Clean Vents

This is going to sound like a really silly thing to post about, but I cleaned all the air vents in our house today.  I have been wanting to do it for a really long time and finally found the motivation in my daughter with no immune system. :)

My vacuum died right before Averi was admitted to the hospital back in October, which is when I first decided that cleaning the vents had been bumped up on the priority list because of Averi's health.  Long story short, my parents gave me a vacuum for Christmas that has a long hose on it that can fit down my vents.  I found all kinds of stuff down there, (monkeys, cars, food, dog toys, money, and my favorite - a sharp piece of metal) all of which was from the previous owners.

Being the OC person that I am, it didn't stop there.  I then made a bucket of bleach water and sanitized all the vents.  I am proud to say that we are starting the new year with the cleanest air this house has ever seen.

It's amazing how much more aware of germs I am now.  All of Averi's toys get cleaned with alcohol, there are bottles of sanitizer everywhere in our house, and we go through paper towels like you wouldn't believe because they are only used one time and then thrown away.  Sometimes I wonder what I'll be like when we have another baby

Still Masked

After being home for 2 days, we headed back to our second home to have some blood work done today.  They told us to plan on being there for a while because more than likely Averi was going to need a red blood transfusion.  When we left on Monday her hemoglobin had been hovering right above the transfusion level for a couple of days.  Red blood cells take at least 2 hours to transfuse, after waiting for them to be transferred to the clinic, so I was planning on being there all day.

So we packed up the diapers and toys and feeds and blankets and magazines...and headed over to the clinic.  This is a little nerve racking because we have to walk down the halls past tons of possibly sick people not wearing masks.  I always leave her in her car seat (thank goodness she is still small enough for an infant seat) and put her in the stroller with a blanket over her head, both sun visors up, and maybe a blanket over those as well.  You can never be too cautious, right?

Whenever we go we wait, then they take vitals, then we wait, then we go back for the blood draw, and then we wait for the results.  Today was nice because Averi had to get a dressing change (the dressing over her broviac site) and a cap change (the caps on the ends of her broviac line) and they were able to do it while we were waiting for the blood work to come back (both have to be changed once a week when we are at home).  What blew my mind was that the nurses didn't even wear masks while working with Averi.  Hello, she has almost no immune system and I'm not wearing this mask for fun!

(I ran an errand yesterday and came home to find Averi snuggling with Grandpa.  Yes, the look of confusion on Averi's face is because he is wearing a little kid mask.)

When the preliminary results came back, Averi's hemoglobin had actually gone up a little on it's own - no transfusion!  She also had an ANC of 178, a great improvement from 88 two days ago, but still way below the "go home" of 500.  So we are all stuck in masks for a little bit longer but at least we got to spend the rest of the day at home. :)  The doctor doesn't want us to come back until Tuesday, so we get a long weekend break!

Are You Serious?

When the nurse told me that Averi's counts were up to 88 today, I was excited for the upward trend, but when she came in this afternoon and announced that we were going home I was in shock!  It was totally unexpected and I asked her if she had walked into the wrong room or if she was playing a joke.  She assured me that she was serious and I asked to talk to the doctor.

It's not that I don't want Averi to go home, of course I do, but I just wanted to make sure that the doctor knew what she was getting in to.  I have a house full of family and her counts are no where near 500.  He explained that her numbers were trending up so he wasn't worried about them going back down again and that everyone at home would have to wear a mask when they were around Averi.  Um...ok?

Once again I am faced with the moment I have been waiting for for weeks and my excitement feels forced.  As much as I 'love' being at the hospital, going home makes me nervous and doesn't really provide much more freedom.

(While I packed I put Averi in the jumper for the first time - do you love the backdrop?  She liked it, although I don't know how much actual jumping she did.)

So, 3 weeks and 6 days after starting cycle 2, we packed up our Christmasy hospital room and headed home decked out in masks.  It's funny, if Averi would keep a mask on, none of the rest of us would have to, and since the main hallway of the hospital is infested with germs I have to carry Averi to the car with a blanket over her head like I'm trying to smuggle her out of there.  Hopefully it was a safe smuggling and we will have an uneventful time away from the hospital.

