Chemo week this week and I [dad] will be taking
Monday’s for the foreseeable future. The
past two weeks have been wonderful, all things considered. Lisa has been energetic and her pain has been
very manageable. She’s been staying in
school until lunch the past two weeks, participated in the children’s mass at
church, and brought up the gifts during the service again. We can’t explain why she’s doing so well, and
we’re not sure we want to know. We’re just living in the moment, and these days
the moments are really good. Prior to
beginning this post I asked Lisa what she would like to say to everyone reading
this and she said to “tell them that I love them”. So there you have it folks, you are touched
across the void by Lisa’s love.
Monday, December 17, 2012
Monday, December 10, 2012
My little Christmas Miracle
I know the posts have been few in the past month and the ones that have been written have been by Mike. The death of Bridget and then Ian right after really robbed me of hope and I found myself struggling to stay positive. Thanksgiving came and while I mentally counted my blessings, I found no words with which to fill the blog even as I sat on the beach of my beloved Topsail, NC.
The Monday after Thanksgiving pushed me into an even deeper funk. It was chemo Monday for Lisa and the day was playing out just as the prior 2 chemo Mondays had.....awful. I woke Lisa and watched her as she struggled to sit up in bed; the pain in her legs so bad, I needed to assist her. Once she was out of bed she had difficulty walking....but being 8 and stubborn she adamantly screamed and told me she didn't need help. Helpless, I stood by and watched her painstaking tiny baby steps to the bathroom wondering if she refused help because she was stubborn or because having someone touch her made the pain worse.
The morning involves a slow move up to my bedroom where she could "watch" tv while sleeping. Around 11:30 the tears began as I help her get up and into the car to go to the hospital. Once there and the car parked, we begin the slow, painful walk across the parking structure because no wheel chairs are available in the structure. My little warrior rallies and waddles slowly towards the wheel chairs by the door. Once in one, she settles back as we make our way to the lab for her blood draw. The lab tech lets her to stay in the wheelchair for the blood draw which allows Lisa to save her energy and minimize her pain. We leave the lab and go upstairs to see the doctor. The wait is long as is typical for a Monday. Lisa spends most of her time napping in the wheelchair, not wanting to leave the comfort of it to lay on the bed. After about an hour, the doc and nurse come in. Lisa wants nothing to do with anyone and the exam is cut short by her insistence that she needs to use the restroom. The nurse witnesses Lisa's painful steps from the wheelchair to the bathroom and the look on the nurse's face is sadness and horror. No one is used to seeing spunky little Lisa so beaten.
Her chemo nurse secures a room with a bed for her to receive infusion. We are there until 7 pm. We have trouble managing Lisa's pain even though she gets 2-3 extra boosts of morphine on top of her normal pain meds. I spend most of the day praying that history repeats itself and that this chemo Monday and things will get better with each dose of chemo she received. The nurses look at me with concern in their eyes and encourage me to speak with palliative care to up Lisa's pain meds. I understand the logic in this because no one wants to see Lisa suffer and I try convince them that Lisa is not experiencing this type of pain on a daily basis. I tell them that chemo Monday is awful but that in the past two rounds, with each day of chemo she feels a little better and her carry her into week 2 where her pain is still much less and we only need to give her an occasional extra dose of pain meds on top of her regular 3 doses a day of potent pain relief meds. As we go thru week 3, her pain generally increases and so we increase her dosage of extra pain meds. As we come to the end of week 3 and approach chemo Monday, her pain has escalated but we can normally control it thru the weekend with the extra meds and the knowledge that Monday will be chemo Monday and we will restart the cycle. I'm sure the nurses are concerned that I am in denial about Lisa's actual state of well-being, especially since when it was time to go home I cannot get Lisa to budge from the bed. It takes 3 nurses and another dose of morphine to carry her from the bed to her wheelchair. Another conversation about upping her pain meds and how I need to talk with palliative care ensues. I'm not even sure how I get her from the wheelchair into the car. Sheer determination and tears from both us were certainly part of the process. The ride home is quiet and followed by early bedtime for both of us.
Thankfully, history repeats itself and my prayers are answered as Tuesday turns out to be a much better day. Lisa is up and about and when Mike takes her for her chemo, he says the nurse's jaws drop open as Lisa walks in on her own two feet. She is still having pain, but not nearly as bad as the day before.
