Vincristin

I am sorry to report that our Ally is really suffering the effects of a month long round of Vincristin. Being at the end of the round, it has all piled up and compounded in her system. My loyal followers may remember how it affected her the first month... and once again we are seeing all the effects again. Belly pain/constipation... joint pain/back pain...lack of sleeping...and not removing herself from the couch. She is having trouble walking as her knees hurt so bad, it is a struggle just to walk to the bathroom. I took the kids over to my sister's house today so that I could run to the grocery store and I seriously considered carrying her into the house. She has gained quite a bit of weight from the steroids, so I reconsidered and she made it in to their couch on her own.

I wish I could report better news, but it is what it is. We are waiting for her to come out of the steroid fog. I am thinking that she is maybe about 10% better today...just a smidgen of talking instead of none. We spent our afternoon trying to do a 500 piece puzzle, whew. And I should have been doing a thousand other things, but I just sat right with her and rubbed her knees. I feel so bad for her...I am always wanting to take her pain away. She has been refusing the Tylenol with Codeine (a lot of kids take it just to sleep) but tonight somehow we coerced her to take it. I hope it works. My dear husband was up with her last night and they both tried to sleep in the recliners but weren't too successful. He also gave me a break this evening and sent Evan and I to the WSU game. It's always good to get out. Which reminds me that I have to go tell him to go to bed right now, because we both keep staying up until 1am every night trying to get holiday stuff done. I am ready for January to arrive.

I am hoping that these side effects get better and not worse so that we can try to enjoy Christmas with a happy girl.

Christmas Miracle

Early this morning Jerad took Ally to the blood lab for a scheduled finger prick/blood count. He went early, because we felt about 90% certain that she would need a blood transfusion today and we would be headed to Children's. Her hemoglobin was low last week, and with the chemo they gave her we thought it would only go lower.

About 11:30am we found out that she did NOT need a transfusion!!! I kept calling it my Christmas miracle. How nice to not have to go there this week. I seriously was choking back tears when our nurse Robbie was telling me her numbers. Her ANC was also higher...over 1000...which is a good hedge of protection with the holidays coming. Robbie said "Merry Christmas" and I said "yea, this really makes it much better for us." She explained that Ally's bone marrow must have started producing some red blood cells and then she told me that that is exactly what they want it to do. And by the grace of God we changed our plans and went and got ice cream instead.

She is still in her sad/emotionless/silent stupor. I tried to engage her in several projects throughout the day. We made a few Christmas ornaments and I also let the kids do their gingerbread trees. (I am glad I am done with that mess until next year.) But anyway, nothing warranted a smile or a conversation or anything and by the end of the day I was actually crying. I felt so bad because I bent over backwards all day to try to please her, but I felt like I failed. And those who know me know that I don't handle failure well. Ah well...the steriods are done as of last night. Last time it took about five days for her to come out of this and be back to herself. And that should hit right about Christmas Day. Pray for us!

I was surprised by the large number of emails/comments/posts etc about my "Better Days" song that I posted yesterday. I had no idea that it would touch so many people. Most of the people that it touched were fellow cancer survivors/families and I was so happy that you liked it. I never want to post things that can be depressing, but I know that I do just by telling the truth of our story. I questioned posting the song, but now I am so glad that I did. Anything I can do to help even one other person is worth it to me.

Two prayer requests for two little hospital friends: Baby Lincoln is having a rough time. We love that little guy and he can bring joy to our face in an instant. And a friend of a friend, Skye Getter, who is actually in Cincy right now and suffering terribly from her chemo after another relapse of her kidney cancer. She is a friend of Ally's friend Jackie, who also has kidney cancer. We haven't met her, but I read her Mom's blog everyday and pray for her much.

Thanks for all the support and love and hope everyone enjoyed this first day of winter. (I can't believe it is winter.)

Silent Night (and Day)

Trying to summarize our weekend here on Sunday night. Where do I start....Jerad and the other kids were gone for the weekend. I stayed home with Ally. And I would love to paint a Norman Rockwell-esque picture of Ally and I doing all kinds Christmas merrymaking...but it just wasn't meant to be. I will just be grateful that we made some good holiday memories earlier in the month. Ally really seems to be suffering from the steriods...now we have two full weeks worth put into her body over the last three weeks. They really bring her down and we spent almost the entire weekend in utter silence. Emotionless. No smiles, no words, even pulling away from both Jerad and I as we try to give her a little squeeze or a kiss. It is almost as if she has a fog all around her, and I can't get to her. Communication is pretty hard...about the only time she spoke was to ask for a certain food. She was asking for all kinds of grand foods almost every hour. And making food all day long can tend to get to me too....but it is better than the alternative I always remind myself.

I know it could be much much worse right now. It is sort of sad to say, but that is what I focus on sometimes. Instead of thinking about better times, I instead think about worse times and try to rationalize in my head that everything is all good at the moment. Even though it could be worse, it could really be so much better too. We could have our normal lives back and not have to deal with any of this. I have to say it is quite painful as a Mom to see your child in the state that Ally is in. ESPECIALLY at Christmastime when most kids have all that magic dancing in their eyes and you can just sense their excitement building. We don't really have any of that. When all the other kids line up for Santa, we pretty much have to pull her over and she painstakingly goes through the routine with him. Every picture I have taken lately is of her with this really forced smile. You will see it in my video below.

