Monday, October 24, 2011

1 Year Update

Well, she's been cancer free for 1 year and 1 month. She does not have to go back to the clinic for another 4 weeks. They moved her to an every 8 week check up schedule. She is doing fabulous at school and for the most part you'd never know she fought for her life. She talks about it from time to time. She has made it clear that she thinks cancer is yucky, she does NOT want to do chemo again and she's even said she wishes NO ONE would ever have to go through chemo. She's asked the hard question as to why and I answered her as best as I could. Like I've said before, there is no answer to the "why" question that is a good enough answer.

So, she is doing good and we as a family still seem to be okay. There are days I wonder if all the unspoken hurts and disappoints will haunt us forever or if we'll be able to forgive and forget and move on. I guess time will tell.

Thursday, September 22, 2011

Anxious. Very Anxious.

ViviAnne goes to her one year check tomorrow! She has been seen every 4 weeks since her last Vincristine push on September 25, 2010. We're here. She made it to a year. After tomorrow's appointment they will only see her once every 8 weeks. She will be glad to have this larger space between appointments. Last time she asked me how much longer she was gonna have to keep doing this. She became a patient at the clinic May 2008. She is a bit spent with it all. Trying to explain it to a 6 year old who doesn't remember not going to these doctors but still knows she doesn't want to miss school to go visit them is difficult. She'll get it one day.

So I said Anxious in the title of this post because I am! Last week I started to get this feeling of dread in me. One I've felt before. The feeling that something bad is coming. Something, but what?!?! Was it that Brent had a hard day at work? Is it finances stressing me and leaving me feeling hopeless? I push back to the back of my mind that it is NOT the return of Cancer! Its NOT!!! She is fine and as I type that I can honestly say I half way believe it. This past year I've believed it. I had a scare but figured out she can get a fever and it will be fine. But this is different. The knot that was in my stomach all this week and half of last week is now in my throat! This was not a feeling I was expecting to have. I wasn't expecting to have any feelings honestly. I was expecting to truck right along with this appointment as I have the past 6. Routine check up and then on with life. I'm not though. I wish it were finances or something else giving me this dread. Not cancer. ViviAnne is ALIVE and HAPPY and SMART and WONDERFUL and I'm sitting here about ready to throw up! Ugh. It is gonna be a long day and night and then after tomorrow when they tell me she is still cancer free I hope the 8 weeks between appointments don't bother me. I hope I just truck right along. Ugh

Please pray for a family. Jeremy Bartlett lost his fight to ALL yesterday. He was 19. His mother really needs prayers. Her mother passed away yesterday afternoon too. If I am remembering correctly Jeremy was diagnosed a couple months after Viv. When I found out last night about him getting his wings my heart hurt. Really hurt. To fight for so long and be so young. It is never fare. Nothing about Cancer is fare. Everyone who has ever fought or is still fighting has people that love them and don't want to see them endure the pain. Everyone has a story. Love and prayers to Paula and others out there hurting from Cancer.

Saturday, August 27, 2011

11 Months and counting

Well, she is 6 and has 3 less teeth than she started the week with! We also had a clinic visit on Friday. Her WBC's and ANC were higher than usual for her. Not too high like out of the normal range but high for her. Now, this is more than likely attributed to all the gunk her allergies are causing her to fight so we are not at all concerned that her norms are higher than her norms. Does that make sense? Also this means she's is 1 month away from celebrating 1 year cancer free!! The Docs say that after reaching your first year marker your chances for relapse decrease. No I don't know by how much nor do I know what her chances percentage wise WERE to relapse these past 11 months. I don't see the point in knowing these statistics, they get me NO WHERE. I can't stop the cancer from coming back no more than I could stop the cancer from happening in the first place!! "It is what it is." So I find no real comfort in the fact that she is reaching her year maker as being somehow "safe". Nor do I sit around and dwell on the what ifs or wring my hands with worry or make up statistics in my head just to "make it all better". Cause that is not who I am. I'm not a stick my head in the sand kind of a person nor am I a make crap up so that everything will be all better kind of a person. Tell me what I'm dealing with when I'm dealing with it and I'll do it. I'm not gonna borrow trouble nor am I gonna ignore it or sugar coat it.

Don't take any of that as me being somehow ungrateful that she is 11 months cancer free cause I am NOT ungrateful. I thank the Lord every day for my kids and their health and their LIVES!!! I am very grateful!! I am just real about it. The percentage of this or that happening means nothing to me. I am trying to live a healthy life physically and spiritually and mentally and I am trying to raise my kids to be healthy in those ways too. That is the best we can do. The rest is out of our hands. Let me see if I can break down my thoughts on statistics when it comes to cancer. A doctor told a friend of mine something to this extent (it is not verbatim).....if you make it cancer free for 5 years your chances of living longer without cancer increases than if you only make it 3 years cancer free. WHAT?!?! Yeah, you just lived cancer free for 5 years rather than 3, you just lived 2 more years of cancer free!! Now, I realize he could have meant your chances after beating cancer for a second time but still, the way the stats are presented and manipulated just render them useless to me.

I have complete peace that ViviAnne is fine and cancer free tonight and will wake up tomorrow in the same exact cancer free place. The rest is outta my hands. Thank goodness!!!

SO, she is 6 and Cancer Free and this year life is far less stressful than it was last year and the year before that AND the year before that!!

Monday, August 22, 2011

Time Flies

WOW! This summer went by fast! I can not BELIEVE that ViviAnne is in Kindergarten!!! She is also gonna be 6 this week!!! MAN! She has grown up so fast!

