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, 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 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."
1 comment:
YEAH!! I am so happy to hear that Mattie's hearing test was good!! It's about time you got a break.
Post a Comment