Friday, June 12, 2009

Friday, June 12, 2009 -- When it rains it pours! Or at least it does for us!!

Quote of the day: "I have always believed, and I still believe, that whatever good or bad fortune may come our way we can always give it meaning and transform it into something of value." ~ Hermann Hesse

Today was the kind of day (though I don't know why I am writing this, because more days than not are like this now) where you have to say to yourself, WHAT ON EARTH? Just when you think things have hit rock bottom in Mattie's condition, the floor drops from underneath us so that we reach an all time low. I can barely get a handle on Mattie's lung surgery on Monday, and then to learn more bad news today was enough to send me into a very negative place.

Our day began with a phone call from the hospital. Something was wrong with the echocardiogram machines, and instead of having an appointment at 2pm, they wanted us to come in as soon as possible. So I scrambled to get Mattie ready and I paged Linda. Linda responded quickly and rearranged her schedule to help me with Mattie. Before we left for the hospital, Peter's parents arrived, and we all jumped into the car together.

Mattie had both an EKG and echocardiogram done today. Both went smoothly, Mattie was brave and patient. Before I continue on describing the day, I first MUST stop and THANK LINDA! Linda has gone through every part of this testing process with us in the past and throughout this entire week. Yes in part this is her job, but it is how Linda does her job that deserves recognition. Linda can accomplish anything, and you would be amazed what one individual can do. The work of 10 people literally! I am not sure if Georgetown realizes how lucky they are to have her. Thank you Linda! Linda also found Denise (Mattie's social worker) and she asked Denise to sit with me as Dr. Synder told me the results. That was extremely helpful.

Once the testing was over today, the cardiologist met with me and told me that Mattie's heart looked healthy and great and there were no problems. When I arrived in clinic, 10 minutes later, the receptionist connected me by phone back with the cardiologist, who proceeded to tell me that there are some changes in Mattie's heart. Basically having to do with ejection fractions, which indicates the amount of pressure it takes to pump the heart through the chambers of the heart. Lovely! At first this upset me, but after the next set of news, I quickly put the heart and hearing issues aside, because these are all TREATABLE with medication. I have either come a long way or this is a sad commentary. When Mattie was healthy if you told me he had a hearing loss or issues with his heart, I would have been absolutely devastated by this. However, now, the only thing that truly gets to me is the unknown and the news of other things popping up on Mattie's scans!

After I spoke with the cardiologist, I then met with Dr. Synder (Mattie's oncologist) privately. Before she continued to talk with me, she called Peter at work, and put him on speakerphone so that both of us could hear the information she was sharing. It was a great idea in retrospect, because Peter asked some very intelligent questions. Not that I was paralyzed, but as soon as I could see us focusing on the fact that there was a "variant" in Mattie's left femur, I lost it. I participated in the conversation for quite some time, but as Peter kept talking, I kept getting more and more upset. I spent the next 45 minutes crying and talking with Denise. Dr. Synder and Denise both expressed the fact that it is never over for us, that we can't seem to get a piece of positive news, and that they can only imagine how hard this is for us. They both talked with me about the fact that we always have choices, that we can stop treatment at any time. I actually think this is my biggest fear, that we are going to run out of treatment options. After all, we are living the osteosarcoma nightmare. Mattie has multiple lesions to begin with (which is extremely rare), the cancer has metastasized to the lung, and now we have a potential suspect to watch in the left femur. Needless to say, you might as well have shot me through the heart today, because hearing this news felt that painful. I can assure you that there is a point where information overload takes over, and then the system (or one's brain) begins to shut down. I hit it today.

I asked whether this "variant" could be biopsied, but apparently it is not in an easy location to do this. Dr. Synder has consulted with Dr. Bob on this while he is away on business the last couple of days. In addition, the PET scan results did not show any activity in this left femur variant. Sure this could be a good sign (since tumors tend to uptake the glucose tracer), however, the variant could be too small to uptake enough tracer for it to be seen. Or the other possible theory is that this variant is osteosarcoma, and perhaps the chemotherapy killed the tumor (dead tumor wouldn't uptake glucose either). That sounds good in theory, but we have learned that even with 100% necrosis (where there is no viable tumor), the tumor must come out. The only definitive way to treat osteosarcoma in the bones is to remove the bone with the tumor, even if the tumor is dead. So I sit here and ponder does it make sense to do the wait and see technique, and scan Mattie in two months to see if this variant changes? I don't know! But I do know I HATE OSTEOSARCOMA! I think the military should forget creating toxic agents, and just find a way to develop osteosarcoma as a weapon. I can't think of a better torture.

