McCravings and McMedicines

A couple of years ago, while we let the kids play in the play area at the local McDonald's, Mary Ann and I were coming up with all new McDonald's terms. I'm pretty sure it was during one of the McRib phases. Like, "this McRib sandwich is making me McSick." Or, "the smell from all the kids socks in the play area is McStinky."

I've had to add another to the long list we were coming up with back then. The McCravings or McMedicine. Amanda's chemo has given her many side effects. Very high mood swings and overall orneriness are among them. This weekend was no different. On Saturday there was plenty of whaling and lamenting about having to have the chemo and how "its the worstest day ever." We do what we can to try to accommodate the moods but have found there is very difficult line to define between where we need to be the parent and live by the rules that were set, and where and when to give in to a child that is going through very difficult times and is heavily drugged. Sometimes it is very tough to know what side to lean towards.

When Amanda gets cravings for something it can be a tough battle with her until she either gets what she is looking for, or gets distracted enough with something else. Since early morning Saturday, Amanda had the craving for a McDonald's hamburger. She was asking for one before 10:00 am. We tried to hold her off as long as possible but paid the price for waiting so long. We didn't get out until maybe 5-6 hours later. She spent a lot of the day crying, screaming, getting her massive headaches from the crying, and overall having one of her "very bad days." When we finally hit that drive through it was like flipping the switch. She downed the hamburger and no more crying, she started talking normally, she perked up, and became more like herself. I don't know if I'd every call something from McD's medicine, but it sure cured what was ailing her yesterday.

On a side note, after the burger she had enough left in her to go to Hobby Lobby to go find some more projects to keep her busy. While wandering through the store, Erin pointed this out to me. She said, "Dad, Dad, look. I'm on the crayon box." I think Amanda pointed it out to Erin but Erin was pretty excited how much it looked like her. You decide.
After Hobby Lobby we hit the snow cone shack for a quick cool down. Everyone downed their snow cone pretty quickly except Amanda. She only ate about half of hers. We try several different ways to keep her hydrated and drinking during chemo because it helps with the migraines. But sometimes no matter what we try she just doesn't seem to be able to drink as much as she should. We didn't push our luck because right after the snow cone and we hoped in the car and we heard, "I'm getting a headache." That means head home quick and stay on top of it before it becomes unbearable. We still dream of when we can get out further away from home as a family but it seems we don't get too far from home lately. You have to take enjoyment in the little moments whenever you can.

Summer Break

"School's out for summer!!!" - Alice Cooper

Thanks Miss Moulton. There's a reason you are Teacher of the Year many times over.

Amanda made it through third grade. Perhaps barely. Her teacher pointed out that it was because Amanda picks up on everything so quickly. My comment was "you should see her when she doesn't have cancer." I am so grateful to her teacher. She was absolutely fabulous to work with. We appreciated the patience and kindness shown from her and the class.


Keeping Amanda busy this summer is turning into an interesting problem. She thinks she is better than she really is. She wears out so easily. Fortunately she has scaled back her lofty aspirations from summer's past and is still content with small activities. She's also been a bit more emotional and clingy lately. Scott's entire family went on a cruise. We stayed behind. It's hard getting left behind and I think she's keenly aware of it. She doesn't mind what she's missing as much as she misses the people. Most of my family is gone on a trip this week. I think having everybody gone was a a scary reminder of her fear of being alone. Amanda can be hugging me till I turn blue and she will still say "I want you." She's always been this way. Cancer's just made it worse. I suppose some emotional fear comes with the territory. I'll work on dishing out some extra attention.

I have to admit that my thoughts are a bit jumbled. On one hand, I've had this strong desire to start living again, to make my time on earth a bit more meaningful, to be more grateful, to love my family even more. On the other hand, I am painfully aware of so many people that have lost or are losing their life to cancer. I do no understand why Amanda is still here and they are not. She has something to offer all of us, and I have the responsibility to build her up so she can can accomplish it. I do no fully understand what it is, but I know that her life is a gift and that she is meant to be here. My heart aches for those that cannot have what I do. I am so fortunate to have my children. I suppose being grateful starts with living happily. I'm finding a lot more joy in my children and am trying to accomplish as much as I can within my means. We are starting small; Amanda and I are working on a garden. It is a great start together and I am tickled with how excited she gets about it. I am so grateful to still have her.

