Monday, June 29, 2009

3rd time to hospital in 5 days!

As you may have guessed, we had a night full of stomach aches and crying. Based on what the doctor had said, and our panicky minds kicking in, Jerad took Ally back down to see Dr. Broxson. The severe pain was just not letting up. He examined her and sent her for more x-rays and labwork. Her x-ray showed that her intestine has cleared and she is not as backed up as she was. (again, sorry for too much information. She is gonna hate me for this someday) So this was good, but kinda bad in a way because then there is not a concrete explanation for her pain. So the current diagnosis is that she has gotten too much Miralax, and the pain is caused by cramping. We have stopped that routine now and we are waiting to see. I was a little shocked to hear that Ally has lost almost 9 pounds in the first month. That is a lot of weight for a little girl...more than 10% of her body weight. She just isn't eating anymore and she looks pretty little to me. All that midnight snacking she was doing when she was taking the steriod has fallen by the wayside.

In the meantime, the doctor prescribed her to have as much activity as possible. This is crucial in helping everything. However, it is very difficult to get a girl who is tired and does not feel well to do much of anything. We had her walk halfway around the block when she got back from the hospital. Lots of crying, but we did it. She is especially whiny and non-compliant for Jerad and I, so we called on some of her army to help us out. Before dinner, her neighbor friends Madden and Regan came over and they just did a little sand art project on the front porch. When she is engaged in something, there is no crying! This lasted for about an hour. Then more resting and after dinner she was outside again. The weather is so perfect now..almost cool! So my friend Nicki had this awesome idea to have the kids in the neighborhood do a scavenger hunt. She made them a list and had Ally take pictures of everything as they found them. They walked around our big block this time, keeping her engaged and active. Jerad and I quietly disappeared for this, as she looked over at me once and I saw a look of crying come to her face. Ally loved this so so much. She asked to do another one. Then another. Now Nicki is talking about writing one to do at Fox Hill (my Dad's house), one for the baseball game Wednesday night, one at the playground, etc etc. Whatever works.
Finishing the scavenger hunt
Sno-cones for everyone afterwards, you may notice that her white seal Bobo is in almost every single picture on this blog. She never lets go of him. Do a where's waldo search, but for Bobo, and you will see it!
We are off to do the swim-a-thon in the morning. I mentioned this in a previous post. They are all swimming in honor of Ally to raise money for the Children's Medical Center. (Our choice) How humbling and kind of this wonderful team. I am praying we get some sleep tonight so we can be out the door pretty early for that. Really I just want some sleep.

I also had several people mention to me today that they would have gone bald if they had known we were doing it. So I may have to arrange another "go bald" party. I heard that my Dad went bald today too! Can't wait to see and post a picture of that.

Look at my lovely 124 loyal followers over on the side. Ally's Army is growing everyday. There are actually 900 people that have looked at the blog this month and almost 300 people do so every day! I was looking through some info and we now have people following her in 46 of the 50 states. Several from Canada, Australia, even Portugal. The prayers are coming from all over, and I will take whatever I can get. Thanks for all of the supportive comments and letting us know you care. It means so much.

Overwhelming

As promised, I am posting again. A quick post on Ally and then a longer one on our hair party. First of all, Ally. She is still not doing well. I hate to say it, but she just had horrible stomach pain all day. No luck with making it any better. The doctor told us if she was still in pain on Monday, we should call. So I am imagining we will be back down at the hospital tomorrow. It is just not right. She is suffering way too much. If the breeze blows by her the wrong way she is in complete tears. I am keeping this short, because who really wants to read about a sweet girl suffering, anyway? I had to work really hard just to get the few pictures/videos that I could today in between bouts of crying. So it looks all happy and cheery here, but let me assure you it is not.
With that said, I am in complete amazement at the wonderful act of kindness and love that I witnessed today. My heart was just completely filled with emotion today....I was crying off and on throughout the haircuts. Not because my daughter was losing her hair. No, I already have dealt with that and come to terms with it. I am not sure what the tears were for..joy..compassion..gratitude...but never have I felt such love for my friends (and Uncle Gavin). Remember how I keep mentioning my family of 13?? It is the Barnett 5, the Booher 4, and the Winger 4. Well, we are pretty much inseparable to the point that people think we are a little weird. (yes, I know you do) Well 8....EIGHT....8!!!!!!!!!!!! of the 13 are now bald just like Ally. And Ally's sweet Uncle Gavin walked up...shaved his head...no questions asked. He said if it brought her even one minute of happiness, it was worth it to him. Then Grandpa Booher (Larry's Dad) showed his support by doing it. Madison, one of the girls in the group, had a few inches chopped off of her hair. And then I hear through the grapevine that our personal trainer, Kevin, has also shaved his head in support. Jerad's parents even drove two hours from Junction City just to witness it, and they had just seen her yesterday. OVERWHELMING. OVERWHELMING, I tell ya. I am not exactly sure how to get my feelings across here...but you could feel the love flying around the air for our brave little girl. Here is a picture of all the courageous supporters. I hope you can see they painted the back of their heads with the words ALL 4 ALLY.

I am feeling like some friends and family will want to see pictures and video of this. Hopefully, I don't share too much!
This is a before shot of the little boys

And here they are after....pretty cute.

Joshua and Madison get their turn

Before Shot of the 3 big boys

Let the wives commence cutting


I think Jerad's high school and work friends will like the mohawk picture!



And Ally's Daddy is bald.

Uncle G's turn...

It was finally Ally's turn...our neighbor Karen helped us out
She is pretty cute, and yes, I know, she looks like my Mom.

Can you tell from Bobby's shirt? This is the Winger fam.

I did forget to get an "after" picture of the big boys. I just can't think of everything!! Actually, most of the picture credit goes to my neighbors..Dave and Holly Holstein who took care of it for us.

And here is the video I promised:

video

video

And that post just took me two hours to do!! I hope somebody likes it. More later...

Sunday, June 28, 2009

Missing Post

I am feeling lousy that I neglected to post yesterday. I don't want to lose my loyal followers. By the way, I am loving that I mentioned getting up to 100 followers....and it got pushed all the way to 116! Thanks so much for putting yourself out there. I can show Ally all the little pictures of the people in her army. I just showed her that her upcoming 2nd grade teacher is out there now.

For the update, her stomach pain continued to be horrible all through Friday night and Saturday. Not to share too much information, but she did finally go to the bathroom quite a few times. Jerad and I noticed that she was getting slightly better about dinnertime. Slightly. This worked in our favor because we were due to go to our friend Paula's 40th birthday party. This was the first time we even thought about going out, but we kinda figured that we had to try to do it sometime or we would both end up in the insane asylum. Parents of sick kids need a break, I can attest to that. The doctors and nurses even make a point of telling us that. Our wonderful and very trustworthy friend Lisa stayed here with the kiddlings. Ally did fine, of course some crying, but she would do that for us too. Thankfully her Grandpa and my Dad (Pa) stopped by and brought her some candy, which she didn't even eat but she got to see her Pa, which is what counts.

Afterwards, a lot of our friends came back to our deck, a popular neighborhood hangout, so that we could still be with everybody but be home too. Ally only woke up 4 times while they were here (a new record) which made us think we might be getting a good night. And we did!! Other than the fact that we sat on the deck with these friends until after 3am. So still not much sleep on our part, but maybe it was worth it for some non-medical conversation.

