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.
Sunday, January 27, 2013
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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