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Powered by LifeTypeLine removal surgery was successful. She did great for the IV.
She came out of anesthesia quickly and they were home by 4:30. It is strange to her to have her line out. But next week she'll be able to have her first bath in a year! She is excited about that.
After she got home, Grace opened her birthday joy jar.
Grace has had a fun birthday overall, with balloons and presents and blowing out the candles.
But tonight, during her line flush, the white side busted a hole through, up above the clamp, near the Y . We did our best with a paper clip clamp, but Jon took Grace to the fire station to put on an umbilical cord clamp.
That worked nicely, but her doctors want her on antibiotics right away in case it got contaminated. So Jon and Grace are headed to Dartmouth now (10pm.) They will also be taking the whole line out either tonight or tomorrow morning. That exciting milestone was scheduled for two weeks from now, but she gets it early for her birthday.
Please pray for safe travel and no infections and a successful procedure.
Grace woke up Friday morning wanting to eat and drink, and she has kept everything down. There is a cold running around our house, which I thought she was getting last night, but she seems ok this morning. However, she did wake up with her nose tube pulled out again. So we are trying out the day to see how much she can eat and drink without it. She took her morning meds like a champ. In addition, she has some itchiness on her trunk that may be weather related or may be gvhd related. We have cortisone cream for that and the doctors are keeping an eye on it.
Next week is Grace's third birthday, for which we are exceptionally grateful.
I know that there are a lot of people out there who love Grace and would probably like to do something for her birthday. She has all the physical things she could need or want, so prayers would be the number one birthday present we can ask for. For those who feel led to provide something physical, I thought I'd share a list of organizations that have helped us and Grace through this last year or so. People have been so generous to us. Most of these organizations provide their services to cancer kids and their families for free.
On Belay organizes physical activities that are free for kids impacted by a loved one's cancer. Our kids have gone indoor climbing, ropes course climbing, kayaking, horseback riding, surfing, mountain biking, camping, and hiking. They always have fun and they appreciate the usually unspoken camraderie with kids in similar hard situations. on-belay.org
NEGU Never Ever Give Up. This organization was founded by a girl who had a terminal brain tumor. She wanted to spread joy to her fellows and give a Joy Jar full of goodies to every child diagnosed with cancer. The organization has now grown so that they give Joy Jar subscriptions to the children and their families. Every month, Grace gets a jar with a book, crayons, coloring book, stuffed animal, and other toys. She loves her Joy Jars and is so excited when a new one comes. They also have given us all tshirts, a beach towel, a blanket, a popcorn bowl with popcorn, and numerous other goodies. One month, they included the book Jessie's dad wrote about her life, which was powerful. I certainly cried hard, but it has such a hopeful theme even while dealing with all the hard questions of life, death, and terminal illness in a child. negu.org
David's House I have written about before and our t-shirt fundraiser goes to them. (Update on that coming soon!) We stayed there during Grace's first hospitalization at Dartmouth and for part of her second round of initial chemo. https://davids-house.org/
Luke's fastbreaks: Luke is a childhood cancer survivor. He didn't like how demeaning it was to wear hospital gowns, and so he designed special hospital shirts for pediatric cancer patients. They come in a variety of bright colors with fun designs, and they snap completely apart. You can mix and match fronts and backs if you want, but the really wonderful thing about the snaps is that you can change your shirt even when you have to be connected to a pole for days on end. These were a staple during Grace's Boston hospitalization. https://lukesfastbreaks.org/
1 mission provides the fun on the children's cancer floor. Activities, holiday celebrations, prizes, caregiver meals. They keep the resource room stocked with information and snacks. onemission.org
Childhood Cancer Lifeline, founded in our town by local people. They provide support and love. Grace got a bag of goodies, and we have gotten several gas cards. They also have a summer camp that we were unable to go to because we already have our summers booked full. https://childhoodcancerlifeline.org/
SD Smith, author of the inspiring Green Ember series. When I told him that "My place beside you, my blood for yours..." has new meaning for Faith, Grace, and our family, he set up a live meeting with us and sent us a box of Green Ember goodies. https://sdsmith.com/
Hospitality Homes, provided a lovely apartment in Boston, within walking distance of the hospital, for a significantly reduced rate. https://hosp.org/
CHaD https://childrens.dartmouth-health.org/donate
Boston Children's https://www.childrenshospital.org/
Dana Farber Cancer Institute - their resource room linked us to many of the above. https://www.dana-farber.org/
Please pray for Grace as she has some sort of sickness. Last night, she threw up a lot. She is resting now. She has not had a fever. (Two of the other kids have regular ol' colds.)