Tears of relief have replaced tears of anguish tonight after many long days of waiting. We finally have some news. Very good news. The biopsy shows no cancer cells. The pathologist was pushed to look more closely when no initial cells were found and still found no trace of cancer. The neurosurgeon is confident in his sample. The sample is negative for fungus and they have already ruled out infection. So, what is it? Nobody knows. But we will take an "I don't know" over "cancer" any day.
Our oncologist is truly amazed. (She said so several times in our conversation.) She was sure they would find cancer and was feeling like she had almost made a mistake in ordering the biopsy because we lost precious treatment time.
Personally, I give credit to Brent for pushing for the biopsy. All along he just kept saying there had to be another explanation. While I was hopeful, I wasn't as confident. How grateful we are for divine guidance in wanting to be sure before pushing ahead with treatment. We both felt that despite what two separate boards of experts were telling us, we just had to know for sure.
Of course we feel an immense amount of relief but with a bit of reservation. The tumor board will continue to watch this closely over the next few months. An MRI is scheduled for 8 weeks. But for now, we are following Keith's lead and living in the moment. This is the best moment we've felt in a long time and it is filled with happiness and gratitude of the deepest kind.
I wish this was more eloquent and I could elaborate more, but we are celebrating tonight and I must get back to the party.
***Keith, by the way, is home and recovering. He's been feeling pretty crummy this week but perked up significantly today. We can't stop squeezing him and just thinking about all the time we still get to spend with him. I know I'm biased but he truly is one amazing little soul with clearly more to do here on this earth. I'm humbled to know him, much less be his mom.
Friday, July 6, 2012
Monday, July 2, 2012
Choosing Hope
The last month has been one crazy ride of emotions for our family. Currently, we are in the Pediatric Intensive Care Unit at Doernbecher Children's Hospital while Keith recovers from a brain biopsy performed earlier today. I've avoided blogging about everything because I'm either in denial or hopeful that what we've been told for the last month is not true. I choose to call it hope rather than denial because it just sounds better, doesn't it? My Dad told me weeks ago that hope can be a very powerful thing. My inner mantra since that conversation has been, "I choose hope. I choose hope. I choose hope."
Ever since Keith's hospital stay for his seizures, we were told that there were some abnormal findings on his MRI. Abnormal as in, recurrent disease. As in, his cancer is back.
For Keith's type of cancer, this is devastating news. There is no treatment path for a cure for a medulloblastoma relapse. The survival statistics are grim. Brent and I just couldn't believe what they were telling us. They performed another MRI one week later to see if the seizures were causing some of the abnormalities, but again we were told the abnormalities were still there and had actually gotten worse in one week and now they were seeing some spots in his spine. (He has had two spinal taps since then which both came back negative. Good news.)
After the second MRI this month, we had the most heart-breaking conversation of our lives with our oncologist. She basically reviewed some studies that we could consider for treatment that could give Keith at best, some quality-of-life time left, but little else as far as a cure. She also said she would respect our decision to do nothing and just enjoy what time we had left which would be measured in months, not years. She cried with us.
Obviously, this news was shocking. We felt blindsided. Keith has progressed all month with his appetite, his mobility and his energy. Clinically, he is showing basically no signs of recurrent cancer. It just didn't make sense. So, we decided to get a second opinion and again, the tumor board told us that what they are seeing is most likely a relapse. We begged them to consider any other options as to what they might be seeing and they agreed to a biopsy before we considered any treatment options. Since then, we have officially switched Keith's cancer care to Doernbecher which we feel is the best decision for him right now. We have been very happy with the treatment he received over the last 16 months but recognize that this is a new phase, a phase where we need to be connected with the best and newest treatment options around the country and feel good about the decision to move. It has been hardest on me. I made friends with every single one of Keith's nurses. The nurses in the Clinic, in Day Treatment and on the Floor. I know about their kids and their hobbies. We've laughed and we've cried together. In addition, I just miss feeling comfortable and knowing where everything is! Being in a new place has me all turned around but again, we feel it is the best decision. Keith's new oncologist is a Harvard-trained, Brain-tumor specialist and she's awesome. If I were 100 times smarter, I think she might consider being my friend.
