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Last Thursday I realized that we only had 3 days to pack for a two week vacation! Yep, I thought we had 8 days and luckily a good friend pointed out that July 12 was only 3 days away! It’s summer, who keeps up with what day it is? Apparently not me!

Once I had my big realization, I couldn’t move. Talk about being overwhelmed… The house needed to be cleaned, errands needed to be run, Daisy needed a bath, and there were no clean clothes or towels. I honestly didn’t know where to begin! Then it happened…

“Mom, there’s a snake in the house”!

I was on the phone (procrastinating further) and Mason came in and made the big announcement.

Granted the 4th child did put me over the edge a bit as far as housekeeping goes. Doug’s uncle Bob came over not long ago and he was like, “Wow, you now live like “normal” people now, maybe even a bit messier”! I’m not sure but hoping he meant it as a compliment. My days of obsessive housekeeping are officially over, but I do still TRY! So for a snake to think that he could just move in… well… it was going to be either us or the snake!

So I screamed, then Mason screamed, we placed Daisy in the closet and began searching the house for… yes… a snake! I was hoping there was some mistake, did the snake have legs by any chance? How long was it? What color was it? None of the answers where what I was looking for! Except that he thought it was a black snake. I guess if you have to share your house with a snake, a black snake is the way to go! I went on to explain that if he ever saw another snake in the house, not to leave the room to come and tell me, but keep his eye on it an yell!! (After I said it, I couldn’t believe the strange words that left my mouth). Was I quoting some important words to live by? Hope not!

So, what does the snake have to do with us getting ready for this trip? Well, I got out the vacuum cleaner in search for the snake on the loose. I decided that I would clean as I searched for him. I vacuumed behind the entertainment center, under the sofa, behind the fridge, absolutely no nook or cranny was left unturned. By the end of the search, I had spring cleaned the entire house as was beginning to realize that we may never find this snake – how creepy. Have I come far enough with my O.C.D. and obsessive cleaning to share our living quarters with a snake? I DON”T THINK SO!

My friend, Barb, that I was on the phone with overheard Mason’s big announcement and our screams and insisted that I not hang up. Not because she was so worried about us, but because she thinks my life is so amusing, and she didn’t want to miss anything! Living it vicariously through the phone proved not to be entertaining enough so she decided to come on over. Was I planning to vacuum the snake? No. I had a giant bucket to put over him until Doug got home. Anyway, Barb’s the one who found the snake. She and I slammed it in the sliding glass door and Doug finished the job when he got home.

Thanks snake, who turned out to not be black!!! If it weren’t for you I would probably still be too overwhelmed to start cleaning and packing!!!

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Well, here’s my excuse for not cleaning and washing clothes up until then. I’ve been training for a 5-K run. My first ever! Did I like to run? No. Did I want to have a runner’s body? YES!!! I’d tried over the years to start running, but could never get into it. Then my friend Barb and I decided to start training together. Now I am ADDICTED! Right after we started running, my mom told me about a race here in Georgia. So basically I had 2 ½ weeks to train for it! I was running every night while Doug graciously put the children to bed. So yesterday was the big day. I prayed that I would come in 5th place, Bowen prayed that I would come in 3rd place, and Mason (realistically) prayed that I would be able to finish the race. Really, my goal was to finish the race in 35 minutes AND I DID IT! Next year I hope to finish in 28 minutes or less.

Anyway, the children and I have been at my parent’s house for a week enjoying swimming, horse back riding, and just being spoiled. On Monday we celebrated my grandmother’s birthday and the entire family got together for the first time in 5 long years. Now that Adelaine is well again we are all planning to get together at least once a year. After meeting all of them, Anika said with a big smile, “Wow, I didn’t know I had so many cousins!” Together my cousins and I have 10 children on my dad’s side. They all just loved being together.

Tomorrow we leave for the Lighthouse Retreat in the Florida Panhandle. It is a camp for children who have had cancer, and their families. We went last year and had a blast. This year the Evers’ will be joining us again. We will be sharing a beautiful home on the water. It will be an amazing opportunity for Anika and baby Mary to sleep under the same roof together as sisters! After that we will come home for a week and then leave for Maine. So far it’s been a crazy summer and I wouldn’t trade it for anything!

Angela

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Exciting Mancation

I am in the middle of a 2 week mancation.

I am updating the photos on the site here and it is mind numbingly monotonous .

When I switched the blog to wordpress a few months back, I did not update the photos at that time. Well, I see why not. I am playing with a few different options to go forward with as an online photo storage / photo album / link to blog and am down to flickr vs picasa vs nextgen (keeps crashing). If you have opinions i would love to hear them.

