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.

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.

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)

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.......

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.

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.