Thursday, October 29, 2009

Festive Day

Ally slept well in her new bed and didn't even arise until close to 10:30...that's just how comfy it was. She was back to being her normal self today. She was happy and eating and I even caught her humming to our music. It just amazes me how we can go from some really bad and ugly situations, and voila, back to good. I think that may have something to do with her age. I don't believe an adult would bounce back that quickly. So on these type of days, she is just a normal kid like everyone else her age. She pretty much followed me around like a puppy today....bored wanting something to do. This is again why she should be in school activating both her mind and her social skills. But I am going to wait until after our clinic visit tomorrow and a talk with the school nurse before I allow it.

Of course, I have 1000 things that I need to do because I just spent the last 12 days straight at the hospital, but oh well I guess they will get done at some point.

She really wanted to go to the WSU basketball team Halloween Hoops tonight. I was trying to keep it a secret, but she found out. She has gone to almost every WSU event since she was 6 months old. She has always been a loyal fan and even did a stint as a junior raider cheerleader. It didn't help that her best friends were going too. But once again, we opted out of something to protect her. I was scared of the germs and the cleanliness of the Nutter Center. Hopefully, her ANC will be high enough to attend some games this year.

This is one of the hardest things about leukemia. We just can't go to normal places and do normal things and that is pretty hard on everyone. We try to take advantage when we can, but the growing list of things we have missed is tough to swallow. With the holidays coming up, it is going to be increasingly hard. And we can't travel either, so I am hoping our families come to us a little this holiday season. Something tells me they will!

We did enjoy our first evening home together (Ally got home too late to do anything last night) We carved four big pumpkins, made some pumpkin seeds (which all three kids liked!), and just hung out together. Dinner at the table is always a good thing too. Sometimes...just once in a while...we forget our problems.
What is up with that Wal Mart baby with no pants on????She did a skeleton with a bat...


Jerad and Evan have done an awesome job decorating our house this year. We pretty much had zero Halloween decorations and that made our boy Evan quite sad. Which, in turn, prompted Jerad to go on a shopping and decorating spree and this is the result.


I am so glad that they did because it really did bring Evan joy. Again...the list is long of normal things that didn't get done in the process....but how cool is it to be five years old and have your house be FUN. If I could only convey exactly how much the little guy loves Halloween and his decorations....but I can't do it justice here.
Tomorrow I am going to take Ally into school for her Fall Party, and also stop in Evan's room. Then we are headed straight back to the hospital for bloodwork/check up and I guess we will find out our next move. I am really dreading it. Really dreading the next methotrexate. Will post the plan here as soon as I know.

Wednesday, October 28, 2009

Surprise!

It was a complete surprise when Ally started feeling even better today and they said she could go home!!!!!! They unhooked all of the tubes and took her off the morphine to see if she would go back to having pain. She was fine! One good thing about the mouth...it heals quickly. The mouth cells are quick dividing cells. This is why they take such a beating with the chemo (it goes after all quick dividing cells, mainly the cancer) On that same regard, they have healed up nicely. She proved to them that she would eat, and at about 7pm she walked back into our house with a huge greeting from her brother and sister.

After 13 days of having a tube coming out of her chest she is free! No more backpacks of fluid, no more IV poles, no IV in the hand, and hopefully not up all night going to the bathroom. She is free and laying in the comfort of her own bed.

Rest well my dear girl. Rest well.

Tuesday, October 27, 2009

Dr Broccoli

First of all, I have to post something about last night. Finally a good story to share. Jerad, as many of you know, is one of those people that is always the life of the party. He has always been that way and it is a good trait to have (most of the time). Last night, he decided to bring a few pumpkins to the hospital to carve with Ally....not knowing if she would participate, but just to give it a try. Well before long she had half of the kids on the floor in her room. Dave, Braden, Amanda, and Ally....all congregating with finally something to do. They ended up carving three pumpkins. I had actually brought Ally a green pumpkin on Saturday that I had picked from my Dad's pumpkin patch. She had a fantastic idea to make it into the shape of a piece of broccoli. See....her dr is named Dr Broxson, but sometimes we refer to him as Dr Broccoli. (thanks to Vicki Giambrone who told us that) Ally did the carving herself and I think she did a really good job. The kids just thought it was hilarious and the nurses keep stopping by to see it. Lots of snickers about Dr. Broccoli. Even the resident said he had heard about it before he even came into our room this morning. When Dr B was doing rounds this morning, he got a good chuckle out of it. He is just the sweetest man you can meet....always looking at our girl with these eyes like he has true empathy for her. So I am glad we could provide a few smiles around this place. I was proud of Jerad for having the party and the boys are already planning on coming back into her room tonight to carve more pumpkins. Who knows what they will come up with next.


Ally did work on the pumpkins (no talking though) but shortly thereafter she spiked a fever of 101.5 around midnight. I was worrying about this as it was slightly higher when I left at 9pm. They started her on yet another antibiotic and she hasn't shown the fever since. Hoping it was a fluke. Her ANC was at 40, so there is no chance her body can fight anything off right now. Her methotrexate level was finally .08.....11 days after treatment. So they removed her from the big bag of fluids. This was crazy considering she cleared the level within two days the first two times. She did end up needing a bag of blood this afternoon too. We just finished with that. She has an amazing amount of pumps and lines going into her body.
Lots of machines pumping lots of stuff and this was AFTER they took her fluid away
The good news is that she started speaking again today. Minimally, but she was speaking more than she has in six days. I am hoping that is a sign that she is turning the corner. She has also done a few more things today, and they are taking her morphine down just a little bit to see what that does. I am so hoping that she has turned the corner and will start to improve. We would love to be home for trick-or-treat...although lots of these kids won't.

And I can't believe we have to do yet another round of methotrexate again. One more time. I am scared to death, but trying not to think about it until the time comes. One thing at a time...for now we have to get her over this treatment.
Ally at 4pm today, no smiles, but UP.

Monday, October 26, 2009

No change

I am going to make this short and sweet before I collapse into my bed. The days are long, hard, filled with worry, and also filled with complete silence. Ally is still not talking..so all I hear all day is the drone of kids shows in the background. And the beeping of monitors. A visit by the nurse is my highlight. Tomorrow is the 12th day in a row at the hospital and sadly enough the 12th day I have had to find someone to help me care for the other two kids. I am especially grateful for the help I have received in that area. Today Aunt Jess took a day off work and drove down from Columbus to help. I don't know how people do this for so long. Everyone worries about Ally, but the other two are suffering too. We all are.

Ally continues to suffer and they have increased her morphine drip yet again. She still won't talk except a few scant words. We have developed hand signals for different things...potty, etc. She did arise for a little while today when the craft cart came in (imagine that) and she put together a few basic crafts before that wore her out. She has developed quite the reputation at the hospital for her drawing skills. This time she has drawings of gremlins posted on her door. They are seriously good. She also drew all the characters from Where the Wild Things Are the last time she was in. In great detail and she remembered all of their names even after seeing the movie just once. All of the nurses know of her artistic talents and the child life specialist brought her some special sewing projects for today that she had found. Everyone there is always thinking of her. She is one of the sweet ones to take care of I think....she is sweet and polite to the staff even in the midst her pain. That is just my Ally. She has always been like that and continues to be so even through the hardships. I am so proud of her and the way she handles herself.

With no end in sight, we just keep persevering through. There is little time for anything but caring for the children and I have barely seen my husband since last Thursday. Only a few small minutes when we transfer her over. Jerad worked today, sleeping at hospital tonight, and back to work tomorrow.

Did you know some parents leave their kids in the hospital with noone there? For days on end? Like it is a babysitting service? The thought left me very sad today. I feel bad even running down to the cafeteria and I often just skip meals altogether. What in the world are people thinking.