I should not complain, but it has been a really hard weekend for me. Seeing my daughter like this hurts. Being confined in the house during the holidays...VERY DIFFICULT. I missed going places with friends and family and doing all the things normal people do. Ally's counts are so low right now...we had to skip some of our favorites: WSU game, church, shopping, parties, etc. I do owe a huge thank you to Lisa Wygant for having Ally over to her condo on Saturday so I could do some last minute Christmas errands(...and I am still not done. UGH.) And I owe another huge thank you to my elf friend Jenny Zollars who stopped by, picked up a load of gifts, wrapped them all, and brought them right back. People are so kind to help us through. And thank you to all the other offers I got too...

Last week we were driving around looking at Christmas lights and a song came on the radio. It is called "Better Days" and I distinctly remember listening to it last year...with everything going with Mom...and hoping that this Christmas would be different and better in 2009. I even copied down the words and sent them to my friends Suzanne and Nicki one night. But that was LAST year. And no, things are not better, but worse. I remember thinking that the only gift I wanted was my mom...and I got it momentarily, but then that was it. So this year, when it came on, my wish has changed. The only gift I want this year is my daughter. I want my Ally back and the cancer to be gone forever. The gift that only God can give me. She is ultimately his, but I would like to borrow her for a very long time. Here are the words....they hold so true for me. And the song is the in the slide show below.

And you asked me what I want this year
and I try to make this kind and clear
just a chance that maybe we'll find better days
'cause I don't need boxes wrapped in strings
and designer love and empty things
just a chance that maybe we'll find better days

So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again

I need some place simple where we could live
and something only you can give
and that's faith and trust and peace while we're alive
and the one poor child who saved this world
and there's ten million more who probably could
if we all just stopped and said a prayer for them

So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again

I wish everyone was loved tonight
and somehow stop this endless fight
just a chance that maybe we'll find better days

So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again

'cause tonight's the night the world begins again

And here is a slideshow I created of our past two weekends in pictures. To remember. Because I am all about remembering....

Christmas Shopping Day

Another day closer to Christmas break. Tomorrow is her last day of school for a while! While most parents may look upon the time off as a bit of a burden (how do they fill the days?) I now look at it in quite a different light. I am so looking forward to it. It relieves me from a lot of stress..I don't have to send her into the germs, and I don't have to worry about her missing anything either. Don't get me wrong, I like for her to go to school. But I also like when we don't have to worry about it. It is so so stressful for me to wake up every morning and just not know. I never know how she will feel, if she will go, if she will resist, etc. So now we can just sleep in and hang out and HOPEFULLY remain well.

Ally is not looking so hot these days. I went in to school today and had lunch with her in the cafeteria. She loves when I go to school, but it is hard for me to do so with also having a two year old. Anyway, she just looks tired all of the time. She has deep circles under her eyes. The tops of her eyes are red and basically very sad looking to me. She had a very sad demeanor about her now, but again it is all caused by the steroid. The decadron really pulls her down and also prevents her from sleeping at night. I also have the dark circles under my eyes, you might notice. I think I have aged 10 years in 2009. Really.

One of my kids favorite days in Christmas years past was to go shopping with their Ma and Pa. They always head to Target and they each pick out a gift for me and Jerad. They then go out to eat (Red Robin) and back to MaPa's to wrap the gifts. Well, today was shopping day! Of course, Ma wasn't there this year, but Pa took care of the whole day...he brought a friend to help him along. Which is good when you have two five year old boys (my sister's boy went too). I was leary to let Ally go....she shouldn't have gone with her counts so low....but the Dr's always tell us if there is something that is really important to the child, you have to let them do it. And this would fall in that category. So against my better anti-germ judgement, I let her go. I stressed a lot of hand washing to my Dad. They came back happy and crawled right into bed.

I am looking forward to spending the weekend with my first born girl. I love to have time with her just to myself. Even if we are trapped in the bubble again. Our friends will visit and maybe we will have a sleepover in my room.

Holding on

Our girl is holding her own as of late. With her blood levels balancing precariously on the edge of needing a tranfusion, three rounds of chemo currently in her body, and attending school basically full time, I have to wonder how much more she can do. Every morning I wake up waiting for the ball to drop, but she keeps on going. She actually asked to go to bed tonight at 8pm. I never know when to push her or let her fall back....it is a tough call to make as a parent...but the little bit of pushing has seemed to help her this time. The doctors always say that the more active she is, the better everything goes. It she doesn't move, her joints start freezing up from the chemo and basically everything slows down in her body. We will keep on going...two more days until Christmas break. I am saying multiple prayers a day that she does not get sick just in time to miss my Dad's Christmas party.

