I guess I could be an advertisement for Hogfather's Barbecue restaurant. "Food so good it'll make you cry!"
On Friday, Jamie brought me lunch at work. We sat in her car in the parking lot and had pulled pork sandwiches and macaroni and cheese, and I had a complete meltdown. It was the kind where you are crying so hard you can't even catch your breath.The lack of oxyegen makes you lightheaded which in turn makes you panic a little which just fuels the meltdown even more. So I sat in the car with take out boxes scattered around me sobbing uncontrollably in Jamie's arms unsure if I could break the cycle or even if I wanted to. I hadn't had a moment like that since early on in this process. I could see this one coming though.
On Wednesday while I was working from home so Jamie could go to a Dr's appointment a server at one of my remote sites completely crashed. Luckily it was a local site at Coal Center, Pa so I didn't have to hop on a plane or drive to another state. I left the house after Jamie came home to go there and do what I could. I found one of the worst scenario's possible when I arrived. I'll spare the technical details, only a handful of people reading this would understand any of it. For most people it would sound like I was speaking some weird foreign language, which honestly isn't far from the truth. Suffice to say, it was a bad situation and there were a lot of people there relying on ME to fix it.
I immersed myself in the situation and formulated a plan to get things back on track. As I began to implement my plan I started finding that nothing, and I mean nothing was going according to plan. Even the simplest tasks were turning into major ordeals and taking 10 times longer than they should. I was trying to take one step forward and was getting knocked back six. I worked late Wednesday. I got up at 4 AM on Thursday and worked the entire day on it. By the time Friday morning rolled around, everything hinged on me recovering a bunch of crucial files from the backup that was run on Tuesday before everything exploded. I had already recovered some files off that tape Wednesday night, so I didn't expect this would be much of an issue at all. I would just go into the office early on Friday and start the restore and I would be able to deliver those crucial files to the site before lunch.
I'll again spare the technical details, but nothing was working. I was hitting roadblocks at every single turn. I went into work at 6 AM. It was pushing 2 o'clock and I had accomplished nothing.
I was already extremely frustrated, stressed and worried when Jamie called me to tell me that she had received the results of Aidan's blood work. The Nurse usually calls with those results. On Friday one of Aidan's primary oncologists called.
There are a couple of key measurements they look at. One is called ANC (absolute neutrophil count) which is essentially a measure of is immune system. In order for Aidan to be able to undergo any chemotherapy treatments his ANC needs to be 750. On Friday his ANC was 50. The other number of concern was his hemoglobin level. When he left the hospital on Monday, his hemoglobin measurement was 9.1. The "normal level" for kids is 11-14. When it drops into the 8's is when you start to see symptoms of anemia like listlessness, pale complexion, light headiness etc. When those symptoms appear it means that a blood transfusion is in order. On Friday Aidan's hemoglobin level was 7.7.
Those numbers themselves were scary, but even scarier was that it was very possible that they would fall even more. Those numbers typically bottom out seven to ten days after the completion of a chemotherapy treatment. When his blood was drawn on Thursday night, it was not even day five. It's important to note that though his levels were concerning even for his doctors, they did stress that seeing such a dramatic drop after five straight days of chemotherapy is not only normal but expected. Having never been through this type of thing before that wasn't much of a comfort to us.
The possibility of an unexpected hospitalization and blood transfusion loomed over us like one of those cumulonimbus clouds Aidan is learning about with his homebound instructor. The weekend was going to be scary and we were going to have to on high alert and monitor him extremely closely. That news on top of the work crisis was too much for me.
I know we were talking about Aidan and his cancer (which is a topic in nearly every single conversation we have these days,) but I don't even remember specifically what prompted my epic meltdown. I do remember in the middle of it Jamie telling me just to let it all out, that I'd feel better afterwards. It did help a little but I still felt like I was out on a ledge just one misstep from plunging into a dark abyss. It wasn't until after I went for my run and ran substantially faster than I normally do that I felt more normal.
It's Sunday night now and I'm happy to report that the work crisis has been mostly dealt with and Aidan has made it through the weekend thus far with no issues whatsoever. (I just knocked on the wooden computer desk)
Hopefully we make it through tonight with no issues and when his blood is drawn tomorrow we'll see that his blood counts are recovering and we don't have to delay his chemotherapy on Wednesday. I also hope that it'll be a little while before I have another meltdown like the one I had Friday.
