Thursday, August 27, 2009Tonight's Mattie creation features a lovely piece of pottery Mattie made for me in the Lombardi Clinic. He actually used a pottery wheel and spun this vase, and then glazed it himself with his favorite color, red!
Quote of the day: "Life is eternal, and love is immortal,and death is only a horizon;and a horizon is nothing save the limit of our sight." ~ Rossiter Worthington Raymond
I want to thank many of you for writing to me today and letting me know we were in your thoughts and prayers, as Mattie headed for a CT scan. In fact, we also had several nurses and other Georgetown Hospital staff write to us today as well, lending their good thoughts, concerns, and prayers. It saddens me that it took such a tragedy for me to see the amazing community I am surrounded by. Today was the perfect example of community. I have felt this way for a long time about Georgetown, but after today, I can see why the hospital has become our second home. Peter and I practically know someone on each floor of the hospital. When we brought Mattie to clinic, Jenny, Jessie, and Linda greeted Mattie. Mattie was actually some what animated and played with Jenny and Jessie. They were showing him some wonderful seashells they collected, including the sand. Mattie was intrigued by this, which was lovely to see, since Mattie spent many happy days digging in his own sand box at home and the huge sandbox at RCC (his preschool). While Peter stayed with Mattie in clinic, Karen and I went to the admissions office to register Mattie for his day procedure. I am so accustomed to registering Mattie, that I know most of the staff and the entire routine. Karen was getting a kick out of me, and my level of directiveness.
Before we headed to the CT department, Tamra stopped by clinic. Tamra is a fellow SSSAS mom and new found friend. Tamra and her family have been incredibly supportive of us this year, and we are so grateful that Tamra prepared us a beautiful lunch. She presented it in a lovely picnic basket, with linens, plates, and all sorts of goodies. Thank you Tamra, for making me feel special! Tamra took my parents out to lunch today, which was very kind of her, since scan days are HIGHLY stressful! Thank you Tamra for all that you do.
When we wheeled Mattie down for his CT scan, Linda was accompanying us and helping us every step of the way. We also met up with with Jey, our favorite CT tech, and Mattie's "big brother." The news of Mattie's terminal status has hit Jey hard, but despite how he feels, he never misses the opportunity to see Mattie and support us. Jey is one of the special people who works at Georgetown, who makes us feel like we are a valued part of the community. In addition, Debbi, our sedation nurse angel, was on the scene. When Debbi is present things ALWAYS go smoothly. Debbi has been by my side since the beginning of this ordeal, she is not only a phenomenal nurse, but a compassionate and understanding person. We would be lost without her. The CT scan process went smoothly, and I am thrilled we elected to sedate Mattie. He could never have made it through the process without it. He operates in a highly anxious state now, and to me Mattie has nothing more to prove. If doing a test under sedation is what he needs, then so be it. Even if the test is only five minutes!
After the CT scan was over, Debbi and Dr. Eric (the wonderful intensivist who helped us throughout the cyberknife ordeal), wheeled Mattie back up to the PICU. Mattie recovered there. However, we asked that Mattie be kept under sedation for a longer period of time, so we could give him a bath, change his central line dressing, take off old Fentanyl pain patches, clip his nails, and give him a suppository for constipation. Debbi and Dr. Eric were very kind and understanding, and helped me every step of the way. Debbi literally helped me change Mattie and bathe him. Mattie was surrounded by a lot of love today in the PICU recovery room, and what I began to notice was I was an integral part of the team. Debbi and Dr. Eric allowed me to change Mattie's dressing myself and to clip his nails. In fact, Dr. Eric said that clipping nails is not allowed in the PICU. It is actually considered surgery. So today, I became a surgeon by PICU standards! Debbi approved me to do this, because she told everyone I most likely have been doing this to Mattie since he was a baby! Dr. Synder also came into the recovery area while I was changing Mattie's central line dressing, and was impressed how I did this. Again, remember I was trained by the best nurses around, and as Debbi said, of course I know what I am doing, I have been doing it for over a year! Despite the fact that Mattie is dying, and my world is falling apart, I find that I am being surrounded by incredibly competent and loving individuals who can't do enough for me. We want to thank Katie and Kathleen (two of our wonderful HEM/ONC nurses) for supplying us with bath items and coming to visit us in clinic! So today I realized that Peter and I paid our dues and then some this year, but in the midst of this crisis we are really embraced into the Georgetown Hospital family. That means a great deal to me, and this is a feeling I will never forget.
