Thursday, July 30, 2009

Delayed

Today was the day we went to get Ally's blood tested to see if she can move on to the next phase of chemotherapy. Her ANC had to be over 750 to move on and start the next round of chemo. Her ANC was only 70. And 70 is very close to zero! They put her into the holding pattern. With the ANC so low, she wouldn't be able to withstand any more. So we are NOT going to the hospital tomorrow. This is the the first time I will be at home on a Friday since mid May. The plan is to start the next round, month 3, on Friday August 7th at 10am. Again, she will have to pass the ANC test next Thursday.

Are we disappointed? Sure. It is scary to think we are giving those bad cells "a week off" from the beating they are taking with the chemo. On the flip side, we are giving our daughter a week off from the side effects and fatigue that those same drugs give her. Jerad said...well maybe the fact that her ANC is so low, maybe that means that the drugs are working and doing their job. When the nurse called to tell me that chemo was canceled, she also warned me of the high probability that this low ANC will bring on a fever and another mandatory hospital stay. So I have that to worry me to sleep tonight. Always something.

We went to the outpatient testing center here in Beavercreek today to give the blood sample. Or should I say samples? Yes, both my girls had to give blood specimens today. Carly's doctor had ordered a lead test, so I just did them both at the same time. First I held the baby girl, she got pricked, screamed, cried, consoled, and then I set her down. Then I held the big girl, who was crying even before she got poked, she cried, was consoled, and they both got to pick a gift from the gift drawer. I don't think they get too many hemoc patients there, and definitely not too many sisters. The nurse was quite possibly the nicest nurse I have ever seen and was hugging both my girls as we left. Here is Carly...running up to give this nice nurse a hug...the same nurse that just pricked her and drew blood. Kids are so forgiving! I think people were staring at us. I think people are always staring at us though...I'll save that for another post.

Thank you to Ada and Keli for coming today and bringing me a yummy chicken salad lunch. It was the best chicken salad I have ever eaten! Thanks for the gifts for me and for Ally too. But most of all, thank you for reaffirming my faith. I love hearing your stories...Keli even told me of several times that she was awaken in the middle of the night just to pray for our Ally. They assured me that there are angels watching over my girl.

Tonight I attended the team captain kick-off for the Light the Night Walk. There were a lot of captains there, but I think I am one of the few new ones. There didn't seem to be families themselves attending, but rather people that were there on a family's behalf etc. There are survivors who walk, but also, sadly, there are people who have lost loved ones to a blood cancer. Of course, I hate hearing that.

The walk is structured like this. There is a registration time when people are turning things in, etc. There are clowns and balloon guys and bouncy houses for the kids. About 7pm, they have special ceremony. To celebrate the survivors, but also to remember those who lost their lives to this disease. At 730, which is about dark, the 1-2 mile walk begins. They keep it short so that older/younger/sicker people can still participate. Every person carries a lighted balloon. Red if you are there to support someone, white if you are a survivor of the disease, and gold if you have lost someone. They say it is a remarkable sight to see all of these balloons light up at night. Gives me goosebumps just to think about it.

Our goal is to raise money for the Leukemia and Lymphoma Society. I will be setting up a webpage and it will have information on how to donate online. I guess that is extremely successful because people can donate right online and email it to other people to donate. I think everyone that walks raises some small amount of money...it could be $10. The teams that raise the most money are rewarded.

I have a few ideas of things I want to do to raise money. We did the bracelets. Great idea. Hats and t-shirts are next. I think we may have a party/concert with a cover charge with the money going to the walk. I also think we are going to do a poker tournament. Possibly a wine and cheese party. I bet we can do a spare change drive at school. Or maybe pay $1 and you get to wear a hat to school like Ally. If I could get a business or restaurant to help me, I have those little signs they hang up in the window if people donate $1. Restaurant nights. I have a big list of ideas. But only two short months to do it. And very little time!

So if you want to help us out, think of a small way to raise money. You can do this in Texas, California, Ohio, wherever. And then we can keep track of it on the webpage. Garage sale, lemonade stand, happy hour, jewelry party, maybe just ask your friends. Check out Sheri Cobler's comment from yesterday. Those Junction City kids have some great ideas. They are working at Pizza Hut as dishwashers to fundraise for Ally's Army walk.

I also have some more information coming on two different blood drives. I am still working on those and this post is getting too long so I will quit while I am ahead.

But think about it. Get an idea and just run with it. We can put some money towards research for this disease. And more importantly, consider walking behind Ally on the night of October 1. The balloons for her will light up the sky.

Wednesday, July 29, 2009

Grateful, again

I know I have spent various blog posts singing my gratefulness for all of the kind gifts we have received. But I must continue a little longer. I do not write thank you notes, hopefully people understand that would require days of time and reams of paper, so I must do it here and hope that people are okay with that. But I must say that we are now 9 weeks into this (actually 9 weeks ago exactly on a horrible Wednesday night)and we have received some sort of gift every day. Every day for nine weeks. The mail lady leaves packages on my doorstep nearly every day. If she doesn't, someone might drop something off, or Jerad brings something home from work. A neighbor stops by. I truly cannot believe it. A handful of people are sending cards every 5 or 6 days. (Mary, Shannon, Deb, Linda) Cards to me, to Ally, to Jerad, to Evan, to Carly. People have not forgotten us. The goodness of people uniting for our child...WOW.

I get notes from people that I haven't talked to in YEARS. From my old boss at Iams, David House, who I said goodbye to the week before our Ally was born and haven't heard from since. Well there he is...leaving me a comment on the blog. Ruthann...another old co-worker and a dear dear person...years have gone by and she is right there again. My old swimming teammate, Jodi, what's it been 20 years? Jerad's high school friend Sheri...again we are almost 20 years out! She sends us care packages all the time. Jerad's cousin Terri, who I may have met once or twice in the 15 years I knew Jerad, she is on the blog everyday, sometimes twice! And am I seeing a follower named Dirk out there? Is that the Dirk that I worked with when I lived in the Netherlands one summer? Not sure, but I do have three "hits" from the Netherlands on my map. Leave me a comment if so.

I am soo soo thankful to the army. I certainly don't want to go through this. I would love to wake up from this bad dream any minute now. But can you imagine how horrible it would be to go through it alone? I think lots of people do. And they sit between four walls in a hospital room. Alone. I hope I am never there. I could be someday...and it scares me.

Ally is down again today. She has no energy. She did spend a good deal of time with her buddy Joshua again today (at his house). We just cannot get her to eat. You should have heard me begging her to eat 4 saltines for dinner. Begging. She ate one cracker -10 calories. There is no way she is going to get energy if she doesn't eat. I am thinking we may be looking at her going on some sort of appetite stimulant here soon. We are going to the lab in the morning for more bloodwork. She also told me she would eat chicken and stars soup...a weird choice and again proof that she is more like my sister than me. My sister ate that everyday for lunch growing up. I remember it vividly. But whatever, if you see us walking through Kroger tomorrow with our masks on to keep the germs out (we have not done this yet) it is because we are desperate for some SOUP!

