It’s official that I hate cancer, and now am beginning to hold a grudge against chemotherapy as well. It appears we came back to hospital sweet hospital just in time, as Lucy has gotten worse over the night/day. The rash is ugly, hot and relentless. Her mouth sores have spread, even to her lips. Her counts are plummeting, and the last shoe to drop … she spiked a fever today. She is back on an arsenal of meds to keep her comfortable and treat the fever and possible infection. It is so strange that only a few days ago she was home and down to a single necessary prescription, and a preventative one at that! This is one of those rough patches that we were warned about, but it is still quite unwelcome. No chemo this week, or until she gets better. While we want her to rest and heal, it is also a disappointment to be off her chemo schedule. Not just because it puts us further from the end of treatment, but I don’t want to give leukemia a chance to fight back! Heal quickly Little Lulu, and back to the battle!!
Please pray for Lucy’s comfort and speedy recovery! We thank you!
The good news – we had a wonderful weekend at home! We were probably the only family in St. Louis thrilled to spend this beautiful weekend indoors, doing nothing in particular, just enjoying each other’s company. Violet and I made up for lost time by going to the grocery store, Target, and library together. Some things that were previously my “chores”, felt like exciting excursions with my little lady! Josh and Lucy had lots of quality time together too – relaxing on the couch, and lots of playing.
The bad news – Lucy and I are back at the hospital to tonight, a day early. Here’s where the ugly comes in. Lucy’s skin was looking a bit red over the weekend, but after calls to the doctor we both thought it was just some mild irritation. It gradually got worse and this morning was pretty ugly. Her poor little cheeks are bright red and the rash is splotchy, hot, and really nasty looking in some spots. Mouth sores have also arrived, making Lucy very uncomfortable. The doctors are working to figure out what is causing this reaction, it could be one of her medications. I am praying that it is not the chemo because she has another round this week! However, Dr. B has postponed her chemo that was scheduled tomorrow – she said she wouldn’t put her through chemo in this condition. Even though no one likes to see her uncomfortable, Lucy gets lots of attention around here! The wonderful nurses here on 4 north put us up in “our” old room when we arrived. Two of the residents were finished for the day but made a specially stop by our room to see Lucy when they heard she was here. Our little Lucy makes a lasting impression and I’m sure she will for a long time!
While I am sad that Lucy and I won’t get to wake up and hug and kiss my big girl Violet on her third birthday in the morning, I am glad that Lucy is feeling better after some pain management here at the hospital. Chances are, Violet won’t feel slighted in the least because she has the best dad in the world. He may not have mastered the ponytail yet, but josh is taking such good care of Violet that it is thanks to him that she is handling this all so well.We still had three awesome nights at home together! Please pray for Lucy to recover quickly from this bump in the road!
Happy Birthday Violet!!!
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!
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!
Today was a rough one for Lucy. As noted in my last post she was having some tummy issues. Well, it got worse. She vomited quite a bit this morning and seemed generally uncomfortable. We added another anti nausea medication but it didn’t seem to help. The nurse offered pain meds next, and explained that Lucy was likely suffering from sores in her throat. Sores in the mouth and throat are a side effect of chemo, and the symptoms fit, so we felt a small victory knowing the probable cause of her discomfort. Tylenol seemed to help, and she has been keeping down her afternoon meals! She still gets fits of fussiness which we now believe to be pain in her throat, but in between, she still gave a few smiles today. One of the doctors also mentioned that the steroids could cause a fungus in the throat, which she will check for, and if this is the case there is a remedy. Thanks to our kind and patient nurse today, Kim who helped us through an emotional day. And big thanks to Aunt Suzie and Mallory, Uncle Jared, Uncle Justus and Aunt Susan for keeping Violet entertained during this tough day!! So far our family time at the hospital never goes as planned, but thanks to family and friends jumping in to help with whatever we need at the last minute, it all works out. Violet is so loved!!
As parents, Josh and I have learned the real hard truth that nothing is worse than seeing your kids suffer. There will be more tough days, but this one was emotional as we struggled to interpret what exactly was bothering Lucy, and even more frustrating – how do we help her! It is a blessing that she will never remember this, but so difficult that she can’t tell us how she feels.
At the end of this day I take comfort in the fact that despite yucky side effects, the chemo is still doing its job, but tonight I pray for strength and comfort for Lucy.
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!