Click Here to read the article from today's Daily News about Brady and the Festival of Hope
Two more days with Brady's tubies! I have to admit I was a little sentimental tonight as I flushed Brady's Broviac. The two of us have had quite a bit of alone time while taking care of that thing, and some laughs too! Brady can completely tell me the whole process of what to do and now is even starting to do a lot of it! I'm certainly not going to miss having to pull that dressing off once a week while he screams and having to bathe him in 2 inches of water in the sink. We are wondering if the three amigos will even all still fit in our bathtub! We'll see! I call tomorrow for Friday's surgery time.
I'm really behind on planning my words for my speech Friday night. I could talk for hours about Brady's story. I have to find a focus for what I want to talk about. My pain priority is convey a message of hope through Brady's story. It is difficult to know that there will be many there who have lost a loved one to cancer. Please pray that God will use me to inspire hope in those who are there.
Showing posts with label Daily News. Show all posts
Showing posts with label Daily News. Show all posts
Wednesday, June 3, 2009
Tuesday, June 2, 2009
Surprise Call from Dr. L
I realized this morning that I never posted this last night! Oops!
The exciting news first! At about 5:30 tonight I answered the phone and I hear, "Mrs. Williams? This is Sloan Kettering calling, Dr. L will be speaking with you in 20-30 seconds." And sure enough, there he was. He was calling to tell me that he reviewed Brady's scans when they arrived last week, and that the tumor board reviewed his case again today. Here is a summary of their meeting:
1. There is a small amount of tumor still left in the foramina (spinal column area). Having another laminectomy (surgery) is the only option to remove it. However this is very invasive. The tumor board feels that given Brady's intermediate risk status, that it is more reasonable to leave this piece of tumor in there.
2. They estimate that somewhere between 95-99% of the tumor was removed! Hallelujah:)
3. The area where the big tumor was in his chest "looks good."
4. The tumor board recommends rescanning him in 6 months. This differs from the 3 month timetable we were originally told. Matt and I have to really think about this one. Dr. L does not want us to continue doing CT scans. He discussed with me the risks of repeat radiation due to CT scans, something we haven't considered until this point because the scans were necessary. He thinks that MRI scans of the chest should give a good look at the chest and spine area. If something shows up, then a CT can be done.
5. Dr. L kind of "encouraged" me to bring Brady to Sloan for the scans every 6 months. I think Matt and I are seriously considering it. There are many reasons to consider it. Sloan doesn't use intubation during an MRI, Strong does. The radiologists at Sloan see WAY more NB cases than Strong, so the scans will be read by people much more familiar with this disease. The flip side, of course, is that by scanning in NYC we will again be fracturing ourselves from our doctor here at Strong. I think we will continue to have that sense that no one is in charge. A lot to think about.
Tonight we celebrate this wonderful news. Tonight we look ahead to Friday's surgery. I can feel God's amazing grace pulling the storm clouds away from our family. I know this road is so long, certainly there will be times of trial ahead. But I'm so happy that God gives me days like today when it is just impossible not to shout praises to Him for all He has done!!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
We had a great time today with the reporter and photographer from the Daily News. Hopefully the story (and picture) will run Thursday. The photographer loved the Williams kids! I really think Allie stole his heart :)
The exciting news first! At about 5:30 tonight I answered the phone and I hear, "Mrs. Williams? This is Sloan Kettering calling, Dr. L will be speaking with you in 20-30 seconds." And sure enough, there he was. He was calling to tell me that he reviewed Brady's scans when they arrived last week, and that the tumor board reviewed his case again today. Here is a summary of their meeting:
1. There is a small amount of tumor still left in the foramina (spinal column area). Having another laminectomy (surgery) is the only option to remove it. However this is very invasive. The tumor board feels that given Brady's intermediate risk status, that it is more reasonable to leave this piece of tumor in there.
2. They estimate that somewhere between 95-99% of the tumor was removed! Hallelujah:)
3. The area where the big tumor was in his chest "looks good."
4. The tumor board recommends rescanning him in 6 months. This differs from the 3 month timetable we were originally told. Matt and I have to really think about this one. Dr. L does not want us to continue doing CT scans. He discussed with me the risks of repeat radiation due to CT scans, something we haven't considered until this point because the scans were necessary. He thinks that MRI scans of the chest should give a good look at the chest and spine area. If something shows up, then a CT can be done.
5. Dr. L kind of "encouraged" me to bring Brady to Sloan for the scans every 6 months. I think Matt and I are seriously considering it. There are many reasons to consider it. Sloan doesn't use intubation during an MRI, Strong does. The radiologists at Sloan see WAY more NB cases than Strong, so the scans will be read by people much more familiar with this disease. The flip side, of course, is that by scanning in NYC we will again be fracturing ourselves from our doctor here at Strong. I think we will continue to have that sense that no one is in charge. A lot to think about.
Tonight we celebrate this wonderful news. Tonight we look ahead to Friday's surgery. I can feel God's amazing grace pulling the storm clouds away from our family. I know this road is so long, certainly there will be times of trial ahead. But I'm so happy that God gives me days like today when it is just impossible not to shout praises to Him for all He has done!!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
We had a great time today with the reporter and photographer from the Daily News. Hopefully the story (and picture) will run Thursday. The photographer loved the Williams kids! I really think Allie stole his heart :)
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