Sunday, October 21, 2012
Sunday, October 14, 2012
Perspective
I get on the elevator on the first floor with a bunch of other people. There are doctors, nurses, other parents, visitors etc. The elevator stops at random floors as we ascend and one by one they exit. By the time I arrive at my destination, they are all gone. The bell dings. The computer voice says "floor 9." The doors glide open. I step out onto the hematology / oncology floor alone and a little piece of my heart breaks.
Before we got this diagnosis, I said that every time we ended up at Childrens hopsital that along with the great care we received we also got a healthy dose of perspective. We would see kids and families in far worse situations and we would feel grateful for all that we had.
I'll be completely honest and tell you that when your kid has cancer it's a lot harder to find that perspective. Aidan is now one of the patients that we felt sorry for on our previous visits. He's the little bald kid pushing around a big IV pole in the cafeteria. He's now the patient who helps the parents of the kid who is in for an appendectomy realize just how fortunate they really are.
I'll be completely honest and tell you that when your kid has cancer it's a lot harder to find that perspective. Aidan is now one of the patients that we felt sorry for on our previous visits. He's the little bald kid pushing around a big IV pole in the cafeteria. He's now the patient who helps the parents of the kid who is in for an appendectomy realize just how fortunate they really are.
It's not entirely impossible for us to gain perspective though and on the good days I feel like we still have it in spades.
We met a family here whose 9 moth old, Nolan, awaits a heart transplant. Yesterday he underwent open heart surgery to have an artificial heart installed while the transplant team continues to look for an acceptable donor heart. There are kids on our floor who are younger than Aidan and have already endured several surgeries to resect their tumors. Many patients on this floor have to have bone marrow transplants. One of the patients on our floor is a small baby who can't be more than a year old. I met a mom in the unit pantry whose daughter had relapsed after being in remission for over a year. Today in the elevator Jamie met an Amish lady who tearfully told her that her grandson has just passed away.
Yes, Aidan has cancer and no, there are no guarantees, but it is treatable. His particular disease has a pretty good cure rate and we found the cancer before it had metastasized. We've been through one full round of chemotherapy and he's tolerating it really well aside from a few minor side effects. When we've been in the hospital the biggest issue we have had to deal with is Aidan getting homesick and sad.
I still never would want anyone to have to go through what we currently are, but things could definitely be worse. On the good days we see this clearly and our hearts go out to those families whose burden is more than we could possibly imagine. On the bad days, it's hard to find that perspective. It's hard to do much of anything except cry, but RIGHT NOW I know that in spite of everything we are still very fortunate to have these wonderful boys, an amazing support network of family and friends, and an amazing team of medical professionals working hard to get Aidan better.
Wednesday, October 10, 2012
Spook-tober
If you took a poll of our friends and asked them what their favorite holiday was, Halloween would win by a landslide. Our friends throw annual costume parties and spend most of the year planning their costumes. We have friends that actually work at a haunted house and most of our friends can't wait to head to rich's fright farm or phantom fright nights at Kennywood park. They all love their horror movies as well. New Releases, classics and awful 70s camp films are all consumed with the same enthusiasm. When the weather turns cooler and the leaves start to turn our friends are excited and ready to be scared.
Personally I'm relatively indifferent about the whole thing. Aside from the one year that I trick or treated in a homemade Chewbacca costume, (someday I will tell that story at a Moth story slam night) I've always had positive Halloween experiences. I don't mind horror films when they are well done and generally gore doesn't really bother me. I could take or leave the haunted house experience, but I had a really fun fall semester in college when I worked as part of the haunted cave tour at Laurel Caverns.
Jamie on the other hand is far from indifferent on this matter. And I think it's pretty easy to tell what side of the fence she is on by disclosing that aside from the occasional psychological thriller, we haven't watched even one honest to goodness horror movie in all the years we've been together. She also has this theory about haunted houses which would probably make a fantastic horror screenplay. The theory suggests that there wouldn't be any better place for a crazed serial killer to blend in and harvest victims than among a bunch of people working at a haunted house pretending to be crazed serial killers.
When October comes and our friends start trying to decide which haunted houses they will visit and planning to view the entire saw series in one night with the lights off we celebrate in a much more genial way. We dress the kids up to collect candy from our fine neighbors and we don some sort of clever couples costume and attend a few annual parties thrown by our friends. We intentionally keep the scary and frightening away from our family.
