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 30th we celebrated Coop’s 3rd 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.
