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Powered by LifeTypeThe appointment with the NF1 doctor went well. One of her oncology doctors was also there, the one who works closely in the NF1 world. Jon didn't remember meeting the NF1 doctor, but it was right at the very beginning, during Grace's first hospital stay, when she was diagnosed. So, much to be thankful for from that visit. They are sure that her fracture is from steriod weakening and not NF1. The kind of bone issues that NF1 causes is not evident in her, and it would be by now. Several other NF1 symptoms are also ruled out for the same reason.
But there is still the possibility of developing brain tumors. This is why she is scheduled for eye exams every six months for the rest of her life. They are working on a trial of oral chemo that looks promising. Because there is no sign of brain/retinal tumor in Grace now, that study will be finished before she would even need it. And we pray that she never will! I think they said she'll get a brain scan every year, but they did not do one this time. She had an eye exam in June and will have one next month. And they asked about her cognitive development. The tumors really affect that, so we are reassured by her development there. Jon asked me to look up milestones for three-year-olds and the only things she is behind in are some gross motor skills like jumping/hopping and riding a tricycle. (She tried riding a tricycle the other day, and her legs did not reach the pedals!) I had already planned on taking her to the playground more often, but that now has to wait while her leg finishes helaing. That is on the mend, she does not limp much at all anymore. She still has some flareups occasionally, but the curve is dampening.
Jon and Grace are off to Boston for her bone marrow aspirate. He just spent all day yesterday at the polls, literally, from 6:30am-11pm. And they had to leave at 5:45 this morning. Prayers for alertness while driving. Bless her marrow that it's 100% Faith's. Bless the procedure and anesthesia. Bless our little Amazing Grapey Grace.
Fun quotes from the last weeks:
9/7/24 - Nothing like older brothers to help you develop cognition. When she was in an "answer everything with 'no'" mood: "Grace, are you dumb?" "No" "Are you not dumb?" "Not dumb."
9/11/24 - "Mommy, all done eat my eggs. Please wash it, my fork."
9/11/24 - "Hope 'wake now. Not sleeping."
10/26/24 - Nathaniel and I were talking about when Grace can shower and bathe now that her central line is out. Grace then exclaimed, "Swim! Me swim! Maggie P! You come. Hope come."
Monday, 11/4/24: The kids were doing a survey for fun. "What's your first name?" "Grace" "What's your middle initial?" [they helped her say 'Victoria' and that it starts with V] "What's your full name?" "Amazing Grapey Grace!!"
Line 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.)
I had to go calculate the day since we no longer count the days like that any more - it has been great to have less medical stuff going on these days, and we get more comments about her being "so cute" in the grocery stores and the soccer games, etc.
Her hair is growing in, and I don't think I've heard her referred to as a boy in a while (for a while she just looked like she had a really short haircut, but it is growing out more). She discovered the 18 month clothes bin in the attic the other day and has been wearing some onesies, since she mostly still fits into them. She'll turn three next month.
We continue to do weekly dressing changes - we had a full day yesterday and so she fell asleep during the change - it is hard to imagine kids screaming through it, but we are certainly blessed to not have that problem. She happily puts on her mask and then holds her hands above her head until it is done.
Faith's soccer team is having a leukemia awareness game in honor of her and Grace and our family.
September 11, 2024 4:00pm
Hillsboro-Deering High School soccer field
It would be great to see any of you who can come!
So sorry I left you hanging. Grace and I went back to Dartmouth the next Friday. They did her bloodwork and the creatinine was just fine, so they were reassured and sent us home without further testing. She has been doing well.
Faith has had two soccer games now, and is also doing well. Thank you for your continued prayers!
Jon and Grace just got back from a very long clinic visit at Darmouth. Jon did not have time to tell me much, since he had to catch up on work.
Grace's creatinine level was high, so they are concerned about her kidney function. They double-checked that number and it was still high. As far as I can see from the lab results, the other related numbers look fine. Grace is scheduled to go in on Friday for a kidney ultrasound.
In the realm of good news, Faith is improving steadily and has been able to participate in soccer.
Hopefully, more detailed updates soon.
We were so relieved and happy to have Jon and Grace with us for Family Camp.
