Emily's Beads of Courage

Ally had another pretty good day. Not quite as good as the few days prior, but decent. I can tell that her counts are on their way down. She just gets a little more sensitive about everything. We are starting to have some stomach issues again. We walk a fine line with that and it is just something we have to really try to manage. We had yet another good meal provided by another good friend (thanks Laurie). People keep wanting to do something to help us. I almost feel bad when people are begging to do something, but yet I cannot think of an exact task to give people. Jerad mentioned to me today (as we had a ten minute coffee break together...very rare, but fun!) that people want to help because it is their way of ministering to us and it makes them feel good. I agree! People seem almost let down when I don't have something for them to do. But I feel pretty ridiculous with the things that I think need done...i.e. clean out my refrigerator. Hah! So the meals are a very clear-cut way of helping, and trust me, it is a giant help. Getting to the store still seems like a big struggle for me, so it helps double in that regard.

I have been wanting to tell the army about this awesome program that the hospital does for all of the cancer patients. It is called "Emily's Beads of Courage" Emily was a little girl who actually attended Ally's elementary school and lost her battle with cancer. Her family funded this program in honor of their little girl. Basically, every time Ally gets any sort of medical procedure or test done, she earns a bead. This started from the day she was diagnosed. As you can see from the picture, her first necklace is already complete. Apparently, the leukemia patients will end up with no less than five of these necklaces. I have heard great stories about kids giving them to their Moms when the graduate, etc. They are definitely a badge of courage. Ally is quite proud of this necklace, as she should be, and we take it with us every time we go to the hospital. People see it in the hospital and she garners some sort of celebrity status because of it. (except usually I wear it because it is heavy) Some of the more noticeable ones on there are as follows:

Yellow: Chemo (12)
Red: Bags of blood (5)
White bones: Bone Marrow Aspirations (4!)
Brown/White Zebra: Pokes from a needle or shots (24)
Moon/Stars: Overnights
Navy Blue: Spinal taps (4)
Pink: scans or xrays (5)
Light blue: Clinic visits (4)

There are special ones for surgery, hair loss, extended hospital stays, having a central line, bad days :( and home health care too.

Finally, when we were having all of those bad nights with Allison, Jerad made her a promise. He told her if she started sleeping through the night and doing okay that she could have a sleepover with her best buddy Madison. So here they are tonight, on the couch, watching a movie and having a snack. As you can see, little sis thought this was really cool and horned in on the situation too. We are so glad to have our "third daughter" sleeping under our roof tonight.

Let the good times roll

We had another good day today. I am not sure how long this is going to last, so I am going to take it while I can! Her home health nurse came this morning and gave her another round of chemo. I think these are just small pulses of chemo...slow and steady. The nurse told me that she should be feeling pretty cruddy by Friday, as it takes about 7 days for this chemo to cause the blood level drops. That is what normally causes a lot of the problems for her. So I have that to look forward to for this weekend! Getting a little nervous already. In the meantime, I am just making the best of everything. We really have to capitalize on the good days when they come around.

The nurse today actually de-accessed her port...I know that doesn't seem like a word, but that is what they call it. So Ally was free and clear of any tubing, etc and was able to go swimming. And swimming is what we did. A little bit, anyway. I was a bit nervous about taking my two year old and Ally to the pool by myself. They are both very needy. My Dad was nice enough to take the afternoon off to help me! And my sister went with me too. Ally didn't do much swimming...never under the water or anything crazy. But she did sit in the hot tub and also floated around on the raft for a long time with her Pa giving her some sort of Chinese water torture.

We also had a very special family come to our house tonight. The Hahm family, primarily their 10 year old Alexis, with help from her little sis Olivia, made Ally a beautiful quilt. She had started working on it in the winter, and was going to donate it to Children's Medical Center. When they found out about Ally, they switched gears and made it just for her. It even has her name quilted into it. I was in tears over the whole thing and amazed that a 10 year old could do such a beautiful job. Missy was Ally's VBS teacher when Ally was three! Other than that, we really don't know them. Here it comes again, my favorite word, humbled. Just so thankful for kind and generous people in the world like the Hahms.