Tomorrow I am meeting with other "leukemia people" at a kick-off event for that Light the Night Walk I mentioned on October 1. I am going to try to get our team started and figure out what all I need to do. I want the army to be huge and I want to make a big impact. Anyone that knows my Dad...well he is a fundraiser and very philanthropic man. He has taught me well and I am going to follow in his footsteps. To try to raise money to battle this horrible disease. To fund more research so that more people do not have to go through this. To bring the cure rate from 80% to 100%. Leukemia research has come a long way because of this organization. If Ally would have been diagnosed with this in the 1960's she would have only lived 2 months! Look how far it has come....but I want it to go further. I will update more after the meeting tomorrow.

For now, how can I thank you all? Picture my arms hugging you right now. A virtual squeeze from Ally's mom. (I think I am always going to be known as Ally's mom and that's ok)

Tuesday, July 28, 2009

Keep the Faith

Blah. That is how I feel right now. I am not sure if I am getting sick or what but it kinda feels like I am. Maybe everything is just getting to me, I don't know. I was working out with my trainer tonight (I try to do that once a week) and I was terrible. I just couldn't do stuff! I am usually one that never gives up, I hate to quit, I hate to fail! And I didn't quit tonight, no, but I just wasn't the same as usual either. I do hope I am not getting sick for Ally's sake.

Ally was down today too. I do think Tuesdays and Wednesdays are her worst days. She just wasn't into doing anything. We go from flying off the diving board on Friday to barely getting her outside after dinner today. (And once we did she laid on a blanket in the driveway and even had Mrs Booher go get her a pillow....geez) She continues to eat like a bird. Thanks for all of the suggestions..I have tried the boosted up milkshakes...you name it, I have probably tried it. She is even saying no to McDonalds, but I might have to just go get some anyway. She loves the local Marion's pizza too, I should try that.

She is done with month two of treatments. Can you believe it? So on Thursday, she goes and gets a finger prick and they do a blood count on her. (she HATES this by the way, so I am dreading it) If her ANC is 750 or more, she is allowed to move on to the next phase on Friday. It would be Day 1 of Month 3. If it is not 750 they put her in a holding pattern. I think for a week, but don't quote me on that. I am still a newbie. I am still very anxious about the end of Month 3, that is when they will test her MRD again. That is the number one thing I pray for everyday. MRD less than .01%. MRD less than .01%. MRD less than .01%. That would be about the best news we could get at this point. But, we have to wait another 28 days for that. I hate waiting!

I wanted to mention this book that I love...maybe it will help somebody in the army. Every night before I go to bed (for at least the last year) I have read this book. It is entitled "Streams in the Desert....365 Daily Devotional Readings"-L.B. Cowman. My friend and spiritual advisor, Lisa Wygant, got this book for me when I was having so many trying times with my Mom. And now, well it keeps on applying to my life! It is a great book..you just look up the date, and there is a 1-2 page passage that is encouraging and inspirational. The passages usually remind me of the fact that bad things do have to happen to people. It is inevitable. (As Lisa always tells me, I am walking through the trenches right now) And when these bad things happen, well that is when people really turn to faith (or else they run, which can also happen). And truthfully, it reminds me that facing adversity will ultimately become an advantage for me (and my family) if we keep serving and waiting patiently. Someone said this to me once about the leukemia....that some nugget of gold is going to come out of this. I truly believe that is true. I don't know what is going to happen, but I do know that some of the strongest souls in the world have emerged after great suffering. The book reminds me everyday that there is no way to learn of faith except through trials. And once the lesson of faith has been learned....it is everlasting. So, hey, I am not perfectly faithful... is anyone? Somedays I am down and sometimes I have my doubts. But if that ever happens, just remind me of this last paragraph! Keeping the faith.......

Monday, July 27, 2009

School fears

Another day has passed. I looked at the calendar today and was truly shocked to see that it is July 27. I seem to lose track of all time. It feels like my time is standing still, but yet the world continues to move on all around me. So once I saw the date, I counted forward to the start of school. 4 weeks. I had to stop and catch my breath. Normally, I look forward to school starting. I love a clean slate and new schedules, etc. But not this year. I am scared to death. I WANT Ally to go to school, of course. I just don't know if she has the stamina. I don't know if I have the stamina to get her there. It is not going to be easy. I told Jerad he better start blocking out some time in September. It is going to take one or both of us to get her there...and I mean possibly sitting with her through school. (get ready, Mrs Hamilton) We actually have a few friends who mentioned going to school with her too. Because, to be quite honest, I think she would do better for someone else. Less whiny and needy. There is also the germ factor. When her ANC is low, she is at high risk for picking up any germ/virus that flies by. But the doctors still feel that school is more important and that she should go. (I need to clarify this with them, exactly) I guess they think the experience of school and friends and learning far outweighs the risks of catching something. It is so important for these kids to still feel like kids and not like they are banished from society.

This week was Ally's favorite vacation bible school at Peace Lutheran (Mrs Booher's church). She has gone for the last five years! I am really sad that she is missing her sixth year. We used to wait all year for this week to come. She was actually signed up, and the volunteers said they would be very accomodating to her, but her ANC was only 300 on Friday. I thought it would be better to keep her home rather than risk another in-patient stay. But it is with a heavy heart that I let her brother go, and she stays home, yet again.

Speaking of her brother, he is starting Kindergarten! Normally, that would be a huge deal in our house and we would talk about it everyday etc. Oh, I have barely addressed it. I feel bad. I had a talk with him at bedtime tonight about getting on the school bus. He is not a shy one, not a scared one, so that is good. He'll be fine. But he could probably use a little more coaching from his Mommy. Today I worked with him for about an hour on his reading. He seems to be getting it, just the very beginning. If only I had more time.......I feel bad for the poor middle child, and especially now!

Ally was down a little more today. It seems the weekends are good and then she gets progressively worse. She wanted to go to the pool, but then she never got in. She did sit there for over two hours though, and that got us out. More nail painting. You can tell from this picture that Ally has been here. Lots of Ally's Army bracelets and even more nail polish:
Her belly is hurting. I think she maybe took in 200-300 calories today. She had lost another three pounds on Friday. Her weight is down a lot. I am scared if she doesn't start eating that we will be looking at IV nutrition. I do tell her this, but it makes no difference to her. She just doesn't want to eat. Period. I almost give up on her, but I know I shoudn't.

Thanks to all of you who still check the blog even though we are not in the midst of a medical crisis. I have many LOYAL followers and it is not necessarily the people that I would expect them to be. Some of them are people I have never met, but feel like they are truly my friend (Queen Bee). I tried to teach Carly about blogging tonight. I was showing her the pictures. So here she is... future blogger...Carly Barnett. (okay, she is actually looking at Sesame Street here, but we were reviewing the blog just prior to this)

Sunday, July 26, 2009

Fighting a cold

Ally is sick with a cold and a cough. She has actually been sick with this for two or three weeks now. She is a pretty stubborn girl and absolutely refuses to blow her nose. She had several ear surgeries when she was younger and is always afraid the nose-blowing will pop her ears. So now we are dealing with phlegm that has drained into her stomach and is causing her to vomit several times a day (and night). I don't think the chemo makes it any easier either. She was up several times last night with this, and she has even done it tonight already. It is no fun, and I feel sorry for her having to deal with this on top of everything else. I don't know how she is supposed to battle a cold when she has almost zero white blood cells in her body. Their job is to fight off illness. I had everyone listen to her chest at the hospital on Friday, because I am fearful this could settle in her lungs.

