Tales of a Broken Arm

Emma started out with a bright pink cast after she broke her arm in April. It was cute and she had people sign it. After a few days, it started to annoy her.

 It was the night of the hockey game when we were getting ready to go that Emma slipped her cast off. The next day we got a replacement cast - this time a purple cast that went up over Emma's elbow so that she could not get it off.

Also, a picture of Emma's Bricks of Hope. So many cancer families start nonprofits in honor of their children. Bricks of Hope collects Lego and Mega Block and other building brick toys each year, and they donate them to the cancer patients. Emma got a box big enough to share with her sister and brothers. In this photo, the castle is a hospital and all the little lego people are constructed without their hair... because obviously they have cancer. The girls' idea, not mine.

Hey look, a great photo of three of my kids. After church on Easter. Emma in cast and with Kitty Cat ears. Yes that's how she went to church. This was just about her first showing after a winter of not attending much. It sure is nice to go all together again. By nice, of course, I don't mean relaxing.

Emma's picture for a slideshow supporting a hike for cancer.

And just after the cast came off her arm. Hey-Presto! All the best of the broken arm photo coverage.

Grizz and the Mascots

This goes back to April, which I said was uneventful; but here are pictures of an event.

Perhaps this post should be about Bumble and the Mascots since it was the Bee in the picture. But it was Grizzbee's game.

Let me explain. The Mascot Miracles Foundation is a nonprofit organization that is run by professional, collegiate, and corporate mascots. They do stuff for kids with cancer. They showed up at BMX races and spotlit the cancer kids. They hold charity events and they fundraise to help kids and families.

They have been pallbearers more than once. 

Grizzbee is Mascot for the Utah Grizzlies hockey team, and he invited all his best friends to the last home game. That includes all his best cancer buddies and all his mascot buddies. The mascots did half time shenanigans and during the game they were visible.

Bumble came by our section and Lizzy and Emma went to the stairs to give him 5 and get a picture; but because it was during play, the usher sent us back to our seats. Wanting to be good guests, we shuffled back; but Emma was very sad.

Bumble went down several rows, came into the section, then climbed over empty chairs and worked his way up through the section to get to Emma.
He also gave Tommy a big soft Mascot kiss on the head. Either that or tried to eat him... you look at the picture and judge.

And here's Emma later that night, sporting her rub on tatoo. Generally I am not a huge fan of the temporary tattoos; but this one is cool. Not pretty; but then again, cancer isn't pretty.

We will run into mascots more over the summer; they will be at some events that we don't want to miss.

Chemo Makes Her Sick

When we started out, the most expensive prescription we brought home was zofran, to combat nausea. I was a little irritated that we had a $215 bottle of medication that she didn't need and wasn't using.

Consolidation features mercaptopurine (MP-6), which is a chemotherapy that is a bit different from the varieties we had during induction. We are now using the zofran and I'm grateful to have this expensive drug in my chemo box.

As we know already, we were in the ER Monday and Tuesday night. Thursday I took our 2-year old boy to Primary Children's for a follow-up on his cataract and scheduled an exam under anesthesia for him right before Christmas.

Friday, my fourth trip to Primaries in a week, we met another Oncologist, Jennifer A Wright. Hehe. That's my sister's name. Emma's ANC keeps getting better and Emma was cleared to go to church. [YIPEE]

Her nearly-weekly lumbar puncture (LP) is a lot like an epidural. Kids don't like needles in their backs and are prone to scream and squirm, so to solve this difficulty, they do LPs under light anesthesia. I left the procedure room with her sleeping and sat down in the hall and - for the first time really since all this started - had a good sobbing cry.

Emma sailed through like a rock star. The anesthesia was a bit heavier than usual and she was pretty doped for the rest of the day. Also, we are working on balancing the laxative; is it balanced if you have both constipation and diarrhea at once? Ah what a miracle it is that human digestive systems usually just work.

Largely, though, she is doing well and usually in good spirits. I love to see that girl smile. Maybe it's with every kid, but the doctors and nurses act like they won some bet or contest to get to see Emma. Doug, Emma's primary oncologist, got after Dr. Wright for snatching his Emma exam when he was getting out of a meeting. Even though it may be part of their approach, I feel like Emma is a favorite for her smiles and giggles.

Blankets

When Tommy had his first surgery at Primary Childrens last summer, they gave hime a hand-crocheted blanket. We snuggled him up in that and brought him home with it. After his second surgery, there was  store-bought fleece blanket, again, donated.

Emma had a couple blankets waiting on her bed when we checked in. Of course, the hospital blankets, but also a lovely pink fleece, and my favorite that disappeared, perhaps to the laundry with a linen change. That one was a tied quilt, not pieced, but cute animals on top, batting inside, flannel on bottom, and bound beautifully. She scored a pink monkey fleece blanket during her echocardiogram. When we went to church in the hospital auditorium, she got a fabulous big fleece blanket with a patch sewn on from he branch that provides church meetings.

I don't know who makes and donates blankets to the hospital; but I love them. They are so personal and comforting. They are so welcome.

Jim and Tina, friends of mine from before my marriage, sent Emma two beautiful pieced toddler quilts and my neighbor, Robyn, made a quilt, too, just for Emma.

They are so friendly and personal, like a hug that you can hold on to again and again. Emma has a couple on her bed, one on the couch, one in the family room. She moves them and rotates them and knows which are in the laundry.

What an incredibly thoughtful thing is a blanket. To Tina, Robyn, and the PCMC blanket donors, thank you so much. 

Positive

I like to stay positive and share the amazing great inspiring stories, because there are a lot. An overwhelming amount of kindness is directed at us.

Even so, this is a bit hard. We are struggling to find a balance for things that we were not good at: teaching the kids chores, fitting in music practice, individual time for the kids, a controlled budget, daily 20 minutes of reading and the addition facts that we gotta know in second grade, potty training, personal study time, yardwork... These are things that I was struggling to balance and take care of consistently.

Life, in short, is not simple. Parenting takes a lot of focus and effort.

Throw in a medium grade crisis, and my plates stop spinning.

I call Leukemia a medium-grade crisis. It has a cure, and we will very likely get that cure. We don't have a lifetime chronic thing, and we're probably going to get out without having to bury any children. It isn't a huge, giant, life-changing crisis. My heart weeps for the parents and spouses that get those, and for the people who live through them.

For those that don't know us very well, Leukemia is our third medium-grade crisis. In 2011 Lizzy had heart surgery for a congenital heart defect. It was corrected with surgery and she's good to go for life. In 2012 Tommy, at one year old, had a cataract removed from his right eye and his doctors say we averted certain blindness in that eye.

These are examples of medium-grade crises. At the time they throw our plans out of balance; but we lean on friends, we pray, we take one day at a time, and we get through. Hopefully a bit stronger and more able to handle the next bump in our road.

We can do hard things. We can figure out what things are most important, and we can take the daily steps to meet our goals. We can adjust for events out of our control and we can take a moment to scream or cry and then get back to winning.

I can take joy in the times that Emma needs a snuggle. I can let the excersise be less important and my lap can have room for more munchkins to get some mommy attention. We can gratefully accept the help that we need. We can see the hand of God in the actions of those who are holding us up.

We have so much to be grateful for. I have so many more stories of goodness that have yet to be written, and some that I won't share publicly. We are going to get through. I am sure. I am positive.