Monday, December 22, 2008

Monday, December 22, 2008


Quote of the day (thank you Camille!): "If you take a flower in your hand and really look at it, it's your world for the moment." ~ Georgia O'Keefe


Mattie and I had a late night on sunday. Mattie did not fall alseep until about 12:30am and once he was down, I worked on the blog and then wrote Christmas cards of thanks to all of Mattie's nurses and some staff members. I felt the need to do this, because I can't think clearly in the hospital and usually wouldn't have time to write anything coherently during the daytime hours. When we woke up today, one of the first things I did was open up a very special gift basket sent to me by Kathryn (a SSSAS upper school mom). The basket was filled with such meaningful and moving gifts, everything from a booklet about a prayer service given on Mattie's behalf to rosary beads from the Vatican. The St. Francis coin was so special to receive along with the worry stone. Kathryn gave Mattie several gifts as well, and we plan on opening those soon!

This morning our goal was to try to get to the hospital by 9:30am. That did not happen, since each time I leave for the hospital, I feel like I am moving our home from one place to another. This time was more cumbersome, because I wanted to bring Christmas things with us! With Mattie in a wheelchair still, there is no way on earth I can bring him to the hospital without help and a second car. Mattie's wheelchair alone weighs a ton and also takes up my trunk. My in-laws helped me get to the hospital today, and took every item I needed in their trunk. So that I only had to worry about Mattie and the wheelchair. That was a major help. As you know, it was downright frigid today in DC. Just moving outside was painful, much less trying to transport anything. Thank goodness I applied for a disabled parking permit from the District of Columbia. When I am with Mattie it is a lifesaver to have.

We brought Mattie to his room in the PICU, room 1. My favorite! I am being sarcastic, since it is the noisest room in the unit! While I was getting Mattie situated, Barbara and Don (my in-laws) transported every bag in their trunk to our room. They stayed with me the whole day and helped in every way possible by entertaining Mattie and distracting him so that I could talk with the doctors and nurses. Which today, took up half of the day. There were many mishaps, and I needed an extra hand with Mattie, so that I could get things done.



We want to thank the Fortune family for a wonderful lunch. It fed all of us, and saved us a trip out in the cold weather to get food. The dessert you brought us was amazing, something sinful from Starbucks, with vanilla frosting and cranberries on top! I appreciate Danelle bringing all the gifts we are distributing to the hospital as well. We can't thank you enough for all your support and for helping take some stress out of our day. Mattie had a special visitor today, Bob Weiman. Bob is the head of the lower school at SSSAS. Bob has many gifts and talents, and he was generous to share part of his day off with us. Bob taught Mattie three great magic tricks today. Several of which Mattie later performed for his nurses. Bob even showed Mattie how to create a jib jab greeting card. It was hysterical. We got to watch an automated JJ and other Mattie favorites. I was jumping in and out of the room all afternoon, so having Bob around also helped Mattie focus, be engaged, and have fun while I couldn't be there.



Well if I were you, I would be asking, what was she doing? Where to begin. The thinking was to get Mattie to the hospital this morning as early as possible to start the hydration process and blood work to qualify for chemo. Normally we get started later in the day, and today we made an effort to be at the hospital by 10am. Well the hours started rolling by, and one thing led to another, and needless to say Mattie did not start chemo until 6:30pm. Do you love it? We waited from 10am until 6:30pm! WOW! Why scramble around in the morning, just to sit and wait? What started the cascade of issues was our nurse, Tricia explained to me the chemo process we would be following today. Tricia knows I ask her this question each time, and in fact I would ask any nurse to review the process with me before they infuse anything into Mattie. So today Tricia mentioned a drug called Dexroxazone. She described it to me as a heart protector. But I did not recognize or recall this drug name, and I told Tricia that Mattie never received this drug before. So I started to get concerned! If he really needed this drug, why did he not get this drug the first two times he received Doxorubicin and Cisplatin? All of this raised enough doubt in my head, that I felt the need to follow up on this. We spoke to Dr. Myers who basically explained that Dexroxazone wasn't available anywhere in the country. It is backlogged and not being made. Second he said that Mattie isn't getting a high enough cumulative dosage of doxorubicin/cisplatin to be of concern for developing a serious heart issue. Got to love it, no? As if any sort of heart damage would be acceptable. So he told me that I should trust him and Dr. Toretsky. If they thought Mattie needed this drug, they would have given it to him. Now that is the kiss of death and major red flag in my book. When you tell me that I should have such blind trust in such a decision. That trust is frankly earned and so far what I have learned from this process is to trust NOTHING. Verify everything! So I decided to call Dr. Shad, the director of the Lombardi clinic. I usually turn to Dr. Shad, when all else fails or I am in a quandry. Dr. Shad told me she would look into this issue and call me right back.