Hospital Christmas

Contrary to our hopes that Averi would have a Christmas miracle and wake up with an ANC of 500 (the magical number needed to go home), she went back down to 0 yesterday.

Thankfully, we made plans to all stay at the hospital Christmas Eve, against their rules ;), and it didn't matter where we were.  Kaili slept in the bathtub and Dan and I managed to get a full size air mattress into the room.  We spent Christmas day opening presents, hanging out in our pjs, and making memories.  It was a blast!

Her counts went back up a little today and we are crossing our fingers that they will continue to go up so she can come home for a little while while my family is here visiting.  Other than waiting, which seems to be our favorite game in life, we are doing great!

Stylin'

One of my friends made the most creative gift for Averi that I have ever seen (and definitely never thought of)...a stylin' hospital gown!  I LOVE it, and so does Averi!

You can't see all the cute details because Averi wouldn't sit still, but there is a detachable flower behind her right hand and a slot with a bow on the bottom left for her G-tube port.  The back has double ties so that her skin is covered up and not hanging out in the breeze and the shoulders have buttons and velcro.  It is for sure the cutest hospital gown ever!

By way of the "are we getting out of here for Christmas" news...no we are not.  Yesterday was the first day that Averi's ANC wasn't 0, it was a whopping 6.  It may not be much, but it promises a soon increase, which is more than we've seen in the last several weeks.

Today her counts went up to 54.  The doctors came by and said that she may be able to go home for a few hours tomorrow but that was it.  Dan informed them that if she couldn't go home tonight, so that she could be there for Christmas morning and then return to the hospital later, then it wasn't worth it (they don't know about our plan to have the whole family stay the night in Averi's room).  Besides, if her counts don't go up at all tomorrow, it won't matter anyways.

While it's not the ideal way to spend our Christmas, we will definitely make the most of it.  I'm sure it will be a Christmas to remember. :)

Therapies

I realized that amidst all the chemo and getting sick (and not being in the mood to blog or do much of anything other than wish for sleep) that I haven't updated you lately on Averi's therapy sessions.  She is doing really well.  I sometimes wonder how much therapy really helps, since there is no way to know what would happen without it, but at least it gets her out of her bed and gives her some new faces to look/cry at.

Physical Therapy is always a process and not always super fun, but it is the most needed.  Averi recently learned how to turn herself in a circle on her butt, using her feet as leverage.  This is wonderful because it is getting her to move more and it is teaching her that she can use her body to get to what she wants.

She has also started leaning forward and putting weight on her arms while she is sitting.  This includes putting weight on one arm while reaching the other arm to get a toy.  I know it sounds silly, especially for a 19 month old, but it is such a big deal!  She hates using her arms or having to bear weight on any part of her body.  Unfortunately, she won't lean on her arm to side sit, which would help her transition into laying down, but instead combines her new tricks and turns until she's facing what she wants and then reaches for it.

Last week they decided to get leg braces to help her with standing up.  They cover her entire legs and keep her from bending her knees when being supported in a standing position.  This allows us to push her hips forward into the correct position without having to grow extra arms to keep her legs straight as well.  She hasn't decided that she doesn't like them yet and even stood at a chair for 10 minutes while the therapist supported her.  She still refuses to put her feet down on her own so I'm hoping this will help teach her to put some weight on her feet and legs.

(She was yelling at me in both pictures, thus the open mouth and angry eyes.)

Tummy time is still nonexistent and the PT brings something different to try with her every time she comes.  She will occasionally tolerate it for a little while but only when it is forced on her.  If she has to roll onto her tummy to get a toy, then it is too far away and not worth getting (yet she sleeps on her tummy).  I keep reminding myself that if she were mobile right now things would be much more difficult but it's still hard to swallow the fact that she's no where near crawling.

Occupational Therapy is much more fun.  Averi loves to draw scribbles with crayons on paper or play with her magnadoodle.  She is awesome at putting cookies in a slot, taking rings on and off a pole, and nesting cups inside each other.  She's really close to stacking blocks and not so close to putting large puzzle pieces back in the right spot.

