Can't Keep Me DOWN

Happy B-Day Hubby!

2011-07-18T16:03:00.000-04:00

Averi went out with her man for breakfast this morning to celebrate his birthday. They were both very annoyed with my taking their picture during their special moment. :)

Happy Birthday Sam. Averi loves you!

I Don't Need No Stinkin' Pump

2011-07-17T21:31:00.000-04:00

We have slowly been adding more straw-sippy cup feeds into Averi's daily regimen (thank you Tang, you are my hero). The goal is to have her drink four 4oz. cups a day, along with the baby food that she eats orally.

Guess what? Yesterday, it finally happened! She drank all 4 cups!!! I swear, I thought this day would never come!

She was still short a few calories so we had to push an ounce of formula through her G-tube with a syringe, but we didn't have to hook up her pump at all for the entire day! (I hope the !!! are relaying to you how big a deal this is!!!) I am SO proud of her! Maybe one day we won't even need that dumb G-tube...one day.

Germ Fest...I Mean - Animal Day

2011-07-16T22:29:00.000-04:00

Our neighbor's brother has a farm and we went to see his lambs today before they grow up and aren't lambs any more. I know Averi looks pretty frightened in this picture, but she's really somewhere between intense excitement, extreme hesitation, and stimulus overload.

I was a mean mom and wouldn't let her touch any of the animals (lambs, cows, chickens, kittens) and I was sanitizing everything in site. Do you think I'll ever back off on the sanitizer? Anyways, being out and about really wore Miss Averi out because she fell asleep mid-color on the way home.

Funny note: We stopped for lunch at a pizza buffet and the owner made a comment about "where's all her hair." When I absentmindedly responded that "the chemo took care of it" he first laughed because he thought I was joking and then started apologizing profusely and explaining that some babies her age still don't have hair. I guess MDS is such a part of our lives that I forget it's startling to see a baby with cancer. :)

After resting up, we headed over to the annual Down Syndrome Zoo Day. It was super hot, even though it was in the evening, but my girls were ready.

We walked around for a while looking at all the animals and then headed over to the party. Averi wanted to make sure that I pointed out that she and Kaili got their faces painted.

It might seem silly, but sometimes it's refreshing to realize that there are so many other people in a similar boat as you. It's always so much fun to hang out with other families affected by DS and not have to worry about explaining anything, but rather share your stories with a sense of understanding.

After eating, we headed over to the carousal. Things started out fine with Dan sitting on a stationary bench with Averi while Kaili and I rode the horses. Then Dan got adventurous and sat Averi on one of the horses. Of course she immediately grabbed on to the pole - probably the most germ infested item in the entire zoo. Since she'd already touched it and she was having so much fun I let her finish the ride, but once it was done I immediately ran to the stroller and doused her in sanitizer. Yah, that's probably not going to stop any time soon, huh?

She loved riding the horse and kept shaking the pole after the ride stopped, trying to get it to start going again.

To finish off the germ fest - I mean, fun time at the zoo, the zookeepers brought out some animals for us to pet. Averi really liked the albino snake and decided to pet it for a while. Don't worry, there was sanitizer for that too. :)

I know it keep saying this, but it was SO nice to be out in the fresh air doing things together as a family again - even if there were germs involved!

Scrub a Dub Dub

2011-07-15T20:46:00.000-04:00

It's been a week since Averi had her central line taken out and we have been given the go ahead to take off her band-aids and give her a BATH!

On a side note, we were all making jokes about how much Averi would miss the dressing on her chest but we forgot to take into consideration the band-aids that would replace it for a while. She keeps picking at the band-aids and pulling them off. This scares me because I don't want the site to get infected while it is healing. When the port is taken out the surgeon doesn't even stitch the hole closed so that if the site isn't completely sterile he doesn't close any germs in. Luckily, the site is looking great and the scab is already getting smaller - just in time for a BATH! (If you can't tell, I'm pretty excited about the BATH!)

When Averi's port got infected and they had to remove it (note the matching scar on the other side of her chest) there was a break of a little over a week and we were able to give her a bath the night before the new port was placed. That was over 8 months ago.

I have really been looking forward to the day that we could actually wash off all the hospital/vomit/stuff instead of just rubbing it around with a wet disposable cloth that smells like men's aftershave - and the day finally came. We didn't know how Averi would respond though, seeing as she hasn't even touched water for so long...

She had a BLAST!!! She LOVED it!!! It was so nice watching her enjoy herself while she splashed water all over the entire bathroom (and for once I didn't care).

We took a video of me putting her in the water for the very first time but forgot to take nudity into consideration :) so you'll have to settle for this very cute video of her splashing after warming up to the water for a couple of minutes.

Of course we like to keep things exciting in our house, so after about 10 minutes we saw brown mush floating up from behind Averi. Let's just say that adding water to poop that already has colace and milk of magnesia added to it twice a day is super yummy. After yanking her out of the tub, cleaning up the mess, and spraying the tub down with bleach, we put Averi back in the tub (with a little more water this time since she was having so much fun) and scrubbed her down. I'm not gunna lie, I washed her several times over. ;)

I have to admit, there isn't much that's cuter than a clean baby wrapped up in a towel - and she finally got to use her hooded towel that's been hanging in the bathroom for months now. I can't wait to give her another bath tomorrow! :)

Shopping

2011-07-14T22:14:00.000-04:00

I don't know if you know this, but being stuck at home all day everyday can wear on you after a while. I've had a couple of errands on my to do list for a while now and haven't been able to actually go do them because for some reason I can't leave Averi at home by herself. :) Since everything went so well last night, I decided to give it a try today. Yikes!

I'm not quite ready to take her on a full blown grocery shopping trip but I thought a few quick stops at a couple of stores would be fine. My first mistake was forgetting the baby wrap. With nowhere to put Averi (I was definitely NOT putting her in a grocery cart) I had to carry her the entire time. I also couldn't push a cart and hold Averi at the same time so Kaili had to walk, while I tried to keep track of her, and I had to carry a basket.

When my arm started to get tired from holding so much I asked Kaili if she could carry the basket for a little while. While she did put a valiant effort into it for about 30 seconds, it just wasn't going to happen. Just as I thought it couldn't get any worse - Averi fell asleep. So I had dead-weight sleeping baby in one arm, an awkward basket in the other, and no hand left to hold onto Kaili.

You should have seen me trying to pay for my 4 items at the checkout. :) I think I'll be complaining less about my 10:00 at night shopping trips from now on, and I don't think I'll be taking Averi shopping again any time soon!

An A Fair of the Heart

2011-07-13T21:25:00.000-04:00

Tonight was the annual cardiac celebration at the hospital. Once a year the children's hospital puts on a huge party for all of their cardiac patients. It is an awesome way to celebrate the second chance at life that many of them have been given through open heart surgery (like Averi) or any kind of heart care. It's also a wonderful opportunity to see the doctors who performed the surgeries and thank them by showing them the fruit of their labors.

We went for the first time last year and had a blast! When we got our invitation this year we only had one hesitation - taking Averi into a crowded room of germy people. Since her port is officially out and her ANC is over 1000, we decided that only 'normal' life is ahead us and we ventured out of the house.

I'm not gunna lie, I was a hot mess the entire night, but I still managed to have fun. We just held Averi the entire time and didn't let anyone touch her. Depending on whether she gets sick some time soon maybe we'll start going out a little more. ;)

Good Riddance Honey Bear

2011-07-11T20:59:00.000-04:00

We bought a new spoon and it is making a world of difference. The short handle and pointy end make Averi hold the spoon correctly. Now if we could only get her to stop flipping the spoon upside down when she gets it to her mouth. :)

We have also finally transitioned from the honey bear straw to a real big girl sippy cup with a straw. I have been looking for months now for a sippy cup with a straw, handles, and no valve (the thickened liquid can't get through the valve). So of course, Dan came home the other day with not one but 2 of these cups that he got for the price of one.

Averi has been really hesitant about using it because the straw is more squishy than the honey bear and she doesn't like the different feeling. I decided that she was going to overcome that today and did some tricky maneuvering I'd let her drink out of the honey bear for a while and then when she wasn't looking I'd sneak in the cup. She'd take a sip or two and then give up so I'd switch back to the honey bear. After doing this many many times, each time getting longer and longer, she finally finished her milk using the sippy cup.

I think I can officially say that we are done with the honey bear - and the weird looks it solicits. :)

Since a lot of things have been changing with Averi's eating skills lately, I decided to tinker with her feeding schedule as well. Pretty much for forever she has been getting feeds at 8, 12, 4, and 8. This is all fine and dandy when she gets everything through her G-tube, but she is becoming more aware of when we eat and she is eating more orally as well.

I decided to give her more of a toddler's schedule and decided to feed her 3 meals when we eat them and then a snack of milk after her nap and right before bed. We'll see how it turns out, but I'm hoping it will help encourage her if she eats when she sees us eating.

I really feel like she's making a turn for the better, eating wise, and I'm getting excited!

The End

2011-07-08T21:36:00.000-04:00

The End has finally arrived. Averi had her central line port taken out today!

We woke up early today for what should be her last trip to the OR for a very long time. It's funny, but we know one of the OR Nurse Practitioners by name and she always comes in to say hello and check up on Averi when she has a procedure done. She was SO glad to hear that we were finalizing the last step in being done with chemo.

I can't say that I'm going to miss this thing even a little bit. It has been more hassle than necessary and I am so glad to be rid of it and the worry of infection that goes with it.

Averi, on the other hand, is really going to miss having something to play with all the time. She is a 'taggie' kind of girl and loves that the dressing is always attached to her so it is easy to find and fiddle with. We've been joking about what she will do once it's gone.

Our wait ended up being a little longer than expected, so we enjoyed some cuddle time. Of course Averi was asleep by the time the nurse showed up to take her away.

Thankfully the procedure didn't take very long and the anesthesiologist was able to mask her instead of intubating (I always push for that now because she does SO much better with recovery when she hasn't had a tube shoved down her already wimpy airway).

The only big concern I had about today was the fact that they would have to start an IV and I remember all too well the time she came back from the OR with 14 holes. When I brought it up with the anesthesiologist he said they would try a few times and then possibly put one in her head. I told him I was totally fine with that and understood that even though they look horrid, they are easier to place and just as effective (and they wouldn't even have to shave a spot). Well guess what? After a few pokes they put it right on the side of her noggin. :)

I am so thankful to be done with the last 9 months of chemotherapy! Now everyone can congratulate us and I won't have to hesitate and point out that there is still something to take care of - because WE ARE DONE!

Moving On Up

2011-07-06T19:21:00.000-04:00

We went in for more blood work today and to make sure that everything is ready to go for having Averi's central line taken out soon. Her ANC is up to 1140. I love that her body is recovering so nicely!

I had the nurse thoroughly examine my 'back seat dressing' and she said that it actually looked really good. I told her I wouldn't be offended if they had to redo it but she insisted that it looked fine.

After leaving the clinic, we headed over to the floor to say hello to our 'family'. Averi enjoyed seeing everybody again, but especially her boyfriend Nurse Tim.

She just lights up when she sees him. I've threatened to tell his wife about the little love affair he's having with Averi, but he insists she already knows. :)

The Results Are In

2011-07-05T23:57:00.000-04:00

I've been avoiding this post because I don't quite know how to word it...here goes.

I finally got 'the phone call' today. It only took them an entire week to get back with us, but at least now we have the final results and we can be done with it (in reality I'm bummed we didn't hear the preliminary results last week but I'm trying to stay positive).

The oncologist said the biopsy looked fine. I felt a wave of relief wash over me...and then he kept talking. He said the pathologist made a note that one of the cells looked a bit off. They don't know what's making it look different and they aren't at all concerned about it. As far as chemo is concerned, she doesn't need any more treatments at this time. And then Mr. No-bedside-manner topped off the conversation by reminding me that there is always a chance that the cancer will one day return.

I hung up the phone and just sat there, confused about how I should feel. If there's nothing to be concerned about then why couldn't he have just said that everything looked fine and left it at that? Why remind an already over stressed mom that her daughter's cancer could return? I know that; I watched it happen to the little boy down the hall.

I'm thrilled that we're done with chemo but my overconfidence that everything was going to be super fantastic was just smashed. I suppose it's a time for celebration but now there will always be a small part of me that will always worry (and in truth it would have been there anyways).

Regardless of the small worries, we are done with this phase of our lives and ready to move on to getting Averi's port out and returning to 'normal' life!

I'm Repenting...

2011-07-05T21:13:00.000-04:00

I'm just guessing here, but I think a few people may be a little frustrated with the lack of posting lately (I use the term 'lately' loosely here). The truth is, I tried really hard to be up to date before we left for a very well deserved month long vacation, and it just didn't happen. Once we returned, the amount of stuff to write about was overwhelming and I found myself finding things to do to occupy my time so I wouldn't be able to post. I have since repented and am ready to update you on the amazing journey Averi continues to have. :) Thanx for sticking around (and for caring enough to be mad at me)!

(More of this cuteness to follow soon!)

