ViviAnne's Halloween @ The Hollow

Time for Reflection

Well it is night and the house is quiet. Both kids are exhausted because of all the comings and goings with ViviAnne going to Pre-K every day and today she started DANCE!! YAY! So they both fell asleep on the couch at about 6:45! Crazy, I know!

The past few weeks have been great! Don’t misunderstand me there have been plenty of squabbles between the kids and me fussing at each of them but we have truly been blessed! ViviAnne is enjoying school and comes home every day with smiley faces (their form of grades) and only a few “needed a reminder” faces but those are ALWAYS for talking. She has been 100% with her helping others, following directions, learning prayers and language skills SO I can deal with the talking because I figure the other stuff is where it really counts! Her temper seems to be getting a bit better too. Sure she has her freak outs and melt downs but she is 4 and we are working on it. But I cannot tell you how incredibly happy and overcome with joy that she is where she is today!!! I could not even see this place a year ago. I longed for it but I did not truly understand the meaning between having a “normal” child and a “sick” child till now! She is still sick but she is getting to do “normal” things and loving it!!

I asked her last week if she had told any of her friends at school about her port, and she responded with “No” and a look like “are you nuts?” Then I asked if she had told anyone at school that she has Cancer, to which she said, “NO” again with the look of are you nuts. So I explained she did not need to tell anyone at all I just wondered and there was no need to talk about it with her friends at all. She just went on back to eating her lunch and never said another word about the subject. I think she knows she is different with her Cancer and her hair (all though it is too cute) and she just wants to keep it under wraps. I can’t say that I blame her.

Today she was explaining to her Daddy and me that her hair MOVES NOW!! Like in the wind when she rides the horses on the play ground. She was VERY happy about it. Too funny how much she takes in, it is no wonder she is wound a bit tight with her temper. She has been through hell and back and has no idea why or how to cope so she just loses it when she doesn’t understand simple things now. Everything is a threat I guess. But, like I said, we are working on it.

At Dance tonight she was so sweet. When I told her she was starting dance today she just smiled the biggest smile and said, “Will I get to use my ballet back pack and shoes?!” I have learned not to tell her things until maybe a couple of hours before it occurs because she just gets so worked up. And in cases like this she would imagine all the things that she would like to happen and if it didn’t play out like she had in her head then she gets upset. I guess we are all a little like that but I just keep her on a day to day schedule except with school. It works better for her little mind. ANYWAY, when we went to ballet she did everything the teacher asked and smiled and would sneak a quick wave to me every now and then. At the end of class a little girl had an “accident” and ViviAnne rushed over to her, put her hand on her back to comfort her and had this very worried look on her face because of the girl crying. To which ViviAnne says, “she just needs her Mommy” as she pats the little one on her back. All the other little girls just kinda stared but ViviAnne ran to the rescue! It was so sweet to see her concern for her.

I did have to leave the room at one time because I started to cry and there I was again being the emotional Mom but this time I got away from people BEFORE the tears fell. I watched her walk on her tip toes in a line across the room. I watched so closely as just 11 months ago this was one of her physical therapy moves because she did not have the strength in her legs to walk well. She sort of swung her right foot around and the left was very unsteady. And to see her do this nearly across the room was just over whelming to me. To see how far she has come and to know that no other girl in this room (THANKFULLY) has had to travel her road was just a lot for my heart to bear. I was thankful. Thankful she is here today, thankful Cooper is happy and tearing the place up like a normal 2 year old boy, thankful that today she has not relapsed and even though she is tired it is from her “normal” life not her “sick” life!! Thank you, God, for getting us through this battle! Even though the war is FAR from over I feel victorious today.

Update

I know it has been a long time since an update but I am having a hard time finding the time to write an update that is worthy of posting. So, here it goes.

