Joint Post from Mommy and Aunt Stacey

Mommy wrote...
It has been another great couple of days. These past couple of weeks have been so good that looking back on the weeks prior to them I can really tell ViviAnne wasn’t feeling as well as I’d thought. But there was never any signs until the vomiting started.

Anyway, enough about that…..Like I said she has been doing remarkably well the past few weeks. So well that yesterday I took she and Cooper along with Gramma to the Newport Aquarium to visit Aunt Stacey. It was a wonderfully full day with no tears or fits. She simply took it all in with wonderment and curiosity. It was great! And as an extra bonus there were only 2-3 other families visiting that day so we pretty much had the place to ourselves. Which was great; if it had been crowded she could not have gone!

She and Cooper enjoyed looking at all the colorful fish and were a little unsure of walking through the glass tunnels and/or over the glass platforms. ViviAnne was a bit startled when a BIG shark swam over our heads but all she did was hold tighter to my hand, no tears or anything. Cooper was quite funny with the glass bridges, he would stop dead in his tracks and baby step around the glass if he could. Aunt Stacey led both of them over one glass platform and he kinda shimmied across until it was close to the end then he ran. It was so funny. I love to watch the things they are afraid of because you can see the “what is that?!” look in their eyes. As we age, we definitely take for granted knowing what everything is around us, and forget that these little people are taking in the world for the first time ever! It was really something!!!


A quick note from Aunt Stacey...

Kristen did not have time to finish this post before ViviAnne had woken up and was calling out for her. She asked me to wrap the post up for her...

ViviAnne is doing amazing! I cannot tell you how full my heart is after spending the day with her and seeing her enjoying life like every child should be able to do. Just weeks ago she was so weak and her body so taxed by Chemo that she couldn't even sit up for very long by herself. I can remember one day we were absolutely ecstatic when she wanted to get down from the couch and lay on my back. She was too weak to stand and play so she laid on my back while I was on the floor and we pretended to be alligators and other animals. Just her wanting to play was a big deal to us. Fast forward to yesterday where she was literally tearing through the Aquarium, running from window to window too see all the different species, enthusiastically yelling out to all of us to come see. Watching her and Coop interacting is so heart warming. They just love each other so much and play together so well. When she was going through that horrible first phase of Chemo and steroids, she refused to let Coop anywhere near her. To see her back to loving on him and mothering him is such a good indicator of how she feels.

My mother-in-law, Doris (or DOWIS as ViviAnne says) is in town visiting and came along yesterday. She bought the kids some stuffed animals from the aquarium and they LOVED them. Coop even tried to ride his for some reason. They had a blast running around the plaza with them. They really liked the telescope (or SKELESCOPE as ViviAnne says) that they could look through to see the boats on the river or the buildings downtown. I'd be holding up ViviAnne so she could see through it and look down to find Coop had completely scaled half of the telescope base.

Doris went on and on about how well behaved the kids are. I think that says a lot about Brent and Kristen. Even through the stress of this horrible ordeal they have not lost focus on still teaching ViviAnne and Cooper how to be well behaved, sweet and polite children. I know they are still trying to figure out what their new "normal' is, and though things are going well now, they still have a long road ahead of them, but I am so proud how they have continued to be such amazing parents through the stress of it all.

I go home after days like yesterday and just feel so grateful and appreciative to have days like that. If anything, the last few months have taught me to thankful for ANY good days. Until Andy and I have our own babies, ViviAnne and Cooper are the most special people in our life. I am so proud and thankful for these ridiculously adorable bright blue eyed, blonde-headed little people. And even prouder of their parents.

A Great Week!

Written by Mommy

This week has been exceptionally good!! She has been in good spirits all week and appears to be a normal active 3 year old with thinning hair . She and Cooper have played well together all week and even though she is tired and poops out rather quickly around lunch time she is still happy and a joy to be with.

We went to the Urologist yesterday to check on her stones. No news of moving or improvement. After an X-Ray and an ultrasound they appear to be located in the same place. Next week she will go for another CAT scan to determine where they are next week and give the doctors a better idea of how to proceed. They are going to run blood work to see if the stones are by chance not caused by the chemo but rather the pituitary glands being over active (or under active I don't remember which) and possibly spilling too much calcium into her system creating the stones. She followed this up with "But this is very unlikely. It is like looking for a zebra on a horse farm." And I said "Oh, if you only knew how many times we've been told THAT over the past few months. Now I feel like that is just a red flag for yep this is what it is." But anyway I don't know which one is supposed to be worse. Side effect from chemo OR caused by the pituitary glands? ViviAnne LOVED the ultrasound. She just lied there and stared at the screen like "What is this weird movie?" And of course the Nurse Practitioner went on and on at how cute she is. I tend to agree. Her cheeks are chubby from this round of steroids and they are too cute!!

