It wasn't too hard to find the beauty today...Maranda got her braces off and that gave us all something to smile about:)
Wednesday, April 10, 2013
Live LIFE
Wow...so what is worse?
Having to stand by your cancer warrior's bedside and see her laying still, eyes closed, pain meds pumping, body ravaged with scars and bruising while doctors, nurses, priests all check in on her (and you) to try and figure out exactly where she is on the "timeline of her life".
Or, having to sit in a room with your husband and then your teens and talk about when, not if, the final chapter of life plays out should it be in your home, the hospital or hospice? I suppose it should make me feel better that the palliative care docs start out by telling us that years ago many children died young from cancers and heart disease because we didn't have the meds, technology, drugs, etc. to keep them alive. I suppose I should take comfort in knowing that among us walk adults who somehow survived the death of a sibling way back when. I suppose it should make me feel better that the the team tells me I have wonderful, loving, caring teens and we are a great family. I suppose I should take comfort that all this is preparing us for the inevitable, but honestly this is not a conversation I think anyone should ever have to be part of least of all my teenagers.
So, where am I at? How am I doing? As I tell our medical team, I'm still toeing the line. I'm still not sure which way this is going to play out. I know we've been here before and some of those times it has been much worse. I find myself "hoping" instead of "BELIEVING".
As my brain shifts and filters and processes I find myself asking why I hope instead of BELIEVE? I guess there is some part of me that is doubting Lisa can walk out of there because of the 3 strikes your out mentality. Honestly, how many times can you expect to cheat death and outlive science? How many times do you rally only to end up back in this same spot facing the same discussions and decisions? How much pain can one little body endure? How much do you push to get her up and moving if inevitably she is going to die of this blasted neuroblastoma?
And there it is...inevitably....the word that right now sparks a little fire in my brain. It is inevitable that we will all die. So, should we just off ourselves now because sooner or later we are going to die and might as well take the short road? Of course not. We live. We wake up every morning and face our day, good or bad, and seek to LIVE life. We live by feeling, doing, and being with others and making our mark on the world. If that living can only be done in small increments every day, do you still fight for those moments? If those moments are pain free, filled with smiles, giggles, laughs and feeding your babydoll, yes, you fight. Do you BELIEVE? You do and you make every moment count.
Having to stand by your cancer warrior's bedside and see her laying still, eyes closed, pain meds pumping, body ravaged with scars and bruising while doctors, nurses, priests all check in on her (and you) to try and figure out exactly where she is on the "timeline of her life".
Or, having to sit in a room with your husband and then your teens and talk about when, not if, the final chapter of life plays out should it be in your home, the hospital or hospice? I suppose it should make me feel better that the palliative care docs start out by telling us that years ago many children died young from cancers and heart disease because we didn't have the meds, technology, drugs, etc. to keep them alive. I suppose I should take comfort in knowing that among us walk adults who somehow survived the death of a sibling way back when. I suppose it should make me feel better that the the team tells me I have wonderful, loving, caring teens and we are a great family. I suppose I should take comfort that all this is preparing us for the inevitable, but honestly this is not a conversation I think anyone should ever have to be part of least of all my teenagers.
So, where am I at? How am I doing? As I tell our medical team, I'm still toeing the line. I'm still not sure which way this is going to play out. I know we've been here before and some of those times it has been much worse. I find myself "hoping" instead of "BELIEVING".
As my brain shifts and filters and processes I find myself asking why I hope instead of BELIEVE? I guess there is some part of me that is doubting Lisa can walk out of there because of the 3 strikes your out mentality. Honestly, how many times can you expect to cheat death and outlive science? How many times do you rally only to end up back in this same spot facing the same discussions and decisions? How much pain can one little body endure? How much do you push to get her up and moving if inevitably she is going to die of this blasted neuroblastoma?
And there it is...inevitably....the word that right now sparks a little fire in my brain. It is inevitable that we will all die. So, should we just off ourselves now because sooner or later we are going to die and might as well take the short road? Of course not. We live. We wake up every morning and face our day, good or bad, and seek to LIVE life. We live by feeling, doing, and being with others and making our mark on the world. If that living can only be done in small increments every day, do you still fight for those moments? If those moments are pain free, filled with smiles, giggles, laughs and feeding your babydoll, yes, you fight. Do you BELIEVE? You do and you make every moment count.
Tuesday, April 9, 2013
Pain Continues
Thank you to all who are reading, posting and praying. Your words bring comfort and strength.
