Sunday, January 31, 2010

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 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.

Saturday, January 30, 2010

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!

Thursday, January 28, 2010

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 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.

Wednesday, January 27, 2010

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 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!!

Tuesday, January 26, 2010

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. 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 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!!

Sunday, January 24, 2010

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.

Thursday, January 21, 2010

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.

Wednesday, January 20, 2010

Dare I write it

Dare I say it. I am almost scared to write it. Really. Every time I do it backfires on me. But here goes: We are really really having a wonderful week thus far. It is almost normal again, short of a few minor bellyaches or medicine reminders. Ally did wonderfully with going back to school. As I mentioned before, she was very hesitant. I worked out a deal with her and let her choose what she thought was fair as far as going. I wanted her to have some say in the deal. It was something like 2 full days, and then 2 days leaving right after lunch because they go to PE and she can't participate anyway. (and a hospital day thrown in). Tuesday, when I picked her up early, she was all smiles. Telling me about an awesome book that she got at the library and her friend Sachi got to sit in with her for both morning and afternoon recess. Just really happy. Then today, much to our surprise, she was so excited to go to school. Almost giddy. Well, actually, GIDDY. She had a little bellyache but was still so excited. The absolute highlight of her day (and maybe her year) was when the principal called her down to her office to help her with a project. She said "Mom, I got to type up a letter about collecting supplies for pets in need. And the whole school is gonna get the letter! And tomorrow we are doing the posters....oh yea, and the principal's daughter is going to be my sub tomorrow and I LOVE HER"

Seriously. Seriously. I could just weep I was so happy. Because all of a sudden she is just walking around the house singing, acting all silly, playing with friends etc. It is such a difference. And I think just getting her out of here for just a couple days (and away from me) has improved her mental state so so much. Because as much as this disease is physical, and it is very much so, it takes a mental toll too. I don't think people realize that so much. But the doctors always tell me...send her to school. If at all possible, send her to school. She can't forget how to live. And then they remind me that most of her illnesses come from "within" her body anyway.

It is still scary. I am still nervous about her picking something up. Today there was only a handful of kids out sick in the whole school, so I felt pretty safe. I am just always weighing options...balancing things in my mind....and ultimately trying to do what is best for her. Both physically and mentally. Sometimes she tries to push me...well a lot of times...she asked for a popsicle for breakfast yesterday. Uh, NO. And then she asked for a root beer when she got home from school today. And I had to pull out the "Allison, sick or not sick, we do not drink pop around here on a regular day" Sometimes I give in to her little whims, sometimes I do not.

I do hope it continues. I am fairly certain that her counts are going to go down and next week she could feel cruddy again. But for now, I choose to live in the NOW.

Although we are having this great week with our daughter...nearly nine months into our thoughts continue to be with Cory as he battles through his head injury. Still in a coma as of today. Jerad and I sit here and think it strange that we are the ones sitting home and someone else is standing by their child in the hospital. I really feel guilty about it. Because I know what it is is like and here I am just carrying on with an (almost) normal week. It seems not fair. So I just do what I can do and pray for him constantly. I hope you will too. His Dad did send me that picture I mentioned the other day. Here he is, still representing Ally's Army and showing the world how strong he really is.
I read this in my devotional book tonight and it seemed so relevant. "Sorrow makes us move more slowly and considerately and examine our motives and attitudes. It opens within us the capacities of the heavenly life, and it makes us willing to set our capacities afloat on a limitless sea of service for God and for others.....Sorrow will reveal hidden depths within, which were never before known or suspected...It takes sorrow to expand and deepen the soul"

Praying for them both everyday. And all of the other kids who are part of our hospital family and who are near and dear to our heart. Amanda, Alivia, Katie, Jackie, Lincoln, Maggie, Dave, Braden, Skye, Tori, and Bonnie. Livestrong.

Monday, January 18, 2010

Ally's Army Bracelet...

The day is done. The shots are done. They were not pretty, at all, even bringing me to tears today. (Wimpy Mom syndrome.) For some reason, Ally was quite nervous today. We got to the clinic and within about 45 minutes she was accessed and the chemo was already up there. This usually takes about two hours! So a new record for us. They mumbled something about there being a new pharmacist. We now love her even though we don't even see her! Anyway, Ally was agitated about getting her port accessed...sort of slapping the nurses hands away as they tried to do it. That fiesty girl. So I kinda suspected we were gonna be in trouble with the leg shots. And we were. She just got herself all upset...again slapping at one of the nurses to the point where the nurse actually had to say something to her. UGH. She is not usually like that, but today she was just in one of those moods I guess. She kept wanting to count to three, but then just kept restarting at 1, crying all the while and just getting more upset. So finally I said to the nurse that the prolonging by her was just making the situation worse. I hurled myself on her upper body and covered those slapping hands and the nurses did their thing. It resulted in crying and screaming, but within minutes was over and we were on to doing a puzzle like nothing happened. We had to wait around for a while to make sure she did not have a reaction...and then we were outta there in our wheelchair. Her legs were hurting, but we were done with leg shots for at least a couple more weeks.

