Fabulous

"How's Amanda doing today?" - Dr. B.

"She's doing great. I've been so distracted by her brother's health that I haven't even noticed how amazing she is doing." - Me
"Doesn't it feel great to say those words?" - Dr. B.
"Yes!!!" - Me

Amanda is doing fabulous! I've been do distracted by Will's health that I really hadn't even noticed. She went an entire month without a migraine. She hasn't missed school. She's keeping up with her schoolwork. She even started art lessons. Having a meaningful creative outlet has boosted her moral significantly (thanks for getting it going Carol). She still has her Methotrexate crash on the weekends and her five days of monthly treatment are still very hard on her and the family. But overall, she is much better and we are starting to see part of our daughter coming back.

Primary's was so delightful to visit this last week. Amanda and I walked around and saw all the amazing Christmas trees and decorations. She rode in the elevator with Santa Clause. Donations and gifts for children were flooding in the doors. All of the staff were upbeat. Nothing radiates the Christmas spirit the same way as a children's hospital. It is charity at it finest.

GRATITUDE

Crazy hair day at school.

Everyday hair day.

It's nice to have hair again.

We are still reminded that Amanda has Leukemia. The side-effects vary from day to day. Sometimes her hair randomly falls out, right now it is growing in again. Sometimes she gets bowel problems. Other times she has insomnia. Her face is bloated from the long use of steroids. Headaches are still quite frequent. She continues to have worse than normal side-effects to certain drugs. Scott and I just about pulled out our own hair out of frustration during her last treatment round because she was so ornery. But.....she hasn't been to the ER since June. She hasn't been hospitalized this past year. She's keeping up in an accelerated school program. Even though she's getting tired of chemo and it's hard side-effects, she is the healthiest and happiest she's been in two years. That is something to be grateful for!

Will is making a lot of progress. He is tolerating Nestle Boost. He's more active, alert, his bowels are acting more normal, and he's sleeping better. I still have not found the balance of foods that are bothering him, but I have some ideas. I must thank my sister-in-law for the helpful advice. When you are a bit lost it is wise to follow the footsteps of others that have already gone down the path (how I wish I'd figured that out sooner). We'll follow-up with Will's medical team in a few weeks. I am far more encouraged that we are not facing major medical problems. And that is something to be grateful for!

And so I don't forget Erin.....She said a very articulate and long sentence yesterday. For a kid that screamed more than she talked two years ago, I am amazed and grateful at the progress she has made. Once again, that is something to be grateful for!

The Medical Mystery Tour

When watching mysteries I'm a bit clueless with figuring out who-done-it. Given that my ability to figure out a good plot is limited, I cannot expect to figure out what is causing Will's failure to thrive. We still don't have a good diagnosis for him. Each specialist seems to have their own theory and way to treat it. We're still among a lot of lab work. A lot of problems have been ruled out - no brain tumor, his liver is not the culprit, and whatever happened in-utero is not what is currently contributing to his growth problems. We are being told it's a nutrition problem, but we don't know what kind of nutritional problem. For now Will is to try a greater variety of protein based formulas. It could be as simple as just figuring out food intolerance's. So, if he reacts poorly and doesn't gain weight the plan is to do a scope of his gut next month. Growth hormones are on hold until the gut issue can be resolved since he has to be absorbing his food properly in order to grow from it. I'm a bit discouraged with the long process this is turning out to be and watching him go through so much discomfort. But it is manageable. Watching all the kids go in and out of the hospital this week reminded me what we've already been through and helped me reflect that our medical drama could be a lot worse.

That's a lot of beads!

Amanda had chemotherapy today. All of the staff were surprised at how good she looked. Her psychologist said he didn't recognize her because she's grown so much and looks so much healthier than the last time he saw her. Her counts are good, her health is currently stable, and she seems to be handling the chemotherapy well.
Amanda is eager to show off her Color's of Courage necklace. Each bead represents a specific action accomplished with chemotherapy. It includes such tasks as each steroid round, each time her port is accessed, each hospital visit, lumbar puncture, emergency room visit, etc. As you can see, she has aquired A LOT OF BEADS!!!! She is wearing it with pride.

Complicated

Amanda is doing well, so Will is going to steal the spotlight for a bit.

Will went to the Endocrinologist. Her exact words, "He is complicated!" Her jaw about hit the floor when she read his medical history. She couldn't believe that he survived and that he is doing so well developmentally. She fortunately did not diagnose a major disease or disorder. Rather his problems are a result of him not getting what he needed in utero. He'll start growth hormones after an MRI next week (a brain tumor has to be ruled out, but is not suspected). She talked about how growth hormone is produced and processed. She indicated that the low growth hormone is causing malabsorption of food, which would explain the many barf covered loads of laundry I've done this week and his weight loss. All of this stems from the liver. His liver took the brunt of his growth restriction as an infant. It was the lingering problem when he was born. And it is starting to make sense that it is what may be causing a good portion of his failure to thrive. It's a relief to start getting some answers. Everything that has been suggested so far has just made him more sick and miserable. The growth hormones should help him grow and digest his food better. We will still follow-up with a GI doctor to ensure that there isn't more going on. And I'd better come up with a good distraction for giving his daily injections in the butt. He's going to need them for 2-3 years, but don't tell him that!

