Florida Weekend

My sister and I made it safely to Florida to see our Dad!! We did sit in the airport for a nice six hours while our plane was delayed due to "maintenance". We ended up getting here shortly before sunset on Friday. This was actually the only time that the sun has shone on us, so I am so glad that I had my camera and took these pictures! I love to play with my camera, and I actually had the time.
We are staying at the Water Club on Longboat Key. It is my Dad's newest acquisition. We are in the back of this building on the 6th floor. It is absolutely beautiful, even without the sun. You can look out one side of the place and see the bay and the Sarasota buildings skyline...and then the other side looks to the beach and the Gulf of Mexico.
Or you can just walk downstairs and sit by the pool...from which you can also see the ocean. I love this...it is double the pleasure to have both!
You can see it was even a bit cloudy on Friday night, but it made for an awesome sky.
So, contrary to what my husband may have written, we are not frolickly on the beach or applying any sunscreen. It is only about this warm....

Regardless, I am just so happy to be away from Dayton that I don't mind the cloudy weather. In fact, I was the crazy one yesterday that got into the outdoor pool when it was only 60 degrees and cloudy. The pool water is about 90, so I took advantage and swam about 1000 meters...channeling my old competitive swimming days. And then quickly got out and went into the hot tub. The people who work here were wearing stocking caps and gloves. HAH!! Hey, I have learned to live life to the fullest.

Shortly after that, it did start to rain for the day. Soooooo....we went to Target and bought tons of stuff for the new place. This is the main reason we are here anyway. We are trying to get it ready so that YES I can actually bring my family down here once Ally enters into the maintenance phase of her treatment and the doctors clear her for travel. I am hoping for late summer on that one. We bought blankets and towels and beach toys and kitchen stuff and toiletries and picture frames and vases....and Dad's bill was about $800. But....again, that is what we were supposed to do, right?

So that is about the extent of it. I have gotten a full 9-10 hours sleep each night which is amazing. (love that melatonin, by the way). I have actually had the time to read a book (New Moon, from the Twilight series...guilty pleasure). I am exercising each day. Enjoying my time with my Dad and my sister. We are going out to some really really good restaurants...and anyone who knows me well will appreciate this....I ate fish!! YEP, Grouper. Wow, I don't know what got into me. It was really quite good if I just put the whole "texture issue" of it out of my head.

It is supposed to be cloudy all day today with rain coming tomorrow. I really don't mind. I can go look for shells with my sweatshirt on. Maybe go for a run, with my sweatshirt on. Either way, I am not at home where it is 24 degrees according to my husband. I do check on the family several times a day, via our awesome webcam...I can see them. (which, by the way, how funny to offer a two year old M&M's via the webcam, she just doesn't get it...Dad tried that) Ally is doing just great and that makes the whole trip that much better and less worrisome for me. I am hoping Dad shares the pictures of the awesome WSU Men's basketball team wearing their Ally's Army orange. I saw it online a bit, but would love to see some pics. Hint hint.

Better go...I have about 24 hours of relaxation left before I have to leave this beautiful place.

Quick Update from Dad

While Janel is out galavanting on the beach, actually seeking rare seashells is more her forte, I thought I would give everyone a quick update on Ally. She is feeling great once again! Not only did the stomach flu seemingly pass as quickly as it came Wed/Thurs, her counts must be going up because she is quite the ornery one. When she starts calling me weird or stinky, I know she is feeling well. And the melatonin experiment worked wonders. She slept for 10 straight hours!

Janel and Melissa made it safely to Longboat Key and are having a great time with Bob. Even though their flight was delayed about 4 hours, they made the most of it. Who knew you could get a manicure at the airport? And Janel did indeed go shelling yesterday and was heading out for a swim when we "skyped" her and Bob this morning. For those of you that haven't discovered Skype yet, lookout because we have fallen in love with video calling. It was great to see video of the sunshine and blue water.

Finally before we head out to Evan's game and the Wright State game, I wanted to let anyone that might be attending today's game know that you'll see the men's team coming out for warm-ups in their Ally's Army shirts! We'll all be in our orange shirts as well behind the basket by the WSU bench. Coach B (aka Brad, aka Missah Brownell as Carly calls him) called yesterday and said they wanted to show their support for Ally on the Coaches for Cancer day. We are so appreciative of the support of everyone at WSU, and the guys on the team have taken a real interest in our little girl thanks to Brad and his staff. Janel loves seeing Brad's Ally's Army bracelet when they are on TV!

