Counts Update

I took ViviAnne to the pediatrician again this morning for a counts check and to make sure she is still recovering. Her cough is getting more and more spaced out and there is just a tiny bit of crackle in her lungs. Her ANC was 810 this morning. So the counts are coming up, VERY slowly but coming up none the less. She is pretty worn out. 2 hour naps everyday and still asleep by 8:30PM at the latest. And that is with her wanting to put her jammies on at 7PM. She just wears out. That too should pass with counts coming up and the RSV ending. Just in time to receive another round of steroids and IV push on the 13th. If it was like last month that will wipe her out too with more naps and early bed times. 

She is VERY irritable this week. I'm sure it is just the combination of hospital stay, 2 trips to the doctor and being sick AND low blood counts. Still, it is trying on our patience. Her tone and mouth are the worse! She isn't violent or anythng just incredibly sassy. I call her Judy Attitudy when she is like this. It is my one way of trying not to snap her head off! Sometimes I succeed and other times I don't.

As she was sitting on the floor crying today just from being overwhelmed and worn out she said to me, "I don't like 3!" and I replied, "That makes two of us honey!"

Released

Well at the late hour of 10PM ViviAnne and I left Kosairs. We were in isolation the entire time which meant no playroom or really visitors either. She was incredibly stir crazy and ready to go home as was I.

Here is what we know. Her ANC is only 460 so she is home bound again. Her platelets and HMG are low too but no need to transfuse as long as they maintain where they are. If her HMG drops more she'll need a blood transfusion. SO they are holding her chemo until her counts come up. I will be taking her to the pediatrician tomorrow for a counts check and to make sure she is doing okay. Then back to the clinic next week for a recheck and to see if we can resume chemo. Of course the scare of relapse is always on the radar but I think with the high fevers and prolonged cough her body just gave out and that is the cause for her counts to go into the toilet. I HOPE and PRAY that is the case and that we can get chemo going again next week. But as always no hard core answers on what all this means. Just educated guesses. Keep ya posted.

Update

Update from Aunt Stacey

ViviAnne is still at the hospital. She tested positive for RSV today. I'm not sure why it did not show up yesterday, but it did today. She is still getting fevers and they will not release her until she has gone at least 24 hours with out one.

From what I understand the doctors are concerned but not alarmed. They are primarily just concerned about getting the fevers to stop and are hesitant to send her home until that happens.

Kristen said ViviAnne is doing okay, the not feeling good comes and goes. She is primarily just bored since she is not allowed to go to the playroom since she is sick. Kristen is trying to keep her occupied with movies and games.

Grammaw is helping Brent out with Cooper. He is doing fine by the way, the cut on his head is healing with no complications.

What a week for Brent and Kristen. I wish I could take all these problems away from them.

I'll update again tomorrow.

Back in the Hospital

Update from Grammaw

ViviAnne is back in the hospital.  She woke up with a fever 4 am this morning and was admitted back at Kosair 5 am today.  She will spend the night.  At last update, she did not have a virus, no RSV, still waiting for her chest xray.  She has had a cough for over a week and they are afraid it may turn into pneumonia.  She is on IV antibiotics and fluids.  Better safe than sorry.  If all goes well she will probably come home tomorrow or the next day.

She's not enjoying this hospital stay because everyone has to wear a mask and she cannot go to the playroom.  REALLY?!! I'm sure she is enlightening them on that rule! All for her best interest though! 

Mommy and Daddy at least got to visit with friends in Lexington for Saturday and Saturday night.  They got home in time to go to a baby shower where Cooper fell and cut his head.  Kristen had him at the emergency room to check him out, got home went to bed and returned with ViviAnne a few hours later. Cooper is fine, he didn't require any stitches. 

Below is a video from Saturday night. Enjoy!

**you may need to upgrade the latest version of flash to view the video.

Eat it Coop! from stacey downey on Vimeo.

