Monday we took JP in for more treatment. This phase has increasing doses of Methotrexate as long as JP can handle it. His ANC was 1600 on Monday (say whaaaaat??), I really can't think of the last time he was that high without steroids... Basically if his ANC is above 750 they will increase the dosage, if it's between 500 and 750 they will still administer the Methotrexate but only at the same dose he received last time and if it's below 500 they will hold chemo for 4 days and check again.
We got to the hospital at 10:30 Megan Standard Time (aka 10:50) so we were a little late. Oops. I always try to be on time but I just can't seem to do it! They still let JP have treatment despite his mother's tardiness, thank goodness. He was very happy to be there and even went with the Child Life Specialist to pick out toys. He's never done that - he's always just requested toys and let her bring them to him. He was showing off for his doctors and nurses and everyone was laughing. He told everyone how he watched his Utes and Giants win over the weekend and how we made Utes cupcakes (red velvet). I love that he has no idea how serious this cancer business can be, I wish we all had that luxury to be wrapped up in the innocence of childhood.
JP received the Vincristine chemo and the increased Methotrexate and they asked if we wanted him to have his flu shot. Yep, we sure did, but I got nervous about the actual shot... See when we go in, they access his port - which is kind of like an IV but in his chest - but we put this numbing cream on his skin so he doesn't feel the poke. He doesn't care about getting accessed and does it every week, but getting a flu shot is a different story - we couldn't just put it in through his port like usual. He sat there and watched the nurse clean his leg, pull out the needle and wasn't scared at all. Then she poked him - and he screeeeeeeeeeeamed. Oh boy, it was the saddest thing ever. I'm pretty sure he might now have a fear of needles like most everyone else. Dang. Secretly I'm hoping he's just scared of the nurse not the needles! ;)
Our social worker came in to chat - probably a direct result of me leaving a tear-filled voicemail for her - and we talked about finding a therapist through my work's employee assistance program and to focus on my breathing instead of letting my mind wander. She told me to talk to myself (don't I already do that? haha) about where my breath is instead of letting my mind get away with itself and the what-if's of cancer. She said that between 6 and 9 months after a child is diagnosed is when the mom usually reaches out for some help dealing with all the emotions that have been held in the whole time. I guess I'm pretty normal after all. I've said it before, but most days I can pretend JP doesn't have cancer because he acts so normal. I've just started noticing that I am more and more sensitive to cancer lately, and that could simply be that the last couple months have been harder treatment for JP. It doesn't help when a cancer friend with ALL was admitted to the hospital for a 2nd relapse (!) last week and passed away yesterday... I can't even imagine how her parents feel. Twice they thought they had won their battle but three times they were told their daughter had cancer. We have a 90% chance of beating this ugly disease and so did she (the first time). Ugh. Stupid cancer!
I finally listened to Taylor Swift's song in it's entirety today... Still cried but didn't have to turn it off, so that's good. Cancer still sucks.
Thursday, September 20, 2012
Tuesday, September 11, 2012
Endless thoughts
I have a lot of time to think. Most of the time this occurs at night after Elsie has woken up to nurse and sometimes it's during the day when she's napping and JP is happy with a puzzle or his iPad. I've come to the conclusion that when I'm left alone with my thoughts it is not necessarily a good thing...
Tonight I'm sitting next to JP while everyone else is sleeping because he decided to take a nap at 7:00 tonight, woke up just before 10:00 and now I'm just waiting for the first hint of sleepyness to hit so I can get him in bed. I know, I should not have let him sleep but if you were here, you would have known that I tried not to let him - I covered him in my sheet and blanket (he hates being covered in blankets when he's sleeping). Then we let Ralphie snuggle on top of him and the blankets and nothing. He was out. Cold. Oh well, at least he is sitting next me (and my thoughts), holding my arm, and randomly telling me how much he loves me in the quiet darkness of our living room.
