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!

Feeling a little better!

9/2/11- Last night was the parent connection meeting at Children’s Cancer Center. I’m so glad we went. It was so comforting talking to other parents of kids with ALL and hearing them tell me that their kids went through many of the same things Isabella is dealing with now. It made me feel a little less crazy! Now I know that things like swollen bellies happen, and it’s just all a part of the territory. Izzy also has her first clinic appointment in Tampa today. It’s just a blood count check, so hopefully it will be quick and easy! Being realistic though, there is a chance she’ll need a blood transfusion, so I’m packing the laptop and Izzy’s new mega blocks (From gpa Vito and gma Joyce)! She is really excited about them! Now for the most exciting news of all: Izzy slept all night last night!! This morning at 7am when she knocked on my door, I was so excited that we made it past 4am that I didn’t know what to do with myself. Her hunger from the night before definitely caught up with her though. She ate 2 waffles, 2 string cheeses, a yogurt, and milk. Fingers crossed for an easy, tantrum free day!

Home…

8/29/11- This morning the doctors came by for rounds and Izzy is all set to go home today. All they have to do is give her chemo, de-access her port, and get her prescriptions filled and we can leave! Our first clinic appointment isn’t until Friday, so we get to actually enjoy all week at home!

9/1/11- This is literally the first free moment I’ve had to write since we’ve been home. I never considered how little time would be left after meds, diaper changes, the non-stop cooking, cleaning, housework, filling out paperwork, calling doctors, and everything else. Izzy has loved being home so far. She’s eating everything and watching every Disney movie we own! Yesterday we wound up having to make a trip back to All Children’s. She had vomiting and diarrhea all day, she was looking pale, her stomach is so swollen that she looks pregnant, and her belly button (which is an innie) is popping out! They examined her, did some xrays, and decided that it was probably just from the chemo and steroids. It’s just so frustrating at this point. I hate constantly being scared and not knowing what is normal or what is going on with my daughter. I hate that she has to go through this. I know it will get better, and I know that it will get worse before it does. Tonight we are going to a support group meeting. I can’t wait to talk to some other parents who have been through this. Sometimes I sit and think about it, and I’m quite certain that somewhere along the line I fell through a rabbit hole, and landed upside down in another world where nothing makes sense and everything is mad and impossible. Then I look at my daughter and how gracefully she’s handling everything, as if she is a 30 year old woman completely sophisticated and at peace with what she must do, and I realize the only thing I can do at this point is snap out of it and be strong with her. She truly amazes me every day.

Thank you Hammer Heads!

8/28/11- This morning started bright and early. Isabella got up a 4am and was yelling for yogurt. She ate two yogurts and a container of hummus and pretzel chips before she would even consider lying back down. Then at 7am she was up again and ready to walk. So I ordered her breakfast and we walked for 45 minutes until it got here. She of course ate like a champ, and now I’m doing everything possible to keep myself awake and her amused! Today is the benefit tournament for Izzy at Hammer Heads. I’m so grateful that they are doing this for us. Derreck is going to Skype us to Izzy and I can say hi and thank you to everyone from the hospital. And I am excited beyond words that we are most likely going home TOMORROW!! Woo Hoo!

The doctors just came by for rounds and Izzy is set to get her Vincristine chemo tomorrow morning, and then be released sometime around noon! After 18 long days in the hospital we’ll finally be going home!

Derreck just skyped us from the pool/poker benefit at Hammer Heads! It was so touching to see all of our friends there to support us! We are so incredibly lucky!

Mommy’s turn to sleep!

8/27/11- When I left the hospital last night I met up with Adam to go get dinner and a movie. I had a great time, but I found myself getting a little bitter. All I could do was look around at all the kids out to dinner with their families, and think to myself that that should be Izzy. She should just be able to live a carefree, easy, childhood. So when we had a little time between dinner and the movie time, we ran into Children’s Place and bought her some cute new sunglasses and some socks that will actually fit! We did run into Leo and Paola at the movie. It was great seeing them, and the movie was pretty good! Had to nudge Adam a few times to keep him awake though!! I have to admit, it’s really odd being home now. I thought I would enjoy the quiet of the house and finally get some good rest, but instead I was up until 3am cleaning and wishing Derreck and Isabella were here too. Derreck and Izzy had a good night though. His parents went up there and he went for a walk with Izzy. Mom took over for a short while. She fell asleep pretty early and daddy was able to get a good night’s sleep. When they woke up and they walked around the hospital for a while and then she fell asleep watching Tangled. Derreck even went down to the gift shop and got her a really cute cat plush, since her favorite thing to say is Meow. Game plan for today: Finish getting the house ready for Izzy’s homecoming and get back to All Children’s as soon as possible!