Speech Therapy has really blossomed lately.  We are mostly working on signing right now and Averi is reluctantly responding to it.  I have to admit that her first sign was Dad, right before she was admitted this last time.  Dan's pretty proud of that, even if she only does it when he tells her to and then shows it to her.

Today she was showing off at therapy and signed 'more' several times (when a toy she was playing with was taken away and she was forced to ask to play with it some more) and 'please'.  She even signed 'all done' for the first time when it was time for the therapist to go.  All of her signs still need some interpreting and definitely need some motivation (she only does them when being shown and asked) and I'm not so sure that she understands what any of them really mean, but it is definitely a stepping stone.

Therapies or not, Averi is making progress, but always at her own pace.  Recently she looks older to me and I finally decided that it's because I can see her neck.  She's losing her baby-ness and becoming a toddler (minus the toddling).  I am so proud of her!

Not Going Anywhere

I came to the realization this weekend that if Averi's blood counts haven't started going up by now, they probably won't be high enough to go home by Christmas.  After getting some rest in my bed at home this weekend, I am accepting of this prognosis.

This morning when the doctors did rounds, the primary doctor asked me what my thoughts were about where Averi would be for Christmas.  When I told him what I had decided he responded that not getting my hopes up was a good thing to do because she most likely wasn't going anywhere.  His overly obvious statements make me giggle, but it might have something to do with my lack of social contact.  Either way, some back up plans are being made for Christmas this year.

(Our little texting cuties.  Who says technology is affecting us at a young age?)

I must announce that last week was, to put it mildly, a hard week, but I am pushing forward and ready for a new week.  It might help a little that Averi is feeling much better, although still not 100%, and slept through the night last night, but that might be a stretch. :)

On a side note, this experience gives us so many awesome opportunities to meet some wonderful people.  Over the last few months we have been given the chance to get to know some of the other patients on the floor.  I promise you, no matter what life gives you, there is always someone who's life is harder then yours...even if your child has cancer.

Maybe I will share some of their stories one day, when it's not so fresh and personal to them.  I am so glad that if we had to go through this trial, we are (hopefully) getting it out of the way while our kids are young and their spirits are hard to break and their memories are few and far between.  One day this will seem like another lifetime and we will have moved onward and upward (well, at least that's what I tell myself anyways).

Not Sepses

After 48 hours (I still say there has to be a faster way of doing it) nothing grew on Averi's cultures.  It was just a cold, or at least something that wasn't in her blood stream!  Although it left her puking and with a high fever, it did not send her to the PICU.  I guess I'll count that as a blessing.

She's still not really in the mood to do anything but her fever is gone and her antibiotics are being readjusted.  She won't eat and definitely won't drink anything, but she's not in the PICU.  Hopefully she will start feeling better soon.

In the midst of all this being sick, Averi received a very sweet present this week.  Each member of Kaili's preschool class made Averi a Christmas Get Well Card with a yarn tree on the front.  The letters were so cute!  We hung them up in Averi's hospital room so that we could all enjoy them.  (Note the Christmas lights that we had to jump through hoops to keep up on the walls.  If we have to be here during Christmas time, we're gunna make it festive, dang it!)

It Gets Old

The last post was really long, my apologies, but that is life right now...long and tiring.  I so need to vent...

When we first heard the diagnosis and treatment plan, I thought I was mentally prepared for 6 months of craziness.  I was NOT.  We are now 3 months into a '6 month plan' and not even done with cycle 2.  This is half of what I thought it would be and I am done.

It gets old asking people for help all the time, even if they say they don't mind.  It gets old having to schedule 4 people's lives so that we can have an hour or two together every night for dinner.  It gets old rushing through dinner and hurrying your 4 year old and not ever getting to spend real time with your husband or family because it's almost bed time and everyone has to get up early tomorrow to start another crazy day.  It gets old not being able to be the mother or wife you want to be because you're just stretched too thin and you hope someone else is making up the difference.  It gets old not being able to exercise and feeling yucky all the time and staring at the same walls and people.