This year we can't keep the scary and frightening away. The call is coming from inside the house and it's cancer on the line.
Everything is terrifying now in one way or another. The mold on our old dishwasher and on the calking on the tub is a health concern that we have to deal with. Watching Dylan drink from everyone else's water glasses despite having his own is unnerving. Seeing Aidan touch all manner of things around the house (pencils, keyboard, mouse, toys etc) and then stick those same fingers in his mouth is beyond chilling and I think it's seriously going to give us some sort of fright induced cardiac episode. We don't need to visit any haunted houses this Halloween season. We are living in one. I'd say come over and be scared too but NO VISITORS ALLOWED!
Aidan is no longer a "normal kid" he's a cancer patient on chemotherapy and now EVERYTHING is a big deal and it's all scary. Aches and pain and benign symptoms that most parents would take a wait and see approach with have to be reported to his oncology Drs. and given due process. Fevers, headaches, nausea, muscle aches and lethargy are pretty common for kids to experience. Most kids take the day off of school eat chicken soup and watch Nickelodeon all day. If Aidan experiences any of these symptoms alone or in combination there's a better than average chance we are getting admitted to the hospital.
This past Sunday, after Jamie and I returned from the Steeler game, we spent the rest of the night at the Children's hospital ER with Aidan and we were terrified the whole time. Aidan was complaining of back pain and we had no idea what to do. He didn't appear to be in a lot of pain, but back pain was what started this whole process that lead us to finding out he has cancer. The questions and fears were impossible to keep at bay. Has it spread? Does he has some weird infection now? Did we miss a tumor the first time? I spent most of the night feeling like I was going to either throw up or crap my pants (occasionally it felt like there was a distinct possibility both were going to happen at the exact same time) The story has a happy ending though. The Drs attributed his pain to his blood cells regenerating and causing discomfort similar to "growing pains." The pain was localized right to the spot where he had his bone marrow biopsy so this explanation made a lot of sense to my non medical but relatively logical mind. He has felt great for the past couple of days with no need for any pain medication.
By far the scariest part of all of this is the feeling of helplessness and uncertainty. It's heart wrenching, and indescribable. Parents who are going or have gone what we are going through who would understand. You can't put it into words though. There are no adjectives or adverbs that can adequately describe how torturous it is to watch your child suffer and know there is nothing you can do to do to make it hurt less. If I could take it all from him and do it for him I would. I would do the chemotherapy radiation and surgery. I would let them put a hundred IVs in me. I'd suffer all the side effects. I know that 38 years isn't a long time to walk this earth, but if I could trade just another year of life for the promise of both of my boys growing up happy and healthy men, I would do it without hesitation and without fear.
Personally I'm relatively indifferent about the whole thing. Aside from the one year that I trick or treated in a homemade Chewbacca costume, (someday I will tell that story at a Moth story slam night) I've always had positive Halloween experiences. I don't mind horror films when they are well done and generally gore doesn't really bother me. I could take or leave the haunted house experience, but I had a really fun fall semester in college when I worked as part of the haunted cave tour at Laurel Caverns.
Jamie on the other hand is far from indifferent on this matter. And I think it's pretty easy to tell what side of the fence she is on by disclosing that aside from the occasional psychological thriller, we haven't watched even one honest to goodness horror movie in all the years we've been together. She also has this theory about haunted houses which would probably make a fantastic horror screenplay. The theory suggests that there wouldn't be any better place for a crazed serial killer to blend in and harvest victims than among a bunch of people working at a haunted house pretending to be crazed serial killers.
When October comes and our friends start trying to decide which haunted houses they will visit and planning to view the entire saw series in one night with the lights off we celebrate in a much more genial way. We dress the kids up to collect candy from our fine neighbors and we don some sort of clever couples costume and attend a few annual parties thrown by our friends. We intentionally keep the scary and frightening away from our family.
This year we can't keep the scary and frightening away. The call is coming from inside the house and it's cancer on the line.
Everything is terrifying now in one way or another. The mold on our old dishwasher and on the calking on the tub is a health concern that we have to deal with. Watching Dylan drink from everyone else's water glasses despite having his own is unnerving. Seeing Aidan touch all manner of things around the house (pencils, keyboard, mouse, toys etc) and then stick those same fingers in his mouth is beyond chilling and I think it's seriously going to give us some sort of fright induced cardiac episode. We don't need to visit any haunted houses this Halloween season. We are living in one. I'd say come over and be scared too but NO VISITORS ALLOWED!
