Archive for April, 2007



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Adelaine now gets many compliments on her sheek Pixie cut!

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Adelaine went to the clinic on Thursday to have her blood levels checked, and her ANC is still at 500. Although her levels are not great, they have decided to continue her chemo. They also discovered that one of the ear tubes we just had put in is apparently falling out. We have a follow up visit scheduled with the ENT next week.

Anyway, as you know for much of the first 8 months Adelaine was feeling so poorly that most of the time all she did was lie in her bed and watch TV. About 2 months ago we started giving her this juice called MonaVie, and she has felt much better since then, her energy levels seem that of a normal, healthy child! We are so amazed! I am planning to share our MonaVie story soon, but first I would like to share some startling news, you should probably sit down for this…

Doug and I began doing research on childhood cancer and cancer in general and we are now much more aware and informed on just how big and powerful cancer is, especially cancer among children. Here are some sobering facts…

Today, according to the American Medical Association, the chances of developing cancer are 1 in 3. By the year 2010, those odds will increase to 1 in 2 people. Right now every person, adult and child alike, has a 30% chance of developing some form of cancer. In just three years we all will have a 50 /50 chance of getting cancer. This is very frightening, Hugh! For us it’s much worse…

The particular ALL Leukemia, which Adelaine was been diagnosed with, has a 98% cure rate. This cure rate sounds pretty peachy doesn’t it? Well, unfortunately this is not the end of the story, this number has been greatly candy coated. My heart sinks as I share this news, which we only found out a few days ago. The definition of this cure rate simply means that after treatment she has a 98% chance of not getting this same cancer over the next ten years. That only gets her to the age of 14, then what? Also, because of the chemotherapy treatments that she has received and will receive over the next 1 ½ years, she is about 20 times more likely to get a secondary cancer than someone that has never had cancer before. This leaves her with an 87% chance of developing a secondary cancer because of the treatments for this cancer. Chemo is not a cure for cancer but it does kill cancer cells, however, it also affects the good cells in the body. Chemo is also a known cancer-causing agent. Watching our child suffer has been more painful than we could ever put into words. I can not bear to think that after she beats this cancer, she has an 87% chance (based on the last 30 years of research) of having to go through all this again. Chances are slim to none that our family and yours have seen the end of this horrendous beast. We’re not going down with out a fight and we hope each of you will join us.

With Anissa’s permission I have copied this from Peyton’s website regarding a conversation that we had a few days ago…

Angela Powell and I had a long talk today about the reality of cancer. She was frustrated with the fact that the risk for secondary cancers is so high in pediatric leukemia patients. We talked about how the phrase “80% cure rate” is a lie. Cancer stinks and there is absolutely no way to pretty up. The phrase that I read all the time is that ALL leukemia is “the most common and most curable form of pediatric cancer”. That just means that the cure rates for other cancers reallllllllly stinks! She said “What’s the use of going through all this treatment if they’re just going to get cancer again anyway!” Oh do I understand her frustration and fear.

That 80% cure rate sounded so good following the words “Your child has cancer”. I held on to that with all my heart. 80% is good! 80% is doable! 80% is higher than most of the grades I got in math class throughout my school years and I still managed to graduate! We’ll take 80%!! Then I read and I get more information and I realized that 80% applies to kids who are between the ages of 2-10, who don’t get leukemia in their spinal fluid, who don’t have all the crazy qualifying genetic factors…and 80% is only good for a 10 year survival rate. That’s 80% who live 10 years past their diagnosis.

We’re finding out that because Peyton is a higher risk, she falls short of that 80%. Because of her spinal fluid being positive for leukemia at the time of diagnosis, she’s higher for the chance of relapse and secondary cancer. Because she has to have radiation on her brain and spine, she’s adding to that chance of secondary cancer and tumors.

When we were told there was an 80% cure rate for her type of cancer, I was joyous because I thought “Hey, we’ll cure it and then life can go back to normal”. I’m finding out that this is our normal. Life will never go back to what it was. She will never be the child she would have been without cancer. Her body will never be what it could have been. She may suffer growth issues, her pain could be temporary side effects of her medication, but it could also be permanent damage, she will always be at risk for cancers and have to be followed carefully throughout the rest of her life. Her mind won’t be what it could have been. She’ll probably loose a few IQ points, she may struggle at school with memory and cognitive issues, and she may have to work harder to do what other kids her age are doing naturally for the rest of her life.

