YAY!

2/2/12- Ever since our scare with the reaction to Zofran things have been relatively calm for Izzy. In fact thanks to her  ANC counts refusing to come up, she’s been chemo free for a few weeks! I think she actually misses being at the hospital. The other day she asked to put her EMLA (numbing cream) on her boo boo (her port), so we could go bye byes. Sometimes she’s too much! Next week I’m pretty sure her counts will be where they need to be though, so we will be there every day. Monday will be for fun though! We started going the Music together program at All Children’s on Monday mornings and Izzy loves it! Then Tues-Fri will be chemo and a spinal tap on Wednesday.

We do finally have some exciting things happening in the Dean house! For starters the house is coming together, which is making things a lot less stressful. And I have the amazing opportunity of being a part of a group called 46 Mommas. Here is a little letter I wrote up to explain what I’m doing. I’m hoping to spread it around as much as possible so please help!

 

Hello,

My name is Christine Dean. I am the mother of an amazing little girl, Isabella “Izzy”, who was diagnosed with Acute Lymphoblastic Leukemia in August of 2011, when she was 21 months old.  I’m writing to tell you about an amazing thing I have the honor of being a part of this year. This July I will be going to Los Angeles, California and shaving my head with 46 Mommas.

We are 46 Mommas on a mission to raise awareness, raise funds for research and inspire others to help fund a cure for childhood cancer.

Each year a new class of 46 Mommas is inducted into the cause to empower and engage mothers of children with cancer.  The number 46 is significant. On average, each weekday, 46 families receive the news that their child has cancer.  Through increasing awareness of childhood cancer and raising funds for childhood cancer research by shaving our heads, we hope to one day be a group that no longer needs to exist.

Our goals are:

• Raise $1 million for St. Baldrick’s Foundation’s childhood cancer research programs
• Hold an annual head shaving event, uniting cancer mommas and their families, to help raise these research funds.
• Increase awareness of key childhood cancer issues in our local communities
• Advocate to increase funding, both nationally and locally, for childhood cancer specific issues
• Collaborate with other childhood cancer organizations to help produce a stronger, united childhood cancer community.

The St. Baldrick’s Foundation funds more in childhood cancer research grants than any organization except the U.S. government. Since 2000, more than 187,000 volunteers — including over 16,800 women — have shaved in solidarity with children with cancer at events in dozens of countries and every U.S. state.

So today, I’m asking you to please take the time to help us in any way you can. Whether it’s spreading the word, making a donation, or simply taking the time to become more informed on childhood cancer, your help is very much appreciated!

 

Thank you,

Christine Dean

Proud Class of 2012 Momma

http://www.stbaldricks.org/participants/mypage/509395/2012

http://46mommas.com/

Learn more about Izzy:

http://izzyvsleukemia.wordpress.com

 

 

 

 

2012…please be better!

And the roller coaster continues… She took a little nap after her Uncle Adam left, and when she woke up she was running a fever and looking miserable again. I tried to get her to eat some of her favorite foods and she refused everyone. And then when I asked her if she wanted some juice, she threw up! What happened?? I’m  getting so nervous  that they’re not going to release her in the morning.

12/30/11 – Well Izzy is looking much better this morning. Since she napped all day, she did not sleep much last night! She does seem to be feeling less icky, and she’s eating a little and drinking her apple juice. The good news is she’s not vomiting, so when Dr. Kelly came by, she said as long as she’s holding fluids down, she feels comfortable letting her go home today! I am so excited that we will be ringing in 2012 from our own home!

1/11/12- Up until today 2012 was going pretty smooth for us. We had a great New Years Eve and Day at home with friends and family, and Izzy has been doing great and not having any more side effects from her chemo.

Today things didn’t go as smoothly for us. We got her blood counts back which showed that her ANC counts dropped down to 78, so we have to be super careful about germs again. Then  Izzy was getting her Zofran, a medicine to help with nausea, just like she always does before her chemo. About halfway through she started having a coughing fit. I would have thought nothing of it, except she had the same reaction last time. Luckily Izzy’s nurses realized as fast as I did and turned off her Zofran. Before I even really grasped what was happening, she was turning purple and gasping hard to get air. They got her some Benadryl and Albuterol, and within a few minutes she was fine.  I really have to thank the nurses for their quick thinking and actions. By the time I realized the severity of the situation and started panicking, they were already resolving the problem.

Izzy had gone into anaphylaxis, which is a severe allergic reaction. It’s really rare to be allergic to Zofran, so the next challenge is figuring out what they can give her in place of it. Thankfully, Izzy is doing much better and we are home! Hopefully the next week will be nice and quiet. We have to go in for blood count checks next week, but as long as everything looks good, no chemo or long visits for a while week! Unfortunately the week after we are there every day, but I’ll know we’ll get through this!

