We are spending the days enjoying being with the boys and soaking in the funny things that they do and say. We are observing the new behaviors - both the heartwarming and teeth clinching behaviors - and are able to laugh and smile at the fact that they are all signs of healthy and developmental appropriate children. We are happy to be able to find and focus on the amazement of how quickly they grow, learn, and mature. Their innocent perspectives, curious questions, and unfiltered responses keep us laughing.
Robert is feeling well physically and emotionally. We are content in the moment and of course we continue to wish for continued contentment. Robert and I are taking a trip from Thur. to Tue. to Rhode Island. We are looking forward to the time to relax and be together. The boys are excited to 'vacation' without us and we are thankful that they are so comfortable to stay without us. Although it is sometimes difficult to plan to be away from the boys - both emotionally and logistically - we recognize that we all need time to regroup, reconnect, and refresh ourselves. We are thankful for everyone who helps us to function each and every day. We are not working alone here and we are thankful for the support.
Wednesday, July 30, 2008
Monday, July 21, 2008
July 21st
Your prayers and positive thoughts are working. We meet with our oncologist today and we got an excellent report. She is beginning to realize what most of us already know- Robert is a superhero. I wish that I could articulate to you what the doctor explained to us, but the emotions and my lack of medical knowledge make it impossible to repeat the amount of detailed information that she shared with us. Suffice it to say- she explained that all pictures on the MRI scans showed improvement. She told us that she would have been happy if the scans had remained the same and yet she saw improvement across all scans. She stated that this is rare and so she was very pleased. We are grateful for this report and grateful for all of the people who share in our happiness. Thank you for giving your time to reach out to us through your thoughts, prayers, and good wishes. We take this positive report and the joy that comes with it to sleep with us tonight as we dream of future happiness together. Sweet Dreams!
Friday, July 11, 2008
July 11th
I know that I just posted two days ago and it was long winded- but- I had to post again tonight for two reasons. First- I have so many thoughts scrambling in my head and writing often helps me to organize and clarify them for myself. Secondly- I often have this sense of stress come over me when certain incidences happen, because it reminds me of the amazing support that have surrounding us. The support is not the stressful part- that is indeed the most wonderful gift. The stress is the fact that we can never seem to truly reach out to and express our gratitude quickly and articulately enough to impress upon others the positive impact that they have had on our lives.
OK- Here I go. I will try to remain brief. Tonight we watched episode 1 & 3 of the new TV series- Hopkins. Robert found it interesting from a scientific perspective and was able to watch it with little emotional impact. I viewed it more from an emotional perspective and found it difficult to watch, at least initially. Maybe because it brought back the raw emotion of our experiences at Hopkins, maybe because we got the 'undesirable' diagnosis while we watched others get a 'positive' diagnosis, or maybe because it was a reminder that we are still fighting. As my intelligent husband reminded me- he is doing well. He feels good and definitely looks good too.
One thing was and is always clear- We will be forever grateful to so many and will be spending time trying to share our feelings. Tonight, as we watched the show, we were reminded of the dedicated doctors, nurses, social workers, and staff who dedicate themselves to their jobs. We feel fortunate to be working with the 'best' of the 'best'. They make sacrifices every day to help families like us. They have taken care of Robert and me as well. I ponder how it is possible to thank someone for tirelessly taking care of others physically & emotionally (before/during/after diagnosis) and continuing to research to keep improving treatments. They are the most disciplined and selfless people and we are thankful that they are intelligent enough, empathetic enough, and dedicated enough to do such good in the world. I hope that a 'thank you' can never come to late as we now feel that we are at a point in time when we can try and express our sentiments.
A neurosurgeon said it well on the show tonight- He commented that he believes those patients who have a large support network do better then those that do not. So if I haven't articulated it well enough- let me say it like this- THANK YOU! Robert will go for his next MRI scan on Wed. 7/16. We will meet with the doctor to review the results on Mon 7/21. Since I have gotten better at asking- I will ask for your prayers and good wishes for a good report.
OK- Here I go. I will try to remain brief. Tonight we watched episode 1 & 3 of the new TV series- Hopkins. Robert found it interesting from a scientific perspective and was able to watch it with little emotional impact. I viewed it more from an emotional perspective and found it difficult to watch, at least initially. Maybe because it brought back the raw emotion of our experiences at Hopkins, maybe because we got the 'undesirable' diagnosis while we watched others get a 'positive' diagnosis, or maybe because it was a reminder that we are still fighting. As my intelligent husband reminded me- he is doing well. He feels good and definitely looks good too.
One thing was and is always clear- We will be forever grateful to so many and will be spending time trying to share our feelings. Tonight, as we watched the show, we were reminded of the dedicated doctors, nurses, social workers, and staff who dedicate themselves to their jobs. We feel fortunate to be working with the 'best' of the 'best'. They make sacrifices every day to help families like us. They have taken care of Robert and me as well. I ponder how it is possible to thank someone for tirelessly taking care of others physically & emotionally (before/during/after diagnosis) and continuing to research to keep improving treatments. They are the most disciplined and selfless people and we are thankful that they are intelligent enough, empathetic enough, and dedicated enough to do such good in the world. I hope that a 'thank you' can never come to late as we now feel that we are at a point in time when we can try and express our sentiments.