Her platelets were low, so she has to get tested again on Thursday with the thought of transfusing on Friday, but I am hoping that we don't have to. Something is eating up her platelets and I wish it would just stop. Dr. B looked her over and thought she looked great...lungs sounded great. She even told him her really big news of the week: that she is now eating salad. After never before touching it with a ten foot pole, she is now eating it. It only took 8 years, but I guess it has to start sometime. We also found out that her next cycle, starting here in two weeks, will be timed out every 10 days instead of every week. A tiny bit better, I thought.

After chemo, Ally was rewarded with the best treat ever today: six of her cousins (including the twin babies) from Columbus were sitting at her house ready to play with her when she got back from the hospital. Thanks to the Barnetts and Colombinis for making the drive and making our MLK day so much better than it could have been. (and for taking care of C and E while I was gone!)

We have mulled over going back to school or not. This is my huge stresser decision for me. If you saw her and how withdrawn and dependent she has become, you would understand why it is best for her to go to school. But putting her into the germ factory, not so good either. She DOES NOT want to go. I asked her why and she says she doesn't want to leave me and just plain doesn't want to go to school. Really, a lot of normal kids don't want to go to school either. We have talked to her about going when her counts are good and when she is feeling good. And not going if she feels bad. And we came up with a bit of a compromise so that she feels like she has some control over the situation. (few half days, few full days) So we are gonna try it, AGAIN....she hasn't gone in a month, and this could all get thrown out the window next week if her counts are too low. The next phase should be a little easier on her, so I am still hoping. I can always hope. But this does cause me some major graying of the hair.

Last, but not least, I want to share an extremely special Ally's Army story with you. I mentioned the other day....about our friend's son who was in a car accident on Friday. He is 17. Well tonight I learned a story which I will never forget. He was in this horrific accident and had to be careflighted to the hospital. When he got there they cut off all his clothes and such and quickly sent him into two major surgeries. For the last few days, he has been in a coma and also has been restrained at his hands. They said today, the medical team was taking him out of the restraints and looked down and saw something orange peeking through. It was his Ally's Army bracelet that he faithfully wears. It had made it through the whole ordeal and his Mom took it as a good sign. (when Mom's are in trouble with their kids of any kind, I think we all look for signs) I believe his Dad even got a picture of it for me, and if I get it I will share it with you. I asked if I was allowed to share the story, because it so touched my heart and hopefully it will for you too. Two kids, facing something they shouldn't have to I want to wear a bracelet in his honor as he fights his way back to health too.

Sunday, January 17, 2010


Grateful. I am feeling very grateful for the last few days that were so GOOD for us. The good days don't come all that often, but when they do it gives us just a little taste of what life will be like for us when Ally crosses the finish line and this is all behind us. It is truly amazing how much I can appreciate very simple things. I guess that is one of my lessons that I have learned in God's plan for me. Today Ally did nothing spectacular, but she enjoyed a normal day of church, playing with her cousins Aly and Katelyn, playing with her friends Madison and Caulin, rooting on our Cowboys (boo), and talking to her Aunt Amanda and her grandparents on our new webcam. (great invention) I know it sounds boring, but to her it was so much better than sitting in the same position all day doing a craft. I was quite happy when I saw Ally wrestling with her friends on the floor. She is always so careful (don't touch her port!) and so tentative to do play type activities. She has quite forgotten how to do most normal kids thing and I sadly witness that 90% of the time. Again, how amazing it is that these little things can make my day.

We have been having fun this weekend pretending we are on vacation in Florida! (my Dad just left for there) We can't REALLY go on a vacation, so Jerad decided we would pretend. We went to our local Mexican restaurant for dinner and Jerad tells me I have to get a Pina Colada. We are on vacation. Then the kids HAD to get dessert. And then they had to sleep in the same bed. Jerad finally drew the line. He was telling them it was time to go to bed and that they had been up too late the night before. And Evan says, but Dad we are on vacation???? Smartie pants.

