And so it is March......

Our girl is continuing to do well. She seems strong and spirited. She is laughing and also complaining. All good signs that make me happy. The highlight of her weekend was having two (TWO!) of her friends over last night for a sleepover. Again, we are taking advantage of the good times while we can. Our only current complaint is her lack of eating...she just turned down a chance for chocolate. We will see what she is at "weigh-in" tomorrow morning. She went and did her bloodwork today and we shall see in the morning if her counts are high enough for chemo. I am really hoping they are as I do not like delays. This will be dose 3 of 5 in this phase. She will get Vincristin and Methotrexate on Monday. On Tuesday, she will be faced with the leg shots. This particular combination was really hard on her last time, so I am not anticipating a good week.

We have also crossed another major hurdle that I had long ago created in my mind. Ever since the beginning, I had been dreading the months of January/February. These months are not good for even a typical family, but I was anticipating that they could be horrible for us. These two months are arguably the sickest months of the entire year...and I know of a lot of sickness going on right now. The hospital is bursting at the seams with RSV, bronchitis, pneumonia....everyone I run into (including Jerad!) has a cold or a cough or a sore throat. And here I sit on the evening of February 28th...Ally has not been in-patient since January 8. I am knocking on wood everywhere around me, but I am just so grateful that she has been spared of these illnesses so far. We had a horrible HORRIBLE time in the fall, thru the holidays, etc...we definitely paid our dues, but I just can't even express the feelings I have right now as we sit here comfortably in our own home knowing of all those who are suffering.

Actually, I have been quite the emotional wreck lately as we see all of this sickness going on all around us. It is almost as if we are in a snow globe, looking out, and everyone we know from our cancer family is around us having issues. One of our dearest dearest friends, Maggie, is currently in ICU and fighting off pneumonia and quite literally fighting for her life. As is baby Lincoln...who is also in ICU. Several others are having bad times, and relapses and such. I have YET to hear a good story come around. This child is having heart problems, another having problems with her port site, another with dialysis issues. It goes on and on and on. And Jerad and I are shaken. To the core. Just dropping everything all the time to pray. And pray. And pray for these people. We have to live by Faith, and not by fear. I have a strong faith, I do. But when there is tragedy all around us, all the time....it wrecks havoc on our brains. I need some strength. I need some good news.

I have prayed so many prayers for Maggie today. And Lincoln. If you would do the same. I believe there is power in it. And I am also thinking of my dear friend Lisa, who said goodbye to her father on Friday. And I was able to witness the strong love of a family coming through, even in death. And a little extra prayer for Jerad's Uncle Bill, who is having some heart issues. We love Uncle Bill so much and he is a religious follower of Ally's battle with leukemia.

You can check on Maggie here. Let them know you are thinking of them. It know it helps them through to know that people are out there and praying.
www.maggiebixler.blogspot.com

I am sorry to have made this post a giant prayer request. I am just lost and don't even know what to do anymore. I want the spring to come and the flowers to pop out and everyone to miraculously get better! Unfortunately, I know it won't happen like that (well, hopefully the spring part comes true very soon). When you win the reverse lottery like we did, and become cancer parents, it changes so much of our lives. We just can't look at things in the same way. We can't live our lives without a tinge of worry always creeping in. This is not going to go away in a year or two....we will always have it. We just have to learn how to live with it and deal with the dark days and have hope that good days will come again.

I was thinking that tomorrow, when I walk into that clinic for yet another chemo day, I will ask one of my favorite nurses to give me a good story. One that I can hold onto for while.

Pray for all of them.

Interim Maintenance, my favorite

I have a good report which always makes me happy. Ally continues to do remarkably well through this phase of chemo. I am thinking that this is my "favorite" phase that we have had so far. Sad to say, but true. In my "before" world, this is how I would have expected chemo to be. Get the chemo, be sick for two or three days, and then move on. That seems to be how this phase is going. The others, not so much.
She has gone to school three days this week and will most likely go tomorrow too. That has to be some sort of record! I knew things were good on Tuesday afternoon. My cousin's wife, Julie, has offered to teach the kids private swim lessons. She came to pick Evan up and Ally wanted to go too. She put her suit on and did the "older kids" lesson and according to Julie she did great. Never tiring. Exercise is so good for her and especially swimming on her joints. It made me very happy.
We have a few more days and then she goes back in on Monday morning for more chemo (Vincristine and an even higher dose of methotrexate)...then Tuesday she has to go back for the PEG leg shots. You may remember that this back-to-back combination sent her straight to a wheelchair last time. So who knows. Oh, and we will be also be there on Thursday when Evan sees the cardiologist. Maybe I can get some sort of parking spot or name badge or something since I am there so much. Although there is really no better place to be because they are saving my daughter's life!
Please say an extra prayer for our baby Lincoln tonight. He is currently in the intensive care unit and I can't get him off my mind. I have been woken up the last two nights in the middle of the night with a strong urge to pray for him. We just spent all afternoon on Friday with him in the clinic, but things change quickly and I am praying for his miracle.

