So, there are a lot of nights when ViviAnne will wake up around 3 and stay awake for an hour. And since I am usually in bed with her already from her 11PM wake up she wants to talk, I know shocker.
This morning was a talk I allowed her to have and didn't once ask her to please be quiet and go back to sleep. She started telling me that she did not want to match her Papa any more that she wanted to match me again. (Her hair.) She said she was so beautiful when we got her hair cut like mine (back in August) and she wanted to be again. I assured her she IS beautiful and that her hair is growing back and she and I will match again. Then she started to tear up and she yanked her sleeping hat off and said very sternly, "no it is not! Look! I don't have my blonde hair yet! I look like Papa! And he said we need to match and I don't want to get my hair cut tomorrow!" She said she heard Papa say that she was going too when we take Cooper an Brent to get hair cuts on Saturday and she thought she would be getting her hair cut as well. So I pulled out my assuring mommy tone and said, "I make the decisions on your hair, not Papa, and I say we will not be getting your hair cut tomorrow and you will not and do not match Papa any more. We are going to grow your hair long and you will match me." She dried her little eyes and said, "Okay, thanks. Yeah, Gramma makes the decisions for Papa so we'll just tell her that I'm not gonna match him any more." Then she gave me a hug and said, "I love you. Can you hold me?" And of course I did.
What a discussion to have with a three year old at 3AM! She was so articulate in her thoughts. She never was stumbled on her words or got worked up into a scream. For a moment I felt like I was talking to a 13 year old not a 3 year old. Well, atleast no one has to wonder how she feels on the matter. She is OVER not matching me.
Sunday, March 22, 2009
Monday, March 16, 2009
8 months and 1 day
That is how long ago ViviAnne was diagnosed with ALL. I can't believe it has been that long. I can barely remember life before cancer. Cooper was only 17 months old when she was diagnosed and now he is full fledged 2. ViviAnne could not express to me exactly what hurt just that she hurt. Now she tells me, "my tummy hurts". MAN 8 months changes A LOT.
I thought back to when ViviAnne was 17 months old and a colic and reflux filled Cooper entered our lives. He never slept and rarely was calm. He remained like this for 6 months. So I barely remember ViviAnne changing from that sweet little 17 month old baby into a sassy strong willed 2 year old. It just happened. Now here I am again. I can not remember Cooper either from 17 months to 2 years old. ViviAnne was the demanding one this time. My hope is that one day I will lead a life where my entire family sleeps through the night all at one time. That both of my children will be healthy and active and I won't live in fear of germs, ports being damaged or strange bruises. Oh what a difference 8 months makes.
This weekend she did okay. Yesterday her eyes looked dark and she seemed a bit tired but she fought off a nap like a normal 3 year old. Today however she asked to take her nap at 12:30. Wanted jammies to be comfy in and everything. Those steroids and Vinchristine just knock her out for about 4-5 days. But at least she can get some rest. Her moods are not quite as bad this time. Well, the swings aren't as often I should say.
Spring is coming! I will be glad to let the kiddos ride their bikes and play outside. And so will they. ViviAnne has been telling everyone the past couple of days that, "this weather is crazy! It is supposed to be warm so we can play outside! Silly weather." Cooper made up a song. It is The Papa song. And well that is the whole song just sang at different intervals and pitches with arms stretched up to the sky. The boy LOVES his Papa. So at least there are some things to smile about. I'll take them when I can.
I thought back to when ViviAnne was 17 months old and a colic and reflux filled Cooper entered our lives. He never slept and rarely was calm. He remained like this for 6 months. So I barely remember ViviAnne changing from that sweet little 17 month old baby into a sassy strong willed 2 year old. It just happened. Now here I am again. I can not remember Cooper either from 17 months to 2 years old. ViviAnne was the demanding one this time. My hope is that one day I will lead a life where my entire family sleeps through the night all at one time. That both of my children will be healthy and active and I won't live in fear of germs, ports being damaged or strange bruises. Oh what a difference 8 months makes.
This weekend she did okay. Yesterday her eyes looked dark and she seemed a bit tired but she fought off a nap like a normal 3 year old. Today however she asked to take her nap at 12:30. Wanted jammies to be comfy in and everything. Those steroids and Vinchristine just knock her out for about 4-5 days. But at least she can get some rest. Her moods are not quite as bad this time. Well, the swings aren't as often I should say.
