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!

DONE!!!

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!!

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.

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.

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.

Just a little update.

Well, on Friday I took Viv to the clinic for two reasons. One, she had this really bad rash that I thought was from the sun exposure and all the meds but it looked awful and she was really itchy. Two, she needed a counts check after a increase in her Methotrexate. Even though Methotrexate does not decrease counts like the 6MP pill does they just wanted to check since they were taking her dose from a 50% level to a 75% level. Well, her ANC dropped, A LOT. She had been in the 3,000 for two months, hence the chemo increase, and her ANC is now 700. UGH!!

Dr. Ayyanar came in with her "concerned" face and said, "well maybe she has a virus cause her ANC is low but not too low to hold chemo. So, watch her for a fever cause it is possible and be very careful with her exposure to others."

So, our two days of normalcy this week were ended with this. Abigail, the kids 8 year old cousin, had spent two nights with us this week and we swam with cousins and friends for 2 days. So much for trying to be normal. We'll recheck counts in a week and see how she is.

2 years later...

July 10, 2008 at 11am-ish, I was phoned that my baby has cancer. Two years ago today we were living with cancer, not knowing what type, the prognosis or what we were going to do. Here we are two years later. She has been through many levels of hell and is not out of there yet.

We have had a great weekend and I was even able to relinquish her to be with Grandma all day yesterday. It took a lot of work on my part mentally and emotionally to not make her stay home from the wedding in the afternoon that she had already been told by Grandma that she was going to attend. I am so glad I did though. She had a great time and danced her hiney off with none other but her admitting nurses' daughter!! Joy she deserves and I am so glad I did not keep it from her because of my anxiety.

I find myself, after two years, to be riddled with fear and anxiety of stepping out of this house, this bubble we are in, and allowing she and Coop to do things without me by their side. On the rare times I do it I am watching the clock for them to come home. I contemplate whether to take her places over and over in my head. Simple places like Target, friends homes even family functions. And more often than not land on the decision to not go and do something; it is safer here. We longer go to the YMCA because my anxiety goes into over drive when I think of the germs in there. I can't even really remember just picking up and going without thinking about it for hours sometimes even days. My prayer is that ViviAnne and Cooper not be forever altered by these fears and anxieties.

ViviAnne is doing great. In two years she has only been in the hospital for longer than 24 hours every 6 months. And with exception to last April when her bone marrow stopped working she has really been a lucky one. She is beautiful and sweet and caring. Her caring even becomes a hinderance for her at times. She loves to dance and swim and sing. She LOVES to wear dresses, paint her nails and play all things girly and she loves books and drawing too. She is amazing with the complex issues and how she has a natural instinct on how to cope with them in the moment and then release and break down after it. Such a grown up thing to do.

Two years later we know what type, we know what the prognosis is but we still don't know what we are going to do. How to do this new life that is coming before us. I don't think we've done the past two years great. Not great but fair. But there is no hand book or "how to" book on life, no matter if there is cancer in that life or not. We do the best we can with what we have. And when you have been handed hell, you deal with it the best you can for you and yours.

Two years down. Three more Vinchristine pushes and one more Spinal Tap to go. The every day battle is ending. The light is there. And much like we were shoved into the darkness we are now being pushed into the light. Yes, it is for our own good but the darkness becomes your comfort zone making the light you have so longed for, prayed for and wished for just as scary as the dark.

Don't misunderstand. I want her to have her body back from these poisons she has been forced to take to save her life. I want to get to know my little girl as whom I thought she would be before she was diagnosed. I want her to know what it is like to have a day with no tummy aches, legs that can run the full length of the play ground without hurting, and a brain that is just as sharp and quick as others around her. But the fear is there. Gripping on so tight, pulling at you and your joy. I always wanted to have a joyful home. Maybe in the next year we can figure that out. Maybe the light will rush over all of us and the fear will be but just a memory buried in the back of my soul.

Summer Update

Long Overdue.....I know.