I will try to do two posts today, because today is the BIG DAY. A hair shaving party is happening this afternoon. Prepare to see A LOT of bald heads. Because we have some really true friends in our life who are going bald right with her. Note to bloggers: it is not me.

Friday, June 26, 2009

Day 28

Day 28 seems to be a pivotal date in the world of ALL leukemia. It is the date that the doctors kept holding out there as when the "final" bone marrow test will be done in order to check the marrow for minimal residual disease. I am feeling fairly optimistic that Ally's MRD will be below the threshold and she will indeed move forward into the next phase of her treatment. Dr. French confirmed my optimism today by saying that he also thinks she will be moving out of the induction phase. Of course, there is always a chance it will come back differently. We find out on Thursday morning.

After getting to the hospital at 8:30, they finally did the bone marrow at Noon, followed immediately by the spinal tap. I was pretty annoyed that we had to wait so long, although I know that emergencies do come up. I was just feeling really sorry for Ally because she is not allowed to eat or drink before the procedure. She was crying a lot and begging for a drink and food. So that just made me feel terrible. She was still in EXTREME belly pain today. I think she cried more today than I have ever seen her cry. In her whole life. And that was after being up all night again last night. We just have to get this resolved. We are trying. We are definitely trying.

So my general feeling for Day 28 is that we have hit rock bottom. Which is kinda how I think it is supposed to be, but it just stinks now that we are in the trenches of it. The doctor said to Ally "well you made it through the first month" And I think he was saying it in the sense that it is quite a hurdle that she/we have passed. I do think if we get this constipation issue resolved, she may end up feeling okay later in the week. They kept telling us today that this upcoming week was her "break" because she did not get much chemo today. Just the methotrexate into her spine. That does not sound like an easy thing, but I guess in reality it is a "break"

I hear her crying again, I best go. There is not much I can do except scratch her back and give her a hug. I rubbed her head and sang to her for about 30 minutes tonight just to get her to fall asleep initially. And believe me when I say I am a horrible singer, but I am digging into the bottom of my bag of tricks to try to comfort her. I feel so helpless.

Thursday, June 25, 2009

Back to the hospital

Ally's stomach pain has really never subsided. The doctor had told us if the change-up in meds did not make her feel better by Wednesday, we were to call. It has still been hurting her at various times of the day, but definitely every night. Out of the last seven nights, she has slept one night. And even that night she was up three times. We consider three times up to be a good night. Well, last night we were up pretty much the whole night, so we decided to call. I was thinking they might order some tests for Friday, because we were going to be down there anyway.

Dr Broxson told us to come in right away. As I have mentioned, they hate for their kids to be in pain and he did not want to wait even one more day. She was crying a bunch by this point. She cried all the way into the hospital and also into the clinic...lots of people staring at us! When he saw her crying, they moved really fast. That is one good thing...no waiting in the hemoc clinic. We were sent right down to the lab to get abdominal x-rays. She had one on that very first night when we went in, but that was about a month ago. Jerad and I were pretty anxious at this point. You can't help but worry about the cancer spreading. And to see our girl in pain all the time, compounded by both us being exhausted, I felt pretty fragile. I could feel myself breaking down before he even entered the room.

He took us away from Allison and called us into his office, which scared the living daylights out of me. He said he wanted to show us her films. He had never taken us away before. Then the nurse grabbed some chairs for us to sit down, and I got really, really scared. But then he broke the news to us...she was very constipated. He showed us on the film, compared to the one on May 27, and there does seem to be an issue. It is a side effect of the chemo drugs, and she had been going, but not enough. Sorry for too much information, but it is what it is. So we are trying some things to try to get her to go. She is pretty much miserable and I am anticipating a horrible night is before us.

We have to go back to the hospital at 8 am tomorrow. Another bone marrow aspiration, the fourth bone marrow in 28 days. Day 1, day 7, day 14, and now day 28. I just hate those things. And then she will also get a spinal tap. They will check her spinal fluid to see if the cancer cells have spread there and at the same time they will inject methotrexate into her spine to prevent it from doing so. For all of this, she will be under conscious sedation. Depending on her counts, she may or may not need more blood. Our trend is running that she gets it every Friday. She will NOT get the other two chemo infusions. I am hoping that maybe this will give her a slight break from the fatigue and generally cruddy feeling. Although I know from experience that the methotrexate is serious stuff. Mom got that, and soon after she developed this distant-like stare in her eyes. I looked at Ally the other day and I saw it. I saw it clear as day. Then about five people, including my sister, told me they really thought Ally looked like Mom now with her new haircut. And she does. I see it all the time. Unfortunately, I believe it is those chemo eyes that is causing the resemblance. A resemblance that I whole-heartedly wish was not there.

On another note, my friend Nicki got this necklace for me to wear. (picture below) She is just one of those super-thoughtful friends that always thinks of everyone else above herself. She has literally carried me on her back for the last year and a half of my life. Everyday listening to my rantings and ravings...ups and downs..providing much advice and actually thinking things through for me when I cannot. I hope she is ready for two more years of it! I just loved the necklace so much that I had to share. The artist that made it is now one of my "followers" and you can see her work here. http://www.queenbeedesignsbyamanda.blogspot.com/
Please say some prayers for my sweet child. No pain. No more leukemia cells. And for the rest of our family to get the strength to carry her through.

Wednesday, June 24, 2009

Normalcy?

We are all feeling a little better today. I think this is because I am feeling like a small bit of normalcy is returning. Very small still, but maybe we are getting the hang of this. It is so hard to believe that it has been just about a month. I was soo soo happy this morning when Ally sat on the floor and played with her baby sister. Of course, they were playing doctor with all of her stuffed animals. We even had a port with tubing coming out of her big teddy bear that Pastor Gil gave her . Hey, that is her life right now, I was just happy she was doing something.


After lunch, I finally convinced her to go to the pool. Ok, maybe I TOLD her we were going to the pool. Again, I want Evan and Carly to have some sense of normalcy, but I do have to be considerate of Ally's general feeling of the day. Compromising is the name of the game. So we went for about two hours! She sat under an umbrella with Madison and gave manicures to almost everyone at the pool (including boys). She had a few snacks and made a beaded necklace. It was hot too! We had a little fan going on her. At one point, for maybe 5 or 10 minutes, she got into the pool on a raft. I floated her all around and she said it felt good. Baby steps......


I know this all seems very very normal. Nothing too exciting. But normalcy is what we are striving for. I would love to have some predictability to my days, but I do not. (Other than the fact that I am either in my bubble or in the very-diluted-of-germs outside air)


Speaking of my bubble...lots of people are stopping by the house. And that is all good by me. I love to be around people. However, I have totally had to throw the notion that my house will be neatly picked up out the window. People are just gonna have to see what a house looks like when I am playing nurse to a leukemia patient, while also caring for a 4 year old and a 2 year old. It is not pretty. But that's ok, I am getting used to it. It is just a warning to all potential visitors. I am typically organized, but not right now. I almost fell over today when I opened up my coat closet. This is where my laundry chute empties into a hamper. The hamper is overflowing...there is about 2 feet of laundry on the top...then I look up and notice that laundry has backed up about halfway into the chute! Please, no offers to do my laundry!! I am not asking for help, just laughing at how we all just have to roll with it. On that note, I better go help my lovely husband who is currently folding laundry.




Keep praying for more days like today. And for that MRD to be less than .01% Day 28 is coming quickly.

PS...I am seeing that I have 96 official "followers" to this blog. However I know there are many more people lurking behing the scenes, which is fine. But I am hoping to get my followers number to over 100. Who will be number 100?

