Wednesday, July 15, 2009


Everyday it's something. A little surprise for me and when it comes or how it comes I never know until it gets here. Everyday there is some new twist or turn in this thing we are doing called leukemia. I keep waiting for "normal" or for things to "quiet down", but it is just not happening. So, I guess I better not settle in yet. Today, about a half an hour before I was to give Ally her antibiotic (which they trained me to do yesterday) they called and told me to stop. Just in time. Now they want to treat her with a more specific antibiotic...I am not sure if something else grew in her blood culture, but this antibiotic would go more to the heart of the infection. The home health nurse was on her way to retrain me with this particular kind of infusion. I called the clinic to see exactly why they were changing it. They told me she grew something I cannot pronounce or spell, but the bottom line is it could be an infection in her port. I calmly asked a few more questions, and they told me the blood culture they took today would tell them more. We would know if the port is infected, and if the antibiotics would take care of it in 2-5 days. AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHH. That was me screaming after I politely hung up the phone with the nice hemoc nurse. Seriously. Seriously! Why can't I have a normal course of treatment like everyone else that has ALL?

So the nurse came out, and re-instructed me on how to deliver these infusions to Ally through her port. It amounts to lots of sterilization and four different pushes of medications in four different syringes. Not hard, but a little time consuming. Oh, and by the way, I have to do it three times a day now. For ten more days. At 3pm, 11 pm, and 7 am. I am hoping I can do it without waking her up for that 11pm shift. And 11pm is blog time too--nice conflict there. My refrigerator is full of medications and I have another arsenal of medical supplies in boxes too. Here is one set of everything I have to do, ready to go for tonight.
On the non-complaining front, Ally is in really good spirits. She created all kinds of masterpieces today with perler beads. Evan loved them too. They are little designs that you create and then I iron them together. Madden and Regan even came over for few hours this morning to create some designs. I do feel happy today because Ally is happy, for the most part. We had another HUGE thing happen in our house today. We all sat at the dinner table at the exact same time. This may sound like a small thing, but for us HUGE. It hasn't happened successfully in weeks, maybe since this whole thing started. And the other HUGE thing is....I cooked the dinner. Yes, the food wagon was absent today and Mom filled in. Ally loves these things called chicken rolls. In an effort to actually get her to eat, I tried it. And she ate one. She is eating very very little these days. Some days I think she only gets a few hundred calories. Anyway, since the dinner thing was such a big deal for us my lovely husband had to get the tripod out and take a self-timer shot for everybody to view. (all his idea) And we have no idea how to use the self timer, so we had to get the camera manual out, too. We really wanted you to enjoy this picture, and our dinner was cold by the time we ate it as a result. Do you see the little artichoke in the picture?? Little known fact about me: besides popcorn, I think artichokes are my favorite food on this earth. And I actually bought one and made it myself.
Please keep the prayers going that this infection is not in her port. I am hoping it just clears on its own with the antibiotics that I will faithfully administer to her. I do not want her to have another sugery. That would just not be a good thing for her right now.

Four months ago today my Mom was freed of this horrible disease. She is resting in peace now and I can't help but think about her today and everyday. Although she is not here, she is still giving me the strength to fight this battle for my daughter. She taught me how to fight...I'll teach Ally...and together we will win.


  1. First of all--artichokes! :) Yes! And I have yet to contribute to the food wagon--I was not aware that it had come to a stop and I was waiting for that to happen so that I could pitch in. So, let me know! I know of a few other people who want to help with that as well. My friend Elaine said her mom's group at church wanted a turn, so I might have to let her know.
    I'm glad Ally is feeling good but ugh I do hope for her that they figure this infection out and it's not the port. Is it common for the port to get infected?
    It's hard for me to look at that picture because, sorry, but that is just mini-mom sitting at the end of the table there. I can't get over the similarities.

  2. omg. Janel, you are a rockstar. Seriously, you should get CEUs toward a nursing degree for all you're doing. I am super, super impressed. And praying the bacteria is already all dead, gone.

  3. Janel...

    YOU my friend are the most awesomest!!! Each time i peek in on you I see you search for the positive...the "normal" in an completely foriegn landscape. You lead us all with your strength and your resolve...keep your head down and press forward Sister...and know that we are all behind you pushing if you begin to falter...

