Where has the time gone?

Sorry it has been so long since our last post. I can’t believe we’ve neglected the blog for a month! Rest assured we will do our best to not let this happen again.

Let’s see, where do I begin? Well, ViviAnne received her Vinchristine and Spinal Tap with Methotrexate on April 10th and did wonderfully. She was a little pissed when she woke up from the spinal tap but this has become to be expected. Her initial wake up is always the same, “Mommy, I love you. How are you? You have two eyes.” The last part she means two SETS of eyes. And then once she becomes more coherent she doesn’t remember helping to push in her meds, because that is the highlight for her getting to help push, and she becomes angry because she doesn’t remember pushing it and thinks she hasn’t done and needs to do it. Remember, a change in the routine freaks her out so her not remembering a big part of the routine and the nurses and me telling her that she did in fact do it makes her little 3 year old groggy brain flip and she gets MAD! But once this wears off she is back to her normal self, just sleepy.

She was VERY irritable on Easter and all weekend due to the steroids SO we made the most with what we had. She did get to wear her fancy dress and go to church and did an Easter Egg Hunt at Grandma’s. She was bummed the eggs were empty BUT she still had a good time. Cooper of course did great at finding the eggs because he didn’t care of they were empty or not.

We have been getting along as best as we can. We have found our own rhythm in the house and it is probably different than others but that is okay. It works for us. She and Cooper are enjoying a semi-normal childhood with trips to the YMCA 3-4 times a week while I work out and a play group one day a week at Gilda’s Club with a Mother’s Day Out program at church for 3 hours one day a week as well. We just wash the crap out of their hands and it has become expected by them to wash hands A LOT!!!

With the weather getting warmer both of the kids get irritated on the days that it rains or is cold (gotta love Crazy Kentucky weather) but with temporary tattoos, movies, books, dancing and music we pass the time on bad weather days.

We did go to Orlando the week of Spring Break and went to the beach and Sea World. I will post pics and write another post just on our trip.

Hope everyone is doing well! Thanks for all the prayers, they are working.

ViviAnne's 3am Conversation

So, there are a lot of nights when ViviAnne will wake up around 3 and stay awake for an hour. And since I am usually in bed with her already from her 11PM wake up she wants to talk, I know shocker.

This morning was a talk I allowed her to have and didn't once ask her to please be quiet and go back to sleep. She started telling me that she did not want to match her Papa any more that she wanted to match me again. (Her hair.) She said she was so beautiful when we got her hair cut like mine (back in August) and she wanted to be again. I assured her she IS beautiful and that her hair is growing back and she and I will match again. Then she started to tear up and she yanked her sleeping hat off and said very sternly, "no it is not! Look! I don't have my blonde hair yet! I look like Papa! And he said we need to match and I don't want to get my hair cut tomorrow!" She said she heard Papa say that she was going too when we take Cooper an Brent to get hair cuts on Saturday and she thought she would be getting her hair cut as well. So I pulled out my assuring mommy tone and said, "I make the decisions on your hair, not Papa, and I say we will not be getting your hair cut tomorrow and you will not and do not match Papa any more. We are going to grow your hair long and you will match me." She dried her little eyes and said, "Okay, thanks. Yeah, Gramma makes the decisions for Papa so we'll just tell her that I'm not gonna match him any more." Then she gave me a hug and said, "I love you. Can you hold me?" And of course I did.

What a discussion to have with a three year old at 3AM! She was so articulate in her thoughts. She never was stumbled on her words or got worked up into a scream. For a moment I felt like I was talking to a 13 year old not a 3 year old. Well, atleast no one has to wonder how she feels on the matter. She is OVER not matching me.

8 months and 1 day

That is how long ago ViviAnne was diagnosed with ALL. I can't believe it has been that long. I can barely remember life before cancer. Cooper was only 17 months old when she was diagnosed and now he is full fledged 2. ViviAnne could not express to me exactly what hurt just that she hurt. Now she tells me, "my tummy hurts". MAN 8 months changes A LOT.

I thought back to when ViviAnne was 17 months old and a colic and reflux filled Cooper entered our lives. He never slept and rarely was calm. He remained like this for 6 months. So I barely remember ViviAnne changing from that sweet little 17 month old baby into a sassy strong willed 2 year old. It just happened. Now here I am again. I can not remember Cooper either from 17 months to 2 years old. ViviAnne was the demanding one this time. My hope is that one day I will lead a life where my entire family sleeps through the night all at one time. That both of my children will be healthy and active and I won't live in fear of germs, ports being damaged or strange bruises. Oh what a difference 8 months makes.