Thanks for the support. We love to read the comments. It gives me something to view in my silence and I just imagine you are there talking to me.

Sunday, October 25, 2009

Sunday Update

Ally continues to get worse. I was expecting it to get worse before it gets better. She is still refusing all talking and eating and doesn't hardly move. I just think she is trying to stay as still as possible to avoid any pain. The pain seems to be mostly in her throat where the sores are located. Unfortunately, her ANC has dropped to a very low point (130) which means she has no ability to fight anything off. She has no white blood cells to fight any sort of infection so they are also keeping an eye on her toe. (it was infected last week) Today they have increased her level of morphine to a point to make her more comfortable but not sedate her completely. We do not know her methotrexate level, because the machine in the blood lab is broken. They are talking about sending it to another hospital to get it tested (another boy up here needs the same test)

She really really wants an icee. And everything in the hospital is not working or they can't get it or something sad. I have asked and asked. Seriously, I would fly to the moon to get her whatever she wants. I think her Uncle Brad and Aunt Kim are going to bring one down here shortly.

Please keep praying for her sores to heal. They are talking that she will go on a delay before they do this same chemo again. She was originally scheduled to do another one on Sunday Nov 1. I can't even think about doing this again. But I also know they have to do it to take care of the cancer cells. I would love for my girl to be able to trick or treat on Saturday, but I also know we are going to be in the hospital for a while.

Several of her friends have been sending her videos to try to cheer her up. I asked her if she wanted to make a video back, which is nearly impossible because she is refusing to talk. She has been writing notes...so she sent this note back to her friend Madison. So many of you say you would like to see her, so here you go. You can even see that some of her hair is coming back...darker than it used to be.
Jerad and I are trying to hold up through all of this. It is not easy and my body is really hurting from sleeping (or actually not sleeping) in a chair all night. Evan and Carly seem to be a little off now that we are going on 9 days of them being shuffled around. We can all take it though...anything for our Ally. Thanks to the Boohers who have pretty much been taking them everyday and Grandma who drove down to help out yesterday. We keep joking that the Boohers should actually move in with us now that they are doing everything. Thank goodness we have friends like them. Not everyone does, and I always count myself grateful that I do. How can I ever repay?

Poor Ally was actually crying in her sleep. Just hoping that the medicine can do what it needs to and take the sores away. I was researching the sores and most of what I saw is that this is the #1 complaint and #1 most painful side effect that cancer patients go through.

Thanks for praying for all of us.

Friday, October 23, 2009

Expect the worst

All week long we have been going downhill. I kept telling Jerad she was going to end up admitted to the hospital. I somehow always have the mother's intuition with these things. A sixth sense.

Her methotrexate level only dropped to .31. She started complaining of pain in her throat, and later her mouth. In the middle of the night, she vomited and I thought I saw blood. Upon examination by Dr B in the clinic today, he determined that she had oral mucositis. Basically this is ulcers or sores all through the mouth, tongue, throat, and even down to the stomach. A lot of cancer patients get it and it is extremely painful. It also allows infection to spread into your body and can be quite serious. Ally was in so much pain she stopped talking. Very little eating. Her medicine was also burning the sores in her mouth. I heard the doctor say that she has a pretty bad case of it. The methotrexate is not leaving her system quickly enough and it is wreaking havoc on her little body with these side effects. Dr B asked her on a scale from 1-10 (10 is the worst) about how much pain she was in. She muttered a nine.

He had no choice but to admit her. They put her on a constant drip of morphine to stop the pain. They also gave her a button she can press every ten minutes that gives her more morphine if she is in severe pain. Because the sores are so bad she will not be able to eat. So they also put her on IV nutrition. This takes care of that problem. She also needs to have fluids to reduce the mtx levels. So, even though she has a port, they also had to start an IV in her hand because she has too many things to go in through one line. She was not at all happy about this. Big tears streaming down her face, but ended up getting it in like a champ. She is a brave brave girl. Nothing really phases her.

Of course, upon hearing she was admitted I broke into tears right in the middle of the clinic. I was sooooo sad because my Dad is having a halloween party at his house. She wanted this particular mining game/thing that she saw at the Soin's party for her birthday. Since we didn't really do a birthday party for her, he got it for this party...a late birthday present. She has been so excited to do it. And now she can't even go. And I feel bad about that and I feel bad for my Dad who was doing it for her. Ally didn't cry. No. She just sat and watched her mother sit there and lose it for a few minutes. I don't usually do that, but today I did. I sooo wanted us all to be together this weekend after being apart the last weekend.

After being there all day (week), Jerad came down to relieve me and spend the night with her. I came home tonight and put the other two kids to bed. Carly was messing around with a fortune cookie that she found in the pantry. She dropped the fortune on the floor. I thought, well I better see what this says and I picked it up.

It said "Hope for the best, but expect the worst"

And that is exactly my attitude right now.

Thursday, October 22, 2009

Another discouraging day...

Yet again. It was another discouraging day for us. I had great hopes to drive to the clinic today and be done with this round. Get Ally off of her fluid and get her feeling better. Only to have my hopes taken away again after waiting three hours for her bloodwork to come back. Her level was .48....only down a bit from the day before when it was .64. (needs to be .1)

This is playing out like a broken record. Every day, I drive down there. Say hello to the same security guard. Get up the elevator while everyone stares at my bald child with the mask on with the tubing coming out of her shirt and tethered to me. Check in, get a room in the clinic. The blood draw. Waiting. Waiting. Learning to crochet (we are trying). Waiting. Getting the bad result. Grilling the doctor on what/when/whether I should be worrying or not. Back to the pharmacy...more meds. Get with the home care people and get a new bag of fluid and a new pump. Give Jerad the bad news...Walk out to the car. See the same lady in the parking booth who now lets me go without paying. Not sure if it is out of pity or because she sees me. Every. Single. Day.

And as such, we are scheduled to do it all again at 1:30 tomorrow.

Poor Ally. The fluid makes her feel bad. She hasn't eaten much of anything in a week. Because this chemo is not leaving her body properly, the side effects will be worse. They are currently worried about painful mouth sores. She also has belly pain. It all is hard on her internal organs, particularly the kidneys. I pray that she doesn't have damage. As of today, her kidney blood test looked okay.

So Dr. B upped the rescue drug...which protects her, but does not make it go any quicker. He did speed up her fluids from 145ml/hr to 150ml/hr. Maybe that will make her pee it out quicker. That is the only way to get it out. At least he didn't admit us...I was kind of mentally preparing for that.

The doctor also informed me that he could not get the MRD results for her. He has exhausted it, and he just can't get it. That is the minimal residual disease number that they tested with her bone marrow specimen about 5 or 6 weeks ago. The number I was just dying to know. He said we could try to find someone that will do it for us, but we would have to put Ally through the procedure again. Another letdown. I am trying to take it in stride. Maybe I am just not meant to get that number. It is certainly not for the sake of trying. I have worked every angle and every doctor to get it.

Finally, we talked about the next round of treatment. Ally has one more in-patient methotrexate stay and then we move on to the next round. And it is going to be very hard he tells me. Just like the first month. They repeat all the same meds again. So we have that to look forward to. It will start mid-November and go through the holidays.

All of the suffering, I know, getting old to read about everyday and even worse to live. Jerad tells me I can't tell you all of the clinical stuff anymore...too depressing. I am going to lose my loyal readership.

Soooo the silver lining to this picture is that I have wonderful friends who came to my rescue today. Lisa came and sat with Ally while I took care of Carly (and kept them apart). Lisa, Nicki, and Suzanne collected all of my laundry and did it for me. (It was a lot) Changed the beds. Ran the vacuum. I have several neighbors making me food. Pastor Gil and Keli spent over an hour with me trying to give me encouragement and making me promise to take care of myself and praying with me. And offering me the opportunity to do so.