So I know I've been neglecting the blogs. And well, here is the thing...I just really don't feel like I have anything worthy of reading. Ever since she was released from the hospital in April, we have a pretty ho-hum life. I don't take them, Viv and Coop, really anywhere. We do Gilda's Club once a week, and now that the weather is hot, we swim at Grandma's about 3 times a week and that is about it. I will say this, Viv is a GREAT swimmer. She swims with no floaties/swim wings. She jumps off the diving board, goes face first down the blow-up slide and even spins mid air when she jumps off the board or the side into the pool. (Of course my heart about stops every time she does these "whirlly birds!!)

She is afraid of EVERYTHING on land and gets nervous when her tricycle goes too fast; but in the water she is a FISH!! That has really been the best part of summer, watching her just go to town in the pool! She is not good at running b/c of the muscle soreness with the chemo and I think she has just really taken to swimming.

It is great! Coop, well he swims but he is more of a guy who wants things on wheels! He loves bikes, big wheels and trucks and tractors. He has already requested that Nana get him something he can drive around at her new house. He is such a funny kid!! He also requested tools and a swing! All things man/boy related things, he LOVES!!

She had treatment last Friday and they increased chemo. They just can not keep her counts in the range they want them. Then when her counts do finally get into the right range she gets sick and they plummet! This balancing act and trying to figure out what it all means, if anything, is maddening!!

I have not only neglected the blog but family and friends too. I don't really do anything or call anyone. I just can't seem too. I'm struggling and maybe even more than I realize. I am spending what little energy I have on my kids, and then on some days there is some left over for Brent. He says he is fine with what I have to give him, that he is not feeling too neglected yet, so that is good. But I am just struggling. I know many people think I should be use to it or excited because treatment is coming near the end, but all I can say is this, sorry but I am not feeling any of that. I have to figure this out on my own time table and in the best way I know how for me and my family. That is the best I can do. And if that means I stay in this pit for a longer time than others think I should, then so be it. I am praying and doing all that I feel like I can do right now. Telling me how you feel is fine and great! I'm totally willing to listen and be happy for you. But expecting me, the MOMMY, who has been the very closest to this hell with her every step of the way and watched helplessly as my BABY is in hell, to just be okay, or happy, or over it/used to it is just not gonna happen. Brent and I have to figure this out. And me being where I am is making it harder, I know. So I've got that to figure out too.

So, that is that. I'm still day by day, sometimes hour by hour. I would someday like to not be in survival mode but that is all I have known for over 3 years now and I have that to figure out too. We'll see if my relationships with my kids and husband can ever get to a place I would really like for them to be and then be sustained in that place.

Home at Last!!!

So ViviAnne was released yesterday at 2PM. Her counts FINALLY came up and the potty issues have dramatically decreased. The last 24 hours were very tense. Her ANC was still nothing and her WBC was right at normal so Dr. Ayyanar did a lab test that would check her white blood cells for any Leukemia cells. If there were cancer cells she would then do a Bone Marrow biopsy to check for full relapse. Needless to say we were all VERY scared. But thankfully the lab results came back negative for cancer cells which meant NO RELAPSE!!! And ViviAnne was sooo tired of doing the nightly shots and the doctor determined that she could be completely done with the shots. Another good thing. So we are home! She is settling in okay, it is always an adjustment to be back home and having to share attention with a sibling.

ViviAnne said more than once that she wished I had not taken her to the hospital. She would scream and yell about the shots and say things like, "Mommy, tell them to take my port out I want to go home!" or "Why did you bring me here?!" It was heart wrenching. I explained when we were home that I did not want to take her to the hospital but that she was very sick on the inside and the hospital was the only place that could make her well. She just gets quiet when I tell her things like that. She had a lot of anger this time. And rightfully so.

Her hair is falling out still. She told me last night that she was sad her hair was falling out. I asked her tonight how she felt and she said mad and sad. When I asked why she said "because I won't be pretty any more with a bald head." I assured her that she is beautiful with or without hair. She has a TON of hair to begin with so even with it falling out by the handful she still looks like she just has thin hair. We'll see if it slows down this week. I hate it for her. She is so sad and upset about it.

Thanks for all the prayers and well wishes the past week.

We will go back to the clinic on Thursday to make sure her counts are holding and she is not in need of another transfusion. For now we are happy to sleep in our own beds, to not be stuck with needles and to be with Daddy and Cooper.