Being admitted can have it’s perks!

12/29/11-Last night was another eventful one. Since Izzy was running a fever we had to take her down to the ER. We’re used to this routine by now! We get here, do some blood cultures, get a bag of IV fluids and some antibiotics, and are usually sent on our way. We weren’t quite as lucky this time though. Right after I signed her discharge papers she vomited again. The nurse decided to take her temp one more time and she was still running a fever. He said he didn’t feel comfortable sending us home, so he wanted to go check with the doctor one more time. They decided it would be best to admit Izzy so that they could keep her on fluids and Zofran all night, and then let Dr. Grana see her this morning.

Today Izzy’s looking a little better, but her fever still won’t seem to stay down. She’s being so good about everything though. I hope my little girl is feeling better really soon so we can go home!!

Well today turned out to be an eventful day! Pentatonix, the a cappella group that one the Sing Off last season, came to All Children’s Hospital today to perform for the patients! Izzy used to dance to show all the time when I watched it, so I was really excited for her to get to hear them in person! At first she was really shy, but then she got into it and she was dancing as if she wasn’t even sick! After that she even ate really well! I guess she just needed a little music and dancing to cheer her up. I just want to say a big thank you again to Pentatonix for taking the time out to come do this. Not only are they an extremely talented group of individuals, but they all had wonderful personalities. I wish them all the best in the future!

As long as Izzy continues to hold down food, she can get back to shaking her booty in her own home tomorrow! Her fever keeps creeping back up, but as long as we can keep her hydrated, they feel comfortable letting her go. *Fingers Crossed!*

http://www.flickr.com/photos/allchildrenshospital/sets/72157628625095471/

You can also check out all of the videos from PTX’s visit on my youtube channel:

http://www.youtube.com/user/ChrissymDean/videos

Merry Christmas!

12/28/11- I am well overdue for an update! Izzy finally got to have her belated birthday party, and she had a wonderful time. We also had a great Christmas! Izzy was really into it this year and Santa was very good to her.  We’ve also since received her Flashes of Hope photos which came out so good!

 

Here’s where Izzy is as far as her treatment: Today was her first day of delayed intensification. She was scheduled to start last Wednesday, but her ANC counts (which represent how strong her immune system is) were too low for her to start this next round of treatment. Today she had a Lumbar Puncture, Intra-thecal Methotrexate chemo), Vincristine chemo, and Doxorubicine chemo. As always, she did wonderful. One of these days I need to video her going through an appointment, so everyone can see how well she does. She knows the routine and no matter how much she’s going through, she’s always so cooperative when she needs to be. I know I may sound bias, but she really is a smart little cookie!

Her next appointment is Tuesday. She’ll get another kind of chemo called Pegaspargnase. And then the next day we go back for more Vincristine and Doxorubicine.

Well just to show how much free time we get around here. As I was writing this, I checked Izzy’s temperature and sure enough she was running a fever. Now we are back at All Children’s in St. Pete. As long as her counts are good she should be getting some antibiotics and going home! Here’s hoping this won’t be a very long stay!

 

Izzy is 2!

11/11/11- Today was actually a pretty good day. Izzy had her appointment this morning with her pediatrician for her flu shot. It was great seeing Dr. Jara and everyone at Caring Pediatrics. This was her first time back there since being diagnosed. It was actually really comforting to speak to the doctor who has been taking care of Izzy since she was born.  Izzy did great, and had no reactions to the park. She spent most of the rest of the day at the park with her Aunt Ang, while Derreck and I spent the day working on the house with his parents. It’s really coming along nice and I can’t wait to get in there!

11/18/11- This week went pretty smooth. Monday morning we arrived at All Children’s at 6am for Izzy’s port revision surgery. When the surgeon came in she informed us that Izzy would not need to stay for 23 hours observation, and that we could probably go home shortly after the surgery! Everything went really smoothly and by 2pm we were on our way home!

Since Tuesday was her birthday, but she couldn’t be too active for a few days, we only had a few people over and did cake for her. She loved blowing out the candles! I think we re-lit them about 10 times so she could blow them out again!

Wednesday we were back at the Tampa clinic for her chemo. They were able to access her port quickly and easily. Her ANC counts (which show how strong her immune system is) are starting to drop, but everything else still looks pretty good! As always she did wonderful with her chemo! I’m just hoping we don’t follow the same pattern as the last two weeks and wind up with a fever 2 days after chemo! Izzy did get a nice little surprise while she was in the transfusion room for her chemo. Michelle from child life came in with a birthday present for her. It was a great distraction to what was going on and she loves her new baby doll! Our next appointment isn’t until after Thanksgiving! She goes in the 28^th for more chemo and the 30^th for her next lumbar puncture with chemo.