Speaking of quilts, Ally received another one last week. A dear friend of mine, who I used to work with at Iams, Chris Suchomel...well her mother Sandra made a special quilt for Ally too! With her name on it, soccer balls, crafts...all of the things that Ally loves. We took it with us to the hospital last Friday and it keeps her warm almost everyday. Again, someone who has never even met Ally, spending their precious time making something to keep her comfortable.

Finally, Ally's Aunt Amanda and Uncle Mike were in town from Florida. We haven't seen them since Christmas. They must have been shocked at the change in our little girl. In typical Ally/card shark fashion, she challenged them to a game of Uno. I think Amanda may be the first person on record to have actually won against Ally.

These days I am most grateful for my daughter's smiles, for no stomach aches, and for getting to sleep all night again. I am also grateful to all of you for helping us through this. We could NEVER do this without the support of all of our friends and family. Every single day someone does something nice for us. I could write a book about it. Well, I guess I kinda am. Thanks for thinking of us. We are grateful.

Independence Day(s)

You may have noticed that I took a small vacation from the blogosphere to spend time with family and friends. The primary reason behind this was.....drumroll please.....we had a good weekend! I prayed and prayed that we would be able to enjoy the Fourth of July holiday, just as any family should, and we pretty much got to do that. I have some pictures to post and everything. So let's get started on our journey showing how far we have come.

Friday night we didn't get home from the hospital until late, 6:30. Wow that was a long of day of chemo. I wasn't sure how it would affect her, but she has tolerated it well so far. These were all new drugs for her, so you just never know. Our friends were over, as is usually the case on Friday nights, pre-leukemia, and the older kids were hanging out with Ally up in our bedroom. We caught them looking so precious together viewing fireworks out the window. Sometimes life brings you moments to remember when you least expect them. Had to show you...
Ally did sleep until almost 11 on Saturday. I guess the new chemo is causing a little more fatigue. The weatherman started threatening rain for our Fourth of July which sent me into a panic because we had all planned the big pool party up at my Dad's new pool! It was opening day...the first day I was ever going to get to use it and I was not very happy about the rain forecast. So we headed up early, about 1, and I was fully expecting to come home in a couple of hours. But we didn't! We persevered and stayed and played in the pool until 10pm that night. I guess it doesn't matter if it rains if you are wet anyway. Because it rained all darn day. We had good friends, good food, a great place....and for Ally you ask.....well she had the enormous job of setting up the concession stand. Here is a video from the stand.....



I know, concession stand at a private pool??? Well that is just my Dad. A lot of you know him and a lot of you know that the man cannot do anything small. He takes everything over the top. So his new pool has a fully stocked concession stand, complete with a cash register and sliding window, and Ally is in charge of it. Which was also really great because her port is currently accessed and it was going to be a fairly big deal to saran wrap and tape her all up. Plus, she gets cold very easily. It kept her busy for hours, and we didn't even have to worry about her swimming. Her only water experience was dunking her legs in the hot tub. She also spent part of the day watching a movie with our friend Caroline, and another part of the day playing slider gin with the adults in the house. (and she beat them) This provided a small break for Jerad and I (only 2 kids to watch, neither of which were sick) and allowed some fun for us too.

Ally and Miss Lisa with their feet in the hot tub

Just a shot of the pool, because so many people ask me about it.

Evan trying out the big slide

Concession stand, open for business

Even my Grandma wore the hat

Its not that we didn't have pants on, we had our swimsuits on underneath.REALLY!..Coach B got us all these new WSU shirts. He is the men's basketball coach

So the guys had to show us up by picking up Coach B's wife, Paula. Whatever.

I LOVE this picture, even though it is slightly blurry. The little friends all watching the fireworks from the snuggly couch. (even Bobo) The Boohers have the best view out of their family room window.

This is just proof that Daddy is weird, per Ally's blog entry on Friday. Jerad, who vaguely looks like a skinhead with his new hair and pale complexion, with a sparkler in his mouth? Weird? Yep.