A lot of my thoughts come from a month ago when I was at my high school reunion. We were asked to have one person from each table come up and tell one thing we've learned about life since graduation... of course I was nominated (prior to my knowledge of what I was about to have to do) and all I said was something along the lines of make sure you have good friends and family because when bad things happen they are the ones that will hold you up - vaguely referring to our journey with JP's cancer, of course. I should have used it as an opportunity to let people know about pediatric cancer and how grossly underfunded childhood cancer research is even though it is the #1 disease killer of children, the fact that 1 in 330 children will develop cancer before the age of 19 AND that 1 in 5 of those will not survive... How is it that children are put first in our society in everything except cancer research?? It's maddening, we need to get past the idea of marketing the hope of a cure and just fund the research that will give us cures! Of course that would have been better to have said, but obviously this is a little tender and I can't even type this post without the screen getting blurry.
Anyway, I've come up with a lot of things I've learned since high school, almost all of which I have actually learned/realized in the last 6 months, not 10 years. Here's my thoughts, don't worry, it's not all of them, in no particular order:
#1: Hug your kids and tell them you love them. Every day. You never know when that opportunity may be taken from you. Make sure they know how much you love them, even if they drive you bonkers.
#2: When you have a random thought about a friend/neighbor/family member, act on it. Bake them cupcakes or call them or whatever. You may be an answer to their prayers, sometimes prayers they didn't know they were saying. I can't tell you how many times someone has knocked on my door with dinner or an offer to babysit at the exact moment I was in need. I have been so amazed at how in-tune those around me are and that has made me want to be better and help others even more.
#3: Stop gossiping, judging or making fun of other people. You don't know what load they have been asked to carry or why they say and do the things that they do. We all deal with the same things differently and your way isn't the only way. My way is. (haha, kidding of course!) Walking the halls at Primary Children's Hospital has changed my perspective on basically everything. I feel guilt, anxiety, tremendously blessed, and love all at the same time. It's hard to explain, but I've found that if I can stop talking about others and start looking at how I can serve them or help their situation be better, I feel better about my situation.
#4: Sleep as often as you can. Or stop sleeping so much so you can be productive. I'm not really sure what my stance on sleep is.
#5: Let people help you. As hard as it is, if someone offers to help you with something, you should probably just let them do it. Or offer up something else they can do instead, because they will keep asking until you do. This is very hard for me, I'm a very independent lady who likes to just take care of things myself because I already know how to do it right OR I don't even know what I need so I don't know what to tell people... I'm still working on this - just today I received an email from someone I haven't spoken to in roughly a decade and they offered to do anything they could to help us out. This is a tough one, besides prayers and a cure for cancer I don't really know what to say.
#6: Medical bills can bankrupt anyone. I didn't realize how blessed we are compared to some families dealing with cancer because we have good insurance that is paying 100% of JP's treatments at this point. We met our max out of pocket pretty fast and now we pay a $25 co-pay every time we go to the doctor's and a co-pay for all our prescriptions, but other than that the insurance pays it all. I am blown away with how big of a blessing that is - our insurance has paid over $80,000 so far and I know how stressful any portion of that could be on any marriage. Just one more reason I knew 3 years ago Josh needed to take the job here in Salt Lake, but I didn't know exactly why until now. One more reason to stay in-tune...
#7: I love Taylor Swift. She wrote a song, Ronan, about a little boy who lost his fight with cancer. It's from the perspective of his mother, and it really is so beautiful. I honestly haven't even heard the song in its entirety because about 20 seconds in I'm crying so hard I can't hear anything else. Anyway, I read through the lyrics and my heart just breaks because almost all of it could have been written by me, word for word, and that scares me. JP's prognosis is really great, but there is still that chance I could lose him. I do try not to focus on the teensy tiny negative possibilities but sitting up at night thoughts go through your mind and you can't believe you're thinking them but they've already been thought, you can't unthink them. Maybe that doesn't even make any sense... I am in the works to see a professional (don't judge me - remember?) because even though I honestly think I am handling things well and am having normal reactions to my son's cancer diagnosis, I still should probably talk it all out with someone who knows how to handle it, if it needs to be handled. Anyway, where I am going with this is here: watch the video if you can (http://youtu.be/1ITrd7fM6aY), or read the lyrics below. So beautiful.
