Wednesday, April 28, 2010

Busy Thursday Ahead

Just a quick post. Ally is going in to the clinic on Thursday for more blood. Her hemoglobin was not super low, but Dr B wanted her to do it either this week, or early next week. She is on the way downwards in regards to that, so they know she was not gonna be making any of her own red blood. Ally is getting her first communion on Saturday night, so I also think they were trying to make her feel better for that. So we have a busy day of being at the clinic at 930...right after that I am sneaking her into see her dentist. She has been having some teeth issues lately. I am not sure what is going on or if it is related to the leukemia/treatment or not. She has not been permitted to see the dentist this entire time. You can't really risk getting your teeth cleaned, gums nicked, and have an infection enter the bloodstream. Her teeth have suffered too, but that is a whole other story. Tomorrow we are just gonna let Dr Roddy take a look and see if he can figure out her pain. After that, she is off for tutoring since she will have missed a couple days this week. Whew, busy day.

For some odd reason, I have really been missing my mom today. Lots of reminders...all in the same day. Sad. A couple weird things happened to me and I just have a feeling that she is back here with me. Jerad thinks she is holding onto us again...helping us to get through this next really hard month. I hope it is true. Ally could use a little guardian angel for what she is going to have to face in May.

Thanks to all who have already registered for the party. Lots of people just in one day! Here is the link again...I gotta figure out how to get it on the sidebar.

http://soh.dayton.llsevent.org/allysarmybattlescancer

Tuesday, April 27, 2010

Allys Army Battles Cancer (LIVE)

Today was another day, just like many others, where we went to the hospital to get Ally's chemo. Vincristin and Doxurubicin were the players today. She also started back up on seven more straight days of the dreaded steriods. It is a bit like Groundhog Day. Get up, do it again, park in the same spot, say hi to the same desk clerk, check in, weigh in, back to our room...you get the picture. It is a reality that I would rather not be living right now. But the fact of the matter is that I LOVE the people that are all helping Ally to fight off the leukemia. After 11 months, you get quite attached to these people. They have seen me through my tears and anguish, but also through my happy days when Ally proves herself as a walking and talking survivor story.

They all know me as a bit of a champion for the cause. Trying to rally the troops for the Light the Night Walk...to fixing up the patient playroom on the fourth floor....to my father who donated the TVs and Chemo chairs...long before we knew we would ever need them. I even had one of the doctors today ask me if I could help his son with his cause..and I will. I love to do good things for lots of other people and God has blessed me to be able to do so. Nothing is better than making someone else feel good or happy. And today, lots of people were congratulating nurse Sharon for the award that she just won. Because I took the time to tell somebody how awesome she is. And that made me happy too.

So noone was the least bit surprised when we walked into the clinic today with a videographer in tow. An awesome and creative guy, named Joel, who goes to our church was shadowing us all day. We signed all the releases, got everybody on board, and filmed a typical day in the life of Ally. Well, maybe not typical, because she was feeling so good, but one of the many days that we have spent there is now captured on camera. We even had a second star, her best buddy and fellow ALL survivor Amanda, who was in Almost Home getting a spinal tap. We are planning to show this video (well a shortened and souped up version of it) at Ally's fundraiser party on May 22nd. Hoping I can get it on the blog soon after that too. Hopefully, it will bring some sort of awareness of what pediatric cancer can do. And pediatric cancer is pretty much never talked about in the mainstream. Pink ribbons yes. Kids with cancer, no. Maybe this will be some small attempt at raising awareness.

And on that note...I have good news. A website specific for the Ally's Army Battles Cancer event on May 22nd is now up and running. All of you who have been wondering how to get your spots reserved can now do so at:

http://soh.dayton.llsevent.org/allysarmybattlescancer

Thank you for registering....this allows us to determine food quantities, seats, etc. But most importantly, we are just thrilled by all who want to join us in our latest endeavor.