Oh how we wish this wasn’t our story to share, but it is. It’s been 10 months now and I still can’t believe this has happened, even though we live it every single day. What can we do now, where do we go from here? We hope to share our story with other people so that this doesn’t become their story also. Doug and I are currently undergoing hours of research on how to PREVENT this. They may not know what causes cancer, but they do know exactly what it is and how it all starts. We are putting all our research together and plan to meet with some more doctors and professionals this week about it.

We have never shared what it is like to have chemotherapy drugs in our home. But by not sharing people won’t know the whole story, right?!! Some doctors and nurses are more relaxed than others about handling these potential cancer-causing agents. Some of this information, the doctors did go over with us, and some are from a pamphlet produced by the American Cancer Society that we discovered at All Children’s Hospital not long ago. I hope people reading this do not get the wrong idea. Cancer is most definitely NOT contagious. Being around a person with cancer poses no known risks, but when people are living together with someone undergoing chemotherapy, there are some necessary recommended precautions. They are….

Always wear gloves when handling chemo, (some doctors even recommend wearing a mask when cutting or crushing chemo that is in pill form). Keep all utensils, vials, medicine dispensers, ect. used to administer chemo, separate (do not cross contaminate). Always flush the toilet twice after a chemo patient has used it, and clean the toilet after every use. Wear gloves when changing diapers, and then double bag the diapers, taking care to tightly seal the bag. Always wear gloves when handling urine or waste. If bedding or clothing becomes soiled with urine, double wash these articles in hot water. Because most chemo stays in the system for about 48 hours, do not allow a patient to share a bed, as some chemo may be released through the pores as they sleep. Do not allow a chemo patient to take tub baths with others. (For Bowen’s birthday, he said he wanted to take a tub bath with Mason and Adelaine and play with all the tub toys like they used to. I scrubbed the tub and toys really well and Bowen got his wish). We were also told not to share food or drinks with Adelaine because of the germ issue, however, I’m sure we could get chemo exposure this way too.

Now let’s be practical. Do you really think we double flush the toilet every time she uses it? We honestly don’t wear gloves when we handle her chemo either, but we do always wash our hands immediately afterwards. We have to be practical plus, we love Adelaine and would never want to treat her like she has the plague, but we do have to be careful, if not for us then for Mason and Bowen’s sake. I do sometimes wonder just how much exposure we have to these cancer causing agents since they are in our home and are handled on a daily basis. Could it make our odds of getting cancer go up a little? Who knows! Let me just say this again. I HATE CANCER!

One of the posts we did a few months ago, we talked about how on September 5th 2008, we would spread our wings and fly far away from here. Now we feel that we will be flying straight into a mountain or something. What we desperately need now is continued healing and preventative prayer, and lots of it. Please pray for Peyton and her family too. Every day our precious Adelaine prays to God about cancer. Her prayer goes like this… “Dear God please help my, Mommy to feel better, my Daddy to feel better, my Mason to feel better, my Bowen to feel better (I guess she thinks we all feel sick too, and I guess we kind of do)! Please help them to never ever get cancer, and please help me to never ever have cancer again.” She prays this prayer every single day of her life. Oh how we wish she was still innocent and unknowing and uncaring about such things.

How did we not know all this much sooner? Doug claims that they probably told us when she was diagnosed. This could be, I mean really, after you’ve been told that your child has cancer, you really don’t hear anything else! Since we’ve found out the “real” statistics, it’s been difficult to sleep. Last night I dreamed that we were in a car and spotted a tornado. It chased us down. We tried to outrun it, but it eventually caught up with us. It lifted us and everything around clear off the ground, but amazingly, it placed us softly back down, as if nothing had happened! Now matter what we know that in the end God is with us and Adelaine will be healed. Thank you for your prayers.

To end on a good note, Mason turned seven on Friday, and we celebrated his birthday all weekend. While we were discovering that our lives will NEVER be the same, and that things weren’t what they seemed, we made ourselves shift gears to celebrate life, a precious birthday with our son. The whole family showed up at Mason’s school to surprise him, and we all had lunch together. Then on Friday night we went to the Crescent Lake Relay for Life in St. Petersburg. My friend Becky was working this one. The DJ announced Mason’s birthday and we all partied until well after dark. We had so much fun. As we did the walk at dark, a photo was taken of Doug holding Adelaine with her head on his shoulder, which was entered it into a contest, maybe we’ll win! Around 10:00 PM, we came home and put the children to bed, then I went back and camped out all night with Becky. We enjoyed our time together. I really want to reconnect with my girl friends, many seem to have drifted from all this. Saturday the guys went to the movie, “Meet the Robinson’s”, while Adelaine and I stayed home to rest. Doug said it was awesome (he wants to take the entire family to see it in 3-D). Today we went to the see the Tampa Bay Storms play Arena football with the Mayhew’s. The “six pack” had a blast as always. We scored box seats from the Children’s Cancer Center, and it was fantastic. Thank goodness for the Children’s Cancer Center. There perks really do give us amazing experiences together as a family and we will always have these fond memories