This weekend she did okay. Yesterday her eyes looked dark and she seemed a bit tired but she fought off a nap like a normal 3 year old. Today however she asked to take her nap at 12:30. Wanted jammies to be comfy in and everything. Those steroids and Vinchristine just knock her out for about 4-5 days. But at least she can get some rest. Her moods are not quite as bad this time. Well, the swings aren't as often I should say.

Spring is coming! I will be glad to let the kiddos ride their bikes and play outside. And so will they. ViviAnne has been telling everyone the past couple of days that, "this weather is crazy! It is supposed to be warm so we can play outside! Silly weather." Cooper made up a song. It is The Papa song. And well that is the whole song just sang at different intervals and pitches with arms stretched up to the sky. The boy LOVES his Papa. So at least there are some things to smile about. I'll take them when I can.

Counts are Up!

Written by Mommy

I took ViviAnne to the clinic on Friday morning to check counts and try to resume chemo. AND WE DID!!! Her counts were up to 1700 and she was looking good. She wakes up early on clinic days, just the anticipation of it I suppose. This clinic day she woke up at 4:30 AM! That is right 4:30 in the morning talking and ready to go. I of course was not soooo it made for a very long day!

She did wonderfully as usual. She explained to a nursing student that the reason she comes to the clinic is because she has cancer. It tears my heart apart everytime I hear her say that. She sat and chatted and made a building with blocks telling the nursing student about her port, Cooper, my rib breaking and me not being able to hold babies and on and on. She is always pretty easy to chit chat one on one with a woman.

Then we were off to the hospital to visit C.J. I had explained to ViviAnne that C.J. now has cancer too and he has a port and will be going to the clinic to see Dr. Ayyanar. She responded with "that's crazy!" I then explained that he too would be getting his port done by Francis (ViviAnne's FAVORITE nurse) and she then got this very serious look on her face and said, "No, not Francis I don't want to share Francis".

C.J. looked good. He was still nervous when we first walked in but once he figured out we weren't there to poke him or listen to him he sat up and smiled and teased his Mommy. It was nice to see him smile! ViviAnne brought him a sucker and he shared some chewies with her. It is great that they have one another. Crappy that it has to be like this.

Oh yeah. Friday Morning Cooper was supposed to go spend the day at Papa's shop because Kim was going with ViviAnne and I to the clinic. WELL he was sick. So Brent stayed home with him and played "Catch the vomit". I personally think he is a hero for taking on that job. Cooper wants his Daddy when he is sick though. They are snuggle buddies. Brent said the first vomit played out like this. He and Cooper were laying in bed, snuggling of course, when Cooper looked over at Brent and said, "Oh no!" Brent grabbed a towel to catch it just in time for Coop to throw up on Brent's arm. Poor guys! Needless to say we kept ViviAnne and Cooper seperated for the day. At around lunch time Cooper turned the corner and has been fine ever since.

I am trying to think positive. The weather is supposed to warm up and so my kids will get healthy and we can get back to a normal life until counts drop again which will hopefully not be for a very, very long time.

Special Prayers

On a very serious note:
This horrible disease has struck another member of my extended family. My cousin Greg and his wife Sheree are tending to little CJ at Kosairs this week. CJ is about 8 months older and ViviAnne thinks the world of him. He was just diagnosed with A.L.L. also. The protocol is little tougher on boys. So please place them in your prayers.

I have asked Stacey to remove the ChipIn widget from our blog. If you still feel inclined to show your support, please consider contributing to CJ's Treatment Fund. We have been truly blessed by all of your love and support and will be making every attempt to pay it forward.

Stacey has created a similar blog for CJ.
http://bravecj.blogspot.com/

Thank you all.

Brent

Update from Daddy

Update from Daddy

Well it has been a week since our last update. I take the blame for that as it appears that I am the last one standing.

To recap:
2/19 Cooper – Pediatrician: RSV
2/22 Cooper – Hospital: Puncture Wound
2/23-2/26 ViviAnne - Hospital: Fevers & RSV
2/28 ViviAnne - Pediatrician: Counts
3/03 ViviAnne – Clinic: Counts to low No Treatment.
3/04 Kristen – Hospital: Broken Rib

Yes a broken rib! I swear God is looking down and cackling “Dance Monkey!!!”