And so, as with the two prior cycles of chemo, each day has progressively gotten better and has everyone scratching their heads and wondering how exactly a round of chemo can have such a huge impact.
I find myself questioning how things could go from so devastatingly painful to so much better in just a few days....could chemo really be that effective? Even though I expected Lisa to have better days in week 2, I find myself being more astonished each day this past week at how much better she is doing. Normally, school days involve her taking the bus to school (her choice) and upon entering the classroom, telling her para pro she is ready to go home. Her para pro will use every trick in the book to get Lisa to do some schoolwork. They will work for about an hour, than Lisa will normally rest on the cot they have in the room and around 10:30 I will receive a text to make sure I pick her up by 11:30 so she can come home and nap for the afternoon. This last week, not only has she not required many extra doses of pain meds, she has actually stayed at school until lunchtime on 3 days. I've been amazed. She has lasted longer at school and even her siblings have noticed that she seems to be awake more and is looking better.
Today at church, every single one of us had our jaw drop open as Lisa sprang from her chair to go to the "children's" portion of the mass. In her 8 years of life, she has gone to this maybe 3 times and that was when an older sibling escorted her. Normally, mass time is nap time for her and we take up 3 extra seats as she stretches out on them and snoozes. We all watched in astonishment as she paraded out with the other children to go to their room waving to us as she went. Her return was even more amazing as she led the children in the procession of bringing the gifts up to the alter. She carried the hosts (and her baby, of course) from the back of the church all the way to the front and presented them to Father. Honestly, I wished I had my camera....it truly was a moment for us.
So....what has made this difference? The question plagued me all last week. We really did not do anything different in Lisa's course of treatment. We had one additional day of chemo this round, but surely that one day could not have had such lasting effects. While I joked the new baby doll she got was motivating her, I didn't really think that was the answer. Thursday night, as I got ready for bed, and was once again smiling at how great a day Lisa had and wondering what had made the difference...a thought resonated thru my mind.... Louise's novena. Louise is Bridgette's mom and during my deep funk I glanced a message from her on my phone that said she was starting a novena for Lisa. I had not paid much attention at the time because of my mood. As I stood there Thursday night, I realized that Lisa had started improving about a week prior....just about the time that email had come thru. I ran to the computer and checked the post. On Nov 30, the last day of chemo week, Louise had posted:
The Monday after Thanksgiving pushed me into an even deeper funk. It was chemo Monday for Lisa and the day was playing out just as the prior 2 chemo Mondays had.....awful. I woke Lisa and watched her as she struggled to sit up in bed; the pain in her legs so bad, I needed to assist her. Once she was out of bed she had difficulty walking....but being 8 and stubborn she adamantly screamed and told me she didn't need help. Helpless, I stood by and watched her painstaking tiny baby steps to the bathroom wondering if she refused help because she was stubborn or because having someone touch her made the pain worse.
The morning involves a slow move up to my bedroom where she could "watch" tv while sleeping. Around 11:30 the tears began as I help her get up and into the car to go to the hospital. Once there and the car parked, we begin the slow, painful walk across the parking structure because no wheel chairs are available in the structure. My little warrior rallies and waddles slowly towards the wheel chairs by the door. Once in one, she settles back as we make our way to the lab for her blood draw. The lab tech lets her to stay in the wheelchair for the blood draw which allows Lisa to save her energy and minimize her pain. We leave the lab and go upstairs to see the doctor. The wait is long as is typical for a Monday. Lisa spends most of her time napping in the wheelchair, not wanting to leave the comfort of it to lay on the bed. After about an hour, the doc and nurse come in. Lisa wants nothing to do with anyone and the exam is cut short by her insistence that she needs to use the restroom. The nurse witnesses Lisa's painful steps from the wheelchair to the bathroom and the look on the nurse's face is sadness and horror. No one is used to seeing spunky little Lisa so beaten.
