Archive for June, 2007


We tried to make this week an exciting one for the children, before Adelaine’s big treatment. They all have had some great experiences so far. Tomorrow, a friend from Bowen’s school, Liam is coming over to play with the boys. On Sunday, Adelaine’s friend Ella came over from church and spent the day with us. She and Adelaine had so much fun. We had a tea party, played dress up, had a dance party and so much more. Bowen did feel confident enough in his manhood to join us as we sipped tea from fine china. However, he did find it necessary to come to the table dressed as a knight!

On Monday the children and I never left the house. The old Angela always had a project of some kind going on at home. Over the past few weeks, I’ve been cleaning out closets and rearranging furniture. It’s good to be back! Anyway, Adelaine’s room has been given a face lift, and now she has organization in her little world of make believe. We all spent part of the day organizing and playing with our once lost, newly found treasures. The children especially enjoyed me sitting on the floor and playing with them for hours on end, and I did too.

On Tuesday morning we went over to see our friends, the Bohlander’s. Kristen and I had a nice time visiting while the children all played together in their pool. Kristen saw Adelaine regularly at Bowen’s school and often gave him a ride, so she was there to see Adelaine nearly every day over this past year. It was therapeutic for me to hear her talk about all those days that I carried her to and from the car. And then we’d look over at her jumping, swimming and playing like a typical healthy three year old (with absolutely no fear of the water)! We both were amazed at how well she’s feeling, and how much energy she has.

Ok, get ready its brag time for mom…

Tuesday afternoon Mason had his evaluation for the gifted program. He fell in the 99.62nd percentile! The RAIS score range is: 110 to 119 – Above Average, 120 to129 – Moderately Above Average, 130 and above – Significantly Above Average! Our little smarty pants scored a 140, so we now have in writing that our Mason is Significantly Above Average, but we already knew that!!! Reviewing his score with the psychologist was the best! It’s always fun to hear other people tell you how great your children are, right? One of the questions he missed was: Bla is to Bla, as Conductor is to ______. Mason said Orchestra, but the correct answer was train! A brilliant answer, I thought! To celebrate his success we all had Mason’s favorite ice cream, Mint Chocolate Chip!!! Be forewarned, Bowen is being tested this summer too!

Now for our Wednesday with Doc…

Yesterday we arrived at the clinic around 9:30am and ended our day at the hospital around 4:30pm. In the car on the way there, Adelaine discussed with me that she wanted a sticky pricky (a finger prick to test her CBC), instead of having her port accessed! Much to her disappointment, they walked us into a private room, cluing her in as to what fate would unfold! Yes, the private room meant that a needle was inevitably going to pierce her chest and make her cry. Bowen distracted her by planning an escape route through the window, two stories high! He even had a plan as to what they’d do next, after they got the window open. Bowen would have scored very high on the Verbal Intelligence Index (VIX) portion of Mason’s gifted testing, Hugh! Anyway, she watched intently as he tried to get the window to open. I pretended to go right along with it. After all, whose side am I on, anyway? Incase anyone’s ever wondered why the windows at doctor’s offices and hospitals don’t open, well, with out a doudt, there are some patients at sometime or another who would make an escape attempt. Even if the only logical way down would have to involve a certain super hero such as Spider Man!

After lots of screaming and tears, her port was accessed and blood was drawn. Her counts came back really good, with an ANC of 2000, so she was good to get all her doses of chemo. Around 11:00 we headed over to the hospital. The next three hours were stressful and miserable because Adelaine was starving. Our 12:45 scheduled procedure was pushed back until 2:00. I spent over an hour in holding with Adelaine. Thank goodness Ashley came to be with the boys while they waited in Adelaine’s private room. She was such a blessing. She brought games to play, and they were delighted to see her. I knew she would come so I didn’t have to worry at all about the guys!

Except for the starving, and the delay,everything went well that afternoon. All the nurses at Short Stay know and love Adelaine. They all stopped in to say, “Hello”. Miss Pepper came in to see us to let us know that she’d be waiting for Adelaine after her procedure. Adelaine loves Miss Pepper, knowing that my baby will be delivered directly to her and will wake up to her familiar face is so comforting.

Once again, I suited up and went with Adelaine into the OR. She was very hungry and understandable irritable. As always she cried that she didn’t want to “breathe”, which means she didn’t want to wear the mask to be put under! She insisted on “the milk”, which is a milky white colored medicine that the doctor pushes through her port to put her to sleep. The milk works incredibly fast, in fact, with her mouth opened in protest, during her very first cry sitting on the table, she passed out cold. I sat in front of her and held her up as she instantly melted away. It really works like turning off a light switch. After all these times, I’m still amazed by it.

