Monday, May 11, 2009

Monday, May 11, 2009

Quote of the day: "The place to improve the world is first in one's own heart and head and hands." ~ Robert M. Pirsig

Before Mattie headed to bed last night, he converted his Scooby Doo mystery machine that his Grandma and Grandad gave him into the "Mama mobile." Mattie requested white paper, tape, and markers, and he occupied himself for a good 30 minutes on this project. When he was done, he was very excited to get my reaction. You can see in the picture on the left, three stick figures. These three represent, Peter, myself, and Mattie. Apparently the bigger figure in the middle is me! The license plate on the van says, "mom." So in honor of Mother's day, I received a van named after me!

Peter stayed with Mattie last night, so that I could get some sleep before taking on days and nights in the hospital this week. Peter helped me get Mattie up and ready for the hospital this morning. Having Peter around in the morning makes things go much smoother.

My parents and I took Mattie to the clinic. Mattie checked in and had his vitals taken. Pretty soon there after Ann came to visit and to play with Mattie. Ann brought her bag of tricks and a McDonald's happy meal. Mattie dissected his cheeseburger piece by piece. Eating the bread first, then the cheese, and then part of the meat! You have to see it to believe it. Ann brought a quicksand kit, and Mattie was in love. He loves making gooey substances and sticking his hands in it. So unlike his mother! Mattie's clinic buddy, Maya, was there today. Some of you may recall that Mattie and Maya did a ceiling tile together in the clinic. They get along well. Today Maya was watching Mattie sticking his hands into this quicksand and playing with toy animals. Maya at first was opposed to the feeling, but then she got used to it and jumped right in, digging through glop to reveal the animals. In fact, Ann even buried pennies in this quicksand, and the kids couldn't wait to dig through to find the "treasure." Ann's occupational therapy skills came out today, and I would say she was very successful with both children. They were having a ball, and using their hands and muscles to pull their way through the quicksand. I took a picture of Mattie and Maya digging for coins.

While Ann was working with Mattie, I had a chance to eat lunch and chat with Jocelyn. Some of you may have met Jocelyn at the walk. She too has Osteosarcoma, but unlike Mattie she is in her 20s. She is treated at Georgetown too, and she came to the walk to support Mattie on Saturday. That meant a great deal to me. In addition to sharing a diagnosis both Mattie and Jocelyn also have the same surgeon, Dr. Bob. It was nice to learn more about Jocelyn, and I find her to be a very inspiring and strong young woman.

Ann stayed with Mattie, as I had to go register Mattie for admission. Ann and I joked about this this paperwork process. I told her I was so unfamiliar with registering, that I may need a map to locate the admissions desk. We both laughed, since this couldn't be further from the truth! Later in the afternoon, I took Mattie up to the PICU. Kathleen and Jenn were his nurses today, and they gave Mattie a big greeting and told him how much they enjoyed his walk! While Mattie was chatting with Kathleen, he grabbed my camera and began to show her pictures of his tent caterpillars which he collected at his walk on Saturday. Mattie loves to put these caterpillars in a jar, feed them, and watch them morph into moths. This is our third year in a row doing this! The first year, I was grossed out by all these caterpillars in my house, but now, I am completely used to it. In fact, Mattie wanted to take the caterpillars into the hospital today, and when I said no, he told me he wasn't going to the hospital. However, we compromised and I took pictures of the caterpillars for him to show to Kathleen instead. You can see a sample picture here!

After Mattie showed Kathleen the caterpillars, he then started snapping pictures of "gross" things around the room, such as the toilet and even a filled urine specimen cup. Got to love him! Mattie then spent some time with Linda and Katie (Linda's new childlife intern) in the playroom. While he was playing, I rearranged Mattie's room, and then spoke with Dr. Toretsky, the attending physician on the floor this week.

Mattie came back into his room around 4pm to start his MTP-PE infusion. Katie came back with him, and they were playing a cute game together, in which Mattie pretended to be calling Katie on the telephone and solicited her for things by phone, such as paper supplies, airplanes, etc. It was funny to listen to. However, after about 20 minutes into his MTP infusion, I noticed Mattie starting to get cold, and then falling asleep. I let Kathleen, Mattie's wonderful HEM/ONC nurse, know what was happening and she watched him closely for the next hour. This has been the FIRST MTP administration where Mattie has had a reaction while it is infusing. However, Mattie did not get rigors (chills) or develop a fever. He just is intensely tired and has been sleeping for hours now! He is also flush in the face.

At 9:30pm, Ellen, Mattie's wonderful night HEM/ONC nurse, started his chemo. He is receiving Etoposide over the course of one hour, and then Ifosfamide for four hours. So his chemo infusion will be complete sometime at 2am. However, this chemo requires a great deal of hydration and flushing, so Mattie will be up consistently every two hours into the early hours of the morning. So in my mind this is going to be a very intense week!