She had been coughing for 4-5 weeks continually getting RSV I suppose (see above). Her side had been sore for a few days like a pulled muscle. Then Kristen called me at work muffled and crying “Can you come home...I coughed...something popped...I hit the floor and can't move.” I said “Maybe Later”...not really. I rushed home. Cooper met me at the top of the stairs naked from the waste down. ViviAnne said "Daddy hurry something popped out of Mommy." I find Kristen laying on her side positioned like the statue of liberty between the bed and the dresser. Her cell phone in her hand. Cooper's toy cellphone laying at her head. Evidently I missed a pretend 911 call from ViviAnne telling me that Mommy was down and I needed to come home right now. Followed by a “Yeah” “Okay” and “Don't worry Mommy daddy is on his way.” As I came around to her side I stepped into a pile of lotion in the carpet which brought to my attention that she was covered in lotion. All hell had evidently broken lose on my way home. Kristen couldn't move to fight them off. They doused her in lotion to help the pain, ViviAnne rushed and made a Get Well Card, Coop pee'd himself and even worse cleaned it up himself. It was like “Lord of the Flies” in my bedroom.

A very special thanks to Mom and Stacey for ridding us of kids for a few days so she could start to recover. Kristen is moving a round a bit better this week. I think she over did it today though. She looked to be in a lot of pain when I got home from work.

To say the least I'm walking on egg shells constantly wondering what is going to get me. Will it be one of the branches from the ice storm still dangerously looming at the top of the tree, or maybe something as random as a low flying bird, maybe bird-flu, or restless leg syndrome.

I'm due.

Quick Update from Mommy

I took ViviAnne to the clinic today. Her ANC dropped to 500! So more home bound for us! I am very upset by this. Too upset to even express my emotions. I need to sit and be quiet to sort them all out. But as you can imagine I don't get many opportunities for that.

I will tell everyone this; she will not resume chemo until March 13th if her counts are up by then. A full 2.5 weeks with no chemo!!! Not a good thing in my book. She complains about her knees and back hurting here and there too. I'm nervous and scared and mad and AAAGGGHHH!!!!! That is all I can say for now.

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. 

No Spinal Tap Again

Note from Aunt Stacey:

Kristen asked me yesterday to post the update below. Sorry I just got to it now. Also, Brent and Kristen both are miserable with the Flu today. Not sure if they got it from Coop or not. They shipped the kids off to Nana's for the day to give them a rest and avoid infecting or re-infecting the kids. I spent the day with ViviAnne the other day when Coop was sick and have tons of pics to post. Check back later this weekend to see them:)

Also, fundraising for ViviAnne's treatment has not ended. The PayPal/Chip-In widget to the right of this page is incorrect. I'll work on getting that fixed ASAP.

Written by Mommy

I took ViviAnne to the clinic at the bright and early hour of 8AM to have her counts checked and repeat her spinal tap. If you notice below it did not work properly last week. Well, the doctor there today said that steroids, in her experience, can cause the spinal fluid to dry up some so if her fluid was not wanting to run/drip before steroids and she just ended steroids yesterday then the chances of it running/dripping today were slim. The ultimate decision was mine, but I opted to not even attempt the spinal tap to then have the chance of having to attempt to do it again next week. Three weeks in a row of spinal taps was more than I cared to tackle. So, I said we'll see ya next week. She will continue with her oral meds at home and the steroids are over until next month. She is feeling pretty good and her spirits are up. The steroids have made her belly pooch and her cheecks rosey so she looks healthy and happy. And I think, all in all, she is. 

Cooper is feeling better. For those of you who don't know he was throwing up all weekend. He still doesn't have much of an appetite but he is doing tons better. No one else in the house caught what ever it is that he had. We did send a stool sample to the lab to try and figure it out. He ate some recalled peanut butter crackers last week so the possiblity for salmonella, all be it slim, is still there. With no one else in the house sick it makes me wonder. 

All in all we are weathering it okay. I would not have said that 2 weeks ago. 2 weeks ago I felt like I had hit this wall and the wall won! But I've been to a therapist provided by the Cancer Research Center and she is great so with her help I am hoping to get back to feeling like a normal, calm Mom again.  Time will tell. 

Maintenance

Well we went to the clinic today to begin maintenance. And she did even though her ANC is 850. That is high enough to press on with chemo. She did well. We were able to see Jessi, a young 11 year old boy who was diagnosed within a week of ViviAnne. He is the kindest most gentle boy with her. While other 11 year old boys would not give her a second thought he lets her play on his video games and laughs with her a lot. He is too much. And ViviAnne adores him. So that was her highlight of the week, I'm sure!