You Know You've Lived in a Hospital Too Long If...

2011-07-05T21:05:00.000-04:00

You don’t touch anything without first putting on sanitizeror spraying it with alcohol
‘Getting out’ means roaming the halls while pushing a plasticcar and an IV pole
Showering involves getting your flip flops and several handtowel sized towels with the fluffiness of sandpaper
You know all the nurses, PCAs, and environmental servicespeople by name, and sometimes they come hang out in your room just to visit
Tons of strangers see you in your pjs and makeuplesseveryday (usually until about 1:00 in the afternoon) and you no longer thinkanything of it
Your alarm clock is the nurse coming in to do meds
You reorganize the nurse’s cart so that you can find thingseasier
All of your food is labeled with your name, room number, anddate, you can't remember the last time you had to cook a meal, and you are up to date on all the specials at Subway
You only respond to ‘Averi’s Mom’
You ask for something and the doctor says, “If that’s whatthe parents want then do it.”
Vomit is whatever
The highlights of your month are jewelry making night and free RaisingCane’s
Your bed consists of an egg crate, three blankets, and aboard in your back - and when you try to sleep in your own bed you can't get comfortable
You’ve succumbed to the fact that your life is dictated bysomeone else
You’re woken up by obnoxious beeping during the night andyou reset the IV pump without calling for the nurse
You say, “we’re going home” and you’re referring to thehospital

A Favor...

2011-07-04T23:36:00.000-04:00

I know, I know...I have avoided the blog for far too long. Don't worry, I have a super awesome excuse. We took a month long family vacation, away from hospitals, central lines, vomiting, pain, and upside down lives. It was amazing!!! (and now that we're home blog posts are sure to be coming soon :) )

So, here's the deal. While we were gone the Buddy Walk was looming closer and I was too busy enjoying the lack of responsibility (as much as I can have) too spend time asking for donations. So this is my call for support:

I'm not a big fan of asking people for money but the Down Syndrome Buddy Walk is one of the few things I believe in. Donating to the Buddy Walk helps support people just like Averi and the families that love and care for them. It supports the Down Syndrome Association of Central Ohio, which funds support groups like the one that we attend every month (that group is my second family), research, information for new parents who have just learned that their lives are following a new (and amazingly wonderful) path, and much more.

In order to get our team name (Can't Keep Me DOWN) printed on the back of our shirts we have to raise at least $1,500 by August 28th. Please, if you read this blog and Averi has touched your life in any way, help us reach our goal by donating.

If just 72 people (I think I have at least that many friends) will join our team for $21, we can reach our goal and each member will also receive a Buddy Walk shirt with "Can't Keep Me DOWN" printed on the back (you're not stylish unless you have one :) ). Plus, who can say no to this face?

Sterile Car

2011-07-04T21:57:00.003-04:00

Now that we have been home for a little while, we are starting to get a tiny bit adventurous and actually leave the house to enter the big bad world of germs. Today we went to play putt-putt as a family, figuring it was safe to take Averi outside and strapped in a stroller.

As I stuck my head in the car to unbuckle Averi I noticed that she was once again playing with the top of her central line dressing. She loves to comfort herself by fiddling with things and more times than not she pulls down the front of her shirt and picks at her conveniently placed dressing. Lately we have been wondering what she will do once the line is removed.

So...not only had she been fiddling with her dressing while we were driving, but she had pulled it off all the way down to the site. If she pulls it off a little we can always tape it back down until her next dressing change, but once the actual site is exposed and no longer sterile you are in trouble.

So I buckled her back in, drove back home, got a dressing change kit, and drove back to meet Dan and Kaili. Now I don't know if you're aware of this but the parking lot of a putt-putt facility is not on the top ten list of sterile locations. Given that knowledge, we pulled both car seats out of the back seat, closed the doors, and turned our back seat into a 'sterile' field.

Oh, and did I mention that this was my first dressing change to ever perform by myself? I'll admit that it didn't look half bad when I was done, but I will definitely have the nurses look it over the next time we go in to the clinic. If that's not an adventure, I don't know what is!

PT Fun?

2011-07-03T22:35:00.001-04:00

Sometimes Averi does things out of the blue that totally surprise me. I have a typical child, so I know all kids get to a point where things just start to click for them, but as you may or may not know, anything new that Averi does takes a ton more time and effort - and seems to mean more too.

Today she was chilling on the couch with me and decided to pull up onto her knees all by herself. Once she started getting a reaction and laughing about it, it turned into a game and she repeated it enough times to get on camera.

I love her little personality. She cracks me up, even when she's working her butt off to do it. I think we may have just stopped the world's turning for a brief moment when we found a way to make PT fun. :)

Forward Facing

2011-07-02T23:15:00.021-04:00

Keeping Averi in the infant carrier has been very convenient. Not only does she weigh in at 19 pounds making it easy to still carry her around but I love that during the few weeks we're home between cycles I can put her carrier in the stroller and completely cover her with both visors (keeping the germs at bay).

I've always said that we would convert her to forward facing when she turned 2, but it seemed silly since she didn't even get a car for several days after her birthday. Now that she's done with chemo, there are no more excuses.

I can't believe how old she looks. Kaili loves having her sister facing the same way so they can play together and Averi loves being able to see everything. I can tell riding in the car is going to be lot more fun now.

In case you're wondering, we still haven't gotten the results from Averi's biopsy and yes, it's a 3 day weekend. After not hearing anything on Thursday I called yesterday and left a message with the nurse hoping to at least hear the preliminary results even though we couldn't get the port out. I never heard anything back. By the time Tuesday rolls around and the clinic is open again we should have the final results. Oh well.

Checking off the List

2011-06-28T20:23:00.000-04:00

Averi's bone marrow biopsy and aspiration went very smoothly today. Thankfully it is a very short procedure and the anesthesiologist was able to just put a mask on her instead of having to intubate. That makes the recovery so much easier and faster since her throat is so flimsy to begin with and irritating it makes it really hard for her to breathe. By the time she was brought back from recovery she was sitting up and acting like nothing had happened.

Now for the waiting. The final results take a whole week to come back but the preliminary results take 2 days and if they look clean then we can go ahead and schedule a time for her central line to be taken out. That means that if everything runs smoothly she could get her line out on Friday. I know it's a long shot but it would be really nice to enjoy fourth of July weekend with a lot less worries.

Why the Drama?

2011-06-27T19:08:00.013-04:00

The doctor called on Friday to let us know that Averi's bone marrow biopsy is scheduled for tomorrow. The only stipulation is that we need to have her blood work done today to make sure her hemoglobin is over 10. If not, then she needs to have a transfusion of red blood cells tonight before going to the OR in the morning.

(Enjoying some much needed sunshine! She's pretty excited...)

After Friday's call I immediately called our home health nurse and asked her to come over in the morning to draw Averi's blood so that there would be enough time to have it processed and get a transfusion if needed. She said she'd be here at 8:00.

By 10:00 I called to find out where she was and she said she never got the orders that I had faxed over...riiight. Then she had to go see another patient. Long story short, she showed up at 1:00 and left by 1:30 to drive 30 minutes to the lab that would then process it and send the results to our doctor who would then call us. I guess she thought that left plenty of time for us to get a 2-3 hour transfusion if need be.

I've been left a little frustrated. The good news is that Averi's hemoglobin came back at 10.2 so there was no need for a transfusion and we are good to go for tomorrow. Why does everything have to be so dramatic?

Her ANC was 954, which means her marrow is continuing to improve and recover. Hopefully everything goes well tomorrow and there are no more blasts. For some reason I was super nervous about her last biopsy but since that one came back clear of any leukemic cells I don't really have any doubts about this one. After two more rounds of chemo it can't have gotten any worse.

Now Don't Start That Again

2011-06-26T23:59:00.004-04:00

Today was the big day, the first day with no antibiotics. I was a hot mess!

Let me give you a refresher on what happened the last time we finished giving IV antibiotics at home. The last dose was given on Thursday or Friday. On Saturday afternoon we flushed her lines with saline and heparin to keep them from clotting. Within an hour she was mottled, cold, had a fever, and projectile vomiting.

I did not want a repeat! We decided to flush her line in the morning so that we could keep a close eye on her for a while before putting her in bed. After a few hours I started feeling a little better, until I remembered that when she got poop in her caps the first time she didn’t show symptoms of being sick until a few days later. Needless to say, I watched her like a hawk.

She was fine all day until right before bed. Dan told me that she felt a little warm as he was laying her down and he decided to take her temperature. It was 99.8. Not quite a fever but not normal either. Then he told me that he almost didn’t say anything because he didn’t want to worry me (good thing he rethought that one).

Now I can’t sleep and I have been checking her temperature every 30 minutes. It has gone down a little and she is acting fine so I think I might try to get some sleep. We’ll see how it goes…

Open Mouth, Insert Food

2011-06-25T21:47:00.009-04:00

Now that Averi is feeling a little better and we are keeping her drugged up on zofran, she is eating orally. This is a big deal since she has been nauseous for so long and was on IV fluids up until the day she was discharged.

I decided to give her a spoon and a bowl today to see what she would do. I was VERY impressed!

She refused to hold the spoon any other way but at least the food was making it to her mouth. Maybe this whole self feeding thing is going to be easier than I thought.

Come on Antibiotics

2011-06-21T23:17:00.011-04:00

Today was our first visit back to the Clinic since coming home. I was actually pretty glad because I had some concerns to voice to the doctor and I was curious how her blood work was doing. Thankfully her ANC was in the 800's, so it is on it's way to recovery.

(Watching PBS while waiting on blood work. Kaili was making sure Averi didn't fall off the chair.)

This morning was Averi's last dose of Flagyl, the antibiotic to treat her C. diff. However, her IV antibiotics go until Saturday. Remember how I told you that she got the C. diff in the first place because she was on antibiotics? I told the doctor that it made no sense to me to stop treating the C. diff when she was still on other antibiotics that could just encourage her to get it again (once you have C. diff, your chances of getting it again go way up). Thankfully she had no problem extending the Flagyl until the day after the IVs are done.

My other concern is the fact that one of the bacterias growing in Averi's blood is the exact same one that set up shop in her broviac line after doing IV antibiotics at home and ultimately led to her PICU stay. The next steps for Averi are having a bone marrow biopsy and (if it's clear) getting her broviac out, hopefully sometime soon. So I asked if we could extend her antibiotics until she had her broviac out so that there wouldn't be any chance of infection in the line. She said no.

While she does understand my concerns, she said that we wouldn't do that if Averi was going to get another round of chemo and we just have to trust that the antibiotics are doing their job. That didn't do much to make me feel better. She did buffer my fears a little by scheduling more blood cultures to be taken when we come back next week, but the truth is that if Averi's going to get sick it's going to happen before we come back.

She's going to schedule the biopsy as soon as possible since Averi's ANC is closing in on 1,000 and then we can get the port out and be done with the sepsis worrying forever.

Our Little Drug Addict

2011-06-18T23:12:00.001-04:00

I’m starting to wonder if coming home was such a great idea (which is only said in jest because being home is always the best option!). Averi has quite the medication regimen and we are missing the night nurses who used to noisily come in the room and give the meds for us. :)

Yesterday when we got home, the home nurse came and oriented us on giving Averi her IV antibiotics. She was late, there were lots of silly papers to sign, and we already knew how to do it so it was a fun visit.

After she left I had to sit down and write out a med schedule so that we knew when all the ‘every 6 hours’ and ‘every 8 hours’ medicines were due. That’s when I realized that Dan and I were going to have to take turns getting up all through the night in order to stay on track. One of stayed up till 1:00 while the other one got up at 3:00. Judging by how tired I am today, it’s going to be a long next few days.

Luckily the IV antibiotics don’t take quite as long to administer as the ones did back in October. This is because one of them is in a vacuum bottle that slowly administers itself. It is the coolest thing ever!

(You hook up the one on the left and the balloon slowly deflates over 30 minutes until it looks like the one on the right.)

Don’t worry, we only have to do this for another week. After that there will be plenty of time for catching up on lost sleep.

Together at Last

2011-06-17T22:19:00.001-04:00

Averi woke up with an ANC of 264 and negative blood cultures, and that meant we got to go HOME!!! I can't believe the day has finally arrived. Every day for almost the last month I have looked at this sign on our door and known that one day it would actually be meaningful.

Today was the day we got to take that sign down, pack it up, and go home hopefully never to return.

There is a special tradition on the Hem/Onc floor that patients get to ring a bell announcing their final departure. Dan took off work so that we could all be there as a family to declare our happy news. It was a group effort to ring the bell, but then again so was the journey.

Ringing the bell was much more emotional for me than I thought it would be. Living at the hospital has become our life and I teared up in sorrow for the friendships we are leaving behind just as much as I did for the joy of putting this all behind us.

So many people at the hospital have touched our lives during this journey and they all came to celebrate with us as the bell sang out our victory. To say it was joyous doesn't even come close.

