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Sunday, February 27, 2011

Avery wasn't admitted on Friday like we had hoped. The plus is that we got a few more days at home to play instead of being locked in a hospital room all weekend. As a result of being denied admit on Friday, we were able to head over to Daddy's office and say hello to all of our Ryan family. Jeremy was of course MIA and they had to call him to get him back to the office. (he was on his way to bring us lunch at the hospital only we weren't there!) It was great to see everyone and Avery had a blast hanging out at daddy's desk.

Saturday we had a playdate with our BF Harper and Miss Daisy. It's been a while since we had seen him so it was great he was able to come play. Harper is only 6 months older than Avery and for once it finally feels like maybe she is catching up in size. We dwindled down to 10.0 kilos again over the last 2 weeks and that has been really disappointing, but we'll keep working at it. She won't be eating much over the next 2 weeks, but after that the gloves are off! She also hasn't been as interested in taking a bottle which means our go to calories are no longer as easily taken. So much for old people milk. In case anyone needs any Ensure Plus -- we have lots.

We'll try again tomorrow to get admitted for this last round of chemo. It's not surprising we didn't make counts last week - she had been hospitalized with some crazy bug the week before and then had surgery on Wednesday. The body doesn't do a lot of rebuilding when it's fighting infections and trauma. She was at 480 anc on Friday so we suspect tomorrow will bring us the 500anc that we are looking for. This week will go by considerably slower since we will spend the whole week in patient. Time seems to go quicker when part of the the 5 days is the weekend. But like the last 14 months -- we will survive this and it could be worse.

We are anxiously awaiting the arrival of spring and a change of scenery. I planted bulbs 2 falls ago that I haven't seen yet. This spring will be filled with discovery as our 2 year old starts to experience the outside world. I can't wait to show her the tulips growing and the pear trees flowering. But most importantly I can't wait to put her in her new swimsuit and plop her in a pool! Jeremy and I have been contemplating taking her to the Great Wolf Lodge so we can get her swimming now. She just loves the water in the tub so we think she will love the pool.

Jeremy and I are doing well. Going back to work has been a good distraction for me. Although my schedule changes all the time due to appointments, rehab and hospital's nice for me to have some control over something. As most of you are aware, I am a planner and not having control just about kills me. When I am at work I feel at least somewhat in control. Jeremy's work hasn't picked up quite yet due to the ever changing KC weather. Hopefully we are on the downhill slide into spring so the Ryan guys can get their stuff done!

I don't have any further details into our NY trip. At this point I am waiting to hear back from the Dr's at Memorial Sloan Kettering. Once we do, we can get some dates in place for her surgery in Memphis and a start date for the clinical trial. We are excited for this trial and really hope it will be the nail in the coffin so to speak of this awful monster.

Thursday, February 24, 2011

Hi Everyone
Just a quick update on Avery. She did get the Hickman removed and the port put in yesterday and the Surgery went great. She was in a little pain but is all over the place today. She didn't get to start her last round of chemo do to low ANC counts (only 370). The plan is to go back in Friday morning and try again. We are so excited about the port! She can be a little more kid like in the tube and this summer she can do some swimming with her friends. We will post again this weekend to update everyone on her last round. Thanks to everyone again!
Avery, Jenn, & Jeremy

Sunday, February 20, 2011

Almost There...

We had a pretty low key weekend - and some beautiful weather. Avery was so glad to be home and spent the weekend revisiting all her toys. I am dreading leaving on Wednesday morning again and having to pull her away from them all again. Today she managed to bang up her head pretty good, so Jeremy took her in for labs and ended up getting some platelets. The good news is that the rest of her counts were looking good and we are heading up again. This means we should be cleared for the Port placement and Chemo Round 6 -- the last round.

We are anxious to get this week over with and be done with the Chemo. We are ready to move on to something new and something that doesn't drain her so much. We had really hoped to be further along in our therapy, but with the snow, the unexpected fever, and now the last round, we haven't accomplished much. Our goal is to get her walking as soon as we can so she has a little more freedom.

Nana is coming for a visit in 2 weeks and we can't wait for that! Then after she leaves we will head down to Memphis for another set of scans and tests. Then after that we will go to New York to start our next clinical trial at Sloan Kettering Cancer Center. Avery will be participating in a Phase II study that takes mouse antibody that attaches itself to cancer cells and injects them with radioactive iodine. When the antibody attaches to the cells - it penetrates with the radioactive iodine, killing the cell. The hope is that this will find those lingering cells that the chemo hasn't killed and kill them. If we can successfully do this - Avery will go into remission. The Dr's didn't think this was an option for her last October. We knew better and have proven it. The prayers and well wishes are still needed, so keep them coming, but keep in mind - they've been working!


Thursday, February 17, 2011

Her Teeth again -- Of Course!

Well we finally managed to bust out of the hospital this afternoon after a very long week of isolation. Avery has somehow come down with some gram negative bug that caused her fevers and left her with a blood infection. Luckily the antibiotics she was on starting the moment we walked in the door should have cleared it up. We will continue to take antibiotics via her line for the next 7 days. This of course means we will learn how to use some sort of infusion pump at home and our next dose is due at 3am. Ugh. We've been told this should not interfere with next weeks surgery or chemo, but we'll see what happens.

The 3 of us are about done with the hospital stays and are looking forward to a few days at home. Next Wednesday is coming fast, but we know that this very well could be our last inpatient stay we'll suck it up and paste a smile on our faces and cherish that feeling of it being our last time. The next step of going to NY is going to come fast, but luckily does not require any inpatient stays or icky chemo. She has done so amazing - so incredibly amazing and as I sit here thinking about all the crappy times we've had to endure in the last 14 months- it strikes me that she's had it ten times worse and never complained. To fight this hard and to still be so strong, so brave and so happy - well it just puts our complaints about hospitals and a little lost sleep to shame. Jeremy and I will never be as incredible as Avery is - and boy are we proud to be her parents.

For those of you in Kansas --enjoy your warm weather weekend! For everyone in the North - well, you should think about moving to KC...hehehe.


Monday, February 14, 2011

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?


Sunday, February 6, 2011

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 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.


Wednesday, February 2, 2011

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!!