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Our little Isaac William Dose (19 months) was diagnosed with a tumor on his brain stem and spinal cord on Tuesday, April 7th. This news was the worst we have heard in our entire life and as parents it completely rocked our world. All sorts of thoughts and emotions were rushing through us and we could barely think in our car as we were crying uncontrollably after our pediatrician delivered the shocking MRI results regarding Isaac. Through the tears we managed to tell each other, “God is good and HE CAN and WILL use this and us for good”.
The next day we traveled to the University of Iowa to meet with a neurosurgeon and radiologist to discuss how we could treat Isaac. Our first meeting was with the neurosurgeon and just when we thought things could not get any worse, it felt like they plummeted into the ground. The neurosurgeon said things like “He may be on a ventilator for the rest of his life” “Paralysis from the neck down is a possibility” “He may lose vision”. Lastly, the surgeon said he has only seen this type of tumor two times in his life and has NEVER operated on it. The only silver lining in this meeting was that typically a tumor in this location he said is usually inoperable and in Isaac’s case he felt like he could operate on him to remove as much of the tumor as possible. That meeting felt as good as a truck hitting us…geez. At this point we started thinking that we may need a second opinion from another hospital.
Our second meeting was with radiology. While the first meeting knocked us down, this meeting picked us up and we grabbed some hope to take home with us. The radiologists did a great job explaining how the procedure would work much better and told us that their main priority during the surgery would be to get as much of the tumor out as possible without risking damage to Isaac’s brain stem. Their main recommendation was to have the surgery and then go from there. We knew at that point we needed the best neurosurgeon to operate on Isaac. At this point Allison and her mom stepped in and asked respectfully “If this was your son where would you take him?” While they did not directly answer it, they did talk about a few reputable hospitals, one of them being Boston Children’s Hospital. Allison then said we would like to get a second opinion and we were asked, “Where we would like it from?” Allison spouted out “Boston!....Wait, Nick is that ok?” From what we had heard and researched Boston was the #1 hospital for children’s neurology surgery and so of course, I agreed with her…we are fighting for our son and we were soliciting the help of the dream team so to speak. Boston it is.
The next day (Thursday) not much happened. Iowa was working to overnight Isaac’s MRI results and send his medical information to the appropriate team in Boston. That day we were blessed to have many calls, texts and time spent from our friends and family. You all are simply amazing…every single one of you.
Friday we got a call from Boston telling us that they had received all of our medical information and they have assigned a doctor to Isaac’s case. Dr. Liliana Goumnerova, Director for Pediatric Neurosurgical Oncology. They told us she was going to call us at some point of the day to discuss what Boston could do for our little IZ. Allison and I tethered our expectations just above ground level. We expected to hear slightly better information compared to Iowa at best. The doctor called middle of the afternoon and Allison rushed into our home office and I followed after handing off Isaac to grandma. The doctor was smart, relatable, confident and well spoken. Here was the skinny. The doctor was optimistic that she could operate on Isaac with a low risk of affecting his long term health. Her plan is to remove a portion of the tumor and then complete a round of chemotherapy. We asked her if she thought Isaac will live a normal life and her thought was that Isaac has a strong chance of living a normal life but will need continual follow up during his life to ensure the tumor does not “act up” again. WOW. We were blown away. Joy overwhelmed us and we could not stop the tears as we were hugging saying “we have a chance, we have a chance”. Despite this hope, this is still brain surgery on a 19 month old and the slightest complication will have serious long term consequences.
We will know more information soon, but it is looking like we will travel to Boston late this week and Isaac’s tentative surgery date is April 21st.
We would never wish this situation upon anyone and this time has been physically and emotionally draining for us and our family. That being said, we have seen God all over this circumstance. From the amount of prayers flooding in around the world, to clarity on finding the best neurosurgeon and children’s hospital, to staying positive in a grim circumstance we know GOD IS IN CONTROL! We ask that each of you please come along side us in Isaac’s journey and read his updates and keep praying for our little man. He has been an amazing blessing and inspiration to us and we hope that his life will have some sort of effect on you. We love you and are thankful to anyone who reads this because we know they are thinking about Isaac.
