Quote of the day: "Generosity is giving more than you can, and pride is taking less than you need." ~ Kahil Gibran
Before I begin tonight's posting, I want to thank my osteosarcoma friends for writing to me last night after reading the blog. I truly appreciated your insights and support. It is funny how we haven't met each other, but some how know each other already through reading about our children on their respective websites. The ONLY positive about cancer from my perspective is it unifies you in a very deep way with others who have experienced cancer personally or with a loved one.
Mattie fell asleep at 9:30pm on Friday. It was unheard of because Mattie hasn't gone to bed that early in months. However, he had a busy and active day in the clinic, so I think this helps to explain his need for sleep. Peter spent the night in Mattie's room and assisted him with bathroom runs, while I got a full night of sleep. Since Mattie went to bed early, he was up very early too.
I took Mattie to clinic today for a blood check. I was planning on being in clinic for a while, in case they decided to give Mattie a platelet transfusion. I brought a whole backpack full of activities for Mattie, but to my surprise, when we got to the clinic, Jenny and Jessie left three special toys for Mattie on the art table. The toys had a sign on them which read, "For Mattie B." I can't tell you what a special treat that was to see these toys, and Mattie was thrilled. Thank you Jenny and Jessie for looking out for Mattie even on the weekend!
I also received a lovely e-mail this morning from Tamra (a SSSAS upper school mom, who we have developed a friendship with). Tamra offered to bring Mattie and I lunch in the clinic today, and she was going to bring her daughter, Louise, with her, so that Louise could play a little while with Mattie. Mattie enjoys Louise's company, so I was so appreciative of this offer.
After we settled into clinic, Mattie's blood was taken. Because it was a Saturday, lab results came back much quicker. Mattie's platelet count was 16 on friday. Typically Mattie is tranfused when his platelet level is 20 or below. Dr. Synder wanted to see if Mattie's platelet level would start rising on its own without a transfusion, which is why Mattie wasn't transfused on Friday. However, Dr. Synder wanted Mattie back in clinic today to get a reading of his platelet level, to see which direction it was moving. Mattie's platelet level today was 18. Dr. Shad decided not to transfuse Mattie today either. Now in order to qualify to receive chemotherapy on Monday, Mattie's platelet level must be 50 or higher. I am told that it will be virtually impossible for Mattie's platelet count to jump up to 50 by Monday. Therefore, I am expecting that Mattie will receive only his MTP-PE infusion on Monday, and perhaps his platelet level will naturally rise to 50 by Wednesday. Most likely we will start the High Dose Methotrexate infusion on Wednesday or Thursday. I believe the thinking is that the doctors could artificially raise Mattie's platelet level with a transfusion, but since his count continues to be low, then it really means his body needs more time to heal, before starting another round of chemotherapy.
When I found out that Mattie wouldn't need a transfusion, I called Tamra to let her know we would be leaving clinic. Tamra was kind enough to drop off lunch for Mattie and I at our home instead. Thank you Tamra for a tasty lunch, and for the chocolate treats! That was so thoughtful of you.
The rest of the day was a big blur. It was a blur because Mattie was very demanding, wanted our constant attention, and when he did not get it, he melted down. I can assure you parenting a child with cancer is down right complicated, because a seven year old still needs structure and discipline, but it is hard to implement. Peter did some chores around our home today, and cleaned up our front deck, which is wonderful and makes it more useable now. After Peter did that, Mattie wanted to go on a walk and picnic. So we packed him up and brought some of his favorite foods. He told me exactly what he wanted to eat, but naturally when it came time to eat, he couldn't. His appetite has been severely affected by the last round of chemo. We walked down to the Washington Mall this afternoon, and found a lovely place to sit for a picnic and to watch people, dogs, and birds. Peter snapped a picture of Mattie and I on the picnic blanket.