Sidenote: I always tell JP I love him to the moon and back and the other day - not to be outdone - he said, "Mom, I love you to the moon and Finn McMissile and back!" and smiled so proudly because he knew I couldn't top that. :)
Tonight I'm sitting next to JP while everyone else is sleeping because he decided to take a nap at 7:00 tonight, woke up just before 10:00 and now I'm just waiting for the first hint of sleepyness to hit so I can get him in bed. I know, I should not have let him sleep but if you were here, you would have known that I tried not to let him - I covered him in my sheet and blanket (he hates being covered in blankets when he's sleeping). Then we let Ralphie snuggle on top of him and the blankets and nothing. He was out. Cold. Oh well, at least he is sitting next me (and my thoughts), holding my arm, and randomly telling me how much he loves me in the quiet darkness of our living room.
A lot of my thoughts come from a month ago when I was at my high school reunion. We were asked to have one person from each table come up and tell one thing we've learned about life since graduation... of course I was nominated (prior to my knowledge of what I was about to have to do) and all I said was something along the lines of make sure you have good friends and family because when bad things happen they are the ones that will hold you up - vaguely referring to our journey with JP's cancer, of course. I should have used it as an opportunity to let people know about pediatric cancer and how grossly underfunded childhood cancer research is even though it is the #1 disease killer of children, the fact that 1 in 330 children will develop cancer before the age of 19 AND that 1 in 5 of those will not survive... How is it that children are put first in our society in everything except cancer research?? It's maddening, we need to get past the idea of marketing the hope of a cure and just fund the research that will give us cures! Of course that would have been better to have said, but obviously this is a little tender and I can't even type this post without the screen getting blurry.
Anyway, I've come up with a lot of things I've learned since high school, almost all of which I have actually learned/realized in the last 6 months, not 10 years. Here's my thoughts, don't worry, it's not all of them, in no particular order:
#1: Hug your kids and tell them you love them. Every day. You never know when that opportunity may be taken from you. Make sure they know how much you love them, even if they drive you bonkers.
#2: When you have a random thought about a friend/neighbor/family member, act on it. Bake them cupcakes or call them or whatever. You may be an answer to their prayers, sometimes prayers they didn't know they were saying. I can't tell you how many times someone has knocked on my door with dinner or an offer to babysit at the exact moment I was in need. I have been so amazed at how in-tune those around me are and that has made me want to be better and help others even more.
#3: Stop gossiping, judging or making fun of other people. You don't know what load they have been asked to carry or why they say and do the things that they do. We all deal with the same things differently and your way isn't the only way. My way is. (haha, kidding of course!) Walking the halls at Primary Children's Hospital has changed my perspective on basically everything. I feel guilt, anxiety, tremendously blessed, and love all at the same time. It's hard to explain, but I've found that if I can stop talking about others and start looking at how I can serve them or help their situation be better, I feel better about my situation.
#4: Sleep as often as you can. Or stop sleeping so much so you can be productive. I'm not really sure what my stance on sleep is.
#5: Let people help you. As hard as it is, if someone offers to help you with something, you should probably just let them do it. Or offer up something else they can do instead, because they will keep asking until you do. This is very hard for me, I'm a very independent lady who likes to just take care of things myself because I already know how to do it right OR I don't even know what I need so I don't know what to tell people... I'm still working on this - just today I received an email from someone I haven't spoken to in roughly a decade and they offered to do anything they could to help us out. This is a tough one, besides prayers and a cure for cancer I don't really know what to say.
#6: Medical bills can bankrupt anyone. I didn't realize how blessed we are compared to some families dealing with cancer because we have good insurance that is paying 100% of JP's treatments at this point. We met our max out of pocket pretty fast and now we pay a $25 co-pay every time we go to the doctor's and a co-pay for all our prescriptions, but other than that the insurance pays it all. I am blown away with how big of a blessing that is - our insurance has paid over $80,000 so far and I know how stressful any portion of that could be on any marriage. Just one more reason I knew 3 years ago Josh needed to take the job here in Salt Lake, but I didn't know exactly why until now. One more reason to stay in-tune...
