Archive for June, 2008


So, how are Adelaine’s counts? I guess we’ll find out tomorrow! One month ago was our big scare. Then, two visits later, while her counts were still on the upward climb, we were given the go ahead to fly solo for two weeks. Doug has done great taking her to clinical visits this past month. I had a hard time before, but now, lets just say its great having Doug step in! He seems to enjoy having those moments with Adelaine where she really needs his support. Praise God for that! Tomorrow, however, is more than just a finger poke, so it will be quite different than my kissing them both and sending them on their way!

But let’s back up a minute, to add insult to injury, or as we Floridians might say, “A little more sand in the bathing suit”, I had a very difficult time on Monday with the clinic. When Doug was last there with Adelaine for her visit, he called me and asked on what day we should schedule her I.T. (spinal injection of chemo) at All Children’s . We had them schedule it for Thursday and Doug made the clinical appointment for that morning. Well the nurse from the clinic called and said there was no availability in the OR on Thursday, so she scheduled it for Friday at 12:30. The nurse knows that Adelaine (and her mommy) prefer not to do the procedures on Fridays because Miss Pepper is off on that day, and we like to have her there with Adelaine when she first wakes up in recovery. Plus, 12:30 pm puts her way past lunch time and Adelaine will be starving. I always ask them to please make it as early as possible.

Anyway when All Children’s Hospital Short Stay Unit called to preregister Adelaine (they do this routinely before every procedure), I asked if there was any availability on Thursday. Guess what? There was an opening at 11:00 am. She told me to call over to the clinic and have them schedule it. So I called and guess what I was told. “No.” “It has been an office policy for over two years now to never schedule an I.T. before 12:00 noon”. I couldn’t believe what I was hearing. I have since requested from Short Stay the records of our procedure scheduling. It’s just one thing after another…

“Who cares if Pepper doesn’t work on Fridays, and having her there brings so much comfort to Adelaine”? “Who cares if Adelaine has to starve all day because she isn’t allowed to eat past midnight the night before her procedure, and then we schedule it later than really necessary”? “Who cares if we give Adelaine someone elses blood and she didn’t technically need it”? “Who cares if we scare the daylights out of Adelaine’s family by assuming a relapse”? “Who cares if all the nice people that read Adelaine’s website have to be subjected to Angela’s vent sessions”? “Who cares”? … “Who cares”? … “Who cares”? If young children get treated this way, I really can’t imagine how some of the elderly are treated. I think I have just been inspired to become a nurse. Oh yes, I’m serious.

Thankfully I have gotten to know the director of the hospital and she got it all worked out. Adelaine ‘s appointment is for 11:00 tomorrow morning, so hopefully she will be fully revived, healthy and happily eating her lunch by noon! Doug will be taking Adelaine to the clinic in the morning and I will meet them at the hospital for the procedure. Please pray that everything goes smoothly tomorrow. Specifically that nothing goes wrong with anesthesia, that nothing goes wrong with the procedure itself, that she doesn’t contract anything from the hospital, and that her counts are stable. After this, only one more I.T. in three months, then she will be done. The only other surgery after that will be having her port removed! With everything that could potentially go wrong it is such a miracle when these children make it through treatment. We are so close now, please keep praying us through this. We need you!

Angela

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It’s 1:00am and I couldn’t sleep. Two nights ago I ran out of GOOT for Adelaine. I’ve searched in all the little places around the house that I may have put the recipe, but I have continued to come up empty-handed. So I logged onto Doug’s laptop to try and find it. Well, here it is. I thought I’d share it with everyone out there who may be interested in this wonderful cure! Here’s a tip though, if your child has ear tubes which are surgically implanted, do not put GOOT directly into the ears, trust me on this. No, it doesn’t burn at first, it starts burning after you’ve had time to do BOTH ears, then your child will start to scream, “Fire”, unless your child has an increased vocabulary which includes any sorts of curse words and profanity, and trust me, these choice words would be very understandable!!!! (Even though Adelaine only yelled out “fire”, it still was not one of my proudest moments as a mom)!

Adelaine has done remarkably well since we started her on this salve. Her cough is COMPLETELY gone. I give equal credit to the Oreganol we rub on her chest. I just didn’t want to go another night without using the GOOT. It’s been wonderful having her head ALL cleared from the infection and stuffiness.