I am not good about asking for help. Most of the time, I won't. I never want to be a burden to anyone. But today I gave in and I feel so much better tonight that a few things got done around here. So thank you so much for just stepping in and helping, no questions asked. I realize I can't do this all myself.

I am also thinking (and grateful) to one other friend of mine. George Arnold. He ran the Detroit half marathon this weekend in Ally's honor. George is a big tall guy...not really the running sort. Nothing against him, but just what it is. As he practiced for it, he said he would always think about Ally. If she can go through what she does, then I can do this. He said his back started hurting at mile marker 1. Again, thoughts of Ally pushed him through. And he did it! We are proud to have friends like that!

Maybe tomorrow will be our day. But if it isn't, I will just take it as it is. And maybe learn a little more about crocheting in the process.

Wednesday, October 21, 2009

It continues....

Where do I begin? Our nightmare is never-ending, I swear. I really feel like a black cloud is just over me...bad luck. Some of my friends would agree. Last night, Carly got really sick. I mean REALLY sick to the point where we were seconds away from throwing her in the car and heading to the hospital, our favorite place. She was coughing, but not too crazy, but she just could not get her breath. She would just gasp and gasp for air, almost like someone was choking her. Popsicles and cool water...and Jerad and I having her between us in bed all night. And Motrin. I just kept telling Jerad...we just have to make it til morning. All the while, Ally is still hooked up to fluids and needing us too. We did not sleep much.

Jerad was waiting at the doctor's office when they opened with Carly in his arms, still dressed in her pajamas. He told them our situation at the front desk...about Ally....about the urgent need to figure out if Carly had the flu, etc. He said they almost turned him away, but someone went and asked the other doctor there...and they let them back. They did test her for both flus (A and H1N1) but the doctor felt she had croup. It was easy to hear the stridor and see her difficulty in breathing, so they had to go to Children's for a chest x-ray and also a throat x-ray. Croup shows up in the throat as it constricts the airway and the vocal cords. It turns out the doctor was right...it was confirmed by the x-ray. They called Carly back into their office this afternoon and gave her a shot of Decadron (this is a steriod that Ally also takes) in the leg and she was also given a breathing treatment. Afterwards, she sounded better almost instantly and they got her oxygen level up to an acceptable level of 95%. We had a very scary incident with Evan having croup once and spent Christmas Day in the hospital. Earlier this evening the doctor's office called to check on her and also informed us that both of her flu screens were negative. That's good news.

As Carly was getting all this done, Ally went back to the clinic to be reevaluated on her methotrexate level. I was certain that her levels would be low enough. We were almost two days later than the last cycle. She has to be beneath .1% but the test came back at .64%. This was quite worrisome to me and they don't know why it is taking her kidneys so much longer this time to rid her body of the methotrexate. The doctors know I am upset...I know that having the chemo in her body too long can cause organ damage. But there is nothing they can do to speed it up. They did discuss doing a kidney test before she goes in to have this chemo for a fourth time on November 1st. They need to make sure that her kidneys can handle it. When Ally was first diagnosed, they told us that this would be a particularly hard time for her. It wasn't so bad the first two times, except for the inconvenience and isolation of the hospital. But now I know what they were referring to because she does not feel well at all. Not eating, not moving, not happy, not talking, belly ache, tired....I just feel so bad for her. I want to take it all away. So again, AGAIN, we are toting around the large bag of fluids. I carry it everywhere for her....it is sort of like having a baby again. And she is due back to the hospital for the 7th day in a row tomorrow.

The doctors wanted Ally and Carly to be in separate households. They don't want Ally exposed to these germs. While this is possible, we decided to isolate Ally here in our own house. It is just too hard on everybody to split up and we are fearful that one of us could still be making a night-time trip to the hospital and we do have a third child to take care of too. (sorry Evan) We barricaded Ally in her room upstairs with Evan...Jerad even put a TV in there. Carly stayed on the main level. We are going to try to keep it this way, but we do need help. I can't leave either one of them alone right now. I do have some help coming tomorrow. I hope I can manage it all.

So my worry went from Ally to Carly, back to Ally. I physically cannot worry anymore. I feel like I am just falling and never able to catch myself. Everything is building up around me, I hate the mess, I am lysoling everything....I haven't had even five minutes to catch my breath without someone yelling "Mom". It's rough. Everyone needs some downtime and we are just not getting it. At all. We have even been eating all of our meals while standing up and/or taking care of someone.

Every week I keep telling myself...this too shall pass...and it does...but then something else comes up. Nothing ever passes completely, we just move on to the next crisis. We just got over the stomach flu with her, back to the hospital, now this. Here I am worrying about her kidneys...and Carly breathing. I hope we get to sleep some tonight so that we can make it over this next hurdle.

Finally, did I ever mention this, I don't think I did: WE RAISED $40,000! We passed over the 4G mark last week. And that is just awesome.

Tuesday, October 20, 2009

Poor Ally, Poor Carly

The days are getting longer and harder for us. After going to the clinic this morning, with the expectation that Ally would be taken off the fluids and de-accessed, we were told this could not be the case. The methotrexate level in her blood sample was still too high (1.4, needs to be below .1) and she needed more of the rescue drug (leucovorin) and another 24 hours of fluids. So this particular round, although identical to the two treatments before it, is not following the same path. I am not sure if that is because it builds up over time or the body gets used to it, or what. But this time it is longer and also harsher on her. It is crucial to get the methotrexate out of her body as it can damage her internal organs. Ally felt terrible all day today. Barely lifting her head up, not speaking at all, she did absolutely nothing all day. I canceled her home schooling and also canceled a board meeting I was supposed to go to tonight. Which is a good thing because this evening our other daughter came down with a 102 temperature. She now must have the virus that has been going around, and hoping it is not the flu. I desperately tried to keep the two girls apart, but they were both needing me at the same time and Jerad was at a work function until 9:30pm. Let me just say it is impossible to tell a two year old to go sit in the other room when she is sick. So if I had to do anything for Ally (which is a lot when she is carrying around 20lbs worth of fluids everywhere) then Carly was also right there. I will not be surprised if Ally ends up back in the hospital. She is not tolerating the chemo well and then there is also the strong possibility that she is getting sick.

She is taking so many medications now. I took a picture of how many I gave her right before bed. And she gets the meds two or three times a day now...I even set my alarm to give her one at 3am last night.

So that little dish contains her leucovorin (rescue drug for methotrexate), antibiotic for her toe infection (another crappy story), megase (appetite stimulant to make her eat), 6-MP (an oral chemo), and prevacid tablet (for her stomach). About an hour later she threw up and I am guessing that most of these medications did not get digested. But I don't know and I can't begin to try to re-dose...which reminds me that I should have also probably given her an anti-nausea pill. AAAAAAAAAAAAAAAAGGGGGGGGGGGGGGHHHHHHHHHHHH.

So I had help lined up for tomorrow, because I have to take Ally back to the hospital yet again. Sixth day in a row. But now I can't pawn my other sick child off on a friend or family member because I don't want to get their kids sick and I also don't think that would be very nice to do to Carly. So, again, that means that Jerad will have to miss another couple hours of work, if we are lucky. And it just goes to show why so many of these parents don't work at all probably because they have lost their jobs as they try to save their children. We continue to thank the people at Synergy who step up to the plate and help Jerad through this difficult time. And poor Jerad continues to see many late nights in front of his laptop.

Thank you to all the people who are trying to step in and get us groceries and food and offer to help with the kids, etc. It is a tough time for sure and we are grateful to those who step forward to help.

Sorry for yet another depressing post, but it is what it is. We are trying not to panic through this one. I am hoping that both of my girls perk up and feel better tomorrow. My throat is hurting as I type this so maybe a little hope for me too.