SUPERHERO

"When you're stumbling

it's gonna take a little time
to make it to the other side
so don't miss the diamonds along the way."
- Sheryl Crow

Superhero was the theme among my girls for Halloween. Even their favorite dinosaurs joined in. I was glad Amanda was able to get out. Weekends have become a lot more challenging for her since her Friday night Methotrexate dose was increased. She's wiped out for most of Saturday and Sunday. I was happy to see her determination to be able to get out and enjoy herself so much. It meant a lot of naps and pain medicine. But she had a really good time. Her superhero costume seems so fitting.
I got such a kick out of Will in his costume. He waddled just like a penguin from all of the warm layers of clothing. It's hard to keep him warm because he's so skinny. And unfortunately, he is loosing weight. His doctor's are concerned. He tested negative for food allergies, and this means a huge expansion with his diet and a relief on my part (been there, done that!). But he's had allergy-like symptoms for some unknown reason. The doctor is leaning towards an inflammatory bowel syndrome. It's apparent something is wrong. With every increased food item he seems to struggle with vomiting, gagging, and a lot of indigestion. We'll meet with endocrinology tomorrow and the feeding clinic/GI doctor next week. I'm hoping between these visits we'll finally get moving towards a better diagnosis and treatment for him because what we are trying now isn't working for him.

Extremes

"What goes up must come down." -Blood Sweat and Tears
Amanda had, dare I say, one of her best recovery's from a lumbar puncture last week. She did puke in the car on the ride down from nerves (mental note to self, I took the vomit bucket out way too early!) But she looked really good going into the procedure. Now keep in mind, while she is asleep they stick a needle in her lower spine to extract cerebral fluid and replace it with a lot of bright yellow chemo (I've unfortunately seen the big syringe). It is not the easiest of chemo treatments. But she woke up looking pretty good, not groggy and uncomfortable like usual. She was eager to eat, play video games, and didn't need to sleep it off for as long. She was more active at home and eager to get out of the house, as you can see with her creative method of packing her hydration pack around outside. Everything went as well as hoped for after a lot of trial and error. A few days ago she had a 24 hour stretch of acting like herself again. She was bubbly, VERY talkative, friendly....everything that Amanda was before cancer. She has not acted like this for that long in over two years. It was wonderful to experience again. It was such a good reminder that once her body heals, her bright spirit will dominate once again.

But......there always seems to be a but........today I came home from a lovely luncheon with a friend that I haven't seen in about 10 years. Amanda had that look on her face. The headache hit for several hours with crying and cringing, the vomiting lasted for four rounds, and she looked a terrible shade of green. The reason she was doing so well a few days ago was because her blood counts were too high. She's had such a big growth spurt that all of her chemo doses were increased last week and today it hit. Despite a rough day today, the glimpse of her acting like herself again brought a lot of encouragement that makes bearing all of this a bit easier.

thought I'd share some pumpkin pickin pics

Growth Spurt

I can't take credit for the great pics. Dad, you can experiment on our family any time!

Amanda woke up today and looked like she's grown two full inches. She has been eating me out of house and home recently and it finally kicked into her height rather than her waist. She is changing very rapidly into a young tween. She doesn't like the changes. She wants to stay little forever. But her bright mind and rapidly growing body are taking off whether she likes it or not. I looked at a picture from when she first started treatment and it is just a faded memory of what she looks like today. I know when she was diagnosed that we were ending the little girl phase and she'd emerge as a beautiful teenager. We are right on track.

She's had a great week. She looks good. She is happy. She has a lumbar puncture next week and we will quickly be reminded that she is still being treated for cancer. She has made the connection that these procedures make her feel yucky and are no fun. I reminded her that we are on the home stretch. We are counting down the few that are remaining. And I reminded her that we finally we have a good game plan to help her be more comfortable. She's really come a long way in handling it all better as I can tell she is more confident.

Will met with his feeding specialists yesterday and they gave us some good ideas for helping him gain weight. I finally found a formula that he can tolerate - despite it's $$$ price tag (just google Elecare and you'll choke!) One can only lasts a few days. But he is well worth it.! We're going to start treating him for reflux and have special diet and eating instructions in place. If he doesn't gain weight within a few weeks we will go back for a bunch of testing. The goal is to avoid a feeding tube. Knowing personally how miserable they are, I am VERY motivated to get his weight up. We have some physical therapy ahead and several follow-up appointments. Because he's doing so well developmentally he has a very good prognosis. And knowing that eases my mind greatly. Now it's his turn for a growth spurt!