Other than this and some general fatigue, Ally is doing pretty good. She wants to do more things, and that makes us very happy, but then she definitely hits a wall whether we are ready to be done with something or not. She gets a really crabby look on her face and then, well, we just know we have to stop. Today she went out to Young's Dairy and played about half a round of putt-putt and had ice cream. Her sweet grandparents (Jerad's parents) drive two hours pretty much every week just to spend a little time with her. They are devoted. So they went with the kids and Jerad while I was with my family at church. I am not sure that I have mentioned this but Jerad's parents and his sisters Tara/Bunk and Jessica/Shaun are helping me out EVERY Friday. And all of them work too. So they have to take a vacation day every Friday just to help us out so that we can go to the hospital. And they all live between one and two hours away too, so there is a drive involved. Now that is what I call devotion to our little girl. Here they are at the dairy:
Grandpa Barnett also showed his solidarity and support of Ally by shaving his head this past weekend. Too bad he is wearing a hat there and you can't tell. I guess his brother Bill just talked him right into it and then Joyce got the clippers out and he was bald. Evan and Jerad decided that they needed to stay bald for our girl so they also went bald again today. This time Ally actually felt well enough to operate the clippers. (last time she felt horrible and couldn't really participate)
Thanks to everyone for all of the hats too. We have received so many! I can't remember them all but we got some from Marco Island FL, Isle of Palms, NC, Tennessee, Wisconsin, Boston, New York City, Maine (thanks Aunt Jess), even Paris, France! (thanks to our exchange student friend Megan Neizgodski who just got back)

One thing that keeps happening to me: when Ally is a little bit better, then I get a little more sad about losing my Mom. I guess I have more time to think about that. I am still very much in grief over losing her and today was a really sad day for me. I have no idea why, it just hits me sometimes and I miss her so much it hurts. If I had my Mom here with me today my life would be incredibly different. So I still have to try to deal with that, because if I don't I am afraid I may end up in the insane asylum someday. I keep wondering why I am being hit with so many things at once. Why? WHY! Right now I keep thinking about going back to our original hometown of Erie PA. My grandparents (mom's parents) are still alive and I want to see them so much. So I am thinking of putting my Evan and Carly in the car with me and taking a trip up there before school starts. Ally just can't go that far away. I hate to leave Ally, but I don't have too many chances to see my sweet grandparents either.

As I was getting the putt-putt pictures off of Jerad's work camera, which we hardly ever use, I noticed this picture taken last fall. Mom and I were driving thru her woods on her golf cart with the kids. They hopped out and posed for this picture with the pretty yellow leaves. Look at my beautiful girl. So full of life and so full of hair. Some of you followers may have never seen her like this. Where or where has my former life gone? And when is it coming back?

Saturday, July 25, 2009

Lazy Saturday

A quick post about our lazy Saturday. I don't think too many people are checking the blog over the weekend. I don't blame you...get away from the computer.

We all woke up at 9am. Even Mommy and Daddy. We are so so grateful to be getting a full night of sleep and sleeping in is even better. We did some morning projects: Ally seemed to be raring to go. We went downtown to our market. It is an open air market with fresh veggies and breads, organic stuff, good thai food, homemade dog treats, good coffee, and fresh flowers. It is one of my favorite places, it always has been. We had read that today was kids day. They had vendor's kids and grandkids selling cute little breads, fruit and veggies for a quarter, homemade knitted finger puppets, and several little chefs doing cooking displays etc. It was very cool for our kids to buy stuff from other kids. They also LOVE the market. I especially liked the kid sized cranberry scones. For us, this is the only kind of shopping we can do together. I can't take Ally in Wal Mart or Kroger or the mall. Oh how I wish I could. So I can just stick to the farmers market.

All three of our kids took a nap at the same time this afternoon. This even after waking at 9 am! The stars must have been perfectly aligned. We were making up for a week of late nights. This allowed Jerad and I to exercise together...always good.

We made dinner with the eggplant and bread we bought at the market and ate in the basement for some reason (Jerad's idea). It was fun. Again, we don't eat together all that much because Ally is usually sleeping at that time. So we really appreciate just a simple meal together. The little things are so much more important now. We had family game night in the basement and Ally beat me at Cadoo. She really had a normal day again. Her ANC is low right now (300) so we are pretty secluded, at least from indoor events. But she feels quite well. We are happy.

Looking forward to going to church and breakfast with my Dad and Nicki in the morning. I missed it last week because of Carly's party.

It turns on a dime

It turns on a dime, our life that is. Friday was the perfect example of that. We got to the hospital at 8. Ally's port was already accessed, so no poke! Several things were going our way.

1. Ally was in a great mood! Laughing, joking. Said she wanted to go swimming. Today!
2. Several friends stopped by..Miss Vicki and Miss Betsy who are friends that work at Children's. Both brought gifts and Vicki even told Ally that the nice man who owns the local McDonald's (down by Lowe's) wanted to give her a lifetime supply of milkshakes. woo hoo
3. Her hemoglobin was good (10.5) No blood today!
4. Her platelets were good (57). No platelets today!
5. Dr Broxson had a ton of patients to see in the clinic, he wanted to do her spinal early.

Could it get any better? We were going to be out of there by noon.

And then, the spinal started. She cried and flinched when she got stuck by the needle in her spine. She continued to cry off and on throughout the procedure. She has cried a little before, but not quite like that. At the time, I didn't realize what it could do, but Dr B told the nurse to give her another 10 of verced. (this is the amnesiac drug)

The spinal was done in about 15 minutes. We wheeled her back to her hospital room. As soon as we got in the room, she started throwing up. Also a new thing. She couldn't get up because of the anesthesia, so she was throwing up all over her pillow and (NO!) Bobo. Bobo sits right up by her head for every procedure. Ally has a cold and so we thought it must just be that.

For the next three hours, her heart rate stayed very high. I sat glued to that monitor tracking its every number click. I told Jerad...something is not right, I just know it. He didn't believe me at first, but soon came to realize when Ally started crying every few minutes and asking to go home. We would ask her...what hurts? what are you feeling? headache? anything feel funny? She would seem to get mad at us and just cry and say she just wanted to go home. She has never acted like this. She actually never seems to mind being at the hospital. We make it fun for her. She is like a queen there. She wouldn't eat. She wouldn't drink. She asked for McDonalds, so I ran to go get that for her. She fell asleep and then never ate it. Slowly, her heart rate went back down a little. But she still wasn't acting right. I was so so worried. I kept thinking she might have a seizure..I had read somewhere that 10% of spinals end in a seizure. Once her eyes rolled up into her head and my heart just dropped. I was preparing myself. I had been trained about seizures when my Mom's cancer spread to her brain. The nurse called the doctor back over to check her, but he said she looked fine.

So we just waited and waited for her to come back to normal. I was not going to take her home like this, that was for sure. I was so scared. This was honestly the most scared that I have been the whole time. Maybe I got myself more worked up than I needed to be, but I did not like what I was seeing.

About 3 o'clock, she sat up and started playing a game on the laptop. She just clicked over to normal just like that. Her and I were sitting on the bed playing this game together and she started making fun of her Dad. I knew she was okay. As quick as it came, it left. Ally was back. We were laughing about the game, but I found myself just cracking up. It was relief. I was elated that she was ok. Another bridge...crossed.