Sunday, April 25, 2010

Enjoying the Quiet

Ally is continuing to tolerate her chemo very well. I haven't heard much complaining about anything lately. I think some of her medications are helping her symptoms too. Ally takes a lot of medicine at home. I think one day two weeks ago we added up that she had taken 13 medications that day (including her chemo) She takes a medicine 3 times a day now for her leg pain. It is actually an anti-seizure medication, but it helps with the damage done to her nerve endings. She also takes several meds for her stomach...and soon enough...Tuesday...she will go back onto the steriods. The medicines sometimes work, but sometimes they don't. I have tried all along to keep Ally's medications to an absolute minimum, meaning if we have the choice on something, I try to have her go without. Lord knows they put enough stuff into her body with the chemo. I am definitely still noticing the effects of the steroids with Ally. She is eating a ton of food and you can tell from her appearance. She seems to blow up a little more each day. Just as soon as you get the dishes done from a meal, she will ask for a snack. She even has food in her bedroom in case she gets hungry at night. She went to the store with me on Saturday and probably tacked another $50 onto our grocery bill. I cannot tell her no.

And so yes, she went to the store. We are trying to get any last "public place" visits in. We went to a store and a couple restaurants, etc. I am guessing by Tuesday her ANC will be quite low, and this is when we enter back into the bubble. We may have to pull her back out of school. It has been nice that she is going a few days a week lately.

We operated much like a normal family all weekend, which is always good. We watched our boy score a few goals in soccer and "graduate" from his early childhood religion courses on Sunday morning. His teacher made a point of saying how mature he is for his age and also how creative he is. This is something people used to always tell me about Ally...it is her personality. But for Evan it is probably more baptism by fire. He has had to be quite independent this past year...usually with one parent, but lots of times with no parent. I am proud of him. He doesn't let the jealous gene get into his life very often. This is huge when you are a sibling of a chronically ill patient. He is caring and compassionate and oftentimes will do anything just to get a laugh out of his sister(s).

We will start our week out with one more good day. Then we travel back to Children's on Tuesday for more chemo. Maybe some blood. And on that note, I will once again thank all the blood donors out there. But most specifically....thanks to Larry and Jeff and Jerad for putting three more bags of blood into the bank for our daughter. You guys are awesome to take time from your day to do something that can mean so much to someone that is ill. Thank goodness for people like you with big hearts and good healthy blood!


Thanks to everyone for caring about our girl and all the others battling cancer. We are truly grateful.

Thursday, April 22, 2010

Holding On

Wow. Ally continues to amaze me. She just got chemo two days ago and today she decided to take the dog around the block by herself. She was feeling yucky yesterday. Not today. She did about 5 hours at school and spent the rest of her day keeping busy or playing with her friends. I say all of this while holding my breath because I know it is going to get bad. But I just keep checking off days in my head (and on my calendar) of this last eight week intense stint. Somehow, by the grace of God, we are two weeks into it and still doing okay. Somedays, I can really feel as if the hammer is lifting off of me a bit. I am feeling more normal. I see the light at the MIDDLE of the tunnel, because I know we have a year and a half left, but it will be getting easier soon. Other days, I can talk myself back into depression and worry...praying with all my might that this disease never comes back into our lives again. Although we hate the chemo, we are also scared to have less of it. But at some point you have to go there and test the waters and hold your breath. It kind of reminds me of something someone once said to me about having faith in God. God can walk across the water...and you have to have the faith and step one foot after another that he can carry you too. I have never forgotten that imagery in my head. You can tell yourself that you have the faith, but you actually have to live that way. And it is hard. Very hard.

Pastor Gil reminded me of this too...a month or two ago, while he was speaking, I wrote this down: Proverbs 16:9 "In his heart a man plans his course, but the Lord determines his steps" It is a mystery to us all as to what the Lord has planned for us, but for certain it is no accident.

