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Powered by LifeTypeWe 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!
Grace has been on a clear liquid diet until today where she is getting nothing into her stomach until anesthesia at 5:30. She will be getting a complete GI scope and a bone marrow biopsy. Please pray for the anesthesiologist and the surgeons as well as for Grace.
Jon called this morning to say that they will be at the hospital at least until Monday, because the doctors want to observe her as she goes back on feeds. Also, for the results of the biopsies. (I'm assuming intestinal, because the bone marrow takes a week.)
Jon is discouraged and sleep-deprived, and it's not really practical for me to go there because of Hope.
Grace and Jon did have a good day yesterday, playing games, doing crafts, reading books, painting, watching Mary Poppins.
We're holding on here at home, but now will need to prepare for and go to Family Camp without two important members of the family. Hopefully, they will be able to join us soon.
In other news, Noah is 18 today, and to celebrate true adulthood, has a written FAA test and a dentist appointment. 
When Jon and Grace got back from Dartmouth, Jon asked me to take her temperature. He could feel that she was hot, but the thermometer they used at Dartmouth did not register a fever (it was the kind that you hold a centimeter away from the forehead.) My initial armpit reading was 101.8. That means Boston admission. So I had Joy and Nathaniel pack a few more days of clothes for Jon and Grace (our emergency bag in the car only has two days' worth) and Jon got her medicines and his work stuff ready. By the time they left, her armpit temperature was 103.3.
Jon's midnight update included that her fever had gone down to 38.1 (100.8) by the time they arrived at the ER and that she had eaten half a popsicle and smiled for the first time all day. She got all sorts of tests done and abdomen x-rays. So far, according to the portal, she is negative for flu and cold viruses and x-rays show nothing unusual. Her hemoglobin fell significantly, so I expect she got/is getting some blood this morning. At midnight, she had not been admitted yet, but she is in 6 West now.
Here is a sweet photo of her that Joy took last week:
Today is day +133. (Jon updated this post)
Grace has been having belly pain and a lot of mucus in her stool, often with blood as well. We took her off cow's milk again (she had been asking for it instead of almond milk.) We haven't seen much improvement in the last week, and she does complain that her belly hurts and she also has a diaper rash. There is the possibility that this is GVHD (graft vs. host disease) and for the moment we have stopped weaning her cyclosporine. We are waiting for her Dartmouth team to communicate with her Boston team to see what to do.
Please pray for complete gut healing, normal stools, and normal appetite. And wisdom and peace.
Update in the evening: Her magnesium levels continue to be good, so she is going down another milliileter starting today, and this is the last step until she is done. We restarted her Zofran today because she has vomitted some and hard to tell what the cause is. She hasn't been interested in eating that much, but is eating a piece of pizza right now. She has been asking for a lot of cuddling and has been sleeping with Jon on the couch when he works late nights and they have been enjoying that time together. We had a good phone call with one of the Dartmouth doctors today and he heard our concerns and allayed some of them, and is asking some more questions to Boston. He is happy the bleeding in the stool is lower than before stopping dairy, and while getting mucus in the diaper isn't all that uncommon, did agree that if it continues we will need to do something (probably a colonoscopy).
While the Boston doctors said the bone marrow aspirate was reassuring, they did want to do another bone marrow test on July 10th, in response to the results from this one - something about large platelets and investigating that. Her hemoglobin and other blood tests have been rising on their own, which hasn't happened since the transplant, I think, without a transfusion, so that is good news.
This is the day the doctors consider the transplant to be successful.
This doesn't mean that she's not still at risk for a bunch of things. But it does mean that Faith's cells are firmly established in her system and doing their job!
I've been meaning to write an update; I've even gotten started on one (labelled day +90: it's now day +97.) Overall, things have been going well, Grace's numbers coming back satisfactorily.
But then she got a cold. Just runny nose and sneezing. But after her nap, she had a mild fever. Boston wanted us to take her to Dartmouth, but Dartmouth said that if her fever went up, they'd be transferring her to Boston. So Jon decided to take her straight to Boston. (That was Tuesday night.)
They did a plethora of tests and the only positive was rhinovirus. But they wanted to keep an eye out on her for at least 24 hours, so they admitted her. She did get blood overnight, but everything else is looking good. Jon is hoping to come home tomorrow afternoon. She did some painting and lots of games with Daddy. He went over to the Dana Farber resource room to get her more books, since I had only packed her a few.
This is a really short version to get the word out and still get myself to bed relatively on time. Please keep up the prayers. Day +100 is just around the corner, and Jon discussed with the doctors the weaning process for the immunosuppressant drug.
I'm so very thankful that our family has not had any sickness from the time we had COVID at Christmas until now. Please pray that general trend continues and we keep sickness (and hospital visits) away.
