Sunday, April 27, 2008

We Need To FIGHT!

The past few weeks I have been struggling to figure out how to express something that's been eating at me.

Children shouldn't get cancer.

We shouldn't have to watch our children suffer from this awful disease. Watching Matt fight, always with a smile and a positive attitude, is the most heart wrenching, devastating experience that I could have ever imagined. Listening to his childlike faith is heartbreaking. He told me the other day that he was glad we had found his tumors. Now that the doctors were taking care of him, as long as he followed their instructions, his tumors would go away and he would be healthy again. How do you explain to a sweet nine year old boy that the tumors will likely not go away, no matter how careful he is, and no matter how good the doctors are? How do your discuss your child's own human mortality and frailty on such a personal level? I am prepared to discuss with my children the fact that everyone will die someday, but how do you talk about this fact with a child who has a life-threatening illness? I believe in miracles, and we pray for one daily. People can live for a long time with stable, low grade brain tumors. But chemotherapy and radiation are not going to completely get rid of Matts cancer. He will be monitored yearly (at least) for the rest of his life.

However, Matt is one of the lucky ones. He has a chance......

When I joined this strange pediatric brain tumor world, I learned of the grand-daddy of all pediatric brain tumors, the diffuse intrinsic pontine glioma or DIPG. Children diagnosed with this, the most deadly pediatric brain cancer, usually don't live longer than 18 months - and it's 18 months of watching your child suffer horribly and deteriorate before your eyes. This video was made by a mother, Christine, about her daughter, Alicia. Christina has started a foundation, you can check our her blog here, and her foundation, onemoreday, here. This video is very difficult to watch, but I believe it is important because awareness is the first step towards a cure.

There is a darling little girl that some of you here in Utah may have heard about on KSL. Her name is Sadie and she has a DIPG. The story on the news piqued my interest, as my ears perk up at the words 'brain tumor'. I went to her website and just crumbled when I heard what her diagnoses is. My heart aches for this family and for the year ahead of them. Of course everyone knows that brain tumors are awful. However, I had no idea exactly how awful they could be. Finding a cure for DIPG could likely translate into cures for many other types of brain cancers. Please help in any way you can. Prayers are wonderful. Donations are also wonderful - much research has yet to be done on pediatric brain tumors! If you are looking for a worthy cause, it's hard to imagine one more profound than this.


Friday, April 25, 2008

Round 1 - COMPLETE!

On Wednesday, Matt and I made our last treck to Salt Lake for this round of chemotherapy. He had his 2nd 'push' of Vincristine (meaning, they push it through his line - so it's IV rather than oral). Each time we go to the Hem/Onc clinic, I am startled how someone so sick can look so healthy (especially compared to many of the other children)! He seemed particularly well Wednesday and was just kicked back, playing gameboy when the doctor came over to chat while the nurse administered the chemo.

Now we just wait for side effects! Several weeks ago, the first time Matt received this medication, he had some pretty severe jaw pain and some drooping of his eyelids. Luckily, the side effects were short lived. He needed IV fluids for a few days - the jaw pain made it difficult to eat or drink, but the Monday after his infusion he felt fine again. Vincristine is nasty, toxic, stuff - no wonder it kills cancer! Matt's platelets have started dropping and were at a 45 - he needs a transfusion at 25. Everything else looked pretty good, though. His ANC was still in the normal range, but had dropped pretty dramatically from where he started.

I'm quite anxious for the next round. The first round is always the easiest. It takes 2 or 3 rounds before you get a sense of how the child will handle things. We go back on the 6th of May to start this whole adventure over again. Then, the first part of June will be MRI time again!


Friday, April 04, 2008


Today at our sing-a-long, I made caramel brownies and also a chicken salad that my mom served in croissants. The recipes were requested, so here they are!

Chicken Salad (Mary-lu Nelson)

Blend together in a large bowl:
4 cups diced cooked chicken
2 cups diced celery
1 4oz. jar whole or sliced mushrooms
1/2 cup pecan halves, toasted and coarsely chopped
4 slices fried bacon, crumbled

Mix together and add to chicken mixture:
1 cup mayonnaise
1 cup sour cream
1 1/2 tsp. salt
1 Tb. lemon juice

Toss lightly and chill thoroughly. Serve in croissants, tart shells, cream puffs, etc.