Flickr is cheaper as we are over the 10gig level with the number of photos we need to store.
Picasa has a desktop application that is really cool.
nextgen is free and stores on your site.

Anyways, you will see old photos show up and new photos with a different look.

I am going to stick a couple that caught my eye as well as my memories. With over 17,000 pictures on my laptop, I have a couple that have surprised me as well.

adelaine close up may 13 2007 012107 adelaine bald head cancer child walking on beach sleepless 120806 Heart Jesus and Adelaine 12_5_06

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Yesterday while I was writing the post with regards to how life was like during our 2 ½ year journey through cancer, I received the following email from Supersibs. Supersibs is a wonderful organization that acknowledges siblings of pediatric cancer patients. They offer love and support to the brothers and sisters whose lives are dramatically affected and ever changed by cancer.
Here is what they have to say about the movie…

mysisterskeeper_smallposter

While the movie, My Sister’s Keeper, is “fiction” – many aspects of what is depicted on screen is “real life” for a child battling cancer, the parents fighting for their child’s life, and the brothers and sisters who are trying to survive in the frightening shadows of pediatric cancer.

I would like to caution you, as our SuperSibs! families, regarding the decision to see My Sister’s Keeper. This film will likely be very, very difficult to see, as many elements similar to your family’s cancer journey are played out on the big screen. We are pleased that Warner Brothers offered SuperSibs! the opportunity to participate with advance screenings of the film, and we are grateful for the wonderful encouragement from author Jodi Picoult.

While we appreciate that others should see this film, we do not recommend it for SuperSibs! families. If you or others you know do decide to see this movie — please take the PG-13 rating into account, as this is not a film for children. And as always, please don’t hesitate to reach out to your support community, should you need to at any time.

After I read what Supersibs had to say about the movie, I decided that I needed to go and see it. If the general public is supposedly being educated on pediatric cancer and what that journey is like, I wanted to see for myself how the movie was portrayed.

Luckily I was already in the cancer mindset because of Adelaine’s anniversary of it, which happens to fall one day before mine and Doug’s wedding anniversary. So what did we do last night to celebrate our special union? Dinner and movie. Not just any movie, but a movie about pediatric cancer. What a party!!!!!!!

After walking (or crawling on my knees really) down the road of cancer, I sat down with my husband, along with my Slirpy to watch the movie. My main goal was just to make it through the movie, so I sucked it up with a fist full of napkins and watched as Hollywood
unfolded the story of what our family and so many others that we’ve met along the way had endured.

Going into the movie, I really didn’t know much about the story other than it was about a girl whose sister had cancer. I didn’t realize that the sister was going to have Leukemia! I would like to point out that her Leukemia was not ALL which was the type Adelaine had. Also the guy in the movie had AML Leukemia which is also not the exact type of Leukemia. The only unfortunate thing about the movie that I could see is that God was completely left out it (which is typical of Hollywood).

In order to actually sit through the movie, I couldn’t process it in its entirety during the movie. I filed the information and events away in my head and spent the entire night pealing each event off layer by layer. It was tough to see, but all in all as a critic who’s walked the journey,

I MUST SAY THEY HIT IT LIKE A NAIL BEING STRUCK WITH A HAMMER WITH SUCH PERCISION THAT THE NAIL WAS DRIVEN ALL THE WAY IN ON THE FIRST TRY!

Yes, it was that accurate!

After watching the movie, I told Doug that people are going to think that I wrote my post about Adelaine AFTER I saw the movie, which I assure you is NOT the case!

After we left the theater, I asked Doug what he thought of the movie. He said, “I think Adelaine should sleep in bed with us tonight! Just before Doug and I were falling asleep, I said, “Are you going to go get Adelaine or am I?” He said something to the effect that she would probably sleep better in her own bed and … but then he went and got her!

During cancer Adelaine spent many nights in our bed, especially just before she was diagnosed because she was so sick from the “flu”. Then because I was afraid she might die before morning quite honestly. Sometimes I just wanted to have her close in case she needed me, in case she spiked a fever during the night and needed to go to the hospital. I spent many sleepless nights worrying over her, tying to make her comfortable. My soul was crushed over the possibility of loosing her. My heart hurt so deeply because of the unknown, so we’d place her in our bed and having her there helped us sleep a little better. There were also times that we’d place her there just watch her sleep, feel her skin, smell her hair and celebrate that she is still here with us. Last night was one of those occasions, knowing that she is alive and well. It felt so nice to have her beside us after watching the movie unfold.