Well, here it is… Thank you to this wonderful mother of 8 for having this information available for all of us!
http://dixonhomestead.com/Jacque/?p=28

Angela

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We still haven’t replaced our home computer, so I am making do with Doug’s lap top when it’s available. First things first, Adelaine is doing well. We’ve had fun swimming and meeting new people at the pool. I know that swimming in all that chlorine isn’t good for her, (I’ve done the research) but we are going to be traveling very soon, so it will slow down! She jumps off the diving board and swims like a fish, it’s amazing to watch, especially since she’s never had a swimming lesson in her life! I won’t be encouraging her to join the swim team, but she really is a natural. We have friends that have a salt water, in-ground pool, which I feel MUCH better about, but with this pool we can use it whenever we want and won’t be wearing out our welcome!!!!

My current project is getting the boys new mattresses for their bunk beds. Last week I stripped the beds down to the bare mattresses. After looking under the egg crate pads, which were inside a zippered plastic cover (which is way too hot to sleep on here in Florida), which prompted the next few layers of, a cloth-like, dust mite proof, water- resistant cover, topped with a soft, extra padded cotton cover and finally a tee-shirt sheet, I discovered that both their mattresses had no padding left, zero. Each mattress was merely a bag of springs. Who knew under all that fluff? So what if I purchased then new back in 1996? They’d always had on protective covers. I guess I thought they’d last forever – WRONG!!!!

Luckily when I was registering Adelaine for Pre-K, the director mentioned that she had heard about a new law requiring that all mattresses sold in the U.S. had to be flame-retardant (which really means laced with toxic chemicals). I can’t begin to explain how that topic got started, it must have been a God Thing! Honestly, I am so fed up with having to research everything these days, I wanted to just ignore this, but after having cancer pay us a visit, I decided not to, good thing!!!! Here’s what I found out. In a nut shell, it is true that in 2007, the new law was passed. The flame retardant materials consist of arsenic, rat poisoning, and formaldehyde. This is a huge deal because people sleep roughly 8 hours in their beds every night, plus their entire body is lying on it, plus they have their faces very close, if not right up against it. I read stories about people who’d had headaches for years and it turned out to be because of their mattress. Unfortunately, those were someof the more positive stories I read.

Here are some links from the research I found on toxic mattresses …

http://www.nontoxic.com/beds/fireretardentalert.htm,

http://www.healthychild.com/cribdeathcause.htm,

http://www.care2.com/greenliving/some-c … toxic.html,

When Mason was a baby, I remember the plastic mattress in his basinet had a funky smell. If I knew then, what I know now, he would have never slept on it, not for one nap.

This article is one of the best I’ve read recently about the toxins we are all exposed to and what we can do to protect ourselves. It sums up hours of research we’ve done!!!! http://articles.mercola.com/sites/artic … oxins.aspx

So, luckily we didn’t run out and purchase the cheapest, deceit mattress we could find. We found a great mattress making company located locally, who was willing to make us our mattresses exactly to our specifications! The innerspring base will be made of all natural materials, with a dust mite proof, allergen free, three inch pillow top, made of natural latex. Most importantly, the outer cover will not be made with the fire retardant materials (we will be signing a waiver for that). Instead the outer cover will be made of a natural mock cashmere fabric.

But what about the millions of Americans who don’t know about the toxins they will be sleeping on? The people who don’t really care are the people who don’t really understand. The law is not really to protect us from our burning beds (none of the Powell children smoke in bed), but it is to protect the huge conglomerates from small business owners who would refurbish used mattresses with materials which were affordable to them and sell them at an affordable price.

The best part of our mattress buying experience for the boys, is that even though we are having the mattresses custom made, we still did not spend a fortune. In fact we got them at an excellent price, less than a third of what retailers would sell them for, plus they won’t have those nasty, toxic chemicals in them. Adelaine’s bed was made 6 years ago, so I am assuming it does not have all the chemicals, but she is next in line for a custom-made one. I’d rather purchase her one now and sleep well knowing her mattress is safe from poisons.

