July 23, 2012

Today marks one year since the day of Ava's admission to the hospital.  I remember that day so clearly. Her future was uncertain and we were terrified of the road ahead.  I remember walking through the hospital with all of her things, pushing her in the stroller and being shown to our room.  For the following 3 nights Ava was given chemo and we watched as her little body was prepped for her bone marrow transplant. I think about that time now and I can't believe it has been one year. So much has happened since!  Ava has grown up and is turning into a beautiful little girl. She keeps us extremely busy and makes mommy very tired at the end of the day.  I have been wanting to do an entry for so long, but the longer I waited the harder it was to start. I felt that today would be a good day to just sit down and do it!
The last I wrote was in March. Since then she has had her monthly visits to Sinai, and a couple visits to Hopkins. Her one big visit to Hopkins was at the end of April when she got her port out!!  That was exciting, to have her free of that after all those months. Her blood is tested monthly and looks great... still moving in the right direction. Today she has her one year appointment with Hopkins. We will see Dr. Chen (who we haven't seen since December) and Ava is also scheduled for an EKG and some other tests that are standard for the one year appointment...today is a huge milestone :)

1 yr ago today, Ava moved into this room

I obviously have so much more to write, but will wait until my next entry in a couple days. The 27th will be 1 year post transplant!! I will get into more detail then about life at home with her and how the family is doing.

7 months post transplant!

Feb 27th was 7 months post transplant! Actually, the 6 month mark was a big milestone but I never got around to writing, so I will acknowledge the 7 month mark on here.  We had our last (sort of) visit to Hopkins 3 weeks ago and saw Dr. Chen. We thanked him and everyone else for all of their wonderful care throughout this ordeal, they were beyond amazing. We will return to Hopkins on Monday for another t-cells engraftment test, which by the way, the last results didn't drop much from the previous 30%, in fact it went up a teeny tiny bit. We were really hoping to see a significant drop in the percent, but that was not the case this past time. Dr. Chen wants to repeat the test and keep an eye on her levels. He's not too concerned at the moment, and says that there is always a chance of it dropping next time...I am so hoping for that.
Last week we had our first visit back to Sinai.  It was so great seeing Dr. Wiley and all the nurses! Ava was all over the place, walking and talking...they hadn't seen her since she was 6 months old!! She had her regular blood drawn and will go back in a month.  Basically, the T-cell test will always be done at Hopkins and her clinic visits will be at Sinai.  Both doctors will remain in touch and involved.
Besides all the waiting for appointments and tests, Ava is thriving in every way. She loves to keep me on my toes.  I do believe she is the most exhausting baby in the world.  She climbs, falls, jumps, pulls hair, bites (love bites Im sure), opens doors and cabinets (that are baby proofed), puts everything in her mouth, and throughout it all she remains so huggable, kissable, and lovable. On top of all that, she still doesn't sleep well. I am aware that it's mainly because of us...we started the Ferber method 10 times but don't follow through. We are just so tired.  Drew is away this weekend but we have made a pact...when he gets home, we are 100% sleep training this child!!!  No if's, and's, or but's!!
Sleep or no sleep, we are enjoying Ava so much. She has such an amazing personality and loves everyone. I love watching her take things in and learn...she is exceptional.
I have so much to update on but need to utilize my moments of quiet wisely. She went down a few hours ago and will probably be up before I finish this.
Some recent pics...

Ava update

I wanted to write an update to let everyone know what the latest is. Ava is doing great! We found out 2 weeks ago that her last t-cell engraftment result went from 51% to 30%!! This is fantastic news! It means that the majority of lymphocytes in her blood are Audrey's!  We will do the test one more time this coming Monday and if the results are still moving in the right direction, Hopkins will be breaking up with us. Seriously, I got the talk just yesterday...
Because Ava is doing so well and because she is coming up on 6 months post transplant (wow!), they are releasing her back to Sinai Hospital. They will still need to see her at certain milestones but otherwise she no longer needs to check in with them for basic blood work and physicals. After next weeks appointment, we will be taking her back to where we started. Sinai was were she was diagnosed and we loved everyone there. Dr Wiley, who has remained in touch with me throughout all this, is so amazing...we are looking forward to seeing him again. As much as we are happy with the news about being able to go, we also are sad...Hopkins is/was our safe place. They saved our little Ava, its just so bittersweet.
Home life is the same. Ava is ALL OVER THE PLACE.  She has recently started to walk (10 steps at a time), climbs on tables, knocks over chairs, jumps off the couch, and her main mission in life is to climb the stairs...she stops at nothing to do this. I stay very busy during the day chasing her around. She still fights sleep but it has gotten a tad better. We have some good nights followed by some bad nights. There is no pattern, rhyme or reason...she sometimes sleeps and sometimes doesn't. She is still super cute and seems to get cuter each day. She has 3 top teeth, 3 bottom teeth, and hair thats growing in curly...we can't get enough of her!!