Here’s hoping we have a nice quiet hospital free week!

MUST HAVE SLEEP!

11/10/11- Exhaustion does not even touch what I feel right now. Here’s a quick re-cap of my last 48 hours: Yesterday I woke up at around 5am, because Izzy apparently didn’t receive the memo about the time change. Then I worked 9-11. After that I went over to work on the house, Came home to work 3-5, and then went to home depot for more paint, picked up Ang from school, and went back to the house to do some more work! Then around 8:30 last night Derreck, who was home with Izzy, called to let me know she was running a fever. He called the clinic and the doctor wanted us to bring her into the ER.

When Izzy and I got there, her temp was up to 104.9! Luckily her port cooperated and they were able to get a vein for a peripheral blood sample on the first try as well! (Thank you very much to our awesome nurses last night! They took wonderful care of Izzy!) Izzy was awesome. She didn’t cry once. She said ouch when she got accessed and when they drew her blood, but that was it! She really amazes me.  The doctor said everything looked good and her counts were fine. It seems that she just winds up with a fever 2 days after her IV Methatrexate each time. They gave her some Tylenol, a bag of IV fluids, and antibiotics, and released us at around 2:45 am.  I finally got to fall asleep somewhere around 4am.

Next thing I knew Angela was waking me up asking me what time I needed to leave for Izzy’s surgery consult. Somehow it was already 10am and our appt was for 11 (or so I thought!!!).  I’ve never gotten dressed and out the door faster in my life! When I was about 10 minutes away from the hospital I got a text from Derreck saying to call the clinic to reschedule my appointment! I called him up panicking, and to my horror, found out that my appointment was at 10, not 11!

Fortunately my mental breakdown was completely unnecessary because they still saw us anyway! We were even seen right away. The surgeon explained to us that they are going to go into the original incision and place a new stitch to anchor the port. She had looked through the notes from Izzy’s original surgery and the port was stitched down to begin with, which explains why we didn’t have trouble at first, but now all of a sudden it won’t stay still. The stitch must have come out or come loose since she’s growing so quickly at this age.  There is risk of infection and bleeding around the operation sight, but it’s better than the complications that could come from her port continuously flipping over. The good news is that if everything goes well, she will only need to be in the hospital for 23 hours of observation. The bad news is that surgery is scheduled for Monday, so she’s going to be in the hospital for at least part of her birthday.

I was at least smart enough to spend the rest of the day in Tampa so that I wouldn’t have to drive all the way back down tonight for the meeting at the Children’s Cancer Center at 6. I decided Izzy deserved to have some fun, so I took her to International Plaza to go run around and the Disney store there is awesome! They had a winter wonderland thing set up where Santa was, and she got to play in the fake snow. She loved it! The meeting at the CCC was great, as always. Izzy had a lot of fun, and I got a needed reminder that there are other people going through this too, and that it will eventually be better. I really am so thankful for everyone there!

And now here I am. Izzy is sound asleep after a very fun day! Time to get some rest! Now all I have to do is hope that I wake up and make it to her appointment tomorrow morning!

Ready for a break!

10/5/11- I can’t believe it’s been this long since I’ve updated my journal. Time literally flies by, and most days I feel like I’m losing my mind. Days and weeks are literally blended together in my mind, and I have no idea how we’re already in October! Izzy is doing wonderful! The treatment phase she’s in now is called consolidation and will last for 28 days.  Today is day 8 already! She would be in day 15, but they had to hold her treatment for a week, because her ANC counts were too low for anesthesia. Last Wednesday she received her Vincristine chemo and a lumbar puncture (spinal tap) and was also given Intrathecal Methotrexate, which is another form of chemo that is put directly into her spinal fluid. She also got the opportunity to get her photos taken from a group called Flashes of Hope  (www.flashesofhope.org ). They are a non-profit organization that does free photographs for children with cancer. They were wonderful and we can’t wait to see how Izzy’s pictures come out! Today was another lumbar puncture with chemo, and she’ll have one more next Wednesday. On top of that she’s also taking Mecaptopurine (6MP), which is a chemo she takes orally, every day for 28 days. Just in case that’s not enough, she’s also still taking Septra every weekend, which is an anti-biotic given to prevent her from contracting the type of pneumonia that is responsible for death in AIDS patients. So needless to say it’s been a little busy. Her appetite and swelling have dropped dramatically, and she’s definitely acting a lot more like herself.  I’m so amazed at how well she handles everything. She’s wonderful for the nurses and doctors. She holds out her arm for the blood pressure cuff, helps the nurse push the medicine syringe into her port, she say thank you, waves, and blows kisses to everyone, and hardly ever even cries anymore. In fact today she was blowing bubbles and giggling with the nurse while they accessed her port. There is no way I could laugh while someone stuck a needle in my chest! She’s insanely brave and so smart! She understands that these people are all helping her even though it hurts.