And don't forget (from Janel's blog awhile back) that the womens team is going to honor Ally on their Coaches for Cancer day on Saturday, February 20th at their 3:00 game. Ally is going to be presented with a pink ball at halftime. Thanks again to another Coach B (Bridgett Williams) for thinking of Ally as well. We are blessed to have so many friends.

Well, I'm off to the sunny beach...Oh wait, that's Janel. At least it is sunny here, even if it is only 11 degrees!

Experiment Failed, Pass 1

Well our little experiment last night turned into much of a nightmare. Shortly after midnight, Ally started complaining of belly pain and proceeded to throw up or try to throw up all night. The poor little girl didn't have much in her belly, but just kept trying. At first, we didn't think it was anything more than normal for her, but after it happened repeatedly we realized she had the stomach virus that has been running rampant around here. So the melatonin didn't much work, however I HAD taken the melatonin and was then completely exhausted while trying to take care of Ally all night. So we are trying again tonight.

Her illness quickly caused me to come to complete panic state as I am leaving for Florida in the morning. I was taking her temperature all day (this is what us leukemia parents just do). I was ready to look into changing my flight, but I had several friends who were completely encouraging me to go anyway. So I waited. Ally did get better throughout the day, thankfully. I said it before, but if something is going to go wrong around here it will always fall on the day of some big event in our lives. But alas, I think she is better and I am packed and ready to go.

Today, in the midst of all of this sickness and/or worry on my part, I had so many friends who offered to step in just so that I could go. Sick or not sick they wanted me to go and were willing to step in regardless. I know everyone is always worrying about Ally, but today I felt like everyone was more worried about me. So thanks for supporting me...it is true that I need a break to refuel my engine and come back to take on the next four hard months of intense chemotherapy...and all the crap that goes with it. I would give anything if I could just take Ally with me too. But for now, the break will be nice. Kinda like they say on the airplane...put the oxygen mask on the parent first, and then on the child. The parent must be well to care for the child.

So thanks to everyone who tried to come to our rescue and force me to go anyway. I am going! And thanks to everyone who has offered to help my husband and the rest of my family through the weekend. We are grateful.

Melatonin Experiment

Not much to report from our bubble. Ally is still doing okay...I would say fair. She ate absolutely nothing today except for a chocolate graham cracker (healthy, I know). Her belly hurts, her legs are hurting from the vincristin and she burst out in tears a few times. So I guess that is saying we are back to our chemo-reality. I am still okay with it though...as long as we are not in the hospital or dealing with crazy dark rooms and/or headaches. I was about ready to jump out the window by the time Jerad got home from work. I was on my last nerve because I believe someone said "mommy" about every three minutes all day long today. I mean for 12 straight hours. And then, I have Ally wanting to help me with absolutely everything. I never cook a dinner without her. She is in there doing laundry with me, looking over my shoulder with every work thing I do, etc, etc. You get the idea. And although I know it is a blessing that she wants to be with me every minute, I also need a small amount of space or I could go crazy. And I was close. Personal space is a good thing and I need some! So I am really really looking forward to having my weekend away with my sister and my Dad. I am so grateful. I don't even think I could be as generous as my husband is being by letting me go. I know I would be too scared that something would happen. But if you know Jerad, he is as laid back as they come. And luckily my kids have inherited this gene from him too. So off I go......on Friday morning.

We are trying a bit of an experiment. I wanted to see if anyone had anything wise to share about this. Ally has been having a lot of trouble with sleeping. A lot. She is up on average four or five times every night and it also takes her a fair amount of time to fall asleep. This has been going on for months. I don't know what it is (she is not taking the steriods right now) but it causes a lot of stress around here. It is also quite rough on the parents, primarily Jerad, so I finally decided to talk to Dr. B about it. I told him the problem, but then I quickly stated that I did not want any sort of narcotic or vicodin or ambien or anything like that. I am VERY careful to give Ally as little medicine as absolutely possible...God knows she certainly gets enough chemo in her little body. He told me to try melatonin. This is actually a natural substance that our body makes that can be purchased at the local Vitamin World. So we tried it tonight. And I am actually going to try it myself tonight as I also have a lot of problems sleeping. So I will let you know how it goes, but wondering if anybody else uses it or has any advice???

