Daley Ponderings

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, Boston called to say they'd like to observe Grace over the weekend and to prepare for admission on Friday. They will likely do a colonoscopy and maybe even an endoscopy. (And Dartmouth suggested they get some bone marrow while she's sedated.)

She threw up her NG tube this morning and so Jon took her to Dartmouth. They were able to do her regular appointment stuff so we don't have to go in tomorrow. It was a more traumatic NG tube placement than the other two times, and their tape is not as good.

We have been giving her zofran the last few days. Her appetite has been practically nil. There's definitely something going on. It's not the typical GVHD symptoms, but they haven't ruled it out yet. There might be an NF1 related cause; I've done minimal research on that and it's a possibility.

We depend on God to hold us up, so please intercede on our behalf.

When Faith signed up for the donation, she was told to expect one or maybe two days of significant pain, and then a week of pain that should be managed with Tylenol and then no running and jumping for six weeks, even if she felt like it.

She had 3-4 days of significant pain, and has certainly gotten better since the first week, but at more than 4 months, continues to have 2 out of 10 pain 24 hours a day.  And more pain if she exerts herself too hard.

Grace's doctors referred Faith to her primary care, who took some x-rays and referred her to physical therapy.  The x-rays didn't show any fractures.  The physical therapist didn't really know what to do, in that she didn't know anything about bone marrow donation, but asked a bunch of good questions and gave her some exercises to do daily.  She is supposed to go back to her primary care if she is still in pain in a month or two.  We did find on Google that 4% of donors are still in pain at 9 months and 1% are in pain at 12 months, but the cancer doctors said that Faith shouldn't be in that class of donors, since she is so young.  We do wonder if the "hard time" the doctors had when collecting the bone marrow would result in this extra pain, but we don't know.

Faith wants to play soccer in the fall, but if the pain continues, will not be able to.  She would appreciate your prayers as she tries to rest, but also work on getting her body ready for soccer.

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.

Jon and Grace are heading to Boston on Wednesday for her post-day-100 bone marrow aspirate. Prayers appreciated!

May 31, 6:50pm

9 pounds, 11 ounces

22"

All is well, praise the Lord of Hosts!

 

‭Romans 15:13 KJV‬
Now the God of hope fill you with all joy and peace in believing, that ye may abound in hope, through the power of the Holy Ghost.