The bottom line is that she is doing great. Becca has been attending first grade and not missing much school at all, she is participating in the DramaKids program after school and has started cheerleading for Upward again, she is making friends, and she is working through some of her fears and frustrations. We have now been moved to every other month appointments in the clinic at Children's, so that means less lab draws, and she did a fabulous job with the December one. In addition, Becca is on NO MEDICATIONS, which I did not think would be possible for a long time, let alone only a year and a half post-transplant.
Lily has been participating in her school chorus this year, and she is becoming quite the super reader and arts and crafts aficionado. Yes... she has a Pinterest account :). Our family has really enjoyed the fall and early winter, celebrating the change in weather and doing the traditional things we do at this time of year. Last year we were in Florida for Christmas, so it was fabulous to spend time with both sides of the family celebrating the holidays. My brother and his family were in town for Christmas for the first time in over five years, and the cousins had a blast playing together all day (see pics below for a few of the many dress-up themes).
We have had additions to our family this year, too. Back in September, we were so fortunate to be able to meet Becca's life-saving bone marrow donor Matthew, as well as his mother. During the Thanksgiving break, we had the pleasure of getting to know Matthew's father and girlfriend Courtney, and earlier this week, we were able to spend time "on wheels" with Matthew and Courtney while roller skating. These wonderful people are now part of our family, and we have so enjoyed getting to know them. The bond that Becca and Matthew share is hard to describe but clearly visible, and I'm sure it will develop even more over time.
I feel so fortunate to have had this fall and winter time with my family at home, when we were mostly healthy. Lily had a small bout with a cough and fever that almost turned into pneumonia in late October, but other than that, we had been pretty healthy until just before winter break when Becca had a stomach bug and Ethan picked up some type of virus. Becca's lab results were a little wonky, as they were drawn at this time, but the docs had no concerns. Luckily, she waited until the morning after Christmas to wake up with a croupy cough (probably picked up from the tail end of Ethan's virus). If you haven't heard one before, it is one of the most terrifying sounds, especially when you are sound asleep and your child is immunocompromised. You just get a feeling in the pit of your stomach of what is to come (and it's not good). After taking her outside for some cold air and then using the inhaler, she calmed down, and her coughing lessened. The next day, though, Becca woke up and told me that her hips and legs hurt and that she has felt this way before... a long time ago. Talk about feeling it in the pit of my stomach! I flashed back to five years ago and was panicked for most of the next couple of days until she stopped mentioning the soreness in her legs. She had a fever (never above 99.6), but we had to miss out on a couple of fun events to keep her from getting others sick. Though Becca still has a juicy cough, she is back to full-energy and playing like crazy.
To catch you up, a few pictures from the last couple of months...
Shaw Pumpkin Farm, a yearly tradition
Halloween Party at TDF
Heading out to the barn at Nanna B's and Poppa's farm
Chefs Ricky and Lily
Hat girls (Nanna B made hats for all the girls)
Ward grandkids, together at Christmas
Flapper Becca doing the princess wave
Lily in her mermaid tail
Christmas morning bedhead
Prisoner Lily and pirate Ricky
Great Nana and the girls at Lily's chorus performance at the Lodge
Great Papa and the girls at the show, too
Great Papa and Great Nana and their favorite oldest granddaughter :)
Becca and Emma on wheels
Becca and Matthew (don't they look like siblings?!)
Awwwww... love this one!
Kniskern girls bundled up and ready to sled
My sledding Becca
Thank you for the continuing prayers for our family... they are what have helped get us through the last five plus years. I'd like to request some prayers and positive thoughts for a few other little ones now. In the past month and a half, I have referred three different families to The Dragonfly Foundation (a WONDERFUL organization that provides comfort and joy to kids and young adults enduring cancer and bone marrow transplants - www.thedragonflyfoundation.org). While I am thankful for this organization and the fact that they will be able to provide some comfort to these new dragonflies and their families, I am so sad that their families are enduring such horrible things. Please send some prayers for healing up for 7-month-old "M" (diagnosed with infantile fibrosarcoma in late November and in the midst of six months of chemotherapy and testing), preschooler "S" (diagnosed with Leukemia in the beginning of December), and eleven-year-old "M" (diagnosed with Leukemia right before Christmas and currently inpatient at CCHMC). My thoughts have been with each of them throughout this holiday season, and I hope you'll join me in praying that the treatments kill the cancer while keeping side effects minimal.
Many blessings to you and your family, and I hope that 2014 is a year filled with love, happiness, and health!