I was thinking the other day while I was making the bed, cause that particular task does not take a lot of brain power, how people kept telling me that if I could just hang on during treatment that I would get my baby back. I pondered that statement, and have many times, usually coming up with the fact that I"m angry because I didn't get her back! I have had to re learn her and I've had to forgive myself for the times I didn't realize it was the drugs and just over all feeling like crap that caused her to behave a certain way. Anyway, this day while making the beds and pondering I realized that in reality getting her back was not truly ever an option for us. She was 2 when she was diagnosed. She was 5 and a half when the drugs were supposed to be gone and she'd "come back". But the fact of the matter is she did in fact grow and change and came out the other side a different person. We all did. So I really shouldn't be angry that I didn't get her back. I should be thankful that she is who she is and that she is this little tender hearted, mothering, smart girl who has an old soul and who is very intuitive. So intuitive! She can read a situation and understand it on a level that other kids her age can't. It sometimes makes the social aspect of her life harder but as a friend of mine pointed out that gift of hers will be a great asset as an adult and teenager which is really what is important!! It's the long haul to look at not the immediate.

She is so amazing! She watches out for her brother and he loves to be with her. He is so sweet! Sweet and funny and I love the fact that they have a bond that is so strong!!

Our little family is growing and finding our way and I have a strong faith in the fact that we will be strong and wonderful for many years to come, regardless of what else gets thrown at us. It is like Brent told our kids, we believe that God is in control of our lives and will always do what is best for us so in reality we don't need to worry, cause God is in control!!

"God's way is perfect" Psalm 18:30

Sunday, July 17, 2011

3 Years Later

Three years ago we were thrown into the cancer world on July 15th. Each year around this date we get a little anxious. It just kind of happens. This year we spent the day just like any other day. I wondered how it would feel this year considering ViviAnne is no longer in treatment. I wondered if I would be upset or anxious again. I didn't feel like I would be. I wondered if by going to Chicago with ViviAnne, Grandma and Aunt Stacey I was some how ignoring this anniversary. Almost like doing it an injustice considering Brent and Cooper would be without us. But, I just rolled with it. So off we went to Chicago while Daddy and Coop stayed home and camped and fished and spent some good "MAN" time together while us "girls" took in the sites in Chicago! And I'm sooo gland I did!!!

Chicago was great! ViviAnne was so good. She walked and walked Michigan Avenue with us and took an hour and a half Architecture Boat tour without complaint. Considering her time to the American Girl Doll Place was not until the second day of our trip she did great behaving!! It was wonderful to enjoy her and see what a big girl she is becoming. I thought about how far she's come in the past 3 years. How much she has changed and endured and came out the other side of it smart, sweet and tender hearted. Now, she is still incredibly head strong and a handful at times but I have to remind myself that this fight that is naturally inside of her has been a blessing for her. The fight and do not back down stance she takes with me is the exact kind of character she needed to beat cancer. To not fear it but take it head on! And this is who she is! And I love her for all of it!!!

So we have another big milestone to celebrate this year during this time of year. Her very FIRST tooth came out!! No taking in heavy doses of chemo and steroids but rather losing a tooth was her reality this year! I pulled it for her and she was amazed at how some thing that could bleed like that did not hurt. She has a proud smile showing off the hole in her teeth!

Three years have past and I can honestly, HONESTLY say that we are a joyful home. I gave good lip service to us being fine but the truth was we were as fine and as happy as we good be. I just need to learn to accept the feelings for what they are/were and not put so much pressure on myself and my family to be a certain way. But I have been trying to let that go and when I think about it we are joyful and happy just the way we are. With all of our noise and mistakes and fears I wouldn't really change much about us, or our past. It has made us, us. I can sit around and wish cancer hadn't happened to my baby but it did. It is what it is. We are moving on. We still carry our scares and I still can't look at pictures of the past but I'm not gonna beat myself up about any of that. It is what it is. And I'm not gonna feel guilty that this past week wasn't some how "memorialized" as it has been in the past. It didn't phase me and I think that is a good thing.

So she is gearing up for Kindergarten and she is full of nervous and excited feelings. My job is to help her deal with those feelings and experiences. It will be new and a challenge but we'll figure it out and learn as we go just like we did with cancer.

Happy Summer!!

Tuesday, June 21, 2011

Summer Days and Giving Back

Well, we have kicked summer off in our house in a new way. We are all healthy and hospital free. I have found a new enjoyment of working in the yard and I am even trying my hand at a small veggie garden. ViviAnne and Cooper are getting to the ages that they can be outside with me and be trusted to not dart into the street or wander off and they love looking at the tomato and pepper plants too!! Now that I've explained to ViviAnne to not pick the pretty yellow flowers off of the tomato plants. :) So between the yard work, the thunder storms and the pool we are having a pretty uneventful summer so far. I'd say the kids are border line bored. But I'm loving it!!! Oh yeah! We are doing play dates too!!! This is a new ground breaking thing for us! Play dates that we can keep AND best of all I do not have anxiety attacks about them!!! BONUS!

ViviAnne has been the honored Girl of the Year for the Leukemia Lymphoma Society for a fundraising campaign they do each year. She was on a local television news show and said "Thank you" into the microphone in front of about 200 people at the final event. She is learning to speak to adults at these functions and behave appropriately. Honestly, she does a wonderful job with all the attention at those kind of things. It takes about 30 minutes to get warmed up to the idea of lots of adults talking to her and wanting her picture taken with them but once she gets used to it she is all smiles and high fives and giggles. She really does great! We are trying to teach her that now is our time to give back! To show our love and support to other Cancer Fighters out in the world like people did for us. To teach her that it is not all about her any more. (I'll admit, the later is harder to teach.) But parenting is a marathon, this is something I have to remind myself. She may "get it" one moment and then not the next. Of course, adults are that way too.