It just gets old and there is no end in sight.  I realized today that we will still be here when Averi turns 2 in May.  When Averi was born, I accepted that we would never have a 'typical' life, but how far from typical are we expected to venture?  How many times am I going to take out my frustrations and lack of sleep on my husband before he gets tired of it because he is so sleep deprived himself?  How long?  I just want it to be done so we can go back to whatever 'typical' is supposed to be for us.  I was so not prepared for this.

Hope It's a Cold

Tuesday was another normal day at the hospital.  Averi is continuing to have sessions with OT, PT, Speech, and Massage. Feeding is going about the same with interest in purees and not so much interest in drinking.  Oh, and did I mention she didn't sleep that night?

I hate that I can tell when Averi is about to get sick and no one can do anything until some 'real' symptoms show up.  She rolled around in bed crying all night and her head felt really hot to me but she had no fever.  PT even mentioned that she felt warm Wednesday morning but she still had no fever.  She wouldn't eat anything and literally fussed all day.  When she couldn't even nap for more than 15 minutes without waking herself up crying, I demanded that something be done.

The nurse finally called the doctor for some Tylenol, but only after I told her that Averi is teething.  I also explained that Averi got all four molars first and never got fussy with any of them, but all she heard was teething and then went and ordered some Orajel.

It literally took an hour and a half to get the Tylenol, and by then Averi had cried herself to sleep while I rocked her.  Luckily (I guess) Averi finally had a fever by then (which the nurse also attributed to teething) and I asked that a doctor come see her.  She makes me way too nervous when she starts getting fevers.

Of course, by the time the resident arrived, she'd had Tylenol on board for 2 hours, had no fever, and was happy as could be (for the first time in almost 24 hours).  They said she looked fine and to call them if we had any concerns...um isn't that what I did 2 hours ago?  They also said she couldn't have any more Tylenol (the only thing making her happy) because they didn't want to mask any symptoms if she got worse.

As only a mother can know, she got worse.  By 10:00 last night she had a fever over 101.  They took cultures and started her on 2 hard core antibiotics.  All I could think was, "Please don't be septic!"  She was hooked up to something all night, as she needed more platelets and antibiotics.  The nurse and I took turns rocking her all night long.  Her fever got as high as 102.6 and her whole body was on fire.  My only hope was that her arms and legs were hot as well (sepses causes the extremities to go cold as the body works to protect the vital organs).

By this morning, I realized for the first time that she could be sick without being septic...duh, I know.  The doctor explained that, as bad as it may sound, the best option would be for her to have a cold.  So that's what I hoped for, all day long, as she lay in her bed refusing to even sit up.

As good things always come in pairs, I also noticed a large bump on Averi's bum as I changed her diaper before she tried to go to sleep last night.  She screamed when I wiped it so I showed the nurse and he said that it was a hemroid.  I asked him what we could do to treat it and he replied that nothing could be done unless it was really large and needed to be surgically removed...and that her's is pretty large for someone her size.  Seriously, that's what you're going to tell a mom who thinks her child might be septic?

This morning the doctor explained that chemo breaks down the body, including the intestinal walls, and can sometimes allow normal GI bacteria to enter the blood stream.  This could be reason for her to become septic and they are going to keep a close watch on her cultures for a GI bacteria that can cause respiratory problems, especially now that she has the hemroid.  They also switched her to an even stronger antibiotic that targets GI bacteria.

The only thing that trully cheered Averi up today was when Music Therapy showed up.  She loves music so much.  She still wouldn't sit up, but she danced while lying down and shook her maracas and tapped the drum while the lady sang and played her guitar.  Averi even smiled for a little while.  It was a miracle.  It was perfect timing (something was set up yesterday because Averi won't leave a mask on and therefore can't leave the floor to go to group music time and other activities) and I can't wait for them to come again.

Tonight there is still nothing growing on her cultures and I am hoping the antibiotics start kicking in soon.  I really hope it's a cold!