Sunday turned out equally as well. Ally's chemo nurse came to the house and gave her even more chemo. This only takes about a half an hour. (this also happened on Saturday). In the meantime, she decided that she wanted chocolate chip muffins. Anytime she wants food, which is rare, I pretty much bend over backwards to get it for her. So I found a recipe for them online and started rummaging around to see if I had the ingredients. Milk, nope, butter, no again. That is what you get when it has been 14 days since I stepped foot in a grocery store. With some borrowed help, we got them made. The kicker was: She wanted to make them. Another thing that hasn't happened in a very long time. She asked to do something that required her to exert a little effort. I like that. Progress.

I left and went to church with my Dad. Pastor Gil's "talks" as he calls them, have pretty much been giving me the strength that I need to get by all week. He inspires me so much and reminds me that God has a plan for all of us. This is just my plan. I don't know why I am travelling down this path of being a "cancer Mom" and I have stopped questioning why. God knows. I have left the plan for all of us in his hands, as it should be. It brings me some peace to turn this whole situation over to God every night when I try to go to sleep. Gil mentioned to me once that I have some influence over a lot of people now too. He couldn't believe how many people were following the blog and listening to our story. He even said something to me about having the gift of being inspirational. (like him!) So maybe that is part of why this is happening....so I can serve others and have some impact on how others view the world...but through the eyes of a seven year old fighting for her life.

Sorry, that was a bit of a tangent. After church, I checked my phone and Jerad had left me a text that Ally wanted Red Robin for lunch. So I called him to get her order, so I could swing by and grab carry-out. NO. OH No! She wanted to go to Red Robin. And eat in the restaurant like a normal person. We haven't been in a restaurant or a store in a month and a half. So we did. Her ANC count was very high on Friday, so we felt safe enough trying it...although they are probably dropping as we speak. So there we were. Party of 5. Eating in a restaurant. Her favorite: macaroni and cheese. It's the simple things that will get us by....

Here is hoping that our life continues to improve. That we have more good days than bad days. That we stop to enjoy the small happy things in life. Together. That we inspire. That we appreciate. That we serve. That we win each small battle that comes before us, and eventually the war. That we can declare our independence, against this disease!

Loooooonnnnnng Day

I am posting from the Almost Home Unit at Children's today. We have been here since 8:30 this morning and we will be here until six. I am sitting next to Ally and can barely keep my eyes open at this time. SO, in efforts to wake myself up...what better time to get the entry done.

Today, Miss A had another spinal tap. Dr B took care of the procedure, with three residents there to observe their first ever spinal tap. She does go under conscious sedation for that, so it does not hurt her. The only tears of the day were when they initially accessed her port. That doesn't even hurt, or at least that is what she says, because we put Emla cream on it to numb the skin. But she does get upset in anticipation of the needle poking her. The spinal fluid was again free of any cancer cells, which is why they keep giving her the methotrexate into the spine. Thank God for that . They started her IV chemo at about 1...and then they have to follow it with lots of IV fluids because that particular chemo is really hard on the bladder. They also did the ARA-C chemo, and will be coming to our house tomorrow between 11-12 for another dose.

The day down here is long. Luckily today we had a few visitors (thank you McKays, Mrs. Booher, and Pa). She requested Chinese for lunch. She has really been great today. Awesome spirits. I just told Jerad that she is as close to the old Ally as I have seen in a long time. Making beaded necklaces in red, white, and blue...playing everyone at Uno Spin...impressing her Dr and nurses with her red, white, and blue fingernails...doing a puzzle book...and watching endless episodes of Icarly. I bet I am the only Mom out there who has all the Icarly shows memorized. It is so quiet around here. Everyone is off for the Fourth of July holiday. Chemo schedules allow no holidays though...we had to keep on going.

So tomorrow is the Fourth of July. My Dad just finished building a pool at his house. It will be the first time that we are able to use it. And, he even has a 38 foot waterslide! It should be a really really fun day...we are having our friends up there for a little party. And the hometown parade too. I am just hoping HOPING that she is still in good spirits tomorrow and this current does of chemo does not knock her back. I don't want nausea, vomiting, fatigue, etc. I just want her to have one good day where she is actually feeling like a kid again. I want her to swim so much that I even talked to the doctor about Saran Wrapping the area around her port...it is remaining accessed until Monday for the home health chemo. So that is my prayer wish for her today. Just one more good day and then we will take it as it comes.