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This morning Bowen had red Jell-O, a red Popsicle and juice for breakfast, he said that it was the best breakfast he’d ever had! When the Tech came in to prep him before surgery, he asked Bowen if he knew what he was having done. Bowen lit up and said, “They are going to give me surgery!”, and then he said, “Today is my lucky day!” He didn’t know what surgery was exactly, but Mason had given it a go a couple of years before, and Adelaine sure gets fussed over when it’s her turn, so he knew he wanted in on some of the action.

At the hospital, Bowen got to ride in the stroller for once (Adelaine sat in his lap), and Bowen even got to drive the TV remote. He was loving it!! Also he got to have whatever he wanted for lunch (which happened to be a corndog and an extra large cherry Icee). I was really worried that it may say hello again, but this was Bowen’s luck day, right?!!!

Adelaine also was feeling pretty lucky. She got to play celebrity at the hospital AND not get any treatments. Miss Ashley, one of her favorite people got to have lunch with her, plus she even scored a present from one of the nurses. Bowen was like,”Hey today was supposed to be my special day”, so he and Mason scored gifts too!

Miss Ashley met us at the hospital to watch Adelaine, so I could go back to the holding room with Bowen. Our favorite anesthesiologist was there and he allowed me to suit up and go into the operating room. There is something so special about being there when my babies are put to sleep, it’s like that is what mothers are for. I held my little Bowen in my arms while he breathed in the sleepy medicine from the mask. I spoke words of comfort in his ear while he sleepily drifted into la la land. It was so intimate and special, I will never forget it. Then I made a mad dash down to the room to get Adelaine from Ashley, so she could go to work.

Right after surgery Miss. Pepper took Bowen into the recovery room. Pepper has become a dear friend and always gets Adelaine after all her procedures. After Bowen was fully awake, he came back to the room and proceeded to eat the meal of his dreams!!

Dr. Orobello came in and explained that he removed his adenoids, also there was so much fluid in his ears and that it was as thick as paste. He cleaned it all out and put tubes in. By the way, Bowen has never had one single ear infection in his life. I performed my own Angela Powell hearing test and he passed with flying colors!!! I tapped lightly on the bed and he heard it, I tapped on the table and he heard it too! I whispered and he heard every word, the whisper was so soft I couldn’t even hear it myself! All evening I’ve said, “Can you hear this”, “Can you hear that”? HE CAN LITERALLY HEAR A PIN DROP! It’s so amazing, its like we’ve witnessed a miracle!

They said in about a week (after the swelling goes down) the snoring should completely subside and he should start to slumber peacefully. With a little R&R, all Bowen’s symptoms should subside and he will be a new man with a clear head! So, now Bowen can hear once again, he can already breathe better, and his corndog and his Icee did not pay us a second visit. He had a little Codeine, got to open a present, and then played the Nintendo all evening; I suppose Bowen was right, today was his lucky day!

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Yesterday afternoon Adelaine was released from the hospital. Her blood work came back negative, meaning that she isn’t going to need monthly blood therapy from donors. Apparently she must have had a virus or something. While she was in the hospital her blood levels continued to drop, leaving her in need of an infusion. After she received blood on Friday her head and eye pain subsided. Apparently severe anemia can cause such symptoms. Now her ANC level is depleted down to 500, we are hoping that by Wednesday they will go up enough to begin chemotherapy again, as the doctor put a hold on them during her hospital stay. Thank you so much for the prayers, they have really worked!

WE HAVE ANOTHER PRAYER REQUEST ABOUT BOWEN. Before when I mentioned Bowen I was rather vague, but things have escalated and I would like to share more so that everyone can pray specifically and possible offer some feedback…

As you all know Bowen is having surgery to have his adenoids removed on Tuesday. He has developed sleep apnea over the past six months or so. (Mason did the same thing when he was Bowen’s age and after his surgery all his problems subsided). Anyway, when Bowen sleeps he snores like an old man, and we know he definitely doesn’t sleep well. In addition, he has some bladder problems, to be more specific, burning and frequent urination. However, the test came back negative for an Urinary Track Infection. He has had several accidents in his car seat, ect., when he falls asleep. We are hoping that this is because he is so sleep deprived that he is sleeping too deeply to wake up.