Spring is coming! I will be glad to let the kiddos ride their bikes and play outside. And so will they. ViviAnne has been telling everyone the past couple of days that, "this weather is crazy! It is supposed to be warm so we can play outside! Silly weather." Cooper made up a song. It is The Papa song. And well that is the whole song just sang at different intervals and pitches with arms stretched up to the sky. The boy LOVES his Papa. So at least there are some things to smile about. I'll take them when I can.
Saturday, March 14, 2009
Counts are Up!
Written by Mommy
I took ViviAnne to the clinic on Friday morning to check counts and try to resume chemo. AND WE DID!!! Her counts were up to 1700 and she was looking good. She wakes up early on clinic days, just the anticipation of it I suppose. This clinic day she woke up at 4:30 AM! That is right 4:30 in the morning talking and ready to go. I of course was not soooo it made for a very long day!
She did wonderfully as usual. She explained to a nursing student that the reason she comes to the clinic is because she has cancer. It tears my heart apart everytime I hear her say that. She sat and chatted and made a building with blocks telling the nursing student about her port, Cooper, my rib breaking and me not being able to hold babies and on and on. She is always pretty easy to chit chat one on one with a woman.
Then we were off to the hospital to visit C.J. I had explained to ViviAnne that C.J. now has cancer too and he has a port and will be going to the clinic to see Dr. Ayyanar. She responded with "that's crazy!" I then explained that he too would be getting his port done by Francis (ViviAnne's FAVORITE nurse) and she then got this very serious look on her face and said, "No, not Francis I don't want to share Francis".
C.J. looked good. He was still nervous when we first walked in but once he figured out we weren't there to poke him or listen to him he sat up and smiled and teased his Mommy. It was nice to see him smile! ViviAnne brought him a sucker and he shared some chewies with her. It is great that they have one another. Crappy that it has to be like this.
Oh yeah. Friday Morning Cooper was supposed to go spend the day at Papa's shop because Kim was going with ViviAnne and I to the clinic. WELL he was sick. So Brent stayed home with him and played "Catch the vomit". I personally think he is a hero for taking on that job. Cooper wants his Daddy when he is sick though. They are snuggle buddies. Brent said the first vomit played out like this. He and Cooper were laying in bed, snuggling of course, when Cooper looked over at Brent and said, "Oh no!" Brent grabbed a towel to catch it just in time for Coop to throw up on Brent's arm. Poor guys! Needless to say we kept ViviAnne and Cooper seperated for the day. At around lunch time Cooper turned the corner and has been fine ever since.
I am trying to think positive. The weather is supposed to warm up and so my kids will get healthy and we can get back to a normal life until counts drop again which will hopefully not be for a very, very long time.
Tuesday, March 10, 2009
Special Prayers
On a very serious note:
This horrible disease has struck another member of my extended family. My cousin Greg and his wife Sheree are tending to little CJ at Kosairs this week. CJ is about 8 months older and ViviAnne thinks the world of him. He was just diagnosed with A.L.L. also. The protocol is little tougher on boys. So please place them in your prayers.
I have asked Stacey to remove the ChipIn widget from our blog. If you still feel inclined to show your support, please consider contributing to CJ's Treatment Fund. We have been truly blessed by all of your love and support and will be making every attempt to pay it forward.
Stacey has created a similar blog for CJ.
http://bravecj.blogspot.com/
Thank you all.
Brent
This horrible disease has struck another member of my extended family. My cousin Greg and his wife Sheree are tending to little CJ at Kosairs this week. CJ is about 8 months older and ViviAnne thinks the world of him. He was just diagnosed with A.L.L. also. The protocol is little tougher on boys. So please place them in your prayers.
I have asked Stacey to remove the ChipIn widget from our blog. If you still feel inclined to show your support, please consider contributing to CJ's Treatment Fund. We have been truly blessed by all of your love and support and will be making every attempt to pay it forward.
Stacey has created a similar blog for CJ.
http://bravecj.blogspot.com/
Thank you all.
Brent
Update from Daddy
Update from Daddy
Well it has been a week since our last update. I take the blame for that as it appears that I am the last one standing.
To recap:
2/19 Cooper – Pediatrician: RSV
2/22 Cooper – Hospital: Puncture Wound
2/23-2/26 ViviAnne - Hospital: Fevers & RSV
2/28 ViviAnne - Pediatrician: Counts
3/03 ViviAnne – Clinic: Counts to low No Treatment.
3/04 Kristen – Hospital: Broken Rib
Yes a broken rib! I swear God is looking down and cackling “Dance Monkey!!!”