One thing that I have noticed about her lately is her reluctance to play. She has pretty much forgotten how to do it. I know she has her crafts, which are still going strong, and nails and such. But she really never plays. Whereas in the past, she would love to play with her friends, now I find her staying much closer to me. She chooses to hang out with the adults over the kids quite a bit. In the past she would jump at the chance to play with a friend after school, and now it can take some convincing. It is just another sad side effect of this whole thing. Her childhood is pretty much gone, at least for the time being, and I am not sure it is coming back. She is faced with so much and it is quite a bit of a burden for an eight year old to carry. She has always been mature, but this has taken her over the top. I do find myself daydreaming of the times when she will ride her bike again or run or dance or just be a kid. I hope it comes. It is quite difficult to not see your child do these things.

But it could always be worse. I know this. The hemoc area lost another patient this week. A 17 year old boy who had what Ally has....ALL. I hate that any parent would have to go through this. He was just diagnosed in October...and only lived two months. Last night, I could not sleep. (Well, this is pretty much every night for me.) But last night I just kept having vision's of John's Dad. He was always there with his son, he rarely (if ever) left his side. I didn't know him too much, but we exchanged stories and commiserated in the hallway a few times. Why, oh why, does this keep happening......

I was overwhelmed by people emailing me or commenting on the blog and offering up their help to get me through to Christmas. The crazy thing is several of the people I have never met or only met once. But everyone wants to help and we are so lucky for it. And even crazier, Janel said YES. I am actually letting people help me, which is probably what I should do more of...I am realizing. This may mean that I will get to bed before 2am and will be fresh and ready to go when Ally calls me into her room at 3am. And 4am. Hah.

Right now, we are just trying to hold on until Monday for a blood test and see where we are for that transfusion. And by the very grace of God, Ally does not get chemo again until the 28th. It just happened to be how the protocol was set up. And it is the only week skipped on purpose through this whole thing (all others were delays because her counts were too low). What a very special gift we got in that schedule. A greater power is working. Keep working....keep working... on saving my girl and bringing back that little girl I once knew who knows how to ride her bike and PLAY.

Chemo Day

As expected, little Miss Ally is on her way back downward a bit. We have had several good weeks, even though she has been getting chemo, and I knew our time was coming. She is still holding her own, but the side effects of the chemo are setting in. Her ANC is at 230 (low) which means we will no longer be able to take her out, take her to basketball games or church or whatever we have been doing. We will have to rely on our friends and family to entertain us through the holidays, which isn't all that bad. Dr B still felt she should try to go to school this week...only four days left and then she is off for 16/17 days. She failed to go today because of some painful back pain. We have not experienced this yet. She woke up just screaming/crying in pain four times last night. It is almost like a pinched nerve and it is right at the site of her spinal taps. The Dr thinks it could be caused by the Vincristin, which is famous for causing all kinds of joint pains. She is also walking a bit off these days (again, because of the Vincristin) and maybe that is causing some spasms in her back. We did make it to the clinic today for two more doses of chemo and they are expecting Ally will need another blood transfusion within the week. Thanks to all of you who donate blood...which reminds me that it is time I do the same.

We took some treats for our clinic nurses and paid a few visits to our in-patient friends. They seem to be having a string of some very bad luck up there....another patient is in ICU tonight and not expected to make it through the night. Please keep all the families in your thoughts, as always, but also the nurses. I know this is wearing on quite a few of them and I honestly don't know how they do the jobs they do. But thank God for them.

Although we were warned that her rough patch is coming up (the next two weeks could be hard), I am fully aware and fully grateful that I am not currently in the hospital. You have no idea how many times a day I say a prayer that we make it through the season without a fever/illness bringing us to the hospital. I can almost handle anything, as long as it is not that.

That being said, I am completely stressing out about the number of things I have to do before Christmas. And really, I have no ability to go anywhere unless she goes to school...which is iffy. And I have a lot of gifts left to buy. And it is not a good time of year to call in any favors from my friends either. And my husband and 2 well kids are leaving me here for the whole weekend while they travel to Jerad's hometown for a visit. So yes, I am still human, and I still stress a little about the small stuff. But then I tell myself....it will get done...and I can only do what I can do, etc.

We did enjoy a good weekend filled with Santa visits and a couple of xmas parties. We went to my Dad's house and put up a tree and some decorations for him. On Sunday we attended a very special Christmas party put on by the charity..A Kid Again...which is like a local special wish foundation for the sick kids. They had all kinds of games, crafts, entertainment...and then they gave each one of my kids about $50 worth of presents to take home. Not just Ally. But Evan and Carly too. It is so nice that they recognize that the illness effects the whole family, and our other two suffer quite a bit too. If you are looking for anywhere to make you charitable contributions, this is one charity that is quite worthy.

I will try to post some weekend pictures later. I am super busy with my part time accounting job and it is calling me back to work. Yes, at 11 pm at night. I will continue to burn the midnight oil.

Thanks for following our story. I continue to learn of or meet people that read this blog and I am always surprised by how many of you do. And you keep on following, never giving up on us. I am grateful for the support.

Ally's Army is marching on....closer to the finish line everyday.

You better watch out

Santa Claus is in town. And Carly ran away with the Reindeer.