On Friday as a large portion of the northeast prepared to be buried under copious amounts of snow, our Direct TV service started acting up. Now I know generally that Pittsburgh is considered to be part of the northeast, but if we are being geographically honest, our area is closer to the midwest. As such we weren't expected to get much in the way of snow at all and it looked like a pretty normal winter night outside. Inside, our TV was freezing up and searching for signal about every two minutes.
Jamie and I were through the snowpocalypse in 2010 in Baltimore. We saw the impact that much snow had on so many people. We felt helpless as we saw the homeless man curled up on the steps of a building with a blanket that clearly wasn't going to offer enough protection once the snow starting falling. A warm meal and hot cocoa probably wasn't much in the grand scheme of things either, but we felt like we had to do SOMETHING.
I knew this approaching blizzard was going to cause a lot of trouble for a lot of people and though I felt kinda like an asshole I still called Direct TV to see why I hell I couldn't watch the Clippers play the Heat or a rerun of Chopped on Food Network that I had most likely already seen five times.
We went through some basic trouble shooting steps and one of the things that the tech support agent kept asking me was what the weather was like. I told him it was cloudy but otherwise a normal winter night. "Bad weather and really heavy cloud cover can cause these kind of error messages" he said. I felt like he was just trying to get me off the phone without having to schedule a technician to visit. I was persistent though and finally ended up getting a service call for Tuesday afternoon.
The next morning I turned on spongebob in the morning and the service was still freezing and throwing up messages about not being able to communicate with the dish. I looked out the dining room window (which is the side of the house the dish is on) and though it didn't look unusual it was still pretty overcast with relatively heavy cloud cover. We switched over to Netflix on the Roku box.
At some point during the morning I noticed sunshine spilling onto the dining room table. the Sun was out and it was a beautiful day and wouldn't you know that a quick check of the TV showed the satellite was now working pretty much without a hitch (still the occasional pause but much rarer and not enough to really complain.)
Apparently our Direct TV dish needed a good dose of sunshine. It's been the same for us. We've needed some figurative sunshine lately and luckily we got some this past week/weekend.
Aidan finally made it through an "off" week without ending up back in the hospital for a fever and though we had mixed feelings about making or missing his scheduled Chemo last Wednesday, delaying chemotherapy for a week ended up being a really good thing. Aidan got delayed because of his platelet count which though decent (no where near transfusion levels) wasn't high enough to receive chemo. All his other numbers were great, especially his white blood count, and ANC and that meant that the odds were greatly in our favor that he was going to have a nice easy relaxing week in which he felt good and didn't really have to worry about ending up in the ER with an unexpected fever.
Aidan was able to go to a matinee showing of a movie with Jamie and Dylan Friday afternoon. Friday evening a friend of ours, Joe, came over with an old drum set which we setup in the basement. Joe then gave Aidan his first drum lesson and Aidan did really well. Aidan is generally pretty low key and isn't the most expressive or excitable kid. I was a little concerned that even if he was really interested or was really enjoying the lesson and the idea of future lessons that he wouldn't really show it. Thankfully that wasn't the case at all. He was all smiles, engaged and determined. It was really nice to see him that way. He's been practicing a little bit every day since. He goes down to the basement at various points in the day for 10-15 minutes at a time to work on the basic groove Joe showed him.
Saturday the whole family, including champ, was able to get a little sunshine. Champ got to spend a little time at an off leash dog park with us and then a bath at Woody's dog wash in South Park. It was a really nice day and we had a good time. When bed time rolled around both boys went to grandmas house and Jamie and I were granted two nights and a full day to ourselves with little concern about an unexpected hospitalization.
We had some much needed lazy time and then Sunday afternoon we gathered with our core group of friends for our regular "card club." We were short a few members but still had a fantastic time and a lot of laughs. Though I'm sure it happened at some point, I don't remember specifically talking about Aidan or cancer in any detail. We focused on funny stories, food, and games.
After card club, we were able to grab dinner with a dear friend who we haven't seen in a really long time. Since the boys were once again staying overnight at grandmas house we didn't have to rush and watch the time. We had a really nice visit. By the time we got home last night I had this strange conflicting sense of being exhausted and rejuvenated at the same time.
We're gearing up for another 5 day admission coming up on Wednesday and I'm sure that by Friday or Saturday we'll all be feeling a bit down but for now We are all feeling pretty upbeat and positive. I guess we all just needed a little bit of sunshine.
Monday, February 11, 2013
Sunday, January 27, 2013
Deserve's Got Nothing To Do With It
We're back in the hospital and I've been meaning to get some writing done and leg work done to get more songs for the Songs For Aidan project, but for most of this admission I've been swept off on a wave of apathy. This has been one of the more uneventful admissions we've had since we started this battle, but for some reason it's also felt like one of the longest. I think the cumulative effects of the hospital are starting to pile up on us the way the chemotherapy is piling up on Aidan. We've been here too much lately between chemotherapy admissions, unexpected stays for fevers and the weekday trips for radiation therapy. It's all too familiar now and every aspect of it has become tiresome - The food, the sleeping situation, the way the room is laid out, the often poor reception on the TV, the access cards that don't work 5 minutes after you add parking to them, etc. We're on day 4 of a 5 day admission and we were ready to go home about two days ago.
I get to go home tomorrow because I'm back to work at the office on Monday. Jamie and Aidan stay until radiation Monday morning and then get to come home. Once home the overwhelming boredom we feel inside the hospital will be replaced with worry as his blood counts steadily drop and we try to avoid another admission due to a fever.
Aidan hasn't had a lot of physical side effects from his treatment at all. Certainly not to the degree that a lot of kids do. He has had a sore throat on occasion and some jaw pain from the chemotherapy but he's never required anything stronger than Tylenol to give him relief. The biggest side effect for him (at least from my perspective) has been emotional. He's become much more physically clingy. We are always happy to hug the boys as much as they want, but it still makes us sad that he needs so much more physical attention these days. We can't help but think it's because deep down he feels really scared or feels unsafe. So when he leans on one of us and hugs us at really inopportune or inappropriate times (like in the craziness of trying to get dinner ready, or while one of us is on the phone) it breaks our hearts a little bit.
His patience level is pretty much nonexistent now. It's a weird juxtaposition because he's so tough in the way he deals with his treatment. He never complains and always seems to have a smile on his face even when he knows that he's due to have some unpleasantness headed his way (port access etc) but if his iPod touch freezes, or he can't get past a level on his 3DS he is instantly in tears. I find myself telling him at least twice a day to calm down and that whatever he is so worked up over is not a big deal. Yesterday he had one of these episodes right around the same time I was worked up into a pretty big rant that essentially boiled down the phrase "Don't hassle me!" and I realized that it's not just HIS problem.
I've lost a lot of patience too, and my frustration level always seems to be on the high side of normal simmering just under the surface waiting for something to give it that little bit of extra energy it needs break into a full rolling boil. The only difference between me and Aidan is that I have more coping mechanisms in place having been around almost 29 years longer than him. I also have the cognitive ability to objectively look at my behavior and try to find the reason that it's happening.
If Aidan didn't always shrug his shoulders and say "I don't know" when we talk to him about his frustration and how it manifest itself, he could probably answer "Because I have cancer" to the question "Why do you think you get so upset over this little things?" He certainly wouldn't be wrong and I suppose that is the simplest answer for me too when I ask myself why I have such a hard time keeping it together when life decides to start throwing non cancer related curve balls my way. Underneath all that though I think ,for me, it's about fairness.
Aidan's second grade teacher always told the class "fair is where you take your pigs in the summer!" when the kids would whine about whatever injustices occur in a 2nd grade classroom. We certainly recognize that life isn't fair. It's impossible to have a child with cancer and think otherwise. There's no justice to be found watching your bald, eyelashless and eyebrowless son lay in a hospital bed for 5 straight days and receive medication that is designed to poison his cells. Believe me, we get it. Life is most definitely not fair.