On a lighter note, thanks to all who have said they are coming to the party. This is a ginormous thing to plan and the work around it is being done by lots of caring people. All of the details behind it seem to swim in my head and come to the surface about 2:30 am. Every night. AAAAAHHHH. But anyway, we are working on getting an online source where you can RSVP and also pay your entrance cost. I am hoping it will up and running soon. But again, it is a casual event. Starting at 6pm on May 22nd. The live auction will start promptly at 7:30. We will have food, open bar, music, dancing, a silent auction, tickets for our car/cash raffle, possibly some Ally's Army gear, and a special lemonade stand run by the one and only Ally Barnett. (Please Lord let her stay well for this) Somehow it will all work out, because it always does.

Thanks for keeping Ally in your prayers. Continue to pray for Maggie (who is finally out of ICU) and Lincoln. We also pray for Bonnie, Amanda, Jackie, Katie, Tori, and Julia. And the Bohman family and the Lewis family. Whew. My kids can rattle all the names off better than me!

Wednesday, April 21, 2010

Sharon Ross

Ally made it through another chemo day. Tuesday was Ally's seventh day straight of steriods. Twice a day for seven days and it sends her into a complete state of silence. Nothing you can say or do will make her crack a smile or respond to you or anything by this point. So into the clinic we marched, but I feel the need to tell everyone that Ally is on steroids. Oh she is fine, I tell everybody, it is just the medicine. I don't want all her little friends at school, etc, to think she is sad or mad or upset, so I try to tell all the Moms to inform their kids. It is just really hard to see her in this way, but I do know that it will end. And today, after being off the meds for 24 hours, I did see little glimpses of my girl coming back. Thank goodness. So Tuesday she got her chemos, and we found out her hemoglobin was actually at a 9, so no need to transfuse! That was a shock to me, but a good one. Maybe it will hit next week. However, she was fairly sick from the chemo today and stayed home from school. We have her first appointment in Cincinnati with the radiation oncologist on May 4th. That whole thing is looming large over us right now. Large with a capital L. I kinda just want to get it going so I can get it over with.

While we were in the clinic, we saw one of Ally's favorite nurses...Sharon Ross. She is the fantastic nurse whom I wrote the essay about and then submitted it to the Dayton Daily News. So I told Sharon that I had sent in an essay and that she had WON. Of course, she would barely accept the praise and is quite the humble person. But we just love her. Then I got home and found out that Sharon had made a birthday cake for Ally's friend (and fellow ALL survivor!) Amanda for her sweet 16 last week. Some people just have a heart of gold. Anyway, this is what I wrote. I promised I would share.

Sharon Ross

My eight year old daughter, Ally, was diagnosed with leukemia (ALL) about ten months ago. The diagnosis was unfathomable to my otherwise healthy family, which includes two other young children. Ally’s treatment plans have included receiving chemotherapy once a week for the last ten months. We spend countless hours at the hematology/oncology clinic receiving chemotherapy and also dealing with the many horrible side effects that go along with it. Our daughter has been very sick, but we are always comforted by our favorite nurse Sharon Ross.
Sharon goes above and beyond the call of duty with Ally. First, Ally has a port underneath her skin which must be accessed every time with a needle. Ally is very particular about how she likes it done. Sharon is the most patient and kind nurse, always willing to give Ally the time and/or the encouragement that she needs to make the process go very smoothly. She makes Ally comfortable. At times when Ally has been very sick or in pain, Sharon has talked to her at her level to fully understand the situation. She always listens to every word we say and never dismisses anything as unimportant. She truly cares about our daughter, even visiting her when she has become inpatient in the hospital.
Secondly, Sharon is always very aware of the time commitment that getting chemotherapy involves. We have to be away from our other two young children a lot. The safety checks and general operating system in the hospital can make the process very slow. This is out of her control. However, she always makes every effort to complete needed tests quickly to ensure that our time spent there is as little as possible. She understands how tough it is to spend so much time getting Ally better and she ensures that our visits are very efficient. As a busy mother, I am so grateful for this.
Finally, “Miss Sharon,” as we call her, makes Ally’s time in the clinic fun. She has brought in several crafts for our girl to work on. She has even brought in her personal knitting needles and yarn to give Ally a project to work on. She patiently taught an eight year old how to knit, amongst running around with her other patients. This makes the clinic fun for Ally and she has never once complained about having to go to her treatments.
We are eternally grateful to Sharon Ross for helping to save our daughter’s life. She treats us with the care and compassion that most people save for their own family. We will never forget her.

