Ev watching the video clip of kids on the HEMOC floor of a different hospital sing and have fun to the song "Brave." He has already watched it four times in about an hour.
Wednesday, October 23, 2013
Tuesday, October 22, 2013
Halloween at Riley
Our camera has been out of commission for awhile. Honestly, it's almost worse than the camera on our phones. But, as I was trying to de-clutter our house today I came across the wretched camera. I looked at the last photos that were taken and they were of Everett's 2nd birthday party. I almost lost it...that healthy face, no presence of emotional or physical scars and a head full of shiny blonde hair. I stopped looking because I could remember the day well enough on my own. I also had to stop feeling sorry for Ev, myself and our whole family. We aren't at the mercy of this cancer and therefore can not feel sorry for ourselves. Even though the rippling effect of cancer can steal moments from us, we still work hard to get them back and find new ways and new moments.
Ev has successfully gone through the first half of his interim maintenance phase and I am thankful. It was not without issues and moments of concern, but he made it through. There were a couple of times in the hospital that he told me he was sad. One of those times, I told him I was sad too and he told me that wasn't ok. He told me I had to be happy. So, I lied and told him I was and he was content. The silver lining in moments like this is that I do have the power to lift his spirits and that at times he will mention people who he thinks of as happy. He'll say, "Mommy, I'm going to be happy like daddy."
In a months time we will have two more scheduled admittances for high-dose methotrexate and vincristine. Also, in the next week he will get a new port (this was the root of the issues we've been having). So, Halloween will be at Riley and Ev wants to be Batman. Lets hope he doesn't break another line when he turns into Batman while attached to his fluids and meds. Kids...super heroes, were never meant to be tethered to anything and he reminds us regularly.
Ev has successfully gone through the first half of his interim maintenance phase and I am thankful. It was not without issues and moments of concern, but he made it through. There were a couple of times in the hospital that he told me he was sad. One of those times, I told him I was sad too and he told me that wasn't ok. He told me I had to be happy. So, I lied and told him I was and he was content. The silver lining in moments like this is that I do have the power to lift his spirits and that at times he will mention people who he thinks of as happy. He'll say, "Mommy, I'm going to be happy like daddy."
In a months time we will have two more scheduled admittances for high-dose methotrexate and vincristine. Also, in the next week he will get a new port (this was the root of the issues we've been having). So, Halloween will be at Riley and Ev wants to be Batman. Lets hope he doesn't break another line when he turns into Batman while attached to his fluids and meds. Kids...super heroes, were never meant to be tethered to anything and he reminds us regularly.
Sunday, October 13, 2013
A few photos
Ben's pre-K teacher asked for a family photo...and we don't have any (oops!). So, I took some with my phone while at a favorite walking path of ours.
Ev has not lost any more hair, but I did shave him pretty close so that we wouldn't have to deal with his hair while we are in and out of the hospital for the next month or two. The boy loves to swing.
Saturday, October 5, 2013
Not lucky
I am fond of taking personality tests. So, when I saw a fun one on Facebook today, I took it and found that I am many things, but foremost, I am lucky. Well, crap...I guess I can't believe the description. First, I consider "lucky" to be on a message found in a fortune cookie and second, no, I am not.
Yes, I am aware that these descriptions hardly tell us the truth about ourselves, but I still get intrigued to see what people come up with.
Today has been rather unlucky for us...little things that by themselves are not so bad, but piled up...I am just glad today is over. A note to that...thanks to the Ronald McDonald house I was able to do a load of laundry (those boxes secured next to the cash registers at Mc D's...well the money helps in many ways, but now we smell good too).
We've been in the hospital for 5 days now. It was predicted that it would be 3-5days, so we aren't too far off. The part that messes with my sanity is that Ev's body was doing awesome at getting the methotrexate out of his system and then all of a sudden his body decided to slow and then chill out.
So, we have two blood tests a day to check on his levels and then he takes a med that helps build up good cells. This evening his fluids were bumped up, so a diaper change every hour is a realistic possibility.
The nurses had to re-access his port because the needle slipped out. His skin started to swell with fluid. Ev found it uncomfortable, but he wasn't in pain. And, even though he didn't want to deal with any of it...a Dum-Dum at the end seemed to make it all go away.
Hopefully by morning more of the chemo will be flushed out so we can go home and be a family again.
Yes, I am aware that these descriptions hardly tell us the truth about ourselves, but I still get intrigued to see what people come up with.
Today has been rather unlucky for us...little things that by themselves are not so bad, but piled up...I am just glad today is over. A note to that...thanks to the Ronald McDonald house I was able to do a load of laundry (those boxes secured next to the cash registers at Mc D's...well the money helps in many ways, but now we smell good too).
We've been in the hospital for 5 days now. It was predicted that it would be 3-5days, so we aren't too far off. The part that messes with my sanity is that Ev's body was doing awesome at getting the methotrexate out of his system and then all of a sudden his body decided to slow and then chill out.
So, we have two blood tests a day to check on his levels and then he takes a med that helps build up good cells. This evening his fluids were bumped up, so a diaper change every hour is a realistic possibility.
The nurses had to re-access his port because the needle slipped out. His skin started to swell with fluid. Ev found it uncomfortable, but he wasn't in pain. And, even though he didn't want to deal with any of it...a Dum-Dum at the end seemed to make it all go away.
Hopefully by morning more of the chemo will be flushed out so we can go home and be a family again.
Wednesday, October 2, 2013
Interim phase: Round 1
We were admitted to Riley yesterday and we have 3 1/2 hours left of the 24 hrs. of methotrexate. The finish line is before us and he has done so well thus far. His body has needed a little bit of help to excrete the fluid/drug, but that is a typical occurrence in this situation.
Ev's body is being polluted with this drug to wipe out both good and bad cells and then we go in and rescue his good cells with another drug. So, once this 24hrs. is up, we will be working to get methotrexate out of his body. When this is achieved we get to go home (3-5 days).
I had prepared myself to help a sick upset child get through the day...all the while having to go through every article of clothing I brought as toxins pour from his body. But, alas, victory for now is ours!
Ev's ANC yesterday was in the 3,000s! It's great that we can see that the treatments are working as his body takes longer to rebuild, but does rebuild and does in a big way. Today, we can breath easier.
Ev's body is being polluted with this drug to wipe out both good and bad cells and then we go in and rescue his good cells with another drug. So, once this 24hrs. is up, we will be working to get methotrexate out of his body. When this is achieved we get to go home (3-5 days).
I had prepared myself to help a sick upset child get through the day...all the while having to go through every article of clothing I brought as toxins pour from his body. But, alas, victory for now is ours!
Ev's ANC yesterday was in the 3,000s! It's great that we can see that the treatments are working as his body takes longer to rebuild, but does rebuild and does in a big way. Today, we can breath easier.
Loving air hockey and scoring on himself.
In our room with his favorite puzzle.
Sunday, September 29, 2013
Tuesdays with ...Ev
"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.
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.
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!
Subscribe to:
Posts (Atom)