As Kenda mentioned last week, on Tuesday we sat down with Dr. B to discuss what the next year will hold for Lucy and her ongoing treatment. Will there be 12 more months of ‘maintenance’ treatment or are we approaching the end of her scheduled chemo? While we haven’t reached a definitive decision (sorry for the teaser) the meeting itself was a good opportunity to reflect on how far we’ve come since her diagnosis. In some ways the year has flown by and in others, it’s dragged on forever, but regardless it’s still hard to believe that we are nearing the end of her 46 week protocol when every step of the way still seems so fresh in our minds.
And 40+ weeks in, we are exactly where we want to be – in remission with an otherwise normal toddler running around our house. The pause to reconcile how far we’ve come since the first day even brought a tear to Dr. B’s eye and sparked an impromptu group hug.
Later that night however we got to see the flip side of the battle against this disease. A few weeks ago, a young boy named Jack Pimmel had been diagnosed with AML at just 3 weeks and was being treated at Children’s Hospital. With a disease as rare as infant leukemia, Kenda and I had developed a bond quickly with his parents, Joe and Kelly. At such a young age, Jack has been suffering through a variety of complications that came from both the disease and the chemo intended to fight it. Last night they posted on their Caring Bridge site that Jack had gained his angel wings at 8:08 surrounded by his family.
Joe’s post eloquently asked all of us to take nothing for granted when it comes to something as sacred as your children. It’s a lesson we learned under less than ideal circumstances in August 2013, but also one that we need constant reminding of.
Even despite the challenges that have been handed to our family and to Lucy, Jack’s story helped us remember that, as of right now, we’re one of the lucky ones. We unfortunately never got a chance to meet Jack, but that makes it no easier to come to terms with their loss. As crystal clear as my memory of Lucy’s struggle to survive on Day 1 remain, it’s still hard to fathom what Joe and Kelly are going through.
With that in mind, we would ask everyone to send your prayers today to the Pimmel family.
Hitting, biting, yelling and crying …. ahhh steroids, we meet again. Today is Lucy’s last day of steroids this round and it has been rough. Each steroid week is different and this time she demands to watch Sesame Street (if josh or I even hum the tune she yells and signs “again” until we let her watch), and has turned into a wild daredevil, climbing the furniture. Poor Violet has been the recipient of most of the biting, and we have all been slapped more times than we can count! It’s no wonder Violet has started asking questions about Lucy’s treatment like “how long will Lucy be ill? Does Lucy still have leukemia? How long will Lucy have to go to the hospital?” If only she knew how complicated the answer really is! We will meet with Dr. B next week and will have an update on Lucy’s treatment then. Short term, we hope the steroid’s effects wear off over the next few days and will head to clinic for chemo on Thursday.
Although the future of Lucy’s health weighs heavily on our minds and I pray every day that we are making the right decisions for her both big and small, we absolutely find joy in every day. We’ve been having fun this summer!
Lucy’s first bath … age 16 months. Lucy was still in a baby tub before her diagnosis and since then she can only have sponge baths with her central line. EXCEPT with this cool waterproof cover made for central line protection during showering! A generous mom at clinic shared this with us and it worked awesome! Lucy loves to splash and it was so great to let her have fun. Now that we change her broviac dressing ourselves at home we feel comfortable letting her splash. The adhesive on the cover irritated her skin, of course, but it will be worth it once and a while.
It has been a long time since our last post for a good reason – the Bacott sisters are running us ragged! Lucy is becoming more rambunctious and daring every day. Violet is also finally getting to enjoy playing with her sister. For months we scolded her not to even touch Lucy without dousing herself in hand sanitizer, but Lucy has made that point moot by literally running through the house in a blur and doing things that make me cringe like licking the coffee table or trying to eat an old cracker off the floor. Now, I desperately need Violet’s help to keep her sister safe! Lucy got her first bump on the head this week when she tripped while sprinting across the room and hit her forehead on the leg of a chair. I called the Costas Center in a panic as I watched the knot swell up and the incredibly patient nurse on phone duty (Lauren is totally used to my frequent calls for little things by now!) said “just treat her like a normal kid”. Wow, that was nice to hear! Our little responder recovered quickly and has just a slight bruise that is already rapidly disappearing. I really want her to get some hair back so she has at least a little padding … still no signs of fuzz, yet.
Today Lucy had a long day at clinic where she got her monthly antibiotic and then her weekly dose of chemo. For the first time, Violet joined us for this long day, and she was extremely patient. I had no doubt that the Costas Center at Cardinal Glennon is prepared to entertain kids of all ages, but these sisters have both been very jealous about “mommy time” lately so I was bracing myself for meltdowns. Thanks to Frozen on the iPad, Popsicle with Meggie, a visit from Friends of Kids with Cancer, the playroom, and enough snacks to feed an elephant, Violet had a great time.
Lucy is currently doing great. She is actually still sleeping pretty well, only waking once at night which is awesome. She has been eating pretty well too; Dr. B is pleased with her (slow but steady) weight gain. Lucy starts one more week of oral chemo tonight, then next week she will go back up to sedation floor for lumbar puncture, a quick dose of chemo and also begin five days of steroids. It is hard to believe a month has already passed since her last week of the ‘roids. We will treasure our sleep now while we can!
The “trouble sisters” caught in a brief moment of stillness as they catch their breath, I assume. They love this princess tent and Josh absolutely hates it because they bounce around in it like a couple of monkeys! You can barely see Lucy’s head bruise.