Next I sprinted down the hall to check on the boys, hoping that Ashley had arrived. Of course there she was playing a game of Operation Shrek (Ashley’s just awesome that way), with a full and happy Mason and Bowen! Good thing they weren’t playing Operation Pincess Cinderella, or I would have been a little freaked out!! Next, I went down stairs to unwind and ordered a bowl of chocolate frozen yogurt. It was then that I began to realize that the worst part of the day was clearly behind us now! Eating chocolate has a special affect on a woman’s brain, and creates positive thoughts and meditations, I felt like I was having a mini celebration or something. It was good, really good!

More VIP treatment followed as the nurse agreed to enter Adelaine into the hospital system so I could order her room service. As we were going into the OR she begged for some of her favorite food, (which can only be prepared by the All Children’s inside chef). Unfortunately the food wasn’t ready before Pepper brought her in, but she was thrilled to see Miss Ashley, and to be reunited with her family. She really enjoyed her cheese pizza, blue Jell-O, blue Icee, shredded cheese and raisons, once they arrived! Of course Miss Pepper had already given her a popsicle. The nurses and doctors at Short Stay are incredible, and I feel good about the care Adelaine gets while she is there. The anesthesiologists, even the nurses just walking down the hall, the people in holding and in recovery each are incredible and have so much compassion and love for the children. It feels like from the time we arrive, until the time we leave, we are carried through the entire process on wings of angels. God bless the skill and compassion each one of these special people possesses. I can only imagine how horrible the experience could be if they became calloused and their jobs mundane.

Yesterday evening when we got home, Adelaine did great. This evening, as the poisons work their way into her system, she is really starting to feel it. Because she has grown, and gained weight, the doctors have increased all the dosages of her medications, including those she got yesterday. The steroids and chemo are stronger than ever. Already she isn’t sleeping and has become quite pale. Her beautiful summer tan has gone away and her skin is turning pale and white. Hopefully by tomorrow she will start feeling better again. It would be interesting to get a reading on her ANC now, I’m sure it has dropped. She is really starting to look and feel the part of an oncology patient again. Here’s to Mona Vie, I’m hoping that it’s going to help her keep that beautiful hair that’s been growing in, and get her back on her feet soon!

Angela

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Today Adelaine had her visit at the clinic. Her ANC was at 900, not great, but not too bad and good enough to carry on as usual! This Wednesday, her “every third month” protocol will have rolled around. I’m slowly getting my act together so hopefully in three more months this date won’t come as such a surprise. So, along with having Vinchristine (Chemo) injected into her blood stream via her port, and beginning five days of steroids, she will also spend the day at All Children’s Hospital being put to sleep and having Methotrexate (Chemo) injected into her spine. The procedure is scheduled at 12:45, which means that she will spend half the day starving, (she can’t eat or drink past midnight the night before). Please remember her in your prayers. Having her put to sleep always involves some risk, not to mention inserting a needle into her spine, not to mention all the poisons going into her system. You get the picture!!!!!!

Life can be so unfair. I didn’t realize until Adelaine was diagnosed with Leukemia, but often time’s children with Down’s syndrome are diagnosed with Leukemia also. Such was the case for a little girl we met at the Clinic today. While we were in the waiting room, in came this mother and daughter. The little girl looked to be about 2 ½ or maybe a little older. She was crying and seemed very upset. In fact, her mother carried her over to the trash can where she begins throwing up profusely. My first reaction was that I had to get Adelaine out of there before she catches something awful. Jen, one of Adelaine’s nurses explained that the little girl begins throwing up at the sight of THEM!!! My heart was ripped apart as I thought about that poor little girl. She probably isn’t able to begin to understand why in the world her mother brings her to this place week after week, so these horrible people can invade her space, force her to do things that she doesn’t want to do, and finally torture her with needles! What about her poor mother, subjecting her daughter to all this, hoping that it is for her own good? What helplessness she must feel, what guilt she must carry, what stress she must be under. The saddest part is that this is not an isolated case. We have met family after family caring this same burden.