At the same though I have an (unrealistic) expectation that because of this incredible burden laid at the feet of our family, the rest of our life outside of our cancer bubble should go relatively smoothly because "aren't we dealing with enough?" So when things start to go wrong and become difficult I find that I just become instantly angry and indignant.
As I was thinking about this last night I was reminded of the iconic scene from "Unforgiven" where Gene Hackman's law man Bill Dagget lays on the floor of the saloon staring up the barrel of a shotgun held by the haggard former killer for hire William Munny. Dagget says "I don't deserve this - To die like this" Munny simply replies "Deserve's got nothing to do with it." I guess it doesn't, but it's a hard thing to accept. I'm trying though - hoping that if I can truly accept that "deserve's got nothing to do with it" I can let go of some of this anger and hopefully be more effective at dealing with life outside of our cancer diagnosis.
I get to go home tomorrow because I'm back to work at the office on Monday. Jamie and Aidan stay until radiation Monday morning and then get to come home. Once home the overwhelming boredom we feel inside the hospital will be replaced with worry as his blood counts steadily drop and we try to avoid another admission due to a fever.
Aidan hasn't had a lot of physical side effects from his treatment at all. Certainly not to the degree that a lot of kids do. He has had a sore throat on occasion and some jaw pain from the chemotherapy but he's never required anything stronger than Tylenol to give him relief. The biggest side effect for him (at least from my perspective) has been emotional. He's become much more physically clingy. We are always happy to hug the boys as much as they want, but it still makes us sad that he needs so much more physical attention these days. We can't help but think it's because deep down he feels really scared or feels unsafe. So when he leans on one of us and hugs us at really inopportune or inappropriate times (like in the craziness of trying to get dinner ready, or while one of us is on the phone) it breaks our hearts a little bit.
His patience level is pretty much nonexistent now. It's a weird juxtaposition because he's so tough in the way he deals with his treatment. He never complains and always seems to have a smile on his face even when he knows that he's due to have some unpleasantness headed his way (port access etc) but if his iPod touch freezes, or he can't get past a level on his 3DS he is instantly in tears. I find myself telling him at least twice a day to calm down and that whatever he is so worked up over is not a big deal. Yesterday he had one of these episodes right around the same time I was worked up into a pretty big rant that essentially boiled down the phrase "Don't hassle me!" and I realized that it's not just HIS problem.
I've lost a lot of patience too, and my frustration level always seems to be on the high side of normal simmering just under the surface waiting for something to give it that little bit of extra energy it needs break into a full rolling boil. The only difference between me and Aidan is that I have more coping mechanisms in place having been around almost 29 years longer than him. I also have the cognitive ability to objectively look at my behavior and try to find the reason that it's happening.
If Aidan didn't always shrug his shoulders and say "I don't know" when we talk to him about his frustration and how it manifest itself, he could probably answer "Because I have cancer" to the question "Why do you think you get so upset over this little things?" He certainly wouldn't be wrong and I suppose that is the simplest answer for me too when I ask myself why I have such a hard time keeping it together when life decides to start throwing non cancer related curve balls my way. Underneath all that though I think ,for me, it's about fairness.
Aidan's second grade teacher always told the class "fair is where you take your pigs in the summer!" when the kids would whine about whatever injustices occur in a 2nd grade classroom. We certainly recognize that life isn't fair. It's impossible to have a child with cancer and think otherwise. There's no justice to be found watching your bald, eyelashless and eyebrowless son lay in a hospital bed for 5 straight days and receive medication that is designed to poison his cells. Believe me, we get it. Life is most definitely not fair.
At the same though I have an (unrealistic) expectation that because of this incredible burden laid at the feet of our family, the rest of our life outside of our cancer bubble should go relatively smoothly because "aren't we dealing with enough?" So when things start to go wrong and become difficult I find that I just become instantly angry and indignant.
As I was thinking about this last night I was reminded of the iconic scene from "Unforgiven" where Gene Hackman's law man Bill Dagget lays on the floor of the saloon staring up the barrel of a shotgun held by the haggard former killer for hire William Munny. Dagget says "I don't deserve this - To die like this" Munny simply replies "Deserve's got nothing to do with it." I guess it doesn't, but it's a hard thing to accept. I'm trying though - hoping that if I can truly accept that "deserve's got nothing to do with it" I can let go of some of this anger and hopefully be more effective at dealing with life outside of our cancer diagnosis.
Saturday, January 12, 2013
Welcome Back!
So let's start with some good news.
The week before Christmas Aidan had a full battery of tests to evaluate how well his treatment has been working so far. He had a PET/CT scan, Lung Scan, Bone Scan and MRI. All of the test results were positive. The bone scan and PET/CT showed no cancer activity. His lung CT was clear (Ewing's sarcoma likes to spread to soft tissue particularly the lungs) and the MRI showed that though there is still abnormality in the bone at his tumor site, it looks much better than it did when we started treatment. His tumor is smaller and all of the "angry tissue" (our oncologist's description) around his tumor site is gone. Realistically we couldn't have gotten better news at this point in his treatment.
The positive scan results made for a very Merry Christmas indeed. Aidan had his last test on the morning of the 21st and we didn't return to the hospital for chemotherapy until Jan 2nd. Since his last dose of Chemo before the scans, was finished on Dec 10th, His counts were really high and he felt great during his time off from treatment. Aside from his bald head, you wouldn't have known there was anything wrong with him at all. We were actually able to function like a normal family again (We were even able to go out to a restaurant for a meal.) It was the first time since this all started in July with the osteomyolotis diagnosis, that we went an entire week without him being poked or accessed or having to do some complicated medicine routine. It was great. Even though it was just a couple of weeks, we adapted immediately and fell back into pretty normal family routines.
All that happiness and normalcy made returning to treatment all the more difficult. But return we did, because, well, we don't have a choice. His treatment calls for 22 more weeks of chemotherapy which is twice as long as "induction" phase we just finished. The induction phase went about as well as we could have hoped, but the thought of almost 6 more months of chemo admissions along with any unexpected emergency visits is pretty daunting.
Along with the chemotherapy, Aidan starts radiation therapy this coming Monday. Five days a week for 5-6 weeks. Now we've heard from multiple sources that Aidan's radiology oncologist is nothing short of brilliant, but our initial consult with the department left us a little cold. Jamie and I need information to help us mentally handle Aidan's treatment. Knowledge is power and we try to obtain as much of it as possible. We ask a lot of questions and always appreciate thorough and detailed answers from our medical professionals The general feeling we got from our initial consult with radiology / oncology was "This is you only local control option so just show up, sit down, and shut up" I'm admittedly painting that with a much harsher brush than it probably deserves and I'm sure that the Dr. didn't mean to come off as dismissive. He probably thought it would be comforting to just tell us not to worry about that and not really answer our questions. Perhaps it's because he's not exclusively a pediatric radiologist / oncologist (he spends the afternoon treating adults at another hospital), but that consult felt very different from what we've become accustomed to when we approach a new experience in our journey.
In the end though our takeaway from the consult is pretty much on the mark, and maybe that's what stings the most. Realistically, right now, radiation is the only option. Surgery would be extremely difficult and risky and should the cancer return in the same location later, the most likely (and sometimes only) option for treatment is surgery. It wouldn't make sense to take that off the table now because at some point it's possible that an experimental and risky surgery could be our best shot.
