Good Friday

Friday, April 10, 2008

Quote of the day: "The world is full of suffering, it is also full of overcoming it." ~ Helen Keller

Before I begin tonight's blog posting, we want to acknowledge the spiritual and meaningful season that we are in. We want to wish our Jewish readers a very happy and peaceful Passover. We also want to acknowledge for our Christian readers that today is a solemn day in which we recognize the huge sacrifice God made of his only son, so that we may have eternal salvation. With everything happening in our life with Mattie, it becomes challenging to know what time of day it is, much less what month of the year. However, we would be remiss without acknowledging these sacred holidays for ourselves and our readers.

Peter told me that Mattie had a relatively peaceful night, however, Mattie did not fall asleep until around midnight. However, Mattie was up early, and when he woke up he was in a terrible mood. I had the opportunity to sleep through the night at home, but I wanted to get back to the hospital around 1pm today, in time for Mattie's physical therapy session with Anna.

Mattie is still very weak today, and his absolute neutrophil count is ZERO. Meaning that Mattie is very susceptible to picking up any virus or infection around him. He literally has no natural defenses. In addition, Mattie had a non-stop bloody nose this morning. It was alarming to Mattie, but Peter explained to Mattie that this was happening because his platelet count was low. Mattie had a platelet transfusion this morning. So as a recap, on Wednesday Mattie had a red blood cell transfusion, and today he received platelets.

Peter had his hands full with Mattie this morning, and at one point, Peter tells me that Meg (one of Linda's interns), Robbie (a friend of Brandon's and a volunteer), and even Linda were in the room with Mattie trying to pull him out of his funk. It wasn't easy and their magic did not last long, because by the time I arrived at 1pm, Mattie was angry with me and wanted me to go home. That was a first for me! Of course when I said that I would turn around and go home, that was met with opposition. So clearly I stayed! Peter took pictures of Mattie surrounded by the "cheer up" committee today.

Left: going clockwise - Robbie, Linda, Meg, and Mattie

Right: going clockwise - Robbie, Linda, Meg, and Mattie

Before I arrived at the hospital, Mattie sent Linda out on a wild goose chase for foods he wanted to eat. Fortunately Linda had to go to the grocery store to purchase a cake for another patient, but when she came back she brought Mattie waffles, pancakes, his favorite iced cookies, and cupcakes. He was in heaven and ate an entire waffle. That was the extent of his eating real food today! Thank you Linda for going out of your way yet again!

Chris, the president of the Georgetown Chemistry Club, came by today to perform some experiments. Today's experiments involved learning about the properties of polymers. Mattie got the chance to make a non-Newtonian fluid, which literally when you felt it was soft like liquid, however, if you poked at the solution, it felt hard to the touch. This substance was made out of cornstarch and water! So simple, and yet so neat. The second experiment was the formation of gak, one of Mattie's favorites, which involves combining elmer's glue and borax (and in this case green food coloring).

Left: Anna, Chris, Linda, Mattie, and Vicki all playing around with this amazing liquid/solid substance!

Right: Chris and Mattie working on green Gak!

Once, the experiments were done, Mattie had a physical therapy session. Anna had her work cut out for her because Mattie wasn't feeling well and was VERY moody. Mattie is even more tentative about standing now that the cast is on his leg, so the idea of getting him to walk doesn't seem like that is going to happen any time soon. Anna tried her best, and Peter, myself, and Linda were there to support him, but he shut down completely. When Mattie shuts down, that is it, there is not coaxing him to do anything. Anna has a good attitude about all of this, and helps keep up our hope and motivation during these difficult times. But the cast on Mattie's leg was a definite set back for him, and I can only imagine what the next round of surgeries will mean. Each procedure performed on Mattie seems to have an accumulative effect. Meaning, each time he loses control over the use of a body part or experiences pain, there seems to be a learned response or at least a memory of former pain or lack of control. These memories are then brought into the next situation, which is why I believe the next surgery will be complicated, because it won't only be the current surgery Mattie has to deal with, but there will be a compounded level of anxiety from past experiences this year.

This afternoon, we had a visit from Virginia and her son, Jon Morgan. How do I know Virginia? Virginia got to know us through Mattie's blog. A friend of mine posted Mattie's blog address on her community listserv, and this is how Virginia found us. Virginia is a loyal blogger, and has really gone out of her way to support us. Today Virginia and her son came bearing lots of Easter gifts for Mattie, such as an adorable Lightning McQueen Easter basket filled with goodies and a new Scooby Doo movie (which Mattie watched tonight and loved it!), two great gifts from Childsplay such as Magic Science (Mattie loves slimy inventions!), dunkin donuts, and my favorite things: fresh fruit and chocolate ice cream! In addition, Virginia and Jon Morgan brought about a dozen plastic Easter eggs filled with things, which we can hide for Mattie on Sunday. Thank you for your time, energy, and thoughtfulness! You have helped make a hard Easter a little brighter.