With love,
Nick, Allison and Isaac Dose
Our little Isaac William Dose (19 months) was diagnosed with a tumor on his brain stem and spinal cord on Tuesday, April 7th. This news was the worst we have heard in our entire life and as parents it completely rocked our world. All sorts of thoughts and emotions were rushing through us and we could barely think in our car as we were crying uncontrollably after our pediatrician delivered the shocking MRI results regarding Isaac. Through the tears we managed to tell each other, “God is good and HE CAN and WILL use this and us for good”.
The next day we traveled to the University of Iowa to meet with a neurosurgeon and radiologist to discuss how we could treat Isaac. Our first meeting was with the neurosurgeon and just when we thought things could not get any worse, it felt like they plummeted into the ground. The neurosurgeon said things like “He may be on a ventilator for the rest of his life” “Paralysis from the neck down is a possibility” “He may lose vision”. Lastly, the surgeon said he has only seen this type of tumor two times in his life and has NEVER operated on it. The only silver lining in this meeting was that typically a tumor in this location he said is usually inoperable and in Isaac’s case he felt like he could operate on him to remove as much of the tumor as possible. That meeting felt as good as a truck hitting us…geez. At this point we started thinking that we may need a second opinion from another hospital.
Our second meeting was with radiology. While the first meeting knocked us down, this meeting picked us up and we grabbed some hope to take home with us. The radiologists did a great job explaining how the procedure would work much better and told us that their main priority during the surgery would be to get as much of the tumor out as possible without risking damage to Isaac’s brain stem. Their main recommendation was to have the surgery and then go from there. We knew at that point we needed the best neurosurgeon to operate on Isaac. At this point Allison and her mom stepped in and asked respectfully “If this was your son where would you take him?” While they did not directly answer it, they did talk about a few reputable hospitals, one of them being Boston Children’s Hospital. Allison then said we would like to get a second opinion and we were asked, “Where we would like it from?” Allison spouted out “Boston!....Wait, Nick is that ok?” From what we had heard and researched Boston was the #1 hospital for children’s neurology surgery and so of course, I agreed with her…we are fighting for our son and we were soliciting the help of the dream team so to speak. Boston it is.
The next day (Thursday) not much happened. Iowa was working to overnight Isaac’s MRI results and send his medical information to the appropriate team in Boston. That day we were blessed to have many calls, texts and time spent from our friends and family. You all are simply amazing…every single one of you.
Friday we got a call from Boston telling us that they had received all of our medical information and they have assigned a doctor to Isaac’s case. Dr. Liliana Goumnerova, Director for Pediatric Neurosurgical Oncology. They told us she was going to call us at some point of the day to discuss what Boston could do for our little IZ. Allison and I tethered our expectations just above ground level. We expected to hear slightly better information compared to Iowa at best. The doctor called middle of the afternoon and Allison rushed into our home office and I followed after handing off Isaac to grandma. The doctor was smart, relatable, confident and well spoken. Here was the skinny. The doctor was optimistic that she could operate on Isaac with a low risk of affecting his long term health. Her plan is to remove a portion of the tumor and then complete a round of chemotherapy. We asked her if she thought Isaac will live a normal life and her thought was that Isaac has a strong chance of living a normal life but will need continual follow up during his life to ensure the tumor does not “act up” again. WOW. We were blown away. Joy overwhelmed us and we could not stop the tears as we were hugging saying “we have a chance, we have a chance”. Despite this hope, this is still brain surgery on a 19 month old and the slightest complication will have serious long term consequences.
We will know more information soon, but it is looking like we will travel to Boston late this week and Isaac’s tentative surgery date is April 21st.
We would never wish this situation upon anyone and this time has been physically and emotionally draining for us and our family. That being said, we have seen God all over this circumstance. From the amount of prayers flooding in around the world, to clarity on finding the best neurosurgeon and children’s hospital, to staying positive in a grim circumstance we know GOD IS IN CONTROL! We ask that each of you please come along side us in Isaac’s journey and read his updates and keep praying for our little man. He has been an amazing blessing and inspiration to us and we hope that his life will have some sort of effect on you. We love you and are thankful to anyone who reads this because we know they are thinking about Isaac.
With love,
Nick, Allison and Isaac Dose
Organizer and beneficiary
Jeremy Tatman
Organizer
Bettendorf, IA
Nickolas Dose
Beneficiary