Grandma's Blood

Today was another uneventful day, which is good but still draining.  When the NP came by this morning she said that, as expected, Averi's blood counts are starting to drop.  They tried to wait as long as possible before having to give her blood products, since there is always a risk, but they had waited long enough.

Averi's platelets were 16 (20 is means for a transfusion) and her hemoglobin was 7.3, which should have left her tired and pale.  Instead she was chipper as ever; the NP couldn't believe it.  This meant she had to get platelets and red blood today.

Lucky for us, Grandma direct donated some blood while she was here last week.  This was the first time Averi was able to get blood from someone we know, which was pretty cool.  Grandma tried to pass out while she was giving the blood, but she held it together and made the sacrifice for Averi, which is greatly appreciated!  Averi kept playing with the blood tube and trying to eat it...um gross.

After getting her blood transfusions, Averi was much happier and more energetic.  I decided it was time for a project and set to work determined to find a way to keep Averi's name and allergy bands on her legs.  Her feet are so tiny that they fall off all the time!

So I rigged up fleece bands that I could tie around her ankles.  I don't know how long they will last but at least they look more comfortable and they stay on.  (I know what you're thinking, and yes I do need to get out of the hospital more often.)

 Averi seemed pretty pleased with today's accomplishments!

P.S. - If anyone ever wanted to direct donate blood for Averi, not that we are asking but because people have asked us, she is A positive.  Contact me and I will add your name to her list of donors.  Then you just go to a Red Cross (after they get the paper work) and they will send your blood to us. :)

Oral or IV

I know, I know, I shouldn't have left you hanging after that last urpy post.  Don't worry though, Averi has taken posting on the blog into her own hands.  I'm not sure if it will be more than raspberries but at least she will be posting.

After Thursday night we re-decided that nighttime is Averi's yuck time.  Remember how we gave her Zofran every night when we were at home?  Well, we forgot about that when we came back to the hospital, just like we forgot that Thursday was going to be the rough night.  Anyways, we have been giving her Zofran at night again and she has been doing just fine.

Dan stayed with Averi over the weekend and had a little confusion with the nurse about the Zofran.  At home we give her an oral solution but at the hospital they give it to her as an IV.  When the nurse asked how they usually gave it to her, Dan told her that we just push it in (talking about putting it in her G-tube).  The nurse seemed really confused and said that the order said it should be over 15 minutes (if she had the order why was she asking Dan).

After much debate she hooked it up to the broviac as Dan tried to stop her from giving an oral med in her IV.  Long story short, they finally figured out that they were talking about two different ways to give it.  At least Dan was paying attention. :)

Other than that, it was an uneventful weekend, which is just what we like.

I Jinxed It

Yesterday all was well in the world, and then I went and posted about it.  When I said that Averi was feeling great I forgot that last Thursday was the day we went home from the hospital and Averi spent the entire night throwing up.

Well this week's chemo was no exception.  As Dan went to lay Averi in bed before we headed home, she threw up all down his front.  She was fine all day but she really fought eating dinner, more than usual, and seemed a little fussy for the rest of the evening.  Apparently her tummy wasn't feeling too great because she gave dinner back.

The nurse ordered some IV Zofran and we did the usual cleaning up.  Poor Averi was so exhausted that she fell asleep naked with her eyes half open while Dan was holding her.

Things calmed down but then she had another bigger episode.  Once her stomach was empty and the Zofran had kicked in, she slept for the rest of the night.

What is up with this?  I even knocked on wood when I said things were going well.  From now on I will only have bad things to say so that Karma will stop kicking me. =P

Flashes of Hope

We finally got the pictures back from the photo shoot in October...it was worth the wait!

Waiting for the Storm

We were told that this cycle of chemo would probably be the hardest since it is more concentrated and she gets it twice.  Well if this is hard, sign me up for a round.

Averi is doing awesome (knock on wood...no seriously, we can use all the help we can get).  I have to admit that it makes me a little nervous because I remember saying something similar right before she started throwing up for 2 days and then taking a trip to the PICU.  She hasn't even acted sick at all and only complains because she's bored out of her mind (I know the feeling).

