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!!!