Another Holiday, another hospital stay

It's almost as if we should make reservations...I mean maybe if we reserve a good room ahead of time, we could spend St Patrick's Day in a good room with a tub and a window view! We've decided that the hospital is the place to be on each and every holiday, although it's not for their wonderful way of celebrating -- more for the humor it brings us each time we land in here.

Avery started running a fever on Sunday night, so once again we packed up the car and brought her in at 9pm. The usual routine ensued...lab draws, cultures, antibiotics, and tylenol. We added a chest x-ray to make sure she wasn't too backed up and found out she was very gassy - and therefore miserable. We spent the next 8 hours attempting to settle her back to sleep and ignore the nurses coming in and out. She woke up around 1am and was not happy so we asked for some gas drops...she woke up again a few more times in pain and then again at 4 she started to spike a fever again...more tylenol. Rough night for us all, especially when she decided she wanted to get up at 6:30am and Daddy had to get up with her while I left for work. We both loaded ourselves up on caffeine and slapped a smile on our faces, heading straight into the day. Role reversal for us both, as I found myself attempting to be nice to everyone and Jeremy tried to remember to ask the Dr's about all the tests and what if's. Tomorrow will be a little more normal - if you can call our life normal, as he goes to work and I log on from the hospital while entertaining a 2 year old.

Jeremy and I were able to sneak away for some Mommy & Daddy time on Saturday and that was a much needed break for us both. It's crazy to think that the last time we had really done that was for our anniversary in August. These last 6 months have really flown by, like they do every year with all the holidays, but this year seems so much quicker. Jeremy and I spoke to St Jude and the Dr's are recommending we take Avery to Sloan-Kettering in NY for a Phase II clinical trial when we finish our chemo here. This is most likely what we will end up doing, but it means more time away from each other. The good news is that the time is much shorter and 5-6 weeks in length as opposed to the 5-6 months we did this time last year. And - as much as we love St Jude -- NYC is way more fun! As we get more information and make more decisions I will let you all know...but for now -- this is the idea....

We are hoping to be discharged tomorrow night after her 48 hours are up, but we'll see. We return next week for her 6th and final ICE Chemo round and we are very excited to be closing this chapter of treatment. On Wednesday she will also be having surgery to remove her Hickman line and replace it with a port that is under the skin. This is a huge thing for her and some fun baths and pool time, but also for us as we say goodbye to the routine of changing the dressing every other day and flushing her lines each night. I can honestly say that I am over this process and ready for something new. The hospital refuses to give me a Nursing title so I am totally boycotting starting next Wednesday. I'm just saying...I mean really I think every cancer parent deserves an honorary degree of some sort - we know just as much about the important stuff as they do --we know the kid. That deserves something...right?

Jenn

Round 5 Complete

Avery finished round 5 with flying colors - of course. We don't expect any different from this absolutely amazing girl. She lost the rest of her hair this week and looks really different - surprising how a little fuzz in the front can make it seem like there is more there. Now I know how bald men feel. She seems to be feeling fine and ready to rock. She had a little bout with a UTI - but rather than give her more antibiotics and start the C Diff cycle again, we opted to wait it out as her bacteria wasn't as high as they normally would see and treat. Hopefully it clears itself up in the next few days.

We were very excited to have been invited to speak at the TKE convention this weekend on behalf of St Jude. We were asked to attend and represent the St Jude Family Community as the men of TKE are large supporters of the hospital. It was fun to see a huge group of the greek system all together like that - it has been a long time since Jeremy or I have been a part of that type of gathering. The men of TKE at Iowa State were there and we were able to connect with them and take some pictures. It was such an honor to be able to represent the families of St Jude and also give back in some small way to the place that has done amazing things for our family. We only hope that opportunities such as this will continue to be presented to us so we can help even more.

We start our new rehab this week and we are really excited. We decided since she seemed to have so much energy it was about time we got a little more aggressive with her walking progress. We will be taking her to a rehab center 2-3 times a week where they will work with her for an hour on strength building and walking exercises. Her new glasses arrived this week - still blue and round, but a little larger and a better fit for her growing face.

We were able to go to church today, which was great for all of us. We miss not being able to go when her counts are down and were happy that we were able to attend this week even though we won't be able to for the next few. Avery struggles in the kid room a bit -- wants to be held and whines a bit. It's been a long time since she was in a daycare setting and I think she has some anxiety about it now. We'll keep working on that one though because sharing toys and socializing is huge in a 2 year olds development - and boy we don't need that problem on top of all the others we have!

Jersey is finally back home today and we sure missed her for the last 2 weeks. It's amazing how much Avery loves that dog. Poor Jersey just wanted to cuddle up and sleep and Avery has been chasing her around all day. Just now I found chocolate in her hair...evidence of that the Cookie Monster managed to capture her at some point.

We will be on lockdown this week as she drops and tries to climb back up in counts. She hasn't had any transfusions this round as of yet, but we'll surely see at least one of each by the end of the week. Both Jeremy and I are back at work this week so Miss Sharon will be here playing with Avery, which just tickles them both.

We scheduled our Port placement for the 23rd of the month and will be admitted immediately following the surgery for her 6th and final round of the ICE Chemo regimen. After 3 weeks of recovery time we will then return to St Jude for more tests and to discuss our options moving forward. Our trip to St Jude is scheduled for the week of March 21.

Well we hope everyone enjoyed the game and the more importantly the commercials...Jeremy ordered some wings and plopped himself in his chair....as did Avery in hers. It's amazing how much like him she is...well minus the love of dolls, clothes, and books. Course now that I say that he is helping her put the dress back on the doll - scratch the doll.

Jenn

Blizzard of 2011

As the City prepared to shut down yesterday...Jeremy and I were packing up the car for round 5 of the ICE chemo. I can honestly say I was excited to be going in patient for the first time. What better place to be than in a hospital surrounded by medical personnel, a cafeteria with warm food, and lots of back up generators. I mean really -- we were in the best place possible.

Chemo yesterday and today were uneventful. Like a champ she powers through them and continues to play. Right now she is working hard on typing on the other computer like Mommy, who has been working as much as possible from the hospital room. We are back in one of the Bone Marrow Transplant rooms on 4 henson and it is extremely quiet back here. These are rooms used solely for those kiddos whose immune systems are even more fragile after chemo and they keep them isolated as much as possible. This is completely out of my comfort zone as I like the hustle and bustle and talking to other parents. Jeremy however, is in heaven. Ok, well maybe not heaven, but he likes it quiet.

I sure hope everyone is safe and warm today -- make sure you pack an emergency kit if have to travel - I'm sure the towing services are backed up big time and you'll be in for a wait if you need it! Luckily we have fostered out the dogs again and don't have to worry about them. Digging a path for Jersey to go potty on would have been really annoying to Jeremy after he shovels our driveway and the neighbors (they live in AZ). Drive Safe!!

Jenn