Last Monday ViviAnne started Pre-K! How exciting?! She is doing wonderfully in school and seems to be adjusting well. On her very first day of school I asked her if she wanted Mommy to drop her off or walk her to her classroom. There was a rather long and silent pause from her to which I knew she was giving it some serious thought. Then, to my surprise, she answered back, “I want you just to drop me off.” I was floored. I explained to her what that meant and she said back, “I know I know I want you to drop me off.” So I did. Except she did forget to grab her backpack on the way out of the car so I did have to get out to give it to her and she was in serious, school mode. Actually I think she was overwhelmed and a little scared but the point is she did not say a WORD or even look around she just kept her eyes straight ahead and walked towards the doors with her teacher. I was standing there waving and saying, “Bye, ViviAnne, bye honey” and she never turned around or anything. I think the only thing she could hear was her heart beat and own breathing at that point because the teacher had to lead her with her hand on her shoulder. I, on the other hand, heard nothing but her silence and my heart breaking. I returned home to tell Brent what had happened and he just smiled this understanding smile for me but proud smile for her. Then Cooper and I went to my Moms and I told her and cried. I was that Mom standing in the carpool lane, blocking it even, begging for their child to wave. For the next two days she did not say good bye to me when she got out. Then on Thursday I heard her little voice say, “Bye, Mommy!” And I turned and looked over my shoulder to see her turned around and waving. I nearly wrecked the van as I arched my back to wave and yell, “Bye HONEY!”

Tuesday was ViviAnne’s 4^th Birthday. She had a wonderful day and even came over to me at my Mom’s house while we were getting ready for dinner and gave me a hug and said, “I really do like my Birthday, Mommy.” She had gotten a bit sassy early so I think she thought I was upset with her. I was with the sass but not with her for the day or anything. She received a Pink Soccer Ball from my Mom for her birthday which she was so excited about she stopped opening the present when she realized what it was and started to jump up and down and squeal. I guess she liked it?! I had to finish taking the wrapping paper off. She had decided though that she was NOT 4 until after she blew out her candles on her cake. So the next day at school she was on the playground throwing her hands in the air while yelling, “I’m 4 now! I’m 4 now!” Too funny.

Friday ViviAnne missed school for treatment. She did not want me in the room while they pricked her finger for her blood tests. She instructed me to stand in the hall. She could see me because basically I stood in the doorway but that was where she wanted me. She looked at the tech and said, “I’m 4 now so I am a big girl.” She did not cry when they took her port out this time but you could tell she was trying REALLY hard not to. She just laid her head on my just and wimpered a little bit.

She was diagnosed with a sinus infection while there and they also informed me that, yet again, her counts are too high! CRAP!! What does this mean?! She can’t have her 6MP pill increased (that is her daily meds) it is already at 100%. They can still increase Methotrexate and Vinchristine but those are the MORE toxic drugs so I’d rather not, but if that is what HAS to be done then we will. They are gonna wait and see what next month brings. They also ran a count on her IGG. It is a part of her immune system they can increase for fear it may be too low. So they told me not to be surprised if I get a call to bring her in for an IV drip in 2 weeks. We shall see. I have no idea how a low IGG and a high ANC go together but I do plan on calling and asking this week. I am just a tad nervous about these high counts, AGAIN!

She is tired and emotional this round of steroids. No real hunger yet but the tired part hit pretty much the day after treatment. But with school and a sinus infection and CHEMO who wouldn’t be tired. I’d want to just crawl in a hole with all that. But she treads on and is very excited about school this week too.

I’ll update about IGG and high ANC as I get the info. I will even post some pics from school and birthday.

ViviAnne is 4!!!

Fall Fundraiser

Written by Aunt Stacey

Everyone mark their calendars for October 17 2009...we are having a fundraiser for ViviAnne's treatment! It is going to be a Family Fair type of event in Oldham County so come on out and bring the kids to have some Fall FUN!! Music, food, games, cornhole, and much more. We will also be doing raffles and silent auctions on donated goods and services.

We are still working out the details, but wanted to give everyone as much notice as possible. More info to come soon:)

PHEW!