Tuesday, June 23, 2009

New Hair Do

Well my little girl did pretty good today. 5 times up during the night (could be worse) and probably about the same number of crying episodes today about her belly. (also could be worse). My day, however, was not the greatest. I did leave her home today with Priscilla, a woman who has watched her almost every Tuesday since she was 1. I felt comfortable with it. I actually went to the grocery store and went to work for about 2 hours...(I used to work every Tuesday..about 5 hours..but that has fallen down in the last month) But the hair! It keeps falling out with every bath, every brushing. Something needed to be done, so we had a friend of a friend come over to cut it short. I was actually off getting my own hair cut tonight, so Jerad and Suzanne managed it for me. Honestly, I did not want to be here anyway. There is no way I wanted to watch it. The girl has had long hair her entire life. For years, I religiously put pig tails in it everyday. She has beautiful hair. Wherever we go, people always comment on her hair. The thickness, the color, the style. Until now.

Now her hair is almost gone. I can almost hear the collective gasp of people when they see her now. I have seen people cry over it. Of course, no one would ever say a thing. I know it is just hair. But it is symbolic. Now she looks sick...like every other cancer patient. I still remember the feeling I had when I saw my Mom bald for the first time. She took her wig off and showed me. I said "Mom, you look great...you are beautiful no matter how you are" And she was beautiful to me...the most beautiful there is...but I still felt my breath being taken away from me when she first showed me. Once I got used to it, it was second nature. That is actually how I remember my Mom. I would rub her little head for hours.

So maybe that is my problem. My mom lost her hair and shortly thereafter she died. Maybe I have some sort of hidden complex about it. Maybe I just want to remember the pigtails and innocence of my little three year old Allison. Maybe it is because I am scared people will stare at her when and if we ever take her out. Maybe it is because I am scared that a big chunk of my daughter's childhood is being robbed from us.

People keep telling me, "Janel you are so strong. How do you do it? You are so brave...." and I am strong, on the outside. I would not like the kiddlings to see anything different. Someone has to keep the ship upright. But inside, a little piece of me is dying with every bit of hair that falls out. For now, the hair is just short. Not gone. But it is only a matter of time.

Monday, June 22, 2009

Summer Solstice-Longest Day of 2009

Today went as well as can be expected for our girl. She pretty much lays around most of the day. I tried to convince her to go to the pool and just sit on the side (she is allowed to swim, but she wouldn't have the energy). This brought big tears from her, so I dropped it. However, the other kids really did want to go, which is my constant dilemma of trying not to short-change anyone. Thankfully, my friend Suzanne and her daughter, Ally's BFF, Madison came over and sat with her for an hour while I took the other two to the pool. Thank you! Anyway, Suzy said she got real chatty and did really well with them. They painted nails and had a nice time. I am finding that she does better for other people and when I am not around. I think she may push herself a bit more.

Again, we tried to get her to go outside this evening...and again more tears. But, once she got outside she did fine. She had a big Uno match in the front yard and then we all about fell off of our chairs when she got up and started hunting for lightning bugs. All on her own. See to most people, this is just normal. But to us, it is a big deal. (And, I thought it was pretty cool that we were out doing this kinda late on the longest day of 2009. I have always loved that day.) It is almost as if we have a baby again, and wow she is hunting for lightning bugs for the very first time. It even caused us to run in the house and whip out the video camera. So, since everyone really enjoyed the other video that I put out there (lots of people far away like to see her) I have posted another one. Note to watchers, you will be surprised at the bald spots appearing on Ally's head. I guess that is all part of it, but I do think it is disturbing. Even to me. We are going to get it cut very short, but honestly, it will probably be gone in a week. It just irritates her now, so she wants it short.
video

Ally only cried of stomach pain a handful of times again. It is not gone, and she still feels like crap, but it is much better. I am hoping that the little antibiotic switch-off that Dr. Broxson did is making a difference. And, of course, your prayers. So our next hurdle is going to be on Friday. Day 28. Throughout everything we have learned, they keep focusing on this Day 28. She is going to have another bone marrow and spinal tap on this day, Friday. This time they will send the marrow all the way to Johns Hopkins in Baltimore for very extensive testing on the amount of leukemia remaining after four weeks of chemotherapy. They are looking for minimal residual disease (MRD) and this test is 1,000 times more sensitive than the last test they did. They are looking for microscopic amounts of the disease. If they find more than .01% we follow one path (more extensive treatment) but they/we are hoping to find less than .01% and then we follow the 27-month plan that I outlined before. Whew. I can't believe that the good option is 27 months long. But it is. And I think at that point they will give us the word that we keep waiting to hear: REMISSION

Keep the prayers coming for her MRD to be less than .01%. No stomach pain. And sleep.

She slept!!!!!!!!!!!!

I now interrupt our regular schedule of blogging to report.....that Miss Ally slept all night!!!! (well she did get up twice, but neither time did she mention her stomach) Jerad and I were so happy. When we got up the second time at 5:30, Jerad, in all of his tiredness, still had enough humor to say "crack open a bottle of champagne". I can't tell you how much we all needed to sleep. I think it had been about 5 days. I was actually getting dizzy! I had spent the night before Father's Day up with her, letting Jerad sleep for his holiday...uh, yea, that is the only free night he gets too. (Maybe his birthday)

While I am doing a quick post...I thought I would mention that Idle Hour Swim Team, for which Ally was supposed to be a member this summer, is doing a swim-a-thon in her name. I believe it is June 30th. They let us pick the beneficiary of the event and we chose Children's Medical Center. They have it posted front and center on their webpage, which you can view here. http://www.idlehourswimteam.org/ I am hoping they can raise some money for the hospital that has treated us so nicely and become our second home. We are all so humbled by the support that this team has given her. She only went to ONE practice before she was diagnosed, but they are treating her like she has been there for years.

Some stomach pain this morning. But nothing too severe. Thinking of getting the haircut today. Please don't forget to read Jerad's sweet post below. It only took him 2 hours to write, so I am hoping everyone takes the time to read it.

Sunday, June 21, 2009

(Note to bloggers - this is Jerad writing as a "guest" with special permission from Janel "the Blog" Barnett...)

For those of you who know me, you know that I am a man of few words and I prefer that those few be funny, but I will try to put on my serious hat for the most part and capture the day, Father's Day, through "Dad's" eyes as my wife requested...

Unfortunately it was another sleepless night for Ally, and her stomach pain seemed to be a little more severe. Not exactly what we were hoping after they switched up some of her medications on Friday in hopes of helping with the belly pain. This continues to be the number one issue, and it is very hard to watch her in so much pain through the night that she wakes up crying every hour or less. Tonights experiment: sleeping on her stomach. We noticed her napping this way a couple of times so we are trying it. At this point, we'll try any home remedy or witch doctor potion to make the pain go away.

In some ways, this was my worst Father's Day as much as the Ned Flanders in me hates to admit it. Seeing Ally losing her hair upsets me, seeing her sit idle while her cousins and friends play carefree upsets me, forcing medicine down her throat until she crys upsets me, and of course seeing her in stomach pain upsets me. I know the old Ally will return soon and will be stronger than the old, but in the meantime this process is very painful as a parent to watch and live.

