"Tuesdays with Morrie" has frequented my mind when sitting down to write a post. Often it's simply the title that sticks with me, but not this week. In the book Morrie explains how he allows himself 10 minutes a day to mourn and feel sorry for himself and then he goes on with the day. When I read that years ago, I thought "wow, what a balanced man, he faces the reality of his situation and then he goes about living." Now, I'm not sure he was human at all. Turning your mind or emotions on and off like that is no simple task.
Recently, fears have infected many of my thoughts. It overwhelms me and makes time my enemy rather than a friend to enjoy. Maybe if Ev and I could have a good cry together that would help.
Regardless, Ev is doing well and continues to be strong. He has had fun playing at home and with family. And, we've been able to drop Ben off at school and see other friends too.
It is almost a shoe-in that we will start the next round of treatment this Tuesday. We have been sent home the past two Tuesdays because Everett's ANC has not been high enough. Both his platelets and white blood cells must hit a certain number for this next phase.
Please continue to pray for Everett. He is in remission, but his battle is far from over. There is still so much that he has to take on and serious effects and reactions that can occur. And, you might as well add his worried mother to the list too.
Sunday, September 29, 2013
Tuesday, September 17, 2013
Another false start
Ev was scheduled to get a spinal tap and start two chemo meds today, but his body had other plans. His ANC is at a whopping 100, so there will be no chemo for a week in hopes that his body will rebuild.
Along with the distribution of one of the chemo meds is a hospital stay at least 4 days long. So, we just side stepped a hospital stay as well. That is, until next week. So, again, we will change our calendars and perhaps he will be done with this interim maintenance by Thanksgiving.
This craze of not knowing what tomorrow will bring is reflective in all of our lives. But, I believe with cancer and perhaps other illnesses, this is intensified. Rather than thinking in years, with cancer you think in days, weeks, or if you are fortunate enough, months.
I have gone from feeling that I can control almost everything in my life to realizing I must submit to what each day brings or be buried beneath it. I have gone from fearing and evading thoughts of death to embracing it and placing more importance on what I decide to do with the time that is before me. And because of this I feel more alive than I have in years.
I will no longer waste my time and energies. I am able now and who knows what tomorrow will bring.
Thank you for your continued thoughts and prayers. We value them all!
Along with the distribution of one of the chemo meds is a hospital stay at least 4 days long. So, we just side stepped a hospital stay as well. That is, until next week. So, again, we will change our calendars and perhaps he will be done with this interim maintenance by Thanksgiving.
This craze of not knowing what tomorrow will bring is reflective in all of our lives. But, I believe with cancer and perhaps other illnesses, this is intensified. Rather than thinking in years, with cancer you think in days, weeks, or if you are fortunate enough, months.
I have gone from feeling that I can control almost everything in my life to realizing I must submit to what each day brings or be buried beneath it. I have gone from fearing and evading thoughts of death to embracing it and placing more importance on what I decide to do with the time that is before me. And because of this I feel more alive than I have in years.
I will no longer waste my time and energies. I am able now and who knows what tomorrow will bring.
Thank you for your continued thoughts and prayers. We value them all!
Friday, September 13, 2013
The bell
Earlier in the week, while we were at clinic, we heard a bell ring. A bell that would be rung by someones great-great grandma when calling everyone in for supper. The boys and I looked at each other, wondering what was going to happen next....was a costumed visitor going to come through the door? were more toys coming our way? Nope. It was better.
Another child was done with his/her treatment. We couldn't see who rang the bell, but we definitely heard it and what a wonderful noise it was. I started thinking about how long until Ev would ring it and if by chance he didn't want to do it that day how I was going to ring the crap out of that bell. I was starting to wonder if we could all take turns ringing it. Are there rules to using the bell?
Even though our struggle continues, what a blessing to hear that another child has made their way through, to an end we all hope for...to be cancer free.
Our victory for now is the fact that Ev is in remission and he is done with his shots! Twelve shots total in two weeks. I haven't even asked the doc if more shots are coming down the road. I don't even want to begin dreading them on Ev's behalf. I just want to focus on how awesome he did and that by his last round he was Hulk in my eyes.
I tell him that he is brave like Captain America and strong like Hulk. More often than not, he's pretty psyched with that idea and then there are times he doesn't care...he doesn't want to face his challenging moment. He doesn't want to be brave and he doesn't want to be strong, he just wants it to be over.