Treatment and Preschool

Last Friday ViviAnne went to the clinic for a Vinchristine IV Push and started another 5 day pulse of steroids. She also had a cold but the doctor said her lungs sound fine so as long as she remains the same and progresses to recover in the next 2 weeks everything will be fine. But all of that left her feeling VERY tired all weekend and rather cranky. SO we only went to the YMCA on Saturday and then the rest of the weekend she stayed low key.

She is off steroids now. The food craving this time was Peanut Butter and Jelly with no crusts cut into triangles. Easy enough! But today will be the last day I allow her to only eat that! Her belly is hurting tonight and she is having a little constipation but I think we are ahead of it so it shouldn't get as bad as it has in the past.

Cooper is terribly sick. I took him to the doctor yesterday and he said it looks like RSV. Which both kids had last winter and Cooper did breathing treatments for but this year he isn't as bad, largely due to his age. SO it is just a very bad cold. Which he has proceeded to give BACK to me. The three of us, ViviAnne, Cooper and myself, have the exact same sounding cough that is more annoying than anything else.

I kept Cooper home from Mother's Day Out but allowed ViviAnne to go (we call it her preschool) and I got the BEST report on her today. Her teacher called her "a ray of sunshine for the other little girls in the class". Apparently she gets all the little girls playing together even the one little girl who is incredibly shy will interact with ViviAnne! How great is that? She orchestrates the play group and they all are just drawn to her. I was afraid it would be the opposite since she is bald so this just made me light up inside. It also made me feel like ViviAnne really is the sweet girl I always knew she could be. And a leader.

Then on the the way out the music lady said ViviAnne learned all 3 songs and the dance moves in just the 3 weeks she has been attending and that now kids who used to not sing and dance do b/c the just follow ViviAnne. Also, she is the loudest singer (shocker!) but she did say ViviAnne dances to the beat very well.

I was so overcome with joy when I left preschool today. Knowing that I have stories that are "normal" three year old stories to share and not what has been the normal story for us with her, which is "she is so brave! she doesn't even cry when they stick her finger!"

Beautiful Girl

Pics from Aunt Stacey

Busy Week

Sorry we have been slacking on the blog posts. This week has been a great week! ViviAnne and Cooper both went to the YMCA with me 3 times this week. This is the first week in 7 months that this has happened! Both of the kids LOVE it there so it was a great step back into a normal life for us and both of the kids loved having it return to us as well. With ViviAnne's low immune system and intense chemo the past 6 months things such as the YMCA were off limits to her and so we made them off limits to Cooper as well, to lessen her chances of getting sick. And it worked but it was very hard.

The past month I have been trying to let her lead a normal life but that has not been easy. Every day I think, "well, let's just wait one more day." I am mixed with fear and excitement at a semi normal life. But this week I took the plunge. I enrolled her in preschool for the fall, took her to the YMCA AND on Thursday both kids went to a Mothers' Day Out program at church from 9-12. They are seperated by age so the two of them were not in the same room, like they are in the YMCA. This was a HUGE step for all of us. (Well, maybe more me than them but whatever.) 3 whole hours with NO kids. I didn't know how to act! I suppose I'll get the hang of it though. :)

Cooper walks into the room like he owns it and ViviAnne was so excited to go to "school" and meet new friends. She did ask if they had ports and if they knew she wouldn't have hair but she did okay with the fact that they do not have ports and that they all have hair and not her. When I picked her up her teacher said, "she is so sweet. And she played so well with all the little girls. She would just lead them all into playing with all sorts of things!" Big shock, ViviAnne is sweet and is quiet the little leader. Which works well if other children will follow, if not then she will try to MAKE them follow. It can be trying at times with her to realize she is NOT the boss. Cooper's report is always the same. Sweet, funny and very verbal. Which he is all of these things!