Even more concerning, he has lost much of his hearing. Two weeks ago we were at the ENT, and he did have some fluid in his ears, but nothing to be concerned about. But, we noticed when we got home yesterday he seriously can’t hear us unless we are practically shouting. We would stand behind him and ask him things like, “Do you want to have chocolate for dinner”, and nothing. Bowen seriously can’t hear and this is so scary for us. Tomorrow I am going to see if the ENT can work us in. We will sit at that office all day if we have too.

Another thing we’ve noticed is that he is having trouble focusing. It’s like he’s in a daze or something. Now this has just started happening the last few days. I hope that when all these things are put together it doesn’t equal something serious. Please pray that this will all be eliminated after his surgery and is all linked to his adenoids. Thanks and God bless!

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We have had many “angels” come into our lives in every different way imaginable, especially since Adelaine was diagnosed. While we would like to recognize everyone, we do not have enough time in the day. Following are 3 angels that have especially touched Adelaine in personal ways that she speaks of them daily. Please do not feel offened if you are not one of the 3. We could not do this if we did not have the support directly from you.

Some say that God brings the right people into your life at just the right time, I agree wholeheartedly. We have had so many kind-hearted people reach out to us. Some we knew, and some we’ve met and gotten to know since her diagnosis, all of which we hold very dear to our hearts. The love and support we’ve received has been overwhelming. There are many angels God has brought into our lives. There are three adults that have really become the apple of Adelaine’s eye. It is an honor to share about these three people that have brought Adelaine so much joy, and have touched our lives in a very special way…

“Miss Ashley”
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God brought us “Miss Ashley”, who we met at our church. She is a 19 year old college freshman, and had an instant connection with our three children. On December 1st we had a Christmas party to go to and asked her to baby-sit. Prior to Ashley we only had someone baby-sit our children twice, and that was before Adelaine was even born. The children had so much fun with her that kept asking when she could come back! She played Uno with the boys, and played dress-up with Adelaine, they put together puzzles and had sooo much fun, and afterwards they even cleaned everything up! Wow, freedom we’ve never felt before. We could go out, had someone that we could trust, and not have to feel guilty. I know, I know this supposed to be about Adelaine’s angels…

Ashley is really passionate about Adelaine. She comes over to our house just to visit and play with her. When we’re in the hospital she always comes to visit, sometimes she just sits with her while she sleeps. She sometimes spoils Adelaine and her guys with gifts, and she even wrote her term paper about Adelaine’s leukemia (she got an “A” by the way). The day Adelaine got out of the hospital, Ashley took her to the Build- A-Bear workshop in Tampa for her birthday. To top it all off she insisted on buying Adelaine’s Easter dress for her, complete with all the accessories. Isn’t our Ashley truly angelic? I always tell her we are going to add a room onto our house so she can live with us!

Next is “Miss Dee”
“Miss Dee” came into our lives after Adelaine was diagnosed with Leukemia. She has a company which provides care for the elderly. I had heard about it through a friend, so I called her looking for a job as a part-time evening/ overnight caregiver. She read over my resume and decided that I was perfect for her Administrative Assistant position. I reminded her of our situation and she assured me that Adelaine could tag along to the office which was out of her home, and I would also be able to work from our home too. I have been working for Dee since October and it has been great. She is flexible and understanding, she knows that my life is like I’m running in slow motion! She also makes the most delicious meals and cooks in large quantities and sends some home to her children and to us! She always offers to help out with the boys when Adelaine is in the hospital. She sits with Adelaine at the hospital if I need to take a shower or run an errand. Recently she took the boys to a dinosaur exhibit so I could bring Adelaine home from the hospital and get her settled in! I know, I know this is supposed to be about Adelaine’s angels…

Miss Dee is a wonderful grandma, or “Nanna”, as her grandchildren call her, and has adopted Adelaine as one of her own. She visits Adelaine when she is in the hospital and always calls to check on her. When we’re at Miss Dee’s, she watches movies with Adelaine, plays with her, and they even make chocolate chip cookies together! Adelaine always asks, “When can we go to Miss Dee’s”? When she sees Dee she just lights up, oh and she really loves Miss Dee’s spegetti. I always tell Dee that if she just sends dinner home with us occasionally, I’d work for free!!! But honestly, it hardly seems fair that she pays me at all! She spends quality time with my daughter and really loves her, and that isn’t worth any amount of money. Knowing Dee is here in this world, making a difference is like a payment in itself. I can’t think of a better role model for my daughter. Dee is honest, kind and takes her job very seriously. She gives everything she does 100% and with great passion. Adelaine is is just crazy about her, and so blessed to have Dee in her life, and so am I!