But in other ways this was a great Father's Day (Of course Flanders would prevail!). My parents came in last night and went to church with me, then we raced home and tagged Janel so that she could hurry off and go to church with her Dad. With Ally's immune system at absolute zero, we may be tag teaming church for awhile, but I'm glad we were each able to go with our Dad on Father's Day. And it doesn't hurt to be a Dad. All the Dad's stood up at St. Brigid and received a special blessing and a round of applause. This was only the beginning of the freebies - my Dad, Evan and I went out for a round of putt putt and the Dad's played for FREE! This will probably be an annual event now that we know because it is pretty much the 3 of our's favorite thing to do. No DNA test needed for Evan, his passion for putt putt shows he's a Barnett. Here's a picture of Dad and Evan at Indian Trails.

Another favorite pasttime with Ally's illness has been playing board games, and I have to admit that I am secretly enjoying this. I haven't played this much Clue, Life, Yahtzee, Monopoly, Uno, Battleship, and Solitaire since I was 10 years old. So to try to perk Ally up we whipped out the Monopoly and she seemed to light up immediately. I know her belly hurts her a lot, but I also know that when we distract her enough, the pain seems to subside. She was giggling so loud Janel heard her upstairs, especially when I told her about Evan falling on the counter and into the sink earlier in the day (I have to admit that this was quite funny, I heard a noise and looked up to see his head and two feet sticking out of the sink!). I know Monopoly doesn't sound wildly exciting, but anytime we get to hear Ally giggling like her old self instead of crying in pain, it is very uplifting.

After Carly woke up from her nap, we headed to Janel's Dad's to christen the "Fox Hill Pool". Although the pool isn't quite ready for swimming (turns out a 38' water slide is a custom order!), the patio and outdoor kitchen, complete with a real wood fired pizza oven, were ready to go. Kudos to Bob and the Hess's who I know spent a lot of time getting dinner ready because the pizzas were excellent. Below is Kevin, Janel's cousin, moments before he combusted from the heat of the pizza oven.


Ally did MUCH better than we were expecting, lasting about 2+ hours before she was ready to leave. Ally and Bam Bam (Ally's great grandmother) and Pa (Janel's Dad) seemed to have a great time under one of the umbrellas doing some coloring and talking about various alternate middle names for me. Here they are below probably scheming up "Ralph", the name that seemed to produce the most giggles from Ally.

It was nice to spend some time with Carly at the pool as well. She's a Daddy's girl but not quite as much as Ally, and she's at one of my favorite stages where she's just starting to string words together and communicate. Tonight it was "c'mon daddy, go cookie mmm" or when dinner was ready "c'mon Nonny (how she says Evan), c'mon Owey (her cousin Owen)" at the top of her lungs. She's probably been the surprise through all of this ordeal because I can remember a time when Janel & I couldn't sneak out of the house without her screaming for a half an hour with a sitter, and now we have left her with just about everyone but the mail lady and she has taken it in stride. In fact, she picked my Mom to take her outside over me ("c'mon Gramma") and Janel to put her to bed over me which never happens - can someone tell Carly it's Father's Day? Here's my sweet Carly with her wild blonde hair.

So there's the Dad's input for the first and maybe last time (depending on blogger response...my wife is adamant that the hits better not go down!) I was actually going to post something a week or so ago, but I have to say that my wife is doing a wonderful job and I did not want to screw it up. I can do this once a year, but to go through every day like this would drive me nuts. So keep up the good work Janel, and thanks for a great Father's Day. And to all of you who are reading and following, who we don't know that well or haven't talked to in ages, THANKS SO MUCH for everything that everyone is doing and has d0ne. Your support is uplifting and overwhelming.

Most importantly, please say a prayer for Ally's battle with this terrible disease and for her constant stomach pain. Thanks again from "Dad" to Ally's Army.







Saturday, June 20, 2009

Stomach Pain Continues

Unfortunately, the stomach pain is continuing to be an issue for us. It hurts her all night, all day, all of the time. We were up with her about every half hour last night. (I should say that Jerad was up with her most of the time, I only got up twice) There is just nothing, nothing that makes the pain go away. She usually has a pretty good stretch of sleep from 4 am until 9 am. It continued to hurt most of the day. At about 4 pm, we rallied her enough to head up to a friend of ours birthday party. It was for Lucas Soin..the son of our friends who were also so kind to arrange the massages today.

They had a huge party with a circus theme. These people go all out. They had all kinds of animals...tiny little pigs, a lemur, a peacock, a porcupine, baby bunnies, llamas...they even had camel rides. They had a high flying acrobatic act, fire acts, a man on stilts, clowns, carnival games, carnival food (and adult food too). They had a swing ride, bouncy houses, and one of the coolest things ever...a little mine set up where the kids mined for gemstones. I think this was Ally's favorite thing. I thought that she was going to last for about 30 minutes. After all, she had cried the entire way there. But once we got there, she just lit up. Her little kid genes came back to the surface. She wanted to do everything, and we rode her around in a golf cart to do most of it. She ate, she walked a little, she played a few games. The Soins treated her like a celebrity. Fetching her everything that she wanted (sno cones?) and even arranging for her to feed the baby pony a bottle. We knew lots of people there (lots of people from Dayton Children's Hospital were there because both Vishal Soin and Jerad sit on the board of directors for the hospital together). Everyone wanted to see or talk to Ally. This was really the first public thing we had gone to since Ally was diagnosed. It was perfect, because she is allowed to do anything outside...the germs dissipate outdoors It really was a down day for her, she was miserable most of the day, but just being able to do this for two hours made us feel like a regular family again. And it kept her mind off of it. I know Melissa Soin is one of my most loyal readers....so thank you thank you thank you. And thank you for the massage too. I realized that I had been holding all of my stress right in my back, but I felt so much better afterwards.
Evan and I on our camel ride

This is the high flying act....a little hard to see, but in the back
Here is Ally, Evan and cousin Owen doing the mining. She loved it! Here is her treasure!
Feeding that pony...even got a smile!
Here we are with the lemur, peacock in the background
Swinging with her sister
I, personally, adored these baby pigs. How little!

This was Ally five minutes after we got home, holding her Bobo
Another thank you...to the Wingers for taking Evan to the new lego store in Cincinnati today. The little guy has had a tough time lately, and he deserved to do something fun and pick something out. He had the greatest time and loves his new Star Wars legos.

Tonight, I washed Ally's hair. We have been holding off on doing it...about every five days. Well I did it and I would say about 1/3 of it came out. I can't even touch it without huge clumps coming out. Jerad and I just sit and look at each other in sadness. As a parent, this might be the most depressing thing I have ever had to do. My precious little girl's hair...it was so thick and beautiful. Now it is going to be gone. It is just killing me. I think more than anything it is just a symbol of her disease. And I hate that too.

We have a huge deposit for the hair fairy tonight. (By the way, she brought $5 for the hair last night.) Ally thinks that tonight's amount will be more because there is more hair. She is very close to letting our neighbor (who has a barber chair in her basement) just cut it off. She is so aggravated by it. Any day now...

I think tomorrow's post will be a guest post by Jerad. In honor of Father's Day, he can give the father's perspective. And give me a night off.

