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

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.

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

Hard night

Wow did we have a bad night last night. I hate to post about things that aren't going well, but this blog is not meant to be a happy-go-lucky story. It is real life. And I want to remember how things played out. I go back and check things from the past month on here all the time. So anyway, Ally is still having the dreaded constipation issues. She has decided that it hurts too much, so she is completely stubborn and just will not go. Even if she really, really has to. Jerad and I tried to go to bed at 10:45 pm. That never happens. We are the midnight sort of people. So sure enough, she started screaming, screaming at about 11pm. She screamed in pain for several hours. She would try to fall asleep, to make the pain go away, but it never lasted more than 10-15 minutes. About 2 am, after we had been back and forth to her room, the bathroom, begging her to go, demanding for her to go, Jerad laid on her floor of her room to go to sleep. Third night in a row that one of us (or both) have been in there to try to sleep. I think she did sleep until about 6 or so....restless though...and then another screaming episode. She continued to try to lay down and attempt to sleep most of the morning, but really spent a good part of it screaming. The chemo nurses were here from 9-10 and tried to talk her into going. The screaming is just blood curdling, like someone has put a knife in her. I can hardly stand it. I seriously almost run away...it is that bad. Jerad is stronger than me, thank god, and also has more patience, but it even gets to him. He said he couldn't hear out of one of his ears for a while this morning. I try to shuffle our other kids into one of their bedrooms with the fan on so they won't hear it. It is that disturbing. She did finally go to the bathroom around noon...13 hours after the screaming started. This is not a happy household right now. Jerad and I were just remarking about how little anyone smiles or laughs...mainly just when our friends or family come around.

Uncle Brad, Aunt Kim, and their 4 girls came for a visit this afternoon. It poured rain all day so we just sat in the house and visited. About dinnertime, Ally decided that she wanted Panera chicken noodle soup so all 11 of us went out. (her ANC was actually high enough, but not for much longer) What a sight...they have twin one-month olds (and two other young girls) and there we were with our bald child +two others. But we did it. Ally only lasted about 10 minutes before she was crying of a headache and I had to take to the car. Nothing is ever easy!
I am hoping that we actually get to sleep tonight. Might try for an early night again. We are going to TRY to go to Grace Crossing tomorrow. The youth pastor had been trying to get the kids there to raise money for a ministry project. He told them if they did that he would shave his head and they could throw a pie in his face. After church last week, one of the helpers stopped me and asked if they could bring a pie to our house so Ally could throw it at him. She had been very intrigued by this whole scheme even before we found out about the leukemia. I wanted her to go to church to see this. I asked the doctor if it was okay on Friday, and he said YES! (again, her ANC is above 200) She really does want to go. So hoping for no more issues, headaches, etc until after we are done with church. It is a huge deal for all five of us to go anywhere together. HUGE.

Thank you to all of the Ally's Army followers for your comments. We continue to derive strength and valuable information from them.

Day 42?

Is it Day 42? I can't remember anymore. I think it is. Poor Ally had another LONG day at the hospital. Just when I thought it might be quick, yep, she needed more blood. Her hemoglobin was 8.2, which after 8 hours NPO (no food or drink) was actually probably even lower. So she had another spinal tap, followed by a quick dose of ARA-C chemo, and then we waited and waited for the blood. First they have to do a cross match. Every time they check her for blood type etc...which I am not sure why they do that each time, I need to ask. Then we wait and wait for the blood bank to send it up. Then it takes 3-4 hours to transfuse. And by the way, for all of you special Army people who have been offering to donate blood for her, they don't really allow it. I asked today. You can go donate blood in her "name" to replenish the supply that she used, but we cannot have a one-for-one blood donation. But thank you to all those kind souls that offered (the Martins, Joey, Kim Jaros, Bonnie...you guys are great) Her blood type is AB+ (which I think is different than what I wrote before) but she can get A, B or O blood because her type is positive (whereas negative you cannot).

Her best buddy and cousin Bella and her Aunt Tara came to the hospital today. Having Bella there really helped her to pass the time. She is getting bored and tired of it all. You can only play Uno and Monopoly so many times. They even started hooking up some of Ally's extra wires to her Bobo (the white seal seen in every picture) and laughing and then I heard Ally say something about putting numbing cream on his port. Awwwwww.

We had the third partner in the hemoc group of doctors today. His name is Dr Dole. (that is pronounced Dol-ay). We had only met him briefly on one of our in-patient stays. He talked to us at length about her MRD being .45%, which is above the acceptable threshold of .1%. He suggested that we talk to Dr Broxson about getting a repeat MRD at the 3-6 month mark. This would be outside of the study that she is in. If she was still high at this point, he thought we could then consider an alternative and more intense treatment. So I am thinking what is more intense than what we are already doing? And he mentioned the dreaded words: bone marrow transplant. But then we have to consider that even with the higher MRD, about half the kids will be cured anyway. But half won't and will have to do something else. It is all too much to think about. Jerad and I both have the same accounting brain...numbers make us happy/sad/confident/not confident, etc. It is all so hard that I just want to push it out of my brain anyway. I can't even go there. I can't. It is in god's hands.