Also: our friend Cory is doing much much better. I am not sure if he is technically out of the coma, but he is off the ventilator and sedative medicine and is responding to things. I am so grateful that God is Good! Prayers do work! Keep sending them up for all the kids!!

Last Day of Delayed Intensification I

Our week has started off a little yucky. I always know the good can't last too long, and it doesn't. I had just gotten Evan onto the bus, and started to run to the store when I got the call. Ally threw up at school. (another first!) So I ran and got her and she was also really complaining about her ear hurting. Weird. She didn't get sick the rest of the day, so I kinda just figured it was fluke or something. But I do know that the stomach virus is going around. I am actually wondering if it was caused by her not taking her typical nightly medicine for stomach upset which is Prevacid. Our lovely insurance company told us they would no longer cover it, and would only allow generic. But the generic doesn't come in a solutab (dissolvable tablet) until mid-Feb so we were kinda stuck. I finally got her the generic liquid version today (after long days dealing with insurance stuff). I paid $100 for that bottle and she took one taste of it and said no more. So there goes another $100. Grrrrrrrrr......so frustrating to me. Can't they figure out that the poor girl is doing chemotherapy and gags on everything? And, No she can't take a capsule, she is EIGHT. (but I am still working on her doing that)

So today, she was fine so I drove her over to school and she starts fussing about her belly again the minute we get into the parking lot. I just didn't feel like pushing her and we had to go to the hospital for chemo this afternoon, so I brought her back home. I made her sit and read and do math and write a letter to her Great Grandma and her Great Aunt. Then I taught her about spreadsheets (I am an accountant and I was trying to do W-2s today). So some learning, and off to the hospital we went. Thank you Julie for staying with the other kids while we went to CMC.

Today our appointment was at 2:45 and by 3:05 her chemo had come up from pharmacy. Wow it usually takes two hours, so I just had to write that out there for all of my hospital friends to see!! She wasn't even accessed yet. We still ended up staying about two hours after waiting for her blood results to come back and also a thorough examination by Dr Broccoli. (her ear was fine, btw) We discussed the fact that she is done with this phase (delayed intensification) today and moving on to another 8 week course of chemo. He pretty much laughed when I asked if this phase was gonna be easier. Hahahahahahaah....Dr B is just known for laughing at any and all questions. I guess I jumped the gun the other day when I was WISHING it would be easier. I guess the hardest part is this....she gets the chemo every 10 days, but she also has to meet counts every 10 days (That ANC number has to be up to 750, i think). Normally we only meet counts at the end of each month. So this means we could have 2, 3, 4, 7 day delays all through this 8 week course. And it also means we will NEVER know when chemo day is gonna be until the day before when she gets her finger pricked. ..which makes it really really hard to plan for help for the other kiddos. So we are now re-naming this phase to be the "really fly by the seat of your pants" phase. God help us to get through it.

One more thing: her ANC is down to 290. This means we are back in the bubble. No more school until it climbs a little higher. But she is still feeling fairly good.

Last but not least, I wanted to mention an event we have coming up. I really wanted to invite anyone from Ally's Army to attend. On February 20, the NCAA does a Coaches vs. Cancer type event...all across the United States at basketball games to honor those fighting/surviving/and even lost to cancer. The Wright State University women's team has chosen to honor our girl Ally. They will be recognizing her (I think at halftime) and presenting her with a special pink ball. I thought it would be very cool and supportive if she had some friends/family there in the crowd to cheer her on. She is a bit nervous about it. I want to make her some Ally's Army signs and show support, etc. So if you are interested....it is Feb 20 at 3pm at the Nutter Center. The games are not very crowded so I am sure we could all sit together. It is just another way we can show her how proud we are of her strength and for making it through this!!!!

Keeping my fingers crossed and my prayers going that I make it out of here on Friday morning!!