What ViviAnne has been up to...

ViviAnne is still at Kosairs in isolation. One of us will update soon with all the latest info in regard to what's going on medically. Just wanted to post a couple things really quick about what she's been up to. Being stuck in a room for over a week, Kristen and Brent have been trying to keep her entertained with art projects, pretend store and beauty salon, and lots of movies, among other things.

ViviAnne wanted to say a big thank you to her teachers and classmates at St. Aloysious for the bag of goodies they sent...

Also, here is a song she and Kristen wrote together...

The Sun has Gone to Bed

by ViviAnne Bohannon

The Sun is awake in the

morning
The Moon is asleep in the morning
At night the Sun has gone to bed
And at night I

must go to bed.
When it is time for night night I tell my Mom & Dad "I love You" cause I really really do.

I know we are friends when the Moon is out & the Sun has gone to bed.
And I know we'll be friends when the sun is out & the Moon has gone to bed too.
And I will be your friend in the morning.
I will be your friend always.

ViviAnne and Brent are working on a cartoon together. So far its about a guy who looks a like a triangle and incorrectly thinks he has super powers, and his sidekick, an evil Chihuahua with an identity crisis (and incontinence) who thinks he is french.

ViviAnne said "tomorrow we will work on their nemesis". Who Brent believes will be a Super Human Princess that fights crime in fabulous masquerade costumes.

Thanks again for everyone's thoughts and prayers.

Good Day...

Well, today was a good day. She is still not eating but her fevers seem to be gone and her potty issues are decreasing. She was in good spirits all day and laughed and smiled a lot. They had to de-access her port and then re do it. Simply a 7 day procedure thing. So while she was unhooked I washed her hair and let her dance around the room. And when the nurse accessed her port she did pretty good. ViviAnne told me, "they can't do it here. I'm really scared". A lot of times it takes multiple sticks and nurses in the hospital to access her port. Come to find out they don't hold onto it tight enough. But today I warned the nurse about her wiggly port and said to just hang on to it and all will be fine. And I was right. ViviAnne was glad that she got it in one stick, me too.

Her ANC is only 50 and her HGB is dropping but not too bad or too fast so we will see if it can just hold on and level off. Her platelets are still low, but they are the last cells to fully recover so we will have to watch them. BUT the good news is her bone marrow has a .1 increase in function!! YAY!! We'll take it. Or maybe it was .2 and her White Blood cell count was a .1 increase?. Either way it appears as though the bone marrow is starting to work again. She has the workings of Pre Cells in there and that is good. Her numbers are far from normal but bone marrow is not repaired in a day. Dr.Ayyanar was hopeful and optimistic that if her fevers stay gone and she starts to eat AND her counts come up and stay up then she can be released as early as Sunday!! So, we will see what Saturday and Sunday labs bring.

Now, with all this goodness there are 2 disturbing things to report. One, her hair is falling out in CLUMPS!! It is just like it was when she went completely bald. We'll see if it slows down tomorrow but it was BAD today. Her hair is shorter and much thinner than it was yesterday. Two, if she goes home on Sunday chances are I will have to give her her shots at home. YIKES! I am not afraid of needles but I'm Mommy. I'm supposed to be holding her hand during the shot, not giving it. SO, we'll see what happens there. Maybe her hair will not go completely out this time and maybe I won't have to give shots. We can always hope.

Thanks for all the prayers. I am always blown away but the out pouring of prayers for our family and little girl.

Wednesday Hospital Update

2:30 A.M
Here is what Dr. Ayyanar is thinking. She has a virus that has shut down her bone marrow and that is why her HGB and PLT are not maintaining transfusions and why her ANC dropped down to nearly nothing. So she received more blood and started doing a shot in her leg once a night to stimulate her bone marrow so it will produce and do it quicker than it is. At least this is the best I can explain it. I asked her if they were thinking relapse at all. She said no, not right now. ViviAnne is not presenting with other factors that they typically see in relapse. So good! IF these shots and transfusions don't hold her levels up then they will be looking into checking for a relapse. Kind of a non-committal answer but a plan with answers none the less.

