Constantly in flux

Well the update on Ally has changed yet again. I guess we are learning all about being flexible this week. Lots of scheduling, trips to the blood lab, and phone calls have ensued. After taking her in today, I found out that her platelets have still not gotten to the threshold of 75. They went from 57 to 64. Not quite ready. (normal is about 150) This explains why she bled through the band aid so quickly after the finger stick. We wanted to go Friday, but turns out that they are too busy up in the almost home unit where they do the spinal taps. Bummer. They are also too busy on Monday. Who knows, there must be a whole lot of spinal tap action going on. They only allow 3 per day. So I guess we will wait until Tuesday. This has its pros and cons...good weekend, but this now pushes her intense treatment on into June and past the one year point. I just wanted to be done with it by May 27th, the one year anniversary. It was only supposed to take 11 months, but the delays end up eating up valuable time. It also means our "day" for the next eight weeks is Tuesday...which we wanted Friday because that helps us out in getting childcare for the other two kiddlings. ho hum We will deal with it amongst everything else.

Secondly, for months now I have been wanting to share a special song with you. I keep wondering how to share it, but I finally figured out how to do it. It is Allison's "Song of Love" There is an organization called Songs of Love that write and record a song for children with a life threatening illness. (again, I hate those words) I sent them a little bio on Ally and they included everything in the song from Bobo (her stuffed animal) to her siblings and dogs to her best friends names. They talk about her liking soccer and swimming and Hannah Montana too. It is kinda cute. Soooooooooooo.....if you watch this little video you get a two for one. Our Easter pictures from Junction City and Fox Hill and the song playing in the background. I just wanted everybody to hear how cool the song is. The kids love it and we are quite grateful to the organization for doing this for our daughter. They call it the "medicine of music.

And one more little thing. This is a video of our girl Ally doing the egg hunt this year. I had to publish the clip, not super exciting, but I wanted to have it for my Gramma Ruth. She missed the hunt this year because she wasn't feeling very good. So here you go Gramma....your great-grandkids in action. (press the side facing triangle...)

Change in Plans

We had a great Easter. I will post pictures later (too busy watching those Butler Bulldogs in the Nat'l Championship to do it tonight) We had a fun Easter morning at home with an egg hunt. Then we hopped in the car and drove all the way to Junction City (Jerad's hometown) to have Easter with his extended family. We didn't even tell Grandma and Grandpa we were coming...we pulled off the best surprise ever when Ally hopped out of the car. She hadn't been there in a full year...last Easter was the last time she had gone. Technically, we aren't supposed to take her more than an hour away. The reason being....if anything would go wrong and she would run a fever, she has to be hooked up to IV antiobiotics within an hour. I would NEVER EVER want her to go to another hospital...just transferring her records would be a giant task. So we don't venture very far. Ally had been doing so good and we knew her ANC has stayed high so we decided to take a risk. And our risk taking paid off...thank you God for protecting her during the trip. 7 of Jerad's aunts/uncles were there and I think they all loved getting to see Ally for real...not just on the blog.

We drove two hours back in the car...just in time to make it to my Dad's house and our extended family Easter. Dad has always been a champion egg hider and we have never missed an egg hunt. The weather was perfect and the kids set out for the meadow to overfill their baskets with eggs. We all pull together quite well, sharing the work, to have a tasty and plentiful Easter dinner. This used to be one of my Mom's strong points...she could cook up a feast for many, but we made due and got along fine. We are learning.

Today, in the midst of our last day of spring break we ran Ally to the outpatient center to get her blood tested. Turns out her ANC was plenty high at 1850, but her platelets were only 57. This means she is delayed and can't start treatment yet. We are gonna try again Wed with plans to admit her on Thursday to start day 1 of her last intense phase of chemo. A little disappointing, but there is not too much we can do about it. They also informed me that her hemoglobin was low (7.6 and they transfuse blood anything less than 8). They asked me if she was symptomatic with headaches or fast heartbeats, etc. I said to Robbie...let me tell you this...Tell Dr B that she rode her bike four miles the other day. I told her that Ally was doing great. Robbie said she could tell that Ally was rebounding as her monocytes were very high (the baby "good cells") and they we didn't have to transfuse but will need to check again on Wed morning. Come to think of it, she rode her bike about two miles again tonight. The exercise is just so good for her.