Not again.

Well I asked you all to pray for Bill, thinking he had weeks left to live. I had no idea whatsoever that his time was so short. He passed away last night....just hours after I mentioned it on the blog. He was an amazing man and I am so glad to have known him. He was one of those people that was just so full of life that it is hard to imagine him gone. He could fix anything, give you directions to anywhere, tell you anything you wanted to know about fast cars and/or boats....and he loved his family and grandchildren so much and always had a proud look on his face when you talked to him about it. He was too young. I last saw him when I was last in Cleveland...at the Cleveland Clinic with my Mom. My mom was in a crazy 13 hour long surgery to remove her bladder and he just drove down to the hospital and sat with me in the lobby with Lisa...and they helped me pass the time and told me it would all be ok. Well today and everyday I am just sick of cancer. Sick of what it does to so many people that I know. Sick of what it did to my mom. And Bill. Even my Dad had cancer (but survived). My Uncle. My Aunt. And now my daughter. And 100's of other people that I could personally list off right now. Why can't they find a cure? When? Why aren't people up in arms over this? Oh I know. Because they are tired. Of fighting cancer.

On Friday, I am heading to Cleveland to see my friend Lisa. I wish I could take it away from her, but I can't. As is the case with everything, I rely on my one motto that gets me through most days: at least we have each other. Friends and family are what gets us through.

Rest in Peace Captain Bill. I know you are pain free now and enjoying every minute of heaven. There is no speed limit there. We love you.

Blah Monday

Ally continued through the night and most of the day today with belly pain. I really don't know why this happens...I guess just all of the medications. She didn't go to school, but by mid-afternoon it was almost as if a light switch went off and all the sudden she felt better. I knew things were good when I suggested having a tea party with Carly and she went upstairs and dressed about ten of her stuffed animals for the "party". I love that. So much of Ally is adult-like....she has to deal with so many "big things" that I find myself even treating her like an adult half the time. I shouldn't forget that she is eight. So today we happily made all kinds of tea concoctions out of grape juice, apple juice, and cranberry juice. Maybe I got a few calories into her because she is still NOT EATING. I keep threatening her with the appetite stimulant medication, but nothing makes her eat.
We have been furiously working on a project for school for about two weeks now. She is presenting an oral report/poster on Egypt on Wednesday and I think she has had fun with it. She is anxious to go to school tomorrow to hopefully see some other kids present their countries. It is always good when she has something to look forward to. And by this evening, I actually heard her singing in the shower. I know it is a little thing, but I seriously NEVER get tired of the little things anymore. I am so grateful for moments like that.

Tonight I am sad for my college roommate and wonderful friend Lisa. Her mother died of cancer about nine years ago. And now her father is battling a brain tumor and has very little time left. I cannot fathom losing both my parents, not at our age...or really ever. Like me, she also blogs about her experience. And she is a beautiful, beautiful writer. (Her degree was in journalism). Say a prayer for her Dad Bill...and for her. Her blog address is here if you are interested in following along. They could use all the support that they can get.

http://twelvefooters.blogspot.com/

WSU Weekend (lots of pictures!)

Saturday went really well for us. I was a little worried when Ally was up in the middle of the night with leg pain and belly pain. But she was a real trooper and had such a busy day! She started out the day by making a snow fort in the front yard, going to her brother's basketball game, then had her whole event at Wright State (lots of pictures below), followed up by hanging out with her ENTIRE family from Jerad's side at the hotel Saturday night. Whew. I don't know too many kids who have a schedule like that following a day full of chemo and getting blood!
The Wright State event was very very nice. They planned it out so well...pink balloons and streamers decorating the arena, they made all five of us pink Ally's Army jerseys with our names on the back, the team even wore pink socks and special warm-ups. A section of the arena turned orange for the game...as we had 50 Ally's Army supporters there in their orange t-shirts. Thank you so so much to all of you who took time out of your Saturday afternoon to show support for our girl. Things like this are very encouraging to her and honestly she deserves any encouragement that she can get. She walks a tough line on a lot of days....and sees more pain than anyone should ever have to...so it is always nice when that is recognized and she gets a little boost to keep her pushing forward.

At halftime, Coach Williams presented her with a special signed and decorated ball and dedicated the game to Ally. She also mentioned that the Butler coach is battling breast cancer and asked her to say something to Ally. Which she did by whispering to her "you look much better bald than I ever did" as she walked off the court to talk to her team. You can see in the picture that the ball looks awesome and I know Ally was really happy to show it off to her friends. I really want to thank Bridgette Williams for doing this for Ally...it was all her idea and her work in planning and organizing. We are blessed to have so many people supporting us as we go through this trying time. Even nine months into it....there are still those people who have not forgotten we are in the midst of fighting the fight against leukemia.