After ringing the bell, Averi took a short nap while I took out our cart load for the last time. Then the moment finally came where I picked her up in my arms and carried her off the floor and out of the hospital like it was no big deal. As we walked through the halls, the only visible signs of our time spent there were the mask on her face and her shiny bald head.

We are SO excited about being a family again. There are still several steps left to take before this part of our lives is truly over, but at least we are one step closer to the finish line.

GI Jane

2011-06-17T22:01:00.002-04:00

I decided a few months ago that I was no longer going to be upset that Averi isn't crawling because it makes living in the hospital a little bit easier. She stays on the play mat and doesn't try to wander off onto the dirty floor. So of course she would pick today, her final day in the hospital, to decide to learn how to crawl.

It may not be pretty to the untrained eye but to me it is absolutely beautiful! She is getting on and off of her tummy correctly, alternating her arms and legs, and getting from point A to point B without crying.

This truly marks the beginning of a new and more exciting chapter in our lives. The best part is that every single one of her therapists came at the same time to say goodbye today and they were all able to witness her success. It was very rewarding. Little Averi has come such a long way and we are so proud of her!

If it's Making You Sick Then it Must Be Working

2011-06-16T22:05:00.000-04:00

We finally found the answer to Averi's puking woes - Flagyl. The oral antibiotic that she's on to treat the C. diff can apparently cause nausea. So why is it that no one has told us this until now?

The nurse today said that she had C. diff once and the flagyl made her extremely sick. She didn't want to eat anything and really couldn't because everything (and then some) came right back up. This explains a lot, like maybe why Averi puked another 2 times today and doesn't seem to be doing any better even with antibiotics on board. Now we can stop worrying about what's causing her to be sick and stop trying to feed her so much until she's done with the Flagyl (which isn't any time soon).

The nurses have been very helpful today. The night nurse came in with an even better solution for keeping Averi's central line caps clean. She used a velcro-like sticker that is normally used to hold catheter lines on your leg. It's wonderful! Why someone didn't come up with this idea like say 8 months ago is beyond me.

Averi's just excited that she has one more thing stuck to her that she can pick at.

Her anc dropped a little, down to 230, but it is still above the 200 mark. This means that if her cultures come back negative tomorrow and her counts don't drop at all...she'll be able to go home tomorrow. I'm trying really hard not to get my hopes up and jinx it.

E. Coli Blood

2011-06-15T22:18:00.002-04:00

It wasn't a contaminate. Monday's cultures came back growing E.coli and another gram negative bacteria. Hmmm, I wonder how E. coli could have found it's way into Averi's blood. Oh, maybe it was from when she got C. diff poo all over her central line caps. I dunno.

I tried giving Averi a half volume tube feed this morning, since she was doing better eating last night, but it just all came back up. I can't figure out what's causing it. It's too late to be from the chemo or the 24 hour stomach bug we all had and the C.diff should pretty much be under control. Who knows?

Surprisingly Averi's ANC is up to 312 and even though she is nowhere near feeling great the doctors said she can go home when her blood cultures start coming back negative (showing that the antibiotics are working). This is great news since we are coming up on our three and a half week mark and I am pretty much done with all this drama.

Not so Glorious

2011-06-14T22:00:00.004-04:00

Averi's ANC only stayed at 0 for one day and is on it's way back up at a whopping 144 today. While I'm glad that she's making a recovery I can only wonder how long they will keep her here since she has so many other things going on.

Fortunately the antibiotics are starting to kick in and by this evening her appetite was slowly coming back. She even ate some baby food and freeze dried fruit pieces.

As it turns out, her blood cultures came back positive for gram negative rods. Of course they did. It's not like she has enough going on right now. So they added yet another antibiotic to her regimen, making it a total of 4. I really hope this is just a contaminant that was on the edge of her line after she pooped on it and it didn't really get into her blood.

I had a sad realization today. I found out that if her ANC gets high enough Averi can be discharged while she is being treated for C. diff (which is a total of 10 days). While this could be sooner than later depending on what her blood cultures say, it also means that she won't be allowed out of her room anymore while we are here.

This is her last treatment and she can't even roam the halls having her last hoorah and saying her goodbyes. This is not how it's supposed to end. It's supposed to be more glorious and happy and carefree.

Good News and Bad News

2011-06-13T21:54:00.000-04:00

The good news is that Averi's ANC finally reached 0 today!!! This is the last time she ever has to go that low. Now all she can do is go back up.

The bad news is that she is refusing to eat anything and has a fever of 103. This means drawing more blood cultures and starting her on more antibiotics. This seems silly to me given the fact that she has C. diff because of being on antibiotics but the doctors assure me that it will not affect the C. diff treatment. Hopefully the fever is just from the C. diff and not another infection.

Don't Fall Down

2011-06-12T21:37:00.006-04:00

Averi seemed to be doing a little better today so Dan fed her some baby food. By the time he left at the end of the day and I tried to feed her she puked all over.

Of course she had just gotten her oral medication to treat the C.diff so the nurse had to give it to her again. I don't quite understand why they are giving her an oral med when they know she's nauseous and she has a central line. I've been told that the oral works better since it is actually going through her GI tract instead of just into her blood, but if it's not staying in her system long enough to go through then what's the point?

On top of that, the C. diff isn't just a stinky, watery poo. It's causing severe abdominal cramping, fever, and loss of appetite. Trust me when I say it makes for one very unhappy baby.

Then, while hanging out as a family tonight, I watched in slow motion as Averi fell over backwards out of the recliner (while snuggling with big sister) and hit her head on the bottom of the IV pole. She cried for a while and has a dent on the back of her head that is sure to be an awesome bruise tomorrow.

By the time I put her to bed she was acting completely normal but the doctors insist that she have a neurological exam every 4 hours. This consists of waking my sick, pathetic baby to shine a light in her eyes - every 4 hours all night long. Who knows when she'll ever be allowed a good night's sleep.

C. difficile

2011-06-11T21:20:00.001-04:00

I often wish that Averi could talk, sometimes it's because she's 2 years old and hasn't even said her first word yet, but mostly I wish that she could tell me what hurts and how she's feeling during all this chemo crap.

The puking has not subsided. In fact it has spread from Kaili to Dan and to me. Fortunately I set up for a constant to sit with Averi yesterday so I could stay home with Kaili because I woke up running for the toilet and immediately left. Averi puked after PT and laid around for most of the day.

It has continued through today and we've had to stop her feeds altogether again. Just when I thought we were going to get rid of her IV fluids we are back to square one. I wish she could tell me if she is feeling chemo nauseous or stomach bug sick. I wish she could tell me if her stomach hurts from intestinal cramping or just a lack of appetite.

As she has continued to pour fluids out of both ends, Dan came up with a better solution than my mega diaper:

He wrapped her caps in plastic bags and taped them shut. This works quite well, except when the poor nurse has to access the lines to draw blood or give meds. :)

Just as today was drawing to a close, the nurse came in to inform us that the C. diff tests came back positive. Super! Now she has been put on an oral antibiotic. The ironic thing is that Averi most likely got C. diff because the broad spectrum antibiotics she was on to treat her previous line infection also killed off the healthy bacteria in her GI tract, allowing the C. diff to take over. One thing just seems to lead to the next.

Bodily Fluids

2011-06-09T21:59:00.001-04:00

This morning the doctors decided to order a sample of Averi's poop to be tested for C. difficile, a bacteria that lives in the intestines and can cause stinky diarrhea. It is a nasty bug that is highly contagious so until the test results come back Averi has been put on restrictions that she cannot leave the room and everyone who comes in must wear a gown and gloves.

I kindly informed them that since they now wanted her to poop she wasn't going to. And I was right...for a little while.

Ever since she started throwing up last week we have slowly been increasing Averi's feeds. She has been tolerating them quite nicely and today was her first time back on full volume feeds. She did wonderfully all morning.

After putting her down for a nap I went to get lunch and returned to find her sitting up in her bed. Annoyed that she was awake after such a late night last night, I walked closer to find that she was covered in vomit and diarrhea. I instantly changed from annoyed to panicked.

The good news is that we were able to get her stool sample. The bad news is that we have to cut back on her feeds again.

As the day progressed, Averi continued to get more irritable and fussy. She would be perfectly fine and then start crying out in agony, unable to be consoled. The doctor came in to look at her and said that irritable bowels can contract at uncoordinated times causing sudden spurts of cramping. She ordered some IBS medication for Averi and surprisingly some Tylenol.

Then to top it off, right after the doctor left Kaili threw up all over the floor in the bathroom. Yes, there was germy puke all over my immunodeficient daughter's room with no way to open windows or doors to air it out. I have literally cleaned up smelly bodily fluids all day long! (and you guys ask why I don't want to be a nurse when this is all said and done) Dan wasn't feeling well either so I sent them all home and put Averi to bed as soon as the Tylenol kicked in.

I Got the Poo on Me!

2011-06-08T22:43:00.003-04:00

Apparently we can't quite find the right balance of Colace and Milk of Magnesia to give Averi. The poor thing is either screaming to get rabbit pellets out or finger painting. Tonight it was the latter, again. It's kind of like deja vu from when Dan was here last weekend.

Right after everyone left to go home Averi had a massive explosion. I changed her clothes and the bed and wiped down her tubes. Just as I was finishing up and getting ready to put her to sleep it happened again. To save you all the gory details, let's just say that she went through 4 outfits in less than 2 hours.

It was everywhere! Of course it wasn't exciting enough to just get poop on some things, oh no, she had to get it under her central line caps again. This time the nurse had the pleasure of changing her poopie caps and then drawing more cultures to make sure that nothing got into her blood stream.

By the time we were done with all that Averi was exhausted and past ready for bed. Worried that she would explode again during the night I came up with an awesome solution:

It consists of one size 3 diaper covered by one size 6 diaper wrapped in two washcloths. Oh, and did I mention that the only pajamas left for her to wear are the ones that don't have snaps down the legs? It's gunna be a lot of fun getting into that hot mess tonight for diaper changes.

Shaving?

2011-06-07T18:48:00.037-04:00

Averi gets several therapies several times a week. Most of them require work and may not be deemed as 'fun.' Therapeutic Recreation is the exception. I'm still not completely sure why it's considered a therapy but it's a lot of fun and Averi usually enjoys it, especially with the person on our floor, Mary.

The last time Mary did something messy with us it involved finger paints and Averi wasn't too thrilled about having the slimy goo on her hands. We gave her a paint brush and the problem was solved. I think between me being such a neat person and Averi not being able to take baths or touch anything that might get on her dressing/caps, she's not too fond of messes.

Today we tried something less slimy - shaving cream. We didn't know how Averi would respond so we started out slow...

She LOVED it!

By the end she was covered in it.

The best part was that it just washed right off with a wet washcloth. We will definitely be doing this again.

Thanks Great Grandma

2011-06-06T17:21:00.001-04:00

Last cycle, Averi only needed one transfusion each of platelets and red blood cells. Well today she doubled that.

Last night I mentioned to Dan that she was looking pale and that she might need some red blood soon. When we got up this morning I was informed that her hemoglobin was low and she would be receiving some red blood. Is it sad that I can read the signs of needing a blood transfusion?

I was actually kind of glad that she needed some more blood because great grandma has donated blood twice for Averi and last time she didn't end up using it and this time the blood hadn't been processed when Averi needed it last week. After all that trouble I was grateful that Averi finally got to use great grandma's precious gift (and so was Averi)!

This afternoon great grandma and grandpa offered to hang out with Averi while I took Kaili out for some fun. Unfortunately, they had to experience Averi's worst dressing change EVER.

I don't know if I've ever explained it, but there is a sterile dressing that covers the area where Averi's central line enters her chest. It has to remain sterile to prevent any infections from entering her blood stream and is changed at least every 7 days. Changing it requires everyone wearing masks, gowns, and gloves. The old dressing is removed, the site is thoroughly cleaned and allowed to dry, the area is covered with a skin protector that also has to dry, the line is taped down in a loop to prevent it from being pulled out if there is any tension on the line, and finally a new sterile dressing is placed over the site.

All of this has to be done without anything touching the site or contaminating it. Try doing that to a 2 year old and you will understand why it is a two person job and why we have to pin Averi down to the crib to prevent her from pulling off her mask or touching her chest. Fortunately, it usually only takes about 5 minutes.

Today's particular dressing change did't go quite as smoothly as it normally does. Just as the nurse was getting ready to put the new dressing on, Averi, who was already not cooperating as much as usual because she didn't feel well, pulled her arm loose and brushed it across her chest. She then had to be held down while the nurse went and got a new dressing change kit and redid the entire process.

Averi screamed the entire time (I don't know if it was more traumatic for Averi or my poor grandparents). When I got back this afternoon I noticed that Averi had petechiae (red dots of broken blood vessels) all over her face and head. We finally decided it was from the intense amount of screaming and straining she did during the dressing change.

Petechiae are due to low platelet counts but because that was the symptom that led us to having her blood checked and ultimately finding out that she had cancer it just sends up a red flag for me. I had the doctor come in and requested that she have some more platelets. He said that even though she just had some yesterday she was getting low again (obviously) and they were going to wait until tomorrow to give her some more but that they could do it tonight if I wanted. I made sure she got the platelets tonight.

