and compassion already at the beginning if this journey and I know there will be many more. Today’s angel was our nurse, Melissa. I never doubted that nurses are selfless amazing people, but today I realized how much of themselves they give.
Again, we are sad to report another rough day for Lucy. We expected chemo to be bad, but wait … there’s more! She is on daily meds that cause pain, nausea, loss of appetite, sores, constipation, diarrhea, dry mouth – basically anything and everything. Then there are the meds to combat these effects. Obviously, Lucy can’t tell us exactly what is wrong so we guess. All day long. Nothing seemed to be helping today, and the worst sign of all – she wouldn’t eat most of the day. For a breast feeding baby her age, nursing isn’t just food, it’s comfort. It was so tough seeing her cry when she tried to nurse. Melissa to the rescue! She was so patient with us all day, trying anything she could to give Lucy relief and giving us literature on all her meds to help us solve the puzzle. Finally, she called the doctors and went to bat for us! The doctors have been sympathetic to her pain, but they don’t see her all day long, and all these side effects are “expected” so they didn’t give many options for coping. I saw the genuine concern in Melissa’s eyes as the day went on and Lucy cried and cried. She singlehandedly got the doctors to finally order stronger IV pain meds, and our happy Lucy came back to us tonight! Just in time, as Violet and Josh had to go home for the night, Lucy finally nursed! I’m so glad they got to see that. Her blood pressure had been high all day, but after her pain meds it is way down, and she is sleeping comfortably right now.
We certainly still put our trust in our doctors. They are looking at the big picture, which is good! Thankfully they are staying focused on the chemo results because we have been too wrapped up in the side effects to pay much attention to labs and numbers and counts. Not too much new there anyway. It is just time to stay the course.
Also, as expected, her hair is starting the big fall out. We will miss those dark locks, but I’m looking forward to some fun hats this fall!
So we’ve entered Day 4 of the induction phase of the treatment for Lucy. We’ve been told from the beginning that these first few days are the most harsh of the chemo treatments, but to this point, Lucy has continued to chug through it smiling and showing off to the nurses. She continues to eat well (thanks, mom), her electrolytes are good, no fevers and, aside from some periodic swelling, no major side effects are being demonstrated. White blood cell counts are down to .2, which is by design. Obviously there is a long way to go through the induction phase and beyond, but we’re taking everything day by day, so we’re happy with where we are today.
Violet was able to shake off her fever on Friday and as a result may be able to come visit her sister for the first time tomorrow. She was able to FaceTime with her yesterday and at least has a very basic idea of why her sister is not at home right now. Frankly, Violet is so obsessed with doctors, we may never get her out of here when we bring her in.
We are in the process of putting together a separate site to post updates to going forwards. When that’s set up we’ll make sure an update is sent out with the information. Thanks for the support
As for the rest of our family, Violet spiked a fever yesterday (Murphy’s law!) so mom is quarantined at the hospital and dad at home with violet. She is fine, but this is our new reality – germaphobia! We know we can’t keep Violet in a bubble (but Lucy we sure will try!) but this is a good time to note that we have to be really careful now with an immunosuppressed kid. Anyone that comes in contact with us for a while may have to fill out a health questionnaire, lol! Not really, but please don’t be offended if we are kind of neurotic about it. The docs and nurses tell us “that’s life” but this is one thing we can control, so we will try. We will be getting our flu shots!
Lucy is still pretty happy today! I gave her a sponge bath which she did NOT like, but I can’t blame her – that’s embarrassing! All her chemo is yucky and aggressive, but she is starting a pretty rough one for the first time today. So far so good – hoping and praying she stays comfortable.
After just two days of chemo the doctor is very pleased with her plummeting white blood cell counts – now we hope for them to drop, so confusing. God is hearing us!
Well we made it!! Finally upstairs on the “hemonc” floor. It’s much calmer and more comfortable up here, and Lucy has been showing off to her new doctors and nurses with coos and smiles.
The initial spinal tap was sent off for genetic testing of the leukemia cells and today we were told the results. Unfortunately it was positive for the more aggressive form of leukemia. However, Lucy’s wonderful oncologist was still very optimistic when she saw how great Lucy was doing this morning. She said that if Lucy is a responder to the chemo and treatments then it makes no difference at all what kind of nasty leukemia it is! This doesn’t change her treatment plan. Because of her high risk he treatment was already aggressive.
Today’s and ongoing prayer request – let Lucy be a RESPONDER!!!
We will move to a private room in a day or two and settle in to our “home away from home” for the next four weeks. Hopefully settle into a new “normal” soon!
First doses of chemo went ok yesterday afternoon. Lucy was a bit uncomfortable but the nurses have been very accommodating when I asked for pain meds and more anti nausea meds. My girl is still nursing like a champ! They said the steroids can increase her appetite. It has been much easier to nurse her since she has had so many tubes taken out over the past 24 hours. Poor baby was just a big tangle of cords! I can’t remember the names of all these different ports of entry, but it was a lot!!! She is down to a pic line in one arm to administer chemo and Foley catheter. Yea!! After getting the meds she settled in and slept great last night, and is in a pretty great mood this morning.
More good news – word is we will get to move upstairs to the oncology floor. As nice as everyone here is, they keep telling us it will be so much better upstairs.
Father Doyle from St. Michael’s parish, which is where Violet goes to preschool, came by today and gave Lucy the anointing of the sick. She loved the attention on her! Violet has been going to preschool at Holy Cross for all of two weeks and when we told them what was happening in our family the support from the school and church was immediate and amazing.
As I think Josh mentioned, we are reading every message and each one lifts our spirits and gives us strength. Thank you!!