SO, here is what I as the Mommy and the ever present person knows and fears. I know VivIAnne's diagnosis nearly 2 years ago was not typical. She did not have many factors that jumped out as Cancer and she had some things that suggested it was not Cancer. So telling me that she is not showing the typical signs of relapse is not comforting to me. Also, I know that Dr. Ayyanar is being truthful when she says that certain viruses in our Cancer kids can suppress the bone marrow to the point of nearly shutting off. And so going this route first is the best and most logical. And I am really hopeful and positive that this in fact the case. I do not have a heightened sense that relapse is here. Is it a fear, yes of course. It is a fear that every Cancer Mom and Cancer patient has. It is ever present. But do I really have my gut telling me that is the case, no. I am positive and hopeful her bone marrow will start to produce the necessary blood to survive and that she will not relapse.

It is now 3 A.M. She has a fever. CRAP! She had been fever free for over 24 hours. She is turning circles in her bed and talking with a whimper. She just spoke of shots. Love her heart I just wish I could trade places with her. I would. I would do all of this for her.

You may wonder how I do it. Often people outside of the Cancer world wonder that about those of us in it. Well, I can tell you this about me. When I am in the hospital with her my "energy level" or what some people call their "oara" drops down to nothing. I don't get panicked or anxious or mad easily. I do not get overly excited either. And if I do it is short lived and never in her presence. So even though my mind turns and burns I do not physically or verbally manifest these thoughts nor do I turn them into real feelings. Maybe this is also why the nights are hard for me. I have to work harder to not let my body and soul react to the fears and thoughts. They have to remain only in my mind and at arms length and in the dark nights it is harder.

I suppose if I really think about it I don't have the option or the knowledge to do it any other way. The fears are real but I don't want her to see or feel my fears, she is the one physically bearing the brunt of all this. Anxiety is no good cause I have no where to go and fighting against that fact is futile. Mad gets me no where either. So I sit. It is like my whole body goes into slow mode. I have to be Mommy and I have to be patient Mommy so no other emotion can be too strong. I do not think about doing this mental/spiritual/physical slow down. It just happens. I've learned that when a Doctor or Nurse tells you the results won't take long you are really looking at a 6 hour wait. Now, outside of the hospital 6 hours does equate to "not long" for me. But in here, it does.

This is another reason I do not talk on the phone too much. Talking about it to multiple people and answering questions or hearing their concerns makes it more difficult to keep my emotions under control. So, I go radio silent to many of you. The blog has helped. I don't feel like this is talking. I go at my own pace and when I want to. It is selfish and I am sure some people close to me feel slighted and that is not my intent. But I have to stay calm and patient for ViviAnne and this is the only way I know how.

I did feel peace today while watching her sleep at 7PM. She was getting her blood so the color was coming back to her cheeks and she was sleeping so peacefully. I just sat on her bed and watched her. I had no fears and no what ifs running through my mind. Just peace. I find myself watching her more this time. Really looking at her. She is so beautiful and smart. She told Dr. Ayyanar, who was speaking about how ViviAnne was when she was first diagnosed and how angry she was with the doctors and nurses every time they came in her room, that the story was so embarrassing. Exact words, "this is so embarrassing". Now, how many 4 year olds would say that to their doctor? She was so right on and did not lose her cool just said it. She cracks me up. After getting her shot tonight she told her nurse, "tomorrow night give my shot to another patient". I thought her nurse was gonna lose it! She also has the eye rolling of a 14 year old girl down pat!!

I really should try to sleep. I think the Tylenol might be kicking in. She is sleeping peacefully now. Good night all. Thanks for the prayers and warm thoughts. I am grateful for each of them and even though I have gone "radio silent" I want you to know I appreciate you and your prayers. God bless.

Hospital update

Hospital update
This morning her Hemoglobin (HGB) has dropped AGAIN, 7.2 now, so they are going to transfuse her today. Her Platelets (PLT) have dropped too, 58 now, but they are border line transfusion. Yesterday they had stopped one of her oral lung meds. that can lower counts to see if that would stop her counts from dropping. It did not. And the medicine they gave her in place of the oral meds had to be inhaled and after the breathing treatment she passed out. It was scary for me and I am glad my Mom was here and I was not alone. ViviAnne came back around quickly and 3 nurses ran into the room to help her. Thankfully that treatment is only a once a month thing so she won't be doing it again this stay, if ever.