OH, she also is getting involved in the American Girl Doll fundraising for Kosair Hospital. It is a group of women and girls who do things all American Girl Doll themed and raise money for the hospital. She went to a day at a horse farm to ride ponies and learn how to groom them and even painted one all while being in the theme of the American Girl Doll, Felecity. She loved it! We will do another event this fall. The money will go to build pods for the NICU at Kosairs. Trying to make the families feel more private while they struggle with their new babies who are struggling.

So, the giving love side of this cancer journey is exciting. I feel a great sense of responsibility to give it all back/pay it all forward! To say thank you to everyone who prays, gave money, sent food and/or cards or just read the blog to check on us. Banding together is what it takes. And many times families don't get that. They either don't live near family or for one reason or another it just doesn't happen. That is another part of LLS and Kosair that many people don't realize. They help the families who are need of help when no one else can. I'm seeing and hearing more and more how the donation dollars make a difference. And I'm finding the deeper understanding of how blessed we really have been. I've known it but now that the clouds are lifting I'm understanding it on a deeper level.

I hope everyone is enjoying their summers!!

Matthew: 25: 34-36, 40
34Then the King will say to those on his right, 'Come, you who are blessed by my Father, inherit the kingdom prepared for you from the foundation of the world. 35For I was hungry and you gave me food, I was thirsty and you gave me drink, I was a stranger and you welcomed me, 36 I was naked and you clothed me, I was sick and you visited me, I was in prison and you came to me.' '. . . . 40And the King will answer them, 'Truly, I say to you, as you did it to one of the least of these, my brothers, you did it to me.'

Sunday, May 1, 2011

Medals 4 Mettle

This weekend has really been something else. I know for many it would seem like just a normal, whatever weekend. But for me it was great! You see I have for the past, oh I don't know, 4 months or so been just mad!!! I feel like something is missing and I don't know what it is and I live up around an 7-8 on freak out level. Which before cancer was not me at all. I was pretty laid back. But now I'm the one people have to walk on egg shells around. Is she okay today or has she been on the brink of freak out most of the day? Who knows? I don't usually. My friends at Gilda's Club told me they think the reason I have such a feeling of unrest and anger is because cancer is gone. Huh? Then they explained. I lived for 3 years with a sick kid. The minute I let my guard down she would get knocked back down and in the hospital. The shoe always dropped on me. And NOW the shoe is not dropping but yet I'm still on edge waiting for it to. Even though I talk the talk of we are fine, I don't truly believe it to be so. Which to a big extent I agree with them. Thanks ladies for shedding some light on the subject. I can let my life be drama free as I like it and it will be okay. This too will take some time to adjust but I'll get there.

Anyway, I told you all that to tell you this. Saturday was the Mini Marathon in Louisville for the Kentucky Derby festival. Kim, Brent's mom, walked it and some other friends walked and ran it. ViviAnne on the other hand was not able to go watch because she had dance pictures!! So fun! We did make-up and full dress for her upcoming ballet recital. She missed her pictures last year from being too sick and in the hospital. Then she and I hung out with my Mom for a bit and then when we got home the kids and I were outside for 5 hours straight!!! Playing with the neighbor and working in the yard and both the kids played in the hose and were wet down to their undies!! It was great!! They were great!! No big fights only one freak out from Viv but it was very short and I kept my cool with the whole thing! (This is HUGE for us!) It was just a great day!!! And we were exhausted from all our play!!

Sunday I woke up feeling horrible!! Brent even commented that I looked like I was about to throw up and might wanna lay back down and not worry about the dirty kitchen, the dishes aren't going anywhere. Is this my husband? But I really did feel like crap. The kids were kinda grouchy but not terrible and we had a Medals 4 Mettle Awards ceremony too. Now neither Brent nor I really wanted to go. But I had told the ladies at the clinic we would be there. Medals 4 Mettle is when a U of L medical student trains and runs the Mini Marathon in honor of a Pediatric Cancer patient and then gives their Medal to the patient. Last year Viv never got to do this because she was too sick and in the hospital. But even though Brent and I really didn't want to go we went anyway. And I am so glad we did!! We heard Dr. B, the head of the clinic, speak about how important he thinks it is that these young aspiring doctors put faces, names, and reality to the diagnosis they are learning about in textbooks. That they learn first hand the PEOPLE that go with these diseases and their fights and see their courage first hand. To GIVE BACK to their fellow man! How awesome he is to be trying to instill this in his students. We heard from student runners, a Mom of a patient and from a 14 year old boy who is a patient and what Medals 4 Mettle meant to him. It was great! I am so thankful we did it. Because this is what is about for me now. Giving it back, paying it all forward. And I need/want to get to that state of mind on a more consistent basis.

When we got home ViviAnne said she was so excited for her "Graduation at school". You see, this time last year she was already pulled from school. She missed out on all of May and most of April so she never got to make the secret Father and Mother gifts or learn the graduation songs or do the Stick Horse Derby races and there was no end of year picnic for her. She just left school one day and never went back. She was in the hospital, and too sick when she got out too. Are you picking up on the trend here? This time last year Viv was in the fight, I mean really in the fight. Transfusions and relapse and transplants were all swirling around us. She remembers watching the Derby fireworks from the hospital window but nothing of school stuff. All last week I could tell she was so excited to go to school. She would be fully dressed and by my bed at 6:30 AM!! I knew they were doing fun stuff but hadn't thought that she would remember that this was all stuff she missed out on.