Daley summer life has been super full as usual. Jon got special permission for Grace to ride the Summerfest carousel all by herself (and he wiped the horse down with hospital disinfectant wipes.)
We went to Connecticut to see extended family (big family pictures have yet to be uploaded from our "real" camera.) Grace is not allowed to get her central line wet, so at the suggestion of a nurse, we wrapped her up in plastic wrap so that she could walk the beach and step in the shallow water. Here she is, all wrapped up, with her bathing suit on top. (Sweet pics of her and Jon on the beach are on the other camera.)
Overall, she is doing well. Her numbers are looking good. However, we are still concerned with diaper contents. What is the right level of softness? What indicates a problem and what is normal? There is such a range of normal. What is her new normal? Bananas affect it; summer fruit affects it. Medications affect it. We are keeping her off dairy for now to eliminate that aspect of the question.
Give thanks to God for her progress and pray that we can have wisdom to know when to intervene. She also needs to eat and drink more by mouth. Sometimes, I am impressed by the amount she consumes, and sometimes she still doesn't eat much.
Faith's back, last I heard, was doing ok at Csehy (music camp.) She still has healing to do and appointments to go to, and soccer to play! Her team is working on getting special jerseys in the orange color of Leukemia awareness and they are working on a plan to sell Victory tshirts at soccer games. They are inspired by Faith's dedication and sacrifice and wanted to do something for her and Grace and us!
Grace is all set to leave in a few hours - just waiting on paperwork.
Her potassium is a little high, but they had taken off her potassium-lowering drug, and she has been eating 4-5 bananas a day, so they expect she will be fine once she goes back on her regular meds and has more choices of regular food.
She has been eating English muffins (and the nurses are impressed that she can put the jelly on herself - I'm not sure where that skill falls on the normal development chart to know if that is impressive or not) and French toast as well, but her primary diet has been bananas.
Her stools have been the best they have in a long time, and she even had negative results for blood, which hasn't happened in our memory.
Heather is better at writing the updates than I am, though I've been intending to write a few since we've been back in the hospital.
She has been doing quite well the last few days and much more cheery. Nothing like a colonoscopy to cheer you up I guess. I hadn't been paying attention (that they hadn't given her any prep drink stuff) before the colonoscopy, but they had decided to do just a sigmoidoscopy instead of a full one, so I was surprised by that when discussing the plans with the GI proceduralist just before getting it done. He said he would go as far as safe, and went in 20-25 cm, which was bigger than he had gestured with his hands, but I assume is what he was planning on doing from the start, but was just being as nice as he could be to me.
The endoscopy (from the top) was clear, and I was surprised to learn that they started the procedure without intubating her at all, but she had some trouble breathing on her own and so stopped and intubated (using the correct size tube - he was listening - I told about 6 people that day who all said they would get the message to the right person; sometimes they previously have not listened to me, or paid attention to her chart, and used a larger tube than fits well for Grace).
We are still waiting on some viral reports that should come back tomorrow, but she has been officially diagnosed with GVHD*, despite all of the oncology providers thinking that wasn't going to be the case and all of the non-oncology providers assuming it would be the issue, so that is curious to me. If you read the symptoms at the previous link, you'll see that she doesn't have most of the symptoms, and so I think they are used to seeing more symptoms so figured it was something else.
Screenshot of a video call on Thursday:
Friday's procedures went well. They got plenty of marrow for their tests. The endoscopy showed the esophagus healthy. The sigmoidoscopy showed her colon quite inflamed. The surgeon could not tell the cause, but was confident that the pathologist would be able to. She woke up fine, though with some cardiac irregularities that settled themselves.
A dear friend visited all day Saturday, and this is what Grace looked like on a video call that evening:
She was eating a bagel, laughing at her brothers, talking, playing.
They are now just waiting for the colon biopsy results. There's some conflict of advice between GI and nutrition. Hopefully, with results there will be a clear path for what to do with her diet.
The rest of us went to an On Belay family activity day on Saturday, which was nice. It's been a good program for the kids these last several months. www.on-belay.org
However, Faith was in pain by lunch and could not participate in the high-climbing activities. She was really bummed about that.
Sorry about the orientation, I can't fix it on my phone.
Today is our 23rd wedding anniversary. Plenty of ups and downs for our family in those years!