The Storm has Arrived

2011-06-05T22:32:00.033-04:00

Averi started puking last night and it has continued throughout the day. The ironic thing is that we finally know how to best help her when she's nauseous and this is the last time it will matter.

Treating her went surprisingly well today. I told the nurse I was going to stop all feeds (especially tube feeds since it is incredibly mean to pump someone's stomach full of food when they are sick) and that we needed to start some IV fluids. She was doubtful but asked the doctor anyways. Apparently the resident asked her if that's what the parents wanted, and if so then she should do it. I had to laugh when I heard that. I guess we have finally earned some degree of respect around here.

(A few days ago, during happier times.)

We also had them start her on the zofran and phenergan. And guess what - she's over 2 now so they finally gave her her the okay to use IV phenergan. You know, the one that actually does something because it doesn't immediately get puked back up. It has been working like a charm and she has been sleeping really well.

She did need platelets today, which is just another sign that her body is responding to the chemo. Hopefully the yucks don't last too long so that we can go back outside again soon.

Unnervingly Calm

2011-06-03T22:12:00.001-04:00

I feel like we are sitting in the calm before the storm. Usually Averi is nauseous by now and the up-all-nights have started. She has been great all week. Other than finishing her antibiotics today, nothing much really happened. I'm not complaining, but the anticipation is killing me.

(My two favorite baldies! Great grandma and grandpa have been here helping us out.)

I spoke to Averi's PT this week and let her know that I'd rather not just skip crawling altogether. She has been working on standing and pulling-to-stand, since it is more age appropriate, but I really feel that there are certain connections that happen in your brain when you learn to alternate your arms and legs when crawling. She said she had no problem with that and had OT come in with her today so that they could work on crawling.

It went surprisingly well. She is still doing more of an inchworm motion, but she was getting from one side of the play mat to the other repeatedly...without complaint. The fact that she wasn't crying the whole time was the true miracle. If she's tolerating it then we are definitely moving in the right direction.

Fresh Air

2011-06-02T22:08:00.032-04:00

Averi's morning play times are becoming something of a habit. Luckily, there hasn't been any more poop involved since we decided to keep her in onesies, but it's still really early. Yesterday I decided that something needed to be done about our east facing window with broken blinds - so I taped a blanket over the window. Of course I was retaping it at 4:00 this morning, but it seemed to help. :)

Now that Averi isn't attached to any chemo and she doesn't have a fever and she's not feeling nauseous, we decided to be adventurous today. We went outside!

There is a playground on the roof of the third floor that patients are allowed to use (if they meet the above criteria) and for the first time since starting chemo in October, Averi was able to use it. Of course it was too cold to use during the winter, and the few times the playground wasn't covered in snow there was some other reason Averi couldn't go.

She loved it! We took a blanket to sit on and toys to play with (since everything out there was way too germy) and just soaked up the sun. We only lasted 15 minutes before her pale and fragile skin started to turn red, but the fresh air was SO worth it!

No More Chemo

2011-05-31T22:53:00.017-04:00

Today was momentous - the nurse took down Averi's last bag of chemo! Of course we still have to stick around until her counts do their thing, but there will be no more pumping poison into my baby's heart.

(Yes, we did take a picture of the bag coming down, special blue gloves and all.)

Averi seems to be doing well so far. She did need a blood transfusion yesterday, which always makes her happier and more energetic. Unfortunately, my grandma donated blood last week and it hasn't gotten to the hospital yet so Averi had to get someone else's blood. Either way, it means that her body is doing what it's supposed to after receiving chemo and we are on the right track.

Memorial Day… more like Labor Day

2011-05-30T19:00:00.012-04:00

This past weekend began pretty mundane, which in this family we relish. I packed my bags and began my weekend shift taking care of Averi at Nationwide Children’s – giving Tiffany some relief from being in the hospital 24/5. Due to it being Memorial Day weekend, I was looking forward to spending an extra day with my little angel.

Friday night rolled by relatively quietly without any issues. What a relief. This was going to be a nice relaxing weekend. I would get to spend some quality time with Averi and unwind from the day-to-day stresses of work. She was feeling much better due to the antibiotics and her temperature had dissipated so we could leave the room and go on walks or go to the kids’ room and play with the toys.

My relaxing weekend with Averi was shattered Saturday night. A rash showed up on her lower torso. Averi wasn’t too bothered by it at first, but by nightfall she was tugging at her hospital gown trying to scratch. The rash had spread up her stomach and back, all the way under her central line dressing on her chest. The physicians became concerned and order some Benadryl to help with the itching. This helped calm Averi down a bit so she could at least sleep through the night.

Sunday returned to relative normalcy. Though Averi was still a little agitated by the rash, it had diminished enough where we could play on the floor mat and the distractions would make her forget about the itchiness. We were having a good time playing when I stepped out to use the restroom. When I returned I saw a naked bum sticking out from under the hospital gown. Upon further investigation I found that Averi had scooted out of her diaper. Luckily, there wasn’t a mess to clean up.

What a cute little bum!

This morning I heard Averi start making noises just before 7am. I was not ready to get up and start my day off from work just yet so I tried to ignore her babbling and blowing raspberries. I dug my face into my pillow to block out the light. I went unconscious for what seemed like another hour or so, but when I looked at the clock it was only 15 minutes. Averi could now see me stirring and began to make her loud calls for attention. It was hopeless going back to sleep now.

I rolled out of bed and made my way over to Averi’s crib. I stopped in horror – no shock. Averi looked up at me with the biggest grin seemingly saying, “Good morning to you dad!” She was sitting in her bed completely naked playing in brown goo. She had wiggled her way out of her hospital gown and stripped off her diaper. Afterwards – and I say afterwards because her diaper was still clean – she decided to poop all over the bed and spread the good cheer. Averi had used the brown spread and was redecorating her bland, all-white crib.

Poop was all over the bars, the sheets, her hands, her central line caps, her head…. you get the picture. To top it all off, Averi had completely removed her central line dressing thus leaving the site exposed. This is a HUGE no-no, especially with an inordinate amount of bacteria-laced feces in the vicinity. Needless to say, my Memorial Day ended up being more of a Labor Day as I spent the rest of the morning cleaning EVERYTHING, especially Averi.

After all was said and done, my rational mind told me I should have taken a picture before cleaning everything up, but the worried father in me just wanted to get his daughter who has a compromised immune system cleaned up as soon as possible to avoid any infections or contamination. I hope I wasn’t too late. They took some cultures and we’ll have to watch her closely to make sure she didn’t contract any infections.

Needless to say, Averi is no longer allowed to sleep in just her hospital gown. We now keep her in a onesie as much as possible to avoid any similar situations. What a day to remember!!
~ Dan

Reality Check

2011-05-27T18:35:00.085-04:00

We've met many wonderful and amazing people while living on J5 (the Hematology/Oncology floor) but some of them touch you more than others. One family we've grown close to has a 1 yr old son with leukemia.

Our journeys have been very similar. Just like Averi, R has to stay after each chemo treatment until his counts recover, so they are stuck here for weeks at a time. His mom stays with him overnight like I do with Averi, they have another son who is 10, and his parents always have smiles on their faces.

His mom and I often visit in the halls during nap time and exchange our frustrations and changes in life. R and Averi often had 'dates' in the hall that involved waving at eachother from a distance and not touching anything. :)

Last time we were in the hospital, R finished his last chemo and had his central line taken out. I was sad to see our friends go, and a little jealous since they had started chemo after us, but mostly excited that they were finally done.

Yesterday, R was admitted back on the floor. In just over a month his leukemia has come back. The options they were given for treating him this time were even more brutal and have extremely low chances of success. He was moved to the hospice room at the end of the hall today.

My heart is breaking in so many ways. It's just too close to home. I can't even imagine what his parents are going through - and yet all I can do is realize that that could be us in just a month or two. His biopsies were clean just a month ago and now he's living in the hospice room. His parents only had 7 short months with their healthy baby boy.

I have no idea what to do for them, because really there's nothing I can do, and I'm a mess. I feel so helpless. I hate cancer and I hate the void that it is going to leave in R's family. I want them to know that they will be able to see their son again. That, yes this sucks, but families are forever. I want them to realize how blessed they are to have R and experience the joy he gives them, even when it comes with trials. I want them to be happy.

Stupid Poop

2011-05-26T20:12:00.004-04:00

Why do I always speak too soon? Last night as I was laying Averi down in her bed for the night, I thought her head felt a bit warm. The nurse had just taken her temperature with a tempadot (disposable thermometer) and it was normal. I decided to pull out our speedy digital thermometer and take an oral temperature. Sure enough, she had a fever.

Fevers for an oncology patient are totally different. As always, it meant drawing more blood cultures, starting IV antibiotics, and constantly checking vitals. As the night progressed, her blood pressure dropped low enough that they had to give her a large saline bolus in hopes of adding some volume to her blood. That only lasted a little while before she dropped and needed another bolus.

By this morning, the nurse practitioner came in and told me that if she needed another bolus, Averi was going to be transported to the PICU. The nurse continued to do vitals every 30 minutes for the entire day. Poor Averi is such a trooper and put up with it even though she felt horrible.

When the doctors came to do rounds, they informed me that the cultures taken on Tuesday had grown gram negative cells and they added a third antibiotic. We all know what that means - the nerve raking cap change I did at home didn't help. The poop got into her blood anyways and now she's sick. Ahhhhh!

Thankfully her blood pressures have stayed level today and she hasn't had to go down to the PICU. Hopefully the antibiotics start to kick in soon and she feels better tomorrow

The Last Time

2011-05-24T20:03:00.001-04:00

It finally happened! Today they hung the first bag for Averi's last round of chemotherapy!!!

I'm finally starting to let myself get excited. I know we still have to be at the hospital for another month or so, but this is the last time. It's the last time I have to haul my cart load of stuff into the room and unpack. It's the last time we have to sit and wait patiently for Averi's blood counts to hover, drop, hover, drop, bottom out, and finally come back up. It's the last time our family has to be separated so much. It's the last time Averi has to be nauseous and puke simply because her body is being pumped full of poison. This is the last time!!!

Today was the fastest we have ever gotten out of day hospital and into a room. The doctor liked her blood counts from yesterday so the nurse didn't have to redraw them today and then wait for results. The floor is also really full and they were trying to put someone else in our room so the nurse went ahead and moved us in before the chemo was even started. It was really nice.

My only complaint (coming from my "this is the last time and has to be perfect" thought) is that we are in the corner room, so we have to share an anteroom with the room next door. It just makes me nervous because it's easier for other people's germs to get into Averi's room - especially when our neighbor has a sign on his door requiring everyone to wear gowns, masks, and gloves to enter.

After telling the doctors about Averi's little mishap with the poop getting under her central line caps, they decided to draw blood cultures just in case. That way if Averi starts to get a fever, we already have something growing instead of having to wait 48 hours for the cultures to grow. At least they didn't start her on antibiotics (normal protocol when they draw cultures) since it happened a few days ago and she isn't showing any signs of being sick.

Oh, and did I tell you? This is the last time!!!

So Close

2011-05-23T11:15:00.029-04:00

I may or may not be 5 weeks behind on posting. =P In my defense, this last cycle has been a bit busy, in true Averi fashion. It hasn't been all bad, but it certainly didn't go as smoothly as my naive brain wanted. So, sit back and enjoy the ride (hopefully in fast forward) ...

Averi's counts have finally reached a suitable level to start the last cycle of chemo - 2747 to be exact. As always, it took a little longer than we had hoped, but that's how Averi likes it.

She is scheduled to start the last round tomorrow, but to be honest I'm not letting myself get excited until that last bag of chemo has been hung and started. Luckily, her counts are high enough that the chance of them dropping down below 1000 in one day is really slim. We are so close, hopefully everything goes well tomorrow and this will all be over soon!

'The Problem'

2011-05-22T19:32:00.001-04:00

When my dad went to pick Averi up this morning and announced that, "we might have a problem," I came sprinting. You never know what that means with Averi, but this time it meant POOP. Luckily she had scooted herself into the kitchen because 'the problem' was in piles all over the floor.

It took 2 people to strip her down and keep her hands out of the mess. I might have said this before, but it is really hard to thoroughly clean a person without being able to put them in water. As I wiped her down over and over again with wipes, I realized that 'the problem' had just gotten scary. Her central line ports were covered in poop as well.

I was able to clean one of them off but the poop had gotten pushed way under the cap on the other line and I couldn't get it out. The only solution was to change the caps on the lines and clean underneath them. I have seen this done many many times (every three days when inpatient) but actually doing it myself was totally different.

I got out all my sterile supplies, put on my sterile gloves, and got to work while my mom handed me many many alcohol wipes. Normally no one cleans the end of the port when the cap is off because the risk of wiping something into the port is too high, but I didn't have that option, this port needed to be cleaned...and fast.