So the month of May is crazy for us. We have stuff all through the month. And as annoyed as Brent is with it all, he is so busy with work this extra stuff is stressful, I'm trying to just take it all in. Take it all in and run with it. Not get stressed and pissy. Not get short tempered or have anxiety attacks. But rather remember how thankful I am and should be that she is here this year! Here and not still fighting!!! Here with great counts (had them checked Friday) and excited to be a 5 year old Graduating from Pre-K! And I can cry because she is growing up. Even though the tears are mixed with tears of anxiety for fear that cancer will return too soon, thankfulness that she was spared and is still here with me, happy that she gets to live a 5 year old life outside of a hospital and wonder at how she can still bring people to their knees with her honesty and verbal skills! And that is all okay.
I'm trying to learn to accept for emotions, have them and then move on.

So as we enter Derby week I'm going to try to live in this moment. Show my thankfulness that she is here and not where we were last year and thankful that she didn't lose her fight. Live my thankfulness and smile and run and play and just be. I've tried to be present in the moments of my kids lives and I think these past 4 months I didn't do so hot. I was too wrapped up in my own anxiety and crap inside myself. The negative talk started to over take me again and being there at Medals 4 Mettle today I was reminded to stop it. To embrace my life even though it didn't play out like I thought it would. Even though I feel and know we are a lucky one I need to live that feeling!!! To give back to those around me. Cause the ones around me the most are little and looking up to me to guide them. And I don't want to guide them with all this anxiety. It is like I say to my children, "it's not always all about you." Well, it's not all about me either.

Happy Derby!!

Tuesday, April 19, 2011

Spring Pictures

Stacey took some pictures of the kids.
These are pretty representative of how they are. Viv has a softness about her and Coop is a mover and a shaker. Hope everyone is having a great Holy Week!

"I am with you always." Matthew 28:20,

Tuesday, April 12, 2011

Cast off

Today is the day the cast comes off! She is excited about it and, to tell you the truth, so am I. Over the past 5 weeks she did figure out how to do things with one hand or at least use the fingers that stick out of her cast but the cast slowed her down. Which is amazing considering she is a pretty slow moving person to begin with! I really took for granted what it was like to have a 5 year old who has no mobility issues. A simple arm break helps to remind me how fortunate we are to have such healthy kids.

On the topic of health, last week was Spring Break. Both the kids had a G.I. Bug. Not at the same exact time but back to back from one another. So the ENTIRE week we had to stay close to home and a bathroom. Thankfully our kids are young enough that they don't look forward to being off of school like older kids do so for them it was just another week at home sick. No big deal.

Allergies have started to give us some grief but not as bad as last year. Hopefully it will stay mild for us because allergies are just annoying!!

With only about a month left of school for us we are already starting to think about next school year. On one hand I hate to do that but on the other I also love to plan. Especially when it comes to school stuff! I just get so excited for them! I also want to make the right choices for them so I think about it quite a bit. It is kind of an uncomfortable feeling to have only school decisions to make and not have them overshadowed by cancer decisions. Uncomfortable because it is a new/unknown feeling but one I'm welcoming and getting used to.

Hope everyone is enjoying their Spring and that whatever troubles/struggles you are facing you will find the strength/humility to turn towards God and turn it over to Him.

Wednesday, April 6, 2011

Counts and what not

The clinic visit last Friday went fine. ViviAnne has grown AGAIN. This little girl is growing like a weed! Her counts were still a bit up and her lymphnodes were still enlarged but nothing alarming. Dr. A said I did the right thing by taking her to the E.R last weekend. She said I waited and did not rush her there at the first sign of a fever but after days of fever and swollen lymphnodes she most certainly should have been seen at the E.R. All of her stuff turned out to be "normal" and she is well on her way to being "normal" but for right now she is still in the "watch her real closely stage". So, that was reassuring to me. I am always worried that I am over reacting or something. So it was nice to know I was not. I guess my maternal instincts aren't completely out of wack!

We are on Spring Break this week but in typical fashion for our family we have a sick kid! Coop has had some G.I think since Saturday night and the occasional fever flare up. The fevers are very occasional and I thought the G.I stuff was over but alas he is back at it again.

This makes two months in a row that every single week a kid has been sick with either a fever or stomach issues. They both can't seem to kick it! I am thankful we are not in the hospital!! But seriously I am like any other Mom, I would like my kids to be healthy!!

This too shall pass!

Happy Spring!!

Thursday, March 31, 2011

"Cancer is Yucky."

Hi all! Well here in our house we are never dull. Let me explain. We are a passionate, loud, crazy and sometimes just plain "not right". From the outside looking in we may seem to be pissed off a lot. And to some extent we are. (We are working on it.) From the inside looking in we love hard and loud, we fight hard and loud, we play hard and loud and heck we even sleep hard and loud! (Both kids talk in their sleep.) And we are a work in progress. At night I go to bed and think about all the things I could have done better or just did plain wrong. I ask God to forgive me and help to guide me to raise our children the way He has called them to live. To do what is right by Him and the kids. Basically I ask for help to not screw it all up!

Yesterday, Cooper had his 4 year old check up. I know, I'm 2 months late. Anyway. He is doing great! He is 75-90% in height and 75% in weight. He is a good little guy. They did a CBC and his blood work looked perfect!! YAY!!! They also gave him 5 shots in his legs. 3 in one leg and 2 in the other. So last night he ran a slight fever, threw up once and completely gave up on walking by dinner. This morning he wasn't much into walking but I told him if he could not walk he could not go to school. And today was a big day for him, he was the show and teller! So by lunch he was walking better and went to school. He said he put his picture on "Grumpy" for the "How are you feeling today chart". That is fine. I'd be grumpy too. He is night and day compared to Viv when it comes to everything. Including medical procedures. I am still figuring him out and his needs when it comes to illness and such. I know it sounds silly him being 4 and me still working on that but he was not a sick kid these past years (thankfully!) and I am so used to how Viv is when she is sick. And like I said, they are total opposites in nearly every aspect of life. Except one. Both of the kids are affectionate with us. They both love to snuggle and cuddle and just be close. Which for Brent and I is just fine. We are cuddly too!!