Let me see, where do I begin? Well, I suppose I should start with some exciting news. The increase of ViviAnne’s Chemo did the trick, her counts have all come down but not below the cut offs!! SO they are going to keep her at this increased chemo level and she seems to be tolerating rather well. She is such a trooper. Steroids have been rough with the attitude this go around BUT it could also be do to the fact that she has had an INCREDIBLEY busy last week!!
Here is how it all went….
Monday through Wednesday of last week ViviAnne attended Cheerleading Camp at my niece’s high school. Madison, my niece, is a Varsity Cheerleader and they do this for a fundraiser. ViviAnne was permitted to go into the 2nd grade group with her cousin, Abigail, because the two of them are attached at the hip when they are together. ViviAnne had a GREAT time. What little girl wouldn’t, she was encouraged to yell and jump around while INSIDE. These are two things that are frowned upon at home; she was loving it! GO REBELS GO!
Thursday morning was her Chemo day and the start of 5 days of steroids. She did as usual. No tears until after they took the needle out of her port. It is like she takes all her energy to keep it together and then the moment it is over she just lets the tears fall. My heart breaks for her. To think of how my very young little girl has the ability to pump herself up mentally and emotionally for all that she has to endure and she responds like I would and I think ANYONE would, with tears when it is all over. It is really something else. I was told more than once this weekend that she seems more mature than a 4 year old and in a lot of ways, she is!
ViviAnne was a flower girl this weekend in a wedding for Cousin Debbie’s daughter, Shelby. So, we had quite a few things to do over the weekend after an already busy week. Thursday evening we went to a cook out and both ViviAnne and Cooper swam and met one of the ring bearers. We had a good time and the kids loved swimming, as always. Cooper even went down the water slide and LOVED IT!

Friday Kim and I took ViviAnne to a bridal luncheon where she wore her fancy dress with her pink pearls and she was very well behaved. Shelby gave her the cutest bear from Build-a-Bear that was decked out in pink princess, ballet wear and even with a cell phone and crown, right up ViviAnne’s alley. Shelby recorded herself saying, “ViviAnne , you look FABULOUS!” and when you press the paw that is what you hear. She just loves it! That evening was the rehearsal and she practiced pretty well and then the dinner at Captain’s Quarters, she really enjoyed watching all the big boats and ducks and she is a BIG fan of Shelby. In her eyes she is the best thing since sliced bread.

Saturday was the big day! Poor Shelby and ViviAnne were off to a rocky start. But after a little bit of sprite and fanning and some bribery, only for ViviAnne though, the wedding went off BEAUTIFULLY! ViviAnne walked down the aisle and smiled when told to and stood where told as well, the only thing she did not do was drop the petals onto the floor. I think we had spent so much time telling her NOT to drop her petals and putting them back into the basket she just thought they were not supposed to come out of the basket at all. She really was precious and Shelby was GORGEOUS!
ViviAnne and Cooper both danced and Cooper behaved himself BEAUTIFULLY! ViviAnne on the other hand I think had just had enough. She was in tears and fighting with her Daddy and by 9PM she was up in the room ready for bed. She said to me through a little bit of tears, “Mommy, it was just A LOT! I’m sorry I behaved that way, but I am tired,” And you know what, I could not argue that at all. She had so many people she didn’t know telling her how cute she is and wonderful she did and couple that with being tired and on steroids and you get one worn out little girl and one worn out Mommy.

Needless to say Sunday and Monday have both been low key at home days. She did not even want to play outside today and the weather was wonderful. But I was not going to make her because honestly I did not care.
I was telling Brent how worn out I was and kind of complaining but you know what I take that all back! How lucky are we to be able to do these things with her?!? This time last year she could barely move from all the pain of the chemo and swelling from the steroids. We weren’t sleeping and all I could think about was, please let her survive! I mean exactly ONE YEAR AGO this is what was happening. I could not have even dreamt that I would be able to do cheer camp with her or allow her to be a flower girl! And now, I just PRAY that she does not ever relapse so that we do not have to relive that horrible HELL! Oh man, what a difference between Induction and Maintenance!! God is good and I have realized that somehow along the way I have embraced this life of Cancer. No, it is not a life I would have chosen and yes I do still get upset when I think about all that was taken from me, things I will never know or the fact that the constant steroid levels in my baby have altered her from who she could have been BUT I try really hard not to dwell on it. I allow myself to have the feelings but I don’t dwell. Because this is my life, I can’t change it and I have no choice but to try and make the best of it. It is kinda like Brent says, “If you want to see God laugh, think that you are in control.”

Tomorrow is the 16th!