Just wanted everyone to know we are proceeding along nicely this week. She woke me up 2-3 times a night this week so I never had the chance to fear the worse. I saw her every couple of hours!!

Thank you all for all your love and prayers. It has been truly amazing and is really a big help in keeping our spirits up. We are praying for each of you as well. Last night during bed time prayers ViviAnne said "and thank you for no boo boos and thank you for everybody...." it was really sweet. (And if you know how she actually says 'everybody' you know how sweet this is for sure.)

Chemo Update

Written by Mommy

It has been awhile since we have updated on what she is doing treatment wise. She began her new round of chemo last week. She received her Vinchristine through her port and is continuing to take the 6MP pill at home. She was placed on steroids, only for 5 days thankfully, and is now taking Methotrexate at home in the form of a pill. The spinal tap will only be once this month instead of once a week. YAY! As Stacey mentioned she does have kidney stones and we are watching them to determine how they should be handled. They do cause her pain when they move and I don’t believe she has passed one yet. They have her on some meds to try and ease with the passing of the stones, no pain meds but something to try and make it easier.

To be completely honest with you, giving her chemo on a daily basis is starting to get to me. I keep thinking and telling myself, “This is to make her better. Yes they make her feel like crap but it is for the best in the long run.” But still I used to think of chemo as this thing Doctors did; not something I would ever be giving to someone, especially my own daughter. It kind of messes with your head and serves as a daily reminder that yes, she is sick and in the fight of her life, literally.

Everyone asks “how is she?” and I usually respond with “She is doing fine.” And well, I am not so sure that is the case. She is sleepier than a normal 3 year old. She has her moments of panic when I don’t know what is wrong with her and she has her normal playful moments as well. All along I’ve thought “she is breezing right through this we are so lucky!” but now with the kidney stones being caused by the chemo I am having second thoughts on that. Maybe her little body isn’t breezing through this and either it is her age and/or my own inability to handle this that I am not realizing how she really is. She is sick! And I know that, but living the day to day with a child who has Cancer is the hardest thing I hope I ever have to do. I find myself retreating to a place in my head where there is no cancer and she is just fine and this is just like a bad flu or something. And then she throws up or her hair lands in my hand and the harsh reality slaps me in the face. The reality of even though none of us are promised tomorrow my daughter really only has an 85-90% chance of making it out of this successfully, baring nothing out of the ordinary goes wrong. Now, I know those are great odds, the best you can get even, but up until this point the odds have not been in our favor even when we’ve been told that they were. SO I go through the motions of pill after pill, holding her, talking to Cooper and trying not to lose my mind and my marriage with all this. I pray the entire way down the hall when I wake up in the middle of the night or early in the morning and she actually hasn’t woken me up yet. I pray that she is still alive. I pray that she is just having a good night’s sleep; one that is not filled with night terrors of being poked or scanned or being fretful from not feeling well; one where she dreams of happy things like the zoo and the beach.

The past 2 months have been the longest ones of my life yet it seems like a lifetime ago that she was diagnosed. Our previous life really is gone forever and that is okay but we still haven’t really figured out this new one. I mean I know the counts rules and the fever rule and I have the medication schedule worked out but how to actually DO this I have yet to figure out. How to DO this life and it be a life that doesn’t drive me down into a deep pit or tear my family apart I have yet to figure out. I think we, Brent and I, both feel like we are drowning and keep fighting to come up for air to only have the air be full of bad stuff and so back down we go. Even the “our time” which is very little is still filled with Cancer talk and/or how many times Cooper fell down this week. (His faced is bruised now from falling onto his face off of the stairs in the garage. OUCH!) But it is all I can think about. It is all I do. I can’t even clean out a closet, do the laundry or make a dinner without the thoughts of how my children are doing with Cancer staying in my head. How is ViviAnne REALLY doing and how is Cooper coping with his Mommy being taken away from him with no warning for 4 days at a time? Will I ever get to be the Mom I always wanted to be? After last week, it doesn’t appear as though I will any time soon.

So in this deep pit where I am currently residing I happened upon a scripture in a book a dear friend gave to me for my birthday this year. I don’t read this book nightly just pick it up from time to time when I think about it. Well, tonight ViviAnne is so tired from Chemo that bedtime was early and fast so I picked it up. And here was the very first thing I read at a random page I turned to. 