The Drs. we do trust implicitly here (Dr. Cooper, Dr. Courtney, and Dr. Chuk) have all told us that the radiologist / oncologist Aidan will see is the best, and a genius so, as we've done many times before, we'll put our trust and faith in their advice and recommendation. Everything they've done for us thus far has gotten us closer to an internet picture of Aidan holding up a sign saying "I kicked cancer's ass."
Restarting chemotherapy means that we also get everything that goes along with it, and this week that once again means an unexpected hospital admission for a nuetropenic fever. As Aidan was laying on the couch Thursday, we noticed some redness around his old picc line site. We've been down this road before unfortunately and though he didn't appear to be ill in any way, or even feel fevered, Jamie took his temperature and sure enough it was 101.3. So after an excruciating trip to the ER, here we are, up on 9B (home away from home) just riding it out waiting for his counts to rebound so we can get back home. The infection seemed to clear up almost immediately and the fever broke pretty quickly too. It's just down to his nuetrophils. Until his white blood cells and nuetrophils start to rise, he's staying Given the timing of his fever we're going to be here through the weekend. Our hope is that he'll be ready to go home Monday morning and he can just be discharged to radiology / oncology to get his radiation therapy and then go home for a couple of days before returning for chemo on Wednesday.
We woke up this morning (Saturday) to find that his platelets and hemoglobin levels dropped pretty drastically over night. His platelets have fallen into territory where transfusion is mandatory. He was at 13,000 yesterday and transfusions happen when they drop under 10,000. This morning Aidan had a platelet count of 5,000. The hemoglobin situation is a little murkier. His number of 7.6 is well within the range when a transfusion is called for, but Aidan tends to tolerate lower hemoglobin numbers pretty well. For him and where he's at in his chemotherapy timeline, it's a difficult decision to decide whether to give blood now or wait it out. This is the 10th day after chemo, so his counts could either drop for another day or two, or he could begin the rebound as his bone marrow begins to regenerate those cells with some help from the neulasta shot he got after chemo. Even though he's had a couple of transfusions and not had any problems, there are always risks of adverse reactions so we don't want to transfuse if we don't have to, but we also don't want withhold blood if he really needs it. I spent the morning talking with Jamie and the Drs. here about what we should do and in the end we decided to transfuse red blood cells too. He's currently hooked up to the platelets and the packed red blood cells should follow after.So that's what's been going on medically with us lately, and now I want to switch gears just a little and talk about where we are at emotionally.
It's a hard thing to describe because I'm not sure I even know exactly. Of course we are beyond ecstatic with the scan results. Those results make the LONG road ahead seem much more passable. At the same time though, we're still a long way from the finish line. It seems like we've been doing this "cancer thing" forever and it's only been around 4 months. We're not even half way home and by all accounts the road just gets harder the longer were on it. The effects of the chemo cumulatively pile up. The radiation could also affect his counts, and we could be looking at delays, more unexpected hospitalizations and more frequent and severe side effects etc. We have to be prepared for this portion to be exponentially harder than what we just got through. So while the scan results have us feeling hopeful, we're also feeling hesitant, uncertain, and scared, so we need support now more than ever.
I promised to be honest here so here goes. We will not ask for help aside from the stuff we absolutely have to ask for help with which is making sure Dylan is taken care of when we are in the hospital. It's just not in our nature. I know we shouldn't feel awkward about asking for help, but we do and we won't. We also don't have an answer for anyone that asks if we need anything because when it's framed that way it's essentially the same as us asking for help. Even just writing this feels uncomfortable. If you want to do something to help, don't wait for us to ask, or ask us what we want, just put it into motion. Believe me we appreciate EVERYTHING. We may not have the time or energy to send a personal thank you, but every act of kindness gives us a little more strength.
Right now with the thought of nearly 6 months of chemotherapy and the uncertainty of what lies ahead of us with radiation, we're going to need a lot of strength.
All that happiness and normalcy made returning to treatment all the more difficult. But return we did, because, well, we don't have a choice. His treatment calls for 22 more weeks of chemotherapy which is twice as long as "induction" phase we just finished. The induction phase went about as well as we could have hoped, but the thought of almost 6 more months of chemo admissions along with any unexpected emergency visits is pretty daunting.
Along with the chemotherapy, Aidan starts radiation therapy this coming Monday. Five days a week for 5-6 weeks. Now we've heard from multiple sources that Aidan's radiology oncologist is nothing short of brilliant, but our initial consult with the department left us a little cold. Jamie and I need information to help us mentally handle Aidan's treatment. Knowledge is power and we try to obtain as much of it as possible. We ask a lot of questions and always appreciate thorough and detailed answers from our medical professionals The general feeling we got from our initial consult with radiology / oncology was "This is you only local control option so just show up, sit down, and shut up" I'm admittedly painting that with a much harsher brush than it probably deserves and I'm sure that the Dr. didn't mean to come off as dismissive. He probably thought it would be comforting to just tell us not to worry about that and not really answer our questions. Perhaps it's because he's not exclusively a pediatric radiologist / oncologist (he spends the afternoon treating adults at another hospital), but that consult felt very different from what we've become accustomed to when we approach a new experience in our journey.
In the end though our takeaway from the consult is pretty much on the mark, and maybe that's what stings the most. Realistically, right now, radiation is the only option. Surgery would be extremely difficult and risky and should the cancer return in the same location later, the most likely (and sometimes only) option for treatment is surgery. It wouldn't make sense to take that off the table now because at some point it's possible that an experimental and risky surgery could be our best shot.
The Drs. we do trust implicitly here (Dr. Cooper, Dr. Courtney, and Dr. Chuk) have all told us that the radiologist / oncologist Aidan will see is the best, and a genius so, as we've done many times before, we'll put our trust and faith in their advice and recommendation. Everything they've done for us thus far has gotten us closer to an internet picture of Aidan holding up a sign saying "I kicked cancer's ass."
Restarting chemotherapy means that we also get everything that goes along with it, and this week that once again means an unexpected hospital admission for a nuetropenic fever. As Aidan was laying on the couch Thursday, we noticed some redness around his old picc line site. We've been down this road before unfortunately and though he didn't appear to be ill in any way, or even feel fevered, Jamie took his temperature and sure enough it was 101.3. So after an excruciating trip to the ER, here we are, up on 9B (home away from home) just riding it out waiting for his counts to rebound so we can get back home. The infection seemed to clear up almost immediately and the fever broke pretty quickly too. It's just down to his nuetrophils. Until his white blood cells and nuetrophils start to rise, he's staying Given the timing of his fever we're going to be here through the weekend. Our hope is that he'll be ready to go home Monday morning and he can just be discharged to radiology / oncology to get his radiation therapy and then go home for a couple of days before returning for chemo on Wednesday.
We woke up this morning (Saturday) to find that his platelets and hemoglobin levels dropped pretty drastically over night. His platelets have fallen into territory where transfusion is mandatory. He was at 13,000 yesterday and transfusions happen when they drop under 10,000. This morning Aidan had a platelet count of 5,000. The hemoglobin situation is a little murkier. His number of 7.6 is well within the range when a transfusion is called for, but Aidan tends to tolerate lower hemoglobin numbers pretty well. For him and where he's at in his chemotherapy timeline, it's a difficult decision to decide whether to give blood now or wait it out. This is the 10th day after chemo, so his counts could either drop for another day or two, or he could begin the rebound as his bone marrow begins to regenerate those cells with some help from the neulasta shot he got after chemo. Even though he's had a couple of transfusions and not had any problems, there are always risks of adverse reactions so we don't want to transfuse if we don't have to, but we also don't want withhold blood if he really needs it. I spent the morning talking with Jamie and the Drs. here about what we should do and in the end we decided to transfuse red blood cells too. He's currently hooked up to the platelets and the packed red blood cells should follow after.So that's what's been going on medically with us lately, and now I want to switch gears just a little and talk about where we are at emotionally.