Monday, October 19, 2009

Happy 13 Years.

Sorry for my delay and cause for any worry....Ally did perk up yesterday evening a bit. She was doing well enough today that they said she could go home about 5pm. Of course, we are due back to the hospital at 9am in the morning. It is kind of just a night pass, but it works out because we get to be together and also sleep in our own bed. I sometimes feel bad leaving the hospital, as so many of our friends there stay for very long periods of time. We come and go, and they will still be there. Ally's friend Ashley and Dave were both in that boat this time.

Ally is not feeling so great. Her belly hurts and she seems tired and slow. She wanted to go to Rita's Ice Cream as soon as we left the hospital. I drove her all the way there just to find out it was closed for the season. UGH. So then I asked her if she wanted to go see the kids at her brother's last soccer game. Like the champ that she is she said yes. We went straight from the hospital to the soccer fields and we carried around her backpack full of fluid and made sure we didn't trip up on all her tubes. She is an inspiration to so many. She was even smiling. And I KNOW she felt like crap.

Hopefully, she will pass all of her tests tomorrow and be freed of the tubing. We got a letter from school today saying they are having an unusually high number of absences due to strep throat and/or flu-like viruses. I think that I will just keep her home until some of that clears up....assuming it does. But I can't keep the whole family locked up...so I guess we just have to pray that our family is spared. We have all had the flu vaccine and they tell me that is the best thing we can do right now to protect our girl.

So tonight I am glad to be home again with the family. I am especially grateful today because we are celebrating (well not really celebrating per se) but remembering that Jerad and I were married 13 years ago today. Many of you were there that day to celebrate the beginnings of the Barnett family that we are today. Who knew that when they said for better or worse, in good times and in bad, in sickness and the health, that it would all ring true for us. And so early in our married life too. We have had our share of hardships. But I am constantly reminded of what a gift that I was given in Jerad. Because you will never find a more caring and devoted father than him. And once again, maybe that is one of the reasons this is happening to us and not someone else. Many dads would completely crack under the pressure of this and go into a hole and never come out. But he remains strong for all us, continuing to do his work and his community service throughout all of this.. and go on with life and just make the best of it. And maybe even crack a smile or a joke in typical Jerad fashion. And maybe next year we will actually get to celebrate!

Sunday, October 18, 2009

Kickin it up a Notch

My worry level is up a few notches. Ally is not doing so well. She has been asleep since about 8pm last night (and it is now 2:30pm the next day). I am not sure why she is sleeping so much. She has never done this. I am not sure if she is coming down with something or if the chemo is just hitting her harder or what. She does not have a fever, which is good, but wondering if something is brewing. About the only time she is awake is when she goes to the bathroom, and she is usually crying and saying her belly hurts. They gave her some benadryl for her belly (I guess that works?)...if I would have known I would not have let them do it. The nurse told me after she did it. Benadryl just knocks people out, me especially. I remember getting some when I was younger and my mom saying she thought I had some sort of allergy to it because it knocked me out so much. But she was asleep before they even gave it to her, so I just don't know.

Send some prayers that she bounces back. If she does, they may let her go home tomorrow. As of right now, I don't think she will be going anywhere. After the chemo is done (about another hour to go) they are going to tranfuse her with some blood. Maybe that will perk her up.

My worry level is high.

Saturday, October 17, 2009

Dayton Children's Saturday

And so it goes....the Barnetts are back to spending our Saturday in the hospital. Ally just came out of her spinal....yes, the doctors keep on going. Chemo does not stop because it's the weekend. Dr Dole just did the spinal for us, right after he finished doing rounds on the other 14 (14!) kids that are up in the hemoc unit today. That doctor sure has a lot of work to do. Ally is doing her usual job of making me nervous....she seems a bit more sleepy afterwards today. The monitor that beeps when something is out of range keeps beeping. No one else seems to be bothered when it starts beeping...no they just silence it. But a mother's job is always to wonder why and worry about her offspring, and so that is what I am currently doing. I think I have earned a thousand badges of worry over the last 5 months. I wish I could just go back to worrying about simple illnesses that kids get....coughs, fever, I will even take some throwing up. Just take away the spinals and the chemo and the medicine cabinet I have in my kitchen now.

As we were walking down the hall earlier, wheeling our daughter to her procedure room in her hospital bed, for some reason I was thinking of my son Evan. At that moment, he was out on the soccer field playing his game, with his little sister and his grandparents watching. I hate missing his games, and I have missed a lot this season. With Jerad being the coach, he goes, and I stay with Ally. So anyway I was picturing him playing hard....having lots of energy like he does....and knowing that 60% of Beavercreek families were also at those soccer fields today. Again, wishing I was not entering a procedure room to get spinal fluid and intrethecal chemo deposited into her spine. After the procedure was done, we wheeled her back down the hall (having to go the long way to avoid the "really" sick kid area....great) and Jerad lifted her out of the gurney and into her normal hospital bed. Right then, Grandma called to tell us Evan had scored two goals. Wow...way to go buddy. I had a feeling......

Ally's 24 hour methotrexate chemo should start here soon (HOPING)...the sooner it gets started then the sooner it will finish and I just get really antsy waiting. We are hoping that they let her come home sometime Monday on fluids again. Guessing she will be hooked up to fluids at least through Tuesday. The doctor thinks she might need another blood transfusion too....her hemoglobin was close to low levels and she looks very pale. We are again passing our time here in the hospital in isolation. No visitors except maybe the grandparents. We did really try to enjoy the day off school yesterday....the kids got to go see the Where the Wild Things Are movie with their teachers. Ally did some schoolwork with Mrs Brower. We also had some friends over last night....needing to get to talk to some people before our quiet stay here. Ally played "Rock Band" with all of her friends...even through getting hooked up to her fluids right in the middle of it. She takes it all in stride and I am so grateful again that she is a laid back person.

I am sitting here with a big annoying knee brace on. I went and saw the orthopedic doctor and found out that basically my knee cap is grating against some bone in there. He could fix it with a "little surgery" but wanted to try this brace for a while to see if it helps. It is huge...like one that my friend Molly wore when she dislocated her knee. I will try it. If it is easier to do the surgery, I am thinking I should just do that. But I really don't have the time for that either.....that would never work for me now. I would like to get rid of the pain, however. It tends to grate on me over time.

Please pray that Ally tolerates this next round of chemo well. Please pray that she comes out of this spinal procedure feeling okay and that I get to see her smiling face again soon. Most importantly, that the leukemia is gone and never ever again appears in her body...

Wednesday, October 14, 2009

Another delay

Ally's bloodwork came back today and this time her ANC was high enough (2900 and had to be 750 or higher) but her darn platelet number was too low (59 and had to be 75). We have never seen a delay for that reason. So she is NOT going into the hospital in the morning, but rather they want to give her a couple of days for that number to rise. They are looking at admitting her on Saturday. As usual, this kind of ruins some timing for us. We were trying to bump her a day this cycle and then another day next cycle, so that she could be home for Trick or Treat on the 31st. But now, maybe she will just go in the day after Halloween or something like that. Of course, I had everything for tomorrow taken care of and the kids watched, etc, but now NO NEED. Once again, one of the hardest things about this whole illness is just the inability to plan anything. For two CPAs, and big planners, it tends to be one our bigger hurdles.

So now, Ally is going to school tomorrow and we are finally going to be able to celebrate her birthday there. She wants to take pumpkin doughnuts in for her treat. And I also get the privilege (??) of going on a hiking field trip with Evan tomorrow. It is supposed to be 40 degrees and raining. Yikes.