On the way back to the hospital, I picked up Derreck a burrito, chips, and a soda. When I got there Izzy ate a third of his burrito, the entire bag of chips, and tried to steal his soda. She then proceeded to eat all of the food we ordered her for dinner, and picked a snack out of the fridge! Needless to say, she is feeling much better today. After she was done eating everything that was edible we watched Tangled AGAIN and she fell asleep. (We’re definitely going to have to invest in this movie when we go home!) I’m really hoping we have A LOT more days like this! Derreck told me that when the doctor came in this morning she said Isabella was still on track to be discharged after her chemo on Monday!

Just keep walking!

8/26/11- Last night was pretty rough. Izzy kept waking up, yelling know and hitting everything around her, but of course she still wanted me to stay in bed with her. Needless to say, I did not get much rest. Then at about 6:45 am she started crying for yogurt. After she ate it was back to walking. We walked for almost 3 hours! Well, I walked while she relaxed in the stroller! It kept her happy, and I got some exercise at least! It was really nice being able to stop and talk to some of the parent’s I met yesterday. It makes the hospital a little less lonely.

Today was the first day I noticed her started to lose hair. She always plays with the back of her hair when she get sleepy, and when she pulled her hand away it was covered in her hair. I took it a lot harder than she did. She just looked at it confused and kept on doing what she was doing. I knew this was coming, and I thought I would be ok when it happened, but it honestly tore me apart a little inside. I guess right now when she’s feeling good, it’s like nothing is wrong, but once she loses her hair I feel like I will constantly be reminded that she is sick. I did get a nice little surprise though, today. As I was walking around the unit for the 500^th time Derreck’s mom and sister came up behind us. It was exactly what I needed! They were even nice enough to go get Miss Izzy some more hummus, yogurts, and Capri suns! I’m just hoping that all keeps her happy for tonight. Once she finally agreed to let us keep in her room for more than 5 seconds, her nurse, Jay, put on Tangled for her and she finally fell asleep. Now she is back up, but content eating her hummus and watching Princess and the Frog! Derreck is going to stay here and let me go home to sleep and get the house super clean for when Izzy gets home. We want to make sure we do everything possible to keep her from getting sick! The last thing I want to add for today is a big thank you to the Moreno family! They ordered up these amazing bracelets that say “hope, love, cure, We love you Isabella Dean”.

Extended Stay

8/20/11- I woke up this morning and called Derreck. He informed me that Izzy’s fever shot up to 102.2 over night. There is no way to explain how quickly I got in my car to get back to the hospital. Right after I got there her nurse, Julie, informed me that they had started an antibiotic last night and they were going to start another called Vancomycin. We were told that a common side effect was the patient turning red and we were really excited when that didn’t happen! Julie came back to check her blood pressure and it had dropped drastically. She went from 148/95 to 76/33. We were told that they were going to give her 2 boluses (bags of fluids) to raise her blood pressure and if that didn’t work they were sending her to ICU. We were warned that if her blood pressure wasn’t high enough it wouldn’t be able to push everything to all of her organs. I was terrified! After no response to the boluses they decided it was time to go to ICU. As we were getting ready she had a raggers episode, where  her arms and legs got stiff and she shook. This is where Derreck’s stress levels hit their peak. He started having chest pains, and before we kn

ew it the room was filled with an emergency team, and they were setting him up with an IV. He was brought across the street to Bayfront Hospital, where they found he had a partial blockage in his heart. He’s doing ok now, but needs to follow-up with a cardiologist. He is going home tonight to get some actual rest, so I’m hoping this will calm him down. As for Izzy and I, we are in for a long night in ICU while the doctors figure out what to do about her blood pressure.

