Sunday, February 22, 2009

Sunday, February 22, 2009



Quote of the day (Thanks Daddy!): "The great are simply those who have risen to meet their destiny. Everyone has a destiny infinitely richer than they know." ~ Albert Einstein.

Mattie and I had a peaceful night of sleep, despite being in the PICU. I am just so exhausted now, that I can fall alseep anywhere and in any position. I learned early on this morning that Mattie's Absolute Neutrophil Count jumped from 16 (yesterday) to 280 today. I had a feeling that this would qualify Mattie to be discharged from the hospital. I met with Dr. Abu-Ghosh to discuss this. Just so you know, Dr. Abu-Ghosh is one of the doctors in the Hem/Onc practice and she is also Brandon's doctor. Dr. Abu-Ghosh gave me a choice, either Mattie could go home today, or he could stay through monday, and leave after his MTP-PE administration. It did not even take me a minute to make this decision, I elected to go home. She was fine with this choice, and she also understood my request to postpone Mattie's Methotrexate administration to monday, March 2. There are two reasons for this decision. The obvious of course, we are exhausted, and Mattie needs the time to spend at home and in a more normal environment for a week. But also, it is much easier to start chemo on a monday, rather than midweek (right now Mattie's counts are not high enough to even qualify for chemo, but the thinking is that by thursday, his counts will be fine and could technically starte chemo). It is very difficult for Mattie to be in the hospital over the weekend. He gets bored, feels cooped up, and acts more like a child who is sick on the weekends. During the week, Mattie has access to his "ladies" and to me they are part of the healing process. Curing cancer means so much more than pumping chemo through someone's veins. It is the total buy into the process, emotionally, psychologically, and spiritually. Linda, Jenny, Jessie, and Anna help us achieve this holistic balance. We would be lost without them!

I called Peter at home today, and told him that I was going to start packing up Mattie's room. The pack up today was painful. After 11 days in the hospital, we accumulated a ton of things. Why? Mattie has projects and bits and pieces of things everywhere in the room. Despite my best efforts to organize things, it can get out of hand quickly. So literally it took me over two hours to pack and sort things in Mattie's room. I fortunately was able to do a lot of it while he was still sleeping. When he woke up, Mattie was thrilled to hear that he could go home. I haven't broken it to him that he is headed to Georgetown on monday for blood work and MTP-PE in the clinic. He also has an audiogram (hearing test) on wednesday (lovely, I can't wait to hear the results to this!), and then returns again on thursday to the clinic for more blood work and an MTP-PE administration. Because of Mattie's bad reaction (intense shivers and pain) to MTP-PE last week, we will be spending longer in the clinic to assure that Mattie doesn't have such a reaction. So this puts us in clinic on monday and thursday for about six hours each day. So I am hoping I am impressing upon you that a "break" is NOT really a break from the hospital.

When Peter got to the hospital this afternoon, he did several trips down to our car for us and then we were on our way home. You had to see us moving out. Mattie was in his wheelchair and holding onto his cupcakes for dear life. That was his responsibility. It was very cute. When we got home, we unpacked and Peter and Mattie started working on a wonderful lego set that Peter bought Mattie. Mattie was very excited, and I continue to be in amazement with how Mattie understands legos and building. You can show Mattie how to put a complex structure together once from a plan. Then literally you could take the structure apart, and he is able to reassemble it without the plan. Actually he has always been able to do this, when Mattie was two years old, he was using a screwdriver, and taking his toy cars apart, but ironically, he would then put them back together afterward.

After I unpacked, I took a second shower for the day. There is something about showering at the hospital, I just don't feel clean. So it was lovely to have a clean shower with water pressure! I then decided to send an e-mail to Mattie's doctors alerting them to the fact that we were out of the hospital and that we decided to start chemo on March 2. One of Mattie's doctor responded back right away and told me he would prefer Mattie start chemo this thursday if his counts are back. He cited some research to the benefits of attaching Mattie's cancer aggressively and intensively. Though I appreciate the research, does the research really feel as if three days (thursday versus monday administration) will make all the difference in outcome? I don't know! I wrote back to the doctor and told him that I strongly feel that March 2 is better for us, but of course in the back of my mind I hear a voice (okay NOT LITERALLY) saying... we have to TREAT THIS CANCER AGGRESSIVELY! I want NO regrets.

At 5:30am, I received an e-mail from Tamra (an upper school mom at SSSAS). Her dog woke her up barking, and Mattie woke me up to use the bathroom. So we were exchanging e-mails at that hour. Tamra offered to have Louise come over this afternoon to play with Mattie. So Louise (a SSSAS senior) came over to play with Mattie at 4:30pm. Peter and I went out for an early dinner, and it was nice to get out, but I did not feel like talking much. I am just too tired and stressed out, and Peter unfortunately knows all my many moods, and was very supportive. When we got back, Louise and Mattie were having a good time together. Apparently Mattie, Louise, and Louise's sister, Meredith have created a "Steve Irwin" kind of television show about the amazing creature entitled, Matticus Brownus! The girls play the narrator and film crew, and Mattie is obviously the famous Matticus Brownus. They create all sorts of stories and adventures! I think we may have a children's book in the making here. I love how creative they are together. Louise made smores (without the chocolate) for Mattie today. Mattie loves marshmellows, so this should be a hit. Mattie also loves the flashlights Louise gave him that require no batteries. He loved using them in his tipi this evening! Thanks Louise for giving Peter and I a break.

