Monday, January 5, 2009

Monday, January 5, 2009

Quote of the day (Thanks Charlie!): That which we persist in doing becomes easier - not that the nature of the task has changed, but our ability to do it has increased. ~ Ralph Waldo Emerson

Since Peter had to go back to work today and he also has slept on the floor of Mattie's room for the past 10 nights, I decided to give him a break. In addition to sleeping in the hospital every night that Mattie has been admitted, Peter also has become another nursing expert, and between the two of us we are a regular pair of Florence Nightengales. So last night, I stayed in Mattie's room. Mattie slept very soundly and only got up at 3:30am and 6am to go to the bathroom. Despite how well Mattie did, I did not sleep well. I was worried that I wouldn't hear him if he needed me, which of course makes no sense. After all, I am in the same room as he, but my ears are still clogged and I don't hear as well as usual. I am developing a greater understanding for people with hearing impairments from this congestion. This whole six month ordeal so far has been a lesson in empathy, and I get the whole impact of illness so much better now, when here I thought I understood it quite well before.

This morning Mattie had a smooth morning. He woke up in good spirits. Before he headed to the hospital, I flushed his lines, administered his IV GCSF (the white blood cell growth factor), and of course got him cleaned up and dressed. Mattie had breakfast this morning and then told me what foods he wanted me to pack-up to take to the clinic in case he got hungry. When we got to the clinic, Jenny and Jessie greeted Mattie and immediately engaged him in an art project. They saved for him a lovely cardboard box, and he started strategizing what he was going to transform it into. Mattie decided to make a rattlesnake out of model magic and then created a three floor house for the rattlesnake. Because every good snake needs a house, no?! NOT! He loves these creepy crawling things because he knows it makes me jump, and I am happy to ham it up over his creations. Mattie had his weight, blood pressure, and temperature taken today. Mattie is a solid 41 pounds. It seems to me that he has lost a pound in just a week. So our goal continues to be to encourage him to eat. Mattie met with Dr. Synder today. Mattie is not wild about most doctors (other than Dr. Bob of course!), but he has his own special rapport with Dr. Synder. It is like the meeting of the minds when they interact with each other. It is fun to watch. I find Dr. Synder a very warm, empathetic, and competent doctor. She doesn't have children of her own yet, but she just gets it. She understands my nervousness about Thursday's CT scan, and she spent some time with me just chatting. Interestingly enough, many of you may not know this, but Mattie's central line (AKA "Sparky;" just so we are all on the same page, a central line is a catheter placed into a large vein in the chest. It is used to administer medication or fluids) also has a middle name. But to Mattie this is a secret. He is slowly revealing Sparky's middle name to select people. He told me first, then Peter, then Dr. Bob, then Kathleen (one of his HEM/ONC nurses), and today he told Dr. Synder. I find this just fascinating to whom and how Mattie reveals this information. Of course the condition of Mattie telling you is that you cannot tell anyone else.

Mattie spent some time in the clinic today because he needed an administration of Pentamidine. This is a preventative antibiotic administered to Mattie every three weeks to prevent pneumonia. In the beginning of Mattie's treatment, he was given bactrium, which was an oral antibiotic. He refused to take it, and Dr. Synder recommended Pentamidine as an alternative. Anything through Mattie's central line is always welcomed, compared to taking something orally. The actual administration took about an hour today. While Mattie was getting his antibiotic and working with Jenny and Jessie, I had a lovely lunch thanks to the Keefe family. Thank you Debbie for coming to the hospital to drop off lunch. The chicken soup and hot tea were greatly appreciated. The salad was delicious too! Much thanks! Once the admistration was done, Mattie wanted to pack up and go home, but he had a good time with Jenny and Jessie as always. It seems more like the natural order of things. My radar always goes up when Mattie can't relate to Linda, Jenny, and Jessie. When I got home, I took a picture of Mr. Rattler and his new home. Take note that Mr. Rattler has his own refrigerator and glass table in his home. I think I will need an additional room in our home just to accomodate all of Mattie's boxed creations!