I walked out to the nurses station and told Miss Susan that she was ok. We were standing there looking at Ally's charts, and we figured out that the extra 10 of verced was the most that she had ever had. The nurse said it can make them either really giggly or really tearful. We concluded that the verced may have just been too much for her. Dr Broxson called to check on her when I was standing there, and the nurse told him that Ally's mom thinks she is ok now. So we got to leave. Our nice early noon departure was now looking at 4pm. But still time to swim......

We had previously planned to go up to Fox Hill and celebrate Nicki's party with homemade pizza and swimming. Ally said she wanted to go. She was finally freed of her needle and tubes after almost three weeks of being accessed. She was allowed to swim. She did not hesitate very much and went into the pool with her cousin Bella and her friend Madison. They played in the pool a while, then the hot tub, and then I hear that she is going to do the little slide. I was shocked. Wait! I had to grab the video cam so the Army can see! Here she is:

video

She swam more. I even saw her going underwater. This is huge. I think she was always fearful of getting her port area wet, but she overcame those fears Friday night. Next thing I hear is that she is going to try the diving board. Well, there goes my brave girl! She really is a good swimmer, and she continued to amaze me. Here she is going off the board.

video
And she finally decided that she wanted to try the 38 foot water slide. With her Dad holding her. They kinda put the brakes on going down, but she did it. And everyone there was cheering for her. You have no idea what it means to Jerad and I to see her being a kid again. To see her not fearful, not crying, not hesitating. Smiling. Jerad and I could just cry a river of tears when we see that.
I thought back to my panic-stricken afternoon. And how did I get from there, with my daughter hooked up to all kinds of monitors..oh yea and she just got two chemos put into her body too....how did I get from that to this. Well, only God can answer that. And I will leave it up to him. As always.

Thursday, July 23, 2009

Mommy-Evan fun days (and Carly too)

From my limited experience, I can say that one thing that happens when your child gets leukemia is that your other children get jealous. Not necessarily jealous of the disease, but maybe that too, but more jealous of all the time/attention/food requests/hospital time, etc that the leukemia child is now getting. Let me just tell you right now that it makes everything even that much harder. As if I wasn't already worried enough about my daughter fighting a life-threatening disease, I now also have to spend considerable time and energy to make sure that my son doesn't turn into a punk and that my baby girl learns all of the things a 2 year is supposed to know. My time gets eaten up caring for Ally, but my "quality time" as I will call it has significantly increased for the other two kids also. (Where did this time come from...I don't know...but I haven't cooked lately, so maybe that is part of it... hey, I haven't watched a TV show EVER either) When I get a free moment, I feel a stronger urge to sit down and read them a book or play baby dolls or go do something with them...in the past I probably just spent more time on cleaning, organizing, and laundry.

In efforts to do something with them, and not in our house, I asked our babysitter Jackie to come once a week to the house and sit with Ally. They get along great together, and Ally actually asks for her to come. No guilt on that front-always good. So now I have three hours a week to show Evan and Carly the outside world...I intended on taking them to the pool every week. That's not happening due to our horrible July weather. We have done this a few weeks now. I love it and I think it means something to Evan. Carly just goes along for the ride.

Today we went bowling with friends. Evan, Caulin, and Sam are the three amigos. They are dangerous together. Really. I am worrying about high school already.
And then we went to the Greene...E's been wanting to see those fountains.
Carly actually ran the other way...check out her disgusted look.
Did you know they make marshmallow flavored sno-cones? They are awesome.Root beer is good too.
And that is how we spent our three fun hours today. I am really good at cramming a lot of stuff in a short period of time. I learned that from Jerad.

Interestingly enough, I wasn't the only one taking pictures of Evan in the rain yesterday. I opened the Dayton Daily News and saw my own son on page 3 today. Check this out.

Ally was pretty good today. She did a few things and didn't have a belly ache. We are set to be down at the hospital's Almost Home unit tomorrow at 8am. It is her last spinal for a while (maybe a month or so?) so that is a big hurdle for us. She is also getting the evil chemo...vincristin. I don't like that one. She may need blood or platelets, we never know that until we get there. She also should get freed from her port being accessed. Maybe swimming will be in her near future. Please pray that she makes it through this spinal with flying colors.

Oh, and happy birthday to my friend Nicki. I know I have mentioned her on here before...how she practically carries me around everywhere and guides me through my life. I have learned much about who I am and who I strive to be from her. Some people say their spouse is their soulmate...well I think she is my "soul friend" She has a blog too, and my family makes frequent appearances there. If you ever want to check her out... you can get a few more glimpses of our Ally.
http://remember.winger.com

More after treatment day.......

Wednesday, July 22, 2009

Rainy Wednesday

Well my day started out by me flying out of bed to the screams of my daughter. It was 7:30 and she was yelling. I didn't even hear Jerad leave, and I was a bit confused. She had to go to the bathroom and thankfully got some relief from her constipation issue, but it is never a pretty sight when that happens. Painful. It got her so upset that she started gagging and also throwing up on the floor in front of the toilet. Her nose has been running so drainage issues are complicating matters. I am not one that handles vomiting very well. I just don't. Ask my husband, I virtually made him sign a prenuptial agreement when we got married that he is responsible for all puke. Unfortunately, having a cancer patient under our roof is not helping matters any. So, I also started gagging at this point and broke out into a cold sweat. Some caretaker I am.

We recovered from that, but Ally just didn't have a good day. I keep trying to map out how the chemo effects her. I just can't get it!!!! It is always different and they are always giving her different types of chemo. I just don't know exactly what is going on inside her little body. I do know she was down today. It seems to me that she does okay the first few days after chemo, but then her counts start bottoming out and so does she. It wouldn't surprise me if she needed blood again.

Her little friend Madden wanted to see her. I knew Ally felt bad and couldn't do much. So her sweet friend just brought over a movie and sat and watched it with her. Kids this age...they do know friendship. They do it and we don't even really have to teach them. It must be somewhat human nature. I am learning all about it and it is precious. Her friend Madison also wanted to see her, so she went to her house for a little bit. Always good to get out.

Other than that, we watched the rain pour down all day outside our bubble. It never stopped...all day. It was quite dreary and seemed especially dreary and depressing to me today. Where is summer anyway? Once while Ally was doing this:
I took the other two kids out to play in the warm July rain. My Gramma Ruth always says you have to get out each day to "blow the stink off" so we followed her motto. My hobby..my favorite thing to do is photography. For obvious reasons this has taken the back seat lately. Lately I usually just point and click and I don't even bother with my "good" camera...but rather use one that fits in my back pocket. Today, I took out my baby, my camera, and tried to get some more artistic shots. Actually looking at the composition and the ISO and the white balance, etc. I haven't done it for months. A little rusty. When I am all done with this saga in my life...I am gonna learn. I am vowing right now that I am gonna read more, study more, maybe even get the master photographer Erin Cobb to do an online class or something. But for now, I was happy to just get a few fun shots and play a little. Grown ups need to play too.
Baby Girl, and I love her curls!...a bit skeptical of the rain and lurking in the garage
Evan making the most of the puddle at the end of the driveway..I was trying to catch the little droplets in my shot.
Soon to be five years old....my boy.
He loved the rain today. At least somebody did!
And thus, I will cease complaining about the rainiest of days. Sorry. And I will share an excerpt from the great poet Henry Wadsworth Longfellow (remember him?) which reminds me that if it were sunny every day, then we would never appreciate the sunny days.

