Happy first birthday to our sweet, strong, smart, determined little Lucy! Her spirits are high and temperature is down … unfortunately, so is her white count. One hurdle to get home is down as Lucy has passed the 24 hour mark with no fever. However, we are still waiting for her immune system to bounce back. With a white blood cell count of 0.1 this morning, at least she is headed in the right direction. The rest of her counts are going up as well, which is great. After a bloody nose last night an ad hoc CBC was ordered to make sure her platelets weren’t too low. Good news – platelets had actually gone up since the mornings labs. It was her hemoglobin that actually dropped a bit and was borderline for a blood transfusion. Luckily, by this morning it went up, so we have been able to avoid any transfusions!
Until she gets some white cells to build a defense of her own, Lucy will need to stay on antibiotics and in the hospital, so no birthday at home. I have a feeling she will get plenty of attention … check back for birthday pictures!
For the past seven months our day to day lives have been pretty unpredictable, which is why we rarely make plans too far in advance and are ready for the very high likelihood of last minute changes. Such is the case this weekend. Big sister Violet is spending her first highly anticipated solo weekend with grandma and Papa in KC. We had a whole weekend with just one kid and Josh’s birthday ahead of us. Luckily the decision of how to celebrate was still just in the discussion phase because Lucy decided for us – a trip to the hospital. She slept terrible Thursday night and was a cranky mess Friday morning, with a slightly elevated temperature. I had just enough time to see Violet off on her trip then headed in to the hospital to get Lucy checked out, as I was pretty sure something was brewing (and as I suspected, was told “plan to stay”).
She officially spiked a fever just over 100 when when we arrived and blood work confirmed that last week’s chemo did its job and our little Responder has a white blood cell count of zero. We are still waiting on blood cultures and are really hoping it is not a line infection. We will stay at “hotel Glennon” until she has been fever free for 24 hours and gets some sort of immune system back. So far this morning (Saturday) her fever seems to finally be tapering off. However, her white blood cell count is zero again, so the chances of being home for her birthday on Monday are slim. We can still hope to be home in the afternoon, though – come on bone marrow, make some white cells! On the bright side, Lucy snagged her walker pole again and is feeling well enough to go barreling down the hallways. And it really wouldn’t be so bad to celebrate Lucy’s birthday here on 4 North where she is surrounded by many people who truly adore her!
Luckily we had a little treat for Josh’s birthday Thursday night before Violet left for KC. Happy Birthday Daddy!
Thank you everyone for the thoughts and prayers – Lucy has finished four out of five days of chemo feeling good! The only challenges with this admission have nothing to do with vomiting, fevers or rashes. In fact, her appetite has been amazing and she has been very playful and happy!
Lucy is very mobile now and we anticipated some difficulty keeping such an active girl entertained. What we did not expect was being on isolation! Because of her ongoing runny nose, a nose swab was ordered on Thursday when we were admitted. This means Lucy must be in isolation until the results come back negative. The rapid results were negative but the virus testing takes a few days. Being stuck in the room is tough on Lucy, who is getting very bored, and tough on mom when Lucy gets really upset and a simple walk down the hall would typically soothe her. In addition to being more active, our smart little girl is much more aware of her surroundings and nighttime is rough. The crib is unfamiliar; it’s much more pleasant to sleep in mom’s arms all night! Luckily this is just a five day stay and we can all catch up on rest when we get home tomorrow. We would much rather lose a little sleep due to cabin fever and missing her bed than have a sick, miserable girl.
The coolest part of this hospital stay … Lucy’s IV pole. Many people have offered such kind words of encouragement and comfort during this time, and one phrase that gives me peace is that “God is holding Lucy in His hands” through this. There have been many small blessings during this journey, too many to name. Each time something happens I picture this image in my mind and I know Lucy is so loved. This week, it is the IV pole. After seven moths of admissions, we have never seen this pole, and so far only one nurse is familiar with it. In fact, Dr. F even had to take a picture of Lucy and her pole in action! So what is it? It is sort of a “walker” pole. There is a small handle attached way down low, for a tiny short person to hang on to. The base is narrow to make room to walk behind and the wheels are like rollers skates, making for a smooth ride. Lucy is at this exact stage of development where she loves to practice walking but still needs a little help. We woke up to good news Sunday morning – her swab finally come back, negative! This girl is on the move, roaming the halls, pushing her pole by herself! So how did Lucy get this mystery pole, this particular week? Was it a coincidence? I think not!
Big sister is a big help in keeping Lucy happy.