I felt very alone especially during those first 9 months of treatment. I knew there was no way that people could understand what our lives were like – how scary and painful it all was. Nor did I invite people into our home to see it either. Each family that goes through something like this has there own private suffering that happens behind closed doors. I think Hollywood did an excellent job of allowing people in to see and feel some of what we felt.

To those who have not been directly effected by pediatric cancer (because it may be too painful), my recommendation is GO SEE THE MOVIE!

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Yesterday marked three years ago that Adelaine was diagnosed with cancer. That day in 2006 was a dreadful day that Doug and I will never forget. I think this is a good time to share some of the darkest secret of our hearts – especially mine as a mother….

Have you ever prayed that your child would die?

I have. We have, Doug and I have cried out to our Holy God that He would just take Adelaine and end all her suffering.

The first time we prayed that prayer was the on July 1st, 2006. We knew that she was very sick, but had no idea until the Oncologist came in, closed the door and bluntly and boldly told us that our daughter had Leukemia, cancer of the white blood cells in her bone marrow. There were no words of encouragement, no comfort just the facts.

After that blow, doctors flooded our room, pushed Doug and I aside and began poking and prodding our little girl with needles while she cried out the best she could, yet really too weak to put up much of a fight. In the quiet corner of that room, Doug sat in a chair and I knelt down in front of him. With tears in our eyes we knew, we both know that our little girl, the girl that had been with us for 2 years, 3 months and 3 days was surely going to die. The pain and sorrow that we both felt was indescribable. We held hands and began a very intimate conversation. I knew how I was feeling and had to ask where his sad, broken heart rested.

We both felt the same way, like our child suddenly became a science experiment of sort. Was she now a Guinea pig that they were going to torture with tests and procedures and treatments until her body finally gave out? Even in the first few hours of her diagnosis we began to feel and see that this could be the reality for her. This was even before they began the ungodly act of extracting bone marrow from her spine while she was still fully awake. Extracting the bone marrow was merely an introduction to the pain and suffering that was to follow. (Did any of you see the final episode of “24” with Jack Bower this season? When they held up that unbelievably large needle and stuck it into his spine, I had a flash back of our daughter having the same procedure done). Only here is how it happened for her…

Doug and I chose to carry her back to the special room (the room designated for such a torture). They held her down and forced an elephant sized needle into her spine. If she moved she would likely be paralyzed. They did try to give her something for pain, but it simply had zero effect on her. They couldn’t put her to sleep because her blood levels were so low that she likely would have never woken up. So there she lay helplessly pinned down screaming in pain while they tortured her trying to get the needle in just right. After they finally got the needle deep enough into her spine to reach the bone marrow, the impossible task of extracting it began. The doctor had to pump and pull. I recall watching the doctor’s body shake as she exerted all her muscle strength into the task. She pushed and pulled the syringe over and over again as Adelaine screamed and begged and pleaded for mercy. Adelaine’s bone marrow was so clogged up with Leukemia cells that it just wouldn’t come out. I called out for them to stop. At first I thought it would end quickly, but it did not. Doug told me to let them just finished that they were almost done. I held Adelaine’s hand and looked into her eyes and promised her that they would NEVER do this to her again. I looked at the doctor and told her the same. I still live with the guilt for allowing such a thing to happen to her. Would that doctor have allowed a procedure like that for her own daughter?

Many times after, Adelaine had that procedure done. More times that I can count. But one thing is for sure. She was NEVER awake and tortured for the event as she was that day. However the extent of that pain continued for her much of the time in many different ways, especially during the first year of her cancer treatment. There was the blood infection, which almost claimed her life. The yeast infection that had her airways down her throat so clogged it was as if she was breathing through a straw. Mouth sores that were so bad she could hardly swallow. Her blood counts were so poor that she didn’t have the energy to sit up, fevers so high that her toxic chemo laced urine in her diaper nearly burned her skin, nausea so bad that she carried a hospital bed pan with her wherever she went. This is just a list off the top. It goes on and on. Our daughter suffered, she suffered more than I could have ever imagined any child possibly could. Sadly, I’ve met many children who have suffered worse, much worse.

Her suffering always took me back to that prayer that Doug and I prayed. I learned so much about myself through all that. It was very confusing for me to pray that God would take her home. Did we really want her to just die? No way. After loosing a brother, I witnessed first hand the pain that my parents and I suffered from loosing a family member, but still I prayed that prayer. I love each of my children, my family more than any love I could ever feel here on earth, but still I prayed it. As her mother and father we just wanted her suffering to end.

