This was a tough day today, we we had to say good-bye to one of my patients whom I cared for that lived an amazing life. Attached is a letter I read today at his funeral. Chris and I were so lucky to be a part of Brandon's life over the past few years with various Four Diamonds event and most recently at Camp Can Do. He taught us very important life lessons, as all the children do that I care for every day. Here is a copy of the letter I wrote....Dear Brandon –
Hey little man, it’s just Melissa . I decided to write you a little letter to tell you just how much you mean to me! It is hard to believe it’s been 4 ½ years since we met for the first time. You were just a little guy coming in for your chemotherapy visits while I worked as a staff nurse on the floor. I always enjoyed taking care of you and meeting your Mommy, Daddy, sister and brothers for the very first time. I must admit that I was a little nervous when I first took care of you because I knew your Mommy was watching every little move I made, especially while you underwent your bone marrow transplant and then received that experimental antibody that sent you to the Intensive Care Unit soon after. Even in your sickest moments through transplant, you still managed to play and you tolerated all of the really tough things we threw at you. I thought then I was lucky then to have cared for such a neat kid and his family.
However, I had no idea what experiences were in store for me. When you relapsed in 2006 and started chemotherapy again, you were admitted for a fever one day. When I went in to hook you up to your antibiotics, your Mommy said to me, “So, I hear you are going to be our nurse now.” I had just accepted my new job as Dr. Powell’s nurse and had not announced that yet. However, this just affirmed to me that your Mommy knew everything that was going on – and I was going to have a really tough job ahead of me. I am not going to lie to you and say I wasn’t nervous. Your Mommy also told me that I was going to have some tough shoes to fill as I was taking over for a nurse named Pam who Brandon adored. In your little voice though, you told me you were happy I was going to be your nurse.
Jumping into my new nurse specialist role then enabled me to really spend great amounts of time with you and your family working together to make the best plan for you right alongside Dr. Powell. In a few short weeks, I learned that your Mommy knew more about neuroblastoma than anyone I knew and she taught me so much. You spent almost every day in the clinic receiving chemotherapy and I can picture you coming into the clinic throughout the different days….always asking for Nurse Holly to access your port, sometimes riding in on a skateboard, sometimes zipping down the hall in your heelies, sometimes with your bouncy ball that we finally had to give you a room to bounce it in! Sometimes you were dressed in your football jersey, other times in Mommy’s sweatshirt that almost came down and hit the floor. Sometimes with a baseball hat on, other times with that awesome grey THON hat. No matter what the day, everyone knew when Brandon came to the clinic. It was so amazing to me that coming to the hospital just became a routine to you, and it wasn’t one that you ever complained about. You just made the best of it and always had your backpack packed for the day spent in the quiet room building legos or watching movies. Oh and how can I forget your bug juice or Mountain Dew bottle with you at all times so that you could have something good to wash the most disgusting medicines that we made you take down?
When your ugly neuroblastoma reared its head again, you headed down to CHOP to see the doctor there, “Maris” as you called him, and your Mommy had once again done her research. I will never forget her calling me from Philadelphia going over the new plan with me. This was one of many important phone calls we would share together. You, an almost 8 year old now absolutely hated going to Philadelphia – but there was no way you were going to stop fighting. You settled into taking your new medicine and even when the neuroblastoma had a mind of its own to keep on growing– YOU and your family stepped up and said, “What’s next?” I have never seen a family or a child like you fight quite so hard. Now, I am not going to lie and say that I didn’t see those little lips of your pursed while you shook your head with disappointment knowing you had to try something else. Later, did I realize that facial expression was one of the faces I remember most. You then underwent high dose MIBG therapy next, which finally helped relieve some of your pain which was a blessing. You kept that positive attitude even through the second MIBG treatment. How did you do it? I remember you and I chatting at Christmas time and I asked you what you wanted for Christmas and you told me PIZZA – what other 8 year old asks for something as simple as pizza?
Even though you hated the trip to Philadelphia and would have much rather been here in Hershey, you and your Mommy knew the expert on neuroblastoma was there and you continued then an attempt at 2 more Phase I trials. Darn that disease for being so difficult to treat. As a nurse walking a long side this journey with you, I don’t know how you did it. How you got on that train time after time, took all of those medications that tasted terrible. I began to learn a new definition of the world strength. Your family and you showed me that. Plus, even while you were going through treatment, your Mom and Dad were doing there best at keeping everything going at home! Soon, I was writing a reference letter for your sister Shawna – I was so excited she was thinking about being a nurse!