I just said to her "Ally, is there anything you want to tell your followers on the blog?? I can type it here"
And she said "Tell them that Daddy is weird"
See....the old Ally is in there. Just waiting to bust back out.

MRD is .45%

I am very sad today as I write this entry. We did not get the news that we were all praying for on the minimal residual disease. We were hoping that the MRD would be less than .1% and she would follow the "regular" course of treatment. This did not happen. Her MRD was actually at .45%. I knew when Dr. Broxson walked into the room that he was going to tell us this. I could tell because he was carrying his giant post it note sheets of paper to post on the wall and several books and binders. I knew we were in for a new medical lecture.

So what does this mean? First of all, it is confusing. I read and research about leukemia all the time, and it is even confusing for Jerad and I. Basically, how quickly the leukemia cells disappear after treatment starts is a factor in her prognosis. If there is zero blasts in the bone marrow after 14 days, the child is considered a early rapid responder. Remember Day 14? The euphoria we felt because she did in fact meet that criteria. She was clinically in remission at that point. But now scientists are using special biochemical techniques to measure the residual leukemia....this test is 1,000 times more sensitive than the one that measured her at zero blasts. And she does have that .45% of residual disease.

For Ally, this means a change in her treatment plan. Instead of having 7 months of very intense weekly chemo, she will now have 11 months. Towards the end of the 11 months she will also have to undergo 6-8 doses of cranial (head) radiation. This will be done in Cincinnati. All of this is done in an effort to keep her survivability rate at 80%. Children with the MRD do have a lower chance of survival because of the increased chance of relapse. We are hoping that the research studies and the more intense treatment brings her percentage up. Even in the 90's, children with this MRD did not fare as well. Dr Broxson showed us a chart on this and I really wish I never saw it. But he also reminded us that they have made progress, even since the 90's, with every new clinical trial that occurs. We won't know how her clinical trial fares until years from now, but he said they always improve upon the one before it. And she's a girl, and she's less than 10, all good things.

Here is the real kicker. The statement that pretty much knocked me (and my husband) out of the chair. They have never had a case where a child was 0% on the Flow Cytometery test (the one they did locally) but showed a positive MRD when sent out. Never. Maybe somewhere in the US, but not in their experience. So here it goes...my bad luck...whenever there seems to be a very small chance of something happening, well it happens to us. Ask my sister or my Dad about that. We dealt with that all the time with Mom.

Ally really doesn't understand much. She was there as the doctor told us everything, but I can't imagine that she grasped too much of it. She knows she is going to have to have more medicine and it is going to take longer. I did break my "no sorrow" rule and cried in front of her today. In my opinion, today was even worse than when she was originally diagnosed. Jerad and I are pretty much devastated. We will eventually build up the resolve and the strength to guide her through this, but today we are down. We are sad. Who wouldn't be? I feel bad even posting this and bringing down the army.

On a brighter note...is this brighter? i don't know...her ANC was over 2000 today. Which means that she can begin the consolidation phase of her treatment in the morning. She will have another spinal and a 30 minute dose of cyclophosphamide followed by four hours of fluids. She will also start two doses of daily chemo. One is Cytarabine, given through her port, and we will have home health nurses come to our house to administer this. She will also take Mercaptopurine chemotherapy by mouth for the next 14 days. We will spend the fourth of july day off of work down at Children's. He told us plan for eight hours. I am anxious about starting a new phase and will have to learn how all of these new drugs affect her. I hate the side effects.

But since her ANC was over 2000, she was allowed to go anywhere today. That isn't going to happen all that much so we felt we had to take advantage. So Jerad took Ally, Madison, and Evan to the Hannah Montana movie this afternoon. A little diversion before we start back up.


Sorry to disappoint so many followers on this day......

Good Day

I was surprised when I woke up this morning and realized that Ally was only up once last night. What a huge, huge improvement for us. Seven straight hours of sleep can make a huge difference to my level of patience throughout the day. So then, once Ally got up, I asked her the question that I regularly ask 20 times a day "does your belly hurt?" I almost fell over when she said NO. I have not heard that response in weeks. The day was definitely looking brighter at that point.