Thursday night Brent and I took ViviAnne to a YMCA dinner to help with their Spirit Campaign. It is a wonderful program that helps people who can not afford camps and memeberships to still get to attend with the Spirit Program. We have been extended a memebership at our local YMCA through this program and we are SOOOO THANKFUL for that. If it weren't for the Spirit Campaign and the people who donate to it our family would not be able to afford a YMCA membership and our family would not be complete. So we of course said yes we would be willing to share our story to the crowd of 250+ of what the YMCA and the Spirit Campaign means to us. It was great. Brent and I both teared up on stage as we shared our story of ViviAnne's diganosis,how we had been YMCA members for a year prior but had to terminate our membership b/c of cancer and how giving us a membership through the Spirit Program gave us back something that cancer had taken from us. ViviAnne did wonderfully and was such a little lady all night. She was polite and sat with her fancy dress and napkin in her lap being so great. She did hit the wall around 8, when it ended and all the people coming up to talk to us just overwhelmed her so we said our good byes and left. It truly was a great night and a WONDERFUL program. We are so thankful!

THEN on Friday morning ViviAnne went to Kosair's to talk on the radio. She was on 102.3 and she told them (with absolutely NO coaching) that the reason she comes to the hospital is because she has cancer. I nearly dropped to floor to hear her say this. All I had told her was we were going to the hospital to talk on a microphone to people. That was it, the rest was all her. She said things like, Cooper is 2 and doesn't go to the clinic, and I have cancer and I am 3 and my name is ViviAnne! It was amazing to watch. Then on 99.7 she wasn't much into talking so I did all the talking. It was really a great way to help raise awareness for the hospital and help such an amazing place raise money as well. They said they'd probably contact us again in 2 weeks or so for her to help with another fund raiser and I said that was fine. So, we'll see.

All in all it has been a busy week and NO chemo. This is a new kind of busy for me. One I am a bit anxious about but I think I will grow to enjoy. Thank you all for your support and prayers the past 7 months. We still have 2 years to go, as most of you know, and we will continue to pray for you all as well.

We have Power...
 
Like many other families in the Louisville area we were without power from early Wednesday morning until late Saturday afternoon. There are still many, many people without power so I feel fortunate that we have it back so soon. We bunked with my Mom who never lost power while Brent and his Dad ran a generator to keep Kim and Gary's house semi-comfortable. Their power came on last night too so we are all up and running. 
 
In the midst of all this freeze and no power ViviAnne went to clinic yet again Friday. (3 weeks in a row) This time her counts were GREAT! She looks good and has a bit of what is called "the 6MP rash". It is a little reaction from her chemo pill and is worse in the winter months. Moisturizer is the only thing that will help. It comes and goes like the wind and there is nothing to be conscerned about. Phew, another bullet dodged. She did get her Spinal Tap done with chemo into her spine on Friday. The fluid dripped out fine and looked clear. They ran I.V. fluids for about an hour prior to doing the tap to give her a little extra. She has a bad bruise from it now but I think everything is fine. 
 
She woke up from her sedation with her normal loving self. She kept hugging me and told me she loved me and even asked her famous question, "what's your name?" to the recovery nurse. Then all of the sudden when she was more coherent from the sedation she got angry. I mean screaming until red in the face fighting me angry. This can be a side effect of the sedation to make them cranky but this was a whole new level. One I hadn't seen from her since the very begining so I was conscerned. The nurses decided to wait on de-accessing her port until she calmed down. And about 30-45 minutes later it was like the switch flipped again. She and I were sitting on her bed playing finger puppets and she said she'd like to call the nurse to do her port now. So we did and the Debbie came in and de-accessed her port and ViviAnne said "that was fast". So, then we left. She took her signature nap in the car and for another hour there after and we were fine. 
 
Friday was also Cooper's 2nd birthday. I spent the remainder of the afternoon with just the two kids playing and hanging out but we did nothing for Cooper's birthday. No cake, no party, nothing. ViviAnne did tell the nurses it was Cooper's birthday and so someone from Child Life Services brought her 3 mini sport balls in a gift bag to give to Cooper from her. So she did and he loved them and she loved giving him the present, just from Sissy. But other than that his birthday just kinda came and went. He walks around and tells you "I 2!" with delight and so if there was a birthday to overlook, this is the one. We had not planned a party anyway, it was my fault the cake didn't happen and I do feel bad even though I know he has no idea. Next year, right? Happy Birthday, COOP!
 
Hope everyone is staying warm.