Overall things are hectic, but going well.  I do want to add a quick reminder of how important it is to donate blood. During Izzy’s hospitalization when she was diagnosed she received 6 blood transfusions and 4 platelet transfusions. We were so appreciative that the blood supplies were readily available when we needed them! Help make sure that this is the case for everyone in need! It only takes about 30 minutes to donate blood, and you can find a blood drive or local blood bank near you by going to www.fbsblood.org.

BEST NEWS EVER!

9/16/11- Around 8:30 this morning Derreck received a phone call from All Children’s Hospital. The bone marrow results came back, and Isabella is in remission! We are both extremely excited! It looks like we’ll only need to be at the clinic once a week for the next 4 weeks. She will have to get a spinal tap at each of those appointments, but at least we know she’s responding really well to the treatment. Yesterday and today were pretty good days for her too. She’s been in a little better of a mood, and I think her diaper rash is finally starting to clear a little bit. Yesterday we went and saw Jenna, Scotty, and Sammi Jo (the new baby). Izzy got to hold the baby and she was so cute. She looked like she knew exactly what to do. She even gave her a kiss, and bent down to say bye to her before we left. Then today Tiffany, Josh, Jessica, and Emery all came over. So she has definitely been having fun and keeping busy.

Last day of Induction!

9/14/11- I am so glad that today’s appointment is over! Izzy is doing wonderful. Her procedures went pretty well. It took 4 tries to get her bone marrow to cooperate so her back is a little achy, but she did great. The nurses said she didn’t even cry when she woke up. She just said “ouch.” (What a big girl!) We did have a little problem with her port not having blood return, but they were able to push some medicine into the port and thirty minutes later she was good to go.  She’s a little sore, but she’s home watching TV and eating now! Her ANC counts are up, so we’re going take advantage of it and visit some friends and hopefully take a trip to Hammer Heads to say thank you to everyone.

Well, we did get to go visit everyone at Hammerheads and we even stopped and visited Brittani on the way, so I would say this evening went very well! Izzy even has a new lady bug pillow pet to sleep with tonight thanks to Nurse Judy. Now I just have to hope she gets plenty of good use out of it tonight!

What’s sleep?

9/2/11 (cont.) -Woo Hoo! No transfusions today. We had to get another prescription because the steroids gave her a rash, but other than that she looks good. The doctor was even impressed with how many words she knows and how well she talks! My little girl is a smart cookie!

9/3/11- I’m exhausted! Izzy woke up at 3am and 5am to eat, and then was up at 8:30 ready to go for the day! At least she has a good appetite!

9/10/11- Izzy showed me her hands today and they were covered in hair. I know it’s all a part of the chemo, and that it’s probably one of the least substantial things going on right now, but it still made me tear up a little. What does my sweet little Izzy do? She puts her binky in my mouth kisses me and starts giggling. Since when did she become the one responsible for cheering me up? I have the most amazing daughter.

9/13/11- I officially have less sleep and free time then I’ve ever had in my life! Isabella is doing well though, so it’s all fine with me. These past 10 days have been so hectic. Yesterday was her first day off of the steroids. I was so excited to finally be done with them, but I should have known better than to expect things to be better right away. She cried like she was in pain from 7pm until around 11pm. We called the clinic and got the ok to give her a dose of Tylenol which helped calm here, but she was still up off and on all night. I was really happy to see that this morning she was just fine again. She even got to see her friend Josh today, and gpa Vito came over.

Tomorrow she goes in for her next procedure. She’ll be put under general anesthesia and have a bone marrow aspirate, a spinal tap, and intrathecal chemo.  I cannot wait for it to be over and done with. The worst part for me is anything where I can’t be with her, and I knows she’s going to be miserable when she wakes up, which is the hardest thing to watch. On the bright side when we get the test results back, we’ll know whether she’s in remission and how aggressive of a treatment she’ll need to receive over the next few years. She’s been doing so well, so I’m definitely hopeful that we will hear good news! Now to get both of us to bed so we can be up bright and early for our trip to Tampa tomorrow morning!