Daddy Writes:
I sat down at my computer tonight like I do every night after everyone goes to bed and the house is finally quiet. But unlike the typical nights I didn’t open up Autocad and get busy working on drawings or jump onto Facebook to follow everyone else’s life and procrastinate working. I didn’t check my email or the bank accounts. I just sat down and for some reason lost control of my emotions. Today was a normal day; no more stressful than any other, normal fights and fits, one kid went to bed easily, the other required some work, Kristen and I had few squabbles but nothing major.

I could not figure out what the hell was a matter with me. I thought to myself that I haven’t been a mess like this for a long time…for like a year…and then it hit me like a ton of bricks. A little bit of panic set in. I had to find a picture or something so I started digging through the archives of my hard drive with some sense of urgency. I kept going further and further back in time. I could not find what I was looking for because I didn’t know what it was. The process of scavenging through pictures and blog post and old emails was like a horrible series of flashbacks. Like you would image your life passing before your eyes with every thumbnail and preview recalling a time or memory but everything that popped up on my screen was in the last 12 months. And then this image popped up…

And I realized it was what I was looking for and I just flat out lost it. This was one of my favorite pictures of ViviAnne before she was diagnosed. As stupid as it sounds, it’s like my subconscious had booked marked today’s date. I couldn’t remember my life before July 15^th of last year.

I continued to dig through emails trying to recover what I was doing, what I thought and cared about because I clearly don’t anymore. I don’t remember a lot of things from High School and College…but there is a logical explanation for that. Why can’t I see back just 13 months ago? The more I think about it the more I realized that I have been doing this for the past few weeks leading up to today. Taking ViviAnne yesterday to meet people and see jobs I work on in 2007, All of us going to Lexington in the middle of a day on a Monday just to stop in at RTA just to say “Hi”, Driving by the old house, Quitting my job (maybe…maybe not), just to name a few. I have been numb for a long time. I miss who she was before all of this. I miss who we all were before this. I hate that Cooper has seen the worst of me. I miss the relationship I had with my wife. I miss our friends. I’m tired of telling everyone we are "fine" and "doing great". I hate who I have become. I WANT MY LIFE BACK!

Sorry for the pitty-party but that is today in my life.

This is me closing a chapter…Tomorrow is the 16^th!

Hair Pics from Aunt Stacey

HAIR!

Delayed Update

A week ago ViviAnne received treatment. Her counts were still VERY high so one more month and then they will need to adjust her chemo pill to a higher dose if the counts remain high. As stated before, too high of counts means her body is processing the chemo too quickly and the chances of relapse are higher when counts remain too high for too long. It is all a balancing act. This time the chemo seemed to hit her hard! She was her usual angry, hungry self from the steroids and she had NO energy. She would want so badly to play, and would for a bit, and then she would go and lay down. You could tell she just did not feel well and was angry that she didn’t feel well. It took about a whole week and then she felt better. She has such an attitude this week too! But this could be a 3 year old with chemo brain too. Not a good combo.

Her hair is really growing and she has a cute little tan from swimming and her hair is getting white from the sun. I think it might be curly. The whole back of her head is wavy and the sides are long enough to be over her ears now and it is starting to curl up too. We shall see!

Even though this time of our live is trying I am reminded daily by acts of kindness from friends, family and strangers that God does have his hand in all of this. It is really comforting to know people are out there praying for us and supporting us through all of this.

Thank you Jindy and Christy...

Brent’s cousin, Christy, and her new husband Jindy have written very encouraging words on the blog and sent cards with words of prayer and encouragement as well from the very beginning of ViviAnne’s treatment. Well, now these two beautiful people have even gone one step further. They asked all of the guests at there Texas wedding reception to not bring them gifts but instead to use that money and donate to ViviAnne’s Fund! HOW AMAZING and UNSELFISH is this!?!?! To forego wedding presents so our family can have a bit of the financial strain lifted is too awesome for words!! We thank you for all of your kindness and love, Jindy and Christy. And to your guests who donated as well. Thank you!!

HILARIOUS!