I continue to be amazed by all of the kind gestures from various different people. Lately, when I run into people, they are always offering up help. I have people that text me/email me/call me repeatedly offering help. And I know they mean it because they are so darned persistent. I almost always say no, but I do put it in my back pocket because you just never know. So even if I don't take you up on your offer, know that I appreciate it...and that someday I just might.
Another example came today...right before kickoff in our Cowboys game. The doorbell rang and a very loyal blog reader and friend had made Evan a beautiful Dallas Cowboys blanket. Just beautiful and perfect for him. He smiled so big. I mean, after all, every present that ever comes to our door is for his sister. I walked into the room a few minutes later and he was just sitting under the blanket smiling. So happy. When I tucked him in tonight he wanted the blanket. So thank you Gaghi, you made a little boys day.
Ally and I are headed down to the hospital in the morning. She is getting the dreaded leg shots (PEG) and they will also access her port and give her Vincristin. I am hoping we can escape another lengthy blood transfusion. This time I am taking her by myself, no Jerad to help me hold her down. Usually we each take a side of her and then two nurses each take a leg. But she is getting braver and braver and I think she will do fine. Usually she can't walk afterwards, these shots are big time and straight into her muscles. She has already requested that I carry her which I replied NO WAY can I carry you, but I can get you a wheelchair! I think almost all of her cousins are coming down from Columbus for the day, so she will have that reward waiting for her when she gets home. Oh, and she already requested a Krispy Kreme donut too.

I have heard this a multitude of times, so not trying to be cliche, but ....Enjoy the little things, because someday they might be the big things. And that is so true for us.

Saturday, January 16, 2010

Still going strong.

Just a quick update. Ally is really doing well the last couple days. As I have said on here repeatedly, it just amazes me how once she starts bouncing back she really bounces back. She is really feeling good. Yesterday, she was actually chasing her brother around the house. To see her run, can just make me so happy. I knew she was feeling good when I saw that. She has done two days of tutoring that amounted to three days of school. Another plus. She also went next door to the Finn's house and played with several of the neighborhood kids over there. And she had a wonderful time. It is always good to get her out of the confines of these walls. In fact, we are getting ready to take her out to dinner (just a quick one). We are grateful for these good days.

All day today I have spent praying for some friends of ours whose son was seriously injured in a car accident. I just keep thinking about them every minute and have spent a good part of the day crying. Life is so not fair sometimes. I don't know what it is like to experience a sudden accident like that, but I do know what it feels like to face the fears and face the doctors and try to live on adrenaline and how your life can change in an instant. Anytime a child is involved it is just so hard. Please say some extra prayers for them as you pray for all the kids tonight. I've been holding my kids especially close today.

Thursday, January 14, 2010

Hurdle. Crossed.

I think we have successfully crossed another hurdle. Ally survived the entire day without a headache. No vicodin, no mention of head pain. It was finally just a normal day around here. I am quite thankful that (I think) we are past that hurdle. God knows we probably have more coming, but we could use a bit a least until Monday when she has to go back in for chemo.

Her day was quite busy too. She went down to the Wingers house for a couple hours in the morning while I did some of my accounting work. She then did almost an hour and a half of tutoring with Mrs. Brower, played with her sister, made some dessert, built some more of her lego house, did her Sunday school homework, and then played with her Dad. We never even turned on the TV...ALL DAY. So that makes me feel better. We have so many, so many days with zero productivity that every once in a while we deserve a productive one.

Maybe we will just have a regular weekend at home. That would make me happy.

Thanks for following our story. Here I thought that people were falling off on reading the blog. I just looked up my Google analytics and we are getting over 400 visitors a day. Every single day 400 people are checking us out. So far, there have been 92,000 pages viewed by well over a thousand people....including every single state in the US. I am amazed and humbled by the support. Some day our girl will be too.

A lot of prayers were answered and we will continue to be faithful that HE will lead us through.

Wednesday, January 13, 2010

Maybe a turn

We may have turned the corner in the headache department. She woke up this morning and immediately starting playing with Carly and her doctor kit. I was sitting there watching and silently thinking what in the world is going on. I didn't mention the headache for about 45 minutes. I certainly did not want to remind her of it. She kept playing. (she hasn't really played in a long long time) So then, I finally had to mention it. I said "you don't have a headache right now, do you?" And she said no and that she felt fine.

Okay. Wow. Good. Great. Shortly after that she had to go to the hospital for what we thought was a blood transfusion. I was a little worried about this...because her hemoglobin was 10 on Sunday and they called and told me it was 7 on Tuesday. That is a very large drop in a very short time. But, we have to do what we have to do. But when they drew blood today, she was back at a it was a mistake. Not sure how it happened, it could have been a diluted blood sample or something. I personally asked them to test her because I thought she had needed platelets. She had some pinpoint bruising (a tell tale sign for us leukemia parents). And in fact, she did! She needed platelets instead. The reading on that was also wrong yesterday, but today she was dangerously low (18) so they gave her a bag of those. She also got her last dose of ARA-C chemo and was then de-accessed. She did really good through all of it. And the doctors both felt she looked good and they weren't overly concerned with the headache. Of course at this point it was subsiding anyway. They also thought her lungs sounded better.