Lisa continues to be in pain. The plan right now is to get her comfortable. To do this we are upping pain killers, changing from oral to IV meds, adding a new one here and there whatever it takes to relieve her pain. She is sleeping most of the time (or at least appears to be but I suspect she is just using this as her defense mechanism so she doesn't have to talk to anyone).
She continues to throw up every so often. We think this is from disease activity and pressure in the head. It's awful to watch. She has a hard time sitting up because of the all-over pain she is feeling. Having her raise her head seems to make her more nauseous. This creates quite the challenge when she gets sick because we have to manipulate her to sitting and somehow figure out how to support her head so she doesn't choke. (I can only imagine what pain she is really having.....most likely along the lines of a monster migraine (or a huge hangover) where you just want dark, silence and to lay very still)
She has not had a fever since she has been admitted and her cough has subsided. All indicators that this is cancer at work, not an infection or a virus:( (oops change that, nurse just took her temp and she is at 100.4 which is enough to have to notify docs)
I cannot bring myself to post a picture of her for all of you because this is not the Lisa you want to think about.
So instead, I am posting a card one of her classmates made her.
Please keep praying.
Lisa continues to be in pain. The plan right now is to get her comfortable. To do this we are upping pain killers, changing from oral to IV meds, adding a new one here and there whatever it takes to relieve her pain. She is sleeping most of the time (or at least appears to be but I suspect she is just using this as her defense mechanism so she doesn't have to talk to anyone).
She continues to throw up every so often. We think this is from disease activity and pressure in the head. It's awful to watch. She has a hard time sitting up because of the all-over pain she is feeling. Having her raise her head seems to make her more nauseous. This creates quite the challenge when she gets sick because we have to manipulate her to sitting and somehow figure out how to support her head so she doesn't choke. (I can only imagine what pain she is really having.....most likely along the lines of a monster migraine (or a huge hangover) where you just want dark, silence and to lay very still)
She has not had a fever since she has been admitted and her cough has subsided. All indicators that this is cancer at work, not an infection or a virus:( (oops change that, nurse just took her temp and she is at 100.4 which is enough to have to notify docs)
I cannot bring myself to post a picture of her for all of you because this is not the Lisa you want to think about.
So instead, I am posting a card one of her classmates made her.
Please keep praying.
Monday, April 8, 2013
The Talk:(
After a night in the ER because of unstable blood pressure, Lisa was finally moved to the floor today at 9 am. Mike reports that one of our head docs stopped by at 12:00 and
had “the talk”. The scans DO indicate disease progression in the head
and multiple other sites. Palliative Care will be by later to talk, and
our other doctore will be there late tonight to talk to us.
Hate this.....praying and hoping Lisa can one again disprove science and walk the hell out of there and prove the might of prayers and small miracles.
Believe
Live Life Fully
Aspire
Stay the course
Tenacity, never Quit
Sunday, April 7, 2013
Please Pray...Lisa not doing well
It has been a long time since I have written a post. Mike has made the most recent ones. I find myself deplete of thought and emotion, grasping at straws and living in denial. Today reality has given me a cold slap across the face.
Our Easter celebration last week was status quo (except I forgot to take pictures like I normally do). Lisa woke everyone up by 7:30 and all the eggs and baskets were found by 9:30 wtih plenty of time to get to Mass. We went to my dad's place after for a huuuuuggggggeeeee brunch and enjoyed watching the basketball game with him in the afternoon while Lisa curled up in his bed for her normal nap.
Mike took Lisa up to Grandma Mc's on Monday and they were there the entire week. I worked while Maranda enjoyed her break hanging out with friends. Tommy and Chrissy who neglected to turn in their schoolwork before break spent their time spring cleaning the house as a consequence for their grades. The week went by fairly quickly. I got a little weekend time to myself when Aunt Sharon picked up the teens and took them up to Grandma's.
Hearing the sound of Lisa's voice as she came thru the door today brought a huge smile to my face. As I got my hug, my heart dropped. She didn't look so good to me. She looked like she had gained more weight, she had dark rings under her eyes, and she had a cough that sound pretty bronchial. Mike said that she had frequent complaints of headaches and had been taking break-thru pain meds once a day. As we got ready for church her complaints vacillated from headache to leg pain to nausea. She was willing to go to church but it was a bit of a struggle for her. While normally she just lays down for the whole mass, today she needed to leave twice because she felt like throwing up.
Being the trooper that she is, she willingly agreed to go to breakfast with everyone to celebrate our special family day. It was 5 years ago that Tommy, Chrissy, and Lisa legally changed their last names to McMaster and we became a forever family. Lisa ate a little bit at the restaurant and we got home at about 3. I noticed that now it looked like she had a "black" eye. A wave of nauseau washed over me....this is not good. Often times "raccoon eyes" is one of the tell-tale signs for diagnosing neuroblastoma. I've always been grateful that Lisa has never had this symptom as it is not pretty to look at and most likely means there is cancer activity in the brain.
