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!!!