It's a hard thing to describe because I'm not sure I even know exactly. Of course we are beyond ecstatic with the scan results. Those results make the LONG road ahead seem much more passable. At the same time though, we're still a long way from the finish line. It seems like we've been doing this "cancer thing" forever and it's only been around 4 months. We're not even half way home and by all accounts the road just gets harder the longer were on it. The effects of the chemo cumulatively pile up. The radiation could also affect his counts, and we could be looking at delays, more unexpected hospitalizations and more frequent and severe side effects etc. We have to be prepared for this portion to be exponentially harder than what we just got through. So while the scan results have us feeling hopeful, we're also feeling hesitant, uncertain, and scared, so we need support now more than ever.
I promised to be honest here so here goes. We will not ask for help aside from the stuff we absolutely have to ask for help with which is making sure Dylan is taken care of when we are in the hospital. It's just not in our nature. I know we shouldn't feel awkward about asking for help, but we do and we won't. We also don't have an answer for anyone that asks if we need anything because when it's framed that way it's essentially the same as us asking for help. Even just writing this feels uncomfortable. If you want to do something to help, don't wait for us to ask, or ask us what we want, just put it into motion. Believe me we appreciate EVERYTHING. We may not have the time or energy to send a personal thank you, but every act of kindness gives us a little more strength.
Right now with the thought of nearly 6 months of chemotherapy and the uncertainty of what lies ahead of us with radiation, we're going to need a lot of strength.
Saturday, December 1, 2012
House Arrest, S.A.D., Songs, and Spaghetti Dinners
To say it's been an eventful couple of weeks since the last blog update would be a understatement of epic proportions. Once again the seed of an idea would come to me and I'd start to think about it in terms of a blog post. Just when it was starting to come together and I was feeling ready to sit down and bang on some keys the road we're traveling would take an hard unmarked turn and all the little boxes of our life that we were just starting to get organized and stacked neatly would fly across the car and break open - their contents spilling all over the upholstered seats (why didn't we just pay for the leather?) We've spent so much time picking up the pieces that it's hard to reflect on any specific event in enough detail to properly write about it. Things are just happening so fast.
I've not wanted this blog to just be a recap of what is going on in our lives, full of medical terms and details. I feel like most everyone gets that on Facebook from either Jamie or I and while it's fine in that form, I think it would become tiresome here. I've always tried to find some theme in what is happening in our lives as we deal with cancer and weave our experiences around that theme so that it remains interesting and thoughtful. Even though I'm mainly writing this for myself, I am aware that, though the audience is small, I'm not the only one reading these entries. I try to make it as enjoyable / insightful as I can for everyone who takes the time to read the blog.
I've also purposely avoided shorter posts. I'm not sure why exactly, but I have never felt like I should be able to get away with just publishing a paragraph. I realize it's completely ridiculous. Hemingway is one of my favorite writers because of how brief and concise he was. He could write paragraphs that would seem unremarkable. The words would be simple. The sentences wouldn't contain a lot of adjectives and adverbs or flowery language, yet his short stories, in particular (and some of them are incredibly short), remain some of the most powerful writing I've ever read. I have tried to adopt the Hemingway principle in my own writing and write using only the words necessary. I'm not sure why I haven't extended those guidelines to the length of entries. I'm realizing that I need to get over this hangup about publishing only a paragraph or two; our life is too chaotic right now. So in the future I may be updating more frequently though the entries may be more brief.
I'm going to try and embrace the idea here in this single blog entry and spend the rest of the time briefly covering the events of the last couple of weeks and some of the ideas I've had surrounding them. They all probably deserve a more thorough treatment, but I'm learning that when you are living with cancer, you just have to do the best that you can, be okay with that, and forgive yourself the rest.
In the last entry I spoke glowingly about Jamie and I plan to do a little more of that in this entry. She's an amazing wife and a fantastic mother and I couldn't love her anymore than I do, but there's more than just love to our relationship. I genuinely LIKE my wife. She is my best friend and that is by no means obligatory. She truly is my favorite person and I love spending time with her - going out with her and doing fun things and now it seems like we just can't.
When we got our diagnosis, we knew that our lives were going to change dramatically. We knew and accepted we were giving up the weekend getaways and road trips. We accepted that we were probably going to have to give up our weekly kid free Saturday nights and Sundays. We didn't expect that we'd have to package up our entire social life into a canister and bury it in the backyard next to a little marker that says "do not open until Aug 2013."
We've tried on three occasions to do something fun together and all three times have ended with us at Children's hospital ER. The latest incident occurred the day after the Zumbathon. Aidan was feeling great and looking pretty good and really wanting to spend some time at grandma's house. So we planned a Dylan day (lunch out and a viewing of "Wreck It Ralph") followed by an evening out participating in the yearly scavenger hunt we've done with friends the last couple of years. Dylan's day was fun and when we dropped him off at Grandma's house Aidan was feeling fine. We met up with our friends and got ready to try and spend an evening doing something other than thinking and talking about cancer. We didn't even get to the starting line. We got a call that Aidan was fevered. Jamie placed a call to the oncology hotline. He had to go back to the hospital.
It was supposed to be a simple trip. Get his port accessed, draw blood and get his counts. Get a dose of antibiotic. An ANC of 500 or better meant discharge. Under 500 meant hospital admission. We went into the ER around 7 PM, but somehow it took until 4 AM to get admitted to the hospital.
The two other times we tried to do something fun landed Aidan in the hospital too. Maybe we are unknowingly and coincidentally picking bad times to try to spend time together, but it really is starting to feel like we're cursed. It feels like we're causing his hospitalizations by trying to get away from his diagnosis for even just a couple of hours. We haven't had a conversation since late September that wasn't about cancer, and as depressing as that is, we've learned to accept it. Is it too much to ask to be able to do something fun once a month? It sure seems that way. I miss my friend.
A few weeks ago we turned the clocks to end daylight savings time. We've lost more and more daylight steadily since then. Even though it's been fairly mild weather wise, this is the dead of winter for me. It's dark in the morning when I leave for work and dark at night when I head home. Every year I struggle with Seasonal Affective Disorder. I get cranky, tired, angry, and generally just feel apathetic. Jamie got me an artificial sunlight machine a few years ago, but most times I feel too apathetic to turn it on.
I didn't give S.A.D. a whole lot of thought this year, and if you asked me if I thought it would affect me, I probably would have said "Aidan has cancer, how much worse could shorter days and lack of sunlight really make me feel?" As it turns out the answer is "quite a bit."
Aidan's diagnosis has already given me most of the symptoms I usually experience from S.A.D. but lately they just feel like they have been amplified and much harder to shake. A month or so ago I might feel really sad for a couple of hours, now the sadness stretches to a day or more. I feel more angry now than I did before. My apathy has increased as well and I find myself struggling to be productive and take care of things that need my attention because I truly couldn't give a damn about them.
I am even finding it hard to make myself take my daily runs lately despite how much better I feel after I run. For much of this year the only thing that occasionally felt tedious about the running streak was just finding the time in the day around our busy lives. Excepting the day we received our diagnosis and the day after, The actual act of running has always been a pleasure. There are just 31 days left in the year. I've run on every single one of the previous 335 and already surpassed my initial goal of 1000 miles. I should be excited to be in the home stretch of my running resolution. Instead it's become a real struggle lately. During the week, work and my general apathy keep me at my desk when I should be outside running and then in the evening when I force myself to keep the streak alive and run, it's either a depressing run the dark and cold, or an equally loathsome run on the treadmill.