I learned a valuable lesson today too. Don't take a 2 year old with you to a (very) long clinic visit. Actually, Ally was there 5 hours today. Carly and I were there for 3 of the hours (Jerad did the rest) And Carly really is a very very good girl. But you just can't expect a 2 year old to sit through a three hour doctors appointment. It's just torture for all parties involved. I was physically exhausted by the end of it. But now I know!

As soon as we got home, about 4pm, Ally had a headache. Which made me sad. She asked for the Vicodin and I gave it to her. She went back to the dark room, but then later she did go with us to have dinner with my Dad tonight and she was fine up there. So, I am hoping it is improvement and that we have turned the corner.

At one point today, I had this physical sensation that my heart felt a little lighter. I actually felt it. My heart has been so heavy lately. And I was thinking...why do I feel just a little better? But I realized it was because she had just given me a little smile. And then I looked out the window and the sun was shining. Those two things can make me feel so much better.

So here is hoping tomorrow is even a little brighter.

PS Thanks to all of you who are giving advice on spinal headaches. Something new for us, but I will take any knowledge that I can get. I have talked to quite a few of you that have experienced this pain and it sounds awful. It is awful.

Tuesday, January 12, 2010

It is sorta like a broken record.

Hello from our merry-go-round of life here at the Barnett house. I say that because we just keep going round and round but we are not getting anywhere. Ally is still suffering from a piercing headache and we are pretty much keeping her on vicodin around the clock. It does provide her some relief, but it also wears off before the next round is due. We have pretty much been camping out in my bedroom....they suggested keeping her in the dark room to try to alleviate some of the pain. So that is what we are doing. No one knows why she is having this headache, but some suspect that it is because of the spinal. I guess you can get a pretty nasty spinal headache after one of the procedures. I would not be surprised if that is the cause because of all her vomiting, etc after it and her wanting to sit up. Plus her hemoglobin was low at the time, she was starting a fever, etc The whole thing was just NOT GOOD. I feel like we are still paying for it almost a week later. Of course, anytime there is a headache Jerad and I get a little panicky. I worry about it spreading to her brain. That is where leukemia cells like to hide (thus all the spinal taps) At this exact time last year, that is exactly what happened to my mom. We have been doing some serious praying.

Poor Ally. The girl is down. I guess I could expect no less given that she has suffered a headache for so so long. I know what I would feel like if I had a headache that long. I do feel like her spirits are down too. It is depressing..for me, for her, for all of us. If Evan watches one more TV show or plays one more video game...well, at least he is going to school. I did just call a friend of hers to stop by and see her. I think a visit or two from friends would cheer her up, get her mind off of it. There is only so much that her mother can do. I can attend to her basic needs, but she has other needs too and is currently getting little or no interaction from anyone.

She did start back up on the chemo yesterday. And today. I can't tell you how hard it is to watch that chemo going into her body knowing that she already feels terrible. What a struggle. I also noticed some pinpoint bruises on her neck. This usually means that she needs platelets. So they did a blood draw this afternoon, and I just found out she needs another blood transfusion tomorrow. This stuff is really hitting her. That is two transfusions in six days. After that, we go back in for two different kinds of chemo on Monday. Which I just realized is MLK day. And Jerad has a meeting. And Carly also has a doctors appt at the same time. And Evan will be home from school. How to manage? I don't know yet.

I am working on a schedule to have a few close friends come sit with Ally for a little bit at a time. People who she is comfortable with. I have always had help on the days we go to the hospital, but most other days I try to manage on my own. I think this might be good for both of allow me to get some of the mountains of things piling up done and to give her a change of scenery. Or at least someone else to talk to. My small accounting job gets rather large in January every year when the year flips and I have all kinds of year end things and taxes to do. Maybe this way I won't be scrambling every single night to cram it all in and/or seeing the inside of Wal-Mart at 11pm at night (not pretty and actually scary). We will see how it goes.

I do know one thing. Someday when I am all past this, I am going to pay it forward. I am going to make it my personal mission to help out people who are facing a life-changing experience. There is such a need out there and those of us who have been through it need to stick together. Contrary to what the patient might think, there are a ton of other things to do to keep a family going. I can't possibly scratch backs ALL day (but most of it).

Here is my hope: that the blood transfusion perks Ally up and makes her feel better again. That the cancer is gone. Forever. And that the rest of us keep our strength up to keep plowing ahead. One day at a time.

Sunday, January 10, 2010

Fever Day 4

We are still here at home. Day 4 of a fever has persisted. Ally has been quite miserable for most of the day. She really can't get out of the horizontal position because her head hurts so bad when she does. We have been trying different things they suggest for the headaches including keeping her in a dark room and also giving her caffeine. The doctor just called and told her to try Vicodin. I just got it in make her gag quite a bit getting it down. But it is now in her system and I hope it works. I feel so sorry for her and again so helpless.