  4. Your mom is watching over you daily and, yes, she taught you how to be the fighter you are today. I've loved having Ally back--to hear her talk and be herself again. Like I've said before, you should've become a nurse...

    On a side note, the food wagon is still up and running. (Sorry for the delay in the email this week-I've been in class) Anyone who reads this and would like to be added is welcome to email me at Our volunteers are WONDERFUL!! Suzanne

  5. Oh Janel, that last sentence really got me. I can't believe it's only been four months since your mom passed...and here you are deep in the throws of another struggle. We're here with you.

    Love that family pic, btw!

  6. Janel,

    Your strength is amazing and inspiring!!!

    Love the family photo!!!

    We have some hats for Ally so I will drop them off soon. or I will give them to Brooke.

    You are always on our mind and in our prayers. We are looking forward to getting a meal and play time set up for you from St. Lukes Mom and tots. I know Tracy, from your kindermusic also wants to help with preschool transportation or anything else you may need once school gets started. We are here for the long haul to try and makes things a tiny bit easier.

    Jenn Kac

  7. I've been wanting to ask, and since you brought it up today, here goes...I know you mom battled cancer. Was it Leukemia or a different type of cancer?

  8. mom had bladder cancer. Stage 4 right at the onset and was treated at the best of the best...the Cleveland Clinic. They gave her a 30% chance after her surgery. This was in early 2008. In 2009 it metastisized to her brain. They tried to battle it with methotrexate, the same chemo Ally gets in her spine. She spent over 65 days in the hospital in 2008 alone. And I was there for almost all of those days. I hate cancer probably more than anyone! My dad is a cancer survivor..he had melanoma in 2002, but is now 5 years cancer free.

  9. Janel, Artichokes rock!! and so do family sit down meals. Great photo.
    Wow, those are a lot of shots. I know you and Ally can get it done, though, and before you know it, 10 days will have successfully flown by.

    Isn't it amazing how lucky we are to have the parents that we do? I am thankful everyday for my dad, and our experiences, and wouldn't trade him for a healthy dad for anything. It still hurts that he isn't here, and it has for the past 14 years, and probably will for the rest of my life. I know they will all take us though this and everything else that comes along. It seems crazy to say that we are lucky, but we are. And Ally's lucky too.
    Still pulling for you guys every day.

  10. Janel, you will absolutely nial this medication administration thing. I know you will keep it all together. I think the family dinner picture is one great family photo, and your dinner looks amazing!! Your organization skills (which I've always admired) are kicking into high gear now. If there's anyone who can handle this chaos, it is you!!!

  11. I have such a vivid memory of you sitting in our Rose Manor kitchen with your "Artie" that you had made! Maybe it sticks in my mind since I dislike them so much! Glad to hear about the family dinner, it looked so nice. I pray for you on this tough anniversary day; but I know that last line of your blog rings true. LOVE

  12. I loved that last sentence, Janel: "She taught me how to fight...I'll teach Ally...and together we will win." That is the spirit, right there... taking such good from such bad... the family photo is a keeper- I hope for lots more meals for you as a family (with or without artichokes... :)

  13. Janel - thanks so much for sharing the story of your mother's and your father's cancer battles. Hallelejuah that you Dad is cancer free! Ally WILL beat this as well! I am so sorry that your mother lost her fight. But, she is pouring all of her love and strength into you and Ally right now. Her love, strength and God's grace will see you and Ally through to the victory over cancer in your family once and for all!

  14. Loved today's picture and I think I remember those chicken rolls from your shower???? Am I right. I also miss your mom even though I am many miles away. We are all better people because of her and I know I am a better person because of John and his long fight with multiple myeloma. Keep up the good work.

  15. I'm glad to see that someone else's daddy spoils them and lets them sit on their lap for dinner at the table. Craig has Lily on his lap probably at least 4 nights a week! And Janel, I don't think you're spoiling Ally. When I'm not feeling well, I want someone to pamper me too. You're just being a caring Mom, and a damn fine one! Keep your chin up and know that you are doing your best each day, one day at a time. :o)