The news on the blood count front is that Mattie is NO longer neutropenic. His absolute neutrophil count was over 10,000 today. Remember it was only 500 on friday (at which point he was considered moderately neutropenic). Peter and I are in unchartered territory today. Previous to his last admission, Mattie never experienced neutropenia where he did not become sick with a fever and needed to be hospitalized. Mind you this makes no sense either. Dr. Synder agreed with my feelings today too, but we both know that nothing is typical with Mattie. In just a few short weeks, Mattie had Etoposide and Ifosfamide, which you may recall left him very sick. He developed neutropenia four days after its adminstration and was then hospitalized for 8 days. Pretty soon there after, Mattie was given Cisplatin and Doxorubicin right before Christmas. These are two drugs he never tolerated well in the past. So in all reality his immune system should be hit pretty hard, and the fact that he did not become ill from his current bout of neutropenia is remarkable. I pray this news is the start of better things to come this week. But I do know that folks are preparing me to hear bad news on Thursday. I guess one has to prepare for this, but in all reality how do you ever prepare for such news about your child? News which could mean that Mattie's cancer has spread more extensively, that current standardized treatment isn't working, etc. I could go on, but you get the picture.

Needless to say, Thursday's CT scan weighs heavily on my mind and Peter's mind. The scan is at 10am. Jey, our favorite CT tech, and Mattie's big brother is now out on paternity leave. So this makes me a little uneasy, since Mattie responds to Jey. I am trying to convince Mattie to try to do the scan without sedation this time. The scan only takes 10 minutes, but to come out of sedation for Mattie can take several hours because of how his body reacts to it. Mattie gets very upset and scared with scans, and Linda and I have learned that if there is a scan, we desperately need Debbi (AKA, our sedation nurse angel). But if we can just give Mattie Versed this time, which is an anti-anxiety medication, and not knock him out completely, the recovery time will be much quicker. So this is my goal as we head into Thursday. I will meet with the doctors on Thursday at 2:30pm to receive the scan's results. A mom at SSSAS' upper school, Kathryn (who is cancer survivor), gave me a special gift that is coming in very useful this week. She brought me back a worry stone from her trip to Sedona, Italy. The premise of the worry stone is "as you hold this stone in your hand, imagine the angel's calm presence surrounding you. Imagine yourself letting go of hurts or worries." The package that the worry stone came in says:

"Give your worries to the angels, it's time to heal your heart. Every day's a new beginning, where love and hope can start. Give your worries to the angels, release your doubt and fear. Trust in God to always be there with angels always near." Thanks Kathryn for this meaningful gift!

Mattie and I had a nice afternoon together. We built puzzles, chatted, played with a slinky, determined which stairs the slinky worked better on, and even took a walk outside. Toward the end of the afternoon, we were playing with Mattie's electric trains, and as they were circling around, we were trying to toss coins into the cargo train car. We were trying to see who could actually get more coins into the car as it was running around the track. He loved that and it kept him busy for a while. We want to thank the Tilch family for a wonderful dinner tonight. Mattie loved the pizza, as did we, and we appreciate the salad, pasta, and desserts. Thank you for your generosity!

On the electronic front, we want to thank Goli, Karen, and Martha for your e-cards and e-mails. I would like to thank my friend, Sara, for sending me the book, "When things fall apart." Sara said it has helped her through difficult times and she hopes it will do the same for me. Clearly the title, captures our cancer world quite well. Thank you Sara! I would like to end tonight's blog with two quick e-mail thoughts that were sent to me today. The first one comes from a colleague of mine. Martha wrote, "Thank you for sending the Mattie blog address. It was just what I needed. I am in Mexico and was having withdrawal without the blog. Hug each other for me and know I am moved and very grateful for Vicki's openness, honesty in revealing her feeling, and enriched in my life and work by the courage of each of you as you travel this journey. Hoping paves the way to coping." The second e-mail comes from my friend, Charlie. Charlie wrote, "If there were an award for motherhood, for determination, for any one of a number of things, you would be the gold medalist. I never cease to be amazed at what you manage to do in spite of everything you face. Mattie is truly blessed to have you as his mother and advocate!"