I have been thinking a lot about my consultation with the spiritual advisor (Rene) on Monday. Everyone keeps asking me, and thus I must write. She advised me on a lot of things, including the need to grieve effectively for my mother....well really just grieve at all. If you don't do these things, it can end up causing a lot of problems later. Depression. She looked at a lot of things about me and nailed my personality on the head. Good and bad. Not many people can do that. I am one of those people who always expect the worst....but in the case of Ally I just do not. I expect the best. Really. 100% of me believes that she will beat this disease. It will be long and hard road, but she will.

During our talk, I got two very powerful messages from my mother. She reminded me of a Valentine that I had made for my Mom when I was about Ally's age. She described the Valentine to me. My mom was the type that never saved anything (to a fault).....but this particular Valentine was in her nightstand next to her bed right before she died. And Rene told me how special this was to my mom....and how on earth could she have known that? I was pretty much in shock. And secondly, when I was younger and we lived at CCN, mom and I used to always look for bluebirds. The bright blue birds would just stand out against the deep greens of the golf course and the trees. Mom would see one and literally start screaming ...sometimes I would hear her from the other side of the house. Sometimes, I would be on the phone with her when I was away at Miami, and she would drop what she was talking about just to tell me a bluebird flew by. I remember this actually used to annoy me. Mom loved birds, everyone knows this, but these bluebirds were just fun little creatures for us to spot. Just Mom and I. I don't even think my Dad or Sister even knew about this.

So I am talking with Rene, we are almost done with our session and she said she was getting a message from Mom for me. She closed her eyes and thought for a moment. And then she said....your mom wants you to go buy a little bluebird and put it somewhere in your house. She wants you to look at it and remember. And I am telling you there is no way, NO WAY, that woman would have known about our little bluebird thing unless she was somehow reaching my mother. I don't know how, I don't know why, I just think she did.

I know some people won't believe me on this, and I really don't care. It doesn't matter. But for all of you who have lost important people in your lives, and you have sent me notes telling me that you do in fact get signs, etc, well I am 100% a believer now too. Yep. And for all of you who have lost someone and don't see the signs, maybe they are there and you just have to look a little harder for them. As Rene said to me, your mom is right with you all of the time, Janel. She is right behind you. Every step of the way. And that must be why I am able to get up in the morning and keep going day after day. She is pushing me along.

Tuesday, October 13, 2009

Dayton Daily News

The article about our girl (and our army) did hit page 3 of the Dayton Daily News today. You can't grasp it online, but it was a nice big article with a big color picture. We have had lots of people commenting to us today that they had read it. The writer did a nice job, although spelling the name of my mother incorrectly...it was Marcy..and incorrectly assuming that the WSU basketball team raised money for the walk (which they did not). Other than those items, I do appreciate the recognition that we got for the fundraising. I still have multitudes of people doing fundraisers for us. I can think of five going on right now. Wow. I am pretty much saving those funds for another campaign which I believe will start up in the Spring.

Here is the article:
http://www.daytondailynews.com/news/dayton-news/344686.html?cxntnid=dlh-101309

Please ignore the rude comment listed below the article too. Uncalled for and some people have no sensitivity whatsoever.

I believe we will be starting back up on fluids tomorrow as Ally will get accessed via a home health nurse. She will be admitted on Thursday morning. This is all assuming her ANC is over 750, which I will call on in the morning. I love how we have to wait until the last minute for everything.

As always, thanks for keeping all of us in your prayers. We need them!

Monday, October 12, 2009

Hard Day for Me

First of all, most of you come here to check on my girl. She is doing well. She enjoyed a day off school today...all the kids were off...and she spent the day at her Pa's house surrounded by her family and she loved that. The plan is for her to attend school this week on Tuesday and Wednesday and then back into the hospital for more treatment starting Thursday. She actually has a field trip tomorrow...but it is a hiking/outdoors type of trip. I don't think this is the greatest choice for her. Her footing is not so great these days (a side effect) and she has a very low tolerance for the cold. Luckily, her Dad is going with her. I would have went, but I am finally getting my knee looked at after months of suffering in pain (and not having time to take care of myself)

But secondly, today was an especially hard day for me. One, I went and spoke to the spiritual advisor that I have been mentioning on here. I will discuss that later. Two, I spent the remainder of the day with my mom's only sister....and we just talk about Mom all the time. She loved my mom like I loved my mom and I have a kinship with her that I cannot explain (and always have). And three, I tried to go through some of my mom's things today....I wanted to do it earlier, but then my daughter got sick and it all got pushed by the wayside. Not sure if many of you have ever had to do such a thing, but it is pretty miserable. I just want to take entire rooms of my house and save anything that my mother ever touched. And that is just not possible. I will get to it more in time....

Why I did all these things in one day, I will not know. I am not quite strong enough to handle all of that right now. And I will discuss some of my spiritual teachings out here at some point. I know so many want to know if I reached my mom. And I did. And as I suspected, she is with me most all of the time. I learned that she can do more good for me from where she is now, then if she were here. She can protect us. I was also assured that my daughter will be fine. I really already knew that in my heart. But always good to hear a reassurance in the way the stars and moons line up....

Basically, we are all going to learn a lot of life's lessons at some point in our lives. Mine just seem to be all coming at once. And I am young, and the lessons are earlier for me, and they are tough ones. The suffering is teaching me a lesson. There are joys that I can only learn by first feeling the sorrow. And even though someone dies, they are still living on. This much is true. And me, by being broken to pieces, well eventually broken people become people of great strength. Several people have said this to me....that I went through everything with my Mom in order to prepare myself to take care of my daughter. The strength was building. Maybe this is true. As I was reading my nightly prayer book last night, in preparation and prayer for today, this passage was the one for October 11. I think it is quite true.

Measure your life by loss and not by gain,
Not by the wine drunk but by the wine poured forth.
For love's strength is found in love's sacrifice,
And he who suffers the most has most to give.
-Henry Ward Beecher

Sunday, October 11, 2009

Happy Birthday Ally!!!

Happy 8th Birthday Ally! And thank goodness our prayers were answered. She started feeling better on Friday, so we were able to move forward with the birthday weekend as planned. It really turned out so wonderfully.....better than I could have even dreamed. I think I had a little angel sitting on my shoulder all weekend helping me to get through! There were no problems (not even the slightest) and everything just went beautifully. Sigh of relief. She started her birthday by opening her presents. She received:
1) The rush hour game
2) Two little (tiny) aquatic frogs in their own water aquarium (she begged for this)
3) An IPOD (she LOVES music now, and loves to have it at the hospital)
4) The new "Wizards of Waverly Place" soundtrack (which I have included a song in the slide show below)

The frogs were her favorite thing (of the whole weekend, she said) and she named them swimmie and bubbles. After her presents, she went to her brother's soccer game, even though she didn't really want to. Mid-afternoon we left to take her over to the Greene. Here she got a pedicure with her two best friends Madden and Madison. What else did you think the girl who does nails 24-7 would want to do for her birthday? (did I mention that she wants to be a "nail technician" for Halloween?) We then did a little shopping and had dinner at The Cheesecake Factory. She was just dying for them to sing to her (I don't know why!) She must have asked me 10 times to make sure they would do it. Her sweet Aunt Jess, who spent the day with us, made sure that happened for her. The look on her face when they did was priceless.

After the big day, she asked if Madison could spend the night for her birthday. They were so cute...they got their pjs on, climbed into her double bed, and watched Monsters vs Aliens on a little portable DVD player in the bed. Little sister Carly even snuck in between them for a little bit, but Evan was NOT ALLOWED. Poor guy.

She then spent a good part of her Sunday hanging out with her Aunt Gail (my mom's sister) who came in from New York. We only get the privilege of seeing them a couple times a year. They had great fun coloring and picking pumpkins and gourds from Pa's pumpkin patch. We had the whole Mills/Hess/Spencer/Cahill clan over for an Italian dinner complete with Ally's choice of cake....ice cream sandwich cake. I am getting tired just writing about all of it.