Friday, June 19, 2009

Bad Day

Today was a bad day. In fact, Jerad and I were just discussing that it was the worst day that Ally has had yet. Her stomach pain continues and it is constant and it is a sharp, hurting pain. It woke her up about every half hour last night. She just wakes up crying in pain. It was so bad that Jerad hopped in the car just after midnight and went to CVS looking for pain relief. We've tried Mylanta, Pepto, Tums..nothing budges it. The prescription prevacid that she is on does not work either. We spoke to Dr Broxson today about our concerns. There has to be something to alleviate the pain...it is actually not even one of the side effects from the chemo or the steriod. The doctor started thinking that maybe it is because of the two antiobiotics that she is taking for her fevers and to keep the germs at bay. So we are stopping both of those. He decided to give her an infusion today of antibiotic (thru her port) that lasts about a month. If this works, we will be so much happier. And we have the added benefit of not having to adminster medicine at home every morning and every night. Please say a prayer that this takes the pain away from our little girl. Enough is enough already.

She also got two more doses of chemo today. Upon testing her blood, they found out that her hemoglobin was too low (probably adding to her general feeling of misery) so they had to give her another bag of red blood. Our quick visit to the clinic ended up being about six hours because the blood takes a few hours and that new antibiotic took an additional hour to infuse. Nothing ever goes as planned....so that is how we live our life right now. No plans...all is just wait and see. For two big planning accountant types, this is a bit hard for us to swallow. We just never know. We tell people...we may be there, we may not. Just wait and see. I guess we are living proof that life can be lived flying by the seat of our pants. (wondering where that phrase came from now?) Our good friend Kim Grant, who works at Children's, was supposed to be observing in the Hemoc area today. Coincidentally, she sat through much of our appointment with us. She was a bit taken back by all the medical jargon being thrown around and how much information must be processed. (We have learned so much in 21 days.) And, of course, how sad it was to see little innocent Ally sitting there crying and in pain. She was barely cracking a smile. She was in complete misery today, I tell you, and noone wants to see it.

I keep looking forward to tomorrow morning. Our friends, the Soins, have come up with the perfect "gift" for us. They have arranged for a massage therapist to come to our house in the morning and do a massage for each of us. We don't have to leave the kids, we just take turns. But we could really use it right now. Especially after a few nights on that hospital couch. This is quite a treat.

Finally, a lot of hair is falling out now. Ally is getting quite bothered by this, primarily because it is itchy and annoying. She is not too vain...I am not sure she will care about being bald. We will see. I don't think we will have her hair for too much longer. We are expecting a visit from the hair fairy tonight. This picture is her deposit for tonight. Apparently, she is a cousin of the tooth fairy. And if you leave your hair out, she may leave you something. Who knew?

Please just keep praying that we get through this extremely hard time. Pray for Ally to feel better....no pain. For Jerad and I to have the strength to deal with it. And for little Carly and Evan's life to just remain as normal as it can. They are dealing with the absence of their parents, both physically, but also mentally as well. Even when we are here, we are just merely getting by.

Thursday, June 18, 2009

Thank yous and such

First of all, everyone keeps asking me and yes Ally did wake up last night. But not as much. She got up at 12, 3 and 6 with stomach pains. She does not eat in the middle of the night anymore because she has been off of that steriod for a week now. But she does wake up in pain, albeit not as much as the night before, and I feel really really helpless. There is not much I can do. I usually give her a Kids Tums and scratch her back. I am not sure what Jerad does, but he is up with her a lot too. It is not a good situation when your child is in pain and you really don't even have anything to tell her to fix it. And it is not like having the flu, etc where you can say it will be better in a week. I hate it for her. We are going back to the hospital tomorrow for Ally's chemo treatment, and we are definitely going to be talking to the doctors about this one.

We spent the day doing...you guessed it...more crafts. The old standbys...potholders and necklaces, but also some new ones. Her friend Chloe came over and taught her how to make pom-poms and God's eyes. Maybe I should start up some sort of craft camp with Ally as the teacher? I was very happy when my neighbor Brooke called and invited her to have lunch with the neighbor girls on their front porch. She went over for almost an hour and a half all by herself. Oh, and they made some crafts too. I just thought it was good to get her out of here and it was her first time to be "away" from us since this all started. We finished up the day with a nail painting party...the girls are practicing painting different objects on their nails (watermelons, cupcakes etc) and the boys even wanted their nails done too. I couldn't help but take a picture of Carly all cuddled up watching Teletubbies with Larry. That is Larry...the purveyor of the Ally's Army bracelets and also Miss Carly's godfather.

I have been wanting to find a way to thank all of you for the hundreds of gifts sent for our little girl. I just can't even express my gratefulness adequately here or anywhere else. There are all kinds of people from all facets of our life, many of whom don't even KNOW her, who are sending her packages. It is completely overwhelming. Work friends, old high school friends, college friends, friends of other family members, neighbors, teachers, coaches, church groups, friends of friends, parents of friends...the list goes on and on and on. Some of these people we haven't talked to in 15 years! It is amazing that one little girl and her fight against something horrible can bring people together. I started thinking that we should all live our lives everyday as if we were in the midst of a crisis. I have never felt more love and loyalty in my entire life. So, no thank you notes will be written by our girl (or the mom) but please know that I am eternally grateful. A million thank yous.....

For example, just today she had her new favorite lunch, Chicken pot pie courtesy of Donna Stegmeier. She had literally just finished her last bite of oatmeal and said "mom can I have another one of those good pot pies??" We had dinner courtesy of the Humphreys. Yum. Her soccer buddy, Caden, stopped by with a Build a Bear. Nicki and Suzanne both went out and bought her more potholder yarns. Her Aunt Tara's friend, Michele, who I may have met once, mailed a package. Our architect, Jason's son, made her nice card. A man that works with our friend Bob at UD (who we don't know!) made us chocolate chip cookies. How lucky we are. Every day, all day, we are overwhelmed. Completely overwhelmed. Here is a picture that I took about two weeks ago.....of all the stuff that she had received at that point. (We have easily doubled or tripled this and need to dedicate an entire room in our house to this.)

Thank you friends.
"We are most alive in those moments when our hearts are conscious of our treasures." --Thornton Wilder

Wednesday, June 17, 2009

Meeting Sofie and Abby

After an interrupted night of sleep, Ally finally woke up at 11am! I know she was tired, but all night long she kept having stomach pain. It is more like a reflux type of pain, not nausea. We were up with her five times. She never had this pain in the hospital, but did prior to that. It dawned on us that maybe it was because she was half sitting up in her hospital bed, but at home she is laying flat. Well, Jerad told Dad about this at around 11am. By 12, Darren had already loaded up his truck and brought over Mom's hospital-like remote control bed. It can sit up, the legs can go up, I think it even gives a massage. (maybe I should sleep there) My Dad means business...if Ally needs something, it is there within moments. So, maybe, just maybe it will help Jerad and I will get a little sleep!

The highlight of our day (actually of our week, maybe our month!) was when Ally got to meet her new twin cousins, Sofie and Abby, who were born last Monday. Jerad's brother Brad just added girl number 3 and 4 to his family. We couldn't go see them because they live in Columbus..we are not allowed to go too far away right now. So Brad and Kim brought them down to see us. How cute they are! Ally and Evan each got their own baby to hold. They were here about 3 hours and I barely even heard them cry. We kept noticing that we really have a lot in common with them right now. These are the few things that I remember:

1) Up all night
2) Trapped in a bubble, too scared to go out
3) Constant feedings
4) Nervous, wives scared for husbands to go to work
5) Not able to enjoy the outdoors very much, even though it is summer





So those are all four of Brad and Kim's girls (Grace on the left and Kenzie on the right)

We did get Ally out to Evan's softball game too. She was crying when we left the house (stomach) but we pushed her through. Once we got there, she was fine and I think she even enjoyed being out in the fresh air. Then she saw a whole family at the baseball fields wearing their bracelets (Thanks Pezzots) which was pretty cool. I guess those things are selling like hotcakes. Larry called here and said he was quitting his regular job and selling bracelets from now on. Thanks for supporting Ally's Army and the Leukemia and Lymphoma Society.