She did start showing signs of the chemo today when her blood work showed that her hemoglobin and platelets had dropped.  This is expected and means the chemo is doing it's job, but she needed both platelet and red blood cell transfusions.  Luckily she hasn't started showing negative reactions to getting blood products yet.


I have a confession to make.  Someone we know had to have follow up tests done after getting bad results on a mammogram.  When she emailed everyone to let us know that it wasn't cancer, I didn't have the expected sigh of relief.  I wasn't happy for her, not that I was mad either...I was jealous.

Why is it that my baby has to suffer through cancer when someone who's older gets a free ride?  Why is it acceptable for me to think like that?  It's not like her having cancer would take it away from my daughter.  It's not like our lives would somehow be normal again if someone else's got torn apart.  So why can't I be happy for her and congratulate her like all the other people who's kids aren't living on the oncology floor at the hospital?

I hate that I reacted that way and I hate that I feel justified in doing it.

The Faster Way

Averi came back to the hospital today to finish getting the chemo for cycle 2 and then stay for several weeks until her blood counts come back up.  Our time at home always seems so short.  Just when we've settled into a somewhat 'normal' life, (if normal consists of your 19 month old sleeping in your room and waking you up at odd hours of the night) it's time to pack up yet again.

I was thinking the other day how lucky we are that Kaili still gets to come see Averi at the hospital.  Last year, because of the swine flu, kids under 12 couldn't visit people at the hospital from the beginning of October until April.  We have already been allowed to enjoy 2 months more than that.  I know flu season will start soon but I am so thankful for the time we've had to spend as a family, even if it isn't 'normal.'

Luckily Averi has been feeling much better since getting the zofran and even started eating well on Sunday...just in time for the trip back for more chemo.  Since we didn't start this admission with a trip to the OR or the PICU, we started at the Day Hospital.  I was told that the point of the Day Hospital was to get the chemo started faster, without having to do all the admission paperwork, and then being transferred to a room later on.

When chemo was finally started 3 1/2 hours after our arrival, Averi and I were a little concerned about how long the slower way of just being admitted to the floor would take...

We did finally get moved to a room on the floor, that didn't consist of a curtain wall (which is great for napping babies by the way), and spent the rest of the day hanging out as usual.

Clapping

I realized today that some of Averi's recent accomplishments have been overlooked as life has taken it's toll.  I am proud to say that sometime in the last month Averi has learned to CLAP!  It is super cute and very nonrhythmic, but clapping none the less.  She gets better at it everyday and will do it any time you say, "YEAH!"

She has also become very proficient at blowing kisses.  This happened in October when she was in the hospital for her first round of chemo.  She makes kisses and puts her hand over them but never really blows them away.  I love it!

Come on Zofran

On the way home from the hospital yesterday, I stopped to pick up Averi's Zofran (nausea medicine) only to find out that it was out of stock and had to be ordered.  As I drove away, all I could think was that she better not feel crappy between now and "this time tomorrow" (as the pharmacist said) or I was going to be really mad.

Mad doesn't even begin to describe my feelings at 3:30 this morning as I held a towel under Averi's chin for over an hour as her body repeatedly heaved.  I got to a point where I just stopped trying to go back to sleep because my feet kept getting tangled in the sheets as I panicked to grab the towel, turn on the light, and get Averi sitting up so that she wouldn't aspirate on her throw up.

We all must have eventually fallen back to sleep because the next thing I knew it was time to feed her breakfast...right, like that's going to end well.  I left her in her booster with her bib on until she was done eating and her tube feed was finished, just in case it didn't stay down.  Then she pooped.  I laid her down and turned around to go get a diaper just in time to hear her lose her breakfast on the carpet.

Needless to say, Averi spent the rest of the day wearing a bib so that she wouldn't get her broviac dressing dirty/infected and I spent the rest of the day jumping at every sound she made (do you have any idea how often she blows raspberries?) and keeping a rag on my shoulder just in case.

By the time Dan got home with the zofran tonight, she was happy as could be and in no need of it.  Little does she know, we will be giving her some when she goes to bed tonight.