Monday, April 19, 2010

Chemo Tuesday, upon us again.

We are heading down to the hospital for Tuesday chemo. She will get 2 different ones. I am suspecting she may need blood too. I panicked a little when she came home from school today (yes, school) and told me her chest hurt. I went through about 21 questions with her because several of her chemos have the potential of damaging her heart. It caused me a small panic attack because I have never heard her say once that her chest hurt. I called down to the hospital and they are suspecting it is actually heartburn (phew) caused by the steriods that she is taking. I gave her a Tums. We have one more dose of steriods in the morning and then we are off for seven days. But they will take days to get back out of her body. As I have mentioned on here before, the steriods really make her down. Today she was barely even speaking to us. She just floats and/or hovers around with a very sad look on her face. It really upsets me...I can't stand the complete lack of emotion...but now I have grown to know that it is temporary and will be lifted when she completes the steriods. This time it has been slightly better as she has been sleeping better. The steriods usually make it nearly impossible for her to sleep. I think we have helped this by giving them to her at breakfast and dinner instead of waiting until bedtime. Just a thought.

I wanted to share with you the letter my Dad has sent out for his Man of the Year Campaign for the Leukemia Society. This is also a link where you can donate to his campaign, which would be very appreciated. He mentions how he is doing this for Ally...but also for Ally's friends Ashley and Davey who lost their lives to the disease. I am really proud of my Dad for taking on this iniative. No one "wants" to spend their time asking friends for money. Fundraising is very hard work. But then, when you think about it, nothing is as hard as battling cancer, especially when you are just a little eight year old girl.

Check out his site and make a donation if you are so inclined. Little by little, maybe we can make a difference.

http://soh.dayton.llsevent.org/pledge/index.cfm?mid=VOTEBOB

Sunday, April 18, 2010

Overwhelming

The weekend is over and the kids are snug in their beds. We have successfully made it through a week with two kids having fevers and another getting a big dose of chemo. We are starting to plan for lots of things in May (Ally's first communion on May 1, the big celebration party on the 22nd, going to PA to see my grandparents, even a plan for my first ever garden...in collaboration with a few of my girlies). It is feeling a little overwhelming to me to have other things going on while I know this is going to be one of Ally's hardest months. As the calendar stands now, she will start her radiation treatments in Cincinnati on May 12th. That is also looming large in my mind. Two weeks of driving to Cincy and putting my girl in front of the radiation that could have some long-time side effects for her. It is hard to do, yes, but the possibility of the cancer returning on her brain is even worse. It cannot be an option. Thus, we move forward with treatment as Dr. B directs us.

So, I am trying to take a lesson from all that I have learned in the past eleven months. (WOW...almost 11 months now) And the lesson is to not get stressed out. Because all of these things mean very little if we end up back in the hospital again with any sort of issue. I guess I can plan a communion party in two days or rely on a whole group of other people to plan the 22nd. I have to make my focus on Ally and I will. I still have great trouble keeping up with regular things like email, laundry, birthday and/or thank you cards, mail, and messes in my house. Someday, someday, I will have time for all of these things. And more.

Ally is doing pretty well all things considered. Her biggest complaint is her joint pain...excessive pain in her legs, hips, ankles, etc. I feel so bad about it. She continues to take multiple baths a day to try to alleviate the ache. She puts the lovely rice bags on her throbbing joints (Thank you to Mary Nutter's mom for those lifesavers). We have even resorted to Vicodin a few times. However, you should know, she keeps going as much as possible. Shopping with my Dad, having her girls spend the night, going to her brothers soccer game, and hanging out with her cousins were a few of her weekend activities. The doctors always say the very best thing we can do for her is to keep her moving. And we do that. But by the time bedtime rolls around she is in quite a bit of pain. This is not something an eight year old girl should have to deal with...more like an 80 year old. She is also dealing with the effects of being on high dose steroids for a week. They totally put her into a daze and she offers little to no communication with us. She always appears sad, although deep down I do not think she is.