As they say, no news is good news. Not much exciting has been going on lately. Grace is eating a fairly regular diet at meals, which has always been pretty small. Yesterday, she drank a lot, which hasn't been common for her, so we give her 600ml of water via her NG tube, 50ml every hour throughout the day. She gets 2 bottles of baby formula 50ml/hour throughout the day, which means she doesn't have to be on the pump at night, which is nice for everyone involved.
We thought she had c-diff last week, as the symptoms returned shortly after getting off the antibiotic, but the test came back negative, and her symptoms have mostly resolved, so perhaps it was just related to a switch from magnesium sulfate to magnesim oxide for a few days due to it being impossible to get from a pharmacy within an hour of us. Heather had to crush up the pills and make a solution herself, which you would have thought a pharmacy could do... But, she is back on her regular magnesium sulfate now, and we just have to remember to schedule and pickup a few medications at the Dana Farber pharmacy when we go for weekly clinic visits.
We are headed home on Monday!
Grace will still have at least one clinic visit a week and depending on the labs that week, might have a second appointment, but we decided that for the sake of our entire family, we need to be home and it is worth driving back and forth as needed.
At some point, we'll transition to some appointments at Dartmouth hospital and some at Dana Farber.
We need to get the prescriptions transferred to Hillsboro and the CVS in Boston isn't making that easy.
We are thankful that Grace has been less nauseous and we've been able to reduce her formula intake down to 16 ounces per day and she is eating more on her own and has steadily been gaining weight.
We need to figure out what "isolation" means for Grace and how to keep her from getting sick, but also not living in a complete bubble.
Her next milestone is the 3 month mark, where if things continue, her transplant will be considered to be successful, though there is still the possibility for graft vs host disease until she is off the immunosuppressant drugs.
We went back to the clinic in the late morning after Grace threw up her NG tube. She did manage to take her meds by mouth that morning, but she doesn't really like it. They had tested her stool when she had so much diarrhea at her appointment the day before and it did come back positive for C. diff. So she is on antibiotics for that now, but her symptoms are better. We are still struggling to find the balance between real food and formula feeds, and getting enough fluids into her. Some days she eats and drinks a lot. Some days not very much.
Jeremiah was with us for a few days, and he and Grace had lots of fun silly times together. On Friday, Jon drove with Jeremiah up to Maine for the 2024 Daley vacation. That night, we did a video call and said hi to people and Faith gave us a tour of the house. Grace was very sleepy, so she didn't interact much. Saturday, I took her for a walk and found a nice park. It was also a beautiful day. That afternoon, Jon called to say that Faith's phone had caught on her pocket on the way out as she was going to take a picture of them on the WIggly Bridge. Her phone splashed into the water and was irretrieveable. But the rest of the Daley vacation went smoothly. Jonathan said it was the most stress-free vacation in years and it was good.
Grace has started being aware of and interested in the baby in my tummy. She likes to feel my belly for feet and Saturday she told me that she had a baby in her tummy!
Jon came back to Boston Saturday night. We switched off Easter services the next morning. I went to Park Street at 9am and it was glorious! Then I met Jon at the hospital to switch off and he played guitar for the service there.
After Grace's dressing change (which is definitely nice to do with two people) I headed up to Maine. It was great to hang out with the kids again and some of the extended family. The cousins played hide and seek pretty much the whole time they were at the house. It was a great big old house for that.
I drove to Hillsboro after the Daley vacation. Again, it was good to be with the kids and I long for the time we can be all together again. I'm definitely quite physically tired. When some people came over on Tuesday to help they said I sure looked tired and made sure I went back upstairs to take a nap.
Joy and I came back to Boston today, and arrived just in time to pick Jon and Grace up from the clinic. Grace's electrolytes are not settled and so they want us to come into clinic twice a week. Her head doctor is away for a few days, so we have not gotten an official answer yet about going home. We think she's stable enough that we can be further away, and think it is worth driving into Boston twice a week (once for each of us) to have our whole family together at home. But we don't have official approval yet.
At Jon's prompting, Grace announced to us that the baby in her tummy is a boy. Then she and Joy had a hilarious argument about who is in my tummy - Grace, "boy!" Joy, "girl!" etc. for quite a long time. Even when Jon said that was enough talking about it, Grace pointed at my tummy and made knowing eyes at Joy. It was so funny!
Hopefully tomorrow is a laid-back day for us. Please pray that Grace can consistently eat a lot of calories by mouth and also fluids, so that her electrolytes are balanced and she can get off the NG tube soon. Also that we can go home! And get sufficient rest. And for the kids at home who really miss their parents and sister.