What else have we learned during our mattress education extravaganza? Not only are new mattresses highly toxic, but, we will not be using those plastic, or synthetic mattress covers anymore. Natural wool or cotton pads that are non toxic will be our new choice. Also if we ever had another baby, we would have a custom crib mattress made. Sadly, the government doesn’t tell people that SIDS, illnesses and diseases, asthma and other respiratory diseases, and cancer can be greatly contributed to because of these mandated toxic materials. Another bit of information we discovered that I thought I’d pass along is about flame retardant pajamas. These are highly toxic as well. These chemicals are found in simple blood tests for toxins in children. We will be avoiding these as well.

All these “new” discoveries we’ve made since Adelaine first got cancer makes me wonder at what point are things really going to change here in America? I hope Adelaine’s cancer helps educate people about cancer and what we can do to prevent it.

I’ll leave you with this…

http://www.ewg.org/reports/mothersmilk

It is so heart breaking that cancer is so ramped here in America verses any other country. The very best thing for our babies is breast milk, and even that is being tainted by all these toxic chemicals. Why? Why? Why? If I could go back and change how I lived I would. I was just so unaware of what was all around me. All I can do is share with others and change how I do things. I hope that we can all ban together and make significant changes in this country.

Angela

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The boys are officially on summer break as of 12:40 yesterday afternoon! Today we slept in played games and went for an evening bike ride. Adelaine now rides her big girl bike when we go to the boat park. So now I’m one of “those people” who rides their dog around in their bicycle cart. What was once a Princess cart for Adelaine is now exclusively Daisy’s, and I’m sure if Daisy could talk she’d agree that it was a perfectly natural progression. Daisy sits in her cart wearing her prettiest dress with the fan blowing in her face like Adelaine used too! The next step would be that I buy a baby sling from my friend Annike and carry Daisy around in it like she’s my baby. When people go to peek in to see my baby, I could smile and comment, “at least one of my children finally got my curls”!!!

Adelaine is feeling great! She had a few days that she was not at all herself, but she never did get symptomatic with some horrible funk from the virus that had settled in her blood. She has had the Mona Vie faithfully along with the Juice Plus. We’ve been putting the garlic & coconut oil mixture on her feet every night, and using the oreganol, and I must say it has worked great. Her cough is completely gone and her sinuses are cleared! We’d also starting putting “perfume” on her Kitty that she sleeps with every night, which is really Eucalyptus oil to help clear her sinuses and it too has been incredible. Thanks Lisa, you have been heaven sent to give us all these wonderful tips!

Adelaine is also getting her sun therapy in order to get extra vitamin D. She spends at least 20 minutes in the sun every day. Many of the doctor’s we’ve seen have said that getting sun every day is a natural way to fight cancer. This goes against many of traditional doctors. We know so many people who are literally scared to go in the sun, but we aren’t quite so shy of it!!! Bowen actually looks like he doesn’t even belong in our family. He is as brown as a berry! Tonight I told him to look in the mirror and tell me if he looks different. He looked and said, “Yes, my skin is dark”! He definitely takes after his Uncle Jason on that one, lucky him! We all have had about the same amount of sun exposure but somehow Bowen has got us all beat. Mason is the fairest, but he has a nice tan and so does Adelaine. We’ve joined the pool this year and have already worn the pads off of Bowen’s toes! Tomorrow we are getting him a pair of swim socks so his feet can heal!

It’s looking to be an amazing summer for the Powell children. In just two weeks we fly out to Maine for Camp Sunshine. This weekend we may wind up in Orlando to use our Universal tickets before they expire. I’m hoping we can turn it into a 3 or 4 night get away, but we’ll see. Next week the boys have art camp and they are very excited. Ms. Griffin, Bowen’s Kindergarten teacher will be instructing the class. We think very highly of her and rank her right up there with Mrs. Whipple. Bowen has been super blessed with the very best teachers in the world!!!!

After summer, Adelaine will be going to Pre-K, for 3 hours a day, 5 days a week. She will be at Lad N’ Lass just like her guys were. The director of the school is simply amazing. She spends a lot of time placing the children in class groups that she feels will be the best match. Adeline is so excited and I know she is going to love it. School for her begins after Labor Day, so she will only have a few weeks after school starts before she will be off treatment.