Home Sweet Home - Part 3

As part of the chemo regimen for cycle 2, Averi has to get a big nasty shot in her leg after the first 2 days.  Since she got her last dose of chemo during the night, the nurse woke me up this morning to let me know that they were icing her leg in preparation for the shot.  She said it feels a lot like a flu shot, in that it hurts to get and stays sore for a while, and she had been stressing about giving it all night.

So, with an iced leg and two nurses holding down her sleeping body, Averi got her shot.  Did she scream?  No. Did she cry?  No.  Did she fuss and then roll over on her side, put her thumb in her mouth, and go back to sleep?  YES!  It was a miracle.

After that we were ready to go, except for that nagging feeling that something was wrong with her throat.  I'm hoping it's just sore from being intubated, but she keeps waking herself up and crying when she coughs and gagging on everything she eats.  I had to fish a tinny piece of fruit out of her mouth yesterday after she gagged on it several times and almost threw up.

When I asked the doctor to look at her throat before she went home, just so I wouldn't have to worry about it at home, he told the nurse that he might want to keep her another night.  That's what I get for being cautious.  Luckily, her fellow came in, looked down her throat, and said that it was red but not infected and we could still go home.

So, by the end of today we found ourselves all at home together as a family...until Tuesday anyways.  The girls and I snuggled up to read books and Averi did some texting.

It was wonderful.  Thank goodness for happy moments!

Feeling Yuck

Let me begin by saying that I forgot to take any pictures today, so I risked waking my sweet baby to take this picture for you:

Today was a long day.  Apparently there is no one week waiting period like last time before Averi starts feeling yuck.  She wasn't horrible, but you could definitely tell she didn't feel well because she kept whimpering and didn't even want to cuddle.  She even feels warm to me but doesn't have a temperature.

When I told the doctor about it he said, "Yeah, the meds we are giving her are very concentrated and can cause flu-like symptoms."  Oh, so now you have decided to tell me this bit of unimportant information?  He did say that it would go away about 24 hours after the meds are complete.  Come on Friday!

I'm a little bit concerned about Averi's throat.  She is spoon feeding just fine but when I tried to feed her with the honey bear it was a battle.  She cried and turned away and wouldn't take any consecutive swallows.  She also gagged really bad on a small piece of fruit I gave her.  I think her throat is either really sore from being intubated so much recently or maybe some damage was done.

In good news, the discharge nurse came in today and said that we might get to go home tomorrow and stay there for a few days until it's time for next week's session (after which we will be staying here until her counts come back up again).  We will have to wait and see how she is feeling.  Hopefully things will work out and we can be together for the weekend.

Cycle 2 Begins...Finally

I'm assuming the bone marrow results were good because they started Averi's cycle 2 chemo this afternoon.  This cycle is a bit different, consisting of four 3 hour sessions every 12 hours (did you follow that?).

Averi did really well with the chemo today, but we will wait and see how she is doing tomorrow after there is more of it in her system.  Apparently this is a really concentrated version of Cyterabine, one of the drugs she gets during the other cycles, so this is going to be "the hard cycle."  Yipee!

Her least favorite part of this cycle is having to get eye drops every 6 hours to prevent her eyes from burning or being damaged.  Her beautiful almond eyes are small to begin with but when she squeezes them shut there is no getting in.  Oddly enough, I had more than one nurse tell me that giving eye drops is their least favorite thing to do (Really?  because I thought stabbing someone with a large needle would suck).

Today was also somewhat entertaining because the nurses had to do tons of blood draws.  As part of the study that Averi is taking part in, they needed blood work 8 times, at different stages during the therapy.  Thank goodness for central lines and not having to be poked that many times (as long as it doesn't get infected!).

Other than that, Averi is doing awesome and eating like a pro because the steroid she's on for her breathing makes her hungry.  I think I've said this before, but it would be wonderful if she could permanently be put on steroids.  Oh well, I'll take never coming back to the hospital if that's the alternative. :)

(Dan brought the camera tonight so I promise lots of pictures for tomorrow.)