The home health nurse came and tested her blood again today. Her ANC has actually shot up to 470 now. What is actually different for us this time is that Ally typically gets these fevers when her counts are on their way down...this time her counts are going up. So I guess this gives more credence to the fact that she just has a virus like any other kid would get. This was the doctor's guess....since nothing showed up on her blood cultures. So with a virus, we just have to give it time. As is the case with anyone, antibiotics will not do anything to kill a virus. It just has to run its course. (However, she is still getting the antibiotics to combat the bit of bronchitis in her lungs.)

I have to say after all our education and putting the fear of God into us about fevers, it is quite disconcerting to be sitting here with a fever and NOT be in the hospital. Trust me, I don't WANT to be in the hospital. No I don't. But it makes me a little uneasy to be doing it alone too. I am always scared we are missing something....and what if it is not just a virus. Mostly, I just want her to feel better. She is a pretty sick girl right now.

I will just keep my faith and pray that the fever will be gone for good by tomorrow. They are wanting to start her chemo back up on Monday. She will also have it Tuesday, Wednesday, and Friday. She will need strength to be handed all that chemo in one week and I am just not sure she has it. But we have to keep marching on against the leukemia cells. Hopefully the week turns out better than I am envisioning it. My husband would argue with me on this....but sometimes it is better to expect the worst and then be pleasantly surprised if it goes better than planned.

In our world of uncertainty right now, one thing is certain. The Cowboys won and they looked quite awesome doing it. It has been a long 13 years since they have done it!

Saturday, January 9, 2010

Cowboys Eagles, at kickoff

Here we are. Cowboys vs Eagles. I am taking this picture right at kickoff.
Yes, Ally made it home. However, this morning (and last night) she had a fever. Jerad told me and it took everything I had to not burst into tears. I was certain they would keep her another night. Then Dr B did rounds this morning and felt comfortable enough to send her home, even with the fever. Who knew?!? I can never tell what they are gonna do. The fever could be caused by her actual chemo (it is a side effect of ARA-C) or she could have a virus. But her blood cultures are still showing no infections and her ANC was up to 260. So he let her go. It is a little scary for me to have her here with a fever. The fever was just 102 a bit ago and she slept most of the evening. God help us get through this....I do feel fairly comfortable with my nursing skills and we are only 20 minutes away from the hospital if we should have to go back. (Please NO)

I am feeling a few people who are not so happy that we are Cowboys fans. It is quite funny that we both are. When I was a little girl, my Dad instilled a love of sports in me. He never had any boys, but that didn't matter to him. We would sit and watch football and he would teach me all kinds of stuff. I can remember winning his office pools as a very young girl. I can also remember lining my smurfs up to watch a lot of the games (NERD). Anyway, while other girls had pink bedrooms with unicorns or whatever I had my Dallas Cowboys bedroom. Tony Dorsett being my hero at the time. And then there was Jerad growing up in little Junction City, OH but also loving the Cowboys. He was way infatuated with Bill Bates. In fact, if Ally was born a boy, he wanted her name to be Bill Bates Barnett. Thank goodness we escaped that one. So once we started dating we realized we had one really good thing in common! And instead of seeing hearts when we fell in love, we saw STARS. Hahahahahahahah.

The week Ally was diagnosed, our friend Bob Grant was in Dallas. He brought Ally back that Romo jersey that she is wearing in the picture. She even had it at the hospital today. Our little boy Ally.

I do know my brother-in-law Mike is on our side with the Cowboy love. He just got a piece of the old stadium turf for Christmas!

Alright, well gotta get back to my 'boys. Hoping for an uneventful night and then a home health nurse is coming in the morn to give Miss A more antibiotics and take some more blood. She may start back to the ARA-C as early as Monday. (they held her chemo Fri/Sat/Sun when she got sick)

Friday, January 8, 2010

A little better

Ally made a turnaround today. I can tell she feels better and some of the people who saw her yesterday and then today were a bit shocked. Yesterday, if she was awake, she was pretty much crying in misery. Today, was almost normal...well as normal as it can be in the hospital setting. She did make me push her in circles all around the fourth floor today in her wheelchair. For about an hour and half straight. She was going stir crazy and I got some exercise, so its all good. I think this girl is gonna turn out to be a Mamaw just like her mother. She always wants to know what is going on and meet some new people. I swear someday when she is well she is gonna be the ambassador for that place.

