Monday, April 6, 2009

Monday, April 6, 2009

Quote of the day: Where a flower blooms, there is hope. ~ Lady Bird Johnson

Peter helped me get Mattie ready for his clinic appointment today. That was very helpful, because trying to get Mattie up, dressed, and loaded into the car (wheelchair and all) is becoming more wearing with each week. In fact, the whole pace is getting tiring but in all reality there is no end in sight for us. I had the opportunity today to read a couple of other osteosarcoma blogs and learned that two young children with this horrible disease are at the end of their fight. Sammie is 11 years old, and Darian is 6 years old. I ask that you pray for these children and their families. Can you imagine having to have hospice in your home in order to help ease the pain and suffering of your child in their final hours? How on earth do you say good-bye to your child? I have NO answers. I am speechless and in great awe of these courageous families.

Mattie had a MARATHON clinic appointment today. We arrived at the clinic at 11am and we did not get home until 6pm! I was thoroughly wiped out in the end. What made this experience doubly bad was the simple fact that it was freezing in the clinic. It felt like there was air conditioning blowing which would be okay if you were running around, but Mattie and I were sitting still. I was so cold that when I loaded Mattie back into our car, I turned my seat heater on to thaw out. I have a chill that I still can't get rid of. The other issue was it was an absolute zoo in the clinic today. There were kids and parents everywhere. I am not sure who I felt worse for the nurses and Jenny and Jessie, who had to balance all of this, or the parents who had to deal with the chaos, noise, and slow turn around time.

I am happy to report that Mattie got a dosage of kytril (an anti-emetic) in clinic, and we have six more dosages headed to our home tonight thanks to our in-home medication supplier. Wonderful! Mind you if we had this to begin with, Mattie would have had a better Sunday. I tell you I am learning SO many lessons! Mattie had a busy day in clinic. He brought a toy train with him and he incorporated this train into his art work. The train is special to him, since his buddy Zachary gave him this train from his recent trip to London. Mattie is a proud owner of a toy replica of the London Underground. In fact, Mattie painted a ceiling tile of this train. Mattie had a co-artist today, Maya. Maya is 8 years old, and we have seen her in clinic for several months now. Mattie and Maya have a lot in common, with similar personalities. Normally Mattie doesn't take well to other children joining him as he is painting, but Maya found a way to jump right in. So much so, that they landed up painting a second ceiling tile together. Check it out!

Left: Mattie's Underground with Maya's Sun!

Right: Mattie and Maya painting one of my favorite symbols, a rainbow.

Mattie and Maya had a fascinating conversation together. Maya has two brothers, and she asked Mattie if he had siblings. He told her that he did not. She then acknowledged that he was an only child. Her reaction to this at first was it was neat! She said that he must be able to do whatever he wants to and doesn't have to share anything. Mattie piped in and told her that this wasn't true. That Peter and I have expectations for him and also expect him to share his things with others. Maya went on and said that being an only child must be very lonely. At which point, Jenny (one of our art therapists), told Maya to ask Mattie if her statement was true? I suspect Jenny had Maya ask Mattie because she felt Mattie leads anything but a lonely existence. Mattie's response was very sweet. Mattie said he was very happy and is never lonely! That was a special gift to hear today. Like Mattie, I am an only child, and in all reality, I have and am never alone. After all, you could have many siblings and not get a long with any of them. You can't pick your family, but you can pick your friends, and God knows I have the best out there!

Later in the afternoon, two other small children were telling Jenny and Jessie that they have cell phones of their own. Mattie looked at me dumb founded. He wanted to know why he did not have a phone. I laughed! I asked him who on earth he would be calling if he had a cell phone? You have to understand that Mattie isn't a big phone talker at all, and strongly dislikes when I am on the phone. So I thought this whole conversation was a riot. Any case, Mattie said he needed a cell phone so he could call me! Hysterical! Especially since we spend most of our days and nights together! The irony about today, is it captures an observation I made months ago. There really should be group play dates for children within the clinic on a regular basis. It is through these group activities and interactions that I learn more about how Mattie really feels and is processing his illness. In fact, the first time we met Maya, she was talking to some of us at the art table, about how painful it is to get an IV placed into her arm so she could receive medicine. Mattie was engrossed in his art project at the time, and I figured he was tuned out, as he does when conversation is taking place. However, after Maya was talking for a bit, Mattie looked up and said, "I understand, I felt that way too." It was after that dialogue with each other, that they made a connection.

Mattie handled his MTP-PE infusion very well, but you really do have to wonder how medical professionals expect a seven year old to be so good, patient, and compliant for SEVEN hours!? It is hard for an adult to spend that amount of time in a clinic, much less a child. Thank God for Jenny and Jessie, otherwise, I wouldn't have a prayer entertaining Mattie for that long.

When Mattie and I arrived home this evening, Peter helped us upstairs. Soon there after, we all sat at the table together and had a lovely dinner thanks to the Frye's. Thank you Julie and Alex for the paint and peel window art! We are going to enjoy doing this together! I appreciate your support, because I was in no mood to deal with food when I got home from clinic.

As we head into Tuesday, I am driving Mattie to Washington Hospital Center to meet up with Dr. Bob. Bob is placing a cast on Mattie's right leg and from my understanding the cast will remain on Mattie's leg for three weeks. This should be interesting because we will have to learn how to negotiate our way around in a cast. We have had to deal with harder things, but with each change there is a new challenge.

I would like to share a message I received from my friend Charlie. Charlie wrote, "Sunday was another day of ups and downs. Sometimes it is a case of the "best laid plans" but unfortunately, even the best plans are tossed out the window when illness intrudes. I am sorry Mattie became ill and your plans for the day were derailed; but I am glad you and Pete still managed to get in a little relaxation and pampering, I am sure that helps in the short run. I hope today's hospital visit goes well and uneventfully, that Mattie gets his needed meds and feels better so that you can enjoy some days away from the hospital before the next round of chemotherapy."

I end tonight's blog with a meaningful story my mom sent to me! It is entitled, The Buzzard, Bat, and Bumble Bee.

THE BUZZARD, BAT, AND BUMBLE BEE

THE BUZZARD:
If you put a buzzard in a pen that is 6 feet by 8 feet and is entirely open at the top, the bird, in spite of its ability to fly, will be an absolute prisoner. The reason is that a buzzard always begins a flight from the ground with a run of 10 to 12 feet. Without space to run, as is its habit, it will not even attempt to fly, but will remain a prisoner for life in a small jail with no top.

THE BAT:
The ordinary bat that flies around at night, a remarkable nimble creature in the air, cannot take off from a level place. If it is placed on the floor or flat ground, all it can do is shuffle about helplessly and, no doubt, painfully, until it reaches some slight elevation from which it can throw itself into the air. Then, at once, it takes off like a flash.

THE BUMBLEBEE:
A bumblebee, if dropped into an open tumbler, will be there until it dies, unless it is taken out. It never sees the means of escape at the top, but persists in trying to find some way out through the sides near the bottom. It will seek a way where none exists, until it completely destroys itself.

PEOPLE:
In many ways, we are like the buzzard, the bat, and the bumblebee. We struggle about with all our problems and frustrations, never realizing that all we have to do is look up! That's the answer, the escape route and the solution to any problem! Just look up.
Sorrow looks back, Worry looks around, But faith looks up!