I will never forget the Monday after THON week-end this year. You were having a lot of pain that started right before THON, but yet it did not stop you from throwing your football around or running around with your Blue and White Society. On Monday, one of the doctors was there with me and your Mom talking, and you ran in and asked, “So, what is my cancer back?” and zipped right out of the room. There certainly was never a doubt in my mind that you ALWAYS knew what was going on and yet took the information in great strides and just continued fighting. Your only request at this time was not to go back to CHOP – and your family was willing to honor that. So, we then worked hard communicating back and forth with CHOP discussing the options for your treatment. Once again, you started chemotherapy again, which we changed 3 times in the next few months. Each treatment, you did without any complaints and even made the most of it when your hair started to come out again by making an infamous Mohawk the week-end before you came to camp.
Camp Can Do was something that you and I and your Mommy had talked about for a very long time before August came. Your Mommy and I tried really hard to plan your treatments around camp so that everything would be perfect for you to be there. Now, you had never been away from home so I must tell you that I wasn’t sure if you would come. BUT, you showed up on Sunday afternoon and little did I know that it was truly going to be the best week of my entire life. Your Mommy had kind of told me I would need to be your “Mommy” for the week - and I was so excited about spending time with you.
I should have known that you would become the highlight of the entire week at camp, loved by counselors, campers, and staff. From the very first night at camp – I think you become the “Camp Mascot – Mr. Candy Money” bringing such life to everyone around you. Unfortunately, you had a fever within the first hour you were at camp – and were just so upset about being accessed and being different from the other kids – but by the time Friday night came, you were showing the big boys at camp just how awesome you were about getting your port accessed. You were in tremendous pain throughout the week, but yet you kept on going every single day, not missing a single activity. You loved your adventure challenge, sitting by the lake playing UNO, riding around in the golf carts yelling at people who didn’t drive right, filling your pockets with tootsie rolls on occasion sharing them with people, playing games with your cabin mates and infirmary groups late at night ,collecting more money and candy at Hersheypark, getting handmade gifts from campers and counselors. What you hated was having to go to the hospital which we did have to do a few times. That disappointing face with the pursed lips and shaking of the head – yes that I did see a few times during the week. And, I loved your use of the word freakin in regards to your frustration with your cancer and having to go to the hospital. You were honest, angry, but yet did what you needed to do in order to get back with the kids.
I often think back to this week we spent together, and I love those moments when we snuggled together. I would hear you with your little voice call for “Melissa” whether it be from a golf cart or across the room, and I knew it was time for pain medicine or that you just needed to be held so that you could fall asleep. I hated that I had to access your port or give you antibiotics, but I knew doing those things would help you make the best out of your week at camp. I also knew that I had to savor those moments with you crawled up in my lap during staff meetings late at night – because you were raring to go all day long and I loved seeing you running around the dance, chasing Disney characters, putting your arms around Emily, and making friends with the oldest boys, building a race car called the Party Wagon after your brother Shea’s car…
During the last night of camp, there is always a lot of emotion as kids graduate and have to move on from camp once they are a certain age or are 5 years off of therapy. We were all standing in a friendship circle together and the graduates were standing in the middle. I was holding you and you were sobbing in my arms. You were so sad about leaving camp and all of the new friends you made. You were just an unbelievable young man that had such a passion and fought so hard for life. You wanted to live! The difference that you made on all of the people around you is something you did every single day.
Back in the “real world” after camp, your pain was getting more intensive and we were slowly losing the battle with your neuroblastoma – but yet you continued the strong fight. What other child just has the desire to go to school so bad just to be with his friends even though his body feels so lousy? Through everything you continued to want so bad to play with your friends, have sleepovers with Donald, and be with your family. Even when your pain was so intense, you still hated to take your pain medicine because you were worried that it made you mean, and didn’t want to say anything to hurt anyone’s feelings. Those are some of the things I remember most about you. I loved our conversations when you would talk about your family – you loved each and every one of them in a very special way, and worried about each and everyone one of them. You didn’t want to see them sad, and were so protective of those around you. What other 9 year cares so deeply about the feelings of others? You knew that your Mommy and Daddy did everything they possibly did to help you fight your cancer – and in the meantime made me a better nurse filled with tremendous knowledge about neuroblastoma. What you and your family taught me about being a nurse are not things you can find in a textbook or in nursing school.
The life lessons that you taught me Brandon are ones that will carry me through the rest of my life. How to live every single day to the fullest, not letting the simple things bring you down. How to fight as hard as you possibly can even when you feel like you can’t fight anymore. How to care about everyone around you, as they all are worth caring about. How family is so important and life wouldn’t exist without them. And, most of all to love with an open heart and an open mind. You gave me the greatest compliment in the world one day after camp Brandon - you called me your StepMom, and I gave you a puzzled look afterwards. You then told me it was because you loved me very much and you always were able to fall asleep in my arms holding you just like your Mommy trying to make you feel better. That was the greatest compliment I have ever received in my life and I can only hope and pray that I can be as good as a Mommy to my son as your Mommy was to you. I am so thankful for you and your family in my life, and I am so happy that you are finally free from pain, and are smiling as you are finally in Heaven and I know that you weren’t afraid.