I know I promised some photos of Ally's first eight years. I will do it! But not today...

Also, I am meeting the woman to try to "talk" to my mom tomorrow. We moved it. Some of you have emailed me wondering, but no luck yet. I will give it a try. I am cautiously optimistic, but have nothing left to lose. I need to feel my mom close, and I have lately, but I want to try for more.

Last year on Ally's 7th birthday I wrote down some of my favorite traits about her/reasons to love her. I mentioned that she is always kind to everyone, sweet as can be, always mature, and that she is quite creative. She also has the same gift as her father has....she never makes anyone mad! For year number eight, I would like to add a few reasons that I love her.

She is wise beyond her years now, never questioning, just accepting.
She is stronger than most people I know.
She is still kind and giving, but even more so now...always reaching out to teach others something she may know.
She is loving.
Most of all, she is inspiring. To a whole army full of people.

Here is a video clip from her birthday. Maybe you can watch it and feel like you celebrated with us. I wish everyone could have been there.




video

Friday, October 9, 2009

On the mend

Ally is on the mend. She has gone from being very sick 24 hours ago to now just complaining of lingering belly pain. We holed up in the house all day and tried to take care of her. There are a lot of hours to fill in a day when you are stuck inside. So we made pumpkin bread (her favorite), played play-dough (with Carly), made some homemade halloween cards, watched a show (Ally, not me), did some schoolwork, visited with Pa, and called and re-invited my Aunt Gail to come and see us, just a day late. I also did furious cleaning and trying to remove all germs from the house....all bedding, stuffed animals, blankets on the couch, etc washed. I wonder how it is that I am always picking up after the five people in this family. All. Day. Long.

I know I was in despair when I wrote last night. Jerad says "you sure get a lot of comments when you write a sad post" Yea, I do. Because when I am sad, my army lifts me up a little. I get more comments and emails. Nice neighbors bring me gifts (thanks Paula and Judy) And when life is bad and/or sad, it is just that. I cannot change it and I certainly won't sugarcoat it for the purpose of keeping this blog. I am trying to keep this real....even though I don't like what's happening anymore than anyone else.

So I kissed my little girl goodnight just a short hour ago. I said to her it is your last day to be 7. Your last kiss as a 7 year old. I said tomorrow you get whatever you want. And she said...whatever I want for breakfast, whatever I want for lunch, and whatever I want for dinner. And I said yes. But isn't that what we do everyday anyway? Oh yea, she said. But I did say that she can ask me to do whatever for her. But I usually do that too. Pushover.
For some reason, every year on her birthday I get a little sad. I remember her first birthday...crying all day. So sad that the "baby year" was behind me. It is no different this year. I am sad that she is another year older. You don't get to have your kids with you everyday for your whole life...this I realize. After a while, they are gone and off to start their own lives....and then it is back to it being just Jerad and I again. So I sort of have this mental ticker going off inside my head. I always yell at the kids when they get older (jokingly, of course) This year I am sad for more reasons than that though. So much can change in a year. I looked at this picture of her last year on her birthday, and then I wondered where we will be next year on her birthday. And then I forced myself to stop thinking about it, and just live for today.
I am hoping to have more pictures of my girl Ally over the years up for her birthday. Or shortly thereafter. A lot of you don't even know her pre-disease. Here's to hoping she can celebrate her day with minimal ailments. Just like a new parent, Jerad and I were even wishing that maybe, just maybe, she will sleep through the night. She never ever does. But one can hope.......

Thursday, October 8, 2009

Awful Day

Today has just been downright awful. I don't even want to write about it, but I guess it is what it is. So I will. There is no requirement to read this, so feel free to logoff now. After my typical anxiety ridden morning (everyday!) wondering if Ally will cry....if she will go to school...if something will hurt, etc...she went to school. Made Jerad late for a 730 mtg in the process, but such is the way of our life. She made it at school until about 11 when the nurse called me...Ally had a headache. I talked to her, she was crying again, I said I would come get her. I was actually trying to work today, but starting to think work is just not gonna be an option for me. I put the work aside and hopped in the car.

Her teacher said she had been really goofy and having a great day and this headache came on all of the sudden. OK, fine, hopefully she will be back to school for her birthday party tomorrow...I told her. We walked out to the car in the pouring rain. It has rained buckets here today. I decided I better take her right to the testing center to get her blood checked. Typically, headache is a symptom of her needing blood. Upon arrival there I am pretty much pushed back outside by our friend Mona...there are some really sick people in there...wait in the car. I hadn't brought Ally anyway, I was leaving her in the safety of my car already. (see, I have learned) While all of the sick people were getting their noses swabbed, Ally and I sat in the car. She started crying. Yelling. She wanted to go home. And so did I. But I knew we had to get it checked. We sat in the car waiting for 30 minutes. She was crying pretty much the whole time. We usually get right in. Damn the flu. I finally went and found someone and they snuck us in the back door to avoid germs (and she wore a mask). Get it overwith already.

The finger prick itself was nothing compared to the grueling wait. We left. Within an hour of being home she was asleep. This is not like her. An hour after that she was throwing up. A lot. She hadn't eaten all day either. She continued getting sick. After a while she started throwing up a neon green color. I knew from my Mom doing this same thing, that this was bile. It's a little scary to see. I kept taking her temp...every 20 minutes or so and she was getting mad about it. It never got higher than 99.3. However, I was preparing to go to the hospital.

Later, I called the clinic and her bloodwork numbers were all good. Hemoglobin 9 and ANC was 4000. She did not need blood. Her highest ANC ever was in the 1000's. I did not realize that the 4000 was probably too high until after 5pm. And the clinic was closed. I know that those high ANCs are a result of a high white blood count. Which can also mean a relapse. So I am starting to panic about that a little. And I am not a panicker. But the panic is just welling up inside me. Jerad and I are thinking that maybe the WBCs are high because she is sick. That could be the case. I will call and talk to them again in the morning. So much to learn, so little time, my brain is fried anyway.

She continues to be lethargic and throwing up. No fever, so I am feeling like it is not the flu. Mother's intuition is telling me stomach virus. But who knows. It is going around our community. My mom's sister was due to come into town tomorrow to see Ally...she has not seen her since diagnosis (they live in NYC). I have been planning for her arrival for a week. I had to call her and put her in a holding pattern. I felt so bad about that. And I do not want my Ally girl to be sick for her birthday. She has shouldered so much of the burden she deserves to have 10 birthdays. And now I am thinking she won't be able to enjoy this one. We will make it special, maybe down the road, but we will.

And who do you want the most when you are sick and ailing the most? Your mom. And today, more than ever, I wished my Mom was here with me. If I could only see her again, just for one more day. Evan and I had a discussion today during one my crying moments:
E: are you crying because your mom is in heaven?
Me: Yes, I miss her
E: And you want her to take care of you?
Me: Oh, yes. I need her to.
E: Well who is going to take care of you then?
Me: I don't know
E: Your Dad?
Me: Maybe, or maybe your Dad. Jerad
E: Will you ever get another one? Another mom?
Me: Nope, just one Mom for everybody... that is why mom's are so special.
E: Oh

Right after this discussion the phone rang. It was my Dad. He told me he just talked to Mom. What?! One of his friends has some way to connect with people on the other side and she helped him tonight. He felt he connected with her. I believe it can be true. I really do. And now he is a believer too. So Dad set me up to talk to this woman on Sunday morning. I know you will all think I am a lunatic, and maybe I am, but I am going to do it. Even if it is just a little thing, it is something. It might give me a little much-needed strength and help me to get by.

Just say your prayers that we don't end up in the hospital for my girl's special day. And give me the strength to take care of her. I am not feeling that I have it right now.