Flagyl is the med she is on for C. Differential and it tastes gross. And this morning she lost all the color in her face and started to shake real bad and then threw up, threw up all the meds too. So they may change to a different med because this is the second vomit. She HATES to vomit. Really, who likes that yuckiness?

I have not seen Dr. Ayyanar yet today so I will ask her what her take is on all of this. Is it all from the C. Differential? We know ViviAnne tested negative on her Coombs test and on her Hepatitis test so I just am curious on the Docs. take. I like Dr. Raj, he was the Doctor on all weekend and yesterday, and I do think he is a great Doctor I just have a bit better of a relationship with Dr. Ayyanar. We'll see.

Thanks for all the prayers.

Fears still lie in the quiet dark

ViviAnne is back in the hospital. Friday morning around 4 she woke up with a stomach ache and a fever. I took her to the clinic first thing that morning to find her ANC at 100, her HGB at 7.8 and her Platelets at 78 all wrapped up with a temp of 102. So we were sent directly to the hospital. It is now 5 A.M on Monday morning, we are still here.

Over the weekend she has had a blood transfusion and a platelet transfusion. She has battled high fevers, low temps. and shaking. She has tested positive for C. Differential, an infection in the intestines/colon. It is painful and causes big potty issues. She is experiencing it all. On Saturday she sat next to me and moned for about an hour or so. Friday I spent most of the time in bed with her cause she felt so crapppy. Sunday she perked up but did have some icky times. Sunday her ANC was 10!

So, here I am again. Lying on an uncomfortable love seat thing with sheets that turn into a wrinkled balled up mess and I am facing my fears. I lie here with the all too familiar sounds of the hum of the air being filtered, the I.V pump squeezing fluids and the clock. The blasted clock in this room is loud! I can hear the seconds ticking away. My mind races as I go over all the blood work and tests they've done through the course of the weekend. Negative for Hepatitis, negative for Coomes, Pancreas working properly, Liver NOT going into liver failure yet. Liver enzymes high, Billy Rubin high, ANC low, HGB up but still anemic, Platelets up but still low......what does this all mean? I pull myself back from thinking the worst and just remind myself that she is sick and that is what this all means. SHE HAS LEUKEMIA DUMMY!

But still, here in the dark running on an average of 4 hours asleep a night, it is hard not to get lost in your fears. During the day I am distracted with tending to ViviAnne. Here in the quiet, but noisy, dark my mind turns and burns with questions and what ifs. And I think of Cooper. I miss my little man and feel like I am failing him. He is struggling with bad allergies and I just want to hold him. Love on him and listen to him talk. He is so funny.

The night in the hospital is lonely. You are reminded how isolated you are and how the world still goes on even though your world has been forced inside these four walls. It is a must in order for her to survive and I would not be anywhere else. But doing this again and again, and I think we are one of the lucky ones, can really do a number on your head. Facing demons and fears in the dark of a hospital room that no Mother and Child should have to face; and yet here we are.

Update

Just wanted to give a quick update. I'm sure Kristen will have a lot more info to share in the next couple of days, but until then...

ViviAnne was released earlier this evening from 7 West. From what I understand, all of her blood work (post-transfusion) and chest x-ray looked satisfactory to the doctors. I'll leave all the details to Kristen, but just wanted to let everyone know that she is home and doing well.

Thanks for everyone's thoughts and prayers.

Aunt Stacey

Back to 7 West

Kristen asked me to put up a quick post to let everyone know whats going on. I'm just getting bits and pieces from Brent, Kristen, and my Mom, but I think whats going on is...

ViviAnne was admitted to 7 West (Kosairs). She was looking really pale, had been coughing a lot, vomiting, and running high fevers. She had been fighting all this for a month now with antibiotics at home.

Her fever has broken but her lower left lung sounds diminished. They are concerned she is heading down the same road she was on last fall with the exception that they caught it much sooner this time.