I love you little man.
Love,
Your Melissa
Hey little man, it’s just Melissa . I decided to write you a little letter to tell you just how much you mean to me! It is hard to believe it’s been 4 ½ years since we met for the first time. You were just a little guy coming in for your chemotherapy visits while I worked as a staff nurse on the floor. I always enjoyed taking care of you and meeting your Mommy, Daddy, sister and brothers for the very first time. I must admit that I was a little nervous when I first took care of you because I knew your Mommy was watching every little move I made, especially while you underwent your bone marrow transplant and then received that experimental antibody that sent you to the Intensive Care Unit soon after. Even in your sickest moments through transplant, you still managed to play and you tolerated all of the really tough things we threw at you. I thought then I was lucky then to have cared for such a neat kid and his family.
However, I had no idea what experiences were in store for me. When you relapsed in 2006 and started chemotherapy again, you were admitted for a fever one day. When I went in to hook you up to your antibiotics, your Mommy said to me, “So, I hear you are going to be our nurse now.” I had just accepted my new job as Dr. Powell’s nurse and had not announced that yet. However, this just affirmed to me that your Mommy knew everything that was going on – and I was going to have a really tough job ahead of me. I am not going to lie to you and say I wasn’t nervous. Your Mommy also told me that I was going to have some tough shoes to fill as I was taking over for a nurse named Pam who Brandon adored. In your little voice though, you told me you were happy I was going to be your nurse.
Jumping into my new nurse specialist role then enabled me to really spend great amounts of time with you and your family working together to make the best plan for you right alongside Dr. Powell. In a few short weeks, I learned that your Mommy knew more about neuroblastoma than anyone I knew and she taught me so much. You spent almost every day in the clinic receiving chemotherapy and I can picture you coming into the clinic throughout the different days….always asking for Nurse Holly to access your port, sometimes riding in on a skateboard, sometimes zipping down the hall in your heelies, sometimes with your bouncy ball that we finally had to give you a room to bounce it in! Sometimes you were dressed in your football jersey, other times in Mommy’s sweatshirt that almost came down and hit the floor. Sometimes with a baseball hat on, other times with that awesome grey THON hat. No matter what the day, everyone knew when Brandon came to the clinic. It was so amazing to me that coming to the hospital just became a routine to you, and it wasn’t one that you ever complained about. You just made the best of it and always had your backpack packed for the day spent in the quiet room building legos or watching movies. Oh and how can I forget your bug juice or Mountain Dew bottle with you at all times so that you could have something good to wash the most disgusting medicines that we made you take down?
When your ugly neuroblastoma reared its head again, you headed down to CHOP to see the doctor there, “Maris” as you called him, and your Mommy had once again done her research. I will never forget her calling me from Philadelphia going over the new plan with me. This was one of many important phone calls we would share together. You, an almost 8 year old now absolutely hated going to Philadelphia – but there was no way you were going to stop fighting. You settled into taking your new medicine and even when the neuroblastoma had a mind of its own to keep on growing– YOU and your family stepped up and said, “What’s next?” I have never seen a family or a child like you fight quite so hard. Now, I am not going to lie and say that I didn’t see those little lips of your pursed while you shook your head with disappointment knowing you had to try something else. Later, did I realize that facial expression was one of the faces I remember most. You then underwent high dose MIBG therapy next, which finally helped relieve some of your pain which was a blessing. You kept that positive attitude even through the second MIBG treatment. How did you do it? I remember you and I chatting at Christmas time and I asked you what you wanted for Christmas and you told me PIZZA – what other 8 year old asks for something as simple as pizza?
Even though you hated the trip to Philadelphia and would have much rather been here in Hershey, you and your Mommy knew the expert on neuroblastoma was there and you continued then an attempt at 2 more Phase I trials. Darn that disease for being so difficult to treat. As a nurse walking a long side this journey with you, I don’t know how you did it. How you got on that train time after time, took all of those medications that tasted terrible. I began to learn a new definition of the world strength. Your family and you showed me that. Plus, even while you were going through treatment, your Mom and Dad were doing there best at keeping everything going at home! Soon, I was writing a reference letter for your sister Shawna – I was so excited she was thinking about being a nurse!
I will never forget the Monday after THON week-end this year. You were having a lot of pain that started right before THON, but yet it did not stop you from throwing your football around or running around with your Blue and White Society. On Monday, one of the doctors was there with me and your Mom talking, and you ran in and asked, “So, what is my cancer back?” and zipped right out of the room. There certainly was never a doubt in my mind that you ALWAYS knew what was going on and yet took the information in great strides and just continued fighting. Your only request at this time was not to go back to CHOP – and your family was willing to honor that. So, we then worked hard communicating back and forth with CHOP discussing the options for your treatment. Once again, you started chemotherapy again, which we changed 3 times in the next few months. Each treatment, you did without any complaints and even made the most of it when your hair started to come out again by making an infamous Mohawk the week-end before you came to camp.