Wednesday, October 7, 2009

Light the Night Tally

Just a quick update for everybody on our Light the Night Walk that took place last week. We had a lot of donations come in that night. And thanks to all of our wonderful supporters, I have a new funds raised amount to report. Lisa Beam from the Leukemia and Lymphoma society called me this afternoon to report that we have raised $39,500 for them!!! I am in complete awe of that. When this first started, Lisa sent me an email telling me that most "first-year" teams set their goal at $1000. I was feeling a little crazy, so when I set up our webpage I set the Ally's Army goal at $3500. After a couple of days, Jerad took a look at the page and thought $3500 was too low and unacceptable. He suggested I raise it to $10,000. I told him that I would, but that I thought that was a crazy high amount and I didn't want to fall short of our goal. (can you tell I hate losing?) So how do I feel today? The Army has come together again, in honor of my Ally, and raised $40k. We still have checks coming in to tell you the truth. Still have people calling to tell me about fundraisers they are doing. Amazing. Heartwarming. Actually unbelievable.

And Lisa also told me that the reporter from the Dayton Daily News called her to get some information for a news article that he is writing on Ally's Army and our efforts. He wanted to know where we fell nationally in $$$ raised. It is not yet determined, because some walks are still taking place. But I think we will be HIGH. Look for the article in your newspaper sometime over the next couple of days. I will surely post it here too.

Thanks to everyone for the comments on sickness, etc. I am trying to maintain a good balance of life for my daughter, but yet protection from germs. Both of which are important to her healing and beating this disease. Again, I never know...every day I wake up and wonder if my girl will go to school that day. Nothing is ever a given for us. Nothing is ever taken for granted.

Thank you to my kind neighbor Jill who brought us some yummy soup, bread, and dessert for dinner. It was great to have a break from cooking again.

We appreciate your prayers and support so much.

Illness Fears

Just wanted everyone to know that Ally is doing ok. She only made it for a half day of school yesterday. She was having belly pain and not feeling 100% (well, is she ever 100%?) so she went into school around lunchtime. She did make it to a reconciliation service at church last night that is a requirement for her making her first communion next Spring. She typically goes to a PSR class at St Lukes on Wednesday, but has yet to make it this year due to dr's appointments. I find it so hard to have her go...I can only expect so much of her. After she goes to a full day of school, which I think is a huge accomplishment, she is usually very tired. So any/all extracurricular activities are non-existent for her. Someday.

I panicked when I heard two of our elementary schools in Beavercreek had over 100 kids out on Monday....over half the cases were confirmed flu. Yet Valley (her school) only had 15 kids out. The flu is coming. And when it hits her school I will be hard pressed to let her attend. Thankfully, we have home schooling set up and I think she will do okay with that.

Speaking of illness, I am fighting something off myself. I went to bed at 8pm last night and woke up at 7am this morning. I refused to touch Ally and I made Jerad pack her lunch today. I guess it is better that she is not here, although the school nurse actually just called me with Ally having a sore throat today. I think she is battling a bit of a cold. However there were four cases of strep throat in her classroom...all at the same table even. Luckily she was in the hospital and not there for that.

How am I supposed to live each day not consumed with worry about all these illnesses? And it is only October, and I know it will get much worse. I just keep saying my prayers that God will put a hedge of protection around her and all of us. Please keep her well as she has way more than enough to deal with already. As does the rest of the Barnett family.

Monday, October 5, 2009

Ally is Free

Ally is free of all backpacks, tubing, and hospital tests as of 2pm today. This being said, she went to the clinic at 9am with the intention of just getting a simple blood test and then getting de-accessed. It should have taken 2 hours tops, but ended up taking more than double that amount of time. Totally frustrating, mostly for Jerad who took her and was planning on it being a quick thing and then heading into work. I kept volunteering to go down there with Carly, but he kept thinking it would just be "one more minute" but then it turned into two and a half more hours. It really makes you want to scream. Thankfully, those Synergy friends stepped up to the plate for Jerad (AGAIN).

She seemed to be doing good. She had her home instruction in the afternoon since she has been missing school. She was also happy to go to her brother's soccer game and then to get a treat at Wendy's afterwards. But the last couple of hours she has been complaining of belly pain and it sounds like she has a stuffed up nose. I sure hope that she didn't catch something during her time in the hospital!

Carly kept asking for her sister all morning and then kept questioning "ally at hospital?" And I just think it is really sad that one of my two year old's vocabulary words is hospital. And she says it a lot.

So we will see where this course of chemo takes us. One day at a time. I never know. But I am glad to have us all home again tonight.

Sunday, October 4, 2009

Conclusion of Fundraising Week

Ally did make it home today from the hospital. She was allowed to go home as long as we gave her the leucovorin doses and she is also attached to a gigantic (I mean huge) bag of fluid. The leucovorin is a rescue drug and I believe it helps her blood to recover after the high doses of methotrexate were given to her. The dr described the methotrexate like this......it goes after the rapidly dividing cells first (which is the leukemia cells, but also mouth cells and hair cells). So once it hits those cells, then they focus on getting the methotrexate out of her body as quickly as possible. Thus....all the fluids. Once it is down to .1%, then she can be de-accessed and be done. So she is home and I kinda feel like we are earning a free night here. Last time we had to stay three nights. We do have to head straight back to the clinic in the morning so they can check her levels there. Hopefully she will be done.

Again, it is so great to have us all together. It is even harder now with the visiting restrictions and we have just been so busy this whole past week that I haven't even seen Jerad at all! The week of chaos...first the walk, and last night we had a gigantic fundraiser gala at my Dad's house. Over 500 people attended the affair and $379,000 was raised for the Cassano Health Center primarily through a very lucrative auction. Much of this was done in honor of my mom, she lost her battle to cancer but wanted to make sure others were able to get the care they need, even if they couldn't afford it. It was a little sad....even more sad when we had a church service in the same tent this morning. Looking out over my mom's land, my mom's pond, my mom's ducks and listening to the great music of the Grace Crossing band made me a little melancholy today. My life is just a rollar coaster, I better hang on.
My group going to the prom, uh, I mean gala....
Adults should get to go to proms. Galas, whatever. Look at my girls! Momma
I do want to say I am so grateful to Jerad's parents who came into town on Thursday for the walk and helped us all weekend with the hospital stay and the kids, etc. They actually went and sat with Ally at the hospital yesterday evening so that we wouldn't miss the gala. Because of all the help they have provided, Carly is now very attached to them and is so cute calling them "gammaw and gampaw" Gotta love the two year old words.
Gammaw made us cupcakes shaped like pumpkins...
Better get to bed. Hourly bathroom breaks from Miss Allison (and we have to help her carry the giant backpack of fluids) and she is also due for meds at 2am. When do I get my nursing degree again?

Saturday, October 3, 2009

News Article on Ally

Click here to see a small article about Ally's Army and the WSU team.


http://www.daytondailynews.com/blogs/content/shared-gen/blogs/dayton/wrightstatesports/


And here is the picture I promised (thanks Paula, got the whole family too!):

Ally is doing fine, chemo should be done about 2pm. We were up about every 40 minutes all night with bathroom breaks. Mommy is tired. That is way more sleep interruptions than I ever got up with my newborns! We are very isolated and very bored but she is the healthiest kid up here right now and for that we are grateful.

