Thursday, September 25, 2008

Thursday, September 25, 2008

Mattie had another night of IV hydration on wednesday. However, thanks to Peter, he handled most of the up and down bathroom visits that Mattie made. I was just too tired to move. But with that said, I still felt like I pulled another all nighter last night. I am amazed how Peter can balance our home life and work. It is a special feat that goes beyond comprehension. To say this is hard on Peter and I is an understatement. It becomes a daily struggle for us to keep our heads above water on everything in our lives, such as taking care of ourselves physically and emotionally, and of course it is almost impossible to have a moment to connect as a couple and have a peaceful dinner or to just chat for even 15 undisturbed minutes.

I woke up before Mattie this morning and wanted to take a shower before the day got away from me. I told Mattie that I was going to be a few minutes and asked him if he had to use the bathroom or needed anything before heading to the shower. He answered, NO! When I left him he was resting in bed and was connected to an IV pole for hydration. First mistake!!! I have learned.... Never leave a six year old unattended with an IV connection. So while showering, I heard Mattie screaming for help. I stopped the shower, covered in shampoo and ran out with a towel wrapped around me. There in the hallway, I found Mattie holding his IV bag, without the pole, and blood flowing into the IV tubing. At first I panicked because I thought he pulled on his central line by his chest. But after taking a deep breath, I realized that because he moved around, and was probably struggling to get the IV bag off the pole, this caused some back flow of blood through the IV tubing. Fortunately I had seen this happen before in the hospital, and knew what to do. But to say I wasn't frightened at first would be a lie. Mattie was also besides himself and was crying hysterically. We were a pretty sight this morning!

Mattie and I spent the morning building legos and then had a nice visit from Judith Brusseau, the Director of Religious Education at Holy Trinity Church in Georgetown. Mattie was scheduled to start CCD classes this fall, but because of his medical condition is unable to. When Judith heard about Mattie's situation, she was eager to meet with us and help in any way she could. Judith is willing to work with Mattie on a CCD curriculum this year, and she came over today and shared some wonderful books with us. Unfortunately, Mattie was in a grumpy mood and did not really want to engage with Judith. Any parent can relate to this embarrassing moment, when your child isn't cooperating and somehow it is hard not to let this reflect poorly on one's self. But I know Judith understood that there are good and bad days, and Mattie was having a rough morning. Judith is a special lady, and she too has been touched by cancer. She lost her son at a very young age to cancer, and she clearly related deeply to our struggles. Despite cancer being such an awful and life altering disease, I find it amazing how it also can be a unifying and bonding experience. In fact, I have witnessed that I am able to bond with complete strangers over this issue. Judith gave us a special gift today, a book, entitled, Little Tree: A story for children with serious medical problems. This was a very inspiring book. The basic premise is a tree will always be a tree, despite losing limbs and leaves. Trees are beautiful through all their changes, because it is what is at the core that matters. A very powerful story especially for a little boy who has lost his hair and thinks he looks ugly and is embarrassed to go out in public without a hat. Thank you Judith for the lovely book and visit.

After Judith's visit, I administered G-CSF to Mattie. I have learned my lesson on this, because yesterday I tried to insert a syringe into a dextrose solution bag (since I need to flush Mattie's line with dextrose before giving him G-CSF). I guess in my tired state, the syringe slipped and went instead into my finger. Needless to say, I won't be making that mistake again any time soon. Mattie did fine through the administration and then we headed over to Georgetown to meet with Dr. Toretsky. Mattie had his blood work done today, and we learned he is again severely neutropenic (his Absolute Neutrophil Count is practically zero). However, having gone through this already, I wasn't as startled by this, but naturally I am concerned about this because Mattie is headed to New York on tuesday. In the midst of answering my concerns about Mattie, Dr. Toretsky also inquired about Peter and I. I think it looks abundantly clear that I haven't slept well in days. So Dr. Toretsky took out his prescription pad and wrote me two prescriptions. Not for any kind of medicine per se, but instead for: 1) "an evening out to include dinner and CONVERSATION" with Peter, and 2) "a good night of sleep, minimum of 8 hours." Dr. Toretsky has a good sense of humor, but there is a lot of truth in humor, and I was particularly moved that he would even be interested in how Peter and I were doing. But then again, if you don't take care of the caregivers, there will be no one to take care of the patient. While I was talking to Dr. Toretsky, Mattie was busy sculpting with clay. Below you will see a picture of his "big head" clay series, and a beautiful bowl he made with a butterfly in it.



Left: Big Head

Right: Bowl with a butterfly









After our visit to Georgetown, my parents and I took Mattie out for an early dinner, in hopes of getting him to eat something. Mind you when Mattie was at the clinic today, he was inspired to eat half a sandwich because Jenny and Jessie (the wonderful art therapists), were eating along side him. Now if I could only travel around with them, I would be all set. Not to my surprise, Mattie basically did not eat dinner. But it was nice to get out and eat something. Also over dinner, I had the pleasure to hear about the imaginative game Mattie has been playing with my parents. He has created a special playhouse in their apartment out of packing boxes. The playhouse apparently is guarded by Captain Mattie, and there are other characters in the story who are trying to invade the playhouse and Mattie has to defend it in the most clever and creative ways. It made for a very fun dinner conversation tonight. This reflects the beauty of playing with grandparents because sometimes we as parents are just too tired or innudated with other things to take the time to play in this manner.

Today, Mattie received a wonderfully large card from his soccer team, "The Superstars." He really enjoyed it. In addition, Mattie received a special gift from Karen. Candles from the Vatican! On the electronic front, thank you Emily W. (happy vanilla milkshake day too)
Susan (I think we all could get a lot out of joining a donut support group), and Karen (happy pancake day) for the wonderful e-cards and JJ (our resident Jack Russell Terrier) for his wonderful e-mail. JJ is away on vacation, and Mattie misses his canine buddy. I want to thank the Wright family for the delicious chili. Peter LOVED it and Mattie enjoyed the corn bread earlier today! I end tonight with a beautiful prayer I received today from Kathy Harris, one of Mattie's preschool teachers at RCC. Kathy received this prayer a long time ago from her Grandmother. Thank you Kathy, I will reflect on this often.
May God give you...For every storm a rainbow. For every tear, a smile. For every care, a promise. And a blessing in each trial. For every problem life sends, a faithful friend to share. For every sigh, a sweet song. And an answer for each prayer.