She still has the bronchitis....they said it would probably take 3-5 days to see improvement there. It will not correct itself overnight and that is fine. Her chest xray showed some streaking, consistent with a virus, but then again she doesn't have any white blood cells to show up on an not sure how much value I give it. But the good news is that once her fever spiked at 3pm yesterday it never came back. It is so weird because they warn me that she could spike a fever with a blood transfusion....and she did, of course, it is Ally here afterall. But then it goes right away when she is done getting the transfusion...but it still "counts" as a fever and still requires a 48 hour admittance. Its confusing. Lots of this stuff is even confusing to me. Like why was her ANC at 910 and then a mere 7 days later it is sitting at 60? Usually it takes weeks for that to happen. No one knows. And lots of people ask me questions and I just have to say I don't know the answer. And really, no one knows the answers. That is what most people don't understand. The doctors don't have all the answers. They don't have all the solutions. They just do the best that they can with what they have to work with. I can usually accept that.

One thing that is new for us...they tested Ally's immunity level. I think this was called her immunoglobins. It came back surprise there. So they gave her this infusion called IVIG (again, not sure what this is)...but the medicine is meant to boost her immunity. It is supposed to be good for kids who are in school, etc and can protect them so they don't catch every illness that comes around the corner. I am asking myself...why haven't they done this all along? Wouldn't it be beneficial to all these kids? I don't know....need to ask. And then someone great would that be if they bottled that up and sold it and we could give it to all the kids at school??? I guess then it probably wouldn't work anymore. Anyway, I am having hopes that it helps our girl.

So....nothing grew in her blood cultures, her ANC went from 60 to 80, she hasn't had another fever, she is eating and drinking, she is no longer if all continues as is then Dr B said she could go home tomorrow. PLEASE PLEASE let this be the case. Ally needs to be home and plus....Jerad and I would love to sit in our own house together tomorrow night and watch our Cowboys in the playoffs. I'm going to get my jersey out now just in case.

Thursday, January 7, 2010

Not a good day....

We are not having a good day. Seems like everything is going wrong. So where do I begin....

When we got here her hemoglobin was 6. A little on the dangerously low side...they transfuse when it drops below 8. I had no idea thought that it would be that low. So she is getting a blood transfusion.

She has some bronchitis in her lungs. Some crackling. Not a huge deal BUT ....her ANC is already down to 60. The cold/cough is making her miserable. The doctor is starting some zithromax to try to help.

Her spinal did not go very well. Yelling, crying...they had to give her more meds. Which makes her more upset actually. She immediately starting vomiting up all the phelgm (she is not allowed food) But she was not allowed to sit up, she has to remain laying down after the spinal. Throwing up and laying down don't go very well together. She was begging and crying to be able to sit up, but we couldn't let her. This throwing up spell lasted about 45 minutes.

She has started a fever. Again. it keeps going up and down, but at last check it was 101.8...which means that she is now being admitted and they will start her on IV antibiotics also. She just keeps crying that she wants to go home. It is sad. She hasn't been this miserable in a long long time.

And it is snowing like crazy now. And we are both here with no overnight bag or anything. It seems like it would be much work to try to get home, pack a bag, get our other kids, and get the stuff back here. So we are considering just roughing it with the clothes on our backs. Or maybe sending Jerad out into the elements. At least Ally has her Bobo...but she did throw up all over her blanket.

No matter what...we have a sick girl on her hands and I just ask that you pray that she feels better very soon.

Wednesday, January 6, 2010

Spinal Tap Eve

We have not been having a good week. Not a huge surprise, but frustrating nonetheless. Ally has had a pretty bad cough all week. Putting this on top of her stomach pains, headaches, and other general ailments and it is making it rougher on all of us. She is still gimping around pretty good too...she has trouble getting up and down the stairs, in/out of the car, in/out of the bathtub, etc. She has only made it to school for that one hour or so on Monday....she wasn't feeling well and then the school called to inform me that the stomach flu is running rampant there. I certainly don't need that right now, so we just arranged for her tutor to come today and also on Friday. We are spending tomorrow at the hospital.

She is due in to CMC at 8am tomorrow morning. She has yet another spinal tap on her plate. She is also starting back on the 4 day cycle of ARA-C, so her port will remain accessed and they will come to our house for chemo on Fri/Sat/Sun. I am feeling about 90% certain she will need a blood transfusion as well. I believe this is the source of her headaches and she is also constantly cold. I think it is going to be a pretty long day again, and we are due for a snowstorm. I love the excited...but I would also like to get home safely from the hospital!

I was talking to someone the other day who's son had gotten a spinal tap and she told me that they did not go in to watch. She asked me if I did. I told her sure enough, I have probably now witnessed about 15 spinal taps. All of them equally nerve-wracking and filled with prayers as they insert the large needle into Ally's spine. You would think it gets easier, but every time I get nervous. Every time she comes out of the anesthesia it seems a little different, and there are always alarms going off on her monitors. Her heartrate is too high, her blood pressure is too high, her respirations are too low....agggghhhhh. The alarms just constantly go off and I think I stand about six inches from her bed with my fists clenched for about two hours. It wears me out. And then a few hours later...the doctor comes in with her report..."the spinal fluid was clear of cancer" and then I really breathe a sigh of relief. I always feel like we are just one minute away from bad news again...I think it is because I am scared of my bad luck streak. But I try, I TRY, to always stay positive.