She slept the afternoon away and came down for dinner and to play a board game. Now, both of her eyes were looking a little black/blue...booooo!!! After an hour of being up, she ended the board game and headed back to bed with leg pain and nausea. Shortly after she threw up and her temp was at 100.1. About 20 minutes later she threw up again. Mike and I gave each other a knowing look. At the hour mark, I took her temp again 100.3. We know where this is going, no question given how she has been looking all day. We got calendars out and schedules squared away for the teens, made phone calls for back up drivers, and did a 11:00 temp check. 101.1. Go time. Bags packed, hospital called, Lisa moved from the bed, Lisa throws up, Lisa and Mike get in the car...on the road by 11:20 pm.
Please pray. I've been having panic attacks all day anticipating this. The warnings and words of the doctors spinning thru my head....."you know where this is going to end up, you know what the end result is going to be". I may "know" but I'm still not ready. I love that girl more than anything and think she does more good on earth then in heaven. We need another miracle...we need her to get better. Hoping that this is just a virus and that antibotics take care of it...hoping doctors are wrong....hoping there are many more days...years...in Lisa's life. Hoping for a miracle. Please pray.
Our Easter celebration last week was status quo (except I forgot to take pictures like I normally do). Lisa woke everyone up by 7:30 and all the eggs and baskets were found by 9:30 wtih plenty of time to get to Mass. We went to my dad's place after for a huuuuuggggggeeeee brunch and enjoyed watching the basketball game with him in the afternoon while Lisa curled up in his bed for her normal nap.
Mike took Lisa up to Grandma Mc's on Monday and they were there the entire week. I worked while Maranda enjoyed her break hanging out with friends. Tommy and Chrissy who neglected to turn in their schoolwork before break spent their time spring cleaning the house as a consequence for their grades. The week went by fairly quickly. I got a little weekend time to myself when Aunt Sharon picked up the teens and took them up to Grandma's.
Hearing the sound of Lisa's voice as she came thru the door today brought a huge smile to my face. As I got my hug, my heart dropped. She didn't look so good to me. She looked like she had gained more weight, she had dark rings under her eyes, and she had a cough that sound pretty bronchial. Mike said that she had frequent complaints of headaches and had been taking break-thru pain meds once a day. As we got ready for church her complaints vacillated from headache to leg pain to nausea. She was willing to go to church but it was a bit of a struggle for her. While normally she just lays down for the whole mass, today she needed to leave twice because she felt like throwing up.
Being the trooper that she is, she willingly agreed to go to breakfast with everyone to celebrate our special family day. It was 5 years ago that Tommy, Chrissy, and Lisa legally changed their last names to McMaster and we became a forever family. Lisa ate a little bit at the restaurant and we got home at about 3. I noticed that now it looked like she had a "black" eye. A wave of nauseau washed over me....this is not good. Often times "raccoon eyes" is one of the tell-tale signs for diagnosing neuroblastoma. I've always been grateful that Lisa has never had this symptom as it is not pretty to look at and most likely means there is cancer activity in the brain.
She slept the afternoon away and came down for dinner and to play a board game. Now, both of her eyes were looking a little black/blue...booooo!!! After an hour of being up, she ended the board game and headed back to bed with leg pain and nausea. Shortly after she threw up and her temp was at 100.1. About 20 minutes later she threw up again. Mike and I gave each other a knowing look. At the hour mark, I took her temp again 100.3. We know where this is going, no question given how she has been looking all day. We got calendars out and schedules squared away for the teens, made phone calls for back up drivers, and did a 11:00 temp check. 101.1. Go time. Bags packed, hospital called, Lisa moved from the bed, Lisa throws up, Lisa and Mike get in the car...on the road by 11:20 pm.
Please pray. I've been having panic attacks all day anticipating this. The warnings and words of the doctors spinning thru my head....."you know where this is going to end up, you know what the end result is going to be". I may "know" but I'm still not ready. I love that girl more than anything and think she does more good on earth then in heaven. We need another miracle...we need her to get better. Hoping that this is just a virus and that antibotics take care of it...hoping doctors are wrong....hoping there are many more days...years...in Lisa's life. Hoping for a miracle. Please pray.
Wednesday, March 13, 2013
We apologize for the lack of updates lately. Lisa has been holding
fairly steady but her blood tests have been coming in lower and lower.