Camp Can Do was something that you and I and your Mommy had talked about for a very long time before August came. Your Mommy and I tried really hard to plan your treatments around camp so that everything would be perfect for you to be there. Now, you had never been away from home so I must tell you that I wasn’t sure if you would come. BUT, you showed up on Sunday afternoon and little did I know that it was truly going to be the best week of my entire life. Your Mommy had kind of told me I would need to be your “Mommy” for the week - and I was so excited about spending time with you.
I should have known that you would become the highlight of the entire week at camp, loved by counselors, campers, and staff. From the very first night at camp – I think you become the “Camp Mascot – Mr. Candy Money” bringing such life to everyone around you. Unfortunately, you had a fever within the first hour you were at camp – and were just so upset about being accessed and being different from the other kids – but by the time Friday night came, you were showing the big boys at camp just how awesome you were about getting your port accessed. You were in tremendous pain throughout the week, but yet you kept on going every single day, not missing a single activity. You loved your adventure challenge, sitting by the lake playing UNO, riding around in the golf carts yelling at people who didn’t drive right, filling your pockets with tootsie rolls on occasion sharing them with people, playing games with your cabin mates and infirmary groups late at night ,collecting more money and candy at Hersheypark, getting handmade gifts from campers and counselors. What you hated was having to go to the hospital which we did have to do a few times. That disappointing face with the pursed lips and shaking of the head – yes that I did see a few times during the week. And, I loved your use of the word freakin in regards to your frustration with your cancer and having to go to the hospital. You were honest, angry, but yet did what you needed to do in order to get back with the kids.
I often think back to this week we spent together, and I love those moments when we snuggled together. I would hear you with your little voice call for “Melissa” whether it be from a golf cart or across the room, and I knew it was time for pain medicine or that you just needed to be held so that you could fall asleep. I hated that I had to access your port or give you antibiotics, but I knew doing those things would help you make the best out of your week at camp. I also knew that I had to savor those moments with you crawled up in my lap during staff meetings late at night – because you were raring to go all day long and I loved seeing you running around the dance, chasing Disney characters, putting your arms around Emily, and making friends with the oldest boys, building a race car called the Party Wagon after your brother Shea’s car…
During the last night of camp, there is always a lot of emotion as kids graduate and have to move on from camp once they are a certain age or are 5 years off of therapy. We were all standing in a friendship circle together and the graduates were standing in the middle. I was holding you and you were sobbing in my arms. You were so sad about leaving camp and all of the new friends you made. You were just an unbelievable young man that had such a passion and fought so hard for life. You wanted to live! The difference that you made on all of the people around you is something you did every single day.
Back in the “real world” after camp, your pain was getting more intensive and we were slowly losing the battle with your neuroblastoma – but yet you continued the strong fight. What other child just has the desire to go to school so bad just to be with his friends even though his body feels so lousy? Through everything you continued to want so bad to play with your friends, have sleepovers with Donald, and be with your family. Even when your pain was so intense, you still hated to take your pain medicine because you were worried that it made you mean, and didn’t want to say anything to hurt anyone’s feelings. Those are some of the things I remember most about you. I loved our conversations when you would talk about your family – you loved each and every one of them in a very special way, and worried about each and everyone one of them. You didn’t want to see them sad, and were so protective of those around you. What other 9 year cares so deeply about the feelings of others? You knew that your Mommy and Daddy did everything they possibly did to help you fight your cancer – and in the meantime made me a better nurse filled with tremendous knowledge about neuroblastoma. What you and your family taught me about being a nurse are not things you can find in a textbook or in nursing school.
The life lessons that you taught me Brandon are ones that will carry me through the rest of my life. How to live every single day to the fullest, not letting the simple things bring you down. How to fight as hard as you possibly can even when you feel like you can’t fight anymore. How to care about everyone around you, as they all are worth caring about. How family is so important and life wouldn’t exist without them. And, most of all to love with an open heart and an open mind. You gave me the greatest compliment in the world one day after camp Brandon - you called me your StepMom, and I gave you a puzzled look afterwards. You then told me it was because you loved me very much and you always were able to fall asleep in my arms holding you just like your Mommy trying to make you feel better. That was the greatest compliment I have ever received in my life and I can only hope and pray that I can be as good as a Mommy to my son as your Mommy was to you. I am so thankful for you and your family in my life, and I am so happy that you are finally free from pain, and are smiling as you are finally in Heaven and I know that you weren’t afraid.
I love you little man.
Love,
Your Melissa
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1 comment:
Wow- that was awesome, Melissa! Thank you for sharing that with those of us who weren't there.
-Jenn
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