Tuesday, June 16, 2009

Ally is home again!

Ally was released from the hospital today. Her ANC count did not really go up, (as I thought) but the doctor let her go anyway since her fever had stayed below 101. She is taking a double dose of antibiotics at home and is due back in on Friday for more chemo. Yes, more chemo. So she will go a full two days before we are back downtown at the hospital again. About two hours after she got home, we had to head back out to a previously scheduled appointment for her wig. So that pretty much wore her right out. By the way, any guesses as to how much a wig costs? Her's is real hair, if that makes any difference for your guess. Oh yea, $598. Geezy. We did get a break on it, because there is a special fund that pays for them for children. Which is very nice. So we got it for half price. I just had no idea. And.....for the first time in a while, we had dinner at home. Together! Thank you Coach B and Miss Paula for bringing it over for us.

I have an opportunity to lay out there for anyone that is interested. Our loyal friend, who a lot of you already know, Larry Booher, started looking into bracelets for everyone to wear to support our brave girl. Awesome idea. After investigating, he found out that the color for leukemia is orange. I wanted them to say "Ally's Army" and have everyone wear them for her. I think she will see everyone wearing these and know that we are all behind her every step of the way. She has to fight the fight, but we will all be right there with her. I wear a Livestrong bracelet...I actually got it when my Dad had his cancer in 2002. When my Mom was diagnosed, I put it back on. I have never taken it off. When Mom passed away, they took her Livestrong bracelet off...and put it right onto me. So now I have three...not sure how long I will keep wearing the Livestrongs. But Ally's Army is not coming off until we beat this! Here is what they look like:

Sooooooo....Larry has kindly offered to manage the bracelets for us. We are asking a minimum donation of $3 per bracelet. He has both an adult size and a youth size. We have about 250 bracelets total, but who knows, we may need to order more! Every bit of that $3 is going to go to the Leukemia and Lymphoma Society. We are raising money for that organization and will also be doing a walk in Ally's name in October for the same charity. (More info on that later) I think they can be mailed pretty easily, if you kindly pay him for the stamp. His email address is booher1@sbcglobal.net I am not sure what this is going to do to his poor email account, but contact him soon and get your bracelet!!

They are also available at the Mills-Morgan offices at 3500 Pentagon Blvd, Ste 500 in Beavercreek. (the 5-story building behind Sam's Club) A limited number will also be on sale at the Clark golf outing (which I think might be this weekend). Brad Barnett should be able to help with that.

Thanks for stopping here to check on our brave Ally girl and for supporting her (and us) throughout this whole ordeal. We are thankful for all who have joined in Ally's Army.

Remembering

Ally did not get to go home today. She is still residing at the hospital and continues to be the only child in the hemoc wing. The main reason was her blood counts did not come up very much...ANC went from 0 to 30. They like it to be higher before she goes home, like 200. However, being that she just got chemo on Friday again, it seems unlikely that these counts will rise anytime soon. She was also right on the brink of a fever. She went as high as 100.5 yesterday. Although they do not consider it a true fever unless it is 101 or higher. Sooooooooo......the doctor asked us to stay another day. He wanted her to prove that the fever would not come back. He also wanted to get a few more doses of IV antibiotics into her. Maybe continue at home with a little home health care bringing some more antiobiotics. I am telling you, these people do not cut corners. Which is good. Although we wanted to go home, it is such a blessing that they are so involved and truly wanting what is best for her. I guess when dealing with a life threatening illness, which I keep getting reminded that she has, you really want to error on the side of conservatism.

We passed the day by having quite a few visitors come down..which is ok as long as they are not sick. She also put a mask on and walked out to the playground area again. This seems to be our retreat everyday. I am noticing that her little cheeks are not so little anymore. She resembles a chipmunk now, from the steriods. They make her retain water and she also eats quite a bit. Jerad's Mom tells us it is called Moonface.

Thanks to Ally's top notch IT guy, Bob Winger, we had some analytics plugged into our blog here. I am really surprised (and happy) to say that we are averaging between 250-300 visitors here every day! Ally's army has some great enlistment figures, don't we? I noticed today that a few of Jerad's childhood friends have signed up...and there are also people all all over the US looking at her story. These people have never even met Ally! So I put a little video clip out here for you to watch. It is not riveting, but you can see the chipmunk cheeks and hear her little giggles. She is happier still, and I love to hear her laugh. It had been a long time!

video

Sadly, I spent a good part of the day reflecting about my Mom. She passed away from cancer exactly three months ago today...at age 60. Too young. Three months actually seems like so long ago to me. She was such a huge part of my life. We talked or saw each other every single day. I nursed her for 15 straight months of horrible cancer. I miss her so much. If ever there was a time I needed my Mom more in my life, it is right now. She would have helped me through all of this...with the other kids, making us meals, doing my laundry, being a shoulder for me to cry on. Don't get me wrong, this would have absolutely devastated her...seeing her beautiful granddaughter go thru cancer. But I do believe her strength would have carried us all through. My mom was a fighter to the end. She taught me to be strong and faithful. She taught me everything I know about how to be a Mom. She was just perfect to me. By watching her through her disease, she taught me how to hold onto hope when times get rough. I try to remember that she is living in my heart everyday. Because she made me into who I am today. She is my angel...watching over me and watching over my kids.

I was reading a passage the other day and it reminded me of myself. It said the strength of a ship is only fully demonstrated when it faces a hurricane. And right now I feel like I am in the eye of the hurricane. I hope I have the strength to get through this again. Although this time, we WILL beat the cancer.

Sunday, June 14, 2009

Craft Day

Ally is doing better today. Her fever is here and there. Sometimes normal, but never too high. The highest I saw was 100.4 today. I was thinking they may let her go home, but the doctor says he can't let her go until her blood counts start to come back up. It is called bottoming out...when a few of her blood counts go to absolute zero. Her white blood cells are there and they also look at this factor called ANC. (I think it is absolute neutrophil count.) When her ANC is less than 1000 her immunity is compromised. When it is less than 500, we are supposed to be careful. When it is less than 200, she is not allowed to go to indoor places and she has to wear a mask at times. Today it is at zero! So the doctor wants her numbers to start buiding again before he will release her. It seems this may be hard to do, because she just go two more chemo drugs on Friday. But hopefully it happens.

Ally and I have been hanging out and doing crafts today. Jerad took the other kids to our neighborhood pool party. So far we have made a potholder, 2 keychains, a necklace, a bracelet and some bobby pins. Earlier, when Carly and Evan visited we also took a long walk to the Children's Hospital playground. She went on the swings and was the perkiest I have seen her in three weeks. I actually heard her laugh a few times today. It has been a long time since I have seen that. It is weird, but whenever she gets to the hospital she always seems to feel better. She really doesn't seem to mind being here. It is really just hard on the rest of us. Tonight we had a girls night in watching Camp Rock and having popcorn. She is the only patient in the whole hemoc unit and has a nurse all to herself.