Now on to Viv's "biggie" for the week. Today while Cooper was at school she and I were driving down the road to home and she started to talk about her hair. Seriously, I am so over the hair talks. It is every day, more than once a day. I'm a bit burnt. But I let her talk and boy am I glad I did. I won't go word for word on the conversation because there were tears from her and a couple of "no, no, no, you don't understand" but I assured her I wanted to understand if she could please explain it again. So it went something like this. "When I had Cancer no one really liked me because of my Cancer and because I was gone so much. And now that I don't have Cancer people like me okay. But I don't have long hair like all the other girls. But I have hair when the Cancer girls don't." So I said, "So you feel kinda stuck in the middle and not sure where you belong?" And she said, "No, I feel like it is starting new! Now that I don't have Cancer I feel like I am starting new! And I don't like it!" I"m trying to gather my thoughts and all I can say to her is "Me Too! It feels kinda like I am starting new too now that you don't have Cancer! But by the time you're 6 (cause she is still working on concept of time) I bet it won't feel new to us and more. And all those yucky feelings you have on the inside about it right now won't be there any more. And when you see someone who is different, like in a wheelchair or with braces on their legs, you need to be nice to them and treat them kindly because you don't want them to feel bad and lonely like you felt when you had Cancer." And she said, "I know! I just don't like my cancer!" And so I said, "I know you don't. But, I don't think you should be embarrassed about Cancer because you won! You beat cancer and you should be proud of yourself!" And she said, "So I was in first place?!" Me: "No, no, no, you weren't racing. It was you against cancer and Noah against his Cancer and C.J against his cancer and like that." And she said the most amazing things next, as if she hadn't already. "Oh, so there are people still fighting their cancers but I fought mine and won?!" So I said, "Yes, some are still fighting. Others have won too and some have lost." (Okay, maybe I should have left that last part out to my 5 year old. It just kinda came out) So this is where we landed. Mind you most of this has been through her choking back tears. She says to me, "I don't want to talk about this any more. I don't like Cancer. Cancer is yucky."

So, we stopped talking about it. I did say something to her about an hour after this to tell her that I was proud of her and love her and that if she ever wanted to talk more about her Cancer she could talk to me any time. Or her Daddy. She said, "yeah, cause I beat Cancer. Cause the medicine worked." And I told her, "Yes, and you are a very strong smart little girl with a great brain and a beautiful strong heart. And together with the medicine you won! And I can't wait for you to show people how beautiful you are on the inside as you grow up!" And she gave me a big hug and said, "Guess what. I named my brain Thinker. Get it, cause it makes me think?!?!"

And that was that. My little glimpse into how she is thinking and feeling about where she is now on her Cancer journey was over. And that was fine. We moved at her pace and I tried my best to say the right things and sound sure of what I was saying and reassuring without sounding mad. I know that sounds weird but sometimes she takes my assured voice as a mad/angry voice. Which I don't yell it at her but I don't talk all sing songy oozing with sweetness either. Maybe I should, but I just talk to her like she is a person. I try to use words and examples for her level but the way I deliver it is just like I were talking to anyone else. Hope I didn't screw it up.

Again, her maturity and way with words astounds me. The way in which she can express herself never ceases to amaze me. I think this is another reason why I hate to see her have any struggles with the "friend" department. Well, any struggles at all. I feel like she has been through so much and knows so much and understands feelings on a level that the other 5 year old girls and boys just don't. And how do I keep her with having this empathy and internal beauty and be true to herself without hiding it/ignoring it just to fit in? How do I instill confidence in her without her being a "mean girl"? How do I appreciate her "mouth/brain" and still teach her that she needs to learn when to keep her "mouth/brain" shut? These are just some of the questions I have about raising her.

We go to clinic tomorrow for a check up. Hopefully everything will be fine. I"m sure it will.

Thanks for all your support and prayers.

And Jesus said, "Let the children alone, and do not hinder them from coming to me, for the Kingdom of God belongs to such as these." Matthew 19:14

Saturday, March 26, 2011

Another E.R. visit...why not

So Viv has been running high fevers since Thursday evening. Like upwards of 103. YIKES! And then on Friday she complained of her neck hurting in the back. I figured, oh a krick in her neck. I felt her neck and yes she had swollen lymphnodes but she is supposed to right? Well, Saturday MORE fevers and more complaining of neck pain to the point of unable to move it without Motrin or Advil. So after having a panic attack and multiple calls to my Mom, who is a nurse with vested interest, it was decided I should call the doctor. So I called her regular pediatrician. She wanted her to go to the E.R to check for strep and Minigitious. Given her recent history she just did not want to sit on it till Monday. So off we went!