“Moments of darkness in our lives may be caused by the death of a loved one, the loss of a job or a home, or another great tragedy of life. Yet there is a greater darkness than these tragedies: the darkness in the eyes of one who has not felt God’s love, grace, and the assurance of his hope. There is hope for all of us. There is light. Jesus Christ, the Son of God, is our hope and light in the darkness.”

—Margaret Fishback Powers. 

“For you were once darkness, but now you are light in the Lord. Live as children of light.”—Ephesians 5:8 

HUH, I guess my Nana is right, God really is everywhere and has His hand in each and everything we do, all we have to do is be receptive to it. This is just what I needed coming off of 2 really bad weeks. Thanks, God.

Home From 7W

ViviAnne came home from the Hospital on Sunday. She still has the kidney stones. The first update on how they will be treated was inaccurate. The doctors are monitoring them and will act accordingly when they become more of a problem. She also has her weekly Chemo treatment tomorrow.

The big challenge this week will be what to do with two little ones with no electricity. Thankfully, at least Nana's house has power.

Still in 7West

ViviAnne is still in the hospital. She had a CT scan yesterday which helped the doctors determine that she has kidney stones. One of the stones is in a position to pass on its own soon, the other will be removed. Brent and Kristen are waiting on the final word from the Urologist in regard to how that procedure works. She will most likely be in the hospital at least another day or so, depending how everything goes. 

She is doing very well though. She is laughing and playing and talking on the phone. Trips to the hospital like this are just going to be a part of life for the next 2.5 years. 

Will post again when she is released.

Back to 7West

ViviAnne is back in the hospital. She was having abdominal pain, blood in her urine and not acting right. Kristen took her to the clinic and she began vomiting. They admitted her back on 7west, hooked her up to IVs, took some blood and will try to find out the cause. We knew this would eventually happen, still its so sad to see her feel so bad. Hopefully she will only be there for a few days.

Serendipity

Written by Daddy

 On Thursday night, August 4, 2008  Kristen and I went to a pediatric cancer support group at Gilda's Club (www.gildasclublouisville.org).  The namesake Gilda Radner, one of the original "Saturday Night Live" cast members, once said "Having cancer gave me membership in an elite club I would rather not belong to." This place embodied that precisely with sticks and bricks and a very warm, welcoming environment.  Gilda's Clubhouse is beautiful place located on Baxter Ave. across from Phoenix Hill.  Their sole purpose is to support people fighting cancer.  Whatever shape "support" may take the organization aims to provide that service.

Kristen and I chose to go that night desperately seeking something; something from professionals or something from other parents who really understand.

I don't know what we were looking for.

Was it someone to say "You are doing all the right things?" 

Was it for someone to tell us "You are doing this all wrong and should be doing this? 

Was it for someone to thrust out of my analytical obstinate mind the constant recalculating contemplation that a 85-90% survival rate means that 1 in 10 children die?

Or maybe it was just for someone to say "I know, I've been there!"

We happen to be there on a night that was intended to re-organize or re-define what "support" meant for this particular group.  The intent of the meeting was to have a sounding board of parents and patients and all the associated organizations to determine what else could be done or how better Gilda's Club could meet the needs of it members.  Unfortunately, as it originally seemed, no other parents or patients showed up for one reason or another.  Things happen for a reason, right!?!  This turned out to be exactly what we needed.  Kristen and I had the undivided attention of representatives of Gilda's Club, Kosair Children's Hospital, The Lymphoma & Leukemia Society of Kentucky, Hosparus, and the Children's Hospital Chaplin. The director asked us to introduce ourselves and our story. I still don't know how long the meeting was supposed to last, but over two hours later Kristen and I left Gilda's Club.  The director indicated that just listening to just us gave the organizations a clear direction and the focus they needed.  We could sense the consensus from across the dinning room table that each of these wonderful people representing each of these amazing organizations once again realized they are not just sustaining a worthy cause.  They are supporting a Mommy and a Daddy and a beautiful baby girl in the fight of their lives.

We would rather not belong, but are excited to become members of this elite club.  Kristen and I stepped out of the clubhouse doors into the misting late summer rain and a place we haven't been in a long time:  On the same page and happy!

Toe Update

Written by Mommy

Her toe is fine! She woke up from her nap and exclaimed "My boo boo is all better." and was walking and tip toeing around for the remainder of the day. Now she still would shriek, "Oh no my toe!" if Cooper would walk near her and she didn't want him to but whatever.

Last night ViviAnne and I were having "girl time" before bed and she was brushing my hair. And she began telling me that her hair falls out. So I told her it was going to have to fall out so she could feel better. And she said "Yeah, it's cause of my port." I teared up to think that she is so wise beyond her years. She didn't seem upset about her hair just matter of fact and she is so excellent with her port, she can't stand when the nurses call it "Charlie". It's like the port has replaced her bump, it is her little friend she carries with her.