We just got back from clinic where we found out that our little Responder has bounced back quickly, as usual! Her counts are great, so tomorrow we will check into the hospital and Lucy will start five days of chemo. Lucy has done this round several times before and usually this chemo doesn’t phase her. But we always keep in mind that things change with no warning so we pray for Lucy to fly through the next five days feeling good.
Across the state chemo begins today for Lucy’s Papa (Kenda’s Dad). Cancer wasn’t quite ready to let go, so unfortunately, what we celebrated as his end of treatment was only a brief respite. Papa is strong and ready to battle again! We appreciate prayers for his and Lucy’s complete healing.
It’s hard to believe it has been a week already since our last post. No news is (usually) good news! The goal of the week was to get Lucy to eat, and well … I should have been more specific! The dietitian’s suggestion was to decrease her nursing frequency to let her feel hungry. This worked well, and starting Friday Lucy was eating three meals a day! Then came the diarrhea. All weekend, all that hard work eating, right out the window, or rather, the diaper! As usual, Lucy keeps us guessing. Was it teething? A virus? Too much food too fast? A specific food we gave her? Between cancer treatment and just being a teething, active baby she has so much going on; it’s impossible to know for sure. So after chatting with our nurse on Tuesday we decided to back off the feedings and start over by introducing solids slowly again. This seems to be helping, but unfortunately the scale told the tale, and she has officially lost weight. The good news is her appetite has been decent and she didn’t seem to be uncomfortable or upset through it all so hopefully we can simply get her body back on track.
Today was chemo day at clinic and Lucy did great. In fact, she even ate several ounces of banana at clinic, where she rarely eats. One surprise was that her counts have dropped quite a bit. Her ANC was still high enough for chemo, and also good news was that her hemoglobin, which had been dropping over the last week, remained steady. We were prepared for a possible transfusion this week – very glad it wasn’t necessary. Her counts have been on the high side of the desired perimeters while on this chemo, so to see them drop suddenly and pretty drastically makes me nervous. Our nurse explained that chemo has a cumulative effect. Or, it could be this runny nose and now accompanying cough bringing her down. Come on spring!
Both girls can’t seem to shake these nagging symptoms. Poor Violet has been subjected to another nose swab and isolation this week. Lucky for us, Mawma and Pops are generous enough to let Violet cough at their house all day (which is full of fun toys) and Josh’s work is flexible enough to allow him to work from home, hospital, quarantine area, if he needs to.
With lowered counts and threatening symptoms we are watching Lucy closely for any sign of anything. I never hesitate to call our wonderful nurses at the Costas center with concerns and they are fantastic. Speaking of wonderful nurses, Lucy is due for inpatient chemo next week so we will be checking in to hospital sweet hospital after a long hiatus. Five days of chemo is not necessarily something to look forward to, but we are excited to see our nurse friends on 4 north! Lucy will have to make counts for this round, and considering this latest drop it could be close. We decided we will go to Costas on Wednesday, the day before scheduled admission to get the verdict – no sense in packing up unless we have to.
We enjoyed the beautiful weather last week, taking a few trips to the park. The sisterly spat was short lived and long forgotten as violet’s pleas of “NO Lucy!” Have been replaced by upset cries of “I want to play with Lucy ” as we tried to keep them apart while she was coughing. We are so lucky to love these precious girls!
Lucy had a quick, uneventful day at clinic yesterday. We were able to get started with chemo right away because we had her counts done the day before. Since she gets her oral chemo first thing in the morning I had to pick it up at pharmacy the day before, so we had her labs done too.
Lucy is feeling pretty great and is really active, but once again her weight is staring to become a concern. She was making good progress, then just after Christmas she had to get that nasty high dose chemo which made her so sick. It also wiped out her immune system which led to the blood infection that she fought for almost three weeks ( and Darth!). All this set her weight back quite a bit. So while we were at clinic we sat and talked with the dietician about how we can get Lucy to eat more, and make sure that every bite counts. She had been eating pretty well, then last week what we think was teething pain led to her making this face any time we came near her with a spoon.
After talking with our nurse we discovered it could have been jaw pain from the chemo she got last week, so we will look out for that next time. These next two weeks of oral chemo and weekly chemo infusion should be easier on Lucy, if history repeats itself. We are hoping this means we can put some of the dietitian’s suggestions to work and put some weight on Lucy.
Violet and Lucy has their first sisterly disagreement the other day. Don’t get me wrong, there is still a lot of love and idolization, but as I mentioned, Lucy is very active, and all she wants is to be right in the middle of what her big sister is doing. I’m sure I will be rolling my eyes at their bickering some day, but this was a precious moment! Violet did not agree.