Once again, our lack of posting means we were having too much fun this weekend! We celebrated Violet’s third birthday on Saturday with a small party at the hospital (it was really more for mom, who can’t leave Lucy). Violet was so excited about it all week, she couldn’t stop talking about seeing her cousins and showing them “her” playroom here on the fourth floor at Cardinal Glennon. We had hoped to be home for the event, but all that mattered was that Josh and I were both there.
Lucy has been feeling much better! Josh was accurate in his description of the rash as more like a bad sunburn. Like a burn, she is now in the peeling stage. Few places on her body have been spared the big skin shedding, which makes for a very itchy girl! She has been very squirmy and itchy in the evenings and into the night, but she is making progress! Because of her pain and discomfort when the rash began, she has been on a narcotic IV drip around the clock since Tuesday. It has been gradually turned down over the last few days and will hopefully be fully weaned off by tomorrow. Her mouth sores are healing as well. Luckily, she has still been nursing well and even ate some cereal today for the first time in several days! As her cheeks heal it has been wonderful to see Lucy smiling again. She has been playful and happy the last few days, and wanting to be held and cuddled again. It was so heartbreaking when she couldn’t stand to be touched – we just wanted to comfort her but couldn’t pick her up when she cried. Now she is sitting up, rolling over and playing with her toys! We also hauled in her bathtub for a soothing oatmeal bath and she splashed and played in the water. Her doctor thinks she may be ready for her next round of chemo on Tuesday. Hopefully she heals quickly and we can get back to kicking cancer’s butt!
(Cue subtle transition to Josh’s portion of the update) While Kenda was taking care of Lucy on Sunday, me and Violet headed to Dames Park in O’Fallon for the Love and Loot for Lucy party. It was much colder than anyone had expected when the sun dipped behind the clouds for the day, but we still had a great turnout. Looking around and seeing all the friends and family gathering together and realizing that they are there to support your daughter is pretty humbling. Even moreso considering but they were also missing the Cardinals playoff game and we know that doesn’t happen often in this town.
The generosity of everyone that came was astounding when we got home and saw that they had donated over $3,300 to Lucy’s fund. Another $1,500 is coming from a TJ’s Pizza fundraiser led by my unbelievable parents who have supported us in any way we’ve asked to this point.
So a huge thanks goes out to those who helped organize the event and everyone who came out to show their support for Lucy’s battle.
Lucy eating! It’s a messy process, but we are working on it!
One of Violet’s favorite places – the playroom on 4 north.
The Girls. We could not get Lucy to look at the camera – all she wanted to do was look at her sister. The feeling was mutual, as you can see Violet tickling her sister’s toes.
A nice quiet family evening together at “home” on 4 North. Lucy is enjoying tummy time on the new mat from PT. She was already rolling over and scooting around before her diagnosis almost 4 weeks ago, and we are thrilled to find she has not lost the skills!
After a bit of a struggle this morning, largely due to not getting fed for 5 hours per doctors orders, Lucy cruised through two traditionally unfriendly procedures – the lumbar puncture and bone marrow biopsy. The doctors didn’t need to sedate her to the point where she was completely out of it, they just gave her enough happy juice to keep her comfortable during the procedure. We were called into the room after about 45 minutes and got to witness slightly stoned Lucy for about a half hour. At one point she wrapped her arms and legs around the nurses forearm like a baby chimp and tried to latch on. She was only mildly disappointed when she found out that the nurses arm was not producing milk.
As Kenda mentioned this morning, thanks to a meal that Kandace brought in, we were able to sit down with the whole family to have dinner for the first time since this all started. The nurse said she peaked in and it looked like we were a family living in a studio apartment. One moment that really hit me tonight was when Violet was playing with her mom as I was holding Lucy, I got to see a big smile on appear her face whenever Violet would laugh. Over and over again, she would hear the laughter of her sister and mom and break out her precious smile as if all she wanted was to be one of the girls.
It’s funny how when your child is born, as a parent, you instantly start to establish all these elaborate hopes, dreams and goals for them. And then when something like this comes along, all of that gets swept away and replaced with one dream, one hope, one goal. For her to be a cancer survivor. Earn that title and the rest of the story is hers for the making. She can be anything, anyone she wants to be. She’ll always be a cancer survivor. I don’t know why, but that thought sort of brings an unexpected simplicity to whole thing in my mind.
It’s a big weekend as the Morado family is arriving from KC. Grandma will be in tomorrow along with (great) Aunts Ruby and Ruth, Uncle Jared will be stopping by and Aunt Suzie will be in Saturday. I have no doubt that Lucy will be all smiles.
Violet got to see her sister today for the first time in a week! It was so great to have our little family of four together again. Violet recovered quickly from her fever, the long waiting period was extra caution on our part. We had video phoned with violet so she knew what to expect, and she took it pretty well seeing her sister in the hospital. It helped that Lucy looks great – much less swollen and a very happy girl. Violet was a bit nervous at first and kind of distressed when Lucy fussed (during routine vitals being taken), which wasn’t often.
An extra bonus, we met with the child life specialist today. We didn’t know he would be in on the holiday but the timing was perfect. His job is to help kids cope with cancer – siblings included. In our case, Violet may benefit from his services more than Lucy. Violet got her own “chemo duck” and a few new toys. She loved playing in the playroom and in the outdoor playground here at Cardinal Glennon. And Lucy got to take a ride through the halls in a wagon!! This was very exciting – her first time really getting out of bed in a week. Another good thing – she got her Foley catheter out!! It’s so much easier to cuddle her!
During one of our dreaded and scary conversations with Lucy’s oncologist (who we absolutely love) she said to us “you must enjoy the good days”. We agreed, of course, but we lived it today. We spent 10 glorious hours at the hospital together. Lucy was feeling great, Violet was having fun and that is all that matters today.
Medically, there’s always something to talk about but today is about our girls. When this all happened I know we asked, “Why?” but the harder question for me is, “Could we have known sooner?” I know those with little ones hugged them a little tighter upon hearing our news, as would have I. With Lucy, we thought she was a bit unhappy from vaccines a few days prior and teething. Of course there was guilt when we found out we had brought her to the ER in the nick of time.
Then yesterday – I can see the tiny outline of a white tooth about to break through. She really was teething! Vaccines really do hurt, and babies just fuss. We have reassured ourselves many times over the past few days saying “that’s Lucy”. We DO know our kid.
So here is all about Lucy: she has the cutest and funniest facial expressions you can imagine on a 5 month old. She loves to suck her fingers – middle two, left hand only. She loves tummy tickles and hearing her sister say “luuuuucy!” She LOVES to smile and the girl plays with toys like its her job to test them! She literally coos and gurgles likes baby, it is so cute. And she will NOT lay her head on a shoulder, no matter how tired she is! But she loves attention and if you don’t pay her any, she will yell! Not cry, but literally yell at you. She is so good natured and mostly a happy gal.
That’s our Lucy!