Mattie was transferred back down to the Lombardi Clinic, so he could rest, and allow the sedation effects to wear off. While waiting, Dr. Synder met with Peter and I. She let us know that the tumors were stable, so apparently the Cyberknife was somewhat effective. However, the tumor in the pleural cavity grew slightly and another tumor popped up in the lungs. There doesn't appear to be fluid build up in the lungs at the moment, which is good. We spoke to Dr. Synder about changes in Mattie's anti-emetics. Apparently there are different receptors on our cells that can control vomiting. Right now Zofran and Kytril, Mattie's current anti-emetics, only target only one type of these receptors. So we are going to try to add another anti-emetic that targets a different receptor, the only issue is this medication is oral. A big problem. So we are trying to work this out. In addition, we learned that Mattie is very constipated today, and also has an accumulation of barium (which can actually act like cement in the intestines) in his system, from when he took the CT scan on August 5th with oral contrast. So we are giving Mattie suppositories so he doesn't get a bowel obstruction. None the less, he is scheduled to go back to the hospital on Tuesday for more sedation, so he can get an enema to hopefully flush out his system. It just never ends!
We spoke with Dr. Synder about two chemotherapies. We are really unable to start oral VP-16 until Mattie's nausea is under control. We would like to try to start that next week, and in addition, we would like to add Avastin to the mix. As you may recall, when Mattie's pathology report came back, his cells had an inordinate number of Vascular endothelial growth factor (VEGF) receptors. Avastin (bevacizumab) is the first U.S. Food and Drug Administration (FDA) approved therapy designed to inhibit angiogenesis, the process by which new blood vessels develop and carry vital nutrients to a tumor. Avastin has been shown to be effective with tumors having VEGF receptors. So we are still pursuing options to help manage Mattie's pain.
We spent most of the day at the hospital and did not get home until 5pm. Once Mattie was home, he was exhausted and spent a chuck of the rest of the day watching Sponge Bob videos. While he was in good hands with Peter, my parents, and Karen, I headed to see Ann's parents. Ann's dad is quite ill, and I wanted to try to help out this evening before Ann arrived home. I brought dinner for Mary, did her nails, and also brought Mattie's DVD player with me so Mary could see the 50th anniversary video that Ann made for her. I felt all these things would be a much needed distraction from her daily routine. Before I left for the evening, Mary and I both agreed on something, we don't understand God's plan for either her son or Mattie. She then said, no matter what happens to her, and even when she eventually dies, she will always be thinking of me and saying a prayer for me. I told Ann tonight that I am not sure when I received a more touching a loving comment.
When I arrived home, Mattie was still sitting on the couch and watching videos. Karen and I had dinner together, and then I switched with Peter, and Karen sat with him while he ate dinner. Karen served and cleaned up dinner plates, which was very helpful and one less thing for me to worry about. While I sat with Mattie, he had me watching a science channel show about pest control. I had to see one house with over 100 rats! If this isn't love, I don't know what it is!
It is 12:30am, and Mattie is still wide awake, and vomiting. Peter is exhausted, and I am determined to get him out of the house tomorrow. He refuses to leave Mattie's side, and Mattie refuses to part with Peter either. But Peter can't keep giving without taking a break, so that is one of my missions for Friday. Wish me luck on that!
We want to thank the Murphy family for a wonderful home cooked dinner. Thank you Elizabeth for the video too! We appreciate your continued support of my family. We also want to thank the Ferris family for the wonderful brownies you delivered to us today! Junko and Tad, you continue to spoil us. Marisa, one of Mattie's helpers this summer, delivered a gift for Mattie tonight, but he hasn't opened it yet. But I appreciate having it on hand for one of our many upcoming difficult moments!
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I grieve to see the little boy in the pictures at the beginning of the blog versus the recent pictures of Mattie; as you said, the outside looks the same but the spirit is definitely waning. I can only imagine how hard it is for you and Peter right now to have to be within arms' reach of Mattie at all times; no matter how much we love our children, we need time and space to recoup our "balance" and you haven't had that at all this year. Lesley's email describes you as a woman warrior and that is so true. That is exactly what you have been this year; on the warpath to finding a solution to Mattie's cancer and now that the time is approaching, a warrior in defense of a pain free, peaceful passing. I realized we all tell you not to doubt or question yourself; that's impossible, but all of us who regularly read the blog know your decisions are sound, thoughtful and made from love tempered with acquired knowledge. So when you question, as you will, know that we appreciate what brought you to where you are. I will pray today for the best possible news from the scan. I leave you in the arms of the world creator with prayers that he will hold Mattie and you gently."
No comments:
Post a Comment