I recently read a blog that really hit me. I am so grateful for my life. I'm grateful for my freedom, health, happiness and family. Please please PLEASE pray for this little boy.
Daniel, who is now 7 years old, was diagnosed with Medulloblastoma (brain cancer) on August 20, 2009. He was initially treated with surgery, radiation, & chemotherapy. At that time we were told that the prognosis was 70-80% cure rate with a planned treatment course of approx. one year.
Unfortunately, on June 30, 2010 we found out during a followup MRI that his cancer had returned during treatment. His prognosis has gone from a moderate risk to high risk... with expected cure rate of approx. 40%. The plan of action was changed and he underwent a new chemo regimen from July through December 2010.
September 21, 2010 Daniel received a follow up MRI scan that came back with significant improvement (almost undetectable) and the lumbar punture showed no visible signs of cancer cells. This made it that we were able to move forward with the new proposed plan. In December he received High Dose Chemotherapy with Bone Marrow Rescue (where Daniel will be his own bone marrow donor). This was followed by a repeat course of 15 doses of radiation. The Bone Marrow Rescue was followed by 100 days of radiation. All MRI's since have shown no cancer present.
Daniel's July 7, 2011 was supposed to be the final MRI before being on maintenance. It was supposed to be the MRI that said we were done with treatment after 2 years. However, the scan came back showing that the cancer had returned. It is aggressive and resistant. There are no more treatment options left. Daniel will have a few weeks to 1-2 months left with us.
Despite all of this Daniel is a fun-loving, caring, silly, and happy boy. He reminds us daily how precious each moment is.
As many of you know, Daniel had his routine MRI on Thursday. This scan was supposed to be our final scan prior to being on maintenance and finally being done with treatment after 2 years. Only moments after Daniel and I returned home from the MRI, I received a phone call from the BMT doctor. He told me that there was enhancement on the scan which was concerning and that he wanted to meet with us the next day on Friday instead of waiting till Monday. During that meeting Dave and I were told that the cancer has returned and that it is aggressive and resistant. We had the opportunity to meet with the radiologist and look extensively at Daniel's MRI scans both from the day before and the one done back in April that showed no signs of cancer. Unfortunately, the new MRI shows tumor diffusely scattered on the entire surface of his brain and spinal cord. In talking to the BMT doctor, we were told that there were no good treatment options that could cure his cancer. We later talked to his primary oncologist who reiterated this. We were told that we have weeks to possibly 1-2 months left with our sweet Daniel. This news completely floored us as Daniel is doing better than he has done in 2 years and has no symptoms yet. My heart aches and I think I have cried more than humanly possible in the last couple of days.
We can not imagine life without our silly snuggle monkey. We consider ourselves lucky that we found this out now though and we still have a few weeks of Daniel feeling well before he gets sick and we have hospice come in to our home. We still have time to enjoy every moment, make memories, and let Daniel be a kid. Many people don't get this rare opportunity before a loved one passes. A year ago when Daniel's cancer returned the first time (9 months after the first diagnosis and while still undergoing chemo) we went on an amazing Make-A-Wish Trip to Florida to meet Lightning McQueen. We were able to put everything aside, let Daniel be a kid, and forget about it all. As we know we only have a few weeks left of him feeling well, we will be leaving for Disneyland on Wednesday and plan to stay as long as 12 days depending on how Daniel is feeling.
We won't deny that this news is heart-wrenching, but we are comforted to know that Daniel has inspired and touched so many lives in this last year. We have learned and grown immensely during this process. Daniel has taught both Dave and I so much about what life is really about. He has so much insight for a 7 year old. Never once has he complained, he always makes a game out of procedures (his attitude and imagination are incredible), his favorite thing is to make people smile, he makes friends wherever he goes, and he loves unconditionally.
We talked to the Social Worker at Primary Children's and she told us that it is not important for a child his age to understand his prognosis. She told us that we need only answer questions as they arise and allow him to guide us on what he needs to know. So far he does not know that anything is different. He does not understand why I keep crying and tells me "I thought I told you to say get lost to those crocodile tears" or "Where's your smile? Have you lost it? You need to find it, Mom." Many of the things he is saying to comfort me are my own words back. Daniel just wants to see "his two most favorite people on earth" be happy. We are still in shock and realize that the next few weeks to months are probably going to be the most difficult challenge we've ever gone through with losing our seven-year-old child and bringing another life into the world almost at the same time. Daniel is so looking forward to being a big brother and he may not be here physically to see his little brother. There are times when Daniel will rub my tummy, put his ear up to it and say, "Hello, baby brother are you in there? I'm so excited to meet you." Moments like this are going to be very difficult. We will help Daniel to pick out a few gifts for his baby brother and make a video of him talking to his brother.
Daniel is very special. My husband Dave and I have known this for a long time. We have found comfort in our faith and knowing that this life is not the end and that we will be able to be with our sweet Daniel again. This eases the pain a bit. We pray that Daniel is able to enjoy the time he has left and that when that time comes... that it will be as pain-free and quick as possible. Thank you to everyone who has supported us through our journey over the last 2 years. We plan to continue to update this blog during the trip with sweet memories so that everyone who loves and cares for Daniel can share in the precious moments of what time he has left.
Daniel, who is now 7 years old, was diagnosed with Medulloblastoma (brain cancer) on August 20, 2009. He was initially treated with surgery, radiation, & chemotherapy. At that time we were told that the prognosis was 70-80% cure rate with a planned treatment course of approx. one year.
Unfortunately, on June 30, 2010 we found out during a followup MRI that his cancer had returned during treatment. His prognosis has gone from a moderate risk to high risk... with expected cure rate of approx. 40%. The plan of action was changed and he underwent a new chemo regimen from July through December 2010.