While I was having this long meeting, Mattie was at the art table having a great time. He was playing with Jenny, Jessie, and his grandparents. By the time I got out of the meeting, Mattie was busy with Barbara (Peter's mom) and she was encouraging him to eat. Peter's parents bought me lunch, and I immediately left the clinic and sat outside for over 30 minutes to pull myself together.

At around 3pm, we left the hospital, and when I got home, I left Mattie with his grandparents for several hours, and went to visit Ann's parents in their assisted living facility. Ann's mom has become my friend, and when Ann is out of town, if I can escape to visit Mary (Ann's mom) I do. Today I use the word ESCAPE literally. Sometimes it is very healing to hear a friend's concerns when you are down yourself. It helps put things into perspective, and I find helping others in turn makes me feel better. I think I get so frustrated because no matter what I do, Mattie is still sick, and so if I can bring a smile into Mary's life, I feel it has been a successful day. I decided to bring some items with me on today's visit. I gave Mary a manicure, and I stopped to buy nail polish, newspapers, and foods that I know they like. Mary was so thrilled to get her nails done, and I bought her special lotion which I massaged into her hands and arms. She said she felt so relaxed and good. It is a gift to hear someone tell that to you! After her manicure, I sat with her as she had her dinner. Tanja came to visit Ann's parents too, so we all convened for a while to talk.

When I got home tonight, Mattie was energized and animated. He has a way of wearing through people easily though. We want to thank my cousin Donna for a lovely dinner, and we also want to thank JP (our neighbor) for bringing over Mattie's favorite foods! So we had an abundance of food tonight. Thank you all for this incredible support.

I would like to share three messages I received today with you. The first one is from my friend, Charlie. Charlie wrote, "Mattie is always full of surprises. Plan for the worst and he gives you his best, coming through like a champ. I know you had very little sleep on Wed night before the scan on Thursday and I am sure even exhausted as you are that you didn't sleep much better Thursday night waiting for the results of the scan today (Fri) so I hope you get the results early and that they are good. Once again, thank goodness for the help of special staff to get you through it all; I just keep wondering why after all this time and multiple admissions, the information can't be reproduced so that it doesn't have to be repeated over and over again. Sounds like a project for a hospital improvement group to take on. Mattie's continuing ability to handle all this speaks volumes about your parenting, keep following your instincts, you're doing the right thing for him!"

The second message is from Karen's (my lifetime friend) mom. Mrs. Fischer wrote: "You are doing the impossible -- all three of you -- bearing up under this impossibly stressful and scary struggle with the unknowable. Each of you has been heroic in your endurance all the while keeping your tender loving selves together. What can I say but that I will be with you in mind and spirit in the coming days. I am trying to figure out how I can wear the Mattie Miracle tee shirt -- we're not allowed to wear tees with printing on them in the office. But I shall find a way."

The third message is from my dear friend, Lorraine. Lorraine wrote, "Goodness. An entire year went by as President of your National Association, and yet the entire year was devoted to Mattie's illness, and now your Presidency is over. Wow, that is some statement about how this year has gone. I suppose you can't even begin to consider what's next for you professionally, until Mattie's situation stabilizes and your life calms down, that this is certainly the furthest thing from your mind right now! But, it still is an amazing statement about the year for you. Your ability to write seems to come from some other compartment -- because how else could you ever be blogging daily with such clarity of thought. There are times in the blogs when you find yourself in moments of deep nostalgia, reflecting on life, when which you write very gently and eloquently. To say you are a woman of many talents is quite an understatement! Not sure if I properly told you HOW many people at Mattie's March from GW talked about your amazing teaching skills and total dedication, how students felt you were the most caring teacher they ever had. Teaching is something you are blessed with and I hope you never give it up. I know from personal experience that you are gifted as a teacher."