Thursday, March 31, 2011

Awesome News

I knew the results from the biopsy would take a couple of days, but the suspense has been killing...so I finally called the clinic and paged the doctor.  She returned my call with awesome news...there were no blasts or leukemic cells in Averi's bone marrow!!!

That means the treatment is working and we will be done in just 2 more cycles.  I was pretty sure that's what she'd say, but it felt SO good to hear it!  The cancer is leaving her body, hopefully to never return again.  It couldn't have been better news.

On another happy note, Averi is continuing to make improvements on her oral feeds.  I gave her a fruit twist today and she not only ate the whole thing, but she chewed it and didn't gag on it once.  That's a big deal.  She even ate it pretty quickly.  Maybe she can move on to steak next, as long as it's not cooked in soy sauce. :)

I also tried another experiment with Averi's Elecare today.  The psychologist at the hospital who specializes in behavioral issues, such as feeding, said she has had some success with adding Tang to the Elecare.  So I bought some Tang.

I mixed up the Elecare and thickener and Tang (sounds yummy huh? it looks even worse) and poured it into a bowl.  My hopes were that she would receive it better on a spoon than with a straw.  I had no idea just how well it would go.

She ate the initial 2 oz I gave her and still acted hungry when I told her she was all done, so I gave her the remanding 2 oz.  She ate it all without one complaint, not one.  I am so excited.  Not only are we getting closer and closer to getting fluids in her orally, but now we have the possible options of Tang Elecare or Splash.  One day...

Wednesday, March 30, 2011

Even Lower

We went in for blood work with our fingers crossed this morning...her ANC is down even lower to 450.

We don't go back to the clinic until Monday.  I have no idea why her counts are going down when they should be going up (especially since they were up so high when she was sick last week) but the doctors assure me that it is nothing to worry about and that Averi's counts just jump around a lot.  It's the not knowing that drives me crazy!
At least Averi's not letting the news get her down.  (She sat in that chair for a good 25 minutes before taking a nose dive to the floor.)

Monday, March 28, 2011

Go Home

We arrived at the hospital bright and early today for Averi's biopsy.  Everything went well and we were even able to get an oncology nurse to go with her into the OR which calms my nerves a lot.  Her recovery was really fast and she was sitting up and playing by the time she finally got to her room on the floor.

After getting her settled, I made my laborious trip out to the car and back with our monthly supplies.  I was proud of myself for getting unpacked so early in the day and was literally hanging the last note on the wall when her doctor walked in.

Guess what?  Her ANC was only 650.  We can't start the next cycle unless her counts are over 1000, even if they were previously that high since the last treatment.  Seriously.

I started putting the puzzle pieces together in my mind.  No one ever called us with the results of her blood work on Thursday.  Apparently her counts were only 740 (you know, the day I took her to Walmart!).  If they had known that her counts were below 1000 then, they would have tested her blood much sooner today to make sure that she was ok to start.  But everyone just assumed that she was fine and they didn't check her blood until after I had unpacked.

So we had the world's fastest admit ever.  I packed everything back up and loaded it back into the car and took Averi home.  The worst part is that my mom was more than halfway here to help out while Averi was in the hospital and it was all in vain.  In hopes of making her stay more worthwhile, I asked if we could do Averi's blood work on Wednesday instead of Friday so that maybe she can be admitted later in the week.  Until then, it looks like we are spending more time at home, which means more time added onto the end of this craziness.
(Averi is getting much better about wearing masks.  She wore this one all the way through the hospital and out to the car.)

Sunday, March 27, 2011

Nervous

Tomorrow is a big day and I have to admit I'm a bit nervous.  The first 4 cycles of Averi's treatment are more intense than the last 2 and should stop her bone marrow from producing any more blasts/leukemic cells.  This means that the bone marrow biopsy she has done tomorrow will let us know if the treatments worked or not.

If there is still a high level of blasts in her marrow, then the treatment plan will be changed and she will be removed from the study she is currently on.  The biopsy she had at the end of cycle one showed improvement so I'm hopeful that everything will be fine, but still...