Her chemo nurse secures a room with a bed for her to receive infusion. We are there until 7 pm. We have trouble managing Lisa's pain even though she gets 2-3 extra boosts of morphine on top of her normal pain meds. I spend most of the day praying that history repeats itself and that this chemo Monday and things will get better with each dose of chemo she received. The nurses look at me with concern in their eyes and encourage me to speak with palliative care to up Lisa's pain meds. I understand the logic in this because no one wants to see Lisa suffer and I try convince them that Lisa is not experiencing this type of pain on a daily basis. I tell them that chemo Monday is awful but that in the past two rounds, with each day of chemo she feels a little better and her carry her into week 2 where her pain is still much less and we only need to give her an occasional extra dose of pain meds on top of her regular 3 doses a day of potent pain relief meds. As we go thru week 3, her pain generally increases and so we increase her dosage of extra pain meds. As we come to the end of week 3 and approach chemo Monday, her pain has escalated but we can normally control it thru the weekend with the extra meds and the knowledge that Monday will be chemo Monday and we will restart the cycle. I'm sure the nurses are concerned that I am in denial about Lisa's actual state of well-being, especially since when it was time to go home I cannot get Lisa to budge from the bed. It takes 3 nurses and another dose of morphine to carry her from the bed to her wheelchair. Another conversation about upping her pain meds and how I need to talk with palliative care ensues. I'm not even sure how I get her from the wheelchair into the car. Sheer determination and tears from both us were certainly part of the process. The ride home is quiet and followed by early bedtime for both of us.
Thankfully, history repeats itself and my prayers are answered as Tuesday turns out to be a much better day. Lisa is up and about and when Mike takes her for her chemo, he says the nurse's jaws drop open as Lisa walks in on her own two feet. She is still having pain, but not nearly as bad as the day before.
And so, as with the two prior cycles of chemo, each day has progressively gotten better and has everyone scratching their heads and wondering how exactly a round of chemo can have such a huge impact.
I find myself questioning how things could go from so devastatingly painful to so much better in just a few days....could chemo really be that effective? Even though I expected Lisa to have better days in week 2, I find myself being more astonished each day this past week at how much better she is doing. Normally, school days involve her taking the bus to school (her choice) and upon entering the classroom, telling her para pro she is ready to go home. Her para pro will use every trick in the book to get Lisa to do some schoolwork. They will work for about an hour, than Lisa will normally rest on the cot they have in the room and around 10:30 I will receive a text to make sure I pick her up by 11:30 so she can come home and nap for the afternoon. This last week, not only has she not required many extra doses of pain meds, she has actually stayed at school until lunchtime on 3 days. I've been amazed. She has lasted longer at school and even her siblings have noticed that she seems to be awake more and is looking better.
Today at church, every single one of us had our jaw drop open as Lisa sprang from her chair to go to the "children's" portion of the mass. In her 8 years of life, she has gone to this maybe 3 times and that was when an older sibling escorted her. Normally, mass time is nap time for her and we take up 3 extra seats as she stretches out on them and snoozes. We all watched in astonishment as she paraded out with the other children to go to their room waving to us as she went. Her return was even more amazing as she led the children in the procession of bringing the gifts up to the alter. She carried the hosts (and her baby, of course) from the back of the church all the way to the front and presented them to Father. Honestly, I wished I had my camera....it truly was a moment for us.
So....what has made this difference? The question plagued me all last week. We really did not do anything different in Lisa's course of treatment. We had one additional day of chemo this round, but surely that one day could not have had such lasting effects. While I joked the new baby doll she got was motivating her, I didn't really think that was the answer. Thursday night, as I got ready for bed, and was once again smiling at how great a day Lisa had and wondering what had made the difference...a thought resonated thru my mind.... Louise's novena. Louise is Bridgette's mom and during my deep funk I glanced a message from her on my phone that said she was starting a novena for Lisa. I had not paid much attention at the time because of my mood. As I stood there Thursday night, I realized that Lisa had started improving about a week prior....just about the time that email had come thru. I ran to the computer and checked the post. On Nov 30, the last day of chemo week, Louise had posted:
I will be praying this novena for Lisa starting today. This powerful novena was prayed for Bridget the year she had a miraculous recovery at Christmas. Novenas are not magic. The answers whether direct or spiritual are from persistence in prayer(ask and you shall receive) God doesn't always give us what we ask for specifically, but he always gives us what we need. I post in case others would like to join me. Happy Advent!
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