Aidan is no longer a "normal kid" he's a cancer patient on chemotherapy and now EVERYTHING is a big deal and it's all scary. Aches and pain and benign symptoms that most parents would take a wait and see approach with have to be reported to his oncology Drs. and given due process. Fevers, headaches, nausea, muscle aches and lethargy are pretty common for kids to experience. Most kids take the day off of school eat chicken soup and watch Nickelodeon all day. If Aidan experiences any of these symptoms alone or in combination there's a better than average chance we are getting admitted to the hospital.
This past Sunday, after Jamie and I returned from the Steeler game, we spent the rest of the night at the Children's hospital ER with Aidan and we were terrified the whole time. Aidan was complaining of back pain and we had no idea what to do. He didn't appear to be in a lot of pain, but back pain was what started this whole process that lead us to finding out he has cancer. The questions and fears were impossible to keep at bay. Has it spread? Does he has some weird infection now? Did we miss a tumor the first time? I spent most of the night feeling like I was going to either throw up or crap my pants (occasionally it felt like there was a distinct possibility both were going to happen at the exact same time) The story has a happy ending though. The Drs attributed his pain to his blood cells regenerating and causing discomfort similar to "growing pains." The pain was localized right to the spot where he had his bone marrow biopsy so this explanation made a lot of sense to my non medical but relatively logical mind. He has felt great for the past couple of days with no need for any pain medication.
By far the scariest part of all of this is the feeling of helplessness and uncertainty. It's heart wrenching, and indescribable. Parents who are going or have gone what we are going through who would understand. You can't put it into words though. There are no adjectives or adverbs that can adequately describe how torturous it is to watch your child suffer and know there is nothing you can do to do to make it hurt less. If I could take it all from him and do it for him I would. I would do the chemotherapy radiation and surgery. I would let them put a hundred IVs in me. I'd suffer all the side effects. I know that 38 years isn't a long time to walk this earth, but if I could trade just another year of life for the promise of both of my boys growing up happy and healthy men, I would do it without hesitation and without fear.
Friday, October 5, 2012
Faith
Since we received our diagnosis on Sept 21st 2012, we have been showered with kind words from family, friends, and even strangers. The most common sentiment we have heard is "our thoughts and prayers are with you and your family" Many folks have even put Aidan on the prayer lists at their respective places of worship and we have received a couple of lovely gifts from various church groups that our friends belong to. Others have simply said they are thinking of us, or sending positive healing energy our way.
Jamie and I appreciate those sentiments and what we take away from both is that our family is loved and that folks are pulling for us to get through this tremendous battle that we have just started. The fact that people are taking the time every day to reflect on our situation and wish us well helps us feel less alone and gives us just a bit more strength to push onward. So please keep thinking about us and wishing us well in any way that is a comfort to you.
I mentioned in a Facebook status when this all began that we are a spiritual family and not necessarily a religious one. As we continue to move forward in this journey, I think now may be a good time to clarify and expound on that statement.
We believe that we are all connected to each other and all things. Through those connections we are also connected to a greater universal energy that is omnipresent. I have felt these connections and been filled with this energy. I've felt it standing on the shore of a vast ocean as the tides laps cool water over my toes. I've felt it sitting in front of a warm fire on a quiet and clear night when there are too many stars to even count. I've felt it on runs with the dog, when we sync our strides, the world melts away, and movement seems effortless. I've felt it in art and music. Mostly though I feel it in our family. I feel it when I hug the boys tight and kiss them on the forehead. I feel it when Jamie and I embrace and kiss.
We believe this energy is pure and infinite and that it is the alpha and omega of all things. We don't believe that this energy rewards or punishes. We don't believe it creates destinies or changes the course of people's lives. It simply just exists as part of us, connecting us to all things. Believe it or not, this has been a great comfort to us during this ordeal.
Life, on a molecular and cellular level, is a complicated and extremely fragile process. The margins for error are ridiculously minuscule and because of this sometimes even beautiful and innocent children get very sick and even sometimes die. We don't have to ask "Why us?" We don't try to discern what we are meant to learn from this struggle or how having such a wonderful child get cancer could be part of any master plan. We just accept that IT IS and we focus our energies on dealing with it the best we can.