#7: I love Taylor Swift. She wrote a song, Ronan, about a little boy who lost his fight with cancer. It's from the perspective of his mother, and it really is so beautiful. I honestly haven't even heard the song in its entirety because about 20 seconds in I'm crying so hard I can't hear anything else. Anyway, I read through the lyrics and my heart just breaks because almost all of it could have been written by me, word for word, and that scares me. JP's prognosis is really great, but there is still that chance I could lose him. I do try not to focus on the teensy tiny negative possibilities but sitting up at night thoughts go through your mind and you can't believe you're thinking them but they've already been thought, you can't unthink them. Maybe that doesn't even make any sense... I am in the works to see a professional (don't judge me - remember?) because even though I honestly think I am handling things well and am having normal reactions to my son's cancer diagnosis, I still should probably talk it all out with someone who knows how to handle it, if it needs to be handled. Anyway, where I am going with this is here: watch the video if you can (http://youtu.be/1ITrd7fM6aY), or read the lyrics below. So beautiful.
Sidenote: I always tell JP I love him to the moon and back and the other day - not to be outdone - he said, "Mom, I love you to the moon and Finn McMissile and back!" and smiled so proudly because he knew I couldn't top that. :)
Ronan
I remember your bare feet down the hallway
I remember your little laugh
Race cars on the kitchen floor
Plastic dinosaurs, I love you to the moon and back
I remember your blue eyes looking into mine like we had our own secret club
I remember you dancing before bed time then jumping on me waking me up
I can still feel you hold my hand
Little man, from even that moment I knew
You fought it hard like an army guy
Remember I leaned in and whispered to you
Chorus:
Come on baby with me
We're gonna fly away from here
You were my best four years
I remember the drive home when the blind hope
Turned to crying and screaming, "Why?"
Flowers piled up in the worst way
No one knows what to say about a beautiful boy who died
And it's about to be Halloween
You could be anything you wanted if you were still here
I remember the last day when I kissed your face
I whispered in your ear
Come on baby with me
We're gonna fly away from here
Out of this curtained room in this hospital
We'll just disappear
Come on baby with me
We're gonna fly away from here
You were my best four years
What if I'm standing in your closet trying to talk to you?
What if I kept the hand me downs you won't grow into?
And what if I really thought some miracle would see us through?
But what if the miracle was even getting one moment with you
Come on baby with me
We're gonna fly away from here
Come on baby with me
We're gonna fly away from here
You were my best four years
I remember your bare feet down the hallway
I love you to the moon and back.
I remember your little laugh
Race cars on the kitchen floor
Plastic dinosaurs, I love you to the moon and back
I remember your blue eyes looking into mine like we had our own secret club
I remember you dancing before bed time then jumping on me waking me up
I can still feel you hold my hand
Little man, from even that moment I knew
You fought it hard like an army guy
Remember I leaned in and whispered to you
Chorus:
Come on baby with me
We're gonna fly away from here
You were my best four years
I remember the drive home when the blind hope
Turned to crying and screaming, "Why?"
Flowers piled up in the worst way
No one knows what to say about a beautiful boy who died
And it's about to be Halloween
You could be anything you wanted if you were still here
I remember the last day when I kissed your face
I whispered in your ear
Come on baby with me
We're gonna fly away from here
Out of this curtained room in this hospital
We'll just disappear
Come on baby with me
We're gonna fly away from here
You were my best four years
What if I'm standing in your closet trying to talk to you?
What if I kept the hand me downs you won't grow into?
And what if I really thought some miracle would see us through?
But what if the miracle was even getting one moment with you
Come on baby with me
We're gonna fly away from here
Come on baby with me
We're gonna fly away from here
You were my best four years
I remember your bare feet down the hallway
I love you to the moon and back.
That's enough of my emotions for one night. Thanks for "listening."