Still doing good

Although I have not posted lately, we are still doing good! I guess no news is good news. I mentioned that she was doing well last week, and then we found out she needed a bag of platelets. We ended up spending about six hours at the hospital on Friday because Dr B decided Ally needed blood too. So first, the bag of platelets, then the bag of blood. It takes a long time! Usually when she needs blood she feels pretty yucky, but this time she really did not. But, as a consequence, once she got the blood she felt even better! You can really see the color come back to her face once they do this.

Friday night had been designated as "boys night" and a group of friends (all male) went to the Nutter Center to see the monster truck show. Which both of my boys absolutely loved! Who knew that could be so fun. So the girls decided to go to our local Mexican restaurant and then just hang out. I was quite surprised when the girls decided to make up their own dance routine and Ally actually participated!! She always just watches when they do this. So I had to snap a few pictures of the stars Kate, Madison, and Ally. It made me so happy that she did this.

Saturday was another huge deal for us (remember: she is like a baby and we are always celebrating her small "firsts" and such). It was our friend Bob Winger's birthday and everyone was getting pizza and going bowling. Jerad and I debated this throughout the week...never wanting to expose her to germs, but yet still wanting her (and us) to have a bit of a life. On Friday, we found out that her ANC was 500, which is pretty high, so we let her go. I really didn't think she would want to bowl, because I thought her port site might kinda be right in the way of the bowling motion. But she did it and did it well and had a great time. All of this definitely wore her out, but seeing her acting like a normal child is so good for all of us.

Here is Evan and his buddy Sam. Sam is like the brother Evan doesn't have!

Even Miss Carly participated in bowling and she loved it!

So, of course, we have had some good times along this eight month long journey that we have been on. But normally, she is feeling this good when she is on a delay from chemo. For instance, we have seen peeks of this behavior when she hasn't had chemo for 10-14-18 days or whatever it is. But Ally got two pretty strong chemos last Monday, and is still acting this good. And when this happens, it makes four other people's lives so much easier: Janel, Jerad, Evan, and Carly. Because she fights the hardest, but we are all affected by this disease and we all live it right with her.

On Tuesday, she will get her last chemo in a 50+ day phase called Delayed Intensification. It has been a rough phase, but Tuesday will be the final push of the round. Then she will begin another 50+ phase called Interim Maintenance. I am liking the sound of it already. Maintenance. Not quite there yet, but I think this phase might be just a little lighter. I hope this is true anyway.

And I have decided to do something really crazy and pretty spontaneous for me at this time. I am heading to Florida for the weekend...leaving Friday morning. My Dad just bought a place down there, and he is wanting a little bit of help from my sister and I to decorate, organize, etc....a woman's touch maybe. Of course I owe thanks to my awesome husband for encouraging me to go and get a break from all the madness here. He knows that I have really needed a mental break from all of this and to escape from the bubble. I also owe thanks to a couple of friends who are helping me out with the kids so that I can go. I can help down there all day and be perfectly happy. But, I am thinking he might give me a little break to sit in the sun too. Now I am just praying, praying, praying that it all works out...because we all know that Ally has a bit of a problem with getting sick for any and all important, big things in our life.

Hoping for another good week. I hope you have one too.

Back to CMC

Just a quick note. We are heading to the hospital again tomorrow. Bummer. She needs platelets (they were only 23). One of these chemos is just eating them up because she just got them! I am picturing a little pac-man guy in her body eating platelets. She is also quite close to needed a blood tranfusion (she is 8.2 and they transfuse at 8) They are going to test her again in the morning and possibly do that too. If she needs two transfusions, this could amount to a very long day. Of course, I found all of this out at 4pm this afternoon and did a little freaking out session while trying to arrange everyone's day. Not one clinic visit this week, but two. We have definitely had more, but still would rather stick to one.

Ally seems to be doing well. Had a full day at school and was quite happy about it all. She had dinner with her best friend Madison tonight, which was quite a treat for her. She did have a bit of a crying meltdown at bedtime and was complaining of headace. This could mean she is symptomatic and needing the red blood transfusion. We will see.

By the way, thanks to all of you that donate blood and even more thanks to those of you that donate platelets (takes way longer to do that). I keep getting my reminder call from the Community Blood Center and I have to get back there and help replenish the supply that we are using. Someday, someday, when I have more time. Maybe I can even get my name on one of those plaques. I have found many ways that I can volunteer myself in a few years. Now I just need to get there.