We made it home Saturday. It was a brief, uneventful hospital stay, thank goodness. Once lucy’s fever finally broke it was just a matter of waiting for some count recovery so we could go home. All of the doctors, even the ER doc, commented that Lucy looked great, even with the fever. The sneezing and runny nose that came along with the fever were clues suggesting this was a virus and the tests came back positive for a common cold virus. I had no idea there were tests to confirm a common cold! They also take great care to rule out things like flu, RSV and more serious bacterial infection, but it was kind of a relief to confirm a common cold virus. At the same time it was a little frustrating that Lucy caught a cold because we are trying so hard to keep her secluded and safe. We feel like such hermits, and she still caught something! Our doctor said it is possible that anyone who came in contact with Lucy had a virus and showed no symptoms, and Lucy’s nonexistent immune system just couldn’t ignore it. So we just continue to do the best we can… with a child who puts everything in her mouth!
Besides feeling a little crummy from the cold, Lucy’s crankiness was an indicator that her hemoglobin dropped really low, so she had a blood transfusion before we left. We had hoped that this, along with the cold is what led to her inability to sleep more than an hour at a time all night (unless she is in our arms, of course) but after our first night back, no such luck. She is still on neupogen so it’s possible she is in pain or just plain uncomfortable from this. We go to clinic on Monday, and are really hoping that her ANC is high enough to stop neupogen. She will still be on isolation in the clinic until she tests negative for the virus. Can you believe this sweet little thing is “dangerous”? Well, only to her little friends at the Costas center and on 4 north. Truth be told I’m grateful for the care they take to isolate anyone who is sick. After our clinic visit tomorrow we should have a definite plan for her next chemo admission.
Lucy hit another developmental milestone in the hospital. Her obsession with grabbing the crib bars (in attempt to escape?) finally paid off. I turned around for a few seconds and turns back to see this girl, standing, and very proud of herself!
Right when we thought we were settled in for as normal a Christmas as we could expect, Lucy’s compromised immune system stepped in and changed all that. For the first time in weeks, Lucy spiked a fever last night and just like that Mom was packing up and heading to the hospital.
At least we got to spend Christmas morning together.
As of this afternoon, the fever was still lingering and the doctors are trying to pinpoint the cause although they think it is a virus. With the flu going around they’re extra cautious about it showing up on the 4th floor at Cardinal Glennon where immune systems are in short supply, so Lucy is in lockdown in her room. No wagon rides until they are able to rule it out as the cause, which means she (and her mom) are going stir crazy. The chief symptom of the fever – aside from her steaming hot head – is general fussiness. When her temperature rises, Lucy is not a happy girl. Then again not many of us are in a great mood when our temperature hits triple digits.
This marks the first time since the original battle with Methotrexate that we have had to make an unscheduled trip to Cardinal Glennon and we assume that it will push back the chemo she was scheduled to start on Monday. Hopefully we get to spend New Year’s Eve and New Year’s Day together at home. If so, we have a crazy NYE night scheduled, where me and Kenda will put the girls to bed and pass out by 9:30 then wake up annoyed when we hear fireworks at midnight. Like I said…crazy.
Merry Christmas everyone!
We are feeling truly blessed this Christmas as we enjoy time with our girls at HOME! Even though we couldn’t attend the family parties in person, we still felt the love. It really was like the 12 days of Christmas as the presents arrived in the mail. We enjoyed a few family visitors (and more presents!) yesterday and had some delicious gifts dropped off too. Yummy bread from Bob and an amazing Christmas dinner from the equally amazing Kandace (we are keeping her in our prayers too as she goes through radiation treatment – nothing slows her down!) Thanks to modern technology we even got to visit via screen time with some family in KC. Lucy dug right in and enjoyed opening her Christmas presents. And just like any other baby, she went straight for the box!
Last week was a busy one for us. Lucy and mom spent Monday through Friday at hospital sweet hospital for some chemo. The rest of the week went just as good as we had hoped. Lucy was playful and happy through five straight days of chemo. Seriously, she makes this look easy! Josh traveled for work a few days last week so Violet stayed with Aunt Susan. This was great fun in itself, but even better, she got to play with Pepper the dog who has been lovingly cared for by Susan and Zac pretty much every day since Lucy’s diagnosis four months ago. We are always well cared for at Cardinal Glennon, but we still missed dad and violet. Violet had a School Christmas concert on Thursday, so with the help of grandma, Susan, and dad (who generously missed a big holiday party for his girls), we got her to the school on time! Our good friend Liz stayed with Lucy so mom, dad and grandparents could all attend the big show! It was fun and felt kind of weird for Josh and I to be out and about together (one of us is always with Lucy) – it’s been a while! It was a little bittersweet because we wished Lucy could have been there, but there will be many years of holidays to come!