Sunday, September 9, 2012
Interim Maintenance II - Day 1
Sorry for the delay in posting and for not having any beautiful pictures to share. Turns out I've met my 1 GB max in free blogger space (yes - ONE GB) that Google allows so until I export my family blog I will just not be able to post pictures! Silly Google, just give me 2 GB for free! haha
Anyway, JP met counts on Monday, September 3rd so we went in to start phase 5 - Interim Maintenance II - on Thursday, September 6th. Day 1 consisted of Vincristine, 2/3 the highest dose of Methotrexate he tolerated in phase 3 through his port and more Methotrexate into his spinal fluid with a lumbar puncture. He did great - he woke up from his LP the happiest I think he ever has, which was a delightful surprise considering he had his hardest day last time he had an LP. We mentioned that we had Goldfish crackers and that we could go see Superman and he sat straight up. Yes, not only does Primary Children's have a Spiderman statue, but we also found Superman! He is much more muscular than Spiderman so JP was a little aprehensive, but still managed a smile for the picture.
We enjoyed a neighborhood bbq on Friday night and I woke up with a sore throat on Saturday morning. Of course I did! We've been so careful not going anywhere and have basically locked ourselves up in the house for 2 months - 500 square feet the entire summer - and we figured he was acting ok and had a 900 ANC on Monday so we tried it. So far he's ok, but I'm the mom taking care of him so I think it's only a matter of time before he gets my cold. I blame it on Elsie - she's had a runny nose for a few days (and isn't cutting teeth) so she must already be sneaking out at night to hang out with the cute boys down the street. It's the only logical explanation! JP did fever up to 100.2 on Saturday but never got higher so we're keeping our fingers crossed. And I'm constantly sanitizing my hands and not breathing near him. We'll see how things go the next few days. I did take some NyQuil last night and had a really hard time waking up... and I mean a really hard time! I wasn't making sense, I couldn't think straight, and I was mostly out until 11:15 this morning. I did, however, manage to get up with Elsie at 8:00 and put her back down for her nap at 9:30 but I don't think I was awake for most of that... Not sure if I'll be doing that again!
I will work on cleaning up my blog so we can post cute pictures soon. :)
Anyway, JP met counts on Monday, September 3rd so we went in to start phase 5 - Interim Maintenance II - on Thursday, September 6th. Day 1 consisted of Vincristine, 2/3 the highest dose of Methotrexate he tolerated in phase 3 through his port and more Methotrexate into his spinal fluid with a lumbar puncture. He did great - he woke up from his LP the happiest I think he ever has, which was a delightful surprise considering he had his hardest day last time he had an LP. We mentioned that we had Goldfish crackers and that we could go see Superman and he sat straight up. Yes, not only does Primary Children's have a Spiderman statue, but we also found Superman! He is much more muscular than Spiderman so JP was a little aprehensive, but still managed a smile for the picture.
We enjoyed a neighborhood bbq on Friday night and I woke up with a sore throat on Saturday morning. Of course I did! We've been so careful not going anywhere and have basically locked ourselves up in the house for 2 months - 500 square feet the entire summer - and we figured he was acting ok and had a 900 ANC on Monday so we tried it. So far he's ok, but I'm the mom taking care of him so I think it's only a matter of time before he gets my cold. I blame it on Elsie - she's had a runny nose for a few days (and isn't cutting teeth) so she must already be sneaking out at night to hang out with the cute boys down the street. It's the only logical explanation! JP did fever up to 100.2 on Saturday but never got higher so we're keeping our fingers crossed. And I'm constantly sanitizing my hands and not breathing near him. We'll see how things go the next few days. I did take some NyQuil last night and had a really hard time waking up... and I mean a really hard time! I wasn't making sense, I couldn't think straight, and I was mostly out until 11:15 this morning. I did, however, manage to get up with Elsie at 8:00 and put her back down for her nap at 9:30 but I don't think I was awake for most of that... Not sure if I'll be doing that again!
I will work on cleaning up my blog so we can post cute pictures soon. :)
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