Dr. Shad let me know that Dexroxazone was not in Mattie's initial chemo protocol (the osteosarcoma clinical trial). This would explain why Mattie did not get this medication during the first two doxorubicin infusions. However, since we changed treatments, and removed Mattie from the clinical trial, we are following a different road map and the new road map calls for the use of dexroxazone. Dr. Shad assured me that NO where in the country is dexroxazone being made and people do not have access to it. I asked her what happens to people on high doses of cisplatin and doxorubicin? She said that their dosages are lowered to more tolerable levels until dexroxazone can be manufactured for the patient. The whole thing sounds absolutely crazy! Got to wonder about this drug company! I guess what truly plagues me about today was the simple fact that I was not alerted by the doctors of this change (that dexroxazone is part of the new protocol and wasn't a part of the previous protocol, and better yet, that Mattie wouldn't be getting this drug because it isn't available). I don't think this is a nurse's job to have to deliver me this news. I also do not care for the attitude that a parent should be kept in the dark, that a doctor makes the decision and delivers information on a need to know basis. That REALLY DOESN'T WORK FOR ME! Not when we are talking about Mattie's health. I have to live with whatever treatment decisions doctors make, and that is just it, for doctors they are decisions but for me these decisions impact my son's life and quality of life. So what has this little run around accomplished today? It has succeeded in proving that I have to be nosey, that I can't trust what is going on in the background, and I always have to ask questions. This also proves to me the beauty of quality nursing staff. I have utmost respect for our oncology nurses and their honesty, concern, and forthrightness are valued and respected on the part of the consumer. As Peter tells me all the time, a hospital is a business, and ultimately answers to the consumer. Interesting!



At 6:30pm, Mattie's chemo began. Mattie was sitting on the floor playing with boats (that Jenny and Jessie made out of tape for him today.... thank you, because I was desperately searching for boats for him to float!) and Tricia got down on the floor to start the chemo. I snapped a picture of her in motion. She is an example of a fine nurse and person who goes above and beyond the call of duty! Pay close attention to those fabulous thick blue rubber gloves Tricia is wearing. It makes you understand the dangerous nature of the medicines going into Mattie's body. Mattie started doxorubicin tonight (which takes about 30 minutes to infuse), that will be followed by cisplatin (for four hours). Doxorubicin is red in color, and this red color gets secreted when Mattie's goes to the bathroom. It is interesting to see your son's urine turn a funny red color. This whole infusion is a 48 hour process, and doxorubicin and cisplatin will be adminstered again tomorrow evening at 6:30pm.

We received a wonderful dinner tonight from the Putnam's! Thank you for the wonderful pasta and a fantastic salad. I couldn't get enough of the salad and Mattie had two plate fulls of pasta! Thank you for supporting us as we transitioned back to the hospital. We had a good time delivering gifts today. Several of the nurses are already wearing Mattie's wrist band which says,"Stomp it out for a Mattie miracle!"That meant a lot to me to see them wearing this gift and it is our hope that they enjoy all the gifts and realize how much we value their professionalism.


I received two e-mails today that I would like to share with you. The first one is from my colleague and friend, Camille. Camille spearheaded a fundraising effort for Mattie with our local mental health counselor association. Camille wrote, "Just wanted you to know we had a good day here as well. First let me say I love the picture of Mattie with the wreath!!! Yesterday at the Networking, Fundraising, Holiday Gathering we had a 50-50 raffle, a silent auction, and a basket for cash and checks. The winners of the 50-50 donated their winnings as well. All five pieces in the auction went. So far, we have collected more than $650. There were also cards, prayers and positive energy for you, Peter, and Mattie. Some felt that donating reflected the meaning of Christmas. Some folks who couldn't make it, asked about donating and may donate through the blog or send it directly to you."

The second e-mail is from Debbie, Mattie's art teacher. Debbie wrote, "I had an interesting experience today at the Gem show in Chantilly. I was speaking with a salesman about his beads when my eyes filled with tears. He said that he could not do better on the price. I laughed a little and told him that it was my Mattie that was making my eyes tear not his prices. With that he took my hands and began to pray to God for Mattie. Imagine, right in the middle of a quagmire of people grabbing stuff like it was the last time they could shop! His voice was really loud and I started to shake. Anyway, his words were just beautiful." What can you say about a stranger who feels compelled to pray for your son, a person he never met? Other than leave you with great appreciation and admiration for his sensitivity and thoughtfulness.

We want to thank Peter's parents for helping us over the last four days. Mattie enjoyed connecting with them and I enjoyed a moment to myself to do the normal things I used to take for granted. I will be reflecting on these four days over the course of this week. As I sign off for the evening, I want to wish our readers who celebrate the Festival of Lights a very happy Chanukah!