So we have a few more days until we start this last phase. It is going to be the hardest phase yet. It will definitely bring about low counts again (which we have been spared this for the last two months and we are now spoiled). She will become neutropenic and will almost certainly get another fever. I am guessing early May. We will be confined to our home again, except for our frequent trips to Cincinnati to get radiation. So it is gonna be one big last push but we can do it.

More pictures later and hopefully we will start on Thursday. Please continue to pray for all of our cancer family. Especially Lincoln and Maggie. And another little 4 year old girl Brynn who is nearing the end of her life.

Happy Easter.

Wow I haven't posted since Tuesday. I saw my friend Laura today and she said she had figured me out. When things are going good, I don't post. And she is right. We get all caught up in regular life things and this week has been spring break so we've tried to make life a little extra special. No news is good news.
Ally made it past the warning point and then some. She is doing really well and was quite able to enjoy her spring break which was a blessing. Jerad took the day off work on Friday to actually do something fun. In the old days, Jerad and I spent a bunch of time on the bike path out towards Yellow Springs. So we packed up a picnic lunch...got all the bikes into or on the car...and off we went to show the kids our old favorite spot. I am fairly certain that we may be the only parents of someone with leukemia that think that taking their child on a long bike ride is a good idea. We rode out two miles and then turned around and rode back. We stopped somewhere in the middle at a covered picnic table and had our Good Friday meatless lunch. Ally never complained once. (Evan, well a few times, but he was a trooper too). Carly sat in the bike trailer that Jerad was pulling and sang almost the whole way. We stopped at this beautiful horse farm and watched a horse learning how to do jumps. The weather was perfect...the scenery made me think we were on vacation. Yes, it is a scene straight out of "leave it to beaver" or something like that. And that isn't typical for our family. No, we belong on Grey's Anatomy...a show I used to love, but now can no longer stomach even a glimpse of it. No thank you to any medical drama.
So, to summarize, Ally rode a total of four miles! Yes! We are the parents that push her along sometimes, but it is for this reason that she is so STRONG. If we let her lay around all the time, she would have much more trouble bouncing back all the time. You gotta love her determination to be a normal kid. It comes out when she is feeling good. I am proud of her.

My family on the path

All three of my babies...
This picture does not due it justice...the beauty of the hills and the horses...
Loving the ride

We finished our fun day by getting ice cream at the local dairy, feeding the animals, riding their farm train, and then coloring Easter eggs with her cousins at our family's Good Friday fish fry.

Crafty girl made some cool eggs...
Evan LOVED doing the eggs this year.

As I sit here on the eve of Easter I am somehow remembering Christmas Eve. Me, home, doing everything by myself and feeling sorry that our family would be apart on Christmas morning. Yet another thing ruined by the disease that entered our lives 10 months ago. But on THIS day we are grateful. So grateful to be celebrating a major holiday at home together. And with our extended family. So grateful that our daughter's leukemia is in remission and that she has the strength to enjoy a bike ride. Grateful that God put Ally into our lives and gave me the power to take care of her and watch over her while she teaches so many people the simple lessons of life. She is a source of inspiration to so many. It is no accident that this has happened to us. We were chosen for this journey for some reason that we will never know.

Let the resurrection joy lift us from loneliness and weakness and despair to strength and beauty and happiness. ~Floyd W. Tomkins

Happy Easter to Ally's Army. THIS, my friends, was my favorite egg that she created.

Our Days in Pictures...

Today I have an update in pictures. I have been taking a bunch of pictures lately, so I will share. A lot of them are of my girl Carly...not trying to play favorites, but she is the cute little one at the Easter event. (and then my camera ran out of batteries) Our week is going much better than planned. Ally is really feeling pretty good....I can tell she is a little down, but not much. I am starting to wonder if she needs blood. She needs it so much that it is always in the back of my mind. But so far, the "warning" has not come true. This sort of holds true to our history of things cropping up on us when we least expect it. (and sometimes not when we DO expect it) Thanks for thinking of us, and here is what the Barnetts have been doing.

Carly girl got her first (very first) haircut. I can't believe she is a few months shy of three years old when she got it, but its true. I didn't want anyone to take my baby's ringlet curls away. Phew, they are still here even after the haircut.

She kept calling it her "Princess Haircut" and it took place in Mrs Booher's kitchen by Mrs. Booher's hairstylist. Carly ran home and quickly put on a princess dress when she was done. Check out the fancy hair style.