I've been nervous to go public with this information because I feel like if I do, I'm admitting that Keith could really be experiencing a relapse and we feel so hopeful that it's not true so why make a big deal out of something that could be nothing, right? But the fact of the matter is that two separate brain tumor boards have come to the same conclusion and there was enough material to easily biopsy. So something is in there that shouldn't be, we are just hoping and praying it can be explained by something else. Anything else besides cancer. So, call us crazy, but we are still hopeful. (He also has a decent size incision running vertically in front of his right ear, which would be difficult to explain to people, so I figured I better just explain everything.)
The pathology results from the biopsy should be back by Thursday or Friday and I promise to update when we know something. After spending the entire month in inner turmoil, we can hardly stand the wait to get accurate information about what we are dealing with.
Either way, I can honestly say that we feel peaceful tonight. The hard part for us has been deciphering whether we feel peaceful because we are going to get what we want and the biopsy will be negative or if we feel peaceful because we are about to be supported and strengthened through difficult months ahead. Even more difficult than any we've already experienced. 5 weeks ago we thought we had put all this behind us. Again, we are learning how quickly our lives can change.
Along with change, we have also seen miracles happen in Keith's treatment so far and we know there is no limit to the miracles the Lord can perform in our lives. We also recognize that sometimes the miracle is receiving our deepest desires, and other times the miracle is the ability to endure the unimaginable and accept the Lord's will which might be different from our own.
This is Keith prior to surgery this morning. He was so happy and sweet, as usual. Even though we woke him up to take him to the hospital, he never asked questions or complained. He played happily in the waiting room even though we ended up waiting for 3 hours. He was very hungry and thirsty and it was so hard to deny him food when we've been encouraging it so much lately! He is a Superhero in every sense. Tonight he even said, "Thank you" to the nurse when she removed his catheter. What 4 year old says that?!
We took a special trip to Great Wolf Lodge with some of Brent's siblings and their families and his parents. Keith has been begging to go back ever since last year but because of his immune system we really couldn't go. When we got the bad news a few weeks ago, we needed to get away with some of our favorite people and we knew where we were headed. I wanted to capture every moment so I took lots of pictures and had a hard time not including most of them.
We had a few other happenings this month that I will attempt to catch up on this week. One thing I cannot skip is Brent and I celebrating our 11th wedding anniversary. It was just a quick dinner, but a night out is very hard to come by these days. We savored every second and got a chance to actually converse uninterrupted. I felt grateful to be reminded how much we enjoy being together even when conversation is a little heavy for our taste. Somehow, we've managed to keep our sense of humor which has been a lifesaver for us both.
Ever since Keith's hospital stay for his seizures, we were told that there were some abnormal findings on his MRI. Abnormal as in, recurrent disease. As in, his cancer is back.
For Keith's type of cancer, this is devastating news. There is no treatment path for a cure for a medulloblastoma relapse. The survival statistics are grim. Brent and I just couldn't believe what they were telling us. They performed another MRI one week later to see if the seizures were causing some of the abnormalities, but again we were told the abnormalities were still there and had actually gotten worse in one week and now they were seeing some spots in his spine. (He has had two spinal taps since then which both came back negative. Good news.)
After the second MRI this month, we had the most heart-breaking conversation of our lives with our oncologist. She basically reviewed some studies that we could consider for treatment that could give Keith at best, some quality-of-life time left, but little else as far as a cure. She also said she would respect our decision to do nothing and just enjoy what time we had left which would be measured in months, not years. She cried with us.