We have noticed she has bad dreams. She used to have night terrors in the hospital and once we got out but now she is having more of dreams than terrors. And now they are about snakes and last night I could tell by what she was saying in her sleep that it was about not wanting to poop on the potty. I suppose every child has bad dreams, I  am just relieved it isn't about the hospital any more. (Oh I don't know where the snake idea came from. Other than when I am stressed or scared I dream about snakes too. I HATE those things.) But all in all she is doing well and is a typical little 3 year old. 

On a side note, Cooper. Cooper and his ability to read ViviAnne is uncanny. Yesterday when she was only interested in sitting with her foot up on a pillow he crawled up into her bed right next to her and we read books for 30 minutes straight. Now for those of you who don't know Cooper the only time he sits still for longer than 10 minutes is when he is asleep or eating. SO this amazed me. And he sat with her again to read books before nap time for another 30 minutes.  Also, I've noticed that sometimes when it comes to toys he will stand his ground and fight for them unless she really is not feeling well or having an off day and then he backs down, like he instinctively knows now is not the time to mess with her. His care and love for her is far older than his mere 19 months. He is just too sweet and funny.

Never a Dull Moment

Written by Mommy

I took ViviAnne to physical therapy today. Her therapist was really pleased with all the progress she has made in just the past week. Even though ViviAnne wasn't really in the mood, since she woke up at 6:00AM this morning, the therapist at Kosair's (who is AMAZING by the way) was able to get in all the therapy she needed. Just as we were wrapping up, ViviAnne wondered over to a table and began picking up little hand weights. No big deal. They only weighed 1-2 pounds. WELL, they had heavier ones there too that I couldn't see and she knocked a 5 pounder off of the shelve and right onto her pinky toe. OUCH!!! 

So she is sitting on the couch with a boo boo band-aid on her little toe with her foot on a pillow saying she can't walk. Is it broken? I don't know. OR is it something she knows she can get away with? Who knows. But whatever the case, needless to say, the therapist and I both felt like CRAP! I was thinking, to myself, "Really Kristen, REALLY! You bring her to the hospital for therapy and tell her no boo boos and then you let THIS HAPPEN?!? As if cancer isn't bad enough and her not being able to walk from the chemo for about 3-4 weeks and now THIS!"

Never a dull moment with a three year old.....cancer or no cancer.

Update from Kristen & Brent

From Mommy:

ViviAnne is in her next phase of chemo. She is enjoying not being on steroids, as we all are, but now we have the task of administering a chemo pill everyday and receiving spinal taps each with with chemo pushed in through the spine. She is back to her happy, bossy self for the most part and is just taking the side effects of the chemo pill in stride. She has become so brave. She does not cry when they put the needle into her port, or even when they stick her finger each week for labs. This is amazing to everyone including the nurses because even older kids don't do as well as she does. We dote on her being brave and strong and smart each week.

She is also doing physical therapy and calls it "her exercises". We are already begining to see the strength and confidence build back in her legs. She went a full 3 weeks without walking stairs or being able to pick herself up off of the floor or even sit down without assistance and now is doing all of these with little to no help from Mommy. YAY!

Brent and I are still struggling with the emotional side of all of this. We as parents are bearing the brunt of the emotions seeing as how ViviAnne really can't with her young age.

 

From Daddy:

We as a family may not know what normal is for a year or so.  However, we delight in the return of small pieces of it as it comes one little moment at a time.  Maybe somewhat selfishly, we take these small moments and exploit them as a family because we are uncertain of how long they will last and when the next small piece might return.

 

This past week was a new challenge with Gramma & PawPaw in Gulf Shores, Nana on the injured reserve from her surgery, and Stacey under the weather.  We got through it okay.  Kristen and I had two small wonderful moments to catch our breath and reflect this weekend.  We feel humbled by the relentless outpouring of generosity and at the same time guilty that we can not reciprocate our gratitude.

 

To our friends in general: Hang in there with us!  We feel that we should apologize for not being able to get away or make commitments to get together.  Know that every thing that you all are doing is making tons of difference in our lives.  The fact of the matter is that we are literally surviving day to day.  It goes without saying that our priorities are staying healthy and getting cured, regardless of how it impacts our social life.  But that does not change the fact that we are missing you all immensely. This was not mentioned in any pamphlet or medical publication but has turned out to be one of the most difficult parts of our struggle.  So even though we are not sitting next to you watching the Cats beat the hell out of the Cards, we wish we were. We love you all and know that you will be there eagerly waiting for us the day that normalcy returns.