S.A.D. really hit me the hardest last Sunday. That was the day our community threw our family the biggest and most impressive Spaghetti Dinner fundraiser our town has ever seen. The event was held at our local VFD social hall. I'm not sure what the occupancy limit there is, but the place was packed from 11am - 4pm. It seemed as if the entire community came out to support Aidan. Volunteers cooked, and served. Local businesses donated baskets to the Chinese Auction, and volunteered their services. The food was amazing and the event was a huge success. Jamie and I received much support and many hugs from friends and strangers alike. We owe thanks to all those who volunteered, and all those who bought tickets and came to the event.
When the event had ended I should have been feeling positive and basking in the glow of the amazing outpouring of support we received, but I wasn't. The thing about S.A.D. with me is that it makes me focus on the negative things that happen and the feelings that arise from those events even when the positives far outweigh them. So despite all the love and support that was showered on our family, I found myself unable to shake the feeling of sadness and sense of impending doom that arose from meeting an extremely nice gentleman who came to the dinner to offer his support. His son had just recently passed away from Ewing's and even though I know he was trying to be helpful we could still hear pain, grief and bitterness in his voice as he told us about his son.
I've not wanted this blog to just be a recap of what is going on in our lives, full of medical terms and details. I feel like most everyone gets that on Facebook from either Jamie or I and while it's fine in that form, I think it would become tiresome here. I've always tried to find some theme in what is happening in our lives as we deal with cancer and weave our experiences around that theme so that it remains interesting and thoughtful. Even though I'm mainly writing this for myself, I am aware that, though the audience is small, I'm not the only one reading these entries. I try to make it as enjoyable / insightful as I can for everyone who takes the time to read the blog.
I've also purposely avoided shorter posts. I'm not sure why exactly, but I have never felt like I should be able to get away with just publishing a paragraph. I realize it's completely ridiculous. Hemingway is one of my favorite writers because of how brief and concise he was. He could write paragraphs that would seem unremarkable. The words would be simple. The sentences wouldn't contain a lot of adjectives and adverbs or flowery language, yet his short stories, in particular (and some of them are incredibly short), remain some of the most powerful writing I've ever read. I have tried to adopt the Hemingway principle in my own writing and write using only the words necessary. I'm not sure why I haven't extended those guidelines to the length of entries. I'm realizing that I need to get over this hangup about publishing only a paragraph or two; our life is too chaotic right now. So in the future I may be updating more frequently though the entries may be more brief.
I'm going to try and embrace the idea here in this single blog entry and spend the rest of the time briefly covering the events of the last couple of weeks and some of the ideas I've had surrounding them. They all probably deserve a more thorough treatment, but I'm learning that when you are living with cancer, you just have to do the best that you can, be okay with that, and forgive yourself the rest.
In the last entry I spoke glowingly about Jamie and I plan to do a little more of that in this entry. She's an amazing wife and a fantastic mother and I couldn't love her anymore than I do, but there's more than just love to our relationship. I genuinely LIKE my wife. She is my best friend and that is by no means obligatory. She truly is my favorite person and I love spending time with her - going out with her and doing fun things and now it seems like we just can't.
When we got our diagnosis, we knew that our lives were going to change dramatically. We knew and accepted we were giving up the weekend getaways and road trips. We accepted that we were probably going to have to give up our weekly kid free Saturday nights and Sundays. We didn't expect that we'd have to package up our entire social life into a canister and bury it in the backyard next to a little marker that says "do not open until Aug 2013."
We've tried on three occasions to do something fun together and all three times have ended with us at Children's hospital ER. The latest incident occurred the day after the Zumbathon. Aidan was feeling great and looking pretty good and really wanting to spend some time at grandma's house. So we planned a Dylan day (lunch out and a viewing of "Wreck It Ralph") followed by an evening out participating in the yearly scavenger hunt we've done with friends the last couple of years. Dylan's day was fun and when we dropped him off at Grandma's house Aidan was feeling fine. We met up with our friends and got ready to try and spend an evening doing something other than thinking and talking about cancer. We didn't even get to the starting line. We got a call that Aidan was fevered. Jamie placed a call to the oncology hotline. He had to go back to the hospital.
It was supposed to be a simple trip. Get his port accessed, draw blood and get his counts. Get a dose of antibiotic. An ANC of 500 or better meant discharge. Under 500 meant hospital admission. We went into the ER around 7 PM, but somehow it took until 4 AM to get admitted to the hospital.
The two other times we tried to do something fun landed Aidan in the hospital too. Maybe we are unknowingly and coincidentally picking bad times to try to spend time together, but it really is starting to feel like we're cursed. It feels like we're causing his hospitalizations by trying to get away from his diagnosis for even just a couple of hours. We haven't had a conversation since late September that wasn't about cancer, and as depressing as that is, we've learned to accept it. Is it too much to ask to be able to do something fun once a month? It sure seems that way. I miss my friend.
A few weeks ago we turned the clocks to end daylight savings time. We've lost more and more daylight steadily since then. Even though it's been fairly mild weather wise, this is the dead of winter for me. It's dark in the morning when I leave for work and dark at night when I head home. Every year I struggle with Seasonal Affective Disorder. I get cranky, tired, angry, and generally just feel apathetic. Jamie got me an artificial sunlight machine a few years ago, but most times I feel too apathetic to turn it on.
I didn't give S.A.D. a whole lot of thought this year, and if you asked me if I thought it would affect me, I probably would have said "Aidan has cancer, how much worse could shorter days and lack of sunlight really make me feel?" As it turns out the answer is "quite a bit."
Aidan's diagnosis has already given me most of the symptoms I usually experience from S.A.D. but lately they just feel like they have been amplified and much harder to shake. A month or so ago I might feel really sad for a couple of hours, now the sadness stretches to a day or more. I feel more angry now than I did before. My apathy has increased as well and I find myself struggling to be productive and take care of things that need my attention because I truly couldn't give a damn about them.
I am even finding it hard to make myself take my daily runs lately despite how much better I feel after I run. For much of this year the only thing that occasionally felt tedious about the running streak was just finding the time in the day around our busy lives. Excepting the day we received our diagnosis and the day after, The actual act of running has always been a pleasure. There are just 31 days left in the year. I've run on every single one of the previous 335 and already surpassed my initial goal of 1000 miles. I should be excited to be in the home stretch of my running resolution. Instead it's become a real struggle lately. During the week, work and my general apathy keep me at my desk when I should be outside running and then in the evening when I force myself to keep the streak alive and run, it's either a depressing run the dark and cold, or an equally loathsome run on the treadmill.
S.A.D. really hit me the hardest last Sunday. That was the day our community threw our family the biggest and most impressive Spaghetti Dinner fundraiser our town has ever seen. The event was held at our local VFD social hall. I'm not sure what the occupancy limit there is, but the place was packed from 11am - 4pm. It seemed as if the entire community came out to support Aidan. Volunteers cooked, and served. Local businesses donated baskets to the Chinese Auction, and volunteered their services. The food was amazing and the event was a huge success. Jamie and I received much support and many hugs from friends and strangers alike. We owe thanks to all those who volunteered, and all those who bought tickets and came to the event.
When the event had ended I should have been feeling positive and basking in the glow of the amazing outpouring of support we received, but I wasn't. The thing about S.A.D. with me is that it makes me focus on the negative things that happen and the feelings that arise from those events even when the positives far outweigh them. So despite all the love and support that was showered on our family, I found myself unable to shake the feeling of sadness and sense of impending doom that arose from meeting an extremely nice gentleman who came to the dinner to offer his support. His son had just recently passed away from Ewing's and even though I know he was trying to be helpful we could still hear pain, grief and bitterness in his voice as he told us about his son.