Mattie also had a visit from JJ tonight. JJ missed Mattie while he was in the hospital, and JP (JJ's owner) just got back from a trip to Spain. JP brought Mattie back a wonderful bull made out of mosaics to match the matador piggy bank that he previous gave Mattie. Mattie also opened some packages that came in the mail. Thank you Brian Boru (our feline friend), for the Scooby Doo book and wonderful animals to play with. We want to thank Honey for the wonderful rainforest puzzle. Mattie can't wait to assemble it! Thanks Janie for the great book and balls, and we will be sure to donate the hand knit hats to Georgetown's hospital. They are lovely, and will make some children very happy! Thanks Susan D. (Mattie's school counselor) for the hysterical valentine's day card. It was right up a six year old boy's alley! Mattie's former preschool teacher, Marliyn, sent Mattie a wonderful game she created. She stuck sunflower seeds in a big plastic bottle, and stuck tiny objects in the seeds, and Mattie has to shake the bottle to find all the pieces. Mattie calls this game, "shake and find." Very clever and Mattie looks forward to making more with Marilyn! Mattie also loves the Hawaiian shirt his Uncle Chris sent him from his trip to Hawaii. Makes you want spring and summer to be here now! Mattie also loved the adorable Lightning McQueen cookie his grandma and granddad sent him from Boston!

I can't believe I am writing tonight's blog from home. I did not expect to see home for a couple of days. Mattie surprised us all today with his counts. Way to go Mattie! Peter put Mattie to sleep a few minutes ago (7:30pm), which is unheard of, but Mattie was exhausted. I think it is the excitement of being home and packing up from the hospital, which was very tiring. I have to remind myself that Mattie's counts are still not strong, and therefore, we do need to be careful with his energy level and activities. I end tonight's blog with two e-mails I received today. The first one is from my friend, Charlie. Charlie wrote, "This is clearly a tough weekend. Mattie is well enough to do things but not well enough to be at home and the usual distractions are not available (i.e. the playroom). It seems as though they need to find a way to make some space or some games and crafts available on the weekend for children since illness does not confine itself to weekdays. I can understand Mattie's desire to be home, because although the house is confining it is not nearly as restrictive as the hospital. I really hope his numbers come up soon so that the treatment can continue and all of you can get a much needed break from the hospital (even though being home is its own kind of challenge)." I just wanted to clarify that we do have access to a childlife closet filled with toys and videos over the weekend, and Linda usually leaves us with activities to do as well, but it is just not the same without Linda and the interns around.

The second e-mail is from one of Peter's colleagues at work. Pam wrote, "A classmate sent this along - - and made me think of how you, Vicki, and Mattie have risen to the incredible challenges you are facing. I just had never thought of you guys as coffee beans! I hope you enjoy the story of The Carrot, The Egg, A Cup of Coffee!"

A carrot, an egg, and a cup of coffee...You will never look at a cup of coffee the same way again.

A young woman went to her mother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up. She was tired of fighting and struggling. It seemed as one problem was solved, a new one arose.

Her mother took her to the kitchen. She filled three pots with water and placed each on a high fire. Soon the pots came to boil. In the first she placed carrots, in the second she placed eggs, and in the last she placed ground coffee beans. She let them sit and boil; without saying a word.

In about twenty minutes she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl.

Then she ladled the coffee out and placed it in a bowl.

Turning to her daughter, she asked, "Tell me what you see."

"Carrots, eggs, and coffee," she replied.

Her mother brought her closer and asked her to feel the carrots. She did and noted that they were soft. The mother then asked the daughter to take an egg and break it. After pulling off the shell, she observed the hardboiled egg.

Finally, the mother asked the daughter to sip the coffee. The daughter smiled as she tasted its rich aroma. The daughter then asked, "What does it mean, mother?"

Her mother explained that each of these objects had faced the same adversity: boiling water. Each reacted differently. The carrot went in strong, hard, and unrelenting. However, after being subjected to the boiling water, it softened and became weak. The egg had been fragile. Its thin outer shell had protected its liquid interior, but after sitting through the boiling water, its inside became hardened. The ground coffee beans were unique, however. After they were in the boiling water, they had changed the water.

"Which are you?" she asked her daughter. "When adversity knocks on your door, how do you respond? Are you a carrot, an egg or a coffee bean?

Think of this: Which am I? Am I the carrot that seems strong, but with pain and adversity do I wilt and become soft and lose my strength?

Am I the egg that starts with a malleable heart, but changes with the heat? Did I have a fluid spirit, but after a death, a breakup, a financial hardship or some other trial, have I become hardened and stiff? Does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and hardened heart?

Or am I like the coffee bean? The bean actually changes the hot water, the very circumstance that brings the pain. When the water gets hot, it releases the fragrance and flavor. If you are like the bean, when things are at their worst, you get better and change the situation around you. When the hour is the darkest and trials are their greatest, do you elevate yourself to another level? How do you handle adversity? Are you a carrot, an egg or a coffee bean?