It took what seemed like forever and I was dripping sweat by the end of it, but I got those ports cleaned and those caps changed. Thankfully, Averi is used to all these medical shenanigans by now and does an awesome job holding still.

Now, the only thing left to do is wait and make sure she doesn't get sick...no pressure.

Still Not There

2011-05-18T17:18:00.016-04:00

I have been trying really hard to still get some PT and OT in while we are at home. I discovered that an upside down plastic shoe box makes a great bench for Averi to sit on and the couch with no cushions makes a great place to work on kneeling.

Averi has been tolerating her orthodics really well (I was a little worried since she's never really had shoes on her tiny feet before) and is even standing on her own for 10-15 seconds when propped up against the coffee table. I know that sounds like a really silly accomplishment to a typical parent but it is amazing compared to before when she wouldn't even bear weight on her feet at all. She is moving in the right direction and we are so proud.

P.S. Dan took a video of her standing but she is very grumpy while doing it and it looks more like child torture so I will wait until another time. :)

After visiting the clinic on Monday, Averi's ANC was 774. Since it was on it's way up again, they scheduled us to go back today. Of course my hopes were smashed by a measly 874. I really thought she'd be admitted again by the end of the week since tomorrow will be 2 weeks that she has been home. She will get there eventually, just on her own schedule as always.

Up and Down

2011-05-12T21:35:00.005-04:00

Monday's ANC - 799.

Today's ANC - 560.

How do such tiny little blood cells mess with our emotions so easily? Can't we just get this last treatment over with?

The Perfect Gift

2011-05-05T19:54:00.001-04:00

After dropping down to zero on her birthday, Averi's ANC doubled from 44 to 91 to 182. On top of that, she hasn't needed oxygen for the last two nights. Yesterday the doctors decided that if her counts continued to go up today and she didn't need oxygen, she could go home.

I woke up excited this morning since she hadn't needed any oxygen and went to find the nurse so she could tell me Averi's ANC. I had great plans of packing and being ready to go when the doctors made their rounds so we could be out before nap time. Of course it had gone down to 169.

By the time they made to our room at 11:30, I had already admitted defeat and was still in my pj's. Out of the blue they announced that Averi's counts have been trending upwards and they trusted us to bring Averi in if any problems should arise. Seriously, we can go home?

It was a total surprise and the perfect Mother's Day gift! I started packing in a hurry and then sat and waited for the discharge papers (the doctors couldn't be too nice and let us get out at a decent time). As always, Averi fell asleep 10 minutes before we were allowed to leave. Another nap time lost but another weekend as a family gained.

Just in case you were wondering, here is what moving out of the hospital looks like after 3 1/2 weeks.

And yes, moving in looks exactly the same. Babies come with baggage you know. (P.S. I will continue to call her my baby - regardless of the fact that she is now 2 - until she is walking and defined as a toddler by default.)

Bald is Beautiful

2011-05-02T22:17:00.074-04:00

As one last birthday gift, I decided to buzz Averi's head last night before she went to bed. It didn't quite go as planned. Her hair is so thin and wispy that the clippers just pushed the hair over and didn't cut them. So I moved on to plan B - scissors.

Before: (don't those pathetic eyes just melt your heart?)

I know it's not even, but the hairs are so far apart that no one can tell. It also would have been nice to get rid of more of it, since it has to be itching her to death, but at least the longer wispy hairs are all gone now. She now officially looks the part of a cancer patient.
After: As Great Grandpa Davis always says, "Bald is Beautiful!"

I thought she looked exceptionally beautiful today, maybe its because she's 2 or because the lack of hair leaves you dwelling on her gorgeous eyes, so I decided to take some snapshots.

She kept scooting forward to get to the camera so I eventually gave up and took some shots from above. Her smile is contagious.

Every now and then Averi does something and I feel like I've been given a short second to see her soul. For that brief period of time the DS melts away and I see the person inside who's not weighed down by that extra chromosome. I don't want this to come out wrong, because I wouldn't change a single thing about Averi, but it calms my soul to know that the perfected Averi, the spirit that I will spend eternity with, is still deep inside her.

For whatever reason, this picture is one of those moments for me (I think it's because it reminds me of Kaili when she was little):

Bald really is beautiful!

'Bird'day Girl

2011-05-01T20:51:00.104-04:00

I can't believe Averi is already 2 years old! I feel like life is crawling along right now but I also refuse to accept that Averi has blessed our family for so long. The last two years have been completely different than anything I had planned, but I wouldn't change them for the world!

To celebrate her birthday, I made a milk, soy, oat, and rice free cake just for Averi (don’t worry, I also made 4 dozen more yummy cupcakes to share with everyone at the hospital). I modeled the cake after Averi’s favorite toy, a little bird that she loves so much the color is starting to rub off.

Other than signing bird when she saw it, she wasn't as excited about the cake as I thought she would be. All the nurses came and sang happy birthday and then we handed the cake over to Averi. She put one finger in the icing and decided she was done.

Thinking she would get the idea if she tasted the cake, I put a piece in her mouth. She then proceeded to cry and gag until I dug the cake back out of her mouth. It was a great display of my awesome parenting skills for the nursing staff. :)

It was a good thing we put her in a gown so she wouldn't get icing all over her dress when she dug in.

(Sisters telling birthday secrets.)

After partying in the family lounge down the hall, we headed back to Averi's room. Kaili insisted on bringing her new tent to the hospital so she and Averi could sit in it while opening presents.

Averi, always the cautious one, wasn't too energetic about opening the presents either. Kaili wasn't patient enough to let Averi warm up and opened almost all of them before Averi could even get her fingers on them. It was very funny.

On the rare occasion that Averi tore a piece of wrapping paper off, she wouldn't tear any more until that piece was removed from her presence. She gets her neatness from her mama.

Averi was very excited about her presents, especially the jumbo jars of baby sweet potatoes. My favorite was the new shoes we got for her. We tried them on her to make sure they fit over her new orthodics, and they did. The size difference with everything on is enough to make anyone giggle.

Although it was one more holiday to mark off that we spent in the hospital, it was still a lot of fun. Thankfully, Averi is young enough that it didn't matter where we were, and the nurses were great company compared to the empty house we would have had at home (since we can't have anyone over right now without first dousing them in sanitizer).

The only bad thing that happened today was that Averi's ANC dropped back down to 0 after two days in the teens, but it won't stay down for long. We will be out of here soon and moving on to her final treatment.

Averi, we love you so much and look forward to spending many more birthdays with you!

2 Years Old!

2011-05-01T20:50:00.083-04:00

Now that she's 2, Averi is accomplishing so much.

She weighs in at almost 19 pounds and is officially wearing 12 month clothes. She has 11 teeth and would use them to only eat sweet potatoes if it were up to her. She can stack 4 blocks, put coins in a slot, and point to her head, ears, eyes, nose, and mouth.

She loves mirrors and will smile and blow kisses to herself all day. Her second favorite toys, other than her bird, include anything found in a hospital setting - syringes, paper wrappings, and tempa-dots (disposable thermometers). She also enjoys drawing on the magnadoodle, toys with stretchy 'tentacles' that she can pull on, bubbles, and hitting balls to make them go down a slide.

Averi loves music and is always dancing. She likes to sit next to her star stacker, press the button on top, and bounce up and down - over and over again. The hospital provides a 'relaxation station' that plays soothing music 24 hours a day and shows videos of animals. It is always playing in her room and I have recently tracked down where to purchase it so we can have it at home.

Recently Averi's signing has really taken off. She can now sign mama, dada, please, all done, more, eat, play, clean, doll, bird, dog, cat, fish, ball, book, nigh-night (sleep), star, bye (blow kisses), and point. She is working on help, car and syringe (she needs to know how to ask for her favorite toy). She has started putting two words together, usually with 'more,' and she has even signed 'more, eat, please.' She is also getting more vocal and is really close to saying her first word.

Averi has passed several milestones this year, especially lately. She can clap, sit, roll, get in and out of sit, stand assisted for several minutes, and has started doing an inchworm crawl where she moves forward with her feet until her hands get stuck underneath her.

She has also trademarked many tricks, including blowing tons of kisses, acting surprised, impersonating a lizard (tongue out and to the side), blinking, giving hugs, showing you how big she is, and squeezing her nose if she thinks you are stinky.

Averi smiles constantly, making it impossible to be truly sad when you are in her presence. She is an awesome example of living life to the fullest and not letting the small things, or big things, get you down.

We are SO very proud of Averi and all that she is learning to do despite the many challenges she's been given. Keep up the good work Averi, you are amazing!

Guilty

2011-04-30T21:44:00.001-04:00

Today was the first day, since starting chemo in October, that neither Dan or I went to the hospital to see Averi. Now before you judge, Dan's mom was with her the entire day, so she wasn't alone...just parent-less.

We have lots of excuses - Dan spent the entire day taking apart and rebuilding our car engine, I bought and wrapped presents and made cakes, we are allowed to take a day off, blah, blah - but I have to admit that I feel pretty guilty. It's probably even worse because tomorrow is her birthday and we won't get over to the hospital until after church, so it will almost be 2 days without seeing her.

I know she knows we love her and it's not a big deal in the scheme of things, but I hate that we're even in a situation where we have to make that decision. Our family shouldn't have to be away from each other for such long periods of time. Why can't things just go back to being simple and lazy, you know, like in the days before cancer?

Use Those Feet

2011-04-29T20:43:00.000-04:00

In the scheme of living at the hospital, today could be filed under good days. Averi didn't need oxygen last night, her ANC finally started going up (to 12, but up none the less), and her orthodics came today!

Here's the background on Averi's feet...she doesn't know she can use them. When you try to stand her up she pulls her legs up. If she ever does straighten her legs, they are overextended because she is mad, which also doesn't use any muscle. You can't learn to walk if u refuse to stand.

After some encouragement from a friend and DS mom, I decided to push the issue of getting orthodics. The catch? They don't usually prescribe orthodics until a child is standing and cruising. I convinced her inpatient PT (who has worked with them but never prescribed them) that orthodics would help Averi be more aware of her feet, give her something to push with when trying to crawl, and help give support to her almost nonexistent little ankles.

It worked. She made the call and worked out a way for the man who makes them to come to the hospital for the fitting. After several weeks of being in and out of the hospital for illnesses, we finally started this cycle and he came last Friday to measure her ankles. And today, they finally arrived, all cute and tiny!

Orthodics have to be worn with shoes, which is funny because Averi's feet have never been big enough for even a size 1. With the orthodics on, however, she fits snuggly into a size 3. Looks like we are going shoe shopping.

On Again Off Again

2011-04-28T21:33:00.043-04:00

Averi has recently started an "on again, off again" relationship and I don't know if I approve. I'm sorry Averi, but the oxygen has got to go.

Ever since her bout with what the doctors are calling bronchiolitis, she has been needing oxygen while she's asleep. She's totally fine during the day, and as of today doesn't even have to wear the pulse-ox when she's awake. As soon as she falls asleep, the story changes, even during her naps. Her oxygen levels just sit right around 88 until the nurse finally puts her on a teeny, tiny amount of oxygen.

Occasionally she doesn't need it, but just when my hope get up that she's fine, the oxygen goes back on. Her poor little face is so torn up and scabbed from taking the oxygen stickers off and then having to put new ones on. Like I said, this relationship is no good at all.

On a super exciting note, Averi did something new today during Speech Therapy...she tried to say a word. The ST was playing with a ball and saying and signing it and out of the blue Averi made a "buh" sound. She even repeated it at the end of the session when the ST said bye. The rest of the time she just moved her mouth and whispered inaudible sounds.

She has never tried to say consonant sounds before so this is a really big step for her. Lately she has become a lot more vocal and has started making several new sounds, not that they are letter sounds but she is definitely exploring her abilities.

It's funny because I had just finished asking the ST if there was anything different I needed to do to help Averi start saying words instead of signing them. I have tried to get her to say mama, naturally, and all she does is sign it with no effort to vocalize. The ST said that I didn't need to do anything different and that Averi would figure it out on her own. Apparently she was right. :)

Get into Sit

2011-04-26T21:09:00.000-04:00

I put Averi down for her nap yesterday, walked across the room, and turned around to find her sitting up in her bed. Knowing better than to think she did it all by herself, I reclined her bed (it was elevated pretty high in hopes of helping with her breathing) and laid her back down. Again I turned to see her sitting up.

After repeating this a few times, I stood beside her crib and watched her. Being the sneaky/lazy girl that she is, she grabbed the railing and used it to pull herself up. I tried laying her down further away from the railing with no prevail and finally resorted to having the massage therapist come in and massage her to sleep.

Today was a little bit different. I put Averi down for her nap and left for about 30 minutes to give her time to fall asleep. When I returned she was sitting up, scooted down to the bottom of the crib, and playing with her music star. This time when I put her back down she sat up without the help of her railing! I couldn't believe it.

As happy as I am that she has finally learned to get into sit all be herself, I am a little concerned about her future nap times. :) We will be working some more on her getting back out of sit skills.