We know that everyone's journey with cancer is different. Even people with the same diagnosis have entirely different cases. This man's son contracted Ewing's in the worst possible spot (the pelvis) at the worst possible time (as an adult) and Aidan's case is nothing like his but despite all that I found myself feeling sick to my stomach and incredibly sad. People tell me how strong I am, but the truth is that I have to work really hard to stay positive and push away the dark and painful thoughts that try to consume me. Meeting that man was just another reminder that it's possible that our family might not make it through this battle in one piece. All those dark thoughts came rushing back.
I also started feeling hurt and disappointed that despite the incredible turnout for the event many of our closest friends were unable to make it. When I expressed these feelings to Jamie she not only validated me, but confided that she was feeling the same way. As I mentioned earlier, Aidan's diagnosis has put us out on an island - isolated and unable to get out to see our friends or have any fun. We had hoped that between the Spaghetti dinner the Zumbathon we would get to see them all for a least a minute or two but it didn't work out and we feel like we are slowly drifting away. We're afraid that when when we're done with this journey everyone will have moved on from us and we'll be alone.
It took me two days to get out of the funk I was in. I've gotten outside to run during the day the last few days and getting some sunlight on my face has made a huge difference in my outlook. I'm going to have to force myself to get out there and run and start using my S.A.D. light or it's going to be a really long winter.
I'll end with some happy news. Two weeks ago, we started a project called Songs For Aidan. The idea was to try and get musicians and singer / songwriters to record a youtube video of them playing a song just for Aidan and hopefully include a personal get well message to him. I created a youtube channel (www.youtube.com/user/SongsForAidan) and a little web page explaining the project (http://live-the-proof.com/songs-for-aidan.html) and we started reaching out to our favorite indie artists in hopes that they would not only contribute but spread the word among their circle of friends.
The response so far has been nothing short of inspiring. I'm getting at least one email every day about participating. We've gotten a ton of great commitments and already have one video from singer songwriter Jane Fallon which is absolutely perfect
please help us spread the word about this project. We really want to fill that channel up with songs for Aidan so that when he is feeling down he can pull up the youtube channel on the computer, feel really special and hopefully find a reason or two to smile.
please help us spread the word about this project. We really want to fill that channel up with songs for Aidan so that when he is feeling down he can pull up the youtube channel on the computer, feel really special and hopefully find a reason or two to smile.
Wednesday, November 21, 2012
The passing moment gone
There are moments that we don't ever want to let go of, and there are moments that we wish we could erase from our memory. Our life as parents of this wonderful boy has been filled with a lot of both of those kind of moments.
I remember holding him in the delivery room not wanting to allow the nurses to take him from my arms because I was afraid I'd never get him back. I also remember hearing the doctors tell me that his little baby heart was enlarged, his lungs hazy and there was some sort of mass in his abdomen, I remember feeling terrified that he wouldn't make it through the night. A couple of weeks later, I remember watching him sleeping in a car seat waiting for discharge. He was so tiny and fragile, but so content.
A couple of years later after he had experience a terrifying febrile seizure that the doctors couldn't seem to control, I remember hearing one of the ER nurses whisper to the doctor "He's not breathing" right before they ushered us out of the room, shut the door and drew the curtains. Later I remember sitting in the audience of his preschool graduation tearing up over how adorable he looked in an over-sized dress shirt he wore backwards (to simulate a gown) and little graduation cap.
On Sept 1, 2012 Jamie and I celebrated 10 years of marriage. We have had a wonderful marriage. I couldn't ask for a better wife, friend or partner. She has been and continues to be whatever I need, when I need it. I could not do this with anyone else. We've been through a lot in 10 years of marriage so we decided to have a little celebration and renew our vows to each other and our family. We had a little ceremony with the boys, our wonderful friends roasted a hog for us, and we had our favorite artist Jim Boggia come across the state to play a private concert just for our family and friends. It was a magical evening that we wanted to never end, but no matter how hard we tried we couldn't hold onto it.
On Sept 21, 2012 we heard the words "bone cancer" and were forever changed. No matter how much we want to erase that moment, it is with us every single minute of every single day. It defines our family. Everything we do is informed by those words spoken to Jamie by Dr. Decker "Mrs. Knox, Aidan has bone cancer." We just cannot escape them. Sometimes when I lay down to sleep at night they assault me with tremendous force. I imagine him not making it. I imagine him critically ill and in hospice care. I imagine trying to make it through a memorial service. Thankfully those moments pass relatively quickly. Sometimes I have to get up and do something else (surf on the computer, turn on the TV) for a few minutes and then try again to go back to sleep.
Even now though, we still have more good moments than bad and for that I am thankful. I just wish we could find a way to hold onto the good moments and make them last. Last Friday was that kind of night.
November 16th was the Zumbathon and Chinese Auction for Aidan, and even though I want to write about it, I'm a little hesitant. I'm afraid that I don't have the words to adequately describe what an amazing night it was, how loved we felt, and how grateful we were to not just be part of such an amazing event, but to be the reason for it.
The event took place at the 84 fitness center in the gymnasium. Jamie and I have been members of the fitness center for a long time. We've seen a lot of events hosted there over the years (blood drives, our kids birthday parties, other charity events, etc) and have never seen so many people inside that building. The registration line seemed like it would never end, and then when it finally appeared to dwindle, another wave of participants would show up and the line would once again stretch out the door.
Inside the building there were over 90 amazing baskets up for Chinese auction which were put together by my co-worker Cindy. She spent hours tirelessly working on the baskets and did an amazing job. The baskets were on display and open for bidding among 84 employees the week leading up to the Zumbathon. When the baskets finally made it to the fitness center and the auction opened to those buying tickets for the event, many of the "bid bags" were already nearly overflowing with tickets. There was good reason for that. I'm not a Chinese auction connoisseur, but I've seen a few at the races and events I've attended over the years. This Chinese auction was like nothing I had ever seen. Every single basket was something awesome. There were signed Steelers pictures, signed penguins pucks, a gift card tree, really cool beer and snack baskets, a night out at the symphony complete with dinner for two at Braddocks brassiere, passes to the Zoo attached to the biggest teddy bear anyone has ever seen. (I'm not exaggerating that bear was almost 5 feet tall.) Those are just the baskets that immediately come to mind. The auction was packed with fantastic items including two "silent auction" signed Penguin Jerseys (Mario Lemieux, and another signed by current players including Sidney Crosby.) The Auction was the talk of the office all week leading up to the event and all Friday night people were marveling at all the baskets.
The zumbathon part of the event was organized by our good friend Kate. If I had to describe Kate in one word it would be "inevitable." That may not seem like it makes sense, but to me it seems like the perfect word. When you hear that Kate is attempting a new project or venture, you don't question whether it will be a success, because it is inevitable that it will be. I don't know that we have ever known a more tenacious, determined goal oriented person. Since we've known her we have watched her organize successful charity events, her class reunion, and build her zumba class from teaching at a few places during the week to a successful local fitness studio with a full class schedule. when Jamie and I received a message from Kate a few days after our diagnosis telling us that she was going to organize the biggest and most successful zumbathon our area has ever seen, we didn't doubt it for a second. Last Friday night Kate delivered on that promise.
We don't have an accurate count of how many people attended, but I know that the entire gymnasium was full of people dancing, laughing and having a great time. Kate had an entire lineup of fantastic instructors who volunteered their time for the cause. I don't know a a lot about Zumba, but everyone we talked to said the instructors were top notch and it wa simply the best and most fun zumbathon they had been to. Music and photobooth fun was provided by our friends Jason and Janice of Hinkledire entertainment. Tickets, T-shirt and wristband sales were handled by Melissa, Maria, and Luanne. Everyone involved did a fantastic job making sure everything went smoothly throughout the night.