Tired

I know I have cute children. Some days I have to work harder at reminding myself of this. On the more challenging days I sometimes find myself wondering how I would react if I was observing them for the first time. It is then much easier to smile and be amused by their strong personalities and unique quirks. I find myself needing to do this when overwhelmed and tired, which has become the new norm for my life.

I've titled this "tired" for both Amanda and myself. School is in full gear. Keeping up is a challenge. After juggling and experimenting with activities and what she can keep up with, I've had to remind myself why we keep it simple. The headaches and vomiting have increased. It is her body's way of letting us know that it is exhausted, or fighting off viral bugs. There is no running to piano lessons, soccer, or gymnastics at our house. There are few if any movie outings or days at the park. Amanda is rarely involved in running errands or heading out to the store. All energy goes to school, homework, and a little bit of socializing. That is how it will stay for at least another year. She doesn't always know what she is missing, but it is discouraging when she does. It is just a season of our life. Seasons eventually change.

I've been on a reading kick lately. I really enjoy reading about scientific discoveries and research. I've read some great information pertaining to childhood cancers. I could write an entire blog entry on the interesting facts I've learned. But what stood out was the section on caretakers and the toll it takes on them. Particularly that it is quite common for parents to try to diminish to other people how hard it is and to sugar coat how they are doing. I am the poster child for this. Honesty opens up vulnerabilities. But lately I find that I cannot hide how tired I am. I have been for quite a while. I even switched to glasses from contacts to cover up the chronic bags under my eyes. Caring for Amanda while I was sick was physically exhausting. I've not had a recovery period. There were days I found myself crawling up the stairs asking God for help to make it up because I was too weak, only to find myself lifting her and bearing her weight because she was weaker than me. It was hard. Really hard. Then Will came and I found myself waking up every45 minutes to 2 hours for over a year. That's just the physical exhaustion. The emotional stress and worry have been great. Some days I feel that I will crack under the pressure. I am not super human. I still have and need a lot of help. It is easiest to open up to close friends and family. I appreciate their listening ears. Often I am asked "how do you do it?". The answer is always the same - I just do. I have to.

Will is starting to sleep better. He stopped nursing and for some odd reason that helped. But in doing so, he started loosing weight. I think it's because he started walking, but regardless he is heading the wrong direction on his growth chart. We're hoping to meet with some specialists next week to figure out what to do. I can't get him to eat or drink enough. We'll just do our best until the doctors can give us some answers.

"It smell's like a poptart in here"

.....says Erin to the furniture store clerk while shopping for a new bed. The comment has nothing to do with my blog entry. I just needed a good icebreaker to distract from my neglected, long absence. I do thank anybody still reading this as my dedication has waned a bit.

I am constantly asked how Amanda is doing. The answer is always the same...it depends on the day. It seems lately that she is starting to have many more good days than bad. Throwing up in front of everybody at Grandma and Grandpa's 50th anniversary dinner, well, that was a very bad day. It just depends. But overall she is more energetic, stronger and healthier. She is sleeping much better. She is also back at school and keeping up with a full day. I'm glad to have her back at school, even though it's reminded me of germs and the fear of fevers. The summer was somewhat challenging. She thinks she can do more than she really can. The heat was hard on her and it triggered more migraines, so a lot of down time was forced on her. She has every episode of Phineas and Ferb memorized. I was glad to hear her get more excited learning about the water cycle rather than the adventures of Perry the Platypus.

Anybody want a BIG castle? It will only take up half your basement - but keeps them busy.
We enjoyed a quick trip to Park City. A hotel swimming pool and the alpine slide were the highlight of the summer.
Will celebrated his first birthday. I can't believe a year has already passed. Birthday's have new meaning at our home. They are really reason to celebrate and be grateful for what we have. We find ourselves back in the throng of medical appointments again. He's not gaining weight like he should. When you have a one year old that eats like a six month old and seems to have a lot of food aversions, it becomes a bit of a problem. We're waiting to get in to an endocrinologist. I joke with Scott that we've been to every clinic on the first floor of Primary Children's between our three kids. Looks like we're expanding to another level! It's yet another challenge, but one worth taking on. We're totally in love with this kid!

Relay for Life Central Davis 2010.mp4

We were sent a link to this post on Youtube. Pretty cool job done by the people who put the Relay for Life together. You will see some familiar faces on there as well.

RELAY FOR LIFE 2010

Amanda participated in Relay For Life. Words cannot describe how much she enjoyed herself. She ran around for hours laughing and playing. She proudly walked the survivors lap while people cheered. I choked back tears watching as she radiated happiness and life. She has come so far in one year. We are so grateful to be able to celebrate her life!