A neurosurgeon said it well on the show tonight- He commented that he believes those patients who have a large support network do better then those that do not. So if I haven't articulated it well enough- let me say it like this- THANK YOU! Robert will go for his next MRI scan on Wed. 7/16. We will meet with the doctor to review the results on Mon 7/21. Since I have gotten better at asking- I will ask for your prayers and good wishes for a good report.
Wednesday, July 9, 2008
July 9th
We are back from GA and really enjoyed our time with everyone. It felt good to get away, spend time with family, and to do what was so typical and normal before we embarked on the medical journey that we have been facing. We were able to appreciate the fact that we were able to go. We were able to appreciate the fact that we were doing what had become routine - before the diagnosis. We were relaxing and spending time with each other without feeling the constant pressures of life.
The flight was a unique experience for each of us. Bryce was fearful and adamant that he was not getting on the plane. Trey was excited and truly viewing it with amazement. Robert and I were anxious to get everyone on the plane and keep them occupied and content. In the end- all went extremely well and it was an enjoyable experience for everyone. Let's just say- the flight attendant saw that Bryce was upset and sent the boys and I directly to the cockpit. The boys got to sit in the pilots and co-pilot's seats and were given extra special attention that put them at ease and had us all very excited. Once I realized that I did not have the camera - Robert did - The pilot got on the microphone and said, "Robert Kinberg please bring the camera to the cockpit." Imagine this- Robert has two car seats on the plane, some carry on bags, and has to move against the traffic of passengers still boarding to get to us in the cockpit. He did it and I have pictures that capture the excitement in the cockpit. These are the memories that we will treasure always.
I will draw upon this experience often as it is in some way an analogy for life. There are things that we are all fearful of and yet we can overcome them. Bryce trusted in us to be there for him (affirm his fear), to teach him (Robert talked him through what was happening), and protect him - and was able to enjoy the flight and even look forward to doing it again. Sometimes the inexperience and the fear of the unknown can be overwhelming and fearful. However, having people around us - to affirm that our feelings and fears are valid, to guide us, and to support us allows us to get through the dark and scary times knowing that we will be more experienced and stronger because of it. The willingness of strangers to reach out and help confirms that we need to extend ourselves/accept help and learn from others. The flight attendant and pilots taking time out to help the boys is equivalent to the number of strangers that have reached out to us and have given us reason to smile. And even if flying is not our favorite thing to do or our first choice of transportation - doing it and understanding that the experience opens us up to seeing the big beautiful world and the many places and cultures that we would not have seen if we had not overcome the fear - is worth it and is the power that keeps us flying again. This diagnosis is not what we would have chosen - but we must believe that this experience and all of the emotions that are encompassed in it- will open our hearts and eyes to feel and see things in ways that are unique and powerful. I believe that if we do not give in to the stress of the immediate situation and keep our eyes on the big picture, we will be stronger and better for it. Once the boys were relaxed and in the air, I had a huge sense of relief for them and told them that the world is now theirs and they can explore it.
The flight was a unique experience for each of us. Bryce was fearful and adamant that he was not getting on the plane. Trey was excited and truly viewing it with amazement. Robert and I were anxious to get everyone on the plane and keep them occupied and content. In the end- all went extremely well and it was an enjoyable experience for everyone. Let's just say- the flight attendant saw that Bryce was upset and sent the boys and I directly to the cockpit. The boys got to sit in the pilots and co-pilot's seats and were given extra special attention that put them at ease and had us all very excited. Once I realized that I did not have the camera - Robert did - The pilot got on the microphone and said, "Robert Kinberg please bring the camera to the cockpit." Imagine this- Robert has two car seats on the plane, some carry on bags, and has to move against the traffic of passengers still boarding to get to us in the cockpit. He did it and I have pictures that capture the excitement in the cockpit. These are the memories that we will treasure always.
I will draw upon this experience often as it is in some way an analogy for life. There are things that we are all fearful of and yet we can overcome them. Bryce trusted in us to be there for him (affirm his fear), to teach him (Robert talked him through what was happening), and protect him - and was able to enjoy the flight and even look forward to doing it again. Sometimes the inexperience and the fear of the unknown can be overwhelming and fearful. However, having people around us - to affirm that our feelings and fears are valid, to guide us, and to support us allows us to get through the dark and scary times knowing that we will be more experienced and stronger because of it. The willingness of strangers to reach out and help confirms that we need to extend ourselves/accept help and learn from others. The flight attendant and pilots taking time out to help the boys is equivalent to the number of strangers that have reached out to us and have given us reason to smile. And even if flying is not our favorite thing to do or our first choice of transportation - doing it and understanding that the experience opens us up to seeing the big beautiful world and the many places and cultures that we would not have seen if we had not overcome the fear - is worth it and is the power that keeps us flying again. This diagnosis is not what we would have chosen - but we must believe that this experience and all of the emotions that are encompassed in it- will open our hearts and eyes to feel and see things in ways that are unique and powerful. I believe that if we do not give in to the stress of the immediate situation and keep our eyes on the big picture, we will be stronger and better for it. Once the boys were relaxed and in the air, I had a huge sense of relief for them and told them that the world is now theirs and they can explore it.
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