During the event Jamie and I floated all around the gym. We spent most of the event being embraced by friends, family and even strangers who had heard of Aidan's story. The sheer number of people in attendance was overwhelming, but what was even more incredible was that we knew most of the people in attendance personally. And we know that they would have been in attendance no matter what the event was (as I'm sure we'll find out this Sunday at the spaghetti dinner) I saw and hugged people I haven't seen in many years. We had friends drive over 4 hours to be there in support of our family. From the very moment we heard those dreaded words the outpouring of love and support our family has received has been remarkable. Friday night was just another example of that.
Near the end of the evening Jamie and I took the microphone to thank everyone and say a few words. I hope that we did a good job. It's extremely difficult to put the gratitude that we feel on paper and near impossible to do it in an impromptu speech. There aren't enough synonyms for "thankful" to adequately express just how much it meant to us to see so many wonderful people come together for Aidan and our family.
Even though we wanted to hold onto that night forever things were coming to a close and our youngest son Dylan took the microphone to let everyone know it was just about time to pack it up as he proudly exclaimed "I want to go home!" With that, Kate took the stage again to lead the cool down to "Live The Proof" I took this video on my phone so that I could hold onto that moment and also to show Jim just what and amazing impact his song was having on not just us personally, but all those people who were with us along this journey.
I remember holding him in the delivery room not wanting to allow the nurses to take him from my arms because I was afraid I'd never get him back. I also remember hearing the doctors tell me that his little baby heart was enlarged, his lungs hazy and there was some sort of mass in his abdomen, I remember feeling terrified that he wouldn't make it through the night. A couple of weeks later, I remember watching him sleeping in a car seat waiting for discharge. He was so tiny and fragile, but so content.
A couple of years later after he had experience a terrifying febrile seizure that the doctors couldn't seem to control, I remember hearing one of the ER nurses whisper to the doctor "He's not breathing" right before they ushered us out of the room, shut the door and drew the curtains. Later I remember sitting in the audience of his preschool graduation tearing up over how adorable he looked in an over-sized dress shirt he wore backwards (to simulate a gown) and little graduation cap.
On Sept 1, 2012 Jamie and I celebrated 10 years of marriage. We have had a wonderful marriage. I couldn't ask for a better wife, friend or partner. She has been and continues to be whatever I need, when I need it. I could not do this with anyone else. We've been through a lot in 10 years of marriage so we decided to have a little celebration and renew our vows to each other and our family. We had a little ceremony with the boys, our wonderful friends roasted a hog for us, and we had our favorite artist Jim Boggia come across the state to play a private concert just for our family and friends. It was a magical evening that we wanted to never end, but no matter how hard we tried we couldn't hold onto it.
On Sept 21, 2012 we heard the words "bone cancer" and were forever changed. No matter how much we want to erase that moment, it is with us every single minute of every single day. It defines our family. Everything we do is informed by those words spoken to Jamie by Dr. Decker "Mrs. Knox, Aidan has bone cancer." We just cannot escape them. Sometimes when I lay down to sleep at night they assault me with tremendous force. I imagine him not making it. I imagine him critically ill and in hospice care. I imagine trying to make it through a memorial service. Thankfully those moments pass relatively quickly. Sometimes I have to get up and do something else (surf on the computer, turn on the TV) for a few minutes and then try again to go back to sleep.
Even now though, we still have more good moments than bad and for that I am thankful. I just wish we could find a way to hold onto the good moments and make them last. Last Friday was that kind of night.
November 16th was the Zumbathon and Chinese Auction for Aidan, and even though I want to write about it, I'm a little hesitant. I'm afraid that I don't have the words to adequately describe what an amazing night it was, how loved we felt, and how grateful we were to not just be part of such an amazing event, but to be the reason for it.
The event took place at the 84 fitness center in the gymnasium. Jamie and I have been members of the fitness center for a long time. We've seen a lot of events hosted there over the years (blood drives, our kids birthday parties, other charity events, etc) and have never seen so many people inside that building. The registration line seemed like it would never end, and then when it finally appeared to dwindle, another wave of participants would show up and the line would once again stretch out the door.
Inside the building there were over 90 amazing baskets up for Chinese auction which were put together by my co-worker Cindy. She spent hours tirelessly working on the baskets and did an amazing job. The baskets were on display and open for bidding among 84 employees the week leading up to the Zumbathon. When the baskets finally made it to the fitness center and the auction opened to those buying tickets for the event, many of the "bid bags" were already nearly overflowing with tickets. There was good reason for that. I'm not a Chinese auction connoisseur, but I've seen a few at the races and events I've attended over the years. This Chinese auction was like nothing I had ever seen. Every single basket was something awesome. There were signed Steelers pictures, signed penguins pucks, a gift card tree, really cool beer and snack baskets, a night out at the symphony complete with dinner for two at Braddocks brassiere, passes to the Zoo attached to the biggest teddy bear anyone has ever seen. (I'm not exaggerating that bear was almost 5 feet tall.) Those are just the baskets that immediately come to mind. The auction was packed with fantastic items including two "silent auction" signed Penguin Jerseys (Mario Lemieux, and another signed by current players including Sidney Crosby.) The Auction was the talk of the office all week leading up to the event and all Friday night people were marveling at all the baskets.
The zumbathon part of the event was organized by our good friend Kate. If I had to describe Kate in one word it would be "inevitable." That may not seem like it makes sense, but to me it seems like the perfect word. When you hear that Kate is attempting a new project or venture, you don't question whether it will be a success, because it is inevitable that it will be. I don't know that we have ever known a more tenacious, determined goal oriented person. Since we've known her we have watched her organize successful charity events, her class reunion, and build her zumba class from teaching at a few places during the week to a successful local fitness studio with a full class schedule. when Jamie and I received a message from Kate a few days after our diagnosis telling us that she was going to organize the biggest and most successful zumbathon our area has ever seen, we didn't doubt it for a second. Last Friday night Kate delivered on that promise.
We don't have an accurate count of how many people attended, but I know that the entire gymnasium was full of people dancing, laughing and having a great time. Kate had an entire lineup of fantastic instructors who volunteered their time for the cause. I don't know a a lot about Zumba, but everyone we talked to said the instructors were top notch and it wa simply the best and most fun zumbathon they had been to. Music and photobooth fun was provided by our friends Jason and Janice of Hinkledire entertainment. Tickets, T-shirt and wristband sales were handled by Melissa, Maria, and Luanne. Everyone involved did a fantastic job making sure everything went smoothly throughout the night.
During the event Jamie and I floated all around the gym. We spent most of the event being embraced by friends, family and even strangers who had heard of Aidan's story. The sheer number of people in attendance was overwhelming, but what was even more incredible was that we knew most of the people in attendance personally. And we know that they would have been in attendance no matter what the event was (as I'm sure we'll find out this Sunday at the spaghetti dinner) I saw and hugged people I haven't seen in many years. We had friends drive over 4 hours to be there in support of our family. From the very moment we heard those dreaded words the outpouring of love and support our family has received has been remarkable. Friday night was just another example of that.
Near the end of the evening Jamie and I took the microphone to thank everyone and say a few words. I hope that we did a good job. It's extremely difficult to put the gratitude that we feel on paper and near impossible to do it in an impromptu speech. There aren't enough synonyms for "thankful" to adequately express just how much it meant to us to see so many wonderful people come together for Aidan and our family.
Even though we wanted to hold onto that night forever things were coming to a close and our youngest son Dylan took the microphone to let everyone know it was just about time to pack it up as he proudly exclaimed "I want to go home!" With that, Kate took the stage again to lead the cool down to "Live The Proof" I took this video on my phone so that I could hold onto that moment and also to show Jim just what and amazing impact his song was having on not just us personally, but all those people who were with us along this journey.