People believe that Pediatric Cancer is rare, but really, it’s not that unusual. 1 in 650 children are diagnosed with cancer each year. These figures are not decreasing either. Please remember all these families. Many cities, even large ones, do not have a place like the Children’s Cancer Center where families going through similar situations can meet with one another, support each other, and have a place to come to where they can receive the support they need to cope. The Children’s Cancer Center here in Tampa has made such an impact on our lives. In fact, we are on our way out the door now to go eat dinner there tonight! It truly is the highlight of Adelaine’s week, and ours. Focusing on all the positives, we live five miles from All Children’s Hospital, we have the Children’s Cancer Center close by, Doug has really good medical insurance, and Adelaine is able to understand and cope with her cancer diagnosis (with typical three year old limitations, of course)!

Angela

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Adelaine is still feeling great. In fact, people have a hard time believing that she is undergoing chemotherapy at all. She is extremely energetic and can keep up with her guys no doubt! The past two Sunday’s she has gone to her Sunday School class and has never been so happy (except maybe at pretend school, we think it’s a toss-up)! There is a little girl named Ella, in her class who is the exact same age. They share the same birthday, and one Sunday, not too long ago, they both had on the same dress. I guess now you could say that they have bonded for life!!!

Last week her counts were at 1,000. Not too bad, but not good enough for her to go two weeks with out another clinical visit. Tomorrow we will go in for a CBC, and next Thursday she gets Vincristine and starts five days of steroids again. We are still going to “pretend school” on Tuesday mornings, and tomorrow night we will all go for their twice monthly dinner and group meeting. Adelaine and the boys love it there so much. It is truly a blessing.

Now that Adelaine has been consistently feeling good and staying out of the hospital, I feel like we are starting to get our lives back in order, somewhat! I’ve had time to sit down at the computer and read all the different emails and messages left for us. Some were in Doug’s email and I was reading those for the first time. Some I know I had read before, but it was like I was reading them for the first time again. All I can say is WOW, THANK YOU! I have never cried so many tears as I have this week. I have wept over the love everyone has poured onto us, I have wept through what all our family has endured and I have wept over the mercy God has shown us. I guess I’m starting to finally come back to life again.

For about 10 months we were on auto-pilot just trying to get through each moment. We really had to stuff our emotions inside as we operated in “crises mode”. I must admit I am having a hard time functioning now that things are better. Once you’ve been on crises mode, it’s hard to remember how to act once things slow down again. I know that must sound weird. The best way for me to describe it, was like I was “tunneling”. Everything around me went dark and all I had was a small flashlight which allowed me to see only the things that were right in front of my face. I was trapped in a deep dark tunnel, trying to cope while I found my way out. I took care of those things that I could see with my tiny little flashlight, and everything else had to be forgotten for a time. Although we are not out of the tunnel yet, I am begining to see some light.

Our focus was on Adelaine of course, and our boys. Being in and out of the hospital certainly helped keep us running at all directions. Once we would come home, by that point we were mentally and physically exhausted, but then we had to really focus on the boys and getting the house back in order. I have prayed many prayers and tried so hard to ensure that Mason and Bowen didn’t feel pushed aside. I know beyond any doubt that they feel very much a part of all this and very loved, that in itself has been a full time job, but one I wouldn’t trade for anything in the world. After about a week or two, it was back to the hospital with yet another illness, which brought with it more ups and downs as we waited to see what would unfold. All the while, people were extending more grace and love than we could have ever hoped for. All the prayers did keep us going and did keep Adelaine alive. I believe that with all my heart. I just want to thank each and every one of you for the love and support.

Adelaine has grown up so much since her diagnosis. She went from a toddler to a little girl. It breaks my heart to think of how much life was taken from her during those months in bed, but I am equally amazed at how see seems as if she’d never missed a beat. She is as intelligent, witty and beautiful as I could have ever dreamed my daughter to be.

Recently, Adelaine crawled into bed with me, and I took that opportunity to talk with her about all she’s been through. It was unbelievable, her ability to understand and recap theses month’s events. Keep in mind that we have tried to be very honest with all three children about Adelaine’s illness. We tried to answer each of their questions and concerns. We kept them as enlightened as possible, without giving them all the traumatizing details!

Adelaine remembers being too sick to play with her toys. She remembers being in the hospital, too sick to get out of bed. She remembers so much. I know that some of this will be forgotten, but I hope that she does remember some of it, because it is part of her life and a part of who she is. I asked her questions, and here’s what she had to say about it how she beat cancer…

“I had cancer. Jesus didn’t give it to me, Satan made me sick, very sick”. I almost died but I was strong, Jesus made me strong”. “I beat him (Satan) up, I punched him in the neck, and hit him in the head, and I punched him in the toe, and I kicked Satan in the booty”. “I hit him in the eye, and on the ear, and on the back”!!! She just laughed and laughed as she told the story of how she conquered Satan! Our otherwise soft, meek princess turned out to have what it takes to be a Princess Warrior when it counted.