**This was written by Kristen last week.

ViviAnne has had a good week this week. She is still her sassy, strong willed self but she is sooo funny too. Lately it has been all about dancing and gymnastics at our house. She loves to dance and watch others dance and do her gymnastics “tricks”. I will be finding a place that offers both of these services to her if we can swing the money. I wish I could somehow explain her dance moves. Simply writing, “With one hand on her hip and the other arm out stretched she shakes her little hips and taps her foot” REALLY does not do the dance justice. It is too funny!!

And Cooper! OH MY! Today I squirted him with water while we were at Grandma’s pool and he thought it was funny. Well, then he got out of the pool and I went to squirt him again and he said, “HA HA HA, you can’t get me now!” He is so funny and SMART! With the two of them being so smart and close in age I am gonna have to really work to stay one step ahead of them. We’ll see how it goes.

I’ll up load their Mother’s Day Out pics too. They are very expressive of their personalities. Ms. ViviAnne with her “sassy, dance pose” and Mr. Cooper and his “laid back, cool guy pose” and according to the director these were not poses the photographer told them to do. Just told them to pose and something along those lines and my kids being so comfortable in front on the camera went into full on “cheeeeese” mode.

It is late and I had a good day with them today and yesterday so I am not gonna get into some of the bad things that have happened over the course of the past 3 weeks and just go to bed basking in my children’s humor and innocence. Chemo is next Friday. YUCK!

Update

I definitely think this time the coming OFF of steroids was worse than being ON them. She has lashed out more being off of them but we are working on it. On the plus side, her sleeping has gotten better the past 3 nights. She was only sleeping for about 5 hours while on the steroids but she has slept through the night for the past 3 nights. This is a HUGE help to my sanity. I am a person who needs sleep and although I do not get it I can only tolerate no sleep for so many days and then I physically get ill. Back when she was first diagnosed I could go a week straight with very little sleep before crashing, now about 4-5 days is my limit and then I’m sacked out, so her timing was perfect on sleeping through the night.

ViviAnne was looking at pictures online of an 11 year old boy she knows from clinic, Jesse, who we have referred to in previous posts, and she said “Oh, he looks like a PRINCE!” He was dressed up and she thought he looked nice. She thinks any man dressed nicely with a “Mommy” must be a Prince so this was a complement to Jesse.

She and Cooper were playing last week, and by playing I mean rolling on the floor, and Coop all of the sudden stands up and says, “Ouch, Sissy, you hurt my port.” As he is holding is chest in the exact spot she has a port. I tried very hard not to laugh but did tell him he doesn’t have a port. She is convinced that one day he too will get a port and telling her other wise is like spitting into the wind, so I don’t.

She is doing great besides the temper this past week, hopefully that will fade too and then we will go in for another treatment, but this is our cycle. I think of the ebb and flow of the ocean waves when I think of her cancer treatment schedule. And like the waves sometimes the crashes and roars are very loud and turbulent. But with the help of God, family and friends we are navigating through these waves.

Update from Kristen

I took ViviAnne to clinic this past Friday for her monthly round of chemo and steroid start. She did great, as usual. She cried a little because she didn’t get to go to the hospital! (Yes, you read that right.) They spoil her over there and she doesn’t mind going and playing and getting all the attention. She is always given a drug that erases part of her memory of the day so she NEVER remembers her actual treatments. So she was upset when she was told, “No hospital today,” Oh, the mind of a 3 year old!?

This round of steroids hasn’t been as difficult as last month, so far. She hasn’t complained about her legs either so she must have tolerated the chemo pretty well. Her counts are VERY high. So high in fact that if they remain this high next month they are going to up her 6MP (daily chemo pill) dosage. This pill is supposed to suppress counts some and if it is not doing so then there is the risk it is not high enough and doing its job of ridding her body of cancer. Was that clear? Let me break it down a bit more. If the 6MP dosage isn’t high enough for a long period of time or isn’t working then RELAPSE of cancer is the side effect. It is this weird balancing act. You don’t want too low of counts BUT you don’t want too high of counts either. So we will see what this next month holds.

She has been very active and you can tell that all last week she felt great. She is REALLY testing her limits now with us. That whole "I’m gonna do what I wanna do" is in full bloom. Her pediatrician assured me to just stand my ground with her so we as parents can run the house, not her. She has for about 7-8 months SO regaining our control is going to be a long, long, LONG road but it is a road we need to travel.