I will have to post a couple housekeeping items coming up here. First, the event called Ally's Army Battles Cancer, which is our party on May 22. We are in the process of getting tickets printed up. Once this is done we will have a few locations where you can purchase your tickets. This will serve as an RSVP to us and allow us to know how many are coming and plan for food, drink, etc. Also, some have asked if this is a "family" event or is it "no kids". We are asking that no kids attend. The reason being is that it is more of an adult party...beverages, dancing. But more importantly, we are going to be running a live auction to try to raise more money for our cause and that could be a bit hard with kids running around, etc. Don't worry, Ally is the exception to that rule and she will be at the party for the first hour or two running her lemonade stand and talking with everybody.

There is also a texas hold-em poker tournament being held as a benefit for the LLS Man of the Year campaign. I believe they are accepting the first 100 people. I do know they had an awesome time when they did this in the fall. A woman even won it! If you desire more information, there is a contact below.

May 6, 2010 6:30pm buy in, starts at 7
Texas Hold'em Tournament
call John at 937-427-6456 or email to johnk@synergybldg.com

Thank you for continuing to support and pray for our family as we continue this very long battle against Ally's disease. We are still very much in the depths of it, and appreciate all the love and support that we get from the Army. I continue to be amazed at the kindness, generosity, and love that has come out of this situation. Your prayers for Ally and our family mean so much to us all.

Thursday, April 15, 2010

I'm so Excited!

A while back, I was reading the Dayton Daily News and they had an essay contest for "Salute to Nurses" week (or something along those lines). We have a ton of good nurses at Children's, so I cut it out and set it on my desk. I was thinking about writing something up and submitting it. I think all of the good nurses are not recognized enough and they do such amazing work. Finally, on the day of the deadline, I sat down and wrote my essay about one of Ally's favorite nurses. I will share what I wrote someday......but not today. I have to keep it a secret because they just notified me that she WON!!! Woo hoo!!!! She doesn't even know it yet. Well at least that is what the gal at the newspaper told me. They will be notifying her sometime in late April and I think they are featuring the winners in the newspaper sometime in May. So now I am super glad that I took the time to write something, because she is one top-notch nurse.

Actually, I could have written an essay on several of the nurses...really...I might just have to do this again and again. We love all of them.

Wednesday, April 14, 2010

And we are off.....

Ally and Jerad made it home at about 5:30....she did fine with the spinal tap even though her Mama wasn't there. Jerad said it was one of the better ones she has ever had...no screaming, etc. She got the chemo injected into her spinal fluid, and also regular chemos Vincristin and Doxurubicin (its red). The Doxurubicin is the culprit that makes her lose her hair. AGAIN. She had just gotten a little peach fuzz back. She also got her monthly antibiotic infusion and an infusion of IVIG which boosts her immunity. I was very glad they did this considering her sister had the fever, and her brother was home with the fever that very same day. If Ally would get the fever, it would likely result in a hospital stay since her ANC is on its way downward.

Speaking of ANC, we are back into the world where it is going to be very low. No quick trips to the store or anything like that. No movies or indoor events. They allow school, but that is about it. Luckily it is quite warm outside and she is allowed to do anything outdoors. We really got spoiled by the last phase where her ANC was almost always above 1000. Of course we also paid for that with pancreatitis. And, speaking of pancreatitis, Ally never ever never ever has to get those PEG asparaginase leg shots again. They suspended her last two because of her bout with pancreatitis. I hope this is ok with the cancer cells (if there are any), but I am feeling that I don't want her to have that chemo again after what we went through.