Be still, sad heart! and cease repining;
Behind the clouds is the sun still shining;
Thy fate is the common fate of all,
Into each life some rain must fall,
Some days must be dark and dreary.

Tuesday, July 21, 2009

Infection is clear

Ally was down a little bit today. More tired than normal, not wanting to get dressed, etc. I still struggle a lot with deciding if I should be doing more with her, or just letting her rest. After yesterday...a long day spent doing things all day...I come to think maybe I should be doing a little more with her. It could be that her counts are "bottoming out" today. In fact, she was supposed to get a blood draw tomorrow because they think she is going to need a platelet infusion. Platelets are cells in your blood that help your blood clot. If your platelets are low, and you even get a tiny little poke (like from a shot or a spinal) you could end up bleeding a lot. Anyway, I called the doctor to set up the test and they told me not to worry about it, they would just do it Friday when we are at the hospital. So I proceeded to ask if they had heard anything about her infection and if the latest blood cultures had "grown" anything. The nurse told me that the cultures were negative. The infection is cleared! Thank god. Here I was worrying myself to death that she was going to need her port taken out, and they didn't even call to tell me about the negative result! Ah well, I am just so happy that it is gone. One less thing to worry about.

Ally's new home instructor for school stopped by this afternoon to meet Ally and also to read to her. Mrs. Brower is a friend and neighbor of ours who just recently retired from being a teacher. She is so wonderful and I am so happy that she is helping us. She applied to be a Beavercreek Schools employee just so that she could help our Ally. I truly believe that God was looking out for us when he sent her our way. She sat on the couch with Ally for almost an hour, reading her a Junie B Jones book and just talking to her about life. She even managed to get a few smiles out of her and our quiet girl even spoke!

We did drag Ally up to Dad's pool tonight again for an impromptu Synergy pool party. (Synergy is our family business where Jerad and I both work...although me, very limited) She was crying and didn't want to go, but we managed it. I know it is not much fun for her to sit in a chair and watch everyone in the pool. Even if she could swim, I don't think she would want to. I do believe the highlight for her was judging the cannonball competition off the diving board, which Kopilchak won. (sorry Todd) And who knew that Suzanne Duplain could do a back flip off the board? Impressive. The highlight for me was having some swimming races. (I swam competitively my whole life, but they didn't know that). I loved beating the boys. heehee To be fair though, we had a relay race competition. Me-Lexi touched the wall after the winners: Todd Duplain and Kopil. So congrats to those boys, but watch out next time! We are so lucky that our work friends are just like family to us. I love to go into work on Tuesdays (and I did go today) and see all of the orange Ally's Army bracelets that come and go from our office. All these big construction guys wearing orange bracelets to support our little girl. Wow.

I am having a feeling that tonight is going to be bad. Her stomach continues to bother her and she has already woken up several times. She is barely eating anything these days. (I can't even get her to eat candy!) McDonalds is about the only thing she will eat. The research nurse that we deal with actually said McD's is one of the better things for her, especially if we get her a milkshake. High protein, high fat, high calories...all good for her situation. Please pray that these bothersome side effects go away and that we can have our old Ally back. Maybe another prayer that she will actually eat something and gain some energy from it. Until later......I am off to do an antibiotic infusion. Only a few more days of this.

Monday, July 20, 2009

Play Date with Play Dough

Things continue to be pretty good for the Barnett family. Ally seems to be tolerating this chemo pretty well. If we could just get her stomach pain under control I would think she would be pretty happy, all things considered. Today we had another "first"....I feel like she is a baby and I am reliving all of these things again. I had to take Carly to her 2 year well visit at 10:30 this morning. So my friend Nicki (with her boys Joshua and Sam) said they would take care of Ally for me. No way am I taking Ally into a germ infested doctors office. So I came back to get her around noon and she asked if she could stay longer. Keep in mind that she has barely left our house or gone with anyone. She did a few times, but only for an hour or two. They were having so much fun doing homemade play dough and science projects that I told her she could stay. I checked on her a few times, and then she finally came home at 4pm. She needed her IV antibiotic or maybe she would have just slept there. Wow. I was surprised and so so happy. Of course, it gave me a break, but really I just loved that she "got out" and had a fun day outside of our bubble here.

Poor Carly got a big vaccine shot in her thigh this morning. You would think after all that I have seen and been through that a shot would be the least of my worries. But it still pained me to see my baby girl crying and looking at me with those eyes. Those eyes that I always see from my other daughter that say "why are you letting them do this to me?" Hate it.

Evan and Daddy had a special boys night out at the Dragons Game tonight. We are really really trying to do special things with him. It is rough to be a five year old and have your parents in a constant state of turmoil and to be "stuck" in the house more than he would like. Our friend Jon Kruesch had a box at the game and invited Jerad and Evan. He was more than thrilled to eat popcorn, peanuts, ice cream, and cotton candy. He even brought a hat home for each of his sisters.

One more note. SAVE THE DATE. There is a "Light the Night" walk to support the Leukemia and Lymphoma Society on the evening of October 1. That is a Thursday. I am the team captain for the Ally's Army group. I would like as many people as possible to walk behind her and support her. Of course, I will be trying to raise money for them too. Kids, adults, schoolmates, classmates, coworkers, neighbors, family, and friends. I am working on setting up a web page for it, and more information will follow. I want our army to take over the streets in Kettering and show our support. Nothing will stop Ally's Army from marching on.

Sunday, July 19, 2009

Happy Birthday Car-Car!

Today was all about the birthday party for our now two year old, Carly Anne. We had a pool party for her up at Dad's new pool. My Dad actually did almost all of the pre-party work for us, so we owe him BIG TIME. The kids swam, played on the playground, hit a pinata, sang, and then had cake. Ally, Joshua, Madison, and Bella were manning the concession stand. They were quite busy today because each child at the party (almost 20) was given money to spend as they wish at the concession stand. They really loved being busy. Ally lasted a long time up there 10:30-4:30. She did really great for most of it, but did end up getting tired towards the end. But hey, that is a long time for a girl still feeling the effects of Friday's chemo. She was asleep soon after we got home. Overall, she is doing much better than the horrible days we had in the first month. The bellyaches continue to be her main issue, as is the constipation. My friend Nicki pointed out that she actually does stuff now without laying her head on the table. I hope we never see the horribleness that we experienced that first month. We are enjoying being able to sleep at night!