I suppose that if she couldn't learn to crawl by her birthday (darn croup and crazy virus got in the way of my time line) then this is an awesome milestone to replace it! Go Averi!

Hair Today, Gone Tomorrow

2011-04-25T23:34:00.000-04:00

Lately the nurses have been commenting on how quickly Averi's hair has grown back in. I intended to buzz it again when we went home after cycle 4 because it was still thin and wispy but it just started growing all of a sudden. Not only is it growing, but it's coming in even and thick. I've even started day dreaming about pigtails.

This was her noggin just 2 days ago. (She was loving the new slinky and kept using it to accidentally pull the cannula out of her nose.)

And this is what I pulled off her noggin today after finding stray hairs all over her bed and clothes.

Apparently this round doesn't make her as sick but it does make her bald again. Hair buzzing pictures soon to follow...

Easter in a Tomb

2011-04-24T22:58:00.036-04:00

In true Easter tradition, we dyed eggs last night. Averi felt well enough to help out a little and color on the eggs with a crayon. Try to tell me she doesn't look like a hillbilly in this photo.

Dan started his Easter morning by cleaning up a poop covered Averi. Once she was all clean, the nurse accidentally pulled out Averi's G-Tube, soaking her in feed and warranting another clean up. Mmmm!

Averi is finally starting to feel a little bit better. Her temperature has dropped enough to be normal while on tylenol (fyi: immunodeficient kids can't have motrin, so tylenol is all we've got). They took her off the oxygen and IV fluids and even started half volume tube feeds. They had stopped all food intake with concern that she might puke and aspirate on it, adding more fluid to the buildup in her lungs.

After getting platelets just a few days ago, she had to get them again today. Apparently having a fever burns off platelets quickly so they gave her a high dose this time. Hopefully it helps her little body feel better tomorrow.

Averi can't even leave her room right now so it seemed silly to dress her up for Easter, but I did it anyways - just for the pictures.

Happy Easter!

Exhausted

2011-04-21T23:56:00.038-04:00

Last night Averi's nurse had a wonderful idea (I love when that happens, even if it is rare). She told me about a tylenol they have called T3, with added codeine. Codeine is a pain reliever, helps treat coughing, and can be given to little ones. Who knew?

It has made a world of difference. The coughing has diminished greatly and the sleeping side effect has helped Averi make up for last night's lost sleep. She literally slept all day long, except for maybe 2 hours total when she opened her glossed over eyes. One time I sat her up and turned around to find her laying on top of herself.

Unfortunately, she has managed to get even worse. Even with the T3 being administered around the clock, she's had temperatures of over 103. She has started retracting her ribs and flaring her nostrils in an effort to breath better and is getting albuteral aerosols every four hours to help with her wheezing.

When the night nurse took over, she suggested finding out what Averi's oxygen levels were. When the moniter turned on, it read 72%. We both thought it wasn't picking up correctly and she readjusted it. Nope, the 72 was accurate and she immediately hooked Averi up to oxygen. Then radiology came to the room to x-ray her lungs and make sure she doesn't have any fluid building up.

For a moment, I thought we were going to be taking another trip down to the PICU. Things have calmed down a little though, and I think Averi is breathing better now that she has some added help. I really hope this doesn't last long, the poor thing needs a break.

But I'd Do it at Home

2011-04-20T22:11:00.001-04:00

Well the coughing hasn't stopped, but it has gotten worse. Averi keeps coughing so hard that she gags and pukes. The coughing is really tight and dry so I had the nurse give her a saline aerosol last night to help wet her throat and lungs.

After puking in the middle of the night, Averi got some zofran to help with the nausea. Then it started coming out the other end and I changed a nice big diaper. While changing her diaper, I noticed a strange rash on her legs. I looked her over and found raised, scabbed over bumps all over her arms and legs. The resident assured me that it didn't look like an allergic reaction and said that it would either get better or worse. Hmmm.

By this morning Averi was puking again. When I asked for more zofran it was denied by the doctors with an explanation that the puking was just coughing induced. And when I asked what they were doing to treat the coughing they said nothing because she is too young for cough medicines.

What drives me crazy about hospital life is when I'm not allowed to do something that I would have already done if I were at home. Why do the doctors tell me to set up a humidifier at home but refuse to give my daughter a saline aerosol while she's breathing the super dry air from the hospital filtration system? Why can't I give her zofran when I have a whole bottle of it at home? We are on a chemo floor, I don't think there is a shortage of zofran.

I kid you not, I spent the entire morning climbing the ladder of authority until the attending doctor finally approved the zofran. And guess what? She stopped puking! Yes the puking was coughing induced but she was nauseous on top of that because she just finished getting chemo for 7 straight days. Give her a break.

(They had an egg hunt on the floor but Averi didn't feel up to going. When they brought her some treats, we tried them on. This picture perfectly captures how she feels today!)

Just as I thought things were starting to calm down, Averi started feeling warm. A temperature of 101 meant taking cultures, starting antibiotics, and finally giving her some tylenol. I don't think things are going to calm down any time soon.

You Don't Need That

2011-04-19T22:44:00.029-04:00

Averi has finally finished the last day of her week long stent of chemo. Being hooked up to an IV for that long was not easy. Several times we had to roll Averi repeatedly to get the tube untwisted. Oddly enough, when the nurse took the chemo down it was at least 30 minutes later before I realized that I didn't need to roll the IV pole around the room with me when I was holding Averi. Opps!

During therapy today the OT was trying to get Averi to put large puzzle pieces in the right spot. When I told her she had picked up the cat I signed it to her - and she signed it back. I have been working on that one for a while and she's never made any effort to repeat it. I guess it was just building up until she could perfect it and wow us with her skills.

Since Averi's chemo is done, it is starting to kick in, and that means low blood counts. Her hemoglobin was really low today so they gave her some red blood cells, and these weren't just any red blood cells, these were grandma's.

Along with the low counts comes the nausea. I was really hoping that she wouldn't get sick this time since the dosage was smaller but that doesn't seem to be the case. She has been coughing over the last few nights and today she coughed so hard she threw up. I think the coughing and nausea are not a good combination.

Squirted

2011-04-17T23:10:00.017-04:00

Dan woke up this morning to find Averi, once again, with her Mickey button in her hand instead of her stomach. She doesn't do this at home and I'm convinced that she just gets bored at the hospital and finds ways to occupy her time. At least it was in the morning when her stomach is empty.

When Dan told me about it I informed him that we need to be really careful with her tube for the next few days since the hole has been stretched out. I should have been talking to myself. After feeding her an entire jar of sweet potatoes, I picked her up to put her back in bed. While setting her down facing me, arms length away, her button popped out again, squirting my whole front side with orange mush.

It was an ambush. I was totally set up. ;) I sat her down, covered her hole, and stood there for several minutes waiting for someone to show up and help me. I couldn't reach the call button and I couldn't let go of her stomach. Luckily, the PCA showed up shortly to check on us and helped me out.

If something crazy isn't going on, you must not be in Averi's room!

Fruit Snacks

2011-04-14T21:55:00.037-04:00

Cycle 5 is moving along as planned. The chemo that she gets for the first three days is now done, along with the annoying 15 minute blood pressure checks.

This cycle has really knocked her out. She has reverted back to 2 naps a day and sometimes even sleeps in a little in the morning. I could get used to having more free time to get things done. She is still a little grumpier than usual and being weird about eating. I really hope it's just the remains of the steroid and not a bad habit she's gotten into.

I realized the other day that Averi doesn't have any allergies to fruit snacks so we cut some up and gave them to her. She was way more interested in playing with them than eating them, but it kept her busy regardless. After a while they got really sticky and we noticed her lip taking on new form with her nose. It was good for a giggle.

I also noticed this morning that Averi is growing another tooth. No, it's not the front one on the bottom...it's a molar behind her molar. I had to recheck because I thought I was seeing things. Why does she have the equipment for foods she can't eat?

I guess the biggest news today was that Averi pooped, after not doing so for 6 straight days. I think part of her not eating well is that her system is so backed up that it makes her uncomfortable. Yesterday I asked the massage therapist to come do some extra work on Averi's abdominals, and I think that helped (along with the milk of mag and colace she's been getting every day). I'm sure there is more to come. :)

Sisters

2011-04-13T17:22:00.000-04:00

I've been waiting almost 3 months for these, and we finally got them. Nothing beats the bond created by the love of a sister.

It's True

2011-04-12T21:10:00.030-04:00

We have finally started cycle 5 of chemotherapy! It's hard to believe, but true.

We started the day off in the Day Hospital, the "faster way to get chemo started" and then transfered to the floor around 4:00. Averi will be getting a constant drip of one chemo medicine for 7 straight days.

The other one, which is a new one, is given for an hour for the first three days. It can affect her blood pressure so that has to be checked every 15 minutes while the medicine is being given. As it turns out, they decided to start it during her nap time, so she will get to endure 5 blood pressure reads while trying to sleep. Yipee. :)

I know I will probably be less excited next week when/if she gets sick, but at least we are getting it behind us. Only one more treatment after this one!

Steroids are Bad

2011-04-11T21:59:00.038-04:00

It hasn't been Averi's best week. Apparently steroids do some crazy things to people. She's been having mood swings worse than a menopausal woman.

She has been extremely fussy, grumpy, and inconsolable. She wants to be held and then wants to be put down and then wants to be held. We have no idea how to console her because she has no idea what she wants.

Eating has gone down the drain. Seeing us get food ready makes her happy and then we try to give her a bite and she freaks out before the food even touches her lips. Then a tantrum breaks out and then she's eating and then she's not.

(Kaili sat on the floor with Averi last night and read her several books. She even let Averi turn the pages. It was super cute!)

Per doctors orders, we slowly weaned her off the steroid until Saturday and then went to the clinic today for blood work. She has made great improvements even from yesterday. Hopefully we will never have to use steroids in that high of a dose ever again (I probably just jinxed myself).

I was adamant about staying at the clinic until her results came back so that we would know for sure what the game plan was and someone wouldn't forget to call us again. After a couple hours the nurse told me that Averi's ANC was was over 4000 and she would check with the doctor to see if we needed to do anything else before we left.

Just as I was sending a text announcing the great news, she returned and said to wait because the doctor was deciding if the ANC was due to steroids. I was so annoyed. I even specifically asked before we were discharged to make sure this wouldn't happen.

Luckily, they decided that 4000 was high enough that even if the steroid was affecting it, it wasn't enough for it be below 1000 without it. Then they scheduled her to be admitted tomorrow! It was a close one, but we prevailed. :)

Not Yet

2011-04-06T21:30:00.002-04:00

We have now been admitted and discharged 4 times since we left the hospital at the end of cycle 4. I am beginning to doubt that we will ever start cycle 5. Yesterday during rounds the doctors told me that they were going to keep Averi until she was over the croup and then just start her on the next cycle today. The funny thing is that I believed them.

Today they changed their tune. I was informed that the steroid she is on to help with her breathing can also affect her blood counts, making them appear higher than they really are. With this knowledge, they don't know if her counts are up because her bone marrow has truly recovered or if it is just a false positive. Great.

Then they announced that instead of weaning her off the steroid by today (it was a really high dose) they are going to do it more slowly while we are at home, all the way until Sunday, and we could come back in on Monday for blood counts.

That's when I had to explain to them that there was no point in coming in Monday if I had just given her steroids the day before, because they would just tell me again that it was a false reading. I convinced them to wean it through Saturday and then found her primary doctor to make sure that we can still start chemo Tuesday if Monday's reading is above 1000.

No more games for us...and another week at home.

P.S. Sorry I haven't taken any pictures lately, Averi has looked really pathetic.

Syke!

2011-04-04T22:24:00.003-04:00

So guess what happened last night...a repeat of Friday night. Averi came home yesterday acting completely normal and breathing just fine. We even went for a family walk and enjoyed the almost spring weather. Once we put her to bed, however, it was all down hill and no open window, humidifier, or upright position could stop her ribs from retracting.

She was already scheduled for a clinic appointment early this morning to have her blood counts checked so I figured I wouldn't worry too much since she could get another breathing treatment while we were there. Silly me.

When we arrived I told the receptionist that we needed to see a doctor. She told me to let the lady know that takes vitals. So we sat and waited to be called back, and then waited some more while Averi continued to sound like Darth Vader.

A nurse walked by, heard Averi, and immediately took action. She sent us straight to the back where they set up an aerosol breathing treatment and called for the doctor. He came back and informed me that she needed an epi breathing treatment (duh), which they don't have, and sent us to...the ED.

So we spent yet another day hanging out in the ED, and did I mention that Kaili was with us since I thought it was going to be a quick clinic visit? She was given another dose of steroid but no epi because by then she had worn herself out and fallen asleep sitting upright on my shoulder, which calmed her breathing.

The ED doctor explained that he thought there might be something obstructing her breathing, since she wasn't getting any better and she's had a previous throat surgery, and sent for ENT. ENT decided to do a bedside scope which involved me holding Averi against my chest while he shoved a long tube down her throat. This greatly improved her attitude.