When I said something to Dan about it tonight he said he hadn't even thought about how serious this next biopsy was going to be (and thanked me for bringing it to his attention so that both of us could worry about it :) ).  I have been thinking about it all week and I am a hot mess.  It's going to be along night, that's for sure.

I don't usually put many religious things on this blog because they are very personal, but they are a large part of our lives and definitely of this journey, and I want to share an experience from tonight.  After talking to Dan about my worries, he decided to give Averi a priesthood blessing.

In the blessing, we were told that Averi will be healed from the cancer and that the treatment plan will work.  She is a special daughter of God who was sent here to our family to fulfill a mission and that mission has yet to be completed.  She will get to live a long, happy life!

I'm not so nervous anymore.  There is a light at the end of the tunnel!  Thank you all for the prayers that have been sent our way - they are working.

Friday, March 25, 2011

Whisper

Averi has a secret to tell you...
video
She can whisper!

Thursday, March 24, 2011

Walmart?

Many months ago cardiology made an appointment for Averi to come in today for an echo and exam.  I don't know how they got lucky enough for it to fall on a week when we are home and actually able to go.  I talked them out of doing the sedated echo since she just had one in December after her nice visit to the PICU but they still wanted to see her and check up on her.

Everything went great and her doctor said her heart sounds like a normal heart with no murmur at all.  I was expecting that, but it still felt good to hear.

While we were at the hospital, we stopped by the lab for blood draws...and by blood draws I mean a finger stick.  Once again Averi amazed me with her ability to just be annoyed that someone was holding her hand down and not even cry that she had been poked by a needle and milked for 2 vials of blood.

I'm not going to lie, I took Averi with me to Walmart today on the way to the hospital (for the first time since she started chemo).  I know what you're thinking, I'm a horrible mother, but I had good reasoning behind it.  Her ANC was almost 3000 on Sunday so it has to be even higher today, I just needed a few essentials and we were only there for 30 minutes max, and she slept for at least half of the time with a blanket over her face.

No one called us today with her blood results since we didn't have them done until 4:00 but I'm really hoping they are high or I'm going to feel horrible about taking her into that germ fest.

Wednesday, March 23, 2011

Mobile!

During the short one day visit home, I didn't get to post about Averi's amazing new trick.  She is finally mobile...even if it doesn't require her to be on her stomach. :)
video
When we got home on Wednesday I put Averi down on the kitchen floor with some toys while I unpacked and got dinner together.  At one point I walked in the room and she was sitting in front of the refrigerator.  I asked Dan if he had moved her and he said no.  So we sat and watched her and discovered that she was scooting around on her butt!

I think she had been trying to do it at the hospital and we didn't realize because she is always sitting on a blanket on the play-mat.  Now that we are home and she has more interesting things around her and a slippery floor to scoot on, she is on the move!

It's been really weird getting used to the fact that I can't just sit her in the hallway at the top of the stairs and expect her to be safe while I do things.  I also had to relearn that mobile babies make more messes.  I sat her on the floor in the bathroom while I took a shower today and she tore it apart.  The bath rugs were piled in the corner and she was sitting right in front of the door when I was done so I couldn't open it without hitting her.  At least I remembered to put the trash can on the counter!

Sunday, March 20, 2011

Thermometer for Dinosaurs

After spending 2 nights on the floor, we got to go home again today.  The doctors nicely got our hopes up that we could go home last night but decided against it since her ANC dropped from 1900 Friday down to the 740's yesterday morning.  I'm assuming the sudden increase was due to her body trying to fight off whatever is making her sick.  Either way, Averi came home today with an ANC in the 2700's.  I guess that was good enough for them. ;)
Averi was feeling better yesterday so she and I did some light reading together.  Of course it didn't last and she threw up again last night (she was probably just showing those medical people who's boss).

Oddly enough, her temperature keeps registering differently under her arm and in her mouth so they have been requiring oral temps again.  It has been a nightmare trying to take her oral temp with the ancient thermometer they have.  It requires a lot of screaming and mouth holding for several minutes.  I will be going to the store asap to buy a fast thermometer to bring with us the next time we come.