What do you expect

When you put the nine month old in charge of blogging, you can only expect a month going by with nothing entered and a whole lot of drool on the keyboard.
I suppose I shouldn't bestow unearned blame on my children, despite the kick I get out of it. In all honesty, life has been feeling (dare I say) more "normal" lately. I've already dictated several blog entries in my head, but life has become BUSY and I find myself distracted with other priorities. I took my doctor's very blunt orders to stop having children and did something about it. I find myself in slow recovery mode again, but with the added benefit that Amanda is doing great and doesn't require the intensive care as she did before. She had clinic today and I told the doctor that she's had her best month in over 18. She's even sleeping better. The doctor told me that the last intense treatment round (which was last October for Amanda) is so hard on the body that it takes a good 6 months to bounce back. This month has given me a glimpse of the energetic, creative, curious, and playful person that Amanda really is, and the hope that it might be part of our life once again. It's nice to have back. During clinic there was a child Amanda's age, new to treatment, screaming at the top of his lungs about how he did not want to be there! It choked me up - it's hard to see. Amanda was the same way at the start of treatment. Clinic days ringed of frustration and fear. I am so grateful to be where we are at in her treatment and to see her strong resiliency. It's a lot easier to have hope now.I really have three beautiful, wonderful children. I'll have to remind myself of this often during roid rage week!

ONE YEAR AGO

Amanda age 8 - April 2009

"Did you know it was all going to go so wrong for you?"
- Pink Floyd

Yesterday was Amanda's one year anniversary for being diagnosed with Acute Lymphoblastic Leukemia. There are so many thoughts in my head that I can't even begin to figure out what to say. I thought I'd highliht some pictures from a year ago. I asked her what she thought about her one year mark. She said, "It's been hard but worth it."

So often I am asked how I knew she was sick. I think as a mother you always know when your kids aren't quite right. But looking at these pictures you can see that despite being sick she still happily lived her life. Six months before she was diagnosed she started having a lot of migraines, was ornery, and seemed fatigued. Over time she started loosing her appetite, was constantly pale, and slept more than usual. At the end of February the headaches turned into almost daily fevers and she developed bone pain throughout various places. At this point I knew something was very wrong, but it took two months of doctor's appointments and a week long hospital stay to diagnose her. The cancer was undetectable by standard tests as it had not spread past her bone marrow. It took a bone marrow biopsy to confirm it. Her doctor said that the cancer was packed in there so tightly that she could hardly get a sample out. I'll never forget that day. It was a terrible day.

Equally difficult was the following day. We found out our baby had stopped growing and was dying. The doctor told us to have an abortion. I left his office to go meet with Amanda's doctor to start chemotherapy. The feelings of those two days are too difficult to describe. I was on IV's myself and so sick and run down from my pregnancy. I could barely take care of myself, let alone my children. I had just found out I was getting laid off from my job while carrying the health insurance and Erin had just qualified for early intervention. Everything seemed impossible to face. I will forever be grateful to family and friends for picking up the pieces of our shattered family at that time. One year marks are a funny thing. They flood back memories and give you that permission to reflect. Time slowly heals the wounds.

A year later my kids are still recovering from various flu bugs,ear infections, and cancer treatments are still a struggle. It's better, but still a struggle. Amanda had clinic this past week. She woke up from a lumbar puncture and screamed in pain whenever she sat up. I hated that she had to experience the pain, but glad the nurses were able to observe what I've been describing for months now. It fortunately triggered some extra help from her doctor and we now have a different game plan for the next LP. Cancer and chemotherapy still rule her life. She roid-rage screamed for two hours yesterday about all the activities she misses. She has every reason to complain. It is still a challenge. But she said it best, it is worth it! Her cancer is curable and every day we are one step closer to that cure.

Amanda the day of her baptism, February 28, 2009. The following day her fevers began.

A month into Amanda's fevers - I was four months pregnant and on a PICC. Nobody in this picture was well. This was our first family outing after months of me being in bed, and it was our last outing before Amanda was diagnosed. It's hard to look at this picture now because deep down I knew something was very wrong with all of my children, but was too sick to do much about it.