He didn't see anything wrong but explained that this scope only goes down to the top of her voice box. Apparently when she was last scoped in October to make sure that her laryngeal cleft repair had healed correctly, they had noted some narrowing of the tubes just below her voice box. He was concerned that this narrowing had swollen shut, preventing any air to pass through, and that it might need to be expanded back open. So we packed up and headed to the OR.

In the OR, they were able to scope all the way down to her lungs and thankfully didn't find any obstructions but did see a lot of swelling and inflammation. They suggested that she be placed on a high dose of steroid for 24 hours and she was admitted to the floor on oxygen.

I have to admit, it wasn't the day I had envisioned when I packed a few toys and no food for my four year old. Thankfully, I think they are taking us more seriously and we will be here a couple nights before they try to send us home again with a baby who can't breathe.

Discouraged

2011-04-03T22:48:00.057-04:00

Today was not the day I once envisioned, not even close. It marks exactly 6 months from the first day Averi was admitted for chemotherapy on October 3.

Back then we were naive enough to believe that her treatment plan of six 28 day cycles was a promise. I had every hope that she would be walking out of the hospital right about now, cancer free.

Back then we looked at 6 months and thought about how hard we thought it would be and decided half a year was doable. Now that is just a dream.

So where is Averi on the day that marks the supposed end of her run with chemo? Sitting in a hospital room, hooked up to an oxygen tank, with another 2 treatments (and at least 2 months) left to endure.

No one is ever prepared for the news that a loved one has cancer, but they are even less prepared for how their future will be changed from that point on. You lose all control of reality and the ability to make decisions or plan anything. You just hang in limbo until a stranger that you have trusted with your loved one's life declares that you are free to go.

It probably also doesn't help that it's my birthday and I only got to spend a few hours of it with all four of us together. Averi was discharged around 2 today when she proved that she could keep her O2 close to 100 without the added oxygen. Why they didn't just keep her and start the next round of chemo (her ANC was 1102) is beyond me. I'm just so anxious to get this '6 months' over and done with.

(After all that discouragement, here is a cute pic of the girls hanging out on Friday before the coughing began.)

Croup Sucks

2011-04-02T22:14:00.080-04:00

Right before we went to bed last night, after a completely normal and uneventful day, Averi woke up coughing. I went in to check on her and knew the minute I heard that dry, barking cough that it was croup. She's had it seriously 4 or 5 times before, but not any this winter and I was hopeful that she had outgrown it. I was wrong.

There is no cure for croup, just ways to treat the symptoms, and I could list them all off for you without even thinking about it. So I set up the humidifier in her room and went to bed.

One-thirty must be the magic hour (remember last weekend when she started puking?) because she woke up much, much worse. Dan got the baby swing back out, which is great for soothing a sick baby and keeping them upright, and we opened the window to let in some cold air. After holding her for over an hour, she didn't seem to be any better. Her throat and ribs were sucking in with every breath, along with a very loud, audible gasping.

My goal was just to get her calmed down enough that she could get back to sleep. Croup is always worse at night and I knew that if I could just soothe her until morning she would be alright. No relief came. When she still sounded just as bad at 9:30 this morning, I packed her up and left for the hospital.

I hate how much money this stupid hospital gets from us. Thinking I could be sneaky, I took her to the Urgent Care instead of the Emergency Department, since it has a much lower copay.

As the nurse walked over to take us back, Averi threw up all over herself. The nurse and I quickly tried to get her unbuckled from her car seat so that she wouldn't choke. The nurse was faster than me and scoped Averi up with just enough force to unplug Averi's feeding tube (probably because babies aren't usually attached to tubes by their stomach). Then we had fluid coming out of two holes, all over Averi's only outfit and blankets.

Once we got things settled down a little, the nurse checked Averi's oxygen level. It was a whooping 83%. In case you are wondering, that's supposed to be 100%. They immediately gave her a breathing treatment of racemic epinephrine (epi) along with some oxygen. Once her levels were up to 93 (on oxygen) she was transfered to the ED. I asked the Urgent Care Doctor and he told me not to come back, ever - apparently the ED is the place for us.

Once we got to the ED, Averi was given a steroid to help with the swelling in her throat. Then she had to be observed for 2-4 hours to make sure that she didn't rebound after the breathing treatment wore off. They ended up having to give her another epi treatment and finally admitted her to the floor on oxygen around 5:00.

I hope we didn't do any damage keeping her at home last night with her oxygen levels so low. Croup sucks, but she's never needed oxygen or repeat breathing treatments before so I assumed she would be fine. Needless to say, we are spending the night at the hospital tonight.

Awesome News

2011-03-31T21:07:00.041-04:00

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...

Even Lower

2011-03-30T20:49:00.020-04:00

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.)

Go Home

2011-03-28T19:30:00.048-04:00

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.)

Nervous

2011-03-27T22:10:00.048-04:00

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.

Whisper

2011-03-25T21:57:00.008-04:00

Averi has a secret to tell you...

She can whisper!

Walmart?

2011-03-24T21:35:00.037-04:00

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.

Mobile!

2011-03-23T21:16:00.001-04:00

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. :)

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!

Thermometer for Dinosaurs

2011-03-20T22:45:00.036-04:00

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.

No Rest for the Weary

2011-03-18T22:33:00.078-04:00

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

Done with Cycle 4

2011-03-16T23:20:00.038-04:00

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.

Surprise

2011-03-13T20:15:00.001-04:00

Averi would like to share her surprised face with you:

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. :)

I Need a Hole to Crawl In

2011-03-11T23:14:00.052-05:00

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.

In Your Face

2011-03-09T22:50:00.068-05:00

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!"

A Formula Solution?

2011-03-08T22:38:00.106-05:00

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!!!

Mickey Madness

2011-03-07T22:25:00.024-05:00

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.

Roll Through

2011-03-04T21:56:00.071-05:00

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.)

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...

Not an Outlier

2011-03-01T14:12:00.001-05:00

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.

Daddy's Blood

2011-02-27T22:39:00.023-05:00

As expected, Averi's blood counts are dropping. Luckily, Dan was able to go donate blood this week, which meant Averi was able to get it today when her hemoglobin got too low.

(Dan's bag 'o blood.)

It totally amazes me that someone can take something out of Dan's body, with no harm to him, and pump it into Averi's body to sustain her life. Of course, if I think about it too long, it starts getting gross knowing that there is a bag of blood hanging on her pole.

(Note the red tube hanging on the crib rail.)

There was one puking episode today, but only because Dan forgot to tell my sister-in-law, Cherish, to cut Averi's feeds in half. It's proof that my half volume theory works but really crappy for Cherish who was watching Averi so Dan and I could go to church together.

It Worked!

2011-02-26T23:18:00.046-05:00

All the little tricks we've slowly been figuring out have finally come together to form a solution. The vomiting has stopped for the moment. She's on IV fluids so she doesn't dehydrate (again), she's getting scheduled zofran around the clock and an oral dose of phenergan one hour before each meal, and her formula intake has been cut in half.

Honestly, I think it was cutting her feeds in half that finally tipped the scales. I don't know why it was so hard for the doctors to understand that we didn't need to keep pumping food into her stomach just because she has a G-tube. I'm so glad it finally worked.

Luckily for Dan, she hasn't puked once since he took over last night. Maybe he'll be around for something good for a change - I think he deserves it. :)

The only medication that changed today was taking Averi off the mineral oil that was just prescribed yesterday for her constipation (on top of milk of magnesia and colace). Her doctor today was pretty upset that someone had given her mineral oil while she was puking. Apparently aspirating on the oil would send her straight to the PICU on a vent. I think we're okay if she doesn't get it.

The only other exciting thing that happened last night was when I was firmly told that they are strictly enforcing the no air mattress policy. Don't worry though, they are going to give me an egg carton to put on the couch so it will be as comfortable as possible. I'm trying to be optimistic and grateful that we at least got 5 months with the air mattress, but I don't think it's working very well. The good news? They told me on a Friday so Dan was the first one who had to deal with the crappy couch. :)

Give Her the IV

2011-02-25T21:34:00.001-05:00

I'd say I jinxed myself, but I knew it was coming. Averi woke up puking around 2:30 this morning. When I asked the nurse to give her some zofran, she said she had just had some recently and couldn't give her any more until 7:00. So I asked for some phenergan.

By the time the nurse showed up with the meds an hour later, Averi had puked 5 more times. Luckily, she got the IV phenergan, which they wouldn't give her last month, and she slept through the rest of the night and woke up acting happy. I was really excited that they had known how sick she gets and just given her the IV (she kept throwing up the oral dose last time) and that it had worked so well. My joy didn't last for long.

The NP arrived in my room to inform me that no one under 2 is allowed to have IV phenergan, because not enough research has been done on it, and that pharmacy is livid. But she got it, and it worked, and she'll be 2 in two months (crazy, I know). There was no use. After hours of the NP talking to pharmacy, they finally agreed to give her oral doses only as needed. By then Averi was puking again.

Luckily, the doctors were finally on board with me wanting to get ahead of the puking this time (it only took 4 cycles) and they agreed to only give her half the volume of formula she normally gets over a longer period of time. Here's crossing my fingers that zofran, phenergan, and not quickly pumping her stomach to max fill will be the solution to a not-so-pukey baby.

The Second Half Begins

2011-02-23T20:20:00.000-05:00

We came back in to the Day Hospital on Monday to start Cycle 4 of chemo. I had to twist some arms, but we got one of the isolation rooms again (they are much bigger and have an anteroom which is great for keeping noise out).

The good news is that cycle 3 was only a few days over the '28 day' schedule, so maybe cycle 4 will go smoothly as well. Either way, hopefully I will do a little bit better with coping. :) I was also able to find and confiscate the little car for Averi to ride in- it's the little things that keep us happy.

I don't know if the toll chemo pays on your body builds up, but this cycle is really wiping Averi out. She is sleeping for hours at a time and isn't really interested in doing much. She looks exhausted all the time. She's also really constipated, which isn't a new problem but is kind of weird since it is the opposite of the expected side effects.

I hope she's not feeling down for too long, which is probably a silly thing to say since the puking seems to start sooner with each cycle. My brain has yet to figure out why we must make her sicker to make her better, but I pray everyday that it works.

Finger Prick

2011-02-17T17:06:00.038-05:00

It has been so nice being home for the week and the weather has even been a little bit warmer (not that I'd personally know since I never leave the hospital room :) ). Even though Averi's counts were so high on Monday, the doctor told us to plan on taking a week off but to still have her blood work done today before an appointment was made to go back in next Monday.

Since I didn't want to drive all the way to the hospital, I called the children's lab closer to our house to make sure that they were open. They informed me that no one at the lab is allowed to access her port and that I would have to take her to the lab at the hospital. Luckily I called them as well because they have the same problem.

It turns out I would have to take her to the Clinic (and pay for an entire visit) if I wanted her blood taken from her port. What's even more frustrating is that I've seen it done enough times I could just do it myself, but that is totally not allowed.

Long story short, we headed to the lab to use a finger stick to fill 2 vials with blood. I held her down in my lap and prepared for the worst while the tech poked her finger. She didn't even cry, not one tear. The only time she got fussy was when I wouldn't let her grab the bloody gauze sitting on the table next to her. I swear this hospital life has done something to her phsychy. Not that I'm complaining, but what one year old doesn't cry when you poke her with a needle?

The doctor called later to let me know that her ANC was 7,052! We have an appointment to start cycle 4 on Monday morning.

Home for V-Day

2011-02-14T21:54:00.075-05:00

Averi's counts have been all over the place during this treatment...except for 0. Last week her ANC hung around 40 for a while, getting my hopes up that she had finally hit bottom, and then on Friday it dropped down to 32, the lowest it's been this cycle. It's so frustrating knowing that she will stay at the bottom for a while but not knowing if she has even gotten that far.

When her counts went up to 154 on Saturday I didn't think anything of it since they've been all over the place, so it was a nice surprise when they jumped up to 450 on Sunday. The doctors had said that two consecutive days over 200 would be grounds to go home so we crossed our fingers that they wouldn't drop too much over night.

This morning her ANC was a whopping 1,620! That's high enough to start the next cycle so it was definitely high enough to go home for a few days...and then Averi woke up with a runny nose. I seriously debated about not saying anything but knew it wasn't worth taking her home if she just came back the next day with a fever. We were in luck and they discharged her, on Valentine's Day. :)

(Last night we were playing a game and Averi scooted over behind Kaili so she could play with her hair. Kaili was an awesome big sister and let Averi have her fun. It was so sweet.)

Of course good news around here never seems to last for long. As the doctor walked out, the charge nurse walked in to inform me that we can no longer use our air mattress. Apparently it is a violation of the fire code and would be in the way if there were an emergency. Um, I'm pretty sure that if Averi were in a state of emergency I would be awake and totally capable of propping the mattress against the wall. Not to mention we've been using it for over 4 months now, the couches here suck, and we live here for a month at a time. I might be a little bitter about the whole thing and I'm pretty sure the mattress is coming back with us next week. :)

Runny noses and future bad sleep aside, I couldn't be more excited! After what seems like forever, but is really only 134 days, we are officially 'half way' done. (You have no idea how long I've been waiting to say those words.) Three of the six treatments are behind us. Hopefully the last three won't take quite as long as the first ones did.

