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Powered by LifeTypeFaith'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.
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!
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.
Or: How This Mom Started Playing Minecraft
They say that a good way to show love is to take an interset in what the other person is interested in, even if you wouldn't care about it on your own.
I'm a busy mom and wife of an entrepreneur, right? I don't have time for video games. I have a house to clean, school to teach, dinners to make, diapers to change, invoices to prepare, bills to pay, laundry to wash ... blah, blah, blah.
But one day, my little Joy asked me to try Minecraft. All my kids love it. They play nearly every day, they collaborate, they watch each other, they coach and help each other. I have already put in the effort to be interested in their creations. But there is only so far you can go with intelligent questions without jumping in yourself.
I started in creative and peaceful. Joy and Faith taught me some things, and my generated world was interesting to explore.
Then Jonathan asked me to try survival and coached me through the steps. (Though I still insisted on peaceful at first.)
It has been fun to play around and discover things, build a house to my own liking, raise a rainbow flock of sheep, etc.
My questions now come from experience. Jonathan remarked, "It's so fun that you are actually interested in Minecraft now!" How to connect to your pre-teen? Maybe try Minecraft.
On vacation, I let them and myself do extra. We discovered the collaboration of multiplayer over wifi. We can be a team. I also see the different personalities of my children coming out. Each one approaches the game differently. Jonathan works for speed and efficiency, mining carefully in the right places. Noah thinks mining is mind-numbingly boring and avoids it when he can, preferring to get his treasure by killing monsters. Faith is matter-of-fact, cautious and deliberate. Joy makes beautiful, patterned structures. Jeremiah likes digging and building, digging and building, digging and building (and he is getting more deliberate, too.)
I also discovered the phenomenon that some other part of my brain works on real-life problems while I play. In a conversation with my sister, she remarked that I had been doing a lot of thinking. I replied that I thought I was just doing a lot of Minecraft. But she's convinced they're related. And that gives me a deeper appreciation for Jon's game playing as well.
In Minecraft, my kids are the teachers (even my five-year-old: "Mom... your inventory is full, that's why you can't pick that up.") I am the one learning, making novice mistakes, disregarding wise advice to my peril, and taking advice to my advantage. This is fun for them and it's fun for me. I'm glad I decided to take the plunge.
And now excuse me. I have to go shear a yellow sheep.
6/17 - Nathaniel gets three molars at once. upper left, lower left, lower right. The upper right made its appearance 6/22.
6/21 - Haircut day for some. (It's pretty hard to get everyone in one day.) I cut Noah's hair, and some of Jeremiah's (he got impatient and I decided it was better to stop than to get myself impatient.) Faith asked if she could help me with Joy's hair. She did a very careful job. I had her start on the bangs conservatively and when it was a nice, even job, I let her do the next centimeter. After that, she trimmed the rest of Joy's hair - to that perfect length that really sets off Joy's adorable face - right above shoulder length. I really only had minimal fixing up to do. So then she asked if she could to mine! This one was one hundred percent Faith, nobody needed to do any fixing up. I had not had a haircut since just before Joy was born (that makes it five and a half years!). I love my new haircut! It is much more manageable, but still long, just about 4-6 inches shorter.
6/24 - Jeremiah and Joy came upstairs with tape all over their faces and fingers. Jeremiah explained, "Armor! We goin' battling!"
4/3 - I said to Jeremiah, "Your shoes are on the wrong feet, sweetie." He replied, "I not 'sweetie'. Joy is 'sweetie'."
4/10 - Joy and I spent a grueling but satisfactory three hours earning our yellow and orange belts, respectively.
4/14 - Jeremiah, "It will be so so so fun if I get lots of drums toys for Christmas." [Note from Mom: maybe not so fun for me.]
4/15 - Noah, "I am King Excalibur, and my sword is Arthur!"
4/15 - We were just about to leave to go to some friends' house for dinner when Faith came runnung inside, "Mom! Nathaniel's bleeding!" I grabbed a kleenex and ran down the side porch stairs. There is blood all over his shirt, pants, shoes, and the sidewalk. After a quick check from toes on up, I discovered that the cut is in between his eyes (a little higher and to his left than Jeremiah's similar cut.) I clamped on the kleenex, scooped him up and brought him to the kitchen sink. By that time, Daddy had been alerted also and he came to the kitchen to check it out. When I took the kleenex off, it had already stopped bleeding, and we could tell that, though significant, it was not as bad as Jeremiah's had been and we figured it probably did not need stitches. After we took off his clothes and cleaned up the blood, Jon applied a butterfly closure with a couple of regular bandaids on top. Nathaniel was really good about the whole thing. Only 15 minutes later than we meant to be, we went to our friends' house for dinner. The wound did ooze blood that evening, but it was fine in the morning. He has amazingly not been picking at it. I hope that continues even as it starts to itch. We don't even know exactly how it happened. The kids were playing in the driveway and no one actually saw him fall, or what he fell on.
4/16 - Jeremiah counted to seven correctly on his own.
4/16 - I have been doing knee pushups ever since starting karate. This year, I made a goal of doing ten pushups every day in February as a kickstart to the habit of daily pushups. After my karate test, I figured I could up the count to 20 a day. But, partly due to Jon's encouragement, I gave full pushups a try. On Friday, I did it! Ten full pushups! And again yesterday, and I'll do it again today. Very exciting and motivating. Proof that a little can grow with consistent work!