Brownies - from my MIL, Carolyn, of course! (these are THE BEST!!!)

Melt together on stovetop:
1 c. melted butter
2 c. sugar
1/3 c. cocoa

4 eggs, one at a time, beating well after each one

1 1/2 c. flour
dash salt
1 tsp. vanilla

Stir well. Pour into a greased 9x13 pan. Bake 25 minutes in 350 degree oven. Cool.

To make a large sheet cake pan of brownies, double the recipe.

1/2 stick butter, melted
1/4 cup cocoa
1/4 cup milk or cream
3/4 lb. powdered sugar
1 tsp. vanilla
dash salt

Blend thoroughly.

For caramel brownies (what I made today), put 1/2 of the brownie batter in the 9x13 pan. Bake for 10 minutes, remove from oven and pour 1/2 jar of Mrs.Richardsons butterscotch caramel over the bottom layer. Add the remaining batter on top of the caramel, and bake for 15 more minutes or until a toothpick inserted in the center comes out clean. (I like to do these in a 9x13 pan and add almost the WHOLE bottle of caramel - they are divine!)

For mint brownies, bake brownies as directed and then make a minty layer using powdered sugar, butter, and creme de menthe syrup (Torani is the brand I prefer) until you get a frosting consistency. Frost the brownies with this mint layer, let set and then frost with chocolate frosting. I have also used peppermint Torani's and red food coloring for peppermint brownies around Christmastime.

Good Times with Good Friends

View this slideshow created at One True Media
Let Your Light So Shine!

These are my girls!
I believe this was 1994/1995 school year (Back row) Anna, Rachelle, Erin, Jessie, Heidi (Front row) Deanne, Me
Just for the record, we all DID HAVE DATES. We wanted a photo with just the girls, as well as one with our dates. :-)

I will always be grateful for these girls in my life! It's surprisingly comforting to be surrounded by friends who knew me when I was a spazzy, emotional teenager with big hair - they liked me then, and still like me now! They know me completely - the real me, not the current, trying to be a grown-up me . We were together everyday for about 4 years. After singing in a show choir together in 9th grade, we formed our own singing group: Harmonique. The six of us (plus my mom, who devoted countless hours as our accompanist, and Erin who played the bass) kept ourselves quite busy rehearsing new music, practicing old music, and singing at everything from fairs, ward parties, high school choir concerts, seminary, firesides and many MANY sacrament meetings. My mother wrote much of our music - including the song 'Let your light so shine' that we recorded in 1995, and our seminary theme song 'Feast Upon the words of Christ'. We also double dated a lot and were basically inseparable. I owe these girls my high school life - they were such good friends at a time when good friends are essential. I believe that these friends helped shape me into a better person than I could have been without them.

Even now, I count these girls as some of my closest friends. Today we got together and had a good, old-fashioned sing-a-long at my moms house. Rachelle currently lives in Chicago so wasn't in attendance. Also, Erin had to work and so couldn't join us, either. It is especially amazing to me when I realize how many children we have between us - 5 1/2 girls and 17 BOYS! That is 22 (and 1/2) children..... WOW! That idea would have been difficult to wrap my mind around at the time the above photo was taken!

Here we are today singing, 'My Love' (a song my mom wrote). I feel bad you can't really see everyone - wasn't it great of me to stick myself front and center? :-)

Here's a photo of the children - only about HALF of them!

And here are 'the girls' - I don't think we've changed too much in 13 years! :-)

Tuesday, April 01, 2008


I can't believe little Jake is almost FIVE months old! He is still such a sweetheart - he smiles and giggles almost all day. He sleeps through the night, loves to hang onto toys, and loves to play with his big brother's. Here are some recent pictures of our little sweetie.

I have never had a thumb-sucking baby until Jake. It melts my heart! He readily calms himself by popping his little thumb in his mouth. I love the way his fingers curl around his nose. This blanket is his current favorite - made my our friend Lacey. She also made blankets for Nate and Drew that also were the favorites - she's got the touch!

Taken a few weeks ago. I love this one because it shows off his coloring. He is such a sweet baby!