Wednesday, February 25, 2009

Wednesday, February 25, 2009




Quote of the day: "If there must be trouble let it be in my day, that my child may have peace." ~ Thomas Paine

Mattie had a good night of sleep, of course sleeping through the night is a thing of the past, especially when on IV hydration at night! Mattie had a hard time waking up this morning, so much so that I got up before him. When he discovered I wasn't in his room, he called for me and asked that I come back and cuddle with him before he got out of bed. So back into bed I went! Since Mattie was a baby, I have always enjoyed rubbing my face against Mattie's. There is something so sweet and precious about this "baby" type of skin against your own. It is these special moments that I love capturing, and it is hard to have these cuddly times this year, while living inside a fish bowl. While I was next to Mattie this morning, I felt the need to break the news to him that he could potentially be headed back to the PICU on thursday. I wasn't sure how he was going to handle it, but I explained why going back on thursday would be a good thing. That would mean that his body is strong enough to continue the fight against the bone bugs. Of course that is our ultimate goal, to wipe out all bone bugs. He is very cognizant of that goal, and basically was fine with going back on thursday if he had to. In a way I was surprised by this reaction. I know Peter and I are not fine about going back, but I think Mattie has bought into the healing process, and also understands that Peter and I will always be with him. No matter what. I think that on some level this is very comforting, so it all reality it doesn't matter where we fight the bone bugs, as long as we are together on this mission.

Mattie and I headed to the hospital at 12:30pm. We were making good timing, until we had to deal with parking at the hospital. Parking is a true experience at Georgetown. We tried one parking lot, but it was completely full, so we headed to the next one. We lucked out there! I continue to be amazed how few disabled parking spaces there are at a hospital. Trying to unload Mattie's wheelchair and get him into it safely in one of those tiny parking spaces is a feat! I wheeled Mattie into the Lombardi Center, where he met up with Jenny and Jessie. They had all sorts of projects ready for him. Mattie had his vitals taken and his blood drawn to determine his Absolute Neutrophil Count (as a reminder his ANC had to be 1500 or greater to qualify for chemo on thursday). Mattie was thrilled that the clinic room he was assigned to was his "cockroach" room. So I pulled out the camera, so you could see what his roach looks like on the ceiling in the room. Enjoy! I am happy it is in the clinic rather than in our home.

Mattie spent some time with Jenny and Jessie, but pretty soon there after, we met up with Linda and headed over to his audiology appointment for an audiogram. As many of you will recall, when Mattie had his second audiogram in December, I was very upset. I was upset because the audiologist reported to me a hearing loss in both of Mattie's ears, with the right ear being more significant. In addition, at that time, she identified the fact that Mattie was having trouble hearing certain tones, high pitched, to be specific. So today, I had no idea what to expect. To me Mattie's hearing hasn't significantly changed when I deal with him on a daily basis, but I have learned to understand that you can't take things on face value anymore. Linda and I accompanied Mattie through his testing. A portion of the hearing test is done in a sound proof booth. It is like walking into a bank vault. I happen to love this room, and wish I could take it with me to the PICU. After the testing was over, of which Mattie was very compliant (he actually finds the process fun!), I met with the doctor, while Mattie waited with Linda. Linda brought a whole cart of activities for Mattie, of all his favorite things to do! Linda is a God sent. Anycase, onto the exciting news. Mattie's hearing is great. It is at the same level it was before all the chemo started in August. In fact, it appears that there is NO change in his hearing. I asked the doctor how she explains December's results. She said that he could have had fluid or some sort of pressure in his ears that affected the testing. But to her knowledge the chemo so far does not seem to be impacting his hearing. I practically wanted to hug the doctor, but did not. This was the one piece of good news we have had in a long time!