She had been coughing for 4-5 weeks continually getting RSV I suppose (see above). Her side had been sore for a few days like a pulled muscle. Then Kristen called me at work muffled and crying “Can you come home...I coughed...something popped...I hit the floor and can't move.” I said “Maybe Later”...not really. I rushed home. Cooper met me at the top of the stairs naked from the waste down. ViviAnne said "Daddy hurry something popped out of Mommy." I find Kristen laying on her side positioned like the statue of liberty between the bed and the dresser. Her cell phone in her hand. Cooper's toy cellphone laying at her head. Evidently I missed a pretend 911 call from ViviAnne telling me that Mommy was down and I needed to come home right now. Followed by a “Yeah” “Okay” and “Don't worry Mommy daddy is on his way.” As I came around to her side I stepped into a pile of lotion in the carpet which brought to my attention that she was covered in lotion. All hell had evidently broken lose on my way home. Kristen couldn't move to fight them off. They doused her in lotion to help the pain, ViviAnne rushed and made a Get Well Card, Coop pee'd himself and even worse cleaned it up himself. It was like “Lord of the Flies” in my bedroom.
A very special thanks to Mom and Stacey for ridding us of kids for a few days so she could start to recover. Kristen is moving a round a bit better this week. I think she over did it today though. She looked to be in a lot of pain when I got home from work.
To say the least I'm walking on egg shells constantly wondering what is going to get me. Will it be one of the branches from the ice storm still dangerously looming at the top of the tree, or maybe something as random as a low flying bird, maybe bird-flu, or restless leg syndrome.
I'm due.
Well it has been a week since our last update. I take the blame for that as it appears that I am the last one standing.
To recap:
2/19 Cooper – Pediatrician: RSV
2/22 Cooper – Hospital: Puncture Wound
2/23-2/26 ViviAnne - Hospital: Fevers & RSV
2/28 ViviAnne - Pediatrician: Counts
3/03 ViviAnne – Clinic: Counts to low No Treatment.
3/04 Kristen – Hospital: Broken Rib
Yes a broken rib! I swear God is looking down and cackling “Dance Monkey!!!”
She had been coughing for 4-5 weeks continually getting RSV I suppose (see above). Her side had been sore for a few days like a pulled muscle. Then Kristen called me at work muffled and crying “Can you come home...I coughed...something popped...I hit the floor and can't move.” I said “Maybe Later”...not really. I rushed home. Cooper met me at the top of the stairs naked from the waste down. ViviAnne said "Daddy hurry something popped out of Mommy." I find Kristen laying on her side positioned like the statue of liberty between the bed and the dresser. Her cell phone in her hand. Cooper's toy cellphone laying at her head. Evidently I missed a pretend 911 call from ViviAnne telling me that Mommy was down and I needed to come home right now. Followed by a “Yeah” “Okay” and “Don't worry Mommy daddy is on his way.” As I came around to her side I stepped into a pile of lotion in the carpet which brought to my attention that she was covered in lotion. All hell had evidently broken lose on my way home. Kristen couldn't move to fight them off. They doused her in lotion to help the pain, ViviAnne rushed and made a Get Well Card, Coop pee'd himself and even worse cleaned it up himself. It was like “Lord of the Flies” in my bedroom.
A very special thanks to Mom and Stacey for ridding us of kids for a few days so she could start to recover. Kristen is moving a round a bit better this week. I think she over did it today though. She looked to be in a lot of pain when I got home from work.
To say the least I'm walking on egg shells constantly wondering what is going to get me. Will it be one of the branches from the ice storm still dangerously looming at the top of the tree, or maybe something as random as a low flying bird, maybe bird-flu, or restless leg syndrome.
I'm due.
Wednesday, March 4, 2009
Quick Update from Mommy
I took ViviAnne to the clinic today. Her ANC dropped to 500! So more home bound for us! I am very upset by this. Too upset to even express my emotions. I need to sit and be quiet to sort them all out. But as you can imagine I don't get many opportunities for that.
I will tell everyone this; she will not resume chemo until March 13th if her counts are up by then. A full 2.5 weeks with no chemo!!! Not a good thing in my book. She complains about her knees and back hurting here and there too. I'm nervous and scared and mad and AAAGGGHHH!!!!! That is all I can say for now.
I will tell everyone this; she will not resume chemo until March 13th if her counts are up by then. A full 2.5 weeks with no chemo!!! Not a good thing in my book. She complains about her knees and back hurting here and there too. I'm nervous and scared and mad and AAAGGGHHH!!!!! That is all I can say for now.
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