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Day 6

To say that this weekend has been a rollercoaster emotionally is a massive understatement.

Peyton continues to improve. Her spirits were high today, she got out of bed for a while to enjoy a story from Miss Tina, Zack’s mom. She even indulged in a nice little temper tantrum, which I subdued fairly quickly and then secretly rejoiced because if she has enough strength to get cranky, then she’s definitely doing better. Her lips are almost completely healed, her tongue and throat looking better. The chest x-ray showed that there is still pneumonia, but it hasn’t gotten any worse, and stable is good.

Story time with the Rozmeski family…we were very lucky to have them close to us for a few days, the kids were each stuck in their rooms, but they could hang out by the doors.

This is Peyton’s visiting gear…protective mask to keep her germs in and everyone else’s out, and the Pole of A Thousand Medicines.

Her ANC went up! Only up to 50, but it is a move in the UP direction, so I was very happy about that. Her hemoglobin dropped to 8.2, I wouldn’t be terribly surprised to see that tomorrow it has dropped again and then she gets some blood. Her platelets took another dip to 48, but still above transfusion level…thank God, because I am still flinching each time I think of her hive reaction during the last infusion of platelets. I’m crossing my fingers that Tuesday morning counts will show improvements all around and that it will show that she’s turned the corner. She has asked for some pretty new pajamas, which I will be heading out to Target for, so if she can work up the energy to care that hospital wear is darn ugly, that’s a great sign!

I know that we will still probably be here a few more days at the least. They do want her counts to be moving steadily up and as much as I would love to go home, I want her to be less vulnerable before we leave. As weak as her immune system is right now, I would not want to go home without this virus and pneumonia under complete control. I have seen too many kids leave with trace pneumonia only for it to rear back up and end up back in the hospital anyway.

Peter had to head back to his job today. It was hard on him and very hard on the kids. Deciding to take this job was a tough one for us, it took a lot of long and hard consideration of all the “could be” and “might happens”. We have been very blessed that our hospital stays have been very few and far between since Peyton went into maintenance, and I guess we forgot a bit of that panicky feeling. This is truly the sickest Peyton has ever been through treatment, she’s had fevers, she’s been sick from chemo, but this is our first really bad, trashing her body sort of illness. It was a harsh reminder that even though we’ve flown through the last months with good health and a happy girl, her body has been through a lot to keep cancer at bay and it is still vulnerable.

Today I found out that Peyton will have to stay on the Acyclovir (the anti-viral) medication throughout the rest of her treatment as a preventative measure. I would hate to think that she would have to suffer through more outbreaks of this pain, so I’m fine with it. Today’s doctor explained that this particular Herpes I virus can affect so many parts of the body…the lungs, kidneys, liver…that keeping it under control is very important. I’ve already seen what it does on a superficial skin level, I would be horrified to think what it could do to her organs.

They are still holding all of her chemo, which has apparently given her body some time to recoup. There is still no definite answer on the hair loss…one doctor is pretty sure it’s just a reaction to a lot of chemo over a long period of time and that this might be what we can expect for the duration of treatment…another thinks it could be a reaction to the virus, affecting her body’s ability to metabolize the chemo and therefore allowing it to beat up on her system. Either way, the hair loss is slowing, and I guess to everyone but me, it really isn’t that bad. Because I see her head every day, I’m in love with each and every strand, the terrible thinning, the baldish spots that show through are worse than they seem to everyone else. Most everyone else has said it doesn’t look that bad, I just know how much used to be there and how thin and fluffy it looks now. She’s nowhere near the bald I feared she would be, and because its long enough to cover over the thinned spots, we’ll be going for that “Donald” comb-over until it grows back. I hope that when we restart chemo we don’t suffer more mass hair loss, I don’t know how much she could lose before getting that stringy and limp look again.

Please keep the Kesler family in your prayers. Although they are the ones suffering the greatest from her loss, each child that passes continues to have a profound affect on the families trying to hold onto hope for their own child. It brings every fear and anxiety to the forefront and we are again faced with the stark reality that for all our efforts, it is usually not the cancer that kills a child, it is the side effects from the treatment, the weakening of their bodies that allows other diseases to take over.

Love your family, don’t ever take a moment for granted. I pray God’s love and strength surrounds all of us and that we trust fully in His power. I often expect Peyton to blindly trust me, to take the medicines that taste so bad, to endure the pain of the procedures because I know that it is what has to be in her life. I love her through them and I comfort her before, during and after. I am working hard to blindly trust the Lord that he knows what he’s doing when he requires us to hurt so much, to accept what feels so very wrong and painful. I pray for that love and comfort to come to all of us.

Please give special prayers for Zack Rozmeski, Presley Dickson, Brooke Martin, Jimmy Reichert, Connor Hernandez, Matt Ermish, and all the many many families in this cancer world.

f.r.o.G…fully relying on God

4 Comments on “Day 6”

  1. #1 Gail Frank
    on May 5th, 2008 at 10:32 am


    Thanks so much for your uplfiting comments about not taking a moment for granted….Sarah had her tonsils out 2 weeks ago, and I endured 48 hours of a FRACTION of what you CancerMoms endure on a daily basis.

    I just left Susan and Presley at the hospital and you gave me a chuckle about Peyton and Miss P having a contest and getting a pony!Here's hoping your sweet girl's numbers go up and the virus goes away. And sympathies about Sierra; I know just how hard losing all the precious children hits you all.


  2. #2 Jade
    on May 5th, 2008 at 10:41 am

    Glad to hear Peyton is doing well. You don't know me but I follow your family's journey daily – thanks for sharing – it means a lot.

    My child has ALL too, he is in maintenance. He is doing very well. I just want to let you know that my friend's daughter started to lose her hair a bit in maintenance too. It was just out of the blue, but my friend figured that it could have been from a recent increase in her Vincristine dose. They raised her dose due to BMI increase. The nurse told her that some kids do lose their hair throughout maintenance and some don't, but usually if they do, it won't be the full head, its usually partial.

    My friend bought a "hair growth stimulating" shampoo that is used for people with thinning hair. She got it from her local salon in a town of 3000, so I'm sure in Tampa, they must have a place that sells it. She used it on her daughter and tried not to do much with her hair in way of hair ties, hats, etc. Evenutally, the hair loss did stop and never did occur again throughout the rest of her maintenance. Last Friday, she took her last 6MP pill. She's all done – she's very happy, healthy and enjoying her pig tails!

    God Bless – Praying for Peyton's counts to come up so you can go home!

    on May 5th, 2008 at 1:49 pm

    So glad that Peyton is feeling better! Hope this trend continues and you guys are home soon. Praying for Peyton and all of you.

  4. #4 Alayna
    on May 5th, 2008 at 2:01 pm

    Hi Anissa,

    Glad to hear that her ANC is at least going up. Peyton does look so little and sick with all that medicine and her little mask – it just breaks my heart! I know, to an extent, you get used to seeing your child like that, and it doesn't affect you constantly, but that in and of itself is a sad thing. No one should have to get used to seeing their child sick. I'm praying that healthy, good days are on the way again, full of laughter, playing and some temper tantrums to keep you humble!