I think her ANC was at 940 (which means she's neutrapenic) and her hemoglobin at 7.4, so she was given a blood transfusion. I think its going to be a kind of "wait and see" situation, so I'll update when I know more.

Aunt Stacey

HAPPY DAY!!

After two weeks of me being just a ball of anxious irritability today my feelings were relieved! We went to clinic to check if we could get ViviAnne to start responding to treatment again by a drastic increase in chemo and....SHE DID!!! The very minute Dr. Ayyanar said her ANC is 1700 I smiled so big and just wanted to jump up and down. I was so relieved and excited! She is responding to treatment!! Relapse averted!! YAY!! They are going to maintain this very HIGH dose of chemo as long as she tolerates it and IF she stops responding to it then we will just cross that bridge when/if we get there. I am not even thinking about that. I don't want to think about it. Today she is responding to treatment and her cancer is still being held at bay!!! YAY!!

Today is Brent's birthday and what a wonderful gift for him to have, a daughter who is staying in remission!?!?! So excited!

They are thinking she has asthma because the allergy medicine they put her on 2 weeks ago is not working at all! She has coughed and coughed for nearly 7 months and the only time she was ever under control was when she was on breathing treatments. I was against the asthma diagnosis months ago but now I am thinking that might really be it. She coughs all the time and if she gets upset she coughs so much she has a hard time catching her breathe. We go to the asthma doctor next week. They want to hold off as much as possible on any further X-Rays or C.T's because they do not want to further radiate her unless absolutely necessary. Which we appreciate.

So, today is a GREAT day. The sun is out and it is cold BUT I am on a high today. Which is good because I've been in a pit for 2 weeks!

I would like to thank everyone for their prayers over the past year and a half. And especially the past 2 weeks.

March 12, 2010
CRAP!

Well, ViviAnne had treatment today and it was not good. She fought every move we made just like she did in the very begging. I told her we could do it the hard way or the easy way and I really wanted her to chose the easy way. Well, I don't think she was falling for it so it was a 3 hour battle from finger poke for counts to when they came into her room at OMO to sedate her for her LP.
And to add insult to injury, her ANC had doubled from last month when they increased her chemo. So, basically her body did the direct opposite of what they wanted it to do. Her ANC was 6200 and her Hemoglobin had decreased a bit. I did not like the look of the blood work at all. The Nurse said they weren't thinking relapse but Dr. Ayyanar jumped on it and maxed out her chemo on all 3 different types. Which I appreciated. I mean, come on lets be proactive and avoid relapse at all costs! We will go back in 2 weeks to check counts again. They need to know sooner if she is responding to the increase like they want or if it will puts her counts too low. I personally do not think it will put her counts too low but I am praying that her body will respond to the increase in chemo and we will bring down the ANC. I hope I am explaining this all correctly and letting you

know that even if her counts do not respond correctly it does not mean for sure that she will relapse; but the thought is if the ANC stays too high for too long then your chance for relapse is higher, because you are not responding to treatment. ViviAnne, bless her heart, has not been responding according to the books for a year now. A lot of her cancer has not been by the book, not even the symptoms for diagnosis. But hey, that is how we do things in our home. We do things our way and not the way that is most popular and we still seem to pull it all off.

On a happy note, the new meds. they used to sedate her for her LP worked wonderfully. She simply went to sleep and woke up as if she was napping. I asked her if she thought her sleepy medicine went okay at the hospital and she said yes. We didn't talk about it too much. I am thinking that part of the reason for her being so hard to handle during the day was because of the fear of having a bad experience at OMO like last time. So hopefully the next time she has to go to OMO she won't be so afraid.

Her hair is beautiful and people comment on it a lot. I think in one way she does not like adults at school to dote on her hair because it is a reminder that she is different. She has been quite the handful the past 3 -4 weeks with attitude and anger and everything seems to be an arguement. We are trying to work with it the best we can and often I question if we are doing it correctly. Constantly wondering if it is the cancer and chemo or just her. But, maybe with her blood work getting all out of wack this past month added to the frustration inside of her. God only knows and it is going to be through his strength that we will get through this next year. Praying for her to respond to treatment and not relapse.

Best wishes to everyone as we welcome SPRING!!