 Even Audrey has taken more of a liking to her little sister, she is finally seeing what all the fuss is about! Audrey is really gentle with her and is such a big helper. Ava idolizes her.
I will check in again next Friday when we have more results. :)

Happy Holidays!

This update is so overdue...I am so sorry. Im not even sure if my blog gets checked anymore since I have fallen so far behind ;(
Life at home is non stop. Im not sure if anyone is aware but I have a super bionic baby that requires no sleep...did you know that?  Night time is horrendous, and nap time is non existent. Ava will not nap, and will also not sleep through the night. I will say that I know she can because we have had 2 glorious nights since we have been home where she has slept through. But, other than those 2, we are up constantly through the night. We have decided to start the Ferber method but have a hard time starting, neither of us want to deal with the crying all night.  After a restless night, I spend my day trying to get her to nap. Sometimes hours will go by and Im still in her room rocking her, it is the absolute worst. On top of it, I now have Audrey home on break. The best is when Im in Ava's room trying to lower her into the crib, trying not to breathe, and Audrey is screaming "Mom! Why are you taking so long? Mom!! Im hungry! Are you almost done?!" Ava's eyes open, she starts to cry (and so do I), and then we're back to square 1. I don't know how Ava can sleep 6 hours a night, then take no nap all day?? Seriously, there is nothing more frustrating then her fighting sleep. So, my blog doesn't get updated because I rarely have 10 minutes to sit and concentrate. Sorry.
I will say that Ava's disposition is amazing! Thank goodness, because I would lose my mind if she cried all day. I have never known a baby that is so friendly and easy going, she never complains and is a total love. If it weren't for her sweetness, I would give her away to a different home. But under all her sweetness she has a wild side, and lives up to her name "rugrat".  Drew and I watch her in disbelief at the things she gets in to, her curiosity knows no bounds.  She is destructive, funny, silly, and a definite daredevil...all which makes her even cuter.

On a medical note, she is doing great!  Her clinic appointments are dwindling to once a week now and they have decided to run her T-cell engraftment test once every 2 weeks instead of weekly.  As Ava's lymphocytes are coming in, they are showing more and more of Audrey and less of her own. The past 5 weeks of results showed a move in the right direction. After the DLI was done 7 or so weeks ago, the test result showed 90% of Ava's own lymphocytes were making up her T-cells, this of course is not what we wanted. We were told that it was too soon after the DLI to tell and we would wait and re do the test each week. As the weeks went on, the percent dropped from 90% to 84% to 74% to 55% and the last one was 51%!! So, Audrey and Ava's lymphocytes are coexisting at the moment but are not bothering the blood as a whole, and Ava's own lymphocytes are going down each week (which means more of Audrey is being made). I am eager to see what the results will be after waiting 2 weeks, if they will continue to go down or if they slow down and level out...either way, Dr. Chen has said that this is wonderful and it is exactly what we had hoped for! The most amazing thing is her platelets have been over 300,000 for over a month now and reached 400,000 last week! It was her lack of platelets that started this mess and now she has more than me (I had my blood work done and my platelets were only 320,000)!!  All other blood test results are where they should be at this point in the game... white cells, red cells, ANC, liver function, kidney function, all look great. We are so thankful.

Ava still doesn't leave the house, and is not around lots of people (except for clinic visits). Last week was rough, Audrey got sick and was home from school with a fever for 5 days! I was freaking out! The first 2 days I tried my best to separate them, had them on different levels of the house, air purifiers running, disinfecting everything Audrey touched...I was running around like crazy. That obviously didn't last long. Anyone with a 1 yr old and 5 yr old knows you can't leave either one alone for long. They both needed me and I learned that it is physically and mentally impossible to separate. Day 3, 4 and 5 were a little different, both girls shared toys, ate in the kitchen together, watched tv, and breathed the same air...I didn't care. I washed hands constantly and hoped for the best. Audrey is all better and Ava never got it. Now, either I did a phenomenal job of keeping everyone germ free, or it wasn't contagious in the first place...who knows.
We made it through the holidays this year. The kids got so much stuff! Christmas and 8 nights of Hanukkah are enough already! We of course did Hanukkah with the kids (tonight was the last night, and thank goodness because I ran out of presents) and then did X-mas with my mom and Mike. It was nice visiting, eating, and watching the kids open gifts. We had a tree this year (our 1st one ever) thanks to my girlfriends who snuck in and put one up for me to get me in the holiday spirit. It was so beautiful and made my living room perfect. The kids loved it and even Drew admitted he liked it...the grinch he is. I don't know if we will ever have one again, but it was perfect for this year.

never too old for footie jammies!!