We place our faith in Aidan's doctors, nurses, and all the wonderful staff at Children's Hospital of Pittsburgh. We place our faith in the cancer researchers all across the world tirelessly working to develop new treatments for this awful disease while they work towards the goal of finding a cure. We put our faith in the love of friends and family to see us through this battle as it has done so many times before. In moments of joy we embrace and celebrate our connections and bask in the energy. In times of struggle we try to reflect and be still to feel those connections and be filled with that spirit once again.
As I said before, we welcome prayers, thoughts, healing vibes and incantations of all forms. The very fact that people are taking time to introspectively reflect on our family and our situation means a great deal to us. We love and are connected to each and every one of you.
Jamie and I appreciate those sentiments and what we take away from both is that our family is loved and that folks are pulling for us to get through this tremendous battle that we have just started. The fact that people are taking the time every day to reflect on our situation and wish us well helps us feel less alone and gives us just a bit more strength to push onward. So please keep thinking about us and wishing us well in any way that is a comfort to you.
I mentioned in a Facebook status when this all began that we are a spiritual family and not necessarily a religious one. As we continue to move forward in this journey, I think now may be a good time to clarify and expound on that statement.
We believe that we are all connected to each other and all things. Through those connections we are also connected to a greater universal energy that is omnipresent. I have felt these connections and been filled with this energy. I've felt it standing on the shore of a vast ocean as the tides laps cool water over my toes. I've felt it sitting in front of a warm fire on a quiet and clear night when there are too many stars to even count. I've felt it on runs with the dog, when we sync our strides, the world melts away, and movement seems effortless. I've felt it in art and music. Mostly though I feel it in our family. I feel it when I hug the boys tight and kiss them on the forehead. I feel it when Jamie and I embrace and kiss.
We believe this energy is pure and infinite and that it is the alpha and omega of all things. We don't believe that this energy rewards or punishes. We don't believe it creates destinies or changes the course of people's lives. It simply just exists as part of us, connecting us to all things. Believe it or not, this has been a great comfort to us during this ordeal.
Life, on a molecular and cellular level, is a complicated and extremely fragile process. The margins for error are ridiculously minuscule and because of this sometimes even beautiful and innocent children get very sick and even sometimes die. We don't have to ask "Why us?" We don't try to discern what we are meant to learn from this struggle or how having such a wonderful child get cancer could be part of any master plan. We just accept that IT IS and we focus our energies on dealing with it the best we can.
We place our faith in Aidan's doctors, nurses, and all the wonderful staff at Children's Hospital of Pittsburgh. We place our faith in the cancer researchers all across the world tirelessly working to develop new treatments for this awful disease while they work towards the goal of finding a cure. We put our faith in the love of friends and family to see us through this battle as it has done so many times before. In moments of joy we embrace and celebrate our connections and bask in the energy. In times of struggle we try to reflect and be still to feel those connections and be filled with that spirit once again.
As I said before, we welcome prayers, thoughts, healing vibes and incantations of all forms. The very fact that people are taking time to introspectively reflect on our family and our situation means a great deal to us. We love and are connected to each and every one of you.
Wednesday, October 3, 2012
Getting back to normal?
After a rough couple of post chemotherapy days, Aidan bounced back on Sunday and since then has been the same 9 year old that we all love. If he had a long sleeve shirt on that covered his picc line you'd probably never even guess he was sick at all.
That wasn't the case last Friday or Saturday. The chemotherapy kicked his butt pretty good. His throat was sore and it hurt to swallow even water. He had little appetite and even when he was hungry, eating was a bit of an adventure because one of his medicines was making his jaw and teeth hurt pretty badly. Giving him Tylenol helped a little bit, but he was still generally pretty miserable and run down. He handled it like a trooper though and we did anything and everything to make him as comfortable as we could.
On Sunday afternoon he found himself again and had a fun day at Grandma's house playing board games and watching TV. He felt so good he even spent the night. His brother joined him in the afternoon on Monday giving Jamie a much needed break.
When I picked the boys up Monday evening, things truly had returned to normal, they fought like cats and dogs pretty much the entire way home. When I asked Aidan as nicely as I could to "Please stop instigating and tormenting your little brother" his response was "But it's fun!" Yep, back to normal. Except, not quite, really.