One more quick story and then I will just share some pictures from the day. I am one of those people that look for signs of things. I used to search for signs about certain life decisions that I had to make. Ever since my Mom died, I really spend a lot of time looking for signs from her. I have to say that I really haven't seen too many signs, and that is disappointing to me. (Someday I will share the story about the fire rainbow that I saw on Mother's Day...that was my Mom.) But today, I think I saw my Mom too. Call me crazy, I know some will think I am. Mom was a HUGE bird lover. Actually, she loved all things nature. Flowers, trees, birds, gardening, animals, acorns, gourds...you get the idea. But she really really loved birds. A lot of times now I will be walking outside her house, and I look up in the sky to see a huge bird, probably a hawk, circling overhead. And then I say to myself...oh there's mom, watching over us. So today we were all celebrating Carly's birthday...and this is the first grandchild's birthday since her death...and all of the sudden we look down and there is this tiny baby bird standing right there with us. I mean maybe two feet from all the people. Right there! This baby bird was making so much noise that you wouldn't believe it was coming from such a small bird. It was just chirping up a storm. Everyone noticed this bird just hanging out right in the middle of the party....making itself heard loud and clear. Where did it come from? It certainly could not fly yet and was hopping everywhere. A few people who know me really well just looked at me with that knowing glance...knowing that I immediately thought that little bird was my mom finding her way into the party. Linn came up to me and said "here is some bread for him" and I just said "that's not a him, that's a her" I started crying. I miss my mom and wish she was here with me everyday. But especially for important days like today...only two short years ago she waited outside my operating room for her granddaughter to be born. She held her new grandbaby with such pride and always called Carly "the most perfect child". She always told everyone that. So today the little birdie was there, probably saying happy birthday and bragging nonstop about her little girl Carly. I hope she can somehow see what a cute little girl we have been blessed with.

This is my sister Melissa. I think we kinda look alike, but she is a full six inches taller than me! I made her stoop down for the pic!
Carly started the pinata action.
Concessions!
This looked a little dangerous to me!
Me, Dad, and Car-Car

This is Jerad's mom with her Dad and her Aunt Barb and Uncle Dick. Dick was in town from Florida!
Ally and her cousin Bella
Pa's girl. Always has been since she was born!
Daddy's girl.
With her lovely Aunt Tara, Jerad's sister.

Saturday, July 18, 2009

More shots, more blood.

Fridays seem to roll around here pretty quickly. Before we know it, we blink and Friday is here. Friday is treatment day, so never very much fun, but we trudge on through it every week like the Ally's army soldiers that we are. One of my blog followers pointed out that every Friday that has passed brings us one more step closer to the finish line. And the finish line is just so very very far away from us, but I like getting further along in this process. I want my girl to be cured and rid of this disease. I want my old life back. Well, something tells me my old life will never be back, but I want our new life to start then.

We had a long day this Friday. And I neglected to post again. Which seems to send some people into a tailspin and I am sorry about that. The day went about as expected. I am learning a little more, and this time I got the nurse started on the cross-match for Ally's blood right away (whereas last week this process cost us almost two hours) The really annoying part about this Friday was that Ally had to get de-accessed (the needle pulled out of her port) and that means about 20 minutes of crying while the tape from her bandage is pulled every so slowly from her skin. So we got through that, only to get re-accessed again the next hour. (The needles are only allowed to stay in her port for seven days.) She is getting increasingly apprehensive of the moment when they stick the needle into her port. She hates it and the anticipation is actually worse than the actual poke. So we dealt with that.

Once again, she got wheeled into the treatment room for another lumbar puncture with the chemo into her spine. They do sedate her for this, but today for some reason she was still crying quite a bit. The poor child is just scared. I was standing at the end of her bed and she just kept looking right into my eyes with the look of fear. I knew she would not remember this moment, but mom's are supposed to be able to take the fear away. And I cannot. I actually have the fear myself. So I was feeling pretty helpless. For some reason this time (and I think it was my sixth or seventh time) I really got upset. I was choking back the tears and feeling that big apple in my throat and hoping noone in the room was noticing me as they were all commenting on Ally's favorite colors and her nail polish colors for the week. Sometimes the sadness of it all just overcomes me and I have to pull all of that reserve strength out of me. It is exhausting. It is extremely hard to watch your child suffer in pain and be fearful of what is going to happen next.

They got the spinal done and this time she had to get 2 really large chemo shots in both of her legs. Thankfully, they did this while she was sedated. Two nurses each took a leg and counted to three. I watched the huge needle go in (twice) and Ally screamed. Sedation or not, it hurt her! Damn this disease. About 60 seconds after the shots, she asked us: Did I get my shots yet? We told her yes, they were all done. She asked again another minute later: When am I getting my shots? and we keep telling her "hey girlie, they are done." It was quite funny but I think she asked us about five times. At least she won't remember the trauma. Maybe I should ask if I can have some of that sedation.

She did need some more blood as her hemoglobin level was too low. I knew it. I could tell Ally needed it because she gets even more pale...and this was why I started the nurse on it early. The blood takes a really long time to transfuse, but we did make it out of there by 3:30 (after arriving at 8). Grandma brought our other kids down for a while and I think Ally and Grandma had some good times together. My role is to be the constant back stratcher, as seen here:

She just looks like an angel in this picture with her Dad.

I ran into Dr Broxson in the inpatient unit. I told him my worries about her infection. The last blood culture showed that her germ was still growing. So he told me that he was going to treat it once (with the 10 day course of IV antibiotics that we are doing at home) and then if the germ was still there her port would have to come out. I am just praying that these antibiotics kick it. Having another surgery would just be a major set back for us. He also enlightened me on the MRD issue. Remember how on day 28 she tested higher than the acceptable threshold for minimal residual disease? And the result was 11 months of intensive treatment rather than seven? Well, he told us that they are going to do another bone marrow at the end of August to test that MRD again. That is going to be a major source of stress for all of us. We will feel great if she goes down below .01% where they want her. But if she doesn't, well, I can't even think about it right now. But I can say that I am going to be highly anticipating this day, and directing my prayers towards that. Dr B went as far to say that he thinks she WILL be under the threshold. Oh how I wish he knew that for certainty.

I know this blog is about Ally, but really it is about all of us. Today was a very special day for our family because our baby girl Carly turned two today. She is just the sweetest of all girls...her sweet little voice can make you happy just by hearing it. And she talks all the time. She is the apple of our eye and brings much happiness into our world. She has cute little girl curls in her hair and the brightest blue eyes. She loves to dance. I cannot believe that she is 2! On her six month birthday, my mom had her surgery at the Cleveland Clinic. Ever since that day Carly has had to deal with much adversity and change in her life. Jerad joked that we would leave her with anyone, including the mail lady, but it is true. She has had to live 18 of her 24 months without the full presence of her Mama. She is pretty independent, laid back, and carefree as a result. But I wish I could have been there more for her. She loves her sister so much and I can already see them being best friends for life. Her brother picks on her some, but she loves him much and she gleefully calls him Nonni. (when she couldn't say Evan) They play together a lot and brother will even play baby dolls with her. Those two really stick together and she relies on him a lot when her Mom, Dad, and big sister are gone so much. They have a special bond because of the leukemia.
Carly's favorite birthday present
Loving her ice cream

On her new scooter, just like her big brother. Big sis lends her a hand.
Carly is just like my Mom in that she loves to play baby dolls and house and grocery store, etc. She got a cute little baby care station for her birthday. She had dinner at her favorite place (the boohers, haha) and her friends all went to Ritters and she had ice cream for dessert. We even sang to her. Tomorrow is her big birthday party so there are more pictures to come. Happy Birthday to my sweet Carly girl. We love you more than you even know.