This journey is filled with much stress and lots of prayers. That much is evident. I feel constantly on edge...checking over every last skin tab on her, noting every symptom, hoping that the doctors never miss anything. I spend all day trying to make her more comfortable, making sure she eats, trying to occupy her mind, and trying to protect her from god knows what. I faithfully read LOTS of other blogs of people in the same situation...trying to educate myself and make sure that I am not missing something that someone else has noticed with their child.

To be quite honest, I think I am finally wearing out. I added it up today. Eight months we have been battling this. It feels like eight years. I always try not to look day at a time...but lately I have been looking ahead. I am thinking it is not such a good idea. But we really only have four months left. The really crappy part is remembering that when Ally was originally diagnosed, this "intense chemo" was only supposed to be six months. We would have been thru it! Done! But then her MRD number came back bad, and now here we are. We have to fight longer.

So I do feel worn out. I have given up pretty much everything in my life for this. My job is pretty much nonexistent (except for a few late nights at the computer)...I no longer volunteer at my kids school...I purposely haven't signed Evan or Carly up for anything as far as extra activities....I have gone out with my friends twice in the last 3 months...I haven't even gotten my haircut since September. It gets old and I feel trapped in here...and now it is the dead of winter and I will go days without seeing another adult face except for Jerad. These are just the effects that it has personally had on me...not even mentioning what it has done to my poor Ally or the rest of my family. I am really really trying to stay strong, but I just get so mad at this leukemia and all it has taken away from my family. I really long for simple things like seeing my daughter walk home from the busstop, or hopping in the car to go do something, and not having everything hinge on our current medical situation. I can remember being frustrated if my kids were sick for a week or two. And now I am going on my eighth month and ... well I guess that is enough venting for now. It is what it is and I have promised myself I will be honest on the blog. Someday I will look back and remember these days. Not happily, but I will remember.

If you are still here, after eight months, thanks for continuing to follow our story. I know the interest in it has waned and really it does seem to be the same story...over and over again. If you are still reading after eight months of the fight, then you have truly earned a badge that says Ally's Army! Quite frankly, I am running out of blog material! Or at least interesting blog material anyway. Someday I will be writing about FUN things that we are doing again or maybe our lives will be so boring there will be nothing to write about anymore. Normal is good. Normal is good. 90% of the people reading this are sitting happily inside of normal. Someday that will be me.

Monday, January 4, 2010

School, not so much

Ally barely got to school and about 1 1/2 hours later she was calling me crying. Belly ache, headache...I kinda think a little bit of homesickness too after two weeks off. She does have a pretty good cough going too. I barely had time to get Evan dressed, fed and out to school and I had to go get her. Of course, once she got home she was fine. We spent most of the day cleaning her disaster of a room and she even played with a friend for a little bit. I never know what to do about school and it stresses me out. Every time the phone rings and she is gone I just jump. I slept fine all of Christmas break (except I went to bed very late)...but now last night I am up half the night and anxious again. I am hoping that she goes for a little while tomorrow anyway....this way we can somehow get groceries into the house. I am lacking and don't ever like to take here there. Oh yea, and it would be nice if she did a little learning too. Her brain has been on a long vacation.

Not much other news today. I am sitting here listening to her coughing in her bedroom. For most kids, it is just a cold...but for her it can turn into much worse. Scary. Carly also has a sinus infection and cough (and is on antibiotic) and Evan is holding up his fair share with just a bit of a cough. I am now just wishing for three well kids!!!

Sunday, January 3, 2010

Back to School

We are here and ready to start the new week. Ally finished up day 4 (of 4) of her "at home" chemo. It is called ARA-C. We are lucky because a nurse comes to our house and gives it to Ally right in the family room. No travelling required. Here is a picture of her getting it. As you can see, the nurse (Paulette) gets all done up in her chemo garb, for fear that it might squirt out and get on her. But there is Carly right on the other side. She was patting Ally's head and telling her to feel better. Carly doesn't really see all that much when it comes to Ally's care. I don't take her to the hospital for treatments because we really aren't supposed to. But she has seen a lot of finger pricks/blood draws in her day. And she has seen the home health nurses. And she is always very empathetic to her big sister. She offers to hold hands or sit right with her in the chair. She knows Ally always likes it if the nurse counts to three first. She will even play finger prick once in a while. She will grab my finger and then say "one two three" and poke me. She doesn't know any better. I am sure she thinks everyone does this sort of thing. But she is always very kind to her sister....except for the few times that she has ran into Ally's port while trying to give her a hug or something.
Ally is feeling pretty good. The last few days she has been battling headaches. This usually means that she will need a blood transfusion. Her hemoglobin was pretty low to start with, and that was before her chemo. So about 10 times a day Jerad and I ponder the question of whether she needs blood or not. We try to avoid unnecessary sticks, etc, so we are waiting it out a bit. We are hoping to get to Thursday and her planned hospital visit.
Dr B says that Ally should go back to school. At least for a couple weeks until her counts drop again. And/or until the flu starts running rampant in the schools. At this point, she will likely go back to the tutor. She is at the beginning of a round. Usually towards the end of the round is when her counts drop and her ANC hits zero. Like what happened on Christmas. So I guess our "riskier" weeks are towards the middle/end of January. It is quite hard to send her back. I feel some relief that there are no major events coming up (Halloween, Thanksgiving, and Christmas were always looming large). But I still feel a lot of stress because I am scared of what can happen if she would get sick. I will just continue to pray that God will put a hedge of protection around my girl. And then I will send her off.....
Happy new week to all of you!!