Now that she's feeling better from whatever she had and her counts are up, I'm looking forward to a productive week at home and a nice relaxing weekend before starting cycle 5 next Monday.

Friday, March 18, 2011

No Rest for the Weary

At 1:30 this morning I sat straight up in bed, threw the covers off, and ran to Averi's room.  Somehow I knew something was wrong and I needed to get to her as quickly as possible.  When I got to her crib she was laying face down in a puddle of throw up.  I quickly picked her up and cleaned her off with the help of a very startled Dan.

My only explanation is that our Heavenly Father was watching over her.  I am a sound sleeper to begin with and I had only been asleep for an hour so I was out cold.  Averi didn't make any loud sounds or cry out so there was nothing to alarm us that something was wrong.  Thankfully, she was sleeping on her stomach so she didn't aspirate.  It sends chills down my back to imagine what would have happened if I hadn't been prompted to go to her.

Averi doesn't just throw up for no reason, so after changing her clothes and the bedding we took her temperature.  It was normal.  We hoped that it was just a freak occurrence and started putting her back in bed when she puked again.  I glanced at Dan and we exchanged the 'do we call the doctor or not?' look.  He said that if she threw up a third time then we would be more proactive.

We set up the pack 'n play in our room, since I wasn't about to leave her in a room by herself, and turned off the lights.  Guess what?  She threw up again.  We took her temperature again and it had gone up more than 2 degrees.  Since she's had problems with axillary temps lately we took an oral one and that one was even higher.

This is when the internal debate happens.  If we call the attending on call they are going to tell us to go to the Emergency Department.  If we go to the ED they are going to take blood cultures and admit Averi for at least 2 days until the results come back.  So picking up the phone is making a big commitment, especially at 2:30 in the morning.  We finally called after the fourth puke.

Needless to say, the rest of the night played out exactly how we thought it would.  The frustrating thing was sitting in a tiny room in the ED, watching them use dirty cuffs and monitors on my immunodeficient daughter, when they know she's going to be admitted and we could be up on the oncology floor where people know how to take proper care of her.

We finally got a room on the floor around 6:30 this morning.  The puking has stopped and her blood pressure is pretty normal, but her temperature is still up and they want to keep an eye on her for a couple of days.  They swabbed her nose (that thing goes up way further than I anticipated) and sent her blood for cultures.

We were only home for 1 day, ONE DAY, before having to return.  There goes my crazy idea that we would have a nice relaxing weekend at home as a family. =P

Wednesday, March 16, 2011

Done with Cycle 4

I suppose when I start getting emails and phone calls wondering if Averi is ok it might be a sign that I need to get caught up on her blog. :)  It seems like when I get a little behind I get overwhelmed and then I get really behind.  But I am ready to redeem myself and catch you up on the craziness of the last month.  Be careful what you wish for because here it comes!

When your ANC reaches bottom, there is nowhere for it to go but up, and luckily that's what Averi's counts did after just one day at zero.  Just like last time, once her counts started going up, they went up quickly.

Her ANC was 44 Monday and doubled to 90 yesterday.  The doctor came in during rounds yesterday to inform us that if her counts were in the triple digits today we could go home.  Since that only required an increase of 10, we figured we were good to go.

Then her primary fellow visited us last night and announced that she didn't feel comfortable sending Averi home until her counts were over 200.  While I understand her concern for Averi's tendency to jump around, I was bummed.  There was no way she was going to jump that much in one day.
"Get me out of this prison!"
(Averi's latest activity of choice is pulling herself over to the edge of the crib and dangling her legs while chewing on the railing.  She looks pretty pathetic if you ask me.)

Then a miracle happened!  Her ANC went up to 192.  I held my breath while the doctors debated and they decided that being 8 away from 200 was close enough.  We got to go home!  Yipee!
We are officially done with the 'hard' rounds of chemo.  When we first started her treatment plan, the doctor told me that recovery for the last two cycles wouldn't take as long and we would get more time to be at home in between.  I'm too afraid to ask if that is still the case now that they know how Averi works.  I guess we will wait and see.