And finally “Miss Sara”
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Miss Sara is the most recent angel to enter Adelaine’s world! We discovered Miss Sara at Adelaine’s pretend school about a month ago. Pretend school is actually the Children’s Cancer Center (see our previous post). Anyway, you may be wondering how “Miss Sara” made the cut so suddenly. We’ll I don’t know exactly what all goes on while us moms are gabbing away in the next room, but it must be pretty special!

I do know that on our very first visit we were late, (Anissa was supposed to answer her phone after we crossed the bridge into Tampa to give me directions the rest of the way, but she apparently got caught up in conversation and forgot to turn her cell phone on). The following week I sat down and gabbed for what felt like 5 minutes and looked down at the time and realized that if I left that very second I would be at least 25 minutes late picking up Bowen from school. Let’s just say I can see how it happened!!!! Thanks Kristin for getting Bowen for me that day! (Kristin is one of Angela’s Angels for sure).

Anyway back to Miss Sara, because we were late, Adelaine missed the Easter egg hunt, so Miss Sara hid eggs all throughout the playroom and Adelaine had her own private hunt! Also, on that first day Miss Sara held Adelaine up to the glass window whenever she wanted to, so she could see into the room where her mommy was. Adelaine has a blast painting and playing with Miss Sara. She talks about Miss Sara all the time. Boy Miss Sara really won her over. When we get to pretend school, the first thing Adelaine does is look the room over until she sees her, then she wants to run up to her and give her a hug and talk to her about all sorts of things. Last week Miss Sara wasn’t there, and Adelaine was very disappointed. We prayed and prayed for her to get better. It’s the delight in Adelaine’s eyes when she sees Miss Sara, and the sorrow that she felt when Miss Sara wasn’t there that lets us ALL know that Miss Sara is quite special to Adelaine, and quite special to us too!

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Almost a month ago we changed Adelaine’s clinic day so we could start going to the Children’s Cancer Center in Tampa, which has a playgroup for Adelaine. The first time we went, it was like we had been in a foreign country and walked into the American Embassy, the feeling of home sweet home was almost overwhelming! Everyone welcomed us with open arms. The entire place was child-friendly with vivid colors, cheerful and warm. There’s something so special about being among a group of children who are surviving cancer. I suppose many angels must constantly flock around them, protecting them. Knowing that they’ve been through so much, it’s an honor to see their faces and hear their names. Meeting each child was like meeting the President of the United States or something. To meet their parents was like meeting war survivors from the front lines. On Tuesday mornings, Adelaine and I go to the center for her playgroup, and all us moms sit in a room and talk about whatever comes up.

After our first visit, while I was putting Adelaine down for a nap I asked her how she liked her new school. Bowen came in with his feather all ruffled asking,” Did I hear you say that Adelaine went to school?” After all, Bowen had to have four whole years under his belt before he was big enough to go to school! I explained that it wasn’t a “real” school, because I didn’t actually leave the building with her there. So he said, “So it was a pretend school, and I said, “Exactly”. From that point on Adelaine has always referred to the Children’s Cancer Center as her “pretend school”.

Adelaine loves her new pretend school, and on Thursday evenings twice a month, all our guys get to join us. We all love Adelaine’s pretend school as much as she does! It has already brought so much healing and comfort to us. I know we are all building friendships that will last a lifetime. In fact, I ran into Brandy, one of the moms yesterday here at the hospital. She came up for a visit while her son, Noah, was having some scans done. We had such a great visit, it was like I‘ve known her my entire life!

The logo of the Children’s Cancer Center is a kite, and their motto is “…because children should fly kites, not fight cancer”. I love it!!! While we were there last week, I noticed one of the moms sitting across from me was wearing an eye catching necklace with a beautiful kite charm on it. Then I noticed another mom with one on, then another. Anissa and I were like, “Hey where can we get a kite necklace?” Maryann who’s in charge gave Anissa two last night. Of course I’d rather not be eligible for one, but I am so thankful to be Adelaine’s mom, I wouldn’t change being her mom for anything in the world, and it will be an honor to have Anissa place on of those necklaces around my neck!

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