Friday, October 2, 2009

Long Days Again

My mind is still racing as I reflect on everything that happened yesterday. I keep hearing all of the wonderful praises from everyone on how amazing they thought it was. I kinda wish I was able to capture it more in my emotional memory bank. I was just super busy the whole time doing all kinds of stuff that the team captain has to do. I guess when you are organizing that many people and passing stuff out/collecting stuff it is inevitable. I wish I would have had a little more time to talk to everyone. Like my college roommate Lisa who came all the way from Wisconsin to walk. Or my 2nd cousin Jane who came all the way from West Virginia....just to see Ally and do the walk. My former supervisor (and friend!) Ruthann who I haven't seen in 8 years....I knew I would cry when I saw her and I did. Jerad's lifelong friend Shawn who surprised us and flew up from Florida. An old elementary friend Jenny Israel who I haven't seen in 20 years! People just came out of the woodwork for our girl. There were also so many people on the list that I didn't even recognize...people who came to support us who I don't even know. Wow.

I did want to thank a few people. My friend, Lin Sartin, who works for Kohler's, arranged for about 25 people to walk on our behalf. Again, most of them don't know us. And the Wright State Basketball Team. Almost all of them were there. I need to track down a picture to post here. They were there to support us and our good friend (their coach!) Brad Brownell arranged it. In addition, today a sports writer from the Dayton Daily News (Marc Katz) interviewed us for a potential story on Ally. Mary Nutter and Robin Kraft and all their "sisters" organization were there rooting for our girl. And Ally's Valley Elementary Family...they had so many there. Her K, 1st, and 2nd grade teachers. Her principal. Her art teacher. Her PE teacher. Her school nurse and guidance counselor. Even teachers that she has never had including Heather Shively who came out on the drizzly night and celebrated her birthday by walking. Thank you all.

So today has been that day of reflection, but being in the hospital today has been especially a downer for me. I don't know if I am just in a bad mood or what, but this place is driving me nuts. I am here for all of today, tonight, full into tomorrow afternoon and after Evan's soccer game. Just walking to the cafeteria to get my dinner and there are tons of sick kids sitting in the hall by the urgent care with masks on (presumably flu). So I took a different path back to avoid it and find a huge carpet dryer out where someone has gotten sick all over the floor. (why carpet in a hospital, why?) Made me not want to eat that dinner I just got.
Ally is doing okay, but we arrived at 9 and they were so busy that they didn't start her treatment until 2. Which sets everything back. They also pumped her full of a bag of fluid at a rate of 999/hr...usually it is about 135. She swelled right up like a balloon...her face and eyes all puffy and full of fluid. One good thing was she now weighs 70 pounds....way up from the 61 measurement that had gotten just two weeks ago. I guess the appetite stimulant is working!
The hardest thing for us now is that the hospital has mandated NO VISITORS because of the outbreak of the flu. No one can come except parents and grandparents. Certainly no kids...not even her own brother or sister. I did get teared up today when she hugged her brother and sister goodbye and was not to see them again for four days. This makes life especially hard on Jerad and I...we usually "transfer" the kids in the hospital room. One of us comes, brings the kids, and then after a quick visit, the other one leaves with the kids to go home. Not sure how this is all going to work out. I guess it is good because I certainly don't want her catching the flu, but being in isolation for four days is just not fun. At all. So there are a couple other kids up here, but only one that she played with today. Aubrey is her favorite little friend up here...I think because she is 18 months old and reminds Ally of her little sister. They played for a little bit in the hemoc toy room. Cute. Both with their blue eyes and little bald heads, Aubrey is just a smaller version of Ally.


And then the only other highlight of the day was when the Sesame Street Live characters came to visit. They are in town for a show this weekend. Carly would have just peed her pants with excitement if she had the chance to see Elmo. She actually screamed and laughed when she saw this picture.
Here's hoping that we get to sleep in more than 1 hour increments....all the fluids make for frequent bathroom trips. And there is a chance that they may allow her to come home late Sunday on fluids, let her sleep in her own bed, and then come back on Monday to the clinic to get de-accessed. I sure hope that works out.

Ally is laying in bed beside me watching a movie. It is dark and her white Light the Night balloon is lit up and tied to her bed. She brought it in here today. How sweet is that?

If you are even still reading......sorry for the extra long post. I just have nothing else to do, so I am babbling on and on! Several of you last night told me I should write a book, and you know what, I just did!

Good night!

Light the Night

video
Press play and see an amazing video compilation of pictures created by our on-the-ball friend Nicki Winger who stayed up late to create this for you. So all of you from out of town can feel like you were there. The song is a favorite of Ally's....it is sung by the girl who plays iCarly. It is called It's Raining Sunshine...and it sort of was tonight. The support was incredible.

Thank you, thank you, thank you. Tonight was our Light the Night Walk. We had over 400 people there to support us. It was truly the most magnificent sight, to look out over the masses of people and see ORANGE. I can't even adequately describe how much orange was there. Ally's Army shirts were everywhere. There were so many Army members there that I didn't even get to see everybody. It was very touching to look out in front of me at all the walkers, as far as I could see, people carrying their red balloons that lit up at night. And to think that each person there was carrying a balloon to support someone who is fighting a blood cancer. It is amazing. And then I turn around and I see my girl. My child. My Ally. And she is carrying a lit up white balloon. Because she is a SURVIVOR. I still tremble at the thought that my baby girl is a cancer survivor.

Ally did great all night. Everyone kept saying "you are famous, a celebrity" She was even signing people's shirts with her name. Great trend! She rode in the wagon most of the way, until her wagon actually broke down. And then she walked! And she was tired by the end, but she did great. All of this after going to school all day.

We had a great tent filled with friends and family working for me. Thank you Jenny Robbins, Jessica, Kati, Tara, Laura Sears, Nicki, Suzanne, The Brower family and anyone else that was helping out that I didn't know about. There was so much to do. And people just kept throwing donations at our tent. Which brings me to the other aspect of this....I am thinking that with tonight's collections we could actually get close to $40,000. It is unbelievable. The largest team ever, the largest donation ever....and we even beat the largest teams in Cincinnati (where they have 6000 walkers) and Mason and quite possibly all of Ohio too. Their largest fundraiser was a corporate one and they were at $26,000. We will see where we fall in the national rankings. But as Jerad would say, we knocked it out of the park.

I will share more stories and pictures over the next couple of days. Thanks to everyone who took pictures and those people that are emailing them to me. I will post more, I promise. For now, I am just a little too tired and emotionally worn out. And we have to be at the hospital bright and early in the morning for another round of chemo.

As the top fundraiser, I was able to do a little speech to the crowd. Again, for those of you who were not there or could not hear me....this is what I said. A few cracks in the voice, a little bit of crying, but I did manage to say what I wanted to say. Here it is:

When our daughter Ally was diagnosed with Leukemia back in May, we were understandably devastated. Within days of her diagnosis, someone at Children’s hospital mentioned this Light the Night Walk to me. The wheels in my mind began to turn and I thought it would be the perfect way to honor my daughter. Little did I know that on this beautiful October night I would be the leader of 400 people called Ally’s Army. We are the largest single team to ever walk in Dayton. It is overwhelming. It is tremendous. And our seven year old girl is happy to have you all here. She may not understand today exactly how many people are here. But part of the reason we did this is so that someday, when she BEATS this terrible disease, she will know that she had hundreds of people walking through the trenches with her. Not just today, but everyday. In her school, in her neighborhood, at her doctor’s office, her family, her friends, and the people who don’t even know her that are praying for her recovery.


And it is one my proudest moments of my life to say that our team raised $35,000 (maybe more) for the Leukemia and Lymphoma Society. And we did not have one big corporate sponsor …it was truly a grassroots campaign. I did not raise this money…but each and every person here did it. I can never EVER express my gratitude. So Thank you. Thank you . Thank you.


I wanted to say one more thing: tonight as we walk together, there is one very important person that is not walking. My mom. Ally’s Ma. I know she walks with us through this journey everyday in our hearts. I know she is watching over us. And tonight, she is going to have quite a view from above of all of these red balloons here walking for her granddaughter. We will beat this disease. TOGETHER.