Another thing that I have realized is that I can't keep going at this pace. Lots of people that are going through this have a two parent care team, optimizing FMLA or whatever they can. I was shocked to learn about how many parents just flat out quit their jobs to take care of their cancer stricken kids. Other people use nurse aides and/or nannies. It is quite a bit to do primarily by myself, not to mention that I have two other younger kids. So, although I don't want to leave any of them, I am trying to think of some options to get us through this. Even if I just have someone in here a few hours a day, a couple days a week. It would be something. I am tired. I was tired before this even started...I had been a nurse to my Mom for the better part of fifteen months. I don't want to sound weak. I am just trying to be realistic. So I am gonna keep thinking about that.

Today I had our backyard neighbor Abby come over for a couple hours. She just took the younger kids down to the basement and outside to the playground. What a HUGE help this was. I got to do a project just with Ally, which I can never really do with the younger ones around. And they had someone to play with them and not trying to push them off. Later in the day, our twin babysitters Jackie and Jenny came over and gave full pedicures and manicures to Ally and Madison. They even brought a foot spa with them. This let me have an hour or so just with the little ones. We went down the street to the playground. I just feel better when I can devote some quality time to each of them. It helped that Ally really did have a good day. She only mentioned her stomach maybe 10 times all day (less than usual), so I am hoping we make a breakthrough. She is still not eating much. I am sure she will be down over 10 pounds by tomorrow.

I had an idea. These friends of my Dad, Reid and Susan Murphy, live down in one of our favorite places: Longboat Key, Florida. We have vacationed down there for about 20 years. They sent Ally this hat (and a multitude of other things) from the local aquarium down there. (thank you!) I thought it would be a fun idea to have people send Ally some unique hats from different parts of the US. If you go somewhere different on summer vacation and see a cool hat, she will probably wear it. She is wearing them everyday now. Her Aunt Shay even made her a hat recently...very sweet. On our end, we are working on some special limited edition Ally's Army hats right now too. Look for those to come out soon.

I actually think I am starting to get sick now...just a cold, but it is not good to be around Ally with her weakened immune system. So you might notice this is an early post and I am going to bed. I am nervous for our meeting with the doctor tomorrow. Praying for the MRD to be below the threshold. I am also nervous about her blood test. I want to move on already...into Consolidation which is the next phase of her treatment. A few prayers for my little girl who is quietly inspiring people every day.

Swim-a-Thon Day

The swim-a-thon took place this morning, and we all five made it over there by 9am. Quite a feat! I was just amazed when I looked in the pool and there were swimmers everywhere swimming up and down the lanes. They told me that 170 kids swam today...all raising money on Ally's behalf. Some of the kids usually go to the evening practices, but they told me that parents had taken off of work just to bring their kids to this event. How many times am I going to use the word humbling? Well at least one more time, because it was just that. I can't wait to find out the final amount of funds raised for our children's hospital.

Rob Dotson, who is the head of the organization, and also husband to Melissa who I know from working on the school levy, was so kind to Ally. He presented her with an Idle Hour shirt and also this hat that had been custom embroidered with her name on it. She met all of the coaches again and watched the swimming, primarily focusing on her little cousin Aly who was in the pool.

Here is Evan wearing one of her swim caps. He says he might swim next year too.
The bald family, luckily we never go anywhere!
A bunch of the swimmers got out into the freezing cold air to get their picture with Miss A. It was good for them to see who they were swimming for.
This is Rob, who has been very kind to our whole family. I am so appreciative to him. Next year, hopefully, she is out there swimming as a Sailfish. THANK YOU IDLE HOUR!

Her stomach pain is still in existence. It seems maybe slightly better, but not much. My motherly intuition is telling me that something is still wrong and it is not just the overuse of Miralax. She hasn't had any in two days. How long can it last? So I am fearful that more tests will be forthcoming.

The doctor also called with her ANC number. It is low still (in the 100's) and it needs to be 750 for her to move on with the next round of chemo. We may be looking at a week off. We will know after her bloodwork on Thursday. It might be good for time off...give her a break from the side effects, but it also opens the door up for those leukemia blasts to start creeping on in. It is a catch-22. Most things are right now, so we'll just continue to fly by the seat of our pants and wait to see what happens.