No strep, no need for a Spinal Tap to check for Minigtious, thank goodness. The doctor did note VERY LARGE swollen lymphnodes in her neck. Only her neck. (Yuck, that is exactly like last time. I have been in knots even since the high fever spike!) The doctor went on and did a CBC. The moment of truth was coming. And thankfully she is fine. Her WBC's and ANC were very high but the Doctor said they are supposed to be. With Lymphnodes that large her body is obviously fighting off something, not strep though, so High Counts are too be expected even wanted. I had to have the doctor explain it to me. I knew how it all worked but this has not been our normal. Too high of counts has always been bad. Now, it is good. It isn't that I think the Doctor at the E.R. is wrong, because I know she is not, but it seems too good to be true. What? We dodge the bullet? The other shoe isn't gonna come falling through the clouds? I can breathe? Are you sure? I mean are really sure? But it's true. She is normal and sick and fine. Still gonna do a round of antibiotics to play it safe but other than that she's good to go!

So I know she is fine. And I had a couple of hours to pray and get myself chilled out before we actually left for the E.R and I was sure in my gut that she had not relapsed. Okay, so that evil 5% was there but I was 95% sure she was not facing relapse. That even though the past two nights have been flash backs to what it was like 3 years ago, this time we are not headed for a 4 month long journey of trying to figure out what is wrong. This time she is normal, sick kid.

Still gonna see the oncologist this week anyway but that was already scheduled. So I'm gonna sleep tonight. At least until she wakes me up with a fever again. Ha ha ha.

Thursday, March 24, 2011

This is a pic from today after Pre-K. We played with her hair and even though she wanted two french braids down the sides of her head I could not quite do it with her silky hair. I told her we would try when it is wet tonight. But...we did get Pig Tails!! Yay! It has been a year since pig tails!!! Again, I might be the one who is the most excited! All though I am not making too big of a deal about it to her. Because after all, hair is merely an accessory!

Also, her cast. You can't see the purple sparks in this picture but trust me they are on there!

80 degrees yesterday and 39 degrees today. Happy Spring!!

Wednesday, March 23, 2011

So, I guess I'm gonna keep going

Well, I have had a couple of people request I continue this blog. And after some thought I've decided to do it. As long as I can think it is worth it. I kinda felt like it would be me just talking for the sake of talking BUT I think, like my dear friend pointed out, that people who are in the storm of Cancer might find some little nugget of hope from seeing a family struggling but doing it AFTER Cancer.

Because like I've said, this is a NEW life. There is no going back to the way it was. And honestly, I don't think I'd want to. NEVER thought I'd say that!! Don't get me wrong I am not at all saying I am thankful for Viv's cancer diagnosis, because I AM NOT, but the things I have learned and gained from it I am thankful for. Example A, I have a pretty no nonsense approach to Doctors and Hospitals and Insurance now. Lets lay it all out there and deal with it and talk to me like I have a brain cause I do!! Example B, last week Viv broke her arm. I know, I know you're thinking WHAT?!?! But really I was not at all phased by this. I did not get angry, anxious, worried nothing. It was almost like I felt NOTHING. I mean of course I felt bad for her for being in pain and that she has to be in a cast for 5 weeks but other than that I was good. Okay, I'll tell you what happened. She was at my Mother and Father in laws' house and they have a patch of woods on their property. Well, our "little ballerina" was walking across a log, as to not be out done by her little bother, and she fell. She fell and hit her arm on the ground. But first and foremost she fell in the mud! She was most upset about the mud! When Kim, my mother in law, called me to tell me that Viv had hurt her arm I could hear Viv crying but still the mud was a BIG issue. I arrived to find Viv sitting in Grandma's lap all clean and she said through her tears, "I got MUD in my pretty hair! It was disgusting!" To which I said, "I'm sorry. Did you hurt your arm?" "yeah, I think I broke my arm, Mommy." She too was very matter of fact about it. True she was crying but she was fine. By the time I got her to the ER she was in no tears and never cried again. They hooked her up with Toy Story 3 and she was good. The nurses kept telling me how good and easy she is. To which I said, "She is a Cancer Survivor." So yeah she is good and easy in the hospital, it was a second home! BUT neither she nor I got really flustered or upset. Whatever, she broke her arm. Stick a cast on her and we're good. I can do broken arms. Heck, I can DO cancer. I'll choose broken arm but whatever! So she is sporting a Hot Pink with Purple sparkles cast. Because every girl needs some bling!!!

Brent still got upset that she broke her arm. He kinda went to the same angry spot I've seen him go to in the past 3 years. Now, this is not b/c Brent is an out of control person. It is because Brent HATES to see his children get hurt!! Hates it so much that he/we hover over of them A LOT!!! But he did not stay in this angry mode, which is good. Because it has taken us MONTHS to get out of that mode. But that is another post all together. Probably more than one post!

So we are doing good. Enjoying our crazy Spring weather even with the allergies and finding our way as a family.

If I can figure out how to get the pics of Viv and her cast off of my phone and on to here I will. No promises on that one!

Saturday, January 15, 2011

Post Chemo

Is this the end or the beginning or just a turn of the page?

I have not posted in a long time on purpose. The end of chemo was a mixture of happy and nervous emotions. Letting go of anxieties, anger and fears and embracing our new life has been more difficult than people want it to be. I am sure people on the outside looking in want to shake us and say “get over it”. But living it day in and day out changes you. For the good and for the bad. So I guess that is why I wonder is it the end, beginning or just a turn of the page?

We've mentioned in previous blog posts that we have not ever really questioned why ViviAnne/us? The question will never have an answer that will suffice. The real question is why anyone? Why should anyone suffer cancer? Again, no answer is good enough. So I have chosen that with all that I have had no control over, many times even my own emotions felt out of control, I will move on past this chemo journey changed for the better. I hope to learn from our struggles and come out the other side a better person for it. I would have loved to have learned to not be judgmental, to love deeply, to stand my ground, to pick my battles and want to be a service to others in a different way. A way that did not cause my baby to hurt and suffer; but that was not the cards we were dealt. So I am going to choose to put our lives back together in a way that fosters my newly learned traits. And trust me, we are putting our family back together one tear, one fight and one therapy session at a time.