Here are two videos that really show her personality. One is dancing in the car (always) and another is of her opening her present. (for Joshua, he wanted to see her open one)
video

video

Thursday, July 16, 2009

Summer Days

Absent our disease, today would have been absolutely the most perfect summer day. It was the perfect temperature...warm, not humid, with the perfect breeze passing through. Every flower is at its absolute peak of blooming. The kids are all really into summer now, school is far enough behind and far enough ahead to be completely absent from their minds. The pool water is all warm now and the clouds were making funny shapes in the sky.

Today, Ally actually asked me if we could go to the Walnut Grove pool. She loves to go there and get grilled cheese sandwiches and fries for lunch. In a typical summer, we would go there once a week. We haven't been there at all this year. "Sure", I exclaimed and proceeded to call everyone I know to meet us there. The more the merrier, always my mantra. Plus, Ally doesn't "ask" to do much. She has really been feeling well these days. We packed a big bag of crafts/beads because she couldn't get in the water. (Her port is currently accessed.) I figured we would stay about two hours, and we ended up staying over three. She did great. Amazingly enough, most of the kids ended up hanging right with her. She brought her perler beads again and even the little boys were crafting it up. I was shocked that the other kids did very little swimming. What great friends that she has to do that with her. She ate, she smiled, she got a treat from the snack stand...her Dad even met us there for lunch. Her brother played with his friends, her sister practiced her swimming with Mommy. I felt the summer sun on my skin and for a brief moment I forgot our situation. We were as close to normal as we have been yet. All of the kids were happy and I had three straight hours with no complaints from Ally. Wow.
They line up their towels and eat their grilled cheese.

Doing the bead projects at the table
What is more perfect than sitting in the shade under a 100 year old tree?
We headed home in time to give Ally her antibiotic infusions. On the way home she asked for a Frosty from Wendys. As always, I said "sure" but then that means I have to get one for the other two kids too. And they had just had ice cream at WG. Ah well, such is life. Gotta give the girl some extra calories whenever possible, so it was a double ice cream day for all of them. Isn't that what summer is all about? Carefree and happy to be. It is summer, after all.

I am afraid tomorrow is going to be another tough day. She is gonna get slammed with chemo. A spinal tap with methotrexate, two shots of Peg-aspariganase in her legs (and they hurt for weeks after), and vincristin. Vincristin is the evil chemo that they had given her that whole first month. It is a really tough one and also causes the horrible constipation. I feel pretty sure that she is going to need blood too. She seems quite pale to me today. Most of all, I am hoping that we get some further information on her infection and that these antibiotics are clearing it up. So a long hospital day is in front of us.......

Wednesday, July 15, 2009

Surprise

Everyday it's something. A little surprise for me and when it comes or how it comes I never know until it gets here. Everyday there is some new twist or turn in this thing we are doing called leukemia. I keep waiting for "normal" or for things to "quiet down", but it is just not happening. So, I guess I better not settle in yet. Today, about a half an hour before I was to give Ally her antibiotic (which they trained me to do yesterday) they called and told me to stop. Just in time. Now they want to treat her with a more specific antibiotic...I am not sure if something else grew in her blood culture, but this antibiotic would go more to the heart of the infection. The home health nurse was on her way to retrain me with this particular kind of infusion. I called the clinic to see exactly why they were changing it. They told me she grew something I cannot pronounce or spell, but the bottom line is it could be an infection in her port. I calmly asked a few more questions, and they told me the blood culture they took today would tell them more. We would know if the port is infected, and if the antibiotics would take care of it in 2-5 days. AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHH. That was me screaming after I politely hung up the phone with the nice hemoc nurse. Seriously. Seriously! Why can't I have a normal course of treatment like everyone else that has ALL?

So the nurse came out, and re-instructed me on how to deliver these infusions to Ally through her port. It amounts to lots of sterilization and four different pushes of medications in four different syringes. Not hard, but a little time consuming. Oh, and by the way, I have to do it three times a day now. For ten more days. At 3pm, 11 pm, and 7 am. I am hoping I can do it without waking her up for that 11pm shift. And 11pm is blog time too--nice conflict there. My refrigerator is full of medications and I have another arsenal of medical supplies in boxes too. Here is one set of everything I have to do, ready to go for tonight.
On the non-complaining front, Ally is in really good spirits. She created all kinds of masterpieces today with perler beads. Evan loved them too. They are little designs that you create and then I iron them together. Madden and Regan even came over for few hours this morning to create some designs. I do feel happy today because Ally is happy, for the most part. We had another HUGE thing happen in our house today. We all sat at the dinner table at the exact same time. This may sound like a small thing, but for us HUGE. It hasn't happened successfully in weeks, maybe since this whole thing started. And the other HUGE thing is....I cooked the dinner. Yes, the food wagon was absent today and Mom filled in. Ally loves these things called chicken rolls. In an effort to actually get her to eat, I tried it. And she ate one. She is eating very very little these days. Some days I think she only gets a few hundred calories. Anyway, since the dinner thing was such a big deal for us my lovely husband had to get the tripod out and take a self-timer shot for everybody to view. (all his idea) And we have no idea how to use the self timer, so we had to get the camera manual out, too. We really wanted you to enjoy this picture, and our dinner was cold by the time we ate it as a result. Do you see the little artichoke in the picture?? Little known fact about me: besides popcorn, I think artichokes are my favorite food on this earth. And I actually bought one and made it myself.
Please keep the prayers going that this infection is not in her port. I am hoping it just clears on its own with the antibiotics that I will faithfully administer to her. I do not want her to have another sugery. That would just not be a good thing for her right now.

Four months ago today my Mom was freed of this horrible disease. She is resting in peace now and I can't help but think about her today and everyday. Although she is not here, she is still giving me the strength to fight this battle for my daughter. She taught me how to fight...I'll teach Ally...and together we will win.

Tuesday, July 14, 2009

She's Coming Back

Ally seems to be bouncing back from everything pretty well. She seems happier, laughs a little more, and I even noticed her doing a few things for herself that she would normally ask me to do. All this and I knew that her blood counts are going down, which should be making her feel worse. I took her temp several times today, no fever. I keep praying that the fever stays away and this bacterial infection just gets resolved with the antibiotics.

Speaking of antibiotics, I found out today that I am going to earn yet another notch in my nurse's training belt. Ally has to do 8 more days of IV antibiotics and I have to be the one to infuse them! The home health nurses came out today to teach us how to do it. They are coming tomorrow to take some more blood cultures, and they will watch me do it then, but after that I am on my own. So that's a little scary. I have to flush the line with saline, then infuse the antibiotic over 30 minutes, flush the line again, and then infuse her with heparin. I am going to try to do it at 3 o'clock every day. But I also have to remember to take the antibiotic out of the refrigerator at 9 am as it needs 6 hours to warm up. I just know that I am going to forget someday. So if you are talking to me some morning, please remind me. (Nicki...Melissa, this is a good job for you)

I feel better today. My feelings go right in line with how my daughter is feeling. Sometimes I wonder if I am doing too much for her. She is seven years old, and not a baby, but I am still pouring her juice, getting her stuff, etc. I sometimes think I am making a mistake by catering to her every need. (blanket, water, craft supplies, scissors, close the blinds, get the remote, kleenex, the requests go on all day long). But then again, the poor girl is sitting here with leukemia and feels pretty run down from all of the chemo. I have heard of people ruining their kids independence when they go through trials like this. And I have also read that she should be pouring her own darn cup of juice. The more they do, the better they are. As is everything I do these days, I walk a fine line. I just gotta figure it out.