September 21, 2010 Daniel received a follow up MRI scan that came back with significant improvement (almost undetectable) and the lumbar punture showed no visible signs of cancer cells. This made it that we were able to move forward with the new proposed plan. In December he received High Dose Chemotherapy with Bone Marrow Rescue (where Daniel will be his own bone marrow donor). This was followed by a repeat course of 15 doses of radiation. The Bone Marrow Rescue was followed by 100 days of radiation. All MRI's since have shown no cancer present.
Daniel's July 7, 2011 was supposed to be the final MRI before being on maintenance. It was supposed to be the MRI that said we were done with treatment after 2 years. However, the scan came back showing that the cancer had returned. It is aggressive and resistant. There are no more treatment options left. Daniel will have a few weeks to 1-2 months left with us.
Despite all of this Daniel is a fun-loving, caring, silly, and happy boy. He reminds us daily how precious each moment is.
As many of you know, Daniel had his routine MRI on Thursday. This scan was supposed to be our final scan prior to being on maintenance and finally being done with treatment after 2 years. Only moments after Daniel and I returned home from the MRI, I received a phone call from the BMT doctor. He told me that there was enhancement on the scan which was concerning and that he wanted to meet with us the next day on Friday instead of waiting till Monday. During that meeting Dave and I were told that the cancer has returned and that it is aggressive and resistant. We had the opportunity to meet with the radiologist and look extensively at Daniel's MRI scans both from the day before and the one done back in April that showed no signs of cancer. Unfortunately, the new MRI shows tumor diffusely scattered on the entire surface of his brain and spinal cord. In talking to the BMT doctor, we were told that there were no good treatment options that could cure his cancer. We later talked to his primary oncologist who reiterated this. We were told that we have weeks to possibly 1-2 months left with our sweet Daniel. This news completely floored us as Daniel is doing better than he has done in 2 years and has no symptoms yet. My heart aches and I think I have cried more than humanly possible in the last couple of days.
We can not imagine life without our silly snuggle monkey. We consider ourselves lucky that we found this out now though and we still have a few weeks of Daniel feeling well before he gets sick and we have hospice come in to our home. We still have time to enjoy every moment, make memories, and let Daniel be a kid. Many people don't get this rare opportunity before a loved one passes. A year ago when Daniel's cancer returned the first time (9 months after the first diagnosis and while still undergoing chemo) we went on an amazing Make-A-Wish Trip to Florida to meet Lightning McQueen. We were able to put everything aside, let Daniel be a kid, and forget about it all. As we know we only have a few weeks left of him feeling well, we will be leaving for Disneyland on Wednesday and plan to stay as long as 12 days depending on how Daniel is feeling.
We won't deny that this news is heart-wrenching, but we are comforted to know that Daniel has inspired and touched so many lives in this last year. We have learned and grown immensely during this process. Daniel has taught both Dave and I so much about what life is really about. He has so much insight for a 7 year old. Never once has he complained, he always makes a game out of procedures (his attitude and imagination are incredible), his favorite thing is to make people smile, he makes friends wherever he goes, and he loves unconditionally.
We talked to the Social Worker at Primary Children's and she told us that it is not important for a child his age to understand his prognosis. She told us that we need only answer questions as they arise and allow him to guide us on what he needs to know. So far he does not know that anything is different. He does not understand why I keep crying and tells me "I thought I told you to say get lost to those crocodile tears" or "Where's your smile? Have you lost it? You need to find it, Mom." Many of the things he is saying to comfort me are my own words back. Daniel just wants to see "his two most favorite people on earth" be happy. We are still in shock and realize that the next few weeks to months are probably going to be the most difficult challenge we've ever gone through with losing our seven-year-old child and bringing another life into the world almost at the same time. Daniel is so looking forward to being a big brother and he may not be here physically to see his little brother. There are times when Daniel will rub my tummy, put his ear up to it and say, "Hello, baby brother are you in there? I'm so excited to meet you." Moments like this are going to be very difficult. We will help Daniel to pick out a few gifts for his baby brother and make a video of him talking to his brother.
Daniel is very special. My husband Dave and I have known this for a long time. We have found comfort in our faith and knowing that this life is not the end and that we will be able to be with our sweet Daniel again. This eases the pain a bit. We pray that Daniel is able to enjoy the time he has left and that when that time comes... that it will be as pain-free and quick as possible. Thank you to everyone who has supported us through our journey over the last 2 years. We plan to continue to update this blog during the trip with sweet memories so that everyone who loves and cares for Daniel can share in the precious moments of what time he has left.
- Daniel's Mom
a lot of the time, people don't read things like this. It's a situation you know is happening but can't read about because it's sad. I think it's an awesome reminder of how blessed each one of us are. Please don't take advantage of your ealthy body, family and friends. It's amazing to me to see how well people handle trials. I will constantly be thinking of this handsome guy. If you want to read more about Daniel here is the link to his blog.
http://www.caringbridge.org/visit/danielallen6
If you want to donate, here is the info.
Bake Sale on July 15th
3-8pm
LDS Church
Corner of 7000 South and 2700 West
in West Jordan
Contact Jen Atwood @ jenjewl@gmail.com to donate and/or help with bake sale.
For donations ONLY - PAYPAL through laniallen79@gmail.com.
It's easy to do. Go to www.paypal.com and click on give money.
http://www.caringbridge.org/visit/danielallen6
If you want to donate, here is the info.
Bake Sale on July 15th
3-8pm
LDS Church
Corner of 7000 South and 2700 West
in West Jordan
Contact Jen Atwood @ jenjewl@gmail.com to donate and/or help with bake sale.
For donations ONLY - PAYPAL through laniallen79@gmail.com.
It's easy to do. Go to www.paypal.com and click on give money.
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