Thanks to the tireless efforts of our nurse Amanda, we made it home Friday evening! Lucy’s IV line was busy! She got two chemo infusions, rescue drug/hydration after, monthly antibiotic, then a blood transfusion. That’s a lot to pack into one day! We even made it home before violet went to bed. Lucy had started to lose interest in nursing in the past few days, which is not unusual with all that chemo. But she was still so happy and rambunctious that I suspected her hemoglobin might be low, which labs proved to be true. So since getting a transfusion and being home she has been eating better and sleeping pretty well … and “helping” with the laundry. She missed her toys too!
While at home Lucy is on back on the nightly infusions of neupogen, which we know can cause bone pain. Lucy has usually done well with this, but last night we discovered how lucky we had been. Lucy woke from a deep sleep about an hour after her infusion crying and squirming and was pretty inconsolable. Often it’s hard to tell, but this was a clear sign that she was in pain. After giving her “big” pain meds (morphine) she finally settled down. With many days of this medication ahead if us, please pray for Lucy’s comfort and for mom and dad to have the wisdom we need to ease her pain. We hate giving her a narcotic, but not as much as seeing her in pain!
We are at Costas today for lab work and the dreaded dressing change, but we are so happy to be here today because it means we will all be home for Christmas!! We are looking forward to a calm, uneventful week. Thanks to Sara, the transplant coordinator here, we got to come to clinic today in this sweet new ride. It’s a jogging/bike carrier/stroller that is perfect for immunosuppressed kids. It keeps the toys in and the germs out – perfect!
Just a quick update to let everyone know Lucy is doing well! No vomiting, still very playful just a little swollen from the fluids, as usual. We are just over halfway through this round of chemo after finishing day three of five today. We should be heading home Friday or Saturday. Looking forward to crossing off another week of inpatient treatment! We have been so spoiled with stays at home that five days in the hospital feels really long now. But the bright side – no Foley catheter with this chemo! Suddenly dangling IV lines aren’t so bad. It is much easier to keep Lucy entertained, and boy is she busy! I think she is making it her personal mission to break the bounce right out of this excersaucer! It took several attempts to get a good photo – mostly she was a blur!
Lucy and I went to the hospital packed and ready to check in for a week of chemo this morning. Starting therapy week 13 on Friday the 13th … Good thing I’m not superstitious! However, it was all for naught because Lucy didn’t make counts, her ANC was too low. It wasn’t terribly far from the mark, but this next round will hit her white cells hard so the doctors decided to give her more recovery time. We will go back Monday to try again.
This next round is an infusion of two different chemos back to back, then a four hour infusion of a medication to protect her bladder, every day for five days. That’s about 6-7 hrs of total IV infusion time everyday so that’s why it is inpatient. Plus, each chemo seems to be hard on a certain organ and this one takes it out on the bladder so she will stay on fluids and be monitored. If I remember correctly this is where we stick cotton balls in her diaper so her urine can be tested about every 8 hours. Sounds simple enough … but then Lucy seems to choose that testing hour to poop on the cotton balls. One of the chemos is known for causing kids to feel nauseas and they can sometimes get really pukey, but Lucy did very well the first tim she did this round. In fact, checking my notes she even ate pretty well during it. However, we won’t take this for granted, we have learned to expect the unexpected. And keep praying!
We are grateful to enjoy this frosty cold weekend at home. Lucy will be working on her forwards crawl. I am trying to lure her with a popple … It may be working
We are back home after a weekend getaway at hotel de Glennon. Not a spa treatment, just a little chemotherapy. Lucy cleared this round of methotrexate the fastest yet and so we got home on Monday. So quickly, in fact, that one of her docs suggested that perhaps she could have tolerated a little more. Back to our love/hate relationship with chemo. It is toxic, no doubt, which makes it hard to watch our sweet little baby take so much. At the same time, it is also literally saving her life. So did she get enough? Dr. H reassured us that if perhaps the 50% dose reduction was low, these last two doses of chemo represent maybe 1% of the chemo she will get overall, so no need to panic. The roadmap of her therapy is just a guide, really. We have to do what is best for Lucy. And despite the fact that her blood levels of this chemo were only about a third of what they were the fist two rounds, Dr. B believes this dose was the right amount for Lucy, because she still suffered some adverse affects. Thank goodness she did not have to repeat the horrible peeling burn, but she still got the redness every time, and mouth sores again last time. With this being the result at the lower dose, I agree with Dr. B that it was enough!
