Monday, July 9, 2012

Leukemia - How is Jemma? - Day 22

Considering the fact that Jemma has Leukemia she is doing as well as can be expected. Her body is responding to the treatment and she is on the long road to recovery. Unfortunately, the treatment she is currently undergoing involves taking lots of different medications which have many side effects. Since the last update Jemma has experienced several of those side effects.

As I mentioned before, her energy level continues to remain steady at a level far below normal. Although we try to go outside every day we don't stay out long and much of the time outdoors is spent sitting on benches. We took a walk over the weekend and passed a playground. I think this was the first time we have ever passed a playground where she did not want to stop.

The rashes she had on her hands and feet still are present, but they are very minimal. Occasionally she complains about her feet hurting when she stands up. These rashes are caused by the chemo which affects nerve endings in the hands and feet.

Today Jemma received two different chemo treatments. As a result of these treatments she complained of a stomach ache and had shaky hands. Stomach aches are a common complaint of recipients of the drug Vin Christine. Luckily they usually only occur on the same day the treatment is given. Shaky hands is a less common side effect, but a known side effect of chemo. It could come and go throughout her treatment.

Today some friends brought dinner. I wasn't sure if Jemma would eat since she had been eating all day, but she managed to squeak in a few more bites. Increased appetite is a very common side effect of steroids. Here is what Jemma ate today:

breakfast
Johannas berries
1 organic hotdog and bun
left over pasta and sauce
home made green juice

lunch
carrots
tomatoes
salad
blueberries
pita bread pizza
prune juice

afternoon snack
three tortillas with ground buffalo, tomatoes, spinach and cheese

dinner
yams
cherries
one meatball
more home made green juice

I probably forgot a few things. I feel like I have been doing dishes all day. Luckily so many of you have brought food that I haven't had to prepare all of this. I told my husband that I still feel like I am taking care of a family of five at meal time. I'm happy she's eating. Hopefully it will help her to grow a little.

Unfortunately constipation is another common side effect of the Vin Christine she is receiving. As you may have noticed from the list of foods, several of them counteract constipation. In addition to the foods to make her go, she has had a few doses of stool softener. My husband and I have been eating the same foods as Jemma, so although she does need the stool softener, we certainly don't.

Although this is not a side effect, on Friday, day 19, the doctors had a lot of problems with Jemma's catheter. They analyze her blood every two days and use the catheter to extract the blood. Unfortunately when they tried to withdraw blood it wouldn't come out. Two doctors tried and they made Jemma lay in several different positions, but still there was no blood. There are two main reasons this happens. The first is lack of fluid in-take, and the second is a blood clot blocking the tube. First the doctors put a protein liquid into the catheter to try to break-up a possible clot. The plan was to wait for one hour and then try again to extract blood. Luckily it worked.

Now back to the side effects. Everyone knows that loosing hair is a side effect of chemo. Jemma experienced this side effect today. Actually it began yesterday when I was away. Today after she brushed her hair I noticed it was everywhere. So I told her we would cut it off after breakfast.

Neither of us were happy about this, but we both knew it had to happen. She hid in the bedroom when it was time to cut her hair. I found her, hugged her and talked about how hard this entire experience is and then we went into the bathroom. I could barely see to cut her hair as the tears were rolling out of my eyes. Then she said quite normally "I think I should save all this hair so I can use it to stuff a pillow." She wasn't crying at all.

 I got her a bag to collect her hair in and left the room to cry while she cleaned up.

A few minutes later when I came back I found she was over it pretty quickly. I think her loosing her hair is much harder for me. When she still had her hair I could sometimes pretend she wasn't sick. Seeing her now just makes the cancer so more real. This is difficult and I hope none of you ever have to experience it. I'm just grateful she's a little kid who doesn't make all the adult connections. She knows she's sick, but she doesn't feel terrible and is just a happy little girl.

Wow - That was difficult. I plan to post another update on Jemma this Thursday and will post updates each Monday and Thursday unless something major happens in between. Thank you again for all your support.

7 comments:

  1. I love you guys and can't imagine how difficult today's task was. I will keep praying for you all and sending strength and well wishes.

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  2. As difficult as it was to write, thank you for the update. Jemma has been in my thoughts a lot lately. Love and healing prayers for you, Jemma, and the whole family.

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  3. I teared up just reading what you had to do-- cut Jemma's hair. I can't ever imagine how hard that must have been for you.

    Jemma is a strong and lucky little girl to have you by her side

    Box is in the mail let me know when it arrives.

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  4. Hey Julie,

    Because I'm beyond disorganized at this point in my life, I need to ask you for your mailing address again. LAST time I promise!! I had it saved on my computer from the last time you sent it to me, and then my computer crashed.......some stuff came back, some stuff did not. Sigh.... THIS time I am writing in my organizer/date book immediately.:-)
    Also, I have a new e-mail address:
    romikumu41@gmail.com

    Thank you!!

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  5. Julie,
    I can feel your emotion in your writing - it's very powerful. I know you're strength matches your love. Jemma is so fortunate to have such a wonderful selfless mother. Funny thing hair, doesn't seem to matter until it's not there. She looks just like a little princess fairy with her new doo. You are in my thoughts.

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  6. Hi Julie and Jef,
    We are in Belgium right now but our thoughts are with you and the kids. Jemma is just one brave girl to take her treatment so well and adjust to all little and big challenges coming along with it. We are back home on Saturday, please let us know if we can be of any help or watch the kids upon coming back from the States. Meanwhile our warm regards and best wishes. God bless you all, Filip,Helen and kids

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