We went to an Easter party in our neighborhood. Here is the princess again with her Daddy.

Carly was not fond of the bunny and is MIA.

However, she was quite shocked and happy to find candy in the eggs.

The big girls always take care of little Car-Car.

Her brother was pretty sweet watching her find eggs too.

And she loves cupcake frosting...I luva her face

Last Friday it was hat day at school. If students pay 50 cents, they can wear a hat with money going to the Leukemia and Lymphoma Society. A lot of kids wear Ally's Army t-shirts too. Have I mentioned that I love Ally's school????
Last but not least, one of the coolest ideas....EVER. My college roommates from Miami wanted to treat Ally to something fun. They were so inventive. They hired a caricaturist to come to our house and draw pictures of her and her friends. The kids absolutely loved it. I thought they would like it, but they stood by the artist almost the whole hour watching him. They LOVED it. And they each went home with a customized drawing of themselves doing one of their hobbies, etc. Just very cool! Thank you Alli, Kelly, Jenny, Lisa, and Kate. I love you guys for thinking of us!

Seeeee.. They were so fascinated and giggly about it. FUN STUFF.

This is Ally's. If you knew my Mom, you will see that this is almost an exact replica of my mother. Wow. Of course she chose to be painting nails.

Princess Carly Anne...

and Evan...playing the Wii.

We did get a picture of Jerad and I too. Some people that were here can attest to my thought that he looks sort of like a prisoner in our drawing. Too scary for the blog.

It is supposed to be over 70 degrees for the next five days so I am hoping we can enjoy the nature of spring. Trying to plan a bike ride/picnic and a nature walk if our girl is up for it. We shall see.

Thanks for checking in!

Spring Break begins.

Ally finished up four STRAIGHT days at school on Friday. She got out of school a bit early for Spring Break, but 15 minutes after arriving home we were back into the car for chemo. This day was a little different, because we were taking her friend Joshua with us for the afternoon. I was thinking it would be a relatively quick one (two hours or so) and that she would enjoy having her friend there to pass the time and play some games. And she did. They played several games, did some sand art crafts, watched a little iCarly, ordered ice cream from the cafeteria, and showed Joshua all around the clinic. Dr Dole even came into to examine Ally and said "Josh...how bout a free check-up?" to which he meekly said no thanks. Even though most of this seems like fun and games, she was there for one purpose only and that is to receive her chemotherapy. And to us, it is a quite normal, quite regular experience, but to Joshua I am sure it was not. We made it fun, but he still sat very still in the corner as the nurse accessed Ally's port with the needle. I told him that she wouldn't cry....she is well used to it by now. We went through our usual routine....take the shirt off, wipe off the emla creme, cleanse the port site with alcohol. Then, she lays back, Bobo right on her, and I grab both of her hands tightly while the nurse goes in for the prick. If I don't she gets kinda slappy with her hands and she knows this. It is just instinctive. When we were doing this, I looked over to Joshua and he had a small look of fear in his eyes. Then he put his hands over his face and just stopped watching. In a matter of seconds, it was done, and they went back to their regular business. I said "See, no big deal right?" But really, Ally's friends know very little of what she goes through when she is at the hospital. Luckily, most kids in America know nothing about it. But maybe today there is some small bit more of understanding as to what she does go through. And she is the bravest girl I know.

She got her final (FINAL) dose of chemo for this phase that was called interim maintenance. Be gone with you interim maintenance. BE GONE. This time they gave her a huge (the biggest yet) dose of methotrexate. It scares me really bad. The doctor came in and gave me a warning. He said...because of her counts remaining high, he had to give her an even higher dose of the mtx. He said it was a nearly toxic amount and not to be surprised if she ends up back in the hospital by Wednesday or Thursday. It takes a while to hit her, but it could bring about some more severe stomach and/or joint pains. This time he told me not to wait...to bring her down sooner rather than later if she is suffering and they could try to mitigate the effects. I have never really gotten a warning like this. I am not sure I like the word "toxic" when referred to the chemo they just put in her veins. The warning is scary and it has caused me to be up at night here the last couple nights with worry.

So, the kids sat and played their games while the machine infused Ally with the toxic stuff. It all appears very innocent. I tried to just pretend it wasn't happening, but that doesn't last very long. And now, spring break is upon us. Lots of people are traveling or visiting family or at the very least coming up with a list of things to do that might be fun or different. We are not. We are just going to lay low and hope that the warning does not bode true for us. And it might not. She has done amazingly well for the first 36 hours or so. No complaints yet.