So we return on Friday for the next round, that is if she makes counts. These last two rounds were intense and hard on her body, so there is a good chance we may be sent back home for the weekend. Home is always the best, but if she is ready then we will be glad to put another round behind us too. Meanwhile we will enjoy these next few days at home, not feeling like we are missing out because it is too cold to go anywhere anyway!
Lucy made counts yesterday and this evening will finish up her 24 hour infusion of the worst chemo to date. The good news is, if we are reading her roadmap correctly (big IF, and anything could happen) this is the last time we will see the high dose version of methotrexate. Hallelujah! By 8:00 pm tonight the chemo will be finished and we begin the waiting game for clearance. Thanks for everything methotrexate, we appreciate what you do, now get out!! Lucy will keep getting Benadryl a little longer this time to avoid the redness which did flare up a bit last week. And we won’t know for about 5 or 6 days but we are praying for NO mouth sores this time.
The hardest part of this waiting game is keeping Lucy entertained. With a Foley catheter in to protect her skin from this toxic stuff as it is excreted in her urine, she can’t move around and roll and scoot and play like she wants to. As long as she doesn’t get the skin burn, we will wait as long as it takes. Meanwhile, Lucy has a few major concerns:
“Dad, could you try to get the yogurt IN my mouth?”
And “How do I get out of this jail cell?” Big sister Violet is attempting to be an accomplice.
Lucy is eight months old! She sitting up very well on her own and crawling … backwards. She’s even starting to pull herself up. She’s definitely an overachiever in the teeth category with number 7 making its way in. Its debatable wether or not she says “real” words yet. We think she says mama and dada, but “chemotherapy” is a little harder.
The good news is, we’re still home for a few more days. The bad news is, Lucy’s chemo has been delayed. Actually I’m not all that sad about it; I thought she needed a bit more recovery time before getting methotrexate again. Officially, she didn’t make counts. Her ANC was too low and she also has mouth sores which need to be healed or healing before she can start methotrexate again. I’m told we are not alone in having mixed feelings about delays. When your kid is sick or hurting you obviously don’t want to hit them with chemo again, however it’s not necessarily a good thing to get behind on your schedule or to stall treatment. But with methotrexate in particular hitting her so hard I’m glad she gets a few extra days of rest. Also we’re not that concerned about keeping things exactly on schedule because this is a long road. Lucy will be celebrating birthdays not just monthly milestones while she’s on treatment so what’s the rush? I’m not going to pretend I don’t cross off each and every treatment on her treatment road map but this is all part of taking it day by day.
We head back to the hospital on Friday to try this again. For now, we will enjoy this gift of a few extra days off. I pray it will help Lucy get well and endure the methotrexate pain free, and I know violet loves having her sister home a few more days. She went to the bathroom and scrubbed her hands yesterday and asked “can I please give Lucy a hug now?” Lucy was more than willing.
Checking into the hospital with Lucy is beginning to feel familiar, and brief trips home more normal as well. We have become pretty comfortable with Lucy’s medication schedule and her central line care, and the house is finally getting back to some kind of order – as much as can be expected with a three year old in the house! I still spend at least half of the day disinfecting things, mostly toys since Lucy is putting everything in her mouth, but this has become routine as well, so we are feeling more relaxed. Violet is also getting used to having her sister around more and although we can’t let them wrestle around together, these girls love being near each other. Lucy is instantly calmed when Violet talks to her, and she could just watch her big sis play all day.
We are relieved to find that the steroid wean has brought back our sweet little baby! She slept for five hours straight the other night! Lucy is at that perfect age where she can sit on her own, but not yet crawl away, so she is easy to entertain. Here she is very excited to get some floor time in “Violet’s” playroom while her big sister was enjoying some spoilin’ time with Jean.
After a few nights of good sleep Lucy had a rough one last night, waking a lot and fussy. She wasn’t interested in eating solids today, and sure enough, we see some mouth sores. However, she is still nursing and in a pretty good mood most of the time.
Lucy will check back in to hospital sweet hospital on Tuesday for more high dose methotrexate. We will pray that this round goes as well as the last one, with a bit of room for improvement – no mouth sores please! Tomorrow we will pack up for our brief stay, but mostly, we will be thinking of Lucy’s grandpas, who have their own medical journeys to begin. In KC, Papa will begin his ninth round of chemo. After this one, just one more to go. Papa has been so strong and inspirational – he is kicking cancer’s butt! Here in St. Louis, Pops is heading to the hospital for hip replacement surgery… again. He has endured pain for so long, we can’t wait to see him running and jumping, haha! And with another family member down south facing a surgery tomorrow as well, we will be spending this last day at home before another admittance grateful for our happy time together and praying for others.