The highlight of my day came this morning. The two younger kids were over at their cousin's house and everything was quiet. Ally and Madison were in sitting on the couch, and I was in my office doing some work (I am a very part time CPA..from home) They could not see me, but I could hear them. They were doing this little craft project (bendaroos) and just chatting. The song, "The Climb" came on the radio and all of sudden they were both singing it. It is a Miley Cyrus/Hannah Montana song, which I would normally run from as fast as I could. But I listened to them singing the words in their sweet little voices and it just touched my heart. Then I really listened to the words.....they fit our situation exactly. I started looking them up online. It's a good song for her and a good motto for our Army. These are the words...think of Ally the next time you hear it!

I can almost see it
That dream I'm dreaming but
There's a voice inside my head sayin,
You'll never reach it,
Every step I'm taking,
Every move I make feels
Lost with no direction
My faith is shaking but I
Got to keep trying
Got to keep my head held high

There's always going to be another mountain
I'm always going to want to make it move
Always going to be an uphill battle,
Sometimes I'm gonna have to lose,
Ain't about how fast I get there,
Ain't about what's waiting on the other side
It's the climb

The struggles I'm facing,
The chances I'm taking
Sometimes might knock me down but
No I'm not breaking
I may not know it
But these are the moments that
I'm going to remember most yeah
Just got to keep going
And I,
I got to be strong
Just keep pushing on, cause

There's always going to be another mountain
I'm always going to want to make it move
Always going to be an uphill battle,
Sometimes I'm gonna have to lose,
Ain't about how fast I get there,
Ain't about what's waiting on the other side
It's the climb

Keep on moving
Keep climbing
Keep the faith baby
It's all about
It's all about
The climb
Keep the faith
Keep your faith

Monday, July 13, 2009

Down, Up, Down

Ally's fever must have broken sometime in the night. She finally settled into a good sleep about 1am, and then slept all night. When she woke up, we took her temp. We were thrilled to see no fever! I actually took it several times because I thought it must be a mistake. We got a call from the clinic that they would like to see her back down there today. She was due to get another course of IV antiobiotics.

When we got to the hospital, we saw Dr French. He informed us that the blood cultures that they took Sunday when she was in the ER did grow something. This means that she has some sort of bacterial infection in her body and it was present in her blood. They had done these blood cultures three or four times before and she was always fine, so I was not happy to hear this. He said the type of infection they found can be serious, but that hopefully antibiotics would take it away. It was interesting to me to hear that they take her exact blood specimen in the lab and try different antibiotics on it to see what works. That way they don't have to give her a broad spectrum antibiotic that kills good and bad bacteria, but they can hone in on exactly what this particular infection needs. The fact that he used the word "serious" when describing the infection upset me. He even mentioned the possibility that she has developed an infection in her port and then it would have to be surgically removed and reinstalled elsewhere. I DO NOT want to do that. I had talked to two or three families that had this happen. I am hoping that is not the case. Again, I started wishing we just had a "normal" case of ALL, not high risk. I wish we could follow the "normal" treatment protocol, but we cannot. Allison is becoming known in the clinic for all of the bumps in the road that she is experiencing. I hate it.

So, she is going to remain "accessed" for the next ten days. That means she has the tubing coming out of her chest. (no swimming) Home health care will be stopping by our house daily to give her the antibiotic. I guess we will know if there is a problem if the fever keeps cropping up. She seemed pretty good today, except for a headache from her chemo, so I am hoping that the antibiotic is doing its thing.

So it has been a roller coaster ride here lately. Jerad and I felt down last night. She felt so bad, still had the fever and we were worried. Then, this morning, she was happy! Playing baby dolls with her sister, talking, etc. So Jerad and I felt really good again. Then we hear what the doctor tells us about the infection, and we feel down again. All in the matter of a day. We are seriously just flying by the seat of our pants. We could be good, and then later in the day bad. We just don't know. We continue to roll with the punches and hope for the best.

Sunday, July 12, 2009

Fever

Our outing to church did not go as planned. I was disappointed, but, hey, I am disappointed a lot these days. When it came time to leave home, she started crying that she didn't feel well and had a belly/headache. We really do have to push her a lot, so I figured that this was just one of those times. We pretty much carried her to the car against her will and started to head out. We took two cars, because I think we both knew what was going to happen. When we got to the church parking lot, she would not get out. Still resisting and crying a bunch and she got herself all worked up. We were two frustrated parents standing in the parking lot and trying to reason with her to just go into church, throw the pie, and leave. We lost the battle. I walked away and took the other two kids into church with me.

Luckily, Pastor Jordan came outside with all the kids and they were going to do the pie in the face there. So Jerad drove up in the car and she watched from her car window as 35 pies were smashed into his face. His sweet wife Katie said they would take a pie to the car and Ally could do it there. Nope. She still didn't feel like doing it. So Jerad did it for her. They left and we went on into church, halfway through. I hated missing even half of the service. I am loving going to Grace Crossing, I finally feel at home somewhere. It is our church family and they are being so kind to me and my kids through this all. If you live nearby and have any part of you that is searching for a new church, you should give it a try.

Here is Evan, not afraid to smash the pies!
Here is Jerad smashing it up....like father, like son, I guess
Hey, do you see that? I think this is the only smile that I saw all day. Thanks to Pastor Jordan for that! Bobo never fails to make it in the picture.
Ally spent the rest of the day on the couch. We could tell she didn't feel well. Maybe the daily chemo was catching up with her. She fell asleep when her best friend was here visiting. She slept a good while. Jerad and I went to go to our weekly bootcamp class in our neighborhood...we have been really trying to go. When we came back, she had just woken up and felt warm. Jerad took her temp and it was 103.5. That is scary high for a hemoc kid...we are supposed to go to the ER when it hits 101. So in a matter of 20 minutes, I had packed a bag, paged the doctor, and Jerad took a shower and got her in the car. I was SURE they would keep her, last time it was was a mandatory 48 hour stay. But this time, her ANC (the critical blood number that tells us whether she is susceptible to infection) was 2350, which is plenty high. I am not sure why it is going up when she has had three more doses of chemo (Fri, Sat, Sun)...a question that did not get answered by the ER doc. They just don't know that detailed stuff. So they gave her a IV antibiotic and some tylenol and she arrived home just in time for bed. She gets another IV antibiotic from the home health nurse tomorrow too. She was coming to our house anyway to give Ally the ARA-C chemo.

I am very leary of this course of action. I don't like the fever. It is still around 102...with the tylenol in her body. I had a thousand questions, but my husband went and we really didn't get them answered. The chemo she has been getting does have a probable side effect of a fever, so I am thinking that is the problem. But you just never know what is causing it. So now we are here alone dealing with this scary fever on our own. We especially need courage and strength today. I found this:

"Be strong and courageous, and do the work. Don't be afraid or discouraged by the size of the task, for the LORD God, my God, is with you. He will not fail you or forsake you."
1 Chronicles 28:20 NLT