We walked around by the Potomac river as well. When we came back Mattie had a visit from JJ, our resident Jack Russell Terrier. JJ also brought Mattie a pizza today. Thanks JJ! It was a long afternoon though. Mattie and I read many books together, played with Legos, and even did puzzles together. It came to the point that Mattie wanted to go out for a second walk, which we did.Later in the day, I dealt with the chore of laundry, so that I wouldn't have to worry about it next week while we are in the hospital. Mattie and Peter spotted another mother Dove on our deck today, and she is sitting on an egg. We never found out what happened to the first mother Dove who was sitting on two eggs. When we got back from the hospital after being there a week, she and her eggs were gone. But Mattie is very excited that we have another Dove to follow.
Mattie experienced a great deal of nausea today, so tonight Peter gave Mattie IV Kytril. It is our hope this will help, but this prolonged nausea is a new one for us, because typically the nausea has subsided by now. Needless to say Mattie was very moody today, and yet full of energy, but not sure how to occupy his time. I can't tell you how difficult this is to manage, especially when Peter and I are SO tired and do not have much to give. It is hard at times not to let Mattie's mood affect us, and these moods impact our family life. The joys one has in a typical family for the most part are no longer part of our lives any more. For example, we used to enjoy eating together but with Mattie's constant nausea and the stress his illness puts upon our life, eating is no longer a joy, and rarely will we eat together. We attempt to, but one thing leads to another, and Peter and I spend a good portion of meal times jumping around. This is just one example in a whole long list of things that have changed in our lives which makes our family's life complex and challenging. So yes we contend with cancer, and its physical ramifications, but the physical ramifications have real world psychological consequences that also impact our quality of life. So in my perspective cancer attacks the family holistically, which is why it makes it so hard to cope with and accept.
I would like to share a message I received from my friend Charlie. Charlie wrote, "Friday's blog was so difficult to read. So many choices of how to proceed and none of them very positive. I wish there was a guarantee of success somehow but I don't think that will be forthcoming. I don't know how you are supposed to make these decisions without constantly second guessing yourself. I think from the tenor of your blog I know what you will decide but I don't envy you these decisions. I hope and pray you find the right surgeon for Mattie; I hear how important not just his or her surgical skill is but also the ability to connect and communicate with you and your family. Many thanks to the art therapists who kept Mattie busy all day yesterday so that you could concentrate on these critical upcoming decisions. It was truly a gift that you could leave him safely in their hands and be able to focus on all this medical discussion. And also thanks to the doctors who give graciously of their time, especially when they give that time without charge. May their gift be returned to them a hundredfold."
I have befriended a mom in Nevada whose son, David, has osteosarcoma. Kristi maintains her son's website as well, and about two days ago, I read a wonderful poem she composed and I asked her whether I could post in on Mattie's blog. Kristi welcomed me to do so, and I changed some of the children's names in this poem to reflect our situation. Thank you Kristi! So I end tonight's posting with Kristi's poem!
Osteosarcoma turns beautiful young children into warriors wise beyond their years. Fighting battles that only they can face. Deciding to endure, they hang up their lives on a hook in the corner. Soccer jerseys, football helmets, hockey sticks, basketballs, scooters, bicycles, dirt bikes, skateboards, and Barbie dolls stand still and silent now. They are armed anew with the uniform of the cancer patient. Broviac catheters threaded deep into their chests, bald heads, bodies hairless and thin and covered with scars. Limping slowly and steadily on heroic limbs absent of their natural bones, they just keep moving forward. They are all tremendously brave kids. Many I only know through a website such as David, Lauren, Paul, Sammie, and Emma. I know these children's lives have forever been changed by an uninvited monster called Cancer, Osteosarcoma in specific. These children live from hospital visit to hospital visit; chemo to chemo; and (in Mattie’s case) from surgery to surgery. I don't know any adult, who could handle the brutality of this life, and yet I watch my son, and other brave children endure it. Are they happy about it? NO! Do they do it anyway? Yes, they do. They put life into perspective. They prove what is really important and what is trivial. And I have seen more courage in these children, who I have watched go through this, and wonder if we adults could handle this as well? I know I wouldn't handle it as well as these children have. I am so proud of them! They are truly amazing and I really wish all of you could know them for their stories of bravery would touch your lives forever.
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