Joy can tie her shoes! She got some sparkly Hello Kitty shoes on her birthday shopping trip with Grammy, and it only took a couple of weeks for her to get it consistently. She's still slower than the rest of us, but she no longer needs help.
3/4 - "It's like somebody chewing on a guitar string lengthwise." Jonathan was commenting on a squeaky artichoke.
3/11 - Faith lost lower left 2nd incisor. (R one was a couple of days earlier)
3/12 - Nathaniel was interested in the potty and went a couple of times. I have not been consistent helping him be on it, though.
Jeremiah sings "Butterfly Amazing Grace" and asks me to, also. I didn't know what he meant when he first asked me, so I just sang "butterfly amazing grace" to the tune of amazing grace, over and over, and he liked it.
3/13 - NPD "here ya go" giving Jeremiah a piece of paper. (sounds like hah-ya-doh)
3/15 - Joy can wink both eyes.
3/22 - Jeremiah asked for "some of those green berries." He meant grapes.
3/22 - We were talking about how pencils keep disappearing from our house. Noah said, "The Greeks would say the pencil gods were mad at us."
3/23 - Nathaniel can run.
3/30 - Overheard, Joy explaining to Jeremiah, "'Obstacles' means 'stuff in your way'."
3/31 - Nathaniel pointed to a raisin and said, "Ray-rih". Jonathan asked, to be sure he heard right, "You want raisins?" Nathaniel replied, "Yeah." And he also said "more" later.
On Saturday, March 26th, Jonathan, Faith, Joy and I participated in our first karate tournament. The whole family rose bright and early so we could drive the two hours and 15 minutes to Standish, Maine. This tournament is relatively small, with only about five dojos participating. Each division had two to eight participants, with an average of about four (though I didn't do the math.)
Faith's division, 5-7 year old purple belts, was first. There were six other kids competing with her, including her friend Evelyn from our own dojo. In the sparring category, she lost her first match, so that one ended pretty quickly. But when it came time for forms, that is when her practice and hard work shone. She was confident and crisp in her movements. She remembered everything and performed smoothly. She was first to go, and for whatever reason, they allow the first person to go again if he wishes, so she did it again after all the other kids had gone. She told me later that she almost told them that she had already had her turn, and then realized by how they said it that they knew she had gone already, so she just did it. It was so fun to watch her. And then the judges, not her partial mother, awarded her first place! Evelyn got second place. (More)
1/4 - JPD, breaking off celery stalk, "Wow! Big whacker! Bad guy come in our house, me whack him!"
1/4 - NPD signing "more"
1/5 - Joy, holding necklace, "I made it symmetrical, with yellow in the middle."
1/7 - NPD said, "amen" after we did at dinner. This has happened a few times now.
Jeremiah says, "gacky bame" which means "exactly the same".
1/8 - JPD, "mine toes-es" (and nearly all other plurals end with -es also.)
1/11 - NPD signed "more" and said, "mo"
1/12 - NHD adding up prices quickly at Goodwill
1/13 - Noah called 1/12, "one dozenth"
1/14 - Faith progressing quickly in skiing. Her instructor said she should go to level 5 next lesson.
1/14 - NPD, wandering around, looking this way and that, "Where? Where? Where? ..."
1/15 - JPD, "2, 8, 9, 1, buckle my shoe!"
1/16 - This week, Nathaniel has started making this whine that sounds just like a power router digging into wood.
1/17 - Joy, "knock knock." "who's there?" "carrot" "carrot who?" "carrot you" "carrot who??" "carrot you and your mother!"
1/18 - JPD balance on one foot, spinning also
Also, knee...knee...knee...knee...knee...carrot...carrot you glad I didn't say knee again?"
1/20 - Jeremiah, "Does this one [points to his left nipple] have juice, Mommy?"
Jeremiah, "Sho yucky"
1/24 - NPD can stack two jars.
1/28 – Jeremiah, "I like it! Thank you, Mom, making dinner."
1/28 – Nathaniel said "ba" as he pointed to a ping-pong ball
1/30 – Nathaniel might be a lefty too. Still up in the air, though.
1/31 – Jeremiah, "Potty in your closet, Mom." Me, "What? There's a potty in my closet?" Jeremiah, "Yeah." Me, "No, there isn't." Jeremiah, grinning, "Me so goofy, Mommy!"
1/31 – Jeremiah knows how to get to the bank. We went on a very long walk. He directed where we would go. At the front door of the bank, I showed him the sign that said it was closed on Sunday. So then we went to the back door of the bank. Then we went to the Methodist Church. We checked to see if Mediterrano restaurant was open but it was also closed. We watched two cars getting washed at the gas station. We went down to the other gas station and then up and around the side roads and visited Papa at his house and then we walked home. Later that week, when we visited the bank again, Jeremiah pointed out the sign that said it was open.
11/2 - Jeremiah, "Aunt Prudence gave us this one." perfect grammar
11/3 - Jonathan, "Mom, did you know that if you take the 'c' out of 'record' and add 'er' at the end, it becomes 'reorder'?"
11/3 - Jeremiah, walking backwards with finger in front of his face, "Me try to pick [scab], but me go 'way."
11/3 - Nathaniel recognizes his name. Jeremiah calls from the other room, "Nan-el!". He turns and crawls to Jeremiah.
11/3 - Nathaniel says, "Guh-guh-guh"
11/5 - NPD sticks his hand in oatmeal fresh from microwave. I rushed him to the sink for cold water right away, but blisters still formed in between fingers and on his wrist.
11/5 - NPD upper left 2nd incisor
Noah's favorite hobby - opening presents (More)