There is no doubt that if the curtain was pulled back to things unseen we would have witnessed Jesus, many Angels and Adelaine all kicking Satan’s booty! Prayers were lifted, cries of mercy and healing poured out from Heaven. Jesus heard and answered. We are so thankful! Thank you for praying for her and loving her. It took more than what we could have done alone. Please continue to pray, we still have 15 months and 14 days (and counting) to go! There are still many potential hurdles. Many more chemo pills to swallow, many more spinal injections, port accesses, steriods to take, hospital stays to come, antibiotics to consume, tests to be run, and prayers to be prayed.

God bless,
Angela

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Bowling with Brad


Let me clarify Doug’s post in the rare event that Brad actually reads our blog! I can’t let it go down in history that all I did was drool. Now, Ashley on the other hand, she was a different story (sorry Ashley, but it’s the truth)! As for me I had lots to say. We talked about the weather in Canada, if he were a good bowler, if he was interested in our babysitter, Ashley. Ok, maybe not the last one. Was Brad hot? Let’s be honest, Brad is hot, but for me in a “I’m really glad for you sort of way”! Doug is my little hottie, I love you baby!!!!!

Angela

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June 11, 2007 Brad Richards hosted his End of the Year Rascal Wrap Up Party. This year the party was at Pinchasers Bowling Alley in Tampa. He had at least 30 lanes for the kids and their families as well as food, sodas and cake.

Of course we got there late (Anissa, that’s how we roll) so we got the last lane. Being in the last lane has its perks as we were the last group that Brad spent time with. He started on the other end and worked his way down spending time with each family talking and taking pictures. He looked pretty tired by the time he got to us. No, he didn’t bowl on each lane. I don’t think his arm would have lasted and he has a successful hockey career to look after.

I had my list of talking points to cover with him:
Thanks for all you do
Lobster Fishing with his dad
His Annual Golf Tournament
The Sopranos Ending
Does he like Journey as much as Vinny and Marty?

I talked to him about all except the last 2. Good thing I had talking points, because Angela and Ashley just kind of sat there, stared, and drooled a little bit. I’m not afraid to admit it, he is a good looking unmarried guy. He is a premiere athlete earning who earned the second highest amount of money of all the players in the NHL last year. He also has a catered suite at the St Pete Times Forum for sick kids and their families for all the Lightning hockey games and many of the other events. When he is with the kids his eyes light up and he focuses on them. Not too shabby.

Kasey Dowd is the Director of Richey’s Rascals. She is an energetic bubbly young lady with a job that has to be extremely fun. Working with Brad, hosting the families at the Hockey Games and coordinating all the other activities. Thanks Kasey!

Thanks to everyone who made this possible. Thanks to Mary Ann @ The Children’s Cancer Center for inviting us and putting up with our crazy family lives. We have many people that have helped us out and gone above and beyond during the past 11 1/2 months of struggle. We thank you all. To us you are all on the same level as Brad Richards, you just can’t skate as well.

Dug

P.S. We will have the pictures up shortly…

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Adelaine now has the energy of that of a typical 3 year old, which actually exceeds that of her two older brothers!!! Our family is in awe over her seemingly boundless energy. She recently created an outlet in order to release it all. Imagine that, our baby once near dying now feels grrrreat and has so much energy she had to invent a way to release it all! She does a little hip hop dance while singing Skit Scat Scooby Do, Skit Scat Scooby Do! Thinking back on all those miserably gloomy months of her lying in bed hardly able to move, it’s like we have a brand new person in the house. Over these past few months she’s kept improving and now she’s just over the top, literally spilling over with energy. Our little girl who has been lost for almost a year has returned and we couldn’t be more ecstatic!!!!!!!! Today was the absolute best she’s felt since last July! In fact, we even let her go into her Sunday School class today, she was so excited. At nap time, she just played and played in her bed, unable to fall asleep. The steroids she finished last week have completely worn off and she is soooo sweet. She kisses all of us and just couldn’t be more loving. WOW!

Looking back at where we’ve been is vital because I know we can use our story to help so many other people. All things work together for good, and by sharing there will be so much good come out of it. I really want as much good as possible to come out of our Adelaine’s having to suffer so. Here’s our story, please read on…

Within days of being diagnosed, the Dr’s no longer found any trace of cancer in Adelaine’s body, but the current course of action is taking various medicines including chemotherapy for 2 1/2 years. We have to give her potentially cancer causing agents in order to be assured that the Leukemia doesn’t come back in the short term. All these medicines have had a variety of side effects. Of course the loss of her beautiful golden blonde hair is the most obvious, but probably the most heart wrenching has been the loss of energy. Our little bundle of sunshine had turned into a gloomy, grumpy, tired little girl.