Obviously, this news was shocking. We felt blindsided. Keith has progressed all month with his appetite, his mobility and his energy. Clinically, he is showing basically no signs of recurrent cancer. It just didn't make sense. So, we decided to get a second opinion and again, the tumor board told us that what they are seeing is most likely a relapse. We begged them to consider any other options as to what they might be seeing and they agreed to a biopsy before we considered any treatment options. Since then, we have officially switched Keith's cancer care to Doernbecher which we feel is the best decision for him right now. We have been very happy with the treatment he received over the last 16 months but recognize that this is a new phase, a phase where we need to be connected with the best and newest treatment options around the country and feel good about the decision to move. It has been hardest on me. I made friends with every single one of Keith's nurses. The nurses in the Clinic, in Day Treatment and on the Floor. I know about their kids and their hobbies. We've laughed and we've cried together. In addition, I just miss feeling comfortable and knowing where everything is! Being in a new place has me all turned around but again, we feel it is the best decision. Keith's new oncologist is a Harvard-trained, Brain-tumor specialist and she's awesome. If I were 100 times smarter, I think she might consider being my friend.
I've been nervous to go public with this information because I feel like if I do, I'm admitting that Keith could really be experiencing a relapse and we feel so hopeful that it's not true so why make a big deal out of something that could be nothing, right? But the fact of the matter is that two separate brain tumor boards have come to the same conclusion and there was enough material to easily biopsy. So something is in there that shouldn't be, we are just hoping and praying it can be explained by something else. Anything else besides cancer. So, call us crazy, but we are still hopeful. (He also has a decent size incision running vertically in front of his right ear, which would be difficult to explain to people, so I figured I better just explain everything.)
The pathology results from the biopsy should be back by Thursday or Friday and I promise to update when we know something. After spending the entire month in inner turmoil, we can hardly stand the wait to get accurate information about what we are dealing with.
Either way, I can honestly say that we feel peaceful tonight. The hard part for us has been deciphering whether we feel peaceful because we are going to get what we want and the biopsy will be negative or if we feel peaceful because we are about to be supported and strengthened through difficult months ahead. Even more difficult than any we've already experienced. 5 weeks ago we thought we had put all this behind us. Again, we are learning how quickly our lives can change.
Along with change, we have also seen miracles happen in Keith's treatment so far and we know there is no limit to the miracles the Lord can perform in our lives. We also recognize that sometimes the miracle is receiving our deepest desires, and other times the miracle is the ability to endure the unimaginable and accept the Lord's will which might be different from our own.
We took a special trip to Great Wolf Lodge with some of Brent's siblings and their families and his parents. Keith has been begging to go back ever since last year but because of his immune system we really couldn't go. When we got the bad news a few weeks ago, we needed to get away with some of our favorite people and we knew where we were headed. I wanted to capture every moment so I took lots of pictures and had a hard time not including most of them.
  |
| Cousin Jade in the arcade. |
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| Julie, Hunter, Jade, Brent and Keith enjoying some arcade time. |
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| Jade loving the slide. She was one brave little lady even on the big slides! |
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| Caden and Clint |
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| Cohen trying to soak his cousins. |
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| Grandma and Keith. |
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| Jade being silly. |
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| Aunt Annie and Fisher loving the water. |
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| Caden squirting anyone he can! |
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| Caden waving hello. |
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| Grandma hanging out with Keith, Ally and Fisher. |
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| Ally getting in some good soaks. |
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| Enjoying some family time in our "cabin". |
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| Grandpa taking Cole and Ally to dinner. |
We had a few other happenings this month that I will attempt to catch up on this week. One thing I cannot skip is Brent and I celebrating our 11th wedding anniversary. It was just a quick dinner, but a night out is very hard to come by these days. We savored every second and got a chance to actually converse uninterrupted. I felt grateful to be reminded how much we enjoy being together even when conversation is a little heavy for our taste. Somehow, we've managed to keep our sense of humor which has been a lifesaver for us both.
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