8/21/11-  Enough is enough! Izzy keeps having raggers now, which pretty much look like seizures. Her arms and legs shoot out and she shakes. It’s the scariest thing I’ve ever had to watch. She’s already had 7. They sent her for a cat scan and the EEG tech just got called in to come monitor her. I would give just about anything for a nice boring day!
The good news is because of all of this they are holding off on the chemo she was supposed to get tomorrow.

Of course as soon as they hooked her up to the EEG they didn’t happen anymore, so we couldn’t get a really good view at what was going on.

8/22/11- Izzy is being released from ICU sometime today. Her fever keeps coming back, but they have her blood pressure back up. Except for it’s too high again!! GRR! At least she’ll be back up stairs.  Dr Grams came down and said he wasn’t too concerned about the raggers. He said it was most likely just a combination of the fever and the infections wreaking havoc on her body.
And in case we didn’t have enough bad news lately Derreck’s cousin, Shawn Haines, was found dead in his apartment this morning. He was a very friendly and happy man, and it was way too early for him to go. I feel horrible for Derreck. He is taking this so hard. And after his chest pains on Sunday he really needs to do everything he can to try to stay calm.

8/23/11- We have now been in the hospital for 12 days and Isabella is making it well known that she no longer wants to be here! I walked around the unit about 15 times with her in the stroller just to get her to not scream. She finally fell asleep just in time to be woken up for her blood transfusion. The doctors decided to hold off on the intrathecal chemo again today because of the infection. After her blood transfusion she did receive her vincristine chemo though. And those steroids were in full effect today! She ate a lot, which was awesome, but was also super cranky! She kept trying to throw herself on the ground and trying to hit her head on the bed rails. Today was definitely one to test my patience. I just had to keep reminding myself that she was only acting this way because of the steroids, and that in 19 days we would be done with those! A big part of me really just wanted to scoop her up and take her home. Grandma Dean came and spent a good chunk of the afternoon with us, which gave me a little break and time for a much needed shower, and Derreck came to visit after work. He also wound up pushing Izzy in the stroller around the unit until she fell asleep, and again the sleep was short lived! Everything was going fairly smoothly until the storm knocked out the hospitals generator and we were asked to turn off or unplug anything that was unnecessary. Turns out, the TV was pretty necessary in keeping Izzy happy. The screaming started again and it was time for Derreck to leave. I got up and walked into the bathroom to brush my teeth hoping she would calm down a little and she completely stopped when I walked in. Being desperate for her to get some rest, I decided my best option was to stay in the bathroom, occasionally peeking out, until she fell asleep. Best idea I’ve had all day! My little peanut is now sound asleep and now maybe mommy can do the same.

8/24/11 And another crazy start to the day. Shortly after waking up I got a phone call from Holly letting me know that Derreck was on his way back to Bayfront Hospital due to severe stomach pains. He thinks it might be an ulcer. Once again Izzy isn’t allowed to eat anything past 9am in preparation for her spinal tap. They think she’s going to be good to go today. She’s had no fever for 24 hours and negative blood cultures for 48 hours! Woo Hoo! She is however still quite the monster from her steroids.

The doctors came by for rounds and decided that Izzy will be getting her intrathecal chemo today and while she’s in there they are going to re-access her port since she is due for that today too. She will be getting another platelet transfusion and then be going into the procedure room around 1pm. Also we got a possible discharge day of 8/30!

Derreck did wind up having an ulcer unfortunately, but the rest of the day went pretty well. Holly (Derreck’s mom) and I were allowed to go into the procedure room for Izzy’s spinal tap to keep her calm. Dr. Grana of course did an amazing job and it was over before we knew it. I was even allowed to hold Izzy while she had her port re-accessed. She didn’t cry or anything!  Afterwards we went and played, and of course walked around and around the unit in the stroller. She even went to bed early!

8/25/11-I decided to be ahead of the game today and get all of Izzy’s favorite foods on her tray and ready right after she woke up. What happened? She screamed at the top of her lungs while flailing around and pointing at the fridge for about 25 minutes before realizing she already had what she want right in front of her!!!