Saturday, January 2, 2010

Happy New Year. Welcome 2010

I love a New Year. This year, I triple triple love the New Year....I am quite glad to see 2009 pack its bag and get on outta here. I am welcoming 2010 with open arms. I have high hopes and a clean slate and I want to do some good things for my life and for my family. First and foremost, I am looking forward to the summer of 2010...this is when Ally should finish her "intense" chemotherapy and enter into a once-a-month chemo phase. I can clearly see that phase in my mind. I can see the summer and the lake and the pools and the watermelon and baseball. I can almost picture Ally riding her scooter again. Summer is good. We have to round the track and get there...and then of course keep running....but at a much slower pace after that. In the meantime, I have to try to remain positive and keep the constant fears out of my everyday life. We have to persevere and not let the stress of everything get to us. Managing fear....a huge part of my life now.
The last couple weeks have been extremely hard on me. Christmas prep is hard on lots of people, I know. It used to stress me out when everything was just normal. I always try to do everything just right, just perfect, just magical, etc....I am hard on myself. I don't think I went to bed before 1 am for the entire month of December. Every single day. It took a toll. Throw a Christmas Eve/Day hospital visit in there, and I could have collapsed under the stress. I felt like I was drowning a bit under the weight of it all. I still don't have everything put away, and in its appropriate spots. And I can cap off all of the stress by feeling such an empty spot in my heart this season for my Mom. I just yearn and yearn to have her back with me. But I have to move on, because the situation is just not changing. I must accept it, but I still don't think I have. I really haven't had time. So all of this results in me feeling crabby and stressed, and down on myself, etc. I am sure I am not the most fun to be around. But my family and my friends must cut me a little slack, because they are all still here with me.
But New Year, Clean Slate! I feel much better just having it here. Ask anyone who witnessed me punting things down the street at midnight on New Years Eve. My sister and I...we just kicked the year right on out of here. Last year, on New Years Day I started a project. I wanted to take one picture everyday of 2009. This was my first picture.

But how ironic is this picture now?? I was celebrating because I was so happy to be done with 2008...the year of cancer and of the Cleveland Clinic...the year I sat by my mom in the hospital for 61 days. 2009 was going to be a better year. But we all know now that it didn't happen that way. 2009 was filled with some unimaginable low points in my life. And yea, well that whole project came to a screeching halt on March 15 when my Mom left us.
Once again, I have very high hopes for the year. I want my girl to get well and go to school and do all things that eight year old girls should be allowed to do. I want my other two kids to get back to normalcy and having their Mom and Dad around a lot more. I want to continue on this journey of life by appreciating every little thing and making the most of the time we get each day. I will strengthen my faith and pray for those who need it most. I will push the fears down and put my faith in God and the medical team that cares for our Ally. And I will keep remembering the good times. I will continue as the leader of Ally's Army and try to make some more good come from something bad. We will try to raise more money, make more people aware of pediatric cancer, and try to make a difference.

So those are my thoughts on the New Year. Ally is doing quite well these days. She started her new round with the spinal tap and an entire days worth of chemo. The nurse has come to our house the last couple of days to give a little more chemo each day. She has another spinal on Thursday, and more chemo. I am praying this round does not give her a fever, but it is a side effect of this drug. So it wouldn't be a surprise if it did.

After being at the hospital from 7:30 am until 6pm on New Year's Eve, she still managed to stay up until midnight to ring in 2010. She was out on the porch banging on pots and pans with her friends. And I heard her laughing a lot, which I am convinced is the best sound a mother can ever hear. In the Barnett house, we have our own tradition of making a ball and dropping it from our second story as the clock ticks to 12. The kids love it.

Waiting for the ball to drop

Even Car-Car made it to midnight...

Happy New Year to you and yours. Better days are coming. I just know it.
Here is a video of the Barnett ball dropping....