Two weeks ago I wouldn't have been able to listen to more than minute of the back seat arguing before raising my voice. Monday it was comforting to hear the 4 year old whining and demanding Aidan stop saying whatever annoying thing he kept repeating. (Just because I took some comfort in it doesn't mean I didn't try my best to completely ignore it.) They almost made it halfway home (about 15 minutes) before I demanded they knock it off and be nicer to each other.
Aidan even felt well enough to get out of the house and go to a movie yesterday. His blood counts were exceptional so it wasn't a huge risk to have him out especially for a matinee when most kids are in school. Even though Jamie and I would prefer to never let him leave the house for the next 9 months, it's important to allow him to do stuff like this when he's able..
For what it's worth, I seem to be finding my way back to normal as well. These last few weeks have been really hard.I know that I'll be forever changed by them and the journey we have ahead of us, but there have been a couple of moments when things are quiet, (like trying to go to sleep or waking up in the middle of the night) where I wondered, for example, if I'd ever get my sense of humor back. I wondered if I'd ever be able to talk about this diagnosis and treatment without finding myself on the verge of a breakdown.
I'm definitely getting there. I had those conversations today and stayed composed I laughed really hard about the silliest things today, and I saidamazingly witty silly things that I hope have made other people smile or chuckle. It's still a work in progress, but I'm headed in the right direction.
Aidan goes for more chemotherapy today. It's just an outpatient visit and he just gets one dose of a single medication. I hope that it doesn't hit him too hard and we can continue to ride this happy wave we are currently on, but we'll deal with whatever happens as best we can.
That wasn't the case last Friday or Saturday. The chemotherapy kicked his butt pretty good. His throat was sore and it hurt to swallow even water. He had little appetite and even when he was hungry, eating was a bit of an adventure because one of his medicines was making his jaw and teeth hurt pretty badly. Giving him Tylenol helped a little bit, but he was still generally pretty miserable and run down. He handled it like a trooper though and we did anything and everything to make him as comfortable as we could.
On Sunday afternoon he found himself again and had a fun day at Grandma's house playing board games and watching TV. He felt so good he even spent the night. His brother joined him in the afternoon on Monday giving Jamie a much needed break.
When I picked the boys up Monday evening, things truly had returned to normal, they fought like cats and dogs pretty much the entire way home. When I asked Aidan as nicely as I could to "Please stop instigating and tormenting your little brother" his response was "But it's fun!" Yep, back to normal. Except, not quite, really.
Two weeks ago I wouldn't have been able to listen to more than minute of the back seat arguing before raising my voice. Monday it was comforting to hear the 4 year old whining and demanding Aidan stop saying whatever annoying thing he kept repeating. (Just because I took some comfort in it doesn't mean I didn't try my best to completely ignore it.) They almost made it halfway home (about 15 minutes) before I demanded they knock it off and be nicer to each other.
Aidan even felt well enough to get out of the house and go to a movie yesterday. His blood counts were exceptional so it wasn't a huge risk to have him out especially for a matinee when most kids are in school. Even though Jamie and I would prefer to never let him leave the house for the next 9 months, it's important to allow him to do stuff like this when he's able..
For what it's worth, I seem to be finding my way back to normal as well. These last few weeks have been really hard.I know that I'll be forever changed by them and the journey we have ahead of us, but there have been a couple of moments when things are quiet, (like trying to go to sleep or waking up in the middle of the night) where I wondered, for example, if I'd ever get my sense of humor back. I wondered if I'd ever be able to talk about this diagnosis and treatment without finding myself on the verge of a breakdown.
I'm definitely getting there. I had those conversations today and stayed composed I laughed really hard about the silliest things today, and I said
Aidan goes for more chemotherapy today. It's just an outpatient visit and he just gets one dose of a single medication. I hope that it doesn't hit him too hard and we can continue to ride this happy wave we are currently on, but we'll deal with whatever happens as best we can.
Tuesday, October 2, 2012
Lies
At some point when I was little, I believed as most children do that everything grows on trees (or at least from some type of plant.) So it was one spring that I went outside and planted a lollipop stick at the base of an existing tree. I don't know if it was the next morning or several mornings after, but I vividly remember walking outside one morning and seeing that tree covered in fresh lollipops. Of course, I eventually learned that lollipops, in fact, did not grow on trees. Over 30 years later, I still hold onto to that memory and now it is a reminder of how much I was loved.