We want to thank the Murphy family for a wonderful rib dinner. It was nice to see you tonight Elizabeth, and my family appreciates your continued support. It is now 10:30pm, and Mattie is still sleeping soundly, only waking up to go to the bathroom. It is eerily silent this evening in the PICU, and I sit here some what on edge by myself, listening for Mattie to make a noise, and watching the IV pole drip this clear colored chemo into Mattie's central line. Of course a part of me can't help but become nostalgic as this is our last week of chemo. I was sharing with Ellen tonight some of my initial thoughts and experiences during Mattie's first week of chemo in August 2008. How on earth has 10 months passed us by? On one hand it seems like yesterday in which we began treatment, and on the other hand it feels as if Peter and I have lived through our own private war that has lasted a lifetime. This war has left us with internal scars, and it is hard to know how one ever comes to peace with this after math. For ten months, the PICU has been my home. Now what? What happens to us when we don't come here each week? It seems like such a big physical and emotional transition! I also worry as Mattie's pending surgery gets closer. I worry how he will handle the surgery? I wonder how he will recover, and I wonder how he will convalesce at home without the support of people like Linda, Jenny, Jessie, and Anna. I have no answers, only questions at this point!

I would like to share a message I received from my friend, Charlie. Charlie wrote, "To all the Mattie Walk volunteers-Thank you for all your hard work! It sounds like Mattie had typical post race let down. If you read about athletes and their training for events, what you find is that there is a big dip the day after the event or the race. Some get sad, others depressed; some feel aimless. I think a version of this may be what has struck Mattie. There is tremendous buildup and no matter what the result, there is this feeling of "is that all there is" that comes into play. Is it pleasant? No. Is it normal? Yes, I believe it is. And it will pass pretty quickly as Mattie is once again involved in the medical routine that is starting back up. I read fear and anxiety in the blog for Sunday as you and Peter come to terms with this last round of chemo and the upcoming surgery for Mattie. Fear of the unknown is very powerful and can be so intense as to be paralyzing. I commend you for knowing and facing this upfront as Mattie will need your clear thinking and decision making on his behalf. I think of all you have gone through and how much more there is to do-the watching and waiting and the long term implications of what has already been accomplished and I grieve with you for the life which should have been and hope you can still celebrate the life ahead."

I end tonight's posting with a poem Charlie sent me entitled, "The Price of Children." I hope you enjoy it as much as I have.

The Price of Children

Here is something absolutely positive for a change. I have repeatedly seen the breakdown of the cost of raising a child, but this is the first time I have seen the rewards listed this way. It's nice.

The government recently calculated the cost of raising a child from birth to 18 and came up with $160,140.00 for a middle-income family. Talk about price shock! That doesn't even touch college tuition.

But, $160,140.00 isn't so bad if you break it down. It translates into:

* $8,896.66 a year,
* $741.38 a month,
* $171.08 a week.
* A mere $24.24 a day!
* Just over a dollar an hour.

Still, you might think the best financial advice is; don't have children if you want to be 'rich.' Actually, it is just the opposite.

What do you get for your $160,140.00?

* Naming rights: first, middle and last!
* Glimpses of God every day.
* Giggles under the covers every night.
* More love than your heart can hold.
* Butterfly kisses and Velcro hugs.
* Endless wonder over rocks, ants, clouds and warm cookies.
* A hand to hold usually covered with jelly or chocolate.
* A partner for blowing bubbles and flying kites.
* Someone to laugh yourself silly with, no matter what the boss said or how your stocks performed that day.

For $160,140.00, you never have to grow up. You get to:

* finger-paint,
* carve pumpkins,
* play hide-and-seek,
* catch lightning bugs,
* never stop believing in Santa Claus.

You have an excuse to:

* keep reading the Adventures of Piglet and Pooh,
* watch Saturday morning cartoons,
* go to Disney movies,
* wish upon the stars.

You get to frame rainbows, hearts, and flowers under refrigerator magnets and collect spray painted noodle wreaths for Christmas, hand prints set in clay for Mother's Day, and cards with backward letters for Father's Day.

For a mere $24.24 a day, there is no greater bang for your buck. You get to be a hero just for:

* retrieving a Frisbee off the garage roof,
* taking the training wheels off a bike,
* removing a splinter,
* filling a wading pool,
* coaxing a wad of gum out of bangs, and
* coaching a baseball team that never wins but always gets treated to ice cream regardless.

And, as the infamous late-night television commercials say: But wait! You also get a front row seat in history to witness the:

* First step,
* First word,
* First bra,
* First date,
* First time behind the wheel.

You get to be immortal. You get another branch added to your family tree, and if you're lucky , a long list of limbs in your obituary called Grandchildren and great grandchildren. You get an education in psychology, nursing, criminal justice, communications, and human sexuality that no college can match.

In the eyes of a child, you rank right up there under God. You have all the power to heal a boo-boo, scare away the monsters under the bed, patch a broken heart, police a slumber party, ground them forever, and love them without limits, so one day they will, like you, love without counting the cost. That's quite a deal for the price!!!!!!!

Love & enjoy your children & grandchildren & great-grandchildren!!!!!!!
It's the best investment you'll ever make!!!!!!!!!