Yesterday was the first transfusion she has needed in months. This might suggest that her bone marrow is having a harder and harder time recovering from the successive rounds of chemo. She's been getting chemo every third week now since October I think. I don't even want to look back at the log to find out.
Life has been fairly stable lately so I don't want to even think about it. Unfortunately, I suspect we're approaching decision time again. Simply continuing chemo indefinitely isn't an option. Options are getting more limited because the disease is also in her brain. I think we may be changing the chemo either next round or the round after that, and that could bring on any number of nasty side effects.
It seems the nearly all of the neuroblastoma trials do not address disease in the brain. Chemo agents simply have a tough time [or simply cannot] penetrating past the brain dura layer. So that effectively renders her ineligible for the experimental trials and studies that we would like to get her into.
Keep her in your prayers and we'll keep you in ours.
Yesterday was the first transfusion she has needed in months. This might suggest that her bone marrow is having a harder and harder time recovering from the successive rounds of chemo. She's been getting chemo every third week now since October I think. I don't even want to look back at the log to find out.
Life has been fairly stable lately so I don't want to even think about it. Unfortunately, I suspect we're approaching decision time again. Simply continuing chemo indefinitely isn't an option. Options are getting more limited because the disease is also in her brain. I think we may be changing the chemo either next round or the round after that, and that could bring on any number of nasty side effects.
It seems the nearly all of the neuroblastoma trials do not address disease in the brain. Chemo agents simply have a tough time [or simply cannot] penetrating past the brain dura layer. So that effectively renders her ineligible for the experimental trials and studies that we would like to get her into.
Keep her in your prayers and we'll keep you in ours.
Friday, February 15, 2013
THON 2013
Lisa continues on in about the same condition as she was in the last post, which is good. Her blood tests from this Wednesday were “Great”. I don’t understand it but I’m lovin’ it. She continues to wake up in the morning half of the time on her own for school and get herself ready. We typically pick her up at about 12:30 – 1:00 and she will come home and sleep for a couple hours.
She’s a healthy eater in that she makes pretty good choices for an 8 year old. Carrots, apples, berries, low fat cottage cheese, toast, shredded wheat, or waffles for breakfast. (and not a whole lot I might add) The same choices for lunch with the occasional inclusion of mac and cheese. Dinner is whatever magical concoction dad can pull together. (usually amazing) We never really stocked up on too much of the “bad things” but these days we’re a little more conscious. We’re still trying to get a grip on Lisa’s weight gain and she’s on board. Every now and then you can catch her doing some little exercises that her teachers have taught her. I think it’s working. I’m not having trouble zipping up her jacket like I was a couple weeks ago.
So what’s on tap for the near future? Chemo is scheduled for next week. Send her your best.
This weekend Lisa will be taking her family on a journey to the city of State College, PA to attend THON. There she will enthrall the gathering with her infectious wit and spirit. THON is the Penn State IFC/Panhellenic Dance Marathon. It is a yearlong effort, by the students, to raise funds and awareness for the fight against pediatric cancer. Since 1977, THON has raised more than $89 million for the Four Diamonds Fund at Penn State Hershey Children's Hospital. We are all very excited to participate in this event and spend some quality time with our PA cousins. Click on the link to find out more about this amazing event.
http://www.thon.org/
Have a great weekend and thanks for checking in.
Mike
She’s a healthy eater in that she makes pretty good choices for an 8 year old. Carrots, apples, berries, low fat cottage cheese, toast, shredded wheat, or waffles for breakfast. (and not a whole lot I might add) The same choices for lunch with the occasional inclusion of mac and cheese. Dinner is whatever magical concoction dad can pull together. (usually amazing) We never really stocked up on too much of the “bad things” but these days we’re a little more conscious. We’re still trying to get a grip on Lisa’s weight gain and she’s on board. Every now and then you can catch her doing some little exercises that her teachers have taught her. I think it’s working. I’m not having trouble zipping up her jacket like I was a couple weeks ago.
So what’s on tap for the near future? Chemo is scheduled for next week. Send her your best.
This weekend Lisa will be taking her family on a journey to the city of State College, PA to attend THON. There she will enthrall the gathering with her infectious wit and spirit. THON is the Penn State IFC/Panhellenic Dance Marathon. It is a yearlong effort, by the students, to raise funds and awareness for the fight against pediatric cancer. Since 1977, THON has raised more than $89 million for the Four Diamonds Fund at Penn State Hershey Children's Hospital. We are all very excited to participate in this event and spend some quality time with our PA cousins. Click on the link to find out more about this amazing event.
http://www.thon.org/
Have a great weekend and thanks for checking in.
Mike
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