I thought of this memory last week when we were readmitted to the hospital on the oncology floor. We were so excited to be discharged from the hospital the day before that we accidentally left Aidan's stuffed monkey, Coco, in our room on the 7th floor. When we realized what had happened I called the hospital and checked with the nurses on the unit we were previously on. I called and asked if Coco was in the lost and found. Neither called proved successful and Coco was unfortunately lost.
Coco was just an ordinary Toys R Us stuffed animal and we actually had another identical monkey in the house. When you're nine though, it's just not the same. To his credit, Aidan didn't make a big deal out of losing Coco but you could tell he was pretty sad and disappointed. When we went back into the hospital we told him we'd keep asking around and hopefully Coco would turn up.
The next time my parents visited we had them pick up another monkey from Toys R Us. We had initially just planned to present it to Aidan as a replacement to Coco with our sincerest apologies for being neglectful and losing the original Coco. When the new monkey arrived though I flashed back to that lollipop tree and Jamie and I decided it would be OK to tell him a little lie.
I thought of this memory last week when we were readmitted to the hospital on the oncology floor. We were so excited to be discharged from the hospital the day before that we accidentally left Aidan's stuffed monkey, Coco, in our room on the 7th floor. When we realized what had happened I called the hospital and checked with the nurses on the unit we were previously on. I called and asked if Coco was in the lost and found. Neither called proved successful and Coco was unfortunately lost.
Coco was just an ordinary Toys R Us stuffed animal and we actually had another identical monkey in the house. When you're nine though, it's just not the same. To his credit, Aidan didn't make a big deal out of losing Coco but you could tell he was pretty sad and disappointed. When we went back into the hospital we told him we'd keep asking around and hopefully Coco would turn up.
The next time my parents visited we had them pick up another monkey from Toys R Us. We had initially just planned to present it to Aidan as a replacement to Coco with our sincerest apologies for being neglectful and losing the original Coco. When the new monkey arrived though I flashed back to that lollipop tree and Jamie and I decided it would be OK to tell him a little lie.
We gave the monkey to his doctors and explained the situation. Not only were they receptive to participating in our little ruse, but Dr. Courtney made sure that we had removed the tags and even roughed up the new Coco so that he looked like he'd been stuck in the hospital laundry.
The reveal couldn't have went any better. Seeing the joy on Aidan's face was definitely worth the deception.
The reveal couldn't have went any better. Seeing the joy on Aidan's face was definitely worth the deception.
I said in the very first post that I planned on being very emotionally honest and this is going to be one of those times.
I know that a big reason why Aidan is handling all of this so well is because he trusts us implicitly when we tell him that everything is going to be OK - that despite how awful the chemotherapy will be at times, we just have to get through it because he is going to be fine. And I hope and wish that we are telling him the truth, but we can't know if we are. We have no guarantees. The weight of it is almost too much for me and it's why I am so often just on the brink of tears. I'm okay with lying about lollipop trees, replacement monkeys, Santa Claus, and the tooth fairy, for example. But when I hug him and tell him everything is going to be okay,I can't have that be a lie.
I know that a big reason why Aidan is handling all of this so well is because he trusts us implicitly when we tell him that everything is going to be OK - that despite how awful the chemotherapy will be at times, we just have to get through it because he is going to be fine. And I hope and wish that we are telling him the truth, but we can't know if we are. We have no guarantees. The weight of it is almost too much for me and it's why I am so often just on the brink of tears. I'm okay with lying about lollipop trees, replacement monkeys, Santa Claus, and the tooth fairy, for example. But when I hug him and tell him everything is going to be okay,I can't have that be a lie.
Monday, October 1, 2012
Stronger than me?
Those of you that have had a chance to get to know Aidan, know that he is an incredibly smart and compassionate boy. For those of you who may be reading this who don't know him that well, let me tell you why he is amazing.
I know that in a previous post I had said I wasn't going to attempt to individually thank all of the people who touched us with their generosity and support because undertaking such a task would be near impossible. I do have to make an exception to tell this story, however.
The Bentworth school district and Aidan's principle (Susie Macik) in particular, have gone above and beyond for our family. Not only have they worked with us to ensure that Aidan doesn't get academically left behind during this ordeal, they have also made sure that he is not socially forgotten either. He has received piles of cards from his classmates, They are actively participating in a wonderful program called "There's a monkey in my chair" (http://www.monkeyinmychair.org.) Mrs. Macik, even came to visit him, bringing him a Rubik's cube and balloons and Jamie and me hugs and kind words. She also organized a video chat with Aidan and the entire 4th grade the afternoon before he started his chemotherapy.