We prayed that God would heal her. We believe that He did heal her. On the sixth day of treatment, July 7th, the doctors pulled more bone marrow. Adelaine’s marrow came back crystal clear. No leukemia cells were found – praise God! Was this divine healing that we all prayed for due to God just reaching down and touching her, which I felt as she sat in my lap on July 2nd (our 7th wedding anniversary) as many of us prayed over her, or was she healed by the one round of chemo she had received? I guess we will never really know that answer and it doesn’t really matter. All that mattered was that she WAS healed by God. How God did it, that’s for Him to know. Still the fact remained that she was still to endure 2 years and 3 months of chemotherapy. (That is the protocol and quite honestly the law). So from that point on all her sickness was caused by the chemotherapy treatments. These treatments were in pill and injection form and were daily, (if her blood counts did not drop too low, in which case the chemo was held for a time as to continue with it would quite possibly have killed her). The side effects of chemo can be unbearable at times. The Doctors’ goal is to keep a person on the brink of death without actually killing them. It is very scary to think about and any child that does survive not just the cancer but the treatments is nothing short of a miracle.

I spent many, many hours by Adelaine’s bedside as she suffered tremendously. Adelaine would cry for me to hold her, but as I picked her up she would cry because it hurt so much. The muscles in her body were so sore that she couldn’t bear to be touched, much less cuddled. So I just sat by her bedside with her. I sang songs to her. I prayed outloud for her where she could hear my prayers of peace and comfort. I watched the clock and I wondered…

The boys were at school, Doug was at work so it was just the two of us- me and Adelaine. What I witnessed and what I felt during those hours were unspeakable. I would look up at the clock. One minute felt like hours as I wondered how she would ever make it through this, as we still had many more months to come. Then out of desperation I would cry out in my heart for God just to make this all stop. Adelaine, of course, never heard those prayers. Some may judge, especially those who are unsaved, they may think that I didn’t love my child enough if I could pray such a prayer. But I know differently. I know what I was willing to give up for her to have peace. I knew that I would never feel her breath on my cheek again, that I would never again get lost in those beautiful blue eyes, that I would never run my fingers through her blond hair again, that I would never hear her laugh again, that I would never have her friends over for spend-the-night parties, or meet her first boy friend, or see Bowen and her walk out the door together with their dates to the Prom, or see her dance her first dances with her husband and her Daddy after she says, “I do”. I would never walk down the beach with her again, or see the wind blow her hair, never have the joy of witnessing her reach her goals. So why did I pray that prayer so many times? I prayed it because I loved her, more than I love myself. It was the most unselfish prayer I think I could have ever prayed.

I new only God himself could protect her from all the pain and suffering caused by Leukemia and chemotherapy. It was during those prayers that I was on my knees, helpless, helpless to help my little girl. Mother’s are supposed to make it all better, but I could not. My heart had pain so deep, to watch my child suffer was really more than I could bear. To think of those times frightens and paralyzes me still today. To think of possibly walking down that road again is, well, just unthinkable.

September 5th will be one year off treatment! Almost an entire year has gone by already. The 2 ½ years of treatment went by extremely slowly as many times we took it day by day or minute by minute. The past 10 months have just flown by, though! So here is the truth about life after cancer, from one mother’s perspective at least…

I choose not to think about the “what if’s” too much. For every minute that I spent worrying about cancer it is a minute of joy stolen away. We prayed that God would heal her and He did. I choose to clam that healing everyday, and our whole family thanks God daily for it. We have many things to be thankful for. For one, Adelaine does not remember any of her suffering. She has no recollection of what she went through and remembers very little of her hospital stays. Therefore, she has no fear of cancer. She knows she had it and beat it, she knows she was very sick from it, but she doesn’t recall ever actually being really sick. That truly is a blessing. She is outgoing, bright and truly unscathed by any of it. Another blessing is her health…

Many people I know and talk with about life after chemotherapy are still dealing with the nightmare of chemo aftermath. It has so many permanent negative effects on the body. It can cause neuropathy so severely that some are left using wheelchairs. It can cause learning disabilities mild to severe, and it can disrupt fine motor skills (just to name a few). More seriously, chemotherapy can cause problems with any or all major organs including the heart and liver, and can also cause secondary cancers. So for many people they are not just struggling with what was lost (health) but also with how things are so different today because of these chemotherapy drugs and how their lives will never resemble “normalcy” again.

Adelaine absolutely shows no signs of any of these negative effects from taking all those harmful drugs. Why is that? The more we talk to people who are living with their survivors the more we see what a miracle it is. Honestly we believe that God has protected her little body just as we prayed for. But also we honestly believe that the powerhouse of nutrition that we packed into her little body also played a major role.