Oh, and when Spring Break is over and the kids go back...well that is April 6th. But that same day, Ally is scheduled to start her last intense phase of treatment with a spinal tap at the hospital. This phase will last eight weeks and will also include 10 days worth of trips to Cincinnati where Ally will undergo cranial radiation. On top of some very intense chemo....they don't stop that either.

We are on about mile marker 23 of our intense chemo "marathon." Please give us the strength to cross the line into maintenance.

Normal

Ally is doing just fine now. See....we really needed these couple of days. She has enjoyed going back to school and even went swimming with her cousins and played outside a little bit. She is sleeping at night, for the most part, too. Hallelujah. Dr B put her on two new medicines (one for her joint pain and the other for stomach) I am not sure if they are working or if it is just that the chemo is out of her body. It is nice to see her smiling face and watch her being goofy. It is even better to see her wanting to eat! Trying to build up some strength (all of us!) so that she can withstand the chemo on Friday. It will be the highest dose of methotrexate given to her yet and then we are done with it for a while.

Ally's friend Amanda (who also has ALL) just hit her maintenance phase. Ally's friend Jackie (kidney cancer) has her last chemo on Friday. In a little over two months, our Ally will also hit maintenance. We will have more days like today. Keeping our eyes on the prize....please pray for all them.

God was with us....

So I know that God is guiding my family through these hardships. I know he is there and quite honestly is the one responsible for giving me strength when I feel like it is all gone. And today...well I needed a little extra boost. As I dragged myself into the hospital this morning with the pit in my stomach. I could hardly crack a smile at anyone (not really like me) and found myself getting annoyed at even the tiniest of things (for example, loud chewing). Again, this is not like me. I wasn't feeling myself and I wasn't ready for more chemo for my daughter. I usually am ready...somehow, someway, but not today.

Ally had to undergo a huge long ultrasound. Not just her pancreas. No, they had to do both kidneys, her bladder, her gall bladder, her spleen and her liver. What they were looking for, I do not know. I refused to ask. I just let them do it and prayed and prayed (literally through the whole thing) that they would find no abnormalities. It took forever. At the end, the tech said she had to leave the room for a minute to show the doctor and to just wait there. That is not how it worked last time, so again.....the pit in my stomach grew increasingly heavier. I started panicking...why the doctor, why all these new tests, what the heck was going on???

If you know anything about healthcare these days....you would know that the tech can't tell you anything anyway. I didn't bother asking what was up. So we left to go upstairs to the clinic for chemo. We waited in the waiting room for an excessively long time before being called back into the clinic. (did I mention how annoyed I was this morning??? well I was) After sitting for a long time, Dr B came walking by and stopped to talk to us. I asked him what the heck was going on and he said he did not know but would find out. Turns out everything was okay. They just had to go about things in a way that would make any mother scared, not to mention a mother of a child with leukemia!!! The bottom line is: God was with us. He had us right there in the palm of his hand. My bedside prayers in the ultrasound room were answered.

Not once but twice. Again, I felt God helping me along when I found out that Ally COULD NOT receive chemo today. I really in my heart knew she was not ready. But the protocol is what it is and they follow it. No diversions unless Ally's counts are off. Well I knew her ANC would be high (and it was >2000!) but her platelets were down to 23. They had to be 50! Oh thank you lord...rather than getting hit with two more chemos, she was infused with platelets instead. (thank you donors!) And she got another two hour infusion of IVIG which boosts her immunity. But no chemo. I knew she wasn't ready. It really could have broken her. And God heard my prayers. She is only getting a break for a few days...she has to go back on Friday for it. But a few days may give her little body a chance to come back closer to normal. And she needed it. So now we are looking at sending her to school this week. I think she has been off for a month. Next week is Spring Break and she can spend it recovering from Friday's chemo. They also took her off the TPN nutrition, and are trying two new medicines on her. One to help with her neuropathy and leg pain. And another to help her stomach. Both of which are still bothering her. I hope they work.

It is in these places of severe testing, with no way out, that our faith grows and is strengthened. For me, I have to hold on very tight to my faith. For without it, I would crumble at the door.

"Our burdens are our wings; on them we soar to higher realms of grace; Without them we must ever roam on plains of undeveloped faith." Mary Butterfield.