Which leaves me to the prayer above all prayers. Please pray that she will be cured just like everyone else that we have met that has gone down this road. Please pray that a bone marrow transplant will not even need to be in the realm of possibility for us. Enough is enough.

Happy Birthday Jerad!

Today we celebrated Jerad's 37th birthday. He felt really great when Evan informed him that he was almost 40. Ally was not feeling like doing much again today, but I did get her to do a few things for her Daddy. We all made him a big chocolate chip cookie for his "birthday cake". He has asked for that every year since I have known him. Look at what a mess it makes when you let the kiddlings make the cake.
I also had her help wrap all of the presents and make her Daddy a card. I know it doesn't sound like much, but I push her all the time to try to do stuff. Otherwise, we end up with a day full of TV. I am thinking that she hasn't read a book since sometime mid-May, and that bothers me. We are in the process of getting her set up with an in-home instructor....our neighbor and friend who is also a retired school teacher, Judy Brower. Ally will get an hour of instruction for every day that she misses school. Which I don't know what the next six weeks will bring, but she does not seem ready to be able to handle a school day yet.

Our babysitter Jackie came and stayed with the kids tonight so that we could go out to eat with our friends for Jerad's birthday. What a treat that was for the both of us. Just to get out of the house is really a treat for me. I am feeling increasingly more trapped and like these walls are closing in on me. It is summer and I don't think I ever stepped outside all day until we went to dinner. That gets to me. The kids did fine for Jackie, which also made me really happy. We came back and had presents and cake. Here is proud Daddy with his three biggest fans... (and thank you Lisa Bauer for that Wisconsin hat for Ally, which Carly promptly stole)

And thank you Mr Booher for helping Ally to take her oral chemo medicine tonight. Every night we find a different way to get her to take it. Medicine taking is not so easy in this house. Lots of people have had their turn doing a shot of something out of a syringe with Ally. Brave Mr Booher wins the award for doing a syringe full of Fricker's Buffalo Wing Sauce tonight, without hesitation I might add.

Here's a little wish from me that the Barnetts get some sleep tonight. Last night did not see much rest in our house. Ally ended up crashing on our bed for the night. So I slept in Ally's twin bed. Jerad on the floor next to me. Evan woke up and was already getting upset about us going to the hospital so he ended up sleeping in the twin bed with me. Carly was the only one who spent the night in her own room. Weird. Not to mention that Jerad's parents called at 6:25 am!! to wish him a happy birthday. They get earlier and earlier every year. Note to Anne and John: Jerad said next year he will be unplugging the phone on the night of July 8th.

Tomorrow is treatment day. She gets another (another!) spinal tap....I think she has at least three more this month. They will also start her ARA-C chemo...this is just a push into her port and doesn't take very long. They will keep her accessed and we will have the home health care coming on Saturday, Sunday, and Monday for the daily chemo. I am thinking we may only be there a half day, but as soon as I say that she will need a bag of blood. Evan will be quite happy if we are home early though. He has really come to dread Fridays, poor little guy. For me, on the other hand, they end up being one of the easier days of the week because so many people are taking care of her. And the responsibility is not resting solely on my shoulders and weighing me down.

Please pray that Ally's doctors know exactly what to do to make our little girl better and with the most minimal of side effects. Please pray that God will take this disease away from us, never to return. Please pray that we all have the strength to climb this mountain and get to the other side, where normal days will await us.

Back Down

Poor Ally is struggling again. I knew it was coming, but I am not glad for it to be upon us. She was pretty lethargic today, not wanting to do much. But more than that, she had several episodes of real extreme pain. To the point where she is screaming so loud that I am wondering if the neighbors hear us. And there is nothing I can do to stop it. I feel so helpless. I feel bad for her and then I feel bad for me...and then it starts this whole downward spiral. I start to question whether I have the strength left in me to make it 11 months of intense treatment. (and then many more months of maintenance)

I am tired today. I had a bad night last night, not falling asleep until I saw the clock turn 4am. I am usually not too bad like this, but last night I was. It was not Ally causing me to stay up...it was me. A local boy here, Blake Laforce, just died the other day and he had ALL. He had received a bone marrow transplant and had some delayed complications. I heard about it on Saturday and it has really bothered me ever since. Always on my mind. I don't even know him, but I feel like I do. I started googling his name and found some great stories in the Dayton Daily News. He had a huge army behind him, just like us. A great family, it seemed. He was 18 when he died, after having the ALL for a year and a half. Then I stumbled upon the blog that his Dad kept for him. He was real diligent about doing it, just like me. Over 100,000 visits to his blog! It was over 100 pages long, and I didn't read it all, but I kept looking for similarities etc. I think I was torturing myself. I couldn't figure out why he needed the BMT, and I worry that we may have to go down that path. So then I started doing even more research on the BMT from my books and stumbled upon the potential life long side effects from having cranial radiation. And that part we do have to do. See the downward spiral that I sent myself on? I am like a gerbil in its little running wheel and I can't get out. And I can't turn off my mind and go to sleep like a normal person. And then I start thinking of weird stuff ...someone told me yesterday that those little baby carrots you buy in the grocery store are soaked in some crazy bad-for-you preservative and never to eat them again. Come to think of it they do taste a little different than say a regular carrot with the nice green tops. And to think, those tiny little things...that is what I used to worry about....