Other than the melt downs and never-ending walks today went pretty good. Adam, Tiffany, Margaret, Jessica, and baby Emery all came to visit today. Tiffany brought her up a 6-pack of Danimals yoghurt smoothies, and by the end of the day she drank them all! Our social worker, Debbie came by and informed me that at 4:30 they had a parent support group. She even arranged for a volunteer to play and walk with Izzy  so I could go. It was great meeting some of the other parents who knew exactly what we were going through. Derreck came up after work and hung out. He even made me ramen noodles cooked his special way, and brought them up in a container with “I <3 you” written on it! I filled him in on our day and the results we had gotten from her bone marrow test. They basically showed that she had favorable genetics for a good prognosis, but fell into the standard risk category. At the end of the 35 days of induction they will do another test to see where we go from there. Izzy finally passed out for the night around 8:30 and the night nurse printed me out her blood counts from yesterday and today. Yesterday her ANC was down to a zero, and today we were still only at an 11. I’m really hoping it goes up some. I know she’s ready to go home, so we need to stay healthy and fever free!

The First Week

8/15/11- The morning of the surgery is when it really set in. She received one more platelet transfusion and was off to the OR. The wait felt like forever. Finally our pager went off and we were brought to a consultation room where the surgeon who placed her port met us to let us know everything went fine. We were so relieved! I felt like we made it passed the first big hurdle. We always knew Isabella was strong, and we had faith that everything would be fine, but hearing that it was over and she was really fine made all the difference. About an hour later she was finally brought back to us. It was so hard to see the port at first. The thought of a needle going through the center of my daughter’s chest with a tube running to her heart was probably to thank for many of my new grey hairs. The Ronald McDonald House was generous enough to provide a room for my mom and cousin so they could stay close by.

8/16/11- Today all of our education really began. We learned about ANC counts which pretty much tell us her ability to fight off infection. Less than 500 she really needs to stay home and avoid the germs. 500-1000 puts her at moderate risk, but she has a little better chance of fighting stuff off, and above 1000 her immune system should be able to fend stuff off just about as well as any healthy kid. We learned about all her different chemo treatments and their effects and the medications she would have to take to counteract those effects. By the time we’re all done with this I’m pretty sure we’ll have medical degrees of some sort! LOL. On a positive note, one of our many amazing friends started a fundraising page for Izzy, and our social worker met with us and told us about several organizations that could provide support. For the first time I finally feel like things are going to be OK. I know we have a long road ahead, but I know that there will be people there to help us through it all, and that makes it that much easier. Izzy did, however, have to get her port re-accessed today. She got a good tug on her IV cord and suddenly her whole chest was wet. I guess she pulled it hard enough to wear the fluid was under her skin, but above the port. The nurses put a heparin block in to keep it from clotting and then removed the need and let her shower. After her shower they put a numbing cream on her chest, and once it kicked in, we were off to the procedure room to have it re-accessed. Luckily my mother-in-law was here, and was nice enough to come with me. I think I needed her more than Izzy did!

8/17/11- My mom and cousin are leaving today, but I can tell my mom does not want to go! I know she has to get back to work, but it was definitely nice being able to have someone else to help occupy Izzy. The steroids she is on are making her insane! They warned me that they would have a bad effect on her behavior, but I don’t think I really expected this!  And poor Izzy had to have her port re-accessed AGAIN!!!! Apparently she really wants to leave. She managed to get herself so twisted that her IV tube came unscrewed and blood starting coming back up through her port. They were worried about it clotting off so they didn’t have time to use the numbing cream before taking her into the procedure room. She was so brave! She only whimpered for a second. She is so strong, but I really wish she didn’t have to be.

8/18/11- Today is day 4 of her treatment, so it was another chemo day. She did really well. The doctor said she is the only patient she has seen have no allergic reaction at all to this kind of chemo. (I knew she was tough!) Unfortunately she has no appetite and is super cranky and uncomfortable. I think she might finally take a nap. Hoping that helps her out! We got a print out of her blood counts today so we could calculate her ANC and it was only a 23.5!I’m just hoping she doesn’t catch anything! Our friend Carolann made a prayer page for Izzy today. Every time I see something one of our friends is doing for Izzy, I am again amazed at how lucky I am to have such wonderful friends.  We also got some really good news today. If everything keeps going well Izzy will be discharged Monday! Woo Hoo!