Oh, here is a new funny line of hers. “You are ripping my sound!” This is yelled at Cooper when he interrupts her while she is talking, and she is ALWAYS talking. She has also discovered funny faces and is trying to figure out the concept of rhyming. It goes a little something like this, “Bruce…..that looks like bruise. You know bruise on my leg.” So she is getting that words sound similar and can pick out words that kinda match but the rhyming still hasn’t come yet. She can also add the number 1 to any number 1-5 and know the sum. She calls it her “plusses”. She’ll say, “1 plus is 2, 2 plus is 3...” and so on. She doesn’t always think to say the 1 but sometimes she does. But boy oh boy she has it down pat! She can mix it up and start with 4+1 and then move to 2+1 and such, so it is no longer the pattern she has memorized but actually how to do it! I personally think this is AMAZING from a little one who does not attend preschool or day care. The Mothers Day Out program works on letters, not numbers. Isn’t she great?!?!?

Her hair is BEAUTIFUL! It has grown in even and thick and is a darker blonde than it was before but is blonde still. People ask me if I’ve cut it because it is all even and thick. I just say, “Cut it?!?! No, it is growing in!” If I tried to cut her hair she would lose her mind on me! Well, since everyone is doting on how great her hair looks while getting her ready for church on Sunday I asked if she wanted a hat and she replied, “No, I want people to see my beautiful hair.” Fair enough. Show that hair off, baby!!!

Where has the time gone?

Sorry it has been so long since our last post. I can’t believe we’ve neglected the blog for a month! Rest assured we will do our best to not let this happen again.

Let’s see, where do I begin? Well, ViviAnne received her Vinchristine and Spinal Tap with Methotrexate on April 10th and did wonderfully. She was a little pissed when she woke up from the spinal tap but this has become to be expected. Her initial wake up is always the same, “Mommy, I love you. How are you? You have two eyes.” The last part she means two SETS of eyes. And then once she becomes more coherent she doesn’t remember helping to push in her meds, because that is the highlight for her getting to help push, and she becomes angry because she doesn’t remember pushing it and thinks she hasn’t done and needs to do it. Remember, a change in the routine freaks her out so her not remembering a big part of the routine and the nurses and me telling her that she did in fact do it makes her little 3 year old groggy brain flip and she gets MAD! But once this wears off she is back to her normal self, just sleepy.

She was VERY irritable on Easter and all weekend due to the steroids SO we made the most with what we had. She did get to wear her fancy dress and go to church and did an Easter Egg Hunt at Grandma’s. She was bummed the eggs were empty BUT she still had a good time. Cooper of course did great at finding the eggs because he didn’t care of they were empty or not.

We have been getting along as best as we can. We have found our own rhythm in the house and it is probably different than others but that is okay. It works for us. She and Cooper are enjoying a semi-normal childhood with trips to the YMCA 3-4 times a week while I work out and a play group one day a week at Gilda’s Club with a Mother’s Day Out program at church for 3 hours one day a week as well. We just wash the crap out of their hands and it has become expected by them to wash hands A LOT!!!

With the weather getting warmer both of the kids get irritated on the days that it rains or is cold (gotta love Crazy Kentucky weather) but with temporary tattoos, movies, books, dancing and music we pass the time on bad weather days.

We did go to Orlando the week of Spring Break and went to the beach and Sea World. I will post pics and write another post just on our trip.

Hope everyone is doing well! Thanks for all the prayers, they are working.

ViviAnne's 3am Conversation

So, there are a lot of nights when ViviAnne will wake up around 3 and stay awake for an hour. And since I am usually in bed with her already from her 11PM wake up she wants to talk, I know shocker.