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Ally is right in the middle of this!

Amazingly enough, Jerad's whole family was in town (even his sister and family who live in Florida)...this is really a quite rare occurrence so at Mom/Grandma's request we took next year's Christmas card picture. We were even color coordinated. Thank you to all 24 of them for making it! They stayed at a local hotel and Ally even got in the water to swim, which was nice to see.Sunday was not as good of a day for sweet Ally. I felt bad as she suffered most of the day with belly pain and spent the day on the couch. We were probably partly paying the price for over-doing it on Saturday. And some of it is just those nasty chemotherapy drugs. I know they are saving her, but I hate when they hurt her in the process. I am hoping she starts feeling better again soon. She has lost quite a bit of weight again, and failed to eat much of anything again today.

Thanks for praying for all those fighting cancer and all the families that are right there supporting their loved ones through it. Please pray for strength for all of them.

Note for WSU game

Note: To any of the Army that are attending the WSU Women's Game Saturday at 3pm...they will have tickets reserved for you at the ticket office. Just tell them you are with Ally's Army and I believe you just get in. They also said that anyone is welcome to speak at halftime and offer Ally any encouraging words. I am not sure what that would be exactly, but the offer is out there. Also: Wear your Ally's Army t-shirts!

We had a decent day at the hospital. Ally's bloodwork came back okay such that she was able to get both doses of chemo today. She has to have an ANC above 750 and her liver enzymes have to be in check too...or else they hold it. I was happy that the liver was fine and her ANC was 2400! Wow! This must explain why she has been feeling so good. So, of course, they upped the dose this time and such that the ANC should go lower. We did have to get yet another blood transfusion today as her Hemoglobin was pretty low. I didn't want to have to go back to the hospital next week, so we just took care of it today. Thank you blood donors. I need to add it up, but I bet Ally has used 12-15 bags of blood in the last almost nine months. Barring any unforeseen illness, Ally is off until March 1. 10 days. Hoping the leg/jaw/joint pain stays away this time! Otherwise, Dr B said we could page him over the weekend...so caring, that man. I must mention again that we just love Dr Broxson...and I also love to tell him when Ally is doing good. I think it truly makes him happy.

A funny story about Carly that I must share. She had some pancake syrup somehow matted into her hair and stuck to her neck. I started to brush her hair this morning and caused her all kinds of pain. She busted out crying and then started saying "my port! my port! my port is hurting" She is just two years old and thinks everybody has a port. How unique.

Thanks for all your prayers. Our friend Cory, who was in the horrible car accident 5 weeks ago today, came home today. He is a walking miracle and a testament to the power of prayer in numbers. Thanks to all who said an extra prayer for him. Tonight Ally got to give him a little hug at his fundraiser dinner.

Have a nice weekend. Hoping to have some fun pictures from the game to post soon.

Happy Birthday Mom

Ally is still doing really well...and seems very happy these days. She rode the bus both ways today (hasn't done that since maybe Sept/Oct...we had a two hour delay), she played in the snow a bit, did some homework and went to a basketball game. Besides the various medicines she takes and a few bellyaches, she was just like any other kid today. I am loving that her counts are high....but suspecting they will go down after her chemo infusion on Friday afternoon.

Thanks for the thoughts on Evan...they set him up to go to Children's on March 4th. I am still hoping it is nothing to worry about.

Tonight I am already thinking about tomorrow. Tomorrow my dear Mom would have been 61 years old. I am sad that this day is upon me...for some reason I knew it would be one of the rougher days in the "year of firsts" I hope I can hold it together for the kids. I am pretty good about keeping my emotions regarding Ally in check....but when it comes to my Mom I am very poor. Terrible. The kids have seen me cry hundreds of times about it. I am told by some wise people that this is good...that your kids should see your emotions and know how much I loved her. To stifle it would be to lie. I hope to God that is right because I don't know how else to handle it. And I miss her.

I remember last year quite clearly. She was nearing the end of her life (although we didn't know it would be quite so quickly after). She was turning 60. She spent her entire birthday at doctor's offices and also had to go to the hospital to get a blood transfusion. Ironically, this is something that I now do with Ally quite regularly. We were all waiting for her when she got back quite late and we had dinner and cake (she LOVED cake). And all the kids sang to her, but she was a little confused I remember. I actually have a little video of it that I can't bring myself to watch. So much can change in just one small year...I have had more to deal with than I hope I ever have to again in such a short period.

Oh what I would give for just a little more time. So Happy Birthday to my Mom. Somehow I think she is watching me and knows and feels my intense love for her in my heart... hoping to see some little sign of her tomorrow. A little birdie somewhere in the midst of my day....