Updates are back!!!!

February 14, 2010

Happy Valentine’s Day!!

Okay so we have not abandoned the blog. I have other posts that I have written and not posted but I just thought I’d add on to this one and try to consolidate a bit.

Christmas was good for 2009. A bit stressed but I don’t think we were any more stressed than the average family. We were home for New Years and the month of January went pretty smoothly. We have been running really high ANC counts for months now so the Docs increased chemo this past Friday when she was in for treatment.

But let’s back up just a bit. January 30^th we celebrated Coop’s 3^rd Birthday. Brent and I made him a John Deer cake and all of his Grandparents were able to make it in to see the big boy blow out the candles. What a sweet funny boy he is becoming. He will look at you out of the blue and tell you he loves you or that he likes you. And then that is it; he will go right back to whatever it was he was doing. So sweet.

ViviAnne is really enjoying Pre-K. She is staying 2 days a week for a full day and I have already told her that she will not be enrolled in Kindergarten next year and she doesn’t care, she wants to stay with “the little kids”. She doesn’t understand fully what that means yet but she’ll figure it out.

OH, ViviAnne finally grew!! She is 40 inches now! So exciting to see her grow and change. Her hair is thinning out again and the Docs said that it can happen that you just never know how a body is going to respond to treatment. I am thinking it is just going to thin and not fall out completely, that is my guess.

We have exactly 12 more treatments and 4 more Spinal Taps and we will be done. I have a knot in my stomach even typing that. I know I should be doing this joyous countdown but I am not. I am afraid to get excited about it and then the shoe fall and the dreaded happen. I know many of you are thinking I am crazy and not finding the joy in it but it is the Chemo Mom curse. You want to be joyous and you are but the fear is so real and so present that it robs you of it. And considering that the hypothesis is that a child who runs consistently high ANC’s is more likely to relapse…well that is her. For 11 months now we have been battling keeping her ANC in the range that is optimum. The only time she gets into that range is when she is sick and then it jumps right back up again. So yeah knowing these facts that I HAVE to know steal my joy of a countdown. Because the light at the end of this repulsive tunnel is growing bigger and brighter then it was last year and I know this time next year, God willing, the Light will be right on top of us! So I’m praying for no relapse and for somehow to find the joy, for my family’s sake. They need me to find the joy in life again, they need me to “get back out there” and I pray that I can and will and I pray it will be sooner rather than later. It can only help us at this point, can’t hurt.

While at clinic Friday ViviAnne was playing with another little girl about her age while in the waiting room. They were equal in their noise level, which for those of you who don’t know is LOUD, and they sat on the floor and giggled and played the Memory game. Then came the triage nurse calling the other little girls name. These two very small little girls stopped giggling and squealing and got completely silent and just starred at one another. The little girl put the cards down, got up and walked through the door leading to the exam rooms and treatment room. ViviAnne said nothing just told the little girl’s mother that she did not need help cleaning up the cards. She silently picked up the cards, turned and handed them to me and then sat in my lap, never speaking a word. I had to choke back the tears. To see these two very little girls with kindred souls about such things you pray your child never encounters share a moment together that was so tangible to me and heart breaking all the same. To see them ripped from their childlike innocence right there before my eyes was so hard.

ViviAnne has such a nurturing soul and she really thinks through things pertaining to feelings and hurts I know that she is meant to touch people far better than I, myself, ever dreamed. I am so blessed to have my children. I hope I can be successful in showing them that.

Below is an older update that never got posted...

December 21, 2009

MERRY CHRISTMAS!

First off, thank you to everyone who made our first ViviAnne’s Halloween at the Hallow and Golf Scramble such a success!!! Even with the cold and horrible wind I think a good time was had by all.

ViviAnne had a rough time in October and November with a cough that actually started in September and well it finally landed her in the hospital for 6 days. They determined that they (The Docs) would not diagnose it as asthma but Reactive Airway Disease, which is treated the same as asthma only it isn’t a lifelong diagnosis. And as long as she does not seem to suffer from other symptoms in the near future they will leave the diagnosis as such. SO FAR SO GOOD!!