I have been talking about her port, but I never really got to that part in the initial story. They moved so fast with everything upon her initial diagnosis. We found out that she had the leukemia and within about 15 hours, they were doing surgery on her to put this port in. We had to pick the type of port for her. There is one that is under the skin, accessed by inserting a needle into the skin. And there is another one that actually has leads coming out of the skin, thus no poking, but they are always hanging there. There was no swimming with that one. It was a no-brainer for us...swimming is a huge part of her life. So her port is inside of her chest and it is about the size and shape of a bottle cap. A tube goes straight from this port around her chest and right into her heart.

When they took her for surgery...that was one of the hardest moments for me. They said they were gonna take her and she started crying. But then they didn't take her for about 15 more minutes. So, she continued to cry and make herself more upset for that time. We were not allowed to go into the operating room, and she was just so scared to leave us. The poor girl had been through too much already. When they finally wheeled her down the hall, she was just screaming for her Daddy. She is her Daddy's girl. We came around the corner, and I could still hear her crying for her Dad. I felt so weak, I could barely make my legs walk down the hall and out to the waiting room. During the surgery, they were also going to do a spinal tap where they tested her spinal fluid for cancer in her central nervous system. I was paranoid about that because that is what happened to my mom's cancer. They were going to give her an injection of chemo into her spine too. She made it through the surgery just fine. She has one incision that is about 2 inches on the left side of her chest. There is another incision right above that...it is only about half an inch. In a few years, when the treatments are done, she will need to have it removed. It ended up being sore for about a week, but now she says she can't even feel it. Although at the current moment, it has a massive bruise around it (another symptom of leukemia) and it looks pretty ugly. In this picture, you can kinda see where it is on her chest and how they hook her up to fluids/medications/ etc. They also take her blood draws right out of there. That's her best friend Madison who has been a very loyal visitor.
Right now she is asleep next to me, still holding onto the glo-stick bracelets that the nurse brought for her earlier. She looks cute. I am going to sleep next to her on a pull out couch. I really don't mind it. Maybe I will get more sleep here than I do at home with my annoying dogs! Thanks again to everyone for all of the prayers and wonderful comments we receive. Jerad and I read each and every one of them. Really! The couple of nice people who offered to donate blood: She is actually B negative. I am not sure how that would work, but looks like you may not be the right match anyway.
Praying that her counts go up and we get to go back home!

Admitted

The fever never broke and I ended up paging the doctor. Of course, he told me to take to the ER. He said with her blood counts so low, she would never be able to fight a fever on her own. And if I kept waiting, he said the fever would just keep rising. He was quite insistent that we get to the hospital.

I got her down there and lifted her into a wagon. They let the hemoc kids (hematology/oncology...they keep calling it hemoc) go through a side door to the ER, so as to avoid all the germs in the waiting area. The doctor had called ahead and they had an ER room all ready for her. They actually give her a special room called a negative pressure room. It does not allow germs to come in when they open the door etc. The nurse tried to access her port right away to draw blood cultures. She had some trouble however, because I don't think they do it very much. They eventually got the blood draws..they send her blood out for culture to try to determine what type of infection is going on. They also did her normal blood counts. They had her on an IV antibiotic within a half hour. Their goal is an hour. So I was happy with that. By this point her fever was up to 101.5. So we did the right thing. We tried to avoid it. We kept using different thermometers and such. Jerad is always the optimist, but in this case there is just no option.

Jerad arrived a bit later. His sister Tara had come down and was staying with our other kids. Evan just cried and cried when Jerad left. Bunk had to peel him off of Jerad just so he could go. The poor guy is really having a tough time with this. Well, we all are. So my heart was feeling really heavy that he was home and sad. Yet again. We had just left him yesterday and it was a long day too. He is not the type of kid that ever acts like this, but this is just another effect that the disease has on our family. It scares me.

The doctors did not know the cause of the fever. The blood cultures may tell us something. It also could be a virus. It could be her body reacting to the chemo and the low blood counts. They also discovered that she would need a transfusion of platelets. (yesterday she had gotten the red blood cells, so the other numbers were good) So they are going to give her IV antibiotics every eight hours..and the platelets. And watch her fever and/or any new symptoms. We can count on a 48 hour hospital stay, minimum, but could be more if her fever does not subside.

She was transferred from the ER to the Hemoc floor...it is starting to be our home up there. They told us it would. I went home to stay with my youngest kiddlings, leaving Jerad to sleep at the hospital with her. I am hating when we are apart, and it is happening a lot here lately. Jerad said she was in better spirits tonight. We are never allowed to give her tylenol (because it masks the fever) but once she was there they gave her some. He thought it perked her up. This is a picture that I took of her yesterday, but it sums up what she feels like now. And she still has a ton of hair, even though they thought it might be gone by this point.



One more small note. If I owe you a phone call, please forgive me. I have so many messages on my machine right now. Most I haven't had a chance to call back. There are several that I haven't even listened to. You would be amazed at how often my phone rings. I would say somewhere around every 15 minutes. All day. I can't possibly answer it that often. Hopefully things will calm down at some point and I will return the calls!

More later. It is late and I will be heading to the hospital with the kids early in the morning. Last night I was up with someone (my lovely dogs...another post needed on them..or Ally) about every 15 minutes..until 4 am when it finally settled down. Then the lovely dogs needed out again at 6:30. UGH.

Saturday, June 13, 2009

Teetering on the edge..

Ally has developed a fever. This is what happens to the leukemia kids. By killing all the bads cells with the chemo, they also kill the good cells that help her fight infection. When her blood counts drop to low levels, which they have, she is unable to fight off any germ that flies by. This is why it is crucial to always wash your hands around her and also to keep all sick people far far away. She is also susceptible to just the general germs that are present in all of our bodies. They are there all the time, but our white blood cells fight them. She no longer has the white blood cells.

So her fever is about 100.5. If it stays at that for more than an hour, we head to the hospital. She has been there for 45 minutes, so I am thinking we are going. They start her up on IV antiobiotics and check her blood for infection.

Someone asked the other day about sending well wishes to Ally. No need to send much...she has gotten so many gifts! But if you are inclined, here is the address.

Ally Barnett c/o Jerad Barnett
3500 Pentagon Blvd, Suite 500
Beavercreek OH 45431

Friday, June 12, 2009

Thank you!!

Thank you for the prayers and keeping us in your thoughts. It worked!!! After a long day at the hospital, we just got the call. Her leukemia blasts were at 0%. Zero %. Zero Percent. We were hoping for less than five percent, so zero is a dream come true. The chemotherapy is doing what it is supposed to.

We arrived at the hospital at 8 am. They did a few various tests and accessed her port. She didn't even flinch when the nurse put the needle in. Then at about 11 am they did the bone marrow aspiration. Dr French is so great with her and she was under almost complete sedation. We kept saying her name, but she didn't even respond. This is good by me, because then I know that she a) won't remember it and b) won't be in pain.

The Dr decided that her blood counts, primarily hemoglobin, was a little too low. So we had an unexpected delay and she got a blood transfusion too. They say that may perk up her energy level a bit. She also got two more rounds of chemo. Long day and she is completely exhausted.

They let us go about 4pm. Ally couldn't walk out...too tired. On the way home, Jerad and I decided to do one last prayer. We were sitting in the car holding hands, praying for this one last time....please be less than 5%. We literally said Amen and within 5 seconds we got the call. Zero Percent! Amen. Amen. Amen. Amen. Thank you God.

