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.
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