Because of the cough and all the antibiotics and the flu going around she missed all but 3 days of school during the month of November and pretty much the last 2 weeks of October. But once she started back in December she has been great! She really missed school and once back she got nothing but smiley faces everyday! She was so glad to be back I think she didn’t want to rock the boat any.

December’s treatment included the dreaded spinal tap. And it was AWEFUL! The spinal fluid was clear, which is good, but the after effects from sedation were the worst they’ve ever been! She always initially wakes up telling me she loves me and that I have 4 eyes and then she turns into this anxious, crying, angry with a mix of scared little girl. But after about 30 minutes of that she settles down. NOT THIS TIME! This time she turned from the sweetness to the other very quickly and she was hallucinating! It was awful! I cried. I couldn’t get a grip. Thankfully the Anestiaologist was there and she took care of both of us really. I didn’t know what to do. ViviAnne kept jumping and yelling, “WHAT WAS THAT!?” and then she’d ask me to hold her but when I would get close to her to hold her she would get jumpy and tell me to go away. I didn’t know how to console her without aggravating the situation. It went on for about an hour. They’ve decided from now on to put her to sleep with a different drug that does not have all the psychotic side effects but does come with a bit more risk while as

leep. Like needing oxygen while in sedation but that the wake up is much better and I have heard of other Chemo Moms talking about this form of sedation and it seems like the older kids like it better because the wake up is not so terrible. So we will see what that one brings. All I know is Friday was HARD! It took me DAYS to recover. I don’t think I ever will. This too will go into my memory bank of the horrors she and I have faced together with her bearing the brunt of them.

Which always leaves me wondering what she will remember? I have been told that, as with many things, time will erase the memories and she will only subconsciously remember but that her ability to truly recall the horrific feelings will fade. This is the only thing that gives me hope that she can have a childhood. I will carry the memories with me forever. And, I am sure, that this memory will be filed away and rear its nasty head from time to time. Just as these memories did tonight as I lay trying to sleep.

While at the dinner table tonight I looked over at Cooper who will be 3 in just six weeks. The exact age ViviAnne was when she was diagnosed and we were signing off on all the protocols that would govern and save her life. And I thought to myself as Cooper was tearing into his chili, what a baby he is. What a baby she was and how I would love to take back some of the things I have said to them over the past year and a half. It makes me question why we were given a sick child. Not a “whoa is me” kind of questioning but rather a why was this beautiful child with cancer entrusted to us to raise? Brent and I aren’t exactly the poster parents for patience and so why would this stress be given to us? What are we supposed to learn and/or take away from all of this? Will ViviAnne remember all the times I’ve lost my patience or ended up crying in the closet? Will she only remember the hurt at home and not the laughter? Have I given her enough laughter? These are the questions haunting me tonight as I replay memories in my head of things I wish I’d done differently and hope she and Cooper don’t remember.

It reminds me of the Ghost of Christmas Past kind of thing. Like here, Kristen, let’s look at how you lost your cool with your toddler while she was in the hospital getting chemo. (I put her in time out in her hospital room. What kind of mother does that?!) Or let’s look at last Christmas when Brent and you got into a yelling match after him losing his cool with the kids and then I ended up crying on the floor in the laundry room, “Merry Christmas!” were not the words I would have thought of then. How about the times she had to be held down by me and others to get poked by needles, me the woman who is supposed to protect her from all harm. And the time when she fell down on week 2 of treatment and I had no idea that her feet and legs were giving her as much trouble as they were and while I held her hand she cried and said pick me up and I told her no that she could get up by herself and really in truly she couldn’t. I can still picture her little body on the ground holding my hand crying and I said put your feet under you and push yourself up and then she cried some more and Daddy did pick her up but I was SO clueless I just didn’t see that she was not capable of getting up. She wasn’t just a toddler throwing a tantrum. I still cry when I think of it. Oh how wronged she must have felt by me. Her Mother wronged her in a desperate time of need. I deserve Cancer, not her. I deserve whatever physical punishment God can think of, but unfortunately I do not get any, she does.

The plan for this year is to be better and to DO better. For Christmas we will go to Grandma’s and Nana’s and have a Merry Christmas…we shall see.