Happy Valentine's Day!!!

Pop Goes the Mickey

2011-02-12T22:57:00.001-05:00

Poor Dan always ends up having to deal with something crazy when he is at the hospital on the weekends. Today was no exception...

Right before dinner, for some unexplained reason, the balloon that holds Averi's Mickey button in place popped. She has had a Mickey for quite some time now and we have never had this happen before.

She was just sitting on her bed playing when Dan looked over and saw her holding the Mickey. He thought she had pulled it out again, but upon closer inspection realized that it had popped and fallen out all on it's own. My only guess is that she ripped a minuscule hole in it when she was chewing on it the other day, but no one really knows.

Dan immediately plugged the hole with his finger, to keep her stomach contents from spilling out, and called for the nurse. Since they don't keep GI supplies on the cancer floor, a new Mickey had to be ordered. When the order finally arrived it wasn't even a Mickey button, so another order had to be made.

An hour and a half later, the right Mickey finally arrived. Of course by then Averi was extremely hungry and the hole in her stomach had closed some so Dan had to really work to get the new Mickey back in, resulting in lots of screaming and crying. Really frustrating? Yes. Totally random? Yes, but then again, Dan was staying there. :)

At My Limits

2011-02-11T22:09:00.052-05:00

Two and a half weeks, that is my breaking point! Apparently living in the hospital slowly wears on me until my brain eventually turns to mush at 2 1/2 weeks. To say this week was hard would be an understatement. I literally stopped functioning and turned my brain off because I was so overwhelmed with responsibilities.

That being said, I am sitting here 3 weeks later (after getting lots of requests and feeling much better emotionally) trying to get back on track, remember everything that has happened, and catch all of you up. We'll see how it goes...

Averi's temperature continued to be low all through the week, which didn't sit well with the doctors. Since she didn't show any other signs of cold sepsis (low blood pressure, irritability, cold extremities, etc.) I asked why they were so up tight about it. That's when someone finally explained to me that there are other more likely things that could also be causing a low temperature, like a fungal infection, that wouldn't show up on the blood cultures. The only problem with that theory is that she would still be showing other symptoms, like cold sweats and being achy.

Being frustrated with her low temperatures, the doctors finally put in an order to take all of her temperatures orally. Yah, that went over really well. Have you ever tried to take an oral temperature on a baby? She literally screamed until tears rolled down her cheeks while the PCA tried to hold her mouth shut. Needless to say, the resulting temp was not accurate.

The therapy sessions were even lame this week because many of the therapists were out sick. This was made up for, a little bit, when Early Intervention brought finger paint. I didn't know how Averi would do since some kiddos with DS have sensory issues, but she loved it. I think she might have loved it too much because she kept trying to lick her fingers and we had to cut the painting short. At least she was able to make a few really cute pictures and hand prints first.

Quick Update

2011-02-07T21:34:00.005-05:00

I realized after I posted last night that I hadn't updated on the whole 'cold sepsis' scare. Other than having a really low temperature that one night, Averi has been just fine. The final 48 hour results came back last night and they were negative (didn't grow anything) so she got her last dose of antibiotic this morning. I explained to her that there will be no funny business tonight as the antibiotics wear off. :)

(The other day I turned around to find Averi banging her drumsticks together. The catch? One of them was hanging out of her mouth. When I started laughing and got the camera, she liked the reaction and continued doing it. It looks painful.)

I have also accepted that we will not be going home today, as was once mentioned (not that I really believed it), because Averi's ANC has a mind of it's own. Over the weekend it went from 320, to 170, to 120, to a whooping 70 today. It seems to be hovering around the 100 area so I don't know if it will ever finally go all the way down to 0 (I learned that that is called 'nater,' as in "she never natered"). Either way, she won't get to go home until the counts start trending upward.

The rest of her blood is doing really well. Her hemoglobin (red blood) is normal and her platelet count seems to double every day. This is the best news to me since her platelets are what got us into this mess in the first place. Now if we could just get her white blood cells to get a move on.

Double Life

2011-02-06T22:32:00.000-05:00

Dan's mom is in town and stayed with Averi last night so that Dan and I could go on a date. As we were driving home with Kaili in the backseat I leaned back and thought how nice it was to be out with the whole family. It took a minute or two before I realized that the three of us were not the whole family.

I felt like such a horrible mother. How could I forget my own child? I only have 2, it's not like I have too many to keep track of. It was really bothering me, so I spent the rest of the ride thinking it through.

I decided that I live a double life. I have one life where I sleep on an air mattress that has to be put away everyday and spend my days caring for my sweet baby girl. My days are filled with feeding, changing diapers, therapy, naps, occasional walks around the halls, IV's, feeding tubes, medicine, and medical personnel. This life sometimes allows me to take my baby home, where we stay until we return to the hospital. Averi never goes out, needs all of her toys cleaned, and is a good reason not to have people over.

My other weekend life is completely different. I spend it sleeping on a queen bed all alone while I wait for my four year old to come wake me. It consists of laundry, cleaning, playing pretend, paying bills, going to church, and getting caught up on 'real' life.

Neither one of these lives is normal or ideal. So the one time I'm actually allowed to go out into the world, my body refuses to acknowledge it as part of my life. In fact, I'm pretty sure that there are people who see our broken family coming to church and don't even know that we have an angel that is part of our lives. Does it matter? No. Does it hurt? Yes, because even I am starting to disassociate Averi with our family.

It makes me realize that I took so many things for granted. A simple trip to the grocery store with my girls. Getting to play with both girls, on the carpet, with no time restraints. Spending the night as a family, all 4 of us, and not worrying who will interrupt. Making dinner and entertaining the kids at the same time. It goes on and on.

I'm starting to ramble, but I guess my point is that I can't wait to have my life back, my life that consists of my husband and my two girls together on a regular basis. I hate feeling like Averi is only allowed to be in part of my life, and Kaili in the other, especially when my family IS my life.

Cold Sepsis

2011-02-04T20:26:00.001-05:00

Leave it to Averi to teach us about another rare medical condition.

Last night, before I went to sleep, the nurse informed me that she was having a really hard time getting Averi's temperature. I figured it was just because she wasn't putting the tempa-dot in the right place or leaving it there long enough, and went to sleep thinking the digital thermometer she was holding would do the trick.

Thirty minutes later, she woke me up to tell me that Averi's temperature was 93.something and that she was going to draw blood cultures and start antibiotics. I must be dreaming, what!?

Apparently if sepsis occurs in an immunodeficient patient it can, but very rarely and usually in newborns, cause the body to have a very low temperature. The high fever is evidence of the body trying to fight off the infection and a body with no ability to fight does the opposite. Doesn't really make sense, I know.

Her blood pressure was fine but her legs and arms did feel cool to the touch. I started getting nervous when she woke up coughing and fussy because RSV is making it's rounds. Being Averi, however, she woke up happy as can be with a normal temperature - which is 96.8 for her.

Her fellow came by again this afternoon to let me know that Averi will not be going home today, which was funny because we both already knew that we have to wait for the 48 hour results of her blood cultures.

Averi's skin is a little more mottled than usual, she seems tired, and her blood pressure is just a little lower than it usually is. It might be nothing, which is exactly what I think it is, but it's enough to get the attention of her doctors and keep them on their toes. (I'm not gunna lie - sometimes I like to seem them squirm a little.)

Candid Camera

2011-02-04T00:22:00.000-05:00

When the doctors came in our room this afternoon and said, "We think Averi might get to go home tomorrow," I literally laughed out loud. Then I quickly searched the room to make sure I wasn't on a hidden camera show.

After realizing that they were serious, I immediately tuned out the fellow who was talking to me and looked at the attending, the 'make the final decisions' person. Apparently Averi's ANC counts have gone something like this: Sat - 360, Sun - 480, Tuesday - 90, today - 320. Not only did her counts go up but her platelets have gone up as well, which means her marrow is producing it on it's own. It's possible that she never got to 0 before starting to recover.

When I asked the doctor if the ANC always had to go down to 0, she replied that 'always' was a strong word. That's when I said, "So you're telling me that this is Averi and you have no idea what's she's doing?" The answer was yes. :)

Several hours later, Averi's fellow came to check on her and explain things a little better. They want to at least keep her over the weekend to make sure that her platelet increase continues and isn't due to the transfusion she received 2 days ago. They also want her ANC to come up some more, since that is what took so long to recover after the last treatment.

I am now feeling more confident in the 'go home' decision, and with some luck we just might get to go home at the beginning of next week!

Ever since the 'Mickey Breakfast' incident, Averi will not leave her Mickey alone. I keep finding her with her shirt pulled up and one hand twiddling her Mickey. I think she does it without even noticing, since she uses twiddling as a calming device, but why, after having it her entire life, has she decided to start doing it to her G-Tube?

I never leave the room and she still manages to pull off the gauze and unplug her tube. The nurses finally came up with a solution - wrap her entire torso with gauze so that she can't get to her tubes. This is what Averi thinks of it:

Don't be fooled by her bewildered face. It only took her a few hours to figure out how to pull it up a little so that she could twiddle her precious Mickey. She is one extremely smart, yet lazy girl!

High Fashion

2011-02-03T22:49:00.000-05:00

I was told recently that my posts have been a little critical lately (is it my fault that half of the medical staff at the hospital are idiots?). :) I am therefore dedicating this post to the silliness that fills our days and makes them bearable...and to high fashion.

I made new and improved name band bracelets, purple this time, since the pink ones had started collecting fuzz. I also made blue ones for the cute baby boy down the hall who is also in the hospital for weeks at a time doing count recovery. We pass in the hall and wave at each other and avoid touching anything germy.

My friend Jennifer made two new hospital gowns for Averi to sport. She puts so many details on them (velcro sleeves, crossing back, fancy accessories). I LOVE them! Thank You! (This is Averi's new camera face...not bad.)

I have decided to fill my time with projects while I am here to keep from going insane. Last week's project was making flower clips in every color imaginable and making cute hats to go with them. I've only gotton one hat done, but the clips are super cute!

'Lookin' like a Fool with your Pants on your Head' (Thank you American Idol.)

As much as I complain sometimes, life is only bearable if you learn to laugh at it...and that I can do. :)

Pajama Poser

2011-02-02T21:18:00.000-05:00

Here are Averi's Flashes of Hope pictures from December. She was admitted that day and I totally forgot about the pictures so she is wearing what she had on when I woke her up early and brought her to the hospital...her jammies. We got them back 2 weeks ago and I forgot to post them until now...shameful, I know.

I love how much her personality shines through. She makes us smile every day!

Idiot!

2011-02-01T12:35:00.000-05:00

On the first of every month the interns and medical students rotate what floor they work on. This was really sad news the first time it happened (back in November) because we really, really liked both the intern and med student who were assigned to Averi. None of the ones we've had since have measured up, but the med student that walked into our room this morning takes the cake!

Let me set the stage. Averi is asleep at 8:00am. The lights are off (after I turned them off because the night PCA keeps leaving the light on when she leaves the room...I'm not annoyed), the blinds are closed, and I am quietly sitting in a chair with the computer. The med student, we'll call her Idiot, walks in and announces who she is from across the room.

After whispering answers at her and having her loudly say, "What?!" I finally decided that she was not getting the hint to be quiet. The following conversation commenced:

Idiot: How is she feeling today? Is she feeling better?
Me: Fine. She's not throwing up any more, so that's an improvement at least.
Idiot: Is she eating alright? Does she have a G-Tube?
Me: Yes, she does and her appetite is fine.
Idiot: Does she use her G-Tube or does she just eat orally?
Me: She does both. (Why would she have a G-Tube if she didn't use it?)
Idiot: (Prepare yourself, this is the best part) Do you think she's ready to go home?
Me: Um...She can't, her ANC is still going down and then it has to come back up. (Her stupidity caught me by surprise. Had I known it was coming I would have responded with a "Yes, can we pack up and go home today?")
Idiot: Can I listen to her? (She then loudly pulls the side of the crib down.) Does she have a central line? (said loudly while still hovering over my sleeping baby) What side is it on?
Me: She has a broviac on her right side. (Why haven't you left yet?)
She did finally leave, but not before Averi was wide awake.

I now have a few questions of my own. Did you look at her file before you so loudly galloped into our room? Do you even know what kind of cancer Averi has if you don't know that we have to be here for several more weeks for count recovery? Do I think she is ready to go home? Seriously?

Do you have kids of your own? Do you not see that my baby is sleeping and you are waking her up? Is there no dignity? Maybe when I inform you about her entire medical history I should let you know that she has Down Syndrome, too.

I digress. By the time she left the room, I was laughing so hard I had to call Dan and repeat the entire conversation. It should be a very entertaining next 28 days!