Once she started drinking the MonaVie we noticed immediate changes. That is when her health started improving so much that we were no longer felt as though we were spiraling in a never-ending cycle of pain and suffering. God used His creation of antioxidants and nutrients to help protect and preserve her body during such duress. We had one oncologist tell us to absolutely not give it to her and another oncologist who gave it away in his office. For all the stories of children I know who are suffering the aftermath of chemotherapy, none of those children took MonaVie. Adelaine still takes it today and she will likely take it the remainder of her life! I believe with all my heart that God brought our friend Fred, (who introduced us to MonaVie) into our home during the most desperate time of Adelaine’s suffering to help ease it and make it bearable and get us through those treatments. After she starting taking the MonaVie I never prayed for God to take her again – I never had to. It’s amazing to see what God made and put here for us so that our bodies can get what we need to heal and be healthy.

Now that the nightmare is over we’ve had to adjust to a new “normal”. Daily life is great. Our family is happy and healthy and we love that God has also completed our family with Anika. Honestly though there are struggles from fear. About every 3 months Adelaine gets sick. It always turns out to be just a cold or a virus, but I have a very difficult time coping. My mind begins to wonder – I just can’t help it. Last time she was sick was the worst scare we’ve had so far. Everything about the onset of that particular illness pointed to cancer. Her legs were achy, her glands were swollen behind her ears and in her groin and she had a fever. This all mirrored her symptoms when she first presented with Leukemia. It was only a virus, nothing more.

Our “new life” means that cancer will always be in the back of our minds. Once you walk down that road there is no turning back. From that point on things are different. No longer is a sniffle just a sniffle. We always wonder if that sniffle is an underlying symptom of something more serious – cancer. Two days ago, I was flossing Adelaine’s teeth and her gum began to bleed. My blood ran cold and I immediately thought, “Leukemia”. If she complains about any part of her body hurting I immediately think, “Leukemia”. Is this normal? Yes I suppose it is. When I take her to the doctor no one assures me of anything anymore. They always look as scared as I do when she’s sick. This is in no way comforting!!!!

So how am I learning to cope with this new way of life? I am learning to trust God more and more. Not that I didn’t before, but I am realizing that the things that I can not control I must give over to God. This is much easier said than done. I am so thankful that God chose not to take my daughter. She has a great life and is able to live it to the fullest – Praise God!!! BUT, in my mind I still recall her suffering and think to myself, “I never would have chosen for her to endure so much suffering. I guess God knew she could do it even though I wasn’t so sure. It was a scary, dark, miserable road, but we made it, she made it! Adelaine has a big scar across her chest from the Mediport. (The Plastic Surgeon wasn’t able to make it go away as we had hoped). I have a big scar across my heart. My child had to suffer just to be alive today.

I wish I had all the answers and had a way to end this post summing it all up just beautifully with all the corners tucked in neatly, but I simply do not and I can not. I still have so much to learn and so much growing to do. As long as I am here (this side of Heaven) I know that I can not embrace all of what God wants me to know about Him. If so, I know there would be no worries or fears. All I can do now is pray for wisdom, grace and my undeserving favor of God.

As time goes on I hope I am better able to cope with my fears when Adelaine does get sick. To fall to pieces every time she has an ailment is no way to live. My hope for her, my prayer for her is that she lives a healthy life, free of cancer and that she dies an old woman warm in her bed! I hope she enjoys life and continues to touch people’s lives. I did pray during those dark hours that God would take her to end her suffering. That was me giving her back to God saying, “I cannot make her pain go away.” “I know you can do a much better job as her parent than I”. I trusted God. I knew that in Heaven Adelaine would be so happy and healthy and loved. I knew that in Heaven she would think of me, but not feel sad because she missed me. I knew that she would never have to feel that pain again.

I asked God to take her home and end her suffering. He did end her suffering in His own time. I am very thankful that He decided it was best for her to remain here with us. Every day with her is such a gift. She enjoys life and is so happy here as a member of our family. I look forward to watching her grow up and grow old. I hope that I can learn and draw from Adelaine’s courage, strength and perseverance. I hope we all can.

Angela.

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Happy Anniversary

Today is our 10 year wedding anniversary.

One of the things I am doing is fixing the website.

When I switched over the pictures didnt make it. I have them all backed up and am transferring them into the appropriate posts today.

Here is one of the favorites.

Jesus and Adelaine

Jesus and Adelaine

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