Sunday, March 13, 2011

Surprise

Averi would like to share her surprised face with you:
video
I love that she looks surprised and then immediately smiles and giggles at herself because she knows she's super adorable.  I also love that her tiny little button nose flattens to almost nonexistent when she stretches her face out.  I can't take much credit for teaching it to her.  She started making the face last week and I had to put a name to it so I could get her to repeat it.


Sometimes being right isn't 'all that and a bag of chips.'  I was definitely right that Averi's counts weren't done dropping...I just didn't know how right I was.  Her ANC dropped to 10 yesterday and then down to zero today.  Zero!

I thought that she had plateaued in the 30's and she'd start heading back up so we could go home tomorrow or Tuesday.  Now...not so much!  She had to go and plummet some more, the most she possibly could in fact.  Next time I'll try to be more humble. :)

Friday, March 11, 2011

I Need a Hole to Crawl In

We must be approaching the 3 week mark because today was a terrible, horrible, no good, very bad day.

Kaili spent the afternoon with Averi and I and my patience was running on empty.  There wasn't even one specific thing that happened, just lots of little things that kept adding up.  That's when I reached my breaking point.

The only problem was that I couldn't allow myself to vent privately so that I could move on.  There is no privacy when you live in a hospital room.  I'm not a person who cries very often, (probably not enough, considering) but I just wanted to lock myself in my room, crawl under the covers, and have a good cry.  The pressure was overwhelming and I just wanted to run away for a few minutes to vent and recompose, but I couldn't.

I couldn't just leave my two kids in a public area unattended while I went searching for some refuge.  It was time to feed Averi and Kaili wanted something to do and the nurse was in and out the room doing vitals and wanting to talk.  I couldn't even make conversation and I barely got a smile out.

I hated the nurse at that moment.  I wanted to tell her to get out, lock the door behind her, turn off the camera in our room, and crawl into a hole where no one could find me with their list of my constant responsibilities.  But it didn't happen.
(At least Averi can sleep her way out of this craziness...yes that is a highchair.  If only I could do that.)

Finally, in desperation, I texted Dan and pleaded with him to come over as soon as possible.  Thankfully, he left work right away and came to relieve me.  Kaili and I left right after dinner and we both went straight to bed.  Hopefully I'll only have two more terrible, horrible, no good, very bad days before this circus is over.

Wednesday, March 9, 2011

In Your Face

While taking a walk around the halls with Averi yesterday the resident found me and informed me that we could go home.  I literally laughed out loud because I thought she was joking, but quickly turned it into a cough when I realized she was serious.

When I asked her why she said that Averi's counts are trending upward and they were over 200.  While that was true, her counts had gone from 185 to the 190's to just barely over 200 - more of a plateau than an increase.

I'm not gunna lie, it made me really uncomfortable to think about taking her home.  I spoke to the nurse about it since the doctor was nowhere to be found and she said that they wouldn't kick us out.  I explained that we just love being at the hospital so much that we can't bear to leave.

When I finally did get to talk to the doctor I told him that last cycle Averi's counts had to be over 200 for two days before she could go home and that I would feel much more comfortable if we could stay just one more night so we could check her counts in the morning.  After all it is Averi and last time her counts kind of dropped, plateaued, and then plummeted some more before making their final assent.  He said that was fine.

When I asked Dan if he would have done the same, he said he would have been excited and packed up and gone home - but only because he doesn't think so hard about things like I do.  After my explanations, he was on board.
(Averi's latest thing while trying to go to sleep is grabbing her foot, stretching it straight up, and using her toes to fiddle with her baby's bangs.  I tried to get a picture but she kept moving her foot so she could see the camera.)

This morning I had to wait until almost noon to get the results back on her ANC (normally they have them before I even wake up).  The suspense was killing me - were we going home or not?  The doctor finally walked into the room and said, "Mothers always know best."  Apparently her ANC dropped to 35!