8/19/11-They are letting Izzy off of her IV until tonight so she gets to go play without being followed by a pole! I’m so excited. I can’t wait to go down to the play room and watch her run around again for the first time in a while.

We went to play, but that apparently wasn’t a part of her game plan for the day. She seemed too weak to walk or even stand. I was so worried. I let the nurses know about her strange behavior so they took a look at her and sure enough she is running a fever! It’s only a slight fever, but they are still going to start a round of antibiotics, and we will now be staying a few extra days. I’m really bummed, but if this is what it takes for Izzy to get better, then that’s what we have to do. It took a lot of convincing, but I’m being sent home for the night. I haven’t gotten a good solid chunk of sleep since we’ve been here, so I’m starting to feel sick. I’m hoping I’m just over tired. Hopefully after a night of sleep in my own bed, I’ll be recharged and ready to go!

The Story

One of the things I said when we found out Izzy was diagnosed with Leukemia is “At least she’s so young that she won’t remember any of this.” And then the more I thought about this, it made me sad. Why shouldn’t she be able to look back and realize how much she’s overcome and how amazing she is? So, I have decided to keep this blog as a journal for her. I plan to update it as often as possible, so one day she can look back and she how strong she is, how much she has accomplished, and understand why she is my hero in so many ways.

So I’ll start with the beginning:

8/12/11- We noticed Izzy getting more and more tired by the day. We thought it was just and combination of teething and all the running around. Something just wasn’t right though. She had bruises, which is normal for a kid, but it just seemed like a lot and they were taking a while to go away. I decided to call the pediatrician just to be sure. After I explained her symptoms the pediatrician decided to send us to the ER for a full work up since she had a history of iron issues.

Once we arrived at Mease Countryside they did some blood work and her levels were extremely low. Her hemoglobin was at a 2 when it should be an 11 and her platelets were an 8 when they should be at 150! We were told she would need an immediate blood transfusion and would be transferred to the ICU at All Children’s Hospital. After arriving at All Children’s we were immediately moved to the hematology and oncology floor. At this point I was still assuming an iron issue, and an infection. After running more blood tests the doctor came in and informed us that it was likely Leukemia. We thought for sure there must be a mistake. Anything but that was to blame. Of course after further testing, it was confirmed that our little girl had Acute Lymphoblastic Leukemia. I was filled with guilt. How long did she have it? How did I not know?  How could something this serious be wrong. The doctors assured us that there was no way we could have known sooner and we had done the right thing. Apparently this type of cancer is aggressive enough to kill someone in less that 3 weeks if left untreated, so the important thing was that we were here now. The night didn’t get much easier. We had to watch her endure 2 more blood transfusions and 2 platelet transfusions, and somehow we had to come to terms with what we thought was impossible.

8/13/11-  It was hard enough for us to hear, but now we had to tell everyone else who loves her so much the diagnosis. Everytime I told someone the news, I couldn’t believe the words coming out of my mouth. The only thing that got me through it was the amazing amount of love and support on the other end of each phone call, text message, and facebook post. All we could do was look at her and think of all the things she would have to go through over the next 3-4 years. The thought of a battle longer than she was old was nauseating.  We were informed later in the day that she would be given the rest of Saturday and Sunday to regain her strength and then Monday she was going to surgery to have a bone marrow aspirate, a spinal tap, intrathecal chemo, and have a port implanted in her chest. At this point I was so afraid I was almost numb.

8/14/11- The Sunday before the surgery seemed so hectic. My mom and my cousin drove down so they could be here, and several other people came by with gifts for Izzy and lots of hugs! Doctors were in and out all day taking vitals and giving us information galore on all the changes in our life that they say will become the new normal. Our days would now include saving and weighing every diaper, noting everything she ate and drank, a never ending medicine regimen, hourly vitals, and the list went on. I was trying to pay attention and absorb as much information as I could, but all I could really do inside was panic. I can’t even count how many times Derreck and I looked at each other in disbelief that this was happening. In less than 48 hours someone had taken our entire world and turned it upside down.