Saturday, July 17, 2010

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.

Sunday, July 11, 2010

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.

Wednesday, July 7, 2010

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.