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.

Catching Up

First, I must apologize for the extended absence. Life has felt a bit more normal lately. Blogging reminds me of cancer - thus the inclination of avoidance.

Second, I must thank the many people who follow this blog, the many new people who find it (I don't know how, but welcome aboard), the people unknown to us , and the many people that continue to show support and encouragement. Thank you!

And third, the most important part, updating how Amanda is doing. I must say, whatever immune system she has left is working like a champ! She really is doing so well that I am amazed. She's super cautious at school and whatever she picks up from her sister (the biggest germ culprit) she's done quite well at fighting off with no fevers - which means no emergency trips to primary's! She finally succumbed to a bad sinus infection a few days ago. It went rogue and spread very quickly into her eye. So she's been out of school this week and is resting a lot. Grandma sewed her an eye patch and she is milking the sympathy of her plight to the best of her ability.


She has been keeping up with her drinking. It is making a HUGE difference with her overall health. So to any other cancer fighters out there, stay hydrated! It helps a lot. I figured out smaller water bottles are a lot more kid friendly and motivating to drink. Her teacher is helping with reminders, and she earns a pretty decent allowance for empty water bottles. Her shopping list keeps expanding, which increases her motivation. Getting it to happen takes some effort, but it's working.

She is having a lot of sleep problems again, mostly during the first five hours after going to bed. There are nights she's up till 1 in the morning, or she wakes up 6 times in a jittery agitated state, or she talks in her sleep and argues that she really isn't asleep. Waking up means crying and complaining that she can't fall asleep or lamenting about being alone. We started to notice an increased pattern on her antibiotic nights. She takes a weekly antibiotic to prevent pneumonia. Again we got the "that's not the normal side effect" lingo from her doctor. She's developed quite a list now. Deviating from the medication is taboo with a curable cancer so we just changed the dosing schedule. It has only helped slightly. Perhaps when her infection clears up it might improve a bit more. I'm running out of ideas. Alas, a good night's sleep is just not meant to be at our household. As a result of the insomnia anxiety she has developed quite the bedtime routine. Her bedroom illuminates from numerous nightlights, she now has to have the radio on, the hall light on, a Kleenex up the nose when stuffy, the song "You Are My Sunshine" sung, and her clan of proxy stuffed animals must be in just the right place. I call them proxy because I finally figured out they all represent the people most important to her. She "adopted" animals from Will and Erin (more like stole them). The rest were given to her. I think each important family member is represented somehow. Cute, yes. Cute after my 6th visit in her room telling her go to sleep, not so much.

Hair, Beautiful Hair

Amanda came up to me recently with a comb. I asked her, "What do you want me to do with this?" With surprise I realized that after 8 months of baldness, she once again has hair to take care of. We both commented about how we'll miss her scalp. She was very cute bald. Her new hair is thicker, darker, and has a bit more wave to it than the old. We'll gladly take it.