So Ally pretty much felt yucky all day today. We were back to lots of complaints about her stomach and hurting all over. Not eating. But that is okay because she had gained the full 12 pounds back that she lost last month. Man, that girl can fluctuate her weight! She didn't feel up to going to school and I don't blame her. Evan was home today too. It was a long day filled with many requests by my children and I got absolutely nothing done. She did go outside some this afternoon and evening which is great. The girl is loving hitting baseballs for some reason and Jerad says she can knock them pretty far.

Last but not least, we found out that the Community Blood Center would like to feature Ally and her story in their annual report this year. And some other literature they are doing. We were honored that they wanted to feature her and Lord knows she has used enough of their blood. Jerad is working with them on the story aspect of it and I pulled out a few of my pictures. I will share it if I get a copy! As always, we are so grateful to the blood donors...

As for now, we are not sure where this ride is taking us...wondering if she will get worse before she gets better. Not much recovery time since chemo comes again on Tuesday. And thinking she will need blood by then too.

Thanks to all who have said they are coming to her party on May 22nd! I heard rumblings of getting a busload of people here from Junction City/Columbus. I will get more details on it out here soon.

Tuesday, April 13, 2010

Day 1 of Delayed Intensification II

We received the call late yesterday that Ally's bloodwork was finally acceptable for her to start treatment again. Her platelets were well above the 75 threshold at 124. So today, Ally and Jerad left for the hospital at 730 am...she will be getting a spinal tap, several chemos, and her monthly infusion of antibiotics. My heart is heavier than normal today. As they walked out the door my tears began. I am missing her first procedure ever today because now Evan has caught the fever that Carly had last Fri/Sat. He is doing alright, but I certainly didn't want to leave him with one of my caregivers and spread the germs to their kids. I imagine he could have already infected half of his school since he came home from school yesterday with the fever and I didn't know he had it. So although, I wanted to be with Ally, I must keep my other children safe and well too. It is so important to me that the siblings never be forgotten or left as an afterthought.


During the spinals, Jerad always stays right up in Ally's face. Like two inches away. She watches for her Daddy and he talks her through it. He is her protector during these scary times. She would choose him to be right there with her. I don't blame her. Daddies are meant to protect and Jerad is about as comforting a person as you can get. So Ally is in good hands today. My biggest regret about not being there is that I am not going to get to hear the Day 1 talk where they tell us everything we can expect for the next eight weeks. They usually go over a calendar with us and talk about side effects, etc. This is going to be a very rough eight weeks that will be punctuated by Ally getting cranial radiation in the middle of the phase (beginning/middle May). I have many questions, debates, and fears about this. I guess they will be answered later when we meet with her Radiation Oncologist in Cincinnati. I asked Jerad to either record the conversations on his phone today or take notes. We'll see. While he is the protector, I am more the keeper of medical information and the person the doctors talk to. I am the researcher and the calendar keeper and the one who has a brainful of information filed away from countless hours spent on the computer....following other kids and learning the best I can to protect Ally in that way. I am the one who asks all the questions. (I know, shocker) It will all work out.

We have been given some sort of strength to get through this ordeal. We will need all the strength we can get to make it through this next phase. Jerad sent me a picture that he took from his cell phone. It was the sky right outside Ally's hospital room window today. He said he thinks someone is peeking out from the sky today and watching over our daughter. And I think he is right.....Praying day 1 goes well. Tonight starts the dreaded steriods. God will help us through.

Sunday, April 11, 2010

Special Announcement

Ally was diagnosed with leukemia on May 27th, 2009. As you all know, this was a horrific day in the Barnett and Mills world. If you are still reading, you have followed us through this journey, or maybe you have picked up with us part-way through. If you are reading, you are a member of Ally's Army. An Army that we have built up and maintained contact with and garnered strength from and will be eternally grateful for. Noone said this would be easy, but without the Army it would have been impossible. I still look around at many events and see loyal wearers of the Ally's Army Orange wristbands. It still brings tears to my eyes. (Even last night at a good friends wedding....the groom, the best man, the parents of the groom...all decked out in their finest attire, but still supporting our girl with their wristbands....THANK YOU DETMERS)

Tonight I have a special announcement. To celebrate Ally reaching the 1 year point in her treatment, and to celebrate her entrance into her maintenance phase of treatment, we are having a BIG PARTY. And we would like to invite every single member of Ally's Army to come. Family, friends, teachers, co-workers, old friends, new friends, our hospital family, Ally's nurses/docs...anyone who has ever been touched by her story.