After her Vinchristine push at clinic we headed over to the hospital to do her spinal tap. After 3 needles and about 7-8 sticks her spinal fluid would not flow and so Dr. B was not able to perform her chemo or send fluid off to pathology. We are scheduled to back Thursday of next week to try again. I asked, "what does this mean?" and he responded, "Nothing. It is not good or bad it just is." So that eased my mind some. I've been watching her pretty closely to make sure the multiple sticks aren't hurting her tonight. She seems to be okay. A bit dizzy when we left the hospital but after a nap that too passed.

When I went to pick up her MANY prescriptions today with very specific instructions with each drug the young female pharmacist came over to the counter to talk with me. She said that if this was her daughter and she was picking up all these drugs with this detailed of instructions that she would be over whelmed. I had already gone to my Mom's and gone over each prescription and wrote them down in a notebook. I took my notebook out at the pharmacy to double and triple check the drugs. The pharmacists said, "wow, you've got this down." And I responded, "I'd better. It is her life for the next 2 years." She started to tear up. You know it is bad when your pharmacists admitts it is overwhelming. And that is just the tip of the iceberg.

Good News for a Change

Written by Daddy

ViviAnne’s clinic visit today was very optimistic looking forward.  All her counts are up including her platelets and hemoglobin.  Her ANC (which controls her body’s ability to fight of infection) has creeped up to around 1050.  For reference, 1000 is homebound and 500 is locked down; New Years Day ANC was 16.  She is scheduled to have another spinal tap Friday which kicks off the maintenance phase of her treatment.

Maintenance chemotherapy - Chemotherapy given in lower doses to assist in prolonging a remission.  This will last 18 months but will typically be monthly visits as opposed to the weekly (2-3 times a week) that we have been currently undergoing.

In February, she will be able to start going to some normal kids functions like mother’s day out, Sunday school, and the YMCA (“Fun” as she used to call it.)

We know that we are nowhere near being out of the woods and that relapse is always looming over us.  But for today the news is good and we take celebration in a small victory.  Thank you again for all of your considerations and support for our families. Your prayers are working please keep them up.

Quick Update

I took ViviAnne to the clinic again today. Her platelets have come up some with no need for transfusion, thank goodness, and her ANC came up to 500. SO she is still home bound but she is hopefully on the climb up and will not fall back down again for some time. Her HGM is still only 7.9 and that is with the blood transfusion from Saturday. I was hoping for a big leap because you can tell in her eyes she is just wiped out. But like a little trooper she is up and playing. Because as a 3 year old, that is what she wants to do, PLAY! They checked her urine again today and there is still blood in it but not enough to send off any big alarms. We still don't have the C.T. results back from Saturday to know what is going on with her kidney stones but we should have those soon. We go back to the clinic on Wednesday for another counts check and urine check. Hopefully (fingers crossed) everything will come back up and clear. 

She is scheduled to begin Maintenance on the 16th of January as long as all of her counts are high enough. We shall see. A week delay in starting the next phase is not a big deal either. That is the answer I was given today at least. So, we're home and if she a has a good night tonight, the night terrors are back from her over night stay in the hospital, we might go to Gilda's Club for their preschool play tomorrow. We'll see. 

Home at Last!

I took ViviAnne to have her counts checked Friday morning and they were all down. Considerably down. For about 5 days her urine was been VERY dark almost brownish but we had dipped it earlier in the week and it was fine. Well Friday evening I dipped it and it showed blood in her urine. With an ANC of only 400, platelets of 45 and HMG of 7.8 this concerned me. I called the doctor and they said to bring her in to the hospital. After testing her counts had dropped further and the blood in her urine had cleared up to only a trace amount (which is okay) and she was doing okay with all the other blood work (I'll spare you the details of those) and it appeared she has no infection or virus. So they landed on the blood being from her kidney stones. SO they gave her a blood transfusion and did a C.T and let us go home. Which is good because without a hard core answer is was nice to be allowed to go home since she looked good and all preliminary testing looked good.

Her ANC is only 16 now and her platelets are now 35 so she will go back to the clinic on Monday for another transfusion of platelets since she got her blood today. She is resting on the couch and doing okay. We left her port accessed because it took multiple sticks to get it done correctly in the past 24 hours and I couldn't see taking it out to have to put it back in within the next 48 hours. The Doctor agreed. YAY!

As to blood and marrow donations that some of you have inquired about, you can always sign up to do so in her honor but she can not get your blood b/c of the lengthy time it takes to process blood and the fact that we never know when she will need it. This is her 3rd transfusion and could be her last or could not be, no one knows. Also if she has received your blood in the past and she ever did need a bone marrow transplant then you (the blood donor) would no longer be a candidate to donate to her even if you are a match. So you can donate in her honor. I would.