This morning was a talk I allowed her to have and didn't once ask her to please be quiet and go back to sleep. She started telling me that she did not want to match her Papa any more that she wanted to match me again. (Her hair.) She said she was so beautiful when we got her hair cut like mine (back in August) and she wanted to be again. I assured her she IS beautiful and that her hair is growing back and she and I will match again. Then she started to tear up and she yanked her sleeping hat off and said very sternly, "no it is not! Look! I don't have my blonde hair yet! I look like Papa! And he said we need to match and I don't want to get my hair cut tomorrow!" She said she heard Papa say that she was going too when we take Cooper an Brent to get hair cuts on Saturday and she thought she would be getting her hair cut as well. So I pulled out my assuring mommy tone and said, "I make the decisions on your hair, not Papa, and I say we will not be getting your hair cut tomorrow and you will not and do not match Papa any more. We are going to grow your hair long and you will match me." She dried her little eyes and said, "Okay, thanks. Yeah, Gramma makes the decisions for Papa so we'll just tell her that I'm not gonna match him any more." Then she gave me a hug and said, "I love you. Can you hold me?" And of course I did.

What a discussion to have with a three year old at 3AM! She was so articulate in her thoughts. She never was stumbled on her words or got worked up into a scream. For a moment I felt like I was talking to a 13 year old not a 3 year old. Well, atleast no one has to wonder how she feels on the matter. She is OVER not matching me.

8 months and 1 day

That is how long ago ViviAnne was diagnosed with ALL. I can't believe it has been that long. I can barely remember life before cancer. Cooper was only 17 months old when she was diagnosed and now he is full fledged 2. ViviAnne could not express to me exactly what hurt just that she hurt. Now she tells me, "my tummy hurts". MAN 8 months changes A LOT.

I thought back to when ViviAnne was 17 months old and a colic and reflux filled Cooper entered our lives. He never slept and rarely was calm. He remained like this for 6 months. So I barely remember ViviAnne changing from that sweet little 17 month old baby into a sassy strong willed 2 year old. It just happened. Now here I am again. I can not remember Cooper either from 17 months to 2 years old. ViviAnne was the demanding one this time. My hope is that one day I will lead a life where my entire family sleeps through the night all at one time. That both of my children will be healthy and active and I won't live in fear of germs, ports being damaged or strange bruises. Oh what a difference 8 months makes.

This weekend she did okay. Yesterday her eyes looked dark and she seemed a bit tired but she fought off a nap like a normal 3 year old. Today however she asked to take her nap at 12:30. Wanted jammies to be comfy in and everything. Those steroids and Vinchristine just knock her out for about 4-5 days. But at least she can get some rest. Her moods are not quite as bad this time. Well, the swings aren't as often I should say.

Spring is coming! I will be glad to let the kiddos ride their bikes and play outside. And so will they. ViviAnne has been telling everyone the past couple of days that, "this weather is crazy! It is supposed to be warm so we can play outside! Silly weather." Cooper made up a song. It is The Papa song. And well that is the whole song just sang at different intervals and pitches with arms stretched up to the sky. The boy LOVES his Papa. So at least there are some things to smile about. I'll take them when I can.

Counts are Up!

Written by Mommy

I took ViviAnne to the clinic on Friday morning to check counts and try to resume chemo. AND WE DID!!! Her counts were up to 1700 and she was looking good. She wakes up early on clinic days, just the anticipation of it I suppose. This clinic day she woke up at 4:30 AM! That is right 4:30 in the morning talking and ready to go. I of course was not soooo it made for a very long day!

She did wonderfully as usual. She explained to a nursing student that the reason she comes to the clinic is because she has cancer. It tears my heart apart everytime I hear her say that. She sat and chatted and made a building with blocks telling the nursing student about her port, Cooper, my rib breaking and me not being able to hold babies and on and on. She is always pretty easy to chit chat one on one with a woman.

Then we were off to the hospital to visit C.J. I had explained to ViviAnne that C.J. now has cancer too and he has a port and will be going to the clinic to see Dr. Ayyanar. She responded with "that's crazy!" I then explained that he too would be getting his port done by Francis (ViviAnne's FAVORITE nurse) and she then got this very serious look on her face and said, "No, not Francis I don't want to share Francis".

C.J. looked good. He was still nervous when we first walked in but once he figured out we weren't there to poke him or listen to him he sat up and smiled and teased his Mommy. It was nice to see him smile! ViviAnne brought him a sucker and he shared some chewies with her. It is great that they have one another. Crappy that it has to be like this.