Thursday, June 11, 2009

Thursdays

I hope this blog post does not end up sounding too negative, but if it does, I am apologizing right here at the beginning. It was a rough day today. Not just for Ally, but more so for me. Ally was really really tired today. She did very little. She went to the blood lab this morning and I also got her outside for just a bit. She laid in the grass with her friends. But that was the extent of it. Played a few games inside, but she really couldn't even hold her head up while sitting at the table. I just don't know if this is normal or not. I try to push her a bit, like they tell me, but there is only so much that I can do. I can't drag her around or force her to do much. All that I can do is turn off the TV and present her with options of things to do. She really doesn't even talk much anymore. I think she is just fighting through this chemo and fatigue so much that she doesn't want to expend any energy. It is sad.

And from my perspective, I would love to do more. I would love to get a big jigsaw puzzle out and work it. I would love to play more games. But the fact of the matter is that I have two other kids here all day too. Someone needs something every single minute. And having an almost two year old...that really limits what we can do. A bead necklace? Nope, she will throw those beads everywhere. Jigsaw puzzle, not if you want to have all the pieces. Card game? Only if you want to play 52 card pick-up. We love our Carly girl, but we just can't do these things with her around. Frustrating. And I mentioned being in the bubble, not able to go anywhere...well it is really getting to me. I had ants running around my house today. But couldn't go out and buy ant traps. (thanks Nicki for the traps, BTW) Simple things. I can't do them. I know people will help me out, but the whole situation is just very hard. They don't want to be left. I don't want to leave them. But, oh yes, I do want to leave here.

I keep hoping that things will get better. One day at a time. They are not getting better anytime soon. I haven't yet mentioned her treatment plan. We have 27 months in front of us if we get the numbers we want. Otherwise, more like 31 months of treatment.

These are the very basics on her chemo....we also have lots of meds at home

Month One: Induction therapy...they hit her very hard with the chemo. We go every Friday for treatments. They are trying to get her into remission in the first four weeks. If not, they will extend her induction.
Month Two & Three: Consolidation. Basically they lower the dosages in that period. We will still go every Friday to the hospital (spinal taps every week), but she will also be getting little bits of chemo every day. Home health care nurses will come to our house for this and hook her up here .
Month Four & Five: Interim Maintenace: Another big heavy hit, like they did in month one. Increased dosages. Only two spinal taps in this month. They told me this is one of the hardest times. It is when most of the patients get infections and end up in the hospital. Blood counts all go down to zero. Unfortunately, this will be September when she is starting second grade!
Month Six and Seven: Standard Delayed Intensification...Still going once a week. They throw a couple of new kinds of chemo in there and also some more home visits.

Once we get through the first seven months, assuming she follows the path (and her bone marrow test tomorrow is less than 5%) she will go into a maintenance therapy for the next 20 months. She gets IV chemo once a month, a spinal tap every three months, and she takes a few more of the drugs (by mouth) at home.

So please, please, direct your prayers towards her bone marrow test tomorrow. The blasts (leukemia cells) must be less than 5% by tomorrow or she will have to have even more treatments than what I just outlined above. They indicated that she will probably have to do radiation if that happens too. Enough is enough. Jerad and I are just so worried about this. It is funny how I used to worry about little things. Birthday parties, a clean house, what to take for the teacher luncheon, organic milk?, whether they do alright in their sports, too much TV, too little vegetables, not reading enough to them....it is all so meaningless now. I started to change my thinking on all of this when my Mom was dying. And now, I am just done with it. Life is too short. So my new theory is this...one day at a time.

I will try to post her % tomorrow as soon as I know it. Probably won't be until late afternoon though. We are heading to the hospital at 7:30 am. Quite early for my girl who rises at 10 am everyday. (and did I mention she eats once or twice in the middle of the night too?...a result of her steriod...we feel like we have a newborn again) On that note, I better go pack her midnight snack.

Wednesday, June 10, 2009

School Visit Day


The day was finally upon us. Karen Stormer, our nurse and chief educator from Children's, came out to Ally's school to talk about leukemia with the whole first grade. She is another one of those special people that makes me feel really at ease. I guess our whole team does really. To me, they are superheros..saving my little girls life. I put them up on the highest pedestal that there is. There were a few others in there...school nurses, her teacher for next year, principal, librarian, etc. She showed the Charlie Brown video. The kids would laugh hysterically at Snoopy but would then get pretty quiet when they talked about the disease. Ally was sitting in a chair and all the other kids were around her. I kept seeing them turn around to look at her, pat her, one girl was even resting her chin on Ally's leg. She sat there looking super strong. She never even flinches. The video can be a bit of a tearjerker, but luckily the lights were out and I tried to disguise my face.

She showed the kids a doll that had a port in it. She could peel back the skin on this doll and and show exactly what lies beneath Ally's chest. (Which reminds me that I still have more to post on our initial days.) The kids had a lot of questions. Most of them were very specific to Ally losing her hair. I think they also grasped the fact that Ally can get sick very easily right now, and if they are sick they should not play with her. Karen said one thing that pretty much felt like another stomach punch for me. She said "boys and girls, Ally will probably be the only person that you ever know that has leukemia because it is extremely rare." Well that just hit home. Jerad turned to me and said...Yea, it is like we won the reverse lottery. For the bad.

Ally got up and showed everyone her bead necklace. I will show this here on another day, but she earns beads for every procedure type thing that she has done. She stood in front of everyone and with her little voice said all the beads....these are my chemos beads, these are for pokes, these are for blood bags, this one is for surgery, etc. I looked back to the adults in the room and noticed a lot of tears. It is tough to hear a child talk about such adult-like and serious things. After this was done, the kids from her class did a play for her! I guess they had been "meeting" at the playground and writing the play in her honor. All on their own. About 10 kids got up and performed it right in front of the whole room. It didn't have anything to do with Ally...it was actually about Ninjas...but at the end they all said in unison "We hope you get better Ally"

They proceeded to give her a sunshine basket with all sorts of things the kids had brought in for her. Not gifts, per se, but things of their own that they wanted to give her. She got some special rocks, seashells, a handmade doll, a "be strong" bracelet, and one sweet boy wrote her an entire book with pictures. They also made a huge poster for her room...taller than her...with paper balloons. Each child wrote a note on a balloon and at the bottom it said "we lift you up". They also cut out little paper dolls of themselves. Then they were all taped together holding hands. They told her to put it by her bed and they would all be watching over her and hugging her. These kids are close knit, I tell ya. Karen, the nurse, told me that she has done this presentation over 100 times. She said she had NEVER seen a class so caring or do so many wonderful things at the end.

Then, to top it all off, all the kids from her class prayed for her. They each laid a hand on her and then as they said a prayer for her, they sat down. Until they all had said something. Mrs LeVesseur, Ally's teacher and my friend, brought a children's pastor in who helped too. She did specific prayers for Jerad, myself, and Ally. I was blown away by all of this. Who says you are not supposed to have prayer in public schools? I think when leukemia is there, that rule should be thrown out the window. And it was.
We rested during the afternoon, because we had another big event tonight. Evan had his first ever baseball game..on the Synergy team! This is something that Ally can go to, because it is outside we don't have to worry about germs. He got three hits, which was awesome for him. I think he is the youngest player on the team, too. Most kids are five or six, but we thought he could handle it. I was proud of my boy. He has taken a backseat lately, but tonight it was his turn to shine. It was fun for me too because quite honestly, I am getting very sick and tired of staying inside my house...MY BUBBLE, I call it. I get really cooped up and makes me crabby. My sweet friend Nicki came over and just hung out with me this afternoon. It makes the bubble so much more bearable to have someone in it with me!


First run!