My prayer is that God lead us through this new part of our journey. There is no going back. Brent and I can't even recall who we were before Cancer. Those people are not even memories, they have been erased entirely. The good part is we have chosen to pick up and learn one another together. To learn how to parent and live and create the family life we want for ourselves. I still mourn the loss of what was. I still have fears that I will fail at this new us because we don't really know what that is. And even though I have said we could learn to live a life that is not day to day in reality that is not the case. We are still day to day in many aspects. Taking it one day at a time. Rebuilding us one day, one break down and one laughter at a time. Any more than that still sends me into a tail spin. We're healing; physically and emotionally and spiritually.

So where will this blog go? I don't know. It may end. It may change with us. I do know that if we decide to end the blog this won't be the last entry.

Thank you for your years of prayers.

Monday, November 8, 2010

Four weeks with no CHEMO...

So far so good. She had her counts checked and there was no sign of Cancer. Just typing that makes my stomach do a flip flop. It is wonderful and scary all together. I find myself in a place that is familiar to me. A place in which I do not want to reside. It is that place of feeling your insides spin and your shoulders up around your ears and feeling like you might implode. I have no real cause for being there now. She is doing fine. Fear is the driving force behind those feelings and I do not want to live in fear. I've lived in fear for a long time. It is now my time and my families time to not have me there. So I do not dwell there. I allow myself to feel the fear for a moment but then I get back up quickly and get moving on out of there.

She is scheduled to have her port removed on Wednesday! It is the last physical element to saying we are done! This aspect is both a relief and scary. But in all honesty she has outgrown it so regardless it needs to come out.

Physically she is doing great. Emotionally and physically not so much. She is tearful and overwhelmed with sadness each day. She is having to figure out how to play in groups larger than 2 people. She would tell me daily, "It is just too hard, Mommy. I don't know how." Which she doesn't she has been sheltered and her little mind does not process really fast right now and knowing how to play with more than 1 person at a time is a learned thing. I think as adults we take that type of learning process for granted. But when your 5 year old comes home upset daily from Pre-K that it is just "too hard" to play with multiple people it is heart breaking. We are working on it. I have to remind myself that she is behind and can be caught up and Rome was not built in a day. Cancer was not beaten in a day. It was a long 2+years and recovering from it will take time. Her immune system will take a full 6 months to recover as well.

We are dealing with insurance issues as well. Seriously, fighting cancer isn't enough?! Come on, Humana, get it together! We live right outside of Louisville, you are a Louisville based company how are you NOT covering ANY University of Louisville Doctors?! It baffles me! But I'm working on it. We shall see. I am not gonna get on my soap box about insurance. That could be its very own blog for me!!

OH!! We went to FLORIDA Last week!! AWESOME!!! Make-A-Wish and Give Kids the World are INCREDIBLE!!! I am going to write a post all about it! Hopefully this week. I want to post pics too! When we told the kids that it was our last day in Florida and that tomorrow we would be going home Viv replied, "Yeah, cause we have to get back to our real life cause this is just our dream life." And that pretty much summed up the week.

Happy Fall!

Friday, October 8, 2010


MAN! October has been packed FULL of stuff already. We have been go go go and it has been a welcomed change of pace. ViviAnne received her LAST DOSE OF CHEMO 9 days ago and her LAST DOSE OF STEROIDS 4 days ago!! HAPPY DAY!! We can start the 6 month detox time and then begin to know our little girl again. Unaltered, no tummy aches, no fuzzy head and no sore body!!!! After 26 months and 3 weeks of chemo we are DONE!!!

She will keep her port until her next round of blood work. And Dr. A said that "WHEN her blood work comes back CANCER FREE" we will remove the port the next week probably. Not IF her blood work comes back cancer free but WHEN!!! How great is that?!? The doctor who has been with her the closest through all this is in the positive mindset that this journey is over for her. Our prayers is that she will NEVER have to walk this journey again. That has been my prayer for so long. One, to not lose her to a complication and two for her not to relapse. With Leukemia it is the complications that seem to be the biggest threat. BUT NO MORE. Not for now! And hopefully not ever!!!

Figuring out our Non-Cancer life sounds like a life I want to learn. Cause learning the Cancer life was NOT something I wanted to learn at all. No one wants to learn to live day to day. Now I have to figure out how NOT to live day by day. But I am willing and wanting to learn this new life. BRING IT ON!!!

Thank you to everyone out there who has supported us, prayed for us, laughed with us, cried with us and listened to us vent!! We have met great people along the way and I am so thankful to my Noogie Land Moms and Chemo Moms. I am so thankful for my Non-Cancer friends who have stuck by me/us too! The Lord has placed you all in our lives at the right moments and I am so thankful!!

Wednesday, September 22, 2010

Bump in the Road

Written by Kristen

A Bump in the Road
So last week on Thursday Cooper had a 12 hour stomach bug. I was hoping it would miss everyone. Monday early ViviAnne threw up. But only once. Then when she woke up from a nap she had a fever of 101.5. So I let her just hang out for a bit and took her temp periodically to see if it would come down on its own. She has done that in the past. Spike a fever and then it breaks all by itself. But after a couple of hours this did not happen. I called the Doctor and was told to take her to the hospital. We got here around 6:30PM. Her fever was gone by the time we arrived. Of course! But it spiked back up around 9ish and then again around 4AM. So we have been here for going on 48 hours.