I don't mean to brag, but I think I was right.  Not only was I right, but I was smarter than the doctor.  My head might be slightly more inflated than usual today.  I tried to be a gracious winner and even held my breath so I could fight the urge to yell, "In you face doctor-man!"

Tuesday, March 8, 2011

A Formula Solution?

I have been putting off doing this post because I wanted to wait until I had the solution and I could boast a little.  Apparently it's not going to be as easy and quick as I had hoped and you are going to have to take the journey with me instead of just seeing the results.  (Isn't that how everything works with this cute little lady?)

I might have mentioned it before, but in case you missed it - Averi's G-Tube is the bane of my existence!  I HATE it!  I continually have the wheels turning in the back of my head trying to figure out how we can get rid of it.

Averi is spoon feeding like a pro now so the only thing we use her tube for is liquid intake.  Here's what I've figured out through lots of experimentation:
  • EleCare tastes like crap!  I once had a nurse ask me to smell her formula because she thought it was spoiled - it was just fine.
  • Because of Averi's crazy list of allergies, she has to drink a hypoallergenic formula for nutrition.
  • The only reason babies drink any kind of formula is because they have never tasted anything else and don't know any better.  Averi knows better.  She has tasted many different foods - all of which taste better than poop, which tastes better than EleCare.
  • Averi is perfectly capable of self feeding through a straw.  If I fill her honey bear with baby sweet potatoes I can literally walk away and she will hold it, drink it with several consecutive swallows at a time, and be sad when it is gone.  This proves that it is what's inside the bear that is the problem and not the straw.  Case in point:

Since Averi's appetite came back after cycle 3, I decided to start experimenting with flavors and textures to see if I could trick her into drinking EleCare.  Things that didn't work: mixing a little formula with baby food, adding extracts like mint, vanilla, lemon, and almond, adding apple juice, thickening with homemade thickener that is less creamy, adding instant potatoes to flavor and thicken, thickening apple juice with all options listed...the list goes on and on.

Finally, in desperation, I went to the nutritionist for help.  Yes, you read that correctly, I sought out the nutritionist for advice.  She said she understood what I was trying to do and that she would do some research to see if she could find a solution.  I wished her a sarcastic 'good luck.'

Then, a miracle happened!  She returned with samples of a hypoallergenic drink called EO28 Splash that comes in juice boxes and fun flavors like tropical fruit, grape, and orange-pineapple!  (Why I haven't heard of it before is beyond me.)  Of course they don't carry it at the hospital and we would have to order it through our home health care company and pay all the costs even while we are at the hospital, but I was willing to try ANYTHING!
So we watered it down, thickened it, mixed it with baby food, put it in the honey bear, and spoon fed it to Averi.  The outcome wasn't always good, especially with the grape, but after several meals of getting her used to the same flavor, I was able to convince Averi to drink 2 oz of thickened tropical fruit formula mixed with a 3.5 oz container of bananas from the honey bear!  She didn't hold it on her own and she pushed it away several times but she eventually drank the entire 5.5 oz!

I hope you're noticing my exclamation point usage!  This is such a big deal!!!  We still have a long way to go before she's drinking 4-5 oz of straight formula at each meal, but I think we might have found the beginning of the solution.  'Good-bye Mickey' here we come!!!

Monday, March 7, 2011

Mickey Madness

There's nothing better than being woken up at 2:30 in the morning on my first night back at the hospital after a weekend at home...especially when I'm being told that it's because Averi's Mickey has come out, again!

I have no idea how it happened this time.  She was sound asleep and the Mickey was laying next to her with a deflated balloon.  I filled up the balloon and squeezed it, trying to find a hole/leak, but I couldn't find anything.  It was really weird.  So I stuck it back in, re-inflated it, changed the bed, and went back to sleep. :)
(Kaili decided she wanted to decorate Averi's hat.  Pretty stylish if I might say so.)

Averi's ANC is down to the upper 100's now, so maybe it will start making it's way back up soon.