Oh yeah. Friday Morning Cooper was supposed to go spend the day at Papa's shop because Kim was going with ViviAnne and I to the clinic. WELL he was sick. So Brent stayed home with him and played "Catch the vomit". I personally think he is a hero for taking on that job. Cooper wants his Daddy when he is sick though. They are snuggle buddies. Brent said the first vomit played out like this. He and Cooper were laying in bed, snuggling of course, when Cooper looked over at Brent and said, "Oh no!" Brent grabbed a towel to catch it just in time for Coop to throw up on Brent's arm. Poor guys! Needless to say we kept ViviAnne and Cooper seperated for the day. At around lunch time Cooper turned the corner and has been fine ever since.

I am trying to think positive. The weather is supposed to warm up and so my kids will get healthy and we can get back to a normal life until counts drop again which will hopefully not be for a very, very long time.

Special Prayers

On a very serious note:
This horrible disease has struck another member of my extended family. My cousin Greg and his wife Sheree are tending to little CJ at Kosairs this week. CJ is about 8 months older and ViviAnne thinks the world of him. He was just diagnosed with A.L.L. also. The protocol is little tougher on boys. So please place them in your prayers.

I have asked Stacey to remove the ChipIn widget from our blog. If you still feel inclined to show your support, please consider contributing to CJ's Treatment Fund. We have been truly blessed by all of your love and support and will be making every attempt to pay it forward.

Stacey has created a similar blog for CJ.
http://bravecj.blogspot.com/

Thank you all.

Brent

Update from Daddy

Update from Daddy

Well it has been a week since our last update. I take the blame for that as it appears that I am the last one standing.

To recap:
2/19 Cooper – Pediatrician: RSV
2/22 Cooper – Hospital: Puncture Wound
2/23-2/26 ViviAnne - Hospital: Fevers & RSV
2/28 ViviAnne - Pediatrician: Counts
3/03 ViviAnne – Clinic: Counts to low No Treatment.
3/04 Kristen – Hospital: Broken Rib

Yes a broken rib! I swear God is looking down and cackling “Dance Monkey!!!”

She had been coughing for 4-5 weeks continually getting RSV I suppose (see above). Her side had been sore for a few days like a pulled muscle. Then Kristen called me at work muffled and crying “Can you come home...I coughed...something popped...I hit the floor and can't move.” I said “Maybe Later”...not really. I rushed home. Cooper met me at the top of the stairs naked from the waste down. ViviAnne said "Daddy hurry something popped out of Mommy." I find Kristen laying on her side positioned like the statue of liberty between the bed and the dresser. Her cell phone in her hand. Cooper's toy cellphone laying at her head. Evidently I missed a pretend 911 call from ViviAnne telling me that Mommy was down and I needed to come home right now. Followed by a “Yeah” “Okay” and “Don't worry Mommy daddy is on his way.” As I came around to her side I stepped into a pile of lotion in the carpet which brought to my attention that she was covered in lotion. All hell had evidently broken lose on my way home. Kristen couldn't move to fight them off. They doused her in lotion to help the pain, ViviAnne rushed and made a Get Well Card, Coop pee'd himself and even worse cleaned it up himself. It was like “Lord of the Flies” in my bedroom.

A very special thanks to Mom and Stacey for ridding us of kids for a few days so she could start to recover. Kristen is moving a round a bit better this week. I think she over did it today though. She looked to be in a lot of pain when I got home from work.

To say the least I'm walking on egg shells constantly wondering what is going to get me. Will it be one of the branches from the ice storm still dangerously looming at the top of the tree, or maybe something as random as a low flying bird, maybe bird-flu, or restless leg syndrome.

I'm due.

Quick Update from Mommy

I took ViviAnne to the clinic today. Her ANC dropped to 500! So more home bound for us! I am very upset by this. Too upset to even express my emotions. I need to sit and be quiet to sort them all out. But as you can imagine I don't get many opportunities for that.

I will tell everyone this; she will not resume chemo until March 13th if her counts are up by then. A full 2.5 weeks with no chemo!!! Not a good thing in my book. She complains about her knees and back hurting here and there too. I'm nervous and scared and mad and AAAGGGHHH!!!!! That is all I can say for now.