Amanda was hospitalized a few days after this picture was taken. I think this picture shows what leukemia looks like.
I took no pictures while at the hospital. I had too much of my own medical equipment to pack and frankly, I just didn't feel like capturing the moment. Thanks for the pics Teri. Knowing that Amanda's cancer is curable made moving forward with treatment more manageable.

Still on the mend

Amanda woke up full of energy today. Ocassionally there are moments where I have glimpses of the energetic person she once was. She breezed through some homework, headed off to school an hour earlier, and seemed quite happy. A long ago friend visited this weekend (sorry Ty, I forgot to pull out the camera). It made Amanda's day. His family made her a photo album of good times past. She's carried the album around all weekend. She's been talking a lot lately about missing her old life. She seemed to really need a walk down memory lane.
This picture is not the best of her, but shows off her sickly pale skin blending into the paint a few days ago. I think I'll ask the paint company to rename the color to "pale cancer." She looks much better today. I wish I could say the same for the rest of us as we continue to try and rebound. Sometimes I look at Scott and myself and think that we don't even closely resemble the same people. There are times I don't recognize myself in the mirror anymore from the fatigue and stresses of life. I know Scott is tired too. It just come with the territory.

As promised, here are some pictures.


Easter celebration - decorating eggs with Rick and Carol. None were eaten, but plenty were decorated.

Egg hunt at Grandma's house with the cousins. It was much nicer having it on Easter rather than Halloween.
Will and Scott doing their nebulizer thing.




It's easy to lament about fatigue and stress. I find a lot of healing and happiness with our little guy. He just discovered his tongue. He thinks it is the coolest thing ever. He sticks it out all day long, and it's really long. He's a man of many expressions - see for yourself how he just brightens the day.

HOUSE OF ILL'S

I had a bunch of pictures to post but my computer is unwilling to cooperate and I don't feel well enough to take it on. An IOU is in order.

We have been non-stop sick at our house. I am sick (literally) of viral bugs. And the last few have been really bad. Both Will and Scott have been on nebulizer treatments, bronchitis abounds, antibiotics have been dished out, and the night is rattled with the sounds of coughs and the booger sucking machine. Whatever we've had, you don't want it! Now that we are trying to integrate back onto society the inevitable viral bugs are creeping in despite our best efforts. Amanda had about two weeks of coughing and complaining. Whenever she turns the same pale color as our wall paint color, I know she's pretty sick. Amanda has missed more school in the past month than in the past four months. Her accelerated school program doesn't slow down for cancer. She has moments of struggling to keep pace, but now that she is feeling better, she just glides through the work. She is starting to act like herself again, the sign that her body is on the mend.

I recently gave a talk in church on grace. I needed extensive study to feel confident in giving it. And despite the hours devoted to it, I can sum it up in one experience. A few days last week were devoted to ongoing fevers between all of us. All but one of us. Amanda never ran one. By all logic she should have. She is the most vulnerable. If she had run a fever, Scott and I would not have been well enough to take her in. I am grateful for God's tender mercies and for prayers that invite them in. It is so hard to take care of sick kids when you yourself are sick and overwhelmed by numerous responsibilities. After looking at the thermometer numerous times in disbelief I know that a little heavenly help is sent to get us through all of this.

The Face of Chemo

"I've got a long way to run." - Collective Soul

Amanda continues with her monthly chemo treatment, daily oral chemo drugs, knock her out weekend chemo, and 5 days a month of "I don't feel myself" steroids. She had a great clinic day on Wednesday. We were in and out in a hour. Despite a great clinic day, she is giving us plenty to worry about. She has a bad upper respiratory infection and chemo isn't going to help her get over it easily. Her doctor thought she was healthy enough to push through, and her counts were surprisingly high. Her sinus and eye infection didn't bring her counts down as low as we thought. She developed an allergic reaction to the eye drops and ended up with a very swollen eye for several days (and a very ornery demeanor to match). So to be sick on top of it, needless to say, she is run down. Very run down. I'm just crossing my fingers that it doesn't turn in to pneumonia. She has lamented several times about being tired of being sick. She has every reason to complain. Unfortunately, she has a ways to go still.