Sunday, February 28, 2010

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.

6 comments:

  1. Terri Barnett ShumakerMarch 1, 2010 at 6:28 AM

    Janel thanks for the prayers for Dad, he is having a cath done this morning. Will be sending prayers all the others way too.
    Enjoy the good times with Ally.

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  2. Prayers on their way from Wisconsin for Maggie, Lincoln and Uncle Bill. I hope you get a good story this morning, girl. Thanks so much again for coming up north for Dad's funeral. You're a GREAT friend.

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  3. Janel,
    There is so much truth in what you say. Going through what you are going through right now does change you. In fact, it will probably be one of the hardest things that you will EVER have to do. You will never be the same person... you will never think or feel the same way. And as much as you probably hate to hear it (I know I did), you will be a stronger, better person because of it. I used to get so frustrated when people would say, "You are so strong. I just don't know how you do it." It made me angry because I didn't feel strong at all. I felt so fragile, like the smallest thing would make me break into a million pieces. I always felt like a strong person had to make a conscious choice to be strong. I, like you, never had that luxury. We battled through cancer because there was no other choice. You do it because you have to. You do it because you love Ally so much that it hurts. Nobody can understand how hard it is to make a child that you love so dearly repeatedly go through procedure after procedure, medicine after medicine, poke after poke, and watch not only their body, but their spirit break down as well. What is hard for someone who has not gone down this road before, is the understanding that you not only have to be there for them through all the emotional and physical struggles of cancer treatment, but you also still have to be their parent. You still have to teach them and discipline them while they are going through their own personal hell. Unfortunately, the world does not stop when you need it to. Plus, it is not only the medical team that makes them follow the protocol... the parents play a big role in this as well. It is such a terribly hard thing to do to make your child take medicine that you know will make them sick, or go through procedures that will make them hurt, or isolate them from other people and the world around them. They just want you to make them feel better and comfort them and sometimes I wonder if they really understand why you make them go through the torture of all the treatments. The constant internal struggle that parents go through and the fine line between treating them and hurting them is a terrible responsiblity to shoulder, but I know you can do it, and do it well. Because YOU ARE a "strong" person. Because you have so much love in your heart for your little girl who is the center of your world. (cont. on next post)

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  4. What I didn't realize at the time was that I was making choices all along the way. I chose to get up every morning. I chose to make my little girl's life as happy and comfortable as possible. I chose to make the absolute best out of every day and find happiness and joy in the small moments. I chose to be by her side through every good and bad day. I chose to make her go through the treatment, because these kids DO get better and they DO go on to lead normal lives. Although you may not realize it, you also choose these things every day. You choose to fight this terrible disease with Ally through all the good and all the bad. What I'm sure that you don't even consider (I never did) is that some people don't. Some people give up and never get out of bed. Some people drink their problems away. Some people turn to drugs. You don't. You fight and you are strong. And there is something to be said about that.

    I'm sure that you would love to go back to the innocent, carefree life that you used to have, without all the worry and heartache. Where peace of mind was something that you had, even though you didn't realize it. Where it was still possible to think that the chances of something bad happening to you or your family were so small that they would never happen to you. Those things are lost and you will never get them back, but you have a perspective on life that few other people do. You will be more compassionate, more caring, more sympathetic. Your children will also be this way. You will appreciate the very smallest things in life. There are very few things that you will take for granted. It's not fair that you never signed up to be a part of this group, but I suppose life is not always fair and you have to take from it what it gives you.

    Hold on to the little vitories along the way, the good stories, the good days, the good moments. I know they seem few and far in between at times, but keep looking... they will come. Sometimes they are already there, just hard to see. I understand how hard it is when you are surrounded by defeat and sadness all around you. Try not to let it discourage you. Just keep remembering that children get through cancer ALL THE TIME. I've found that it also helps to remember that because you are part of this group other people who have suffered like Ally and your family have will gravitate towards you. They will tell you their stories because they know you understand and because they need someone to listen. It is another heavy weight to bear, but with all of the tales of struggles there are also just as many, if not more, tales of victory.

    We love you so much. Stay strong and keep the faith.

    Shelly Bohman (Ashley's mom)

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  5. Sending strength, hope, and continued faith. Always.

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  6. Thank you Janel for your prayers. We are scared, but we are going to be one of those success stories too that the nurses in the clinic talk about to parents one day. Maggie is going to pull through this just like Ally will.

    Like Ashley's mom said, we are choosing to stick by her and not give up faith. We will try to be "strong" because we love our child more than anything.

    Please keep praying for Maggie as we continue to pray for Ally. These kids are strong. They will make it.

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