She has really been okay today. Her HGB is right around 10 which is anemic but not low enough to transfuse. Her platelets are 230 but her ANC was over 9,000 when we were admitted. It has steadly come down through the course of the stay but considering it is still high they want to play it safe and keep her here while they wait to see if her 48 hour blood cultures come back negative. She has been fever free for over 24 hours as of now and so we wait.

She keeps teetering back and forth between being in good spirits and being down right hateful! Her biggest beef with today is she has missed her PJ Party at school today. She woke up and said, "Okay, Mom, tell them I am ready to leave cause if we go now I can still make it to my party". I told her it does not work that way here and she got all teary and started fussing at me that she was ready to get outta here. I can't blame her. She knows that she is missing out on fun things while she is in here. And she is bummed.

I am going to take her to Art Therapy here in a bit. We'll see how that goes. She keeps calling it Art Class. We'll go with that. Sounds better. Maybe they can get her to express why she is always so angry and argumentative with me. Then again, maybe I don't want to know. Kidding, I want to know.

Oh yeah! They are delaying her last Vincristine push and steroid round till next week. Which is fine. No steroids this weekend is fine by me. I am used to plans getting changed and schedules getting thrown off. It is life. You can either fight it or roll with it. I have chosen to roll with it. Getting all worked up does not help things.

I have also found a very firm sense in "This doesn't work for us but this does" and then going with that. It is my life and my kids and husbands life. We have to live them the way that we are called to live them. Not a way that makes other people comfortable but a way that God has asked us to live. And if that means saying No to things even when it would be easier to say Yes that is what I am doing. Finding my voice, I guess you would say. Now, I do need to work hard on the volume of my voice from time to time but our lives are all a process and God isn't done with me yet.

So our bump in the road has been just that. Just a little time in Hotel Kosairs. They are good to us. Oh and if you were wondering, even if this happened next week or next month the same thing would have occurred. Fevers within the first 6 months after treatment land you right back in the hospital. Come March I'll have to figure out how to care for a sick child and NOT bring them to the hospital.

Thanks for the prayers and support.

Monday, September 13, 2010

August Update

Well August was a full month! Viv recovered from her end of Julychemo round during the first part of August. Then as the month went on we geared up for her return to Pre-K and her 5th Birthday. She had a wonderful pool party with lots of friends and family and the cake she designed herself!! It was a lot of fun making her cake for her andgetting to celebrate her turning 5. One of the best parts of her party was when she opened a pair of jeans given to her by Grandma Susie and she said in her best drama queen voice and hand motions, "Oh I hope those aren't skinny jeans!" It made the party I think! Justgoes to show she is always paying attention.

Speaking of things "stylish" that is Viv's newest thing. She wants to be stylish and asks after getting dressed if she looks
"stylish". She changes clothes about 4 times a day and won't wear a dress to school because it does not look good with her tennis shoes that she has to wear for school. Maybe when the weather gets cooler she will with her leggings. We'll see if she finds that stylish?!

The end of August she had her FINAL spinal tap! She did just fine. It took a long time to get the both Doctors and Chemo and Nurse all there at the same time so it was about noon when they started and she was so hungry and thirsty that she just became very grumpy. I can't really say that I blame her. It was so weird to think that I was watching her get her last spinal tap. I even have a hard time saying it was her FINAL spinal tap because it just seem possible. Plus it seems like if I say it and really believe it than it won't be true.That is will somehow jinx it. I know others think I should have been bouncing up and down with the fact that she has had her last spinal tap but it just is too scary to think about. That other shoe might just drop if I do.

School has been going
along nicely and Coop is going to the same preschool as her this year. It is nice to have them both at the same place. He is doing great and getting all stickers when he is there. Right now it is about getting him used to being in a school and to like school, which he does. He has shot up in height! He is 41" and only about 1" shorter than Viv. They really do look like twins now. Her hair is just about the same length as his now and so I get that my sons are cute and then they'll stop and so, "Oh, I mean son and daughter" cause 9 times out of 10 she is in a skirt or dress or pink.

One more Vincristine push to go the end of September. One more round of awful steroids and then she is done. Just done. Some people have asked me what I'm gong to do with no more chemo and I just draw a complete blank. I guess we'll all find out the answer to that question together.

Tuesday, August 3, 2010

Friday July 30th

We had treatment today. Her counts were excellent at 1400!!! YEE HAW! We had a very plain jane, uneventful clinic!!! Those are the very best kind!!! She is doing okay. We still struggle with her attitude of everything has to be a fight and the "end of the world as we know it" when something does not go according to how she thinks that it should drama stuff but we're working on it. 2 more Vinchristine pushes and 1 more LP is all that is currently on the chemo schedule. Praying and hoping the other shoe does not fall and she really does get out of chemo.

All in all she is doing fine. She is excited about her 5th birthday and wants to talk about it A LOT! She is ready to start Pre-K again and is also looking forward to Dance. She asked today if she would still have her port and cancer when she turns 5. And told her yes. She said, "So, nothing changes I'm just bigger right?" She is so smart. I think that is part of the reason why she does fight me so much. She runs through ABC in her head of a scenario just like I do and if our two scenarios don't match up she gets upset. Especially when she just has to be correct, right? HA HA HA. Getting to know your children is such a wonderful experience and challenge.

I for one am looking forward to meeting ViviAnne in April. When I can know that it is not the chemo making her act a certain way. Poor baby does not even know what it is like to have a day with no meds, no pains and no crummies in the tummies. She has no recollection of what it feels like to not feel like crap or altered. She will have to get to know herself too. We will all meet again in the Spring of 2011. Sad, scared, feeling cheated but yet excited, blessed and encouraged are all the feelings I have about this new family we have for ourselves on the horizon.