We are in awe at the amount of support we have received financially. It has far exceeded our expectations. We are still getting donations and will post a final tally. It's because of donations like these that Leukemia ALL has such a high cure rate (95% for Amanda). Thank you so much for helping fund research, cancer cures, and support for families battling this disease.

We especially need to thank Rick for walking over 50 miles. Yes, that's right, 50 miles!!! He started at the beginning and went all night until it ended - no sleep and very few breaks. You always leave us in awe!

Many other thanks are in order.

Scott, thanks for having the desire to do this and for taking what little time you have to organize our team.

Thanks Dad for the great pictures, helping with all the hauling of stuff, and proving to me that you really are quite handy in the kitchen.

Scott's parents - for the many long hours with Will, always being around to help whenever needed, and for adding a lot of hours on the track.

Mom and Carol - for herding cats (my children)

Jenny & Robert - thanks for sticking out a very long night and raising such awesome teenagers.

Dayan, Yassah, and friends - for being such awesome teenagers! I'm amazed at what great kids you are. You were more than willing to help and you guys put in some serious track time!

Deanna - for taking my request for a few items to feed the crew and turning it into a table full of delectable delights.

Dan, Teri, and kids - thanks for being great friends that are always there for us. Hope you can walk tomorrow Dan. You are seriously going to be feeling those amazing 16 miles.
To Erin - for taking one for the team and being the only person to actually sleep.

Craig, Jean, Kids - for helping out with the food sales (learned a few tricks for sweet talking the Health Department) and for continuing to support us though far away.

Ed, Viki, John - thanks for being willing to do whatever was needed. We appreciated you sweating it out during the super hot hours.

Matt, Mary Ann and Mikey - 7 months Pregnant, in that heat? Enough said!!!

Donna - for the great ice cream making tips.

Thank you to all our friends and family that stopped by, wanted to come and couldn't, and those that passed on well wishes. We appreciate all of the support!

Relay

I've had a request for a quick link to Amanda's team page for Relay for Life.

http://main.acsevents.org/site/TR?pg=team&fr_id=21760&team_id=755882

We'd love to see as many friends and family there to cheer her and others on. There will be fundraising activities there to keep the young ones entertained. Thank you so much for the support we have received! We are always in awe with how many people are thinking of her.

EUREKA!!!

For many months Amanda has endured the wrath of miserable lumbar punctures. She had clinic today and for the first time dreaded it. Not because of needles or all the usual anxieties. She feared it because of the headache she'd get from the LP. After a lot of family prayer (thank you Scott for the beautiful blessing), persistence, and incredible support from her doctor's I am so happy to report that we FINALLY are having a recovery free of a screaming headaches, pain, and vomiting. All of her doctors agree that she is very sensitive to the procedure itself, not so much the medication they are using. They are administering the chemo much more carefully now. And something as simple as letting her rest and not moving her for a good three hours post-recovery made a huge difference. She's one of those "special" patients that needs a little extra care. All of her staff at Primary's went above and beyond today to accommodate her. We are so grateful for them. She's still on IV fluids for a few days, and the beloved IV Benadryl and Zofran are prepared for attack if needed. So far she is eating, drinking, and happily watching Phineas and Ferb while taking care of her virtual pets online. It is such a wonderful change to have her recovering comfortably!

Amanda is looking forward to Relay for Life at the end of the month. Thanks to so many of you for your generous donations! If the cash flow is a bit tight a great way to still show support is in letting Amanda know that you are cheering her on - it really brightens her day. When I told her that survivors circle a lap with everyone cheering for them, her face lit up!!! She is really looking forward to it.

Join in the Relay for Life

This is a call to all friends, family members, and any other followers of this blog to join us in our first fund raiser for the American Cancer Society. We are getting a group together to walk in the Relay for Life event on July 30th and 31st. This event will be at Barnes Park in Kaysville and will be a 24 hour walk to raise funds for the ACS. Since Amanda's diagnosis early last year we have been on the receiving end of many gifts and charity. We always wished there was some way to pay it forward and be able to do something for others going through similar situations.

Though we can't possibly do all we would love to be able to do to make life better for those going through different stages of cancer, we can make an effort no matter how small. It all adds up to greater things for someone whom you may never know or meet. We hope you will join us either as a team member walking, or as a donor to help the great cause. If you are interested, please click on the link to learn more, donate, or join our team.

http://main.acsevents.org/site/TR?pg=entry&fr_id=21760

The name of our team will be Supporters of Amanda. Whether we have several on our team or just a couple of us, we will be trading off as we walk for 24 hours. It should be a good time. We will provide more details as often as we can.

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.