We want to especially thank the Bentsen family for providing us with a wonderful lunch and homecooked dinner today. Tamra, I appreciated the tea and soup at lunch, not to mention the brownies. Tamra out did herself tonight, because she made us homemade carrot soup and roasted chicken with string beans! The food was delicious, but Tamra always spoils me with an amazing presentation. Tonight's surprise was she brought us real plates and bowls to use at the hospital and will pick them up on Easter, when her girls come to host an Easter egg hunt for Mattie! It felt as if we went to Tamra's house for dinner tonight, since she shared a part of her home with us! Thank you for supporting us today so graciously! Mattie appreciated the beautiful cupcakes too! Mattie sent Tamra on a wild goose chase today for cupcakes, but she did not disappoint! The cupcakes where in the shape of a beautiful Easter flower!

After we had dinner, I sent Peter home to get some sleep. Since we are trying to switch off while Mattie isn't receiving chemo. Mattie put me through my paces tonight. He did not know what he wanted to do, but he clearly wanted to do something. I went through a whole list with him, but all I kept hearing was "NO I don't want to do that." Finally we made up our own game with his cars, planes, and this huge rubber frog that Tanja gave us. The frog was attacking the cars, and they somehow had to defend themselves. We were very creative in our means of protection. While we were playing Mattie started to feel stomach and mouth pain from his mucositis. So I called in Amanda, his night nurse. Amanda is lovely, but she is a traveling nurse and is not familiar with Mattie and how he likes things done. Instead of Amanda pushing his morphine directly into his central line (which goes into his system faster), she connected the morphine syringe to his IV pump and had it infuse in that way (it enters his system slower). In any case, Mattie was truly upset that she did not administer it the usual way, and because she deviated from the norm, he assumed he wasn't going to feel relief from the pain. His assumption was if the medicine is administered differently it won't work the same way. He worked himself up into an hysterical state. So much so that he was crying and his nose started dripping. But it was dripping blood. Dripping is putting it mildy, it looked like it was gushing. I went through half a tissue box. I called in Amanda, who spoke to the doctor about this, but they were okay with what happened because the bleeding stopped and he did receive platelets earlier in the day. It was just frightening. Frightening because I was trying to contend with blood coming from both nostrils, and also trying to rationalize with him that he would feel the affects of the morphine soon, but needed to be patient. A hard thing to do when you are in that much pain. Needless to say, I sat next to him, rubbed his head, and let him try to relax. Fortunately he fell asleep once the morphine kicked in. Mattie continues to run a fever tonight, so we are monitoring that as well. What you also need to keep in mind is my emotions are also frayed. I am tired, living an emotional roller coaster, and facing the worst life has to offer which is having a child with a life threatening illness. So when Mattie has these difficult moments in order to help him it comes at a large price to me, because I keep tapping deeper and deeper into reserves I did not even know existed.

I would like to end tonight's posting with two e-mails I received. The first one is from my friend Charlie. Charlie wrote, "I would say that if this week were a roller coaster, I would have been yelling to be let off several days ago. More highs and lows and twists and turns than anyone should have to deal with. Emotional swings from one end of the spectrum to the other. It sounds like Mattie's knee is progressing well; this is one of the advantages of being young and flexible even though it is harder for children to understand the necessity of these things. I am grateful to all the people who helped with Mattie yesterday and for the compassion of the Dr Abu-Ghosh who really understands the need to alleviate the pain and suffering of a patient so that the person can use their strength to heal rather than to fight off the pain. Many physicians seem to lack this understanding. Dr. Synder too, understands what is required and should be commended for showing courtesy and respect to your position as an educated parent and consumer of medical care. Many thanks as well to all the volunteers and helpers who made yesterday bearable as you and Mattie had much to deal with. I hope you had the chance to rest even though I know you are so sleep deprived that even a full eight hours will be only a drop in the bucket."

The second e-mail is from my friend Jen, who lives in Boston. Jen and I went to graduate school together at Boston College where we majored in biology. It is hard to believe that Jen and I have known each other for 18 years during which time we have seen each other through many ups and downs. Jen wrote, "I hope Easter brings new hope and a resurrection of your body and spirit....Have you heard the newest Miley Cyrus song called "the Climb." It makes me think of the intense climb all of you are facing these days...in fact it sounds like the Mt. Everest of human suffering some days. I'm glad you have wonderful friends helping your journey upward."

http://www.youtube.com/watch?v=NG2zyeVRcbs