Mattie, Linda, and myself headed back to the clinic to find out Mattie's blood test results. On our way, we wheel through a corridor that has a pretty steep ramp. Mattie literally rode a rollercoaster today. He went on top of the ramp, and wanted to be let go, so he could fly down the ramp in his wheelchair. Normally I would say NO to this, but he really wanted to do this, so Linda and I let him do it. He loved it so much, that when he got back into the clinic, he had Jenny and Jessie come out and see him do this again. Linda snapped a picture of Jenny and I running next to Mattie's wheelchair as it was heading down the ramp. Mattie had a great time today doing this, and his laughter rings in my ears even tonight as I write this.

Mattie enjoyed his time with all his "ladies" today. Mattie had a good time in the clinic, and continued playing with his made up character, Pinky. You may recall, that Pinky is quite a handful. She can be very defiant toward her parents, and she turns out to be quite a risk taker. Mattie continued his play scenario with Jenny and Jessie. Almost as if he picked up where he left off on Monday, except this time the location of where Pinky and her family lived changed. This time they lived near an abandoned airport, not a large trash shoot. I find these settings fascinating. Each place involves risks, big ones actually. On Monday, Pinky kept falling down the trash shoot, and today, Pinky kept visiting this abandoned airport, where she would play on planes that were literally falling apart while she was flying them. In today's play Mattie was VERY focused on Pinky taking risks. He wanted her to continue to take them, over and over again, even though he knew that the plane he was putting Pinky on was dangerous. But he kept insisting and really wouldn't budge from this scenario, despite our best efforts to add other components or themes into the play. We did not have as long to play today, so we weren't able to work through some of what he presented. But I have been thinking about it all afternoon. Part of me thinks that Mattie feels similar to Pinky. That each day he takes risks (scans, tests, chemo, living in a PICU, etc...), and for him these risks are necessary and important. You can't avoid these risks, and instead you have to just accept them, work with them, and continue to take them on. So the fact that he wanted Pinky to keep confronting the risks of flying an old and abandoned plane, when taken in this context, is not that unusual, in fact it makes sense. I did not see it at the time, but I am appreciating his insistence with the direction of today's play.

Mattie and I headed home this afternoon, and we played with his legos, had a visit from JJ (our resident Jack Russell Terrier), and then watched a few Scooby Doo episodes together. When Peter came home this evening, he had a gift with him. My lifetime friend from NY, Karen, mailed us a package to Peter's business address. She promised me chocolate one night if I actually went to sleep and let some things go. Apparently I did a good job, and today I was rewarded with NY fudge. Mattie also loves his hologram book! Thanks for these special treats. We had a nice dinner this evening thanks to the Bires family. Thank you for all the goodies too! After dinner, I baked a load of cupcakes to take to the hospital tomorrow. Mattie has gained some weight back and I attribute it to eating cupcakes. He is eating them like they are going out of style, and frankly I don't care what he eats, as long as he eats something. I have yet to pack for tomorrow's hospital stay, but I have that ahead of me this evening.

I just can't get over the fact that we left the hospital on sunday, and now are headed back for another four or five days with Methotrexate. The plan is that after Methotrexate, Mattie will be allowed home for a few days, and then on March 5, he will come back in for cisplatin and doxorubicin. I am told that Mattie most likely will become sick from that round, develop neutropenia, and then head back to the hospital during our two weeks of "off" time. So when you look at the next few weeks in total, I am wiped out with the thought. I can't really describe the level of fatigue Peter and I are living with, because it is like no other I have ever contended with. Unfortunately when you are this tired, nothing seems, feels, or is right in the world.

We want to thank Joan Holden, Mattie's head of school, for the beautiful handwritten letter of support she wrote to Mattie. It means a great deal to all of us. I end tonight with a message sent to me by my friend Charlie. Charlie wrote, "Once again the blog brings home to us all that time is one of the most precious gifts any of us can give another. It was so kind of Ann to give her time to Mattie so that you and Pete could reconnect with each other. The lovely thing is that she was successful in making Mattie feel as though he was the center of attention and the reason for her visit and not the desire to allow you and Pete some free time. That is a real talent. Mattie clearly enjoyed his time with her and that is another indication that when the time is right Mattie will be able to reconnect with others in positive ways."