With the cool down finished, Cindy called the winners of the auction baskets. More hugs and thanks were given. Equipment and tables were torn down and packed up. The night was over. The moment had passed. But we will never forget all the hard work done by so many to make the zumbathon and auction a success. Nor we will forget how loved we felt by all those who attended to support our family. It was truly a magical night.
Friday, November 9, 2012
The Roller Coaster
It's been a while since I last updated the blog. It's not been for lack of effort. At least three times I have started drafts of entries, putting a few hundred words down only to have circumstances completely change before the entries could be proofread let alone published. We've been on an emotional roller coaster of epic proportions recently.
On the medical front everything has been going pretty much as expected. Aidan has been doing well and tolerating the chemotherapy with limited side effects. His counts have fallen and risen and fallen again, but he's generally felt decent throughout the process.
Monday night Aidan's hemoglobin levels had fallen well into the critical range and we had to get ourselves to the Clinic bright and early Tuesday morning for a blood transfusion. We were sufficiently scared having never gone through that before, but it couldn't have gone smoother. We were there quite a while as two bags of packed red blood cells dripped into his picc line, but The effects were almost immediate. Within an hour or so color had returned to his cheeks and by the time both units of blood had infused he felt fantastic and looked healthier than he had in weeks.
We were worried that this unexpected transfusion would delay our scheduled inpatient stay for 5 straight days of chemotherapy, but his ANC and platelet levels were both very good so there was no need to go off schedule.
Aidan came back to the hospital Wednesday into the same day surgery department and had his picc line removed, mediport installed, and his first of five doses of Chemotherapy. He's pretty sore today and having trouble moving around, getting in and out of bed etc. but otherwise is none the worse for wear. He's actually been declining pain medications so it's either not all that bad or he's starting to toughen up a bit. Inside our little cancer bubble we are doing pretty good.
It's everything outside his diagnosis and treatment that we are struggling to manage. Dealing with Aidan's diagnosis and treatment is pretty much a full time job. Even discounting all the logistics and case management that Jamie has to do to keep his appointments, medications, schooling, nurse visits, we have to monitor him closely to stay on top of possible side effects of his treatment to make sure his symptoms aren't indicative of something worse than just "to be expected" side effects. We have to work at keeping his spirits up as best we can. When our world outside of Aidan's diagnosis chugs along quietly as if on auto pilot, we can more or less manage it all effectively. This hasn't been the case the last several weeks.
I have been busier at work than I have been in a really long time and I can't seem to get myself ahead. Just when it appears that I am getting a firm grasp on everything, 3 more projects land in my lap and I'm immediately behind again. I now have server upgrade projects that are going to require travel and I honestly have no idea how I'm going to pull that off with Aidan's schedule of hospital stays and the prospect of leaving Jamie by herself for a few days at a time. I am definitely thankful to not only have a job, but work for a company that has been so accommodating with me in the face of this diagnosis and supportive of Aidan and his journey, but it doesn't change the fact that I've felt like I'm just barely able to tread water at work the last few weeks.
Jamie also is doing her best to stay ahead of her work as well, but the schedule of treatments and hospitalizations as well as being home with two boys (one who has cancer and another who you can tell feels a bit slighted with his brother receiving so much attention) and just trying to keep our household running make it difficult to find time to sit down and work on photos. I honestly don't know how she does it at all, but she is still somehow managing to turn out beautiful work albeit a bit slower than she normally does. Thankfully her clients have been understanding of our situation, but I know it still bothers Jamie that she is not able to get things done for them as quickly as she is used to and expected to.
Lots of other seemingly small things have gone wrong or at the very least were more complicated to deal with than they should have been. Normally when that happens it's just a minor irritant, something that just slightly derails an otherwise fine day. We are already constantly on edge though so when the car breaks down and requires minor service, for example, it seems completely impossible to deal with.
Then our family hit a breaking point. We thought for a couple of days that we might lose Champ. He fell ill and was vomiting all over the house. Our vet (who won't be our vet much longer) recommended we withhold all food and water for 18 hours but gave him an otherwise clean bill of health upon exam. We followed Drs orders but as soon as he was eating again almost a full day later he was still throwing up. When he tried to rest on the couch his entire body shivered as if he were out in the cold without the sweaters Jamie sometimes makes him wear.
Jamie took him to the emergency vet who did an X-ray and suspected he had some sort of obstruction in his GI tract. The options given were to be transferred to a different vet hospital that had more advanced equipment (ultrasound capabilities) do exploratory surgery on the spot, or euthanize him.
We've only had Champ for around 11 months but he truly is the glue holding our family together right now. Knowingly or unknowingly, he gives each and every one of us exactly what we need to help us get through this. He offers himself as a jungle gym for Dylan allowing himself to be stood on and tackled by our rambunctious 4 year old. For Aidan he is the ultimate therapy dog, laying at the foot of his bed at night or on the couch with his head in Aidan's lap. He's my running partner and even though I go slower with him than when I run solo, I enjoy my runs with champ much more than the ones he misses. At night and in the mornings he is the snuggling bear that Jamie needs. He is perfectly content to have her arms wrapped tightly around him for as long as she wants to snuggle him. He is the absolute perfect dog for us and is part of the family. To be faced with the thought of losing him when he is still so young and vital was too much to bear. I mean I'm certainly not Ernest Hemingway, but even I can spot that metaphor.
We opted to send him to Pittsburgh Vetinary Speciality and Emergency Center where they had an ultrasound machine and could get a better look at was what going on inside him. We decided that there are things far more important in this life than money. We were going to do what it took to keep our family whole. They admitted him and immediately started getting him hydrated via an IV drip. They kept him overnight and did an ultrasound the following morning and things looked better than they expected. A repeat of the X-ray showed a big improvement and it looked like whatever was causing him such great distress had finally started moving.
A couple of days later, after a sizable vet bill, and a large chunk of raw carrot was removed from him during a procedure to get a stool sample, Champ was back home where he belonged. He was seemingly a bit miffed that he was on a bland diet which included an insanely expensive small bag of dog food that apparently tasted awful. He was also not terribly thrilled that we had voided his tickets for the table scrap train that he takes daily commutes on. Joking aside, he was as happy to be home as we were to have him home, and as odd and silly as this may sound, getting through this medical ordeal with Champ made us more optimistic about the cancer battle our family is fighting.
We received a book when we were diagnosed called "Living With Cancer" I didn't think much of it at the time, but almost two months into our battle, I'm struck by just how appropriate that simple title is. This diagnosis is omnipresent and affects every single aspect of our lives. Our Drs told us when we received our diagnosis that we'd get used to a "new normal." We definitely have a better understanding of what they meant, but we're not used to it yet. Perhaps as we get further along in our journey all this stuff will become easier, but right now we're just trying to keep our hands, arms, and legs inside the car.
We opted to send him to Pittsburgh Vetinary Speciality and Emergency Center where they had an ultrasound machine and could get a better look at was what going on inside him. We decided that there are things far more important in this life than money. We were going to do what it took to keep our family whole. They admitted him and immediately started getting him hydrated via an IV drip. They kept him overnight and did an ultrasound the following morning and things looked better than they expected. A repeat of the X-ray showed a big improvement and it looked like whatever was causing him such great distress had finally started moving.
A couple of days later, after a sizable vet bill, and a large chunk of raw carrot was removed from him during a procedure to get a stool sample, Champ was back home where he belonged. He was seemingly a bit miffed that he was on a bland diet which included an insanely expensive small bag of dog food that apparently tasted awful. He was also not terribly thrilled that we had voided his tickets for the table scrap train that he takes daily commutes on. Joking aside, he was as happy to be home as we were to have him home, and as odd and silly as this may sound, getting through this medical ordeal with Champ made us more optimistic about the cancer battle our family is fighting.
Sunday, October 21, 2012
The meltdown
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.
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.
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