Even still, Ev has dealt with all of this so amazingly. He could get knocked down over and over and he'd still get back up. He has a beautiful spirit and he is truly becoming a super hero in my eyes.
Another child was done with his/her treatment. We couldn't see who rang the bell, but we definitely heard it and what a wonderful noise it was. I started thinking about how long until Ev would ring it and if by chance he didn't want to do it that day how I was going to ring the crap out of that bell. I was starting to wonder if we could all take turns ringing it. Are there rules to using the bell?
Even though our struggle continues, what a blessing to hear that another child has made their way through, to an end we all hope for...to be cancer free.
Our victory for now is the fact that Ev is in remission and he is done with his shots! Twelve shots total in two weeks. I haven't even asked the doc if more shots are coming down the road. I don't even want to begin dreading them on Ev's behalf. I just want to focus on how awesome he did and that by his last round he was Hulk in my eyes.
I tell him that he is brave like Captain America and strong like Hulk. More often than not, he's pretty psyched with that idea and then there are times he doesn't care...he doesn't want to face his challenging moment. He doesn't want to be brave and he doesn't want to be strong, he just wants it to be over.
Even still, Ev has dealt with all of this so amazingly. He could get knocked down over and over and he'd still get back up. He has a beautiful spirit and he is truly becoming a super hero in my eyes.
Tuesday, September 3, 2013
Shots and hospital stays
Through the years, it seems I have morphed from waking up to an alarm clock to waking up when someone jumps on me or starts randomly talking about a new toy or a cartoon they want to watch. Ben is an early bird and has been my alarm clock for the past 4 (almost 5) years. So, I questioned whether I would actually wake up with him being gone (he spent the night at Grandpa and Grammy's). Ev almost always sleeps later than Ben minus maybe a handful of days. Thanks to Jeff, I was not only awake early enough to have a couple cups of coffee, I was also graciously woken.
Ev needed to be at the hospital today by 8 am, which I actually prefer as long as we aren't there for the whole day. We were in at 8 am and out by noon. It was nice to have a short visit. He got two chemo meds, one of which was a stand-in for PEG (the one he became allergic to). At the count of three, both his thighs were "poked" and he was pretty much done...for today. Tomorrow we will go back and he will get two shots again, and then 4 more days beyond until we are done with this particular drug (PEG replacement).
For those wondering how "1-2-3" can add up to 4 hours at the hospital...there's a lot of wait time, accessing his port, blood tests, urine tests, time to be monitored after being given a drug, and any other randomness that can occur.
His ANC was 812 today. His hemoglobin has dropped and so have his platelets. More transfusions might be on the horizon, but the human body is an uncertain thing...so we will see. And, he has a week to lay low (nothing but antibiotic and nausea meds).
In two weeks we will begin our next phase, Interim Maintenance. This phase is less intense, but will require us to be admitted to the hospital 4 times for about 4 days within a two month period. Yes, this means every two weeks we will be at Riley (hopefully for no more than 4 days at a time). This will start September 17. November 12 we will move on to yet another phase. And, with much anticipation by January 2014 our visits to the hospital should go down to once a month. Cheers to the New Year!
Ev needed to be at the hospital today by 8 am, which I actually prefer as long as we aren't there for the whole day. We were in at 8 am and out by noon. It was nice to have a short visit. He got two chemo meds, one of which was a stand-in for PEG (the one he became allergic to). At the count of three, both his thighs were "poked" and he was pretty much done...for today. Tomorrow we will go back and he will get two shots again, and then 4 more days beyond until we are done with this particular drug (PEG replacement).
For those wondering how "1-2-3" can add up to 4 hours at the hospital...there's a lot of wait time, accessing his port, blood tests, urine tests, time to be monitored after being given a drug, and any other randomness that can occur.
His ANC was 812 today. His hemoglobin has dropped and so have his platelets. More transfusions might be on the horizon, but the human body is an uncertain thing...so we will see. And, he has a week to lay low (nothing but antibiotic and nausea meds).
In two weeks we will begin our next phase, Interim Maintenance. This phase is less intense, but will require us to be admitted to the hospital 4 times for about 4 days within a two month period. Yes, this means every two weeks we will be at Riley (hopefully for no more than 4 days at a time). This will start September 17. November 12 we will move on to yet another phase. And, with much anticipation by January 2014 our visits to the hospital should go down to once a month. Cheers to the New Year!
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