Saying it is bad enough, but living it was unimaginable. As her mother, I have never been so depressed. Buying a bed to put in our living room for her was when I really began to come to terms with the controlling grip this curse has had on her body! The flu lasts only a week or two, but Leukemia treatments would last for 2 ½ years. With the flu, we camp out on the tile floor for a few and get through it. When I thought about the past eight months, I would break down at the thought of having yet another almost two more years to go. The fear and despair I felt was overwhelming. I prayed that God would just come and take us all so we wouldn’t have to continue on.

After 8 months of watching our baby struggle to smile, or even get out of bed, we were so thankful that she was still with us but were feeling quite defeated. We were on the front lines, still alive but getting an awful beating. What happened next was absolutely life changing for our family. I can’t wait to share…

A very good friend came over to visit, Fred Boisvert. He had with him a gift for Adelaine. It turned out, the gift was really from God, and Fred was just the messenger. He gave us two bottles of juice called, MonaVie. You know how sometimes you should think it but not say it, well, here’s what I was really thinking… “We feel hopeless and just want to hurry through the two years, taking one miserable day at the time. Like juice is going to help us now, give me a break. I read the literature, which is pretty convincing, but come on we’re dealing head to head with cancer here. I am sure that this stuff really has helped other people, but it’s too late for Adelaine she is too far into this for it to help her now”.

We knew God would get us through, but the journey was a dreaded one. We were so beaten by Adelaine’s illness that this gift sat untouched in our refrigerator for a few weeks. Who knew God was trying to give us something that could really turn things around for her? After all Fred was a man of God and lived one of the healthiest lifestyles of anyone we’ve ever met. There is no one I can thank of more credible and honest than Fred, but I just simply dismissed his suggestion, Doug did to. I guess in this instance, not to take the fruit was the sin!!!

Who knew that our answers were right within our reach? After much persistence on Fred’s part and a lack of other juice to mix Adelaine’s crushed chemo pill, we mixed Adelaine’s chemo with about 3 ounces of MonaVie. Fred and his wife Jen prayed so hard that we would open our eyes to the literature they’d given us and open that bottle of Mona Vie. Finally, we did!

The next day Adelaine had a great day in the energy department. Coincidence? Maybe. After the third day of smiles and energy, we realized something was significantly different. Day 7, Doug called Fred and asked him to come tell us more about MonaVie. We learned about the Acai berry, organically grown in the Amazon Rain Forest, and its amazing health-promoting properties used to treat numerous ailments. For the past four months, Adelaine has never missed a day of her “Moby”! In fact, our entire family has not missed a day. Now I am ready to shout it from the rooftop! Since then we’ve done numerous hours of research and have met with Nutritionists and Chemists and Pharmacists. We’ve met with people who have taken it for years as well as people who have just recently started taking it. Their testimonies have blown us away. We’ve met other cancer survivors, diabetics, people with Arthritis, Eczema, Migraines, back pain, sciatic nerve pain, and the list goes on and on. The University of Florida did a study in 2006 on the Acia berry; one of the first to investigate the fruit’s purported benefits. The study showed that the Acai extract killed up to 86% of Leukemia cells tested! Taking our health for granted came to a screeching halt on July 1st 2006. But exactly how to take back what was taken from us was simply a mystery. We can’t go back and change our past, all we can do is “keep moving forward”. For us we will continue on our journey of being pro-active with our health. It is empowering to take control and make conscious, educated decisions about how we treat our bodies.

Her Oncology group was asked about taking Mona Vie, and they said,” As long as it’s just juice, it should be fine”. Since Adelaine started on Mona Vie a few months ago, not only does she have her energy back, but she is completely potty trained, her hair is growing back, its not just hair, but it’s thick, gorgeous and healthy. Her coloring is beautiful; she no longer looks ghostly white with dark circles under her eyes. She no longer stutters when she speaks, she doesn’t complain of all over aches and pains, and her nausea has completely subsided. She no longer takes laxatives or antacids. She doesn’t get mouth sores anymore. She’s happy, she sings and skips and makes gigantic messes with her toys! She’s sweet, loving, talkative, and full of expression. She’s eating healthier, and she’s finally on a schedule, (except of course during the five days a month steroid treatment). She has her life back, and we have our Adelaine back!

Angela

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