Aidan settled into the hospital rocking chair and after a little bit of technical difficulty he was connected via Skype to all of his classmates and teachers. Jamie and I had asked Dana, the child life specialist on our floor, to be present in case Aidan received any questions that he wasn't comfortable answering.
Initially the questions were the kind you'd expect from 9 year olds. How is the food, is there fun stuff to do, Did Aidan get their cards, etc. I could see that as the video chat progressed he was becoming more comfortable. When their weren't any more "easy questions" left for the kids to ask, the chat got a little awkward.
Without hesitation, Aidan said "Does anyone have any questions about why I'm here or what I have?"
One of his classmates immediately asked "What do you have?"
"I have a kind of bone cancer. It's in my back and I have to get a lot of treatments for it. That's why I can't be in school because the treatments will kill all the bad cells in my body but the medicine will also kill some of my good cells too and my immune system won't be very strong so I could get sick if I came to school."
He went on to talk about how he would lose his hair and would probably wear a lot of hats and how he might be really tired from the chemo etc. In all 9 years of his life, I don't know that I've ever been any prouder of him than Watching how frankly and eloquently he was able to talk about his diagnosis with his classmates.
Aidan has always been a sensitive kid. There have been many times where I thought and even told him that he needs to toughen up. He has no pain tolerance at all. He cries at getting band aids removed, his phobia of needles is off the charts (I don't think any of the patients or staff on the 9th floor will soon forget him getting his flu shot on discharge day) and he even sometimes gets teary when things don't go his way on his favorite video games. But let me tell you, that boy is tough. He is so incredibly and unbelievably strong. He is an inspiration to me.
I hope that I can be as strong as he is through this journey.
I know that in a previous post I had said I wasn't going to attempt to individually thank all of the people who touched us with their generosity and support because undertaking such a task would be near impossible. I do have to make an exception to tell this story, however.
The Bentworth school district and Aidan's principle (Susie Macik) in particular, have gone above and beyond for our family. Not only have they worked with us to ensure that Aidan doesn't get academically left behind during this ordeal, they have also made sure that he is not socially forgotten either. He has received piles of cards from his classmates, They are actively participating in a wonderful program called "There's a monkey in my chair" (http://www.monkeyinmychair.org.) Mrs. Macik, even came to visit him, bringing him a Rubik's cube and balloons and Jamie and me hugs and kind words. She also organized a video chat with Aidan and the entire 4th grade the afternoon before he started his chemotherapy.
Aidan settled into the hospital rocking chair and after a little bit of technical difficulty he was connected via Skype to all of his classmates and teachers. Jamie and I had asked Dana, the child life specialist on our floor, to be present in case Aidan received any questions that he wasn't comfortable answering.
Initially the questions were the kind you'd expect from 9 year olds. How is the food, is there fun stuff to do, Did Aidan get their cards, etc. I could see that as the video chat progressed he was becoming more comfortable. When their weren't any more "easy questions" left for the kids to ask, the chat got a little awkward.
Without hesitation, Aidan said "Does anyone have any questions about why I'm here or what I have?"
One of his classmates immediately asked "What do you have?"
"I have a kind of bone cancer. It's in my back and I have to get a lot of treatments for it. That's why I can't be in school because the treatments will kill all the bad cells in my body but the medicine will also kill some of my good cells too and my immune system won't be very strong so I could get sick if I came to school."
He went on to talk about how he would lose his hair and would probably wear a lot of hats and how he might be really tired from the chemo etc. In all 9 years of his life, I don't know that I've ever been any prouder of him than Watching how frankly and eloquently he was able to talk about his diagnosis with his classmates.
Aidan has always been a sensitive kid. There have been many times where I thought and even told him that he needs to toughen up. He has no pain tolerance at all. He cries at getting band aids removed, his phobia of needles is off the charts (I don't think any of the patients or staff on the 9th floor will soon forget him getting his flu shot on discharge day) and he even sometimes gets teary when things don't go his way on his favorite video games. But let me tell you, that boy is tough. He is so incredibly and unbelievably strong. He is an inspiration to me.
I hope that I can be as strong as he is through this journey.
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