Holy humidity! I've added low humidity to my wish list for Saturday:)
Today was one of those days when you accomplish a ton of loose ends! The kids and I hung out all morning, then after lunch I headed out to a hair appointment. I'm so glad to not be looking like a swamp creature anymore! Then I hit 5 stores to grab some party items...so exciting!
Tonight I wrote a letter and sent scans to Dr. Laquaglia at Sloan. We want him to review Brady's recent scans and offer his impressions. I'm not sure how long he will be willing to do this, but until I hear otherwise, off they go! I also wrote a letter to my insurance company thanking them for our wonderful Case Manager. We have officially graduated from the Case Management program (which is good news!) so we will no longer need Priscilla's services. You know how you always say, "I'm going to write a letter" when either good/bad things happen? Well, tonight I decided to thank her for her wonderful service by doing just that! If you are reading Priscilla, thanks a million:) I signed my letter, Megan Williams, mom to Brady, cancer warrior and survivor! That is the first time I referred to him as a survivor, it has a nice ring to it:)
My sister and family arrived safely at my mom's from Minnesota. We are really looking forward to a week of fun with all of them. A big HAPPY BIRTHDAY TO MY SISTER MELISSA!
Showing posts with label Dr Laquaglia. Show all posts
Showing posts with label Dr Laquaglia. Show all posts
Monday, August 10, 2009
Tuesday, May 19, 2009
Time to Digest Things
Another busy day today! Brady and I went to his first official PT appointment in Rochester. Wasn't the PT shocked to see Brady walking down the hall to the room. We were there about 2 1/2 weeks ago for his evaluation at which time Brady was only starting to walk on carpet. He didn't walk at all during that appointment. Her mouth just hung open as he proudly walked down the hall and started exploring all the toys in the room. He has a great rapport with PT Linda. He played with her easily, let her touch him, and was easy going and silly throughout the 30 minute session. Hooray for Brady!
Okay, so after 24 hours to digest yesterday's appointment with the oncologist, our conclusion is that we are not satisfied. A fellow NB mom, one whose precious son is no longer here on this earth, emailed me after reading my post yesterday. She gently reminded me that being okay with sitting back and waiting may not be the best idea. She reminded me that NB is a sneaky and unpredictable disease. Her son had a vague area on a scan that they were told was nothing to worry about and 3 months later it had grown to be bigger than the original tumor. These are not stories meant to scare you or me, this is a reality, this is Neuroblastoma. I read about precious children who are dying everyday, children who have achieved cancer-free status only to have this terrible beast return.
Matt and I have had a chance to regroup and to talk about things. We throroughly read the radiology reports which are complicated at best. There are several sections of the report that raise questions for us. Some of what they noted on the scans just doesn't mesh with what we were told happened during surgery. For example, Dr. L told us that he only removed a piece of Brady's 4th rib, however the scan reports note some sort of involvement in the 5th and 6th ribs. This is our Brady, we cannot just sit back and trust that everything was gone over completely and that things are okay. Our plan is to send the scans (we have a copy) and the radiology reports to Dr. L at Sloan for his review and to request that their radiologist review them. This sounds easy, but if you have been following this story for a while, you know that this will take some work!
Please be praying for us. I find myself enxhausted these days and I know Matt is too! The incredible responsibility of staying on top of Brady's care is quite a job and it is taking a toll. When I start to feel like I can't go on, I think of all of the families who no longer can fight the fight, or those who have been fighting it for years. As you remember us in your prayers, please pray that all families affected by this disease will be strengthened and encouraged today.
Okay, so after 24 hours to digest yesterday's appointment with the oncologist, our conclusion is that we are not satisfied. A fellow NB mom, one whose precious son is no longer here on this earth, emailed me after reading my post yesterday. She gently reminded me that being okay with sitting back and waiting may not be the best idea. She reminded me that NB is a sneaky and unpredictable disease. Her son had a vague area on a scan that they were told was nothing to worry about and 3 months later it had grown to be bigger than the original tumor. These are not stories meant to scare you or me, this is a reality, this is Neuroblastoma. I read about precious children who are dying everyday, children who have achieved cancer-free status only to have this terrible beast return.
Matt and I have had a chance to regroup and to talk about things. We throroughly read the radiology reports which are complicated at best. There are several sections of the report that raise questions for us. Some of what they noted on the scans just doesn't mesh with what we were told happened during surgery. For example, Dr. L told us that he only removed a piece of Brady's 4th rib, however the scan reports note some sort of involvement in the 5th and 6th ribs. This is our Brady, we cannot just sit back and trust that everything was gone over completely and that things are okay. Our plan is to send the scans (we have a copy) and the radiology reports to Dr. L at Sloan for his review and to request that their radiologist review them. This sounds easy, but if you have been following this story for a while, you know that this will take some work!
Please be praying for us. I find myself enxhausted these days and I know Matt is too! The incredible responsibility of staying on top of Brady's care is quite a job and it is taking a toll. When I start to feel like I can't go on, I think of all of the families who no longer can fight the fight, or those who have been fighting it for years. As you remember us in your prayers, please pray that all families affected by this disease will be strengthened and encouraged today.
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