 

 Ava's cell phone

Im trying to think of everything, but I know Im forgetting to mention stuff. Basically I just wanted to check in, give an update, and wish everyone a happy holiday! My New Years resolution is to get Ava on a sleep schedule, to keep my blog going (even though I have nothing interesting to write about), and to start reading again!  I need some "me" time at the end of the day!  I think I will talk to Ava about that tomorrow.

HOME!

Today has been 1 week since Ava has been home. It has taken some adjusting but we are falling right back into our old routines. From the moment we brought her in she was so calm and comfortable, it was like she knew she was home. The first couple of nights she actually slept in her crib all night! We were so thrilled and hoped that she was back into her old habits....but all that changed on Monday :(  She still sleeps in her crib but wakes every couple of hours and requires rocking to get back down. We are tired but will not complain, we are home.
After I get Audrey off to school, Ava and I stay in and do all sorts of fun things. She loves to explore all the rooms, toys, and is obsessed with the animals. Chance especially loves having her home, she won't let Ava out of her sight! Audrey loves having us all home too. She has gone through so much change in the past 4 months, Im hoping that being together helps her and puts her mind at ease.

The first couple of days were rough. I had to get used to taking care of all the kids at once. I had 4 months of one kid at a time and now everyone is here. Between Audrey, the boys, the house, the animals, Drew, and Ava with all her medical care...Im beat at the end of the day!! And to top it off, Ava doesn't nap! Im sure she would if I took the time to lay down with her like I did in the apartment, but Audrey doesn't allow that, my 2 hour napping days are over :(
Along with the everyday stuff, we still have our clinic appointments to go to.  This past week she has shown some signs of a rash of some sort but we have been told that it doesn't really look like GVHD. It doesn't really meet the criteria for it, so we are using a fungal cream and watching. Other than that, she is doing great!! Her counts have been amazing, and we just keep hoping for encouraging news each time we go.  All in all, I love being back. I love waking up and having us all here. I love drinking my coffee in the morning and watching the girls play. I love knowing that Im here for Audrey and she feels more secure. And I love that we will be together for the holidays...the best present of all.

Ava is coming home!!

We got the best news on Monday!!  Ava is allowed to come home!  Her test results showed a slight drop in the percent of her own lymphocytes (90% to 84%), and all other parts of her blood are still at 100%. Dr. Chen is pleased and hopes that all is moving in the right direction. For now we will wait and watch. Thank goodness Dr. Chen feels that it is no longer critical for her to be within minutes of the hospital. If for some reason we need to return for further treatment, we will deal with it when the time comes, but for now she will come home. The rules are still the same for home so I will be doing everything that I have been doing here at the apartment (cleaning, sanitizing, cleaning, and sanitizing) but at least I will be stuck in my own house! She will continue her clinic appointments twice a week and we can only hope for progress.
I had been wanting to do an update last week but was in a little funk. I was feeling really down and depressed about the whole situation. I guess with Thanksgiving and all the holidays approaching, I was feeling like we were never getting out of here. When we got the news Monday afternoon I wanted to write immediately, but never got the chance. Instead I sent out a mass text and also posted the news on facebook...news sure travels fast!
We have decided to bring her home on Thursday (tomorrow) because we had some things to take care of first. I have spent the past 2 days packing up the apartment, cleaning, and loading up my car. I was home last night and was up past midnight putting clothes away in her room, doing laundry, and freaking out. I can't believe Im bringing her home tomorrow. Drew will meet me at the house before the other kids get home from school, we will bring her in together and show her around. She won't know what to do first.
We will be sure to take lots of pictures tomorrow, especially when she is reunited with her bff, Chance!! I can't wait to see Chance's reaction when she sees her long lost baby (who cares about the kids reactions right? As long as my dog is happy...) :)

I am outta here!!!!

Thank you EVERYONE for your sweet responses! We know that many thoughts and prayers have been with us through all of this. We are not out of the woods yet, but at least we are moving on to the next chapter. Sweet Ava Jane will be home with her family tomorrow night!

Im slacking in my posts, I know. There really isn't much to write while we wait to find out the next step. We did get results on Friday and they weren't what we hoped for, her lymphocytes are now at 90%. The good news was that none of her other cells in the blood changed, they are still at 100%. Ava had another test drawn today so we will see what that shows next week. I talked to Dr Chen today and it looks as if we will be repeating the DLI if the 90% goes up more. We are feeling discouraged and defeated, and this living in two places is getting old...