The event will be:
Ally's Army Battles Cancer
May 22nd, 2010 (evening, time TBA)

At the one and only Fox Hill

2037 Beaver Valley Road, Beavercreek

Food and drink have been DONATED

Several local bands will be performing

Silent and Live Auctions will be held
There is one catch. There will be a $25 entrance fee to get into the party. All of the proceeds (ALL!) will go to the Leukemia and Lymphoma Society to make a difference and fund a cure! My dad has taken on the noble task of running for the LLS Man of the Year campaign. He is trying to raise as much money as possible for the LLS on behalf of his granddaughter. If he can raise enough money (AND HE WILL) he will be able to name a research grant in Ally's name and help someone to research a cure for her specific type of leukemia (ALL) You all know that my Dad is an amazing philanthropist with a huge heart and he has done many good things for our community. He will continue his legacy as Ally battles her cancer and wins and we will not forget to MAKE A DIFFERENCE in the many lives that have been affected by blood cancers.

I will post more later as to how you can help him in his campaign. Fundraising is hard work, but fighting cancer is even harder, especially when you are just a little girl.

I would love to beat the number we had at Ally's Light the Night Walk last year. We had 400 people there for her. A huge goal, I know. We can beat it. We will have a fun party and celebrate and make a difference all in the same night. So please mark your calendars now: Saturday May 22nd. And spread the word. All are welcome. We would love to see you there and hug every single one of you for your support.
Ally and her Pa (my dad)

Bob with his grandchildren (minus one)....

They give him many reasons to make a difference in the world.

Shiloh

We have had a bit of a rough ride for the last few days. Not because of Ally, she has really been just fine. Despite Ally being okay, I suppose other stuff must happen in our lives. Our little Carly has been battling a fever this weekend and we are trying out hardest to keep the sisters apart to help Ally. Anyone who knows my girls...knows they like to be right by each other. And with a heavy heart I write that our beagle Shiloh passed away on Thursday night. He had been sick for a while now with an enlarged heart. Last Spring, he went on meds for it and they told us then that he would probably only live a year, maybe less. He lived the whole year, and he lived it pretty happily, but towards the end he was coughing a lot and started retaining more fluid. He was looking huge with extra fluid. I had made an appointment to take him to the vet on Friday, thinking they would probably put him to sleep. But Thursday night....he just wasn't doing well. I carried him in from outside and set him down. He never moved again and I sat with him for about a half hour as his breaths got shorter and his heart was beating less and less. Jerad wasn't home, and I tried to keep the kids away and keep my wits about me. My friend Suzanne (who helps me with everything else in my life) came down and helped me out. She is a true friend having to witness all that and help me get Shiloh out of the house too. The list is a mile long as to why she is a good friend, and I can add this to it.

We rescued Shiloh from the streets of Junction City during Thanksgiving 1997. I tried to find him a home, because I already had a dog (Reilly), but that option didn't work out so much and he became Reilly's brother. I have always had beagles, since I was a little girl, and have a soft spot for them. It was his time to go, and now he is running happily through doggie heaven with my other beagle Bitsy.

The kids were so so sad. I have never seen Ally so upset about something. Our girl, who has remained relatively emotionless through all the trials of the past year, went to bed sobbing. Evan too. And this part of it is what breaks my heart so much. My kids have had to endure so many losses in the past year. It is not fair. I never lost anybody in my life until I was an adult.

Shiloh was buried at Fox Hill right on the edge of the woods. The kids are making a cement stepping stone to mark his grave.

Rest in Peace little Shiloh.

Wednesday, April 7, 2010

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.
video
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...)

video

Monday, April 5, 2010

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.

Saturday, April 3, 2010

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.