Friday, March 4, 2011

Roll Through

Something spectacular happened today...Averi got out of sit onto her stomach all by herself!!!  (You can't really tell in the video, but she starts out in sit.  The scowl on her face is lovely, but at least I have proof that it happened.)
video
Not only did she do it all by herself, but she did it two times in a row (proving that it wasn't a fluke) and she did it the correct way.  So many kiddos with DS take advantage of their low muscle tone and simply roll right through the middle while both legs stay out to the sides.  Averi tucked one leg in front of her and rotated the other one on the side, just liked PT has been showing her for months now.

I am SO proud of her!  This is such a big stepping stone in the process of learning to crawl.  Hopefully she will keep doing it now that she has figured it out.

Sometimes it's heartbreaking that she takes so long to learn things but sometimes it's fun to be able to celebrate each little step.  With Kaili we were excited when she rolled over, crawled, and walked, whereas with Averi we get to watch each step of the process and have way more celebrations.
(Averi lounging on my lap.  She put herself there and was perfectly content to stay.)

As far as Averi's counts go, they have been doing a classic Averi, meaning they are doing whatever they want to do.  This week her ANC went from 888, to 564, to 652, back up to 884, and then down to 504 today.  During rounds today the doctor (not the idiot med student, but the doctor) announced that since her counts had gone down again he didn't feel comfortable sending her home today.

I literally bit my tongue not to laugh out loud.  Earlier in the week he said that sometimes the counts don't go down very much after several treatments and that she might get to go home sooner.  I "jokingly" told him that that was a terrible thing to say to me and that he should know better than to get my hopes up when we haven't been here very long and my mind was geared up for 4 weeks.

When he said Averi wasn't going home today I told him we would be here at least another week and he about choked on his spit.  I don't think he believed me. :)  After he left, the nurse told me that he was confused and that if Averi's counts didn't go down there would be concern that the treatment didn't work, not just a smile and sending us home.  It's a good thing I am finally learning to be smarter than the doctors. =P

Finally, Averi's nausea has subsided and we have slowly been increasing her feed amounts and rates until she was back on a normal feeding regimen today.  She handled it just fine so they will be taking away the phenergan tomorrow.  I'm glad that we finally won the battle with puking and that she is feeling better.  Now is the waiting...

Tuesday, March 1, 2011

Not an Outlier

I love and dislike going to our DS Support Group every month.  Before you get me wrong, I really love going.  I love the people there and the wonderful friendships we have made.  I love getting to see the other kiddos play with each other and noticing how much they've changed in the last month.  Last night I went (Dan stayed with Averi so that I could go) even though the speaker was from a different county then we are, just because I wanted to be there with everybody.

I dislike going because it seems to be the only place that gets me chocked me up when I talk about Averi.  At the beginning of each meeting we go around the room and say what our child is up to.  I always divert to Dan so that I don't have to try to get through it, but Dan wasn't there tonight.  It's not that I started bawling or anything, but I had to work really hard not to.  These are the people that I feel best understand what we are going through so my emotions just run high.

At the same time, it's always bitter sweet to see how well all the other kiddos are doing.  I am truly excited for them and proud of the progress they are making.  Seeing them, however, reminds me just how far behind Averi really is.  I often feel like she is the outlier.  Living in our little hole at the hospital seems to make me forget that there is a real world out there where kids actually progress and develop at a 'normal' pace.

It's even harder when typical kids, who are quite a bit younger than Averi, do things that she either can't do or has just learned to do.  Again, I'm honestly excited for them but a small part of me feels like they are rubbing it in my face.

Recently a friend announced that their 1 year old could do something that Averi has spent months mastering.  My initial response (in my mind of course) was, "Why can't you just let me enjoy her accomplishment without outdoing it?"  It's hard accepting that your child will always be delayed, but it's even harder to witness it.  I just want the very best for my kids.

I am so grateful for our support group and the knowledge that I'm not the only person who experiences these emotions.  I am also grateful for the opportunity to see them each month.  I seriously love going, even if it is a bit of an emotional ride.  They celebrate all the small things that Averi is doing and help me enjoy the progress she is making, no matter how slow it is.