I’ve spoken a lot about Bowen and Adelaine, so here’s what’s going on with Mason too! Mason is especially excited to be home for the summer. He just loves it when we can all be together. He really is one of those rare people that, although we ALL have a sin nature, he doesn’t have to fight it very hard. He is instinctively a good- hearted person. His thoughts and emotions run very deep. His love and knowledge for God, just amazes us. He always thinks about the other person, and the end result. I am so glad to have him here with us. He is such a good leader and the other children just seem to follow.

Doug and I are so very blessed by our three children and our family. Were hoping that this summer is going to be the best any of us have ever had! It feels so good to have everyone home again so we can spend time getting to know each other better and loving on each other! Thanks to all of you for being there for us and cheering us on and praying for us. We love you!

Angela

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Sorry for the lack of updates, our computer crashed last week! I made it home from my little get away and dove head first back into “my life”. (Before I forget, I can’t check my emails right now, so please forgive me if you’ve not heard back from me yet)! It was very exciting driving home knowing I’d be met with lots of smiles and big hugs! Although I wasn’t actually here with everyone, they never really left my mind, well not totally!!!! Honestly I was also a little scared to return home, don’t get me wrong, not because of Adelaine, but because of the “big C” that somehow never really seems to go away. I have a new way of describing all this. It feels like a hyena is continuously running at me and stalking me, waiting for the chance to nip at my clothes and occasionally take a chunk of my flesh. So far it hasn’t been able to take me down, well not permanently. I’ve tried running from it and I’ve tried facing it head on, but so far it’s still here. There’s just no getting away from it. It’s a stress and strain that we’ve just had to adjust our lives to. The t-shirts I see everyone wearing really does sum things up nicely, Cancer Sucks!!!!

By the time I got home, Adelaine’s steroids were almost completely worn of. This was the first time in two years I’d missed out on that! I’m really looking forward to her not taking those anymore. She seemed like herself for the most part, all of last week. Doug took her back to the clinic on Thursday. Her ANC is now 1,000, which is really good considering! Her white blood cell count was still a little lower than it should be, but they told Doug they didn’t want to see her again for two weeks. Then, on that day they would be putting her to sleep to do the spinal injection of chemo that she gets every three months. They’ve cut her daily oral chemo down to half doses for the next two weeks. It would seem more reasonable to me for them to check her levels every week and make sure she is on the right path and then decide if she still needs half or whole doses. But, I’m not a doctor and besides, I’m so completely sick of that place that not taking her there for two weeks sounds good, really good!!!!!

I know I’ve taken a trip to negative town about the clinic, but I’ve been holding back for so long, that it just seems to be bubbling over. Did I mention that on the same day of the relapse scare that the receptionist actually yelled at me over Adelaine’s insurance? Plus they had me sign another one of their forms that explains what will happen if you arrive early for your appointment, or worse, if you arrive late. (Yes, that’s the kind of pressure these parents need to be dealing with, as if brain cancer isn’t enough, you know?) FYI, did you know if you are late for a three minute finger stick to test your blood levels, you will have to reschedule for another day? Also, if you are not scheduled for a finger stick and would like to make an appointment to have one done because you are worried about your child, you may have to wait a week? It always seems to be one thing after another. Here’s how I would describe the clinic…

It feels like they are so extraordinarily busy that the once you walk in the door there is this conveyer belt which runs through the building, and has these little square boxes attached to it. They lift you up and try to cram you into one of the little boxes, but you don’t quite fit, so your arms and legs are flailing in the air. Next they put a piece of duct tape over your mouth. Once your securely crammed into the box and the tape is placed tightly over your mouth, the conveyer belt moves slowly, VERY SLOWLY, until finally, after you are completely emotionally and physically exhausted, the ride is over! That’s how I would describe it! Cancer sucks and frankly so does our clinic!!!!!

Wow that felt really good to get out there in the open!

All of you who have had similar experiences with our Saint Petersburg Oncology Clinic, the hospital director, Barbara Schubert, says she would love to hear from you. You can contact her at (727) 767-4971. She can’t know there are problems over there if we don’t tell her. Even if your child is no longer in treatment, she would love to hear about your experience. So many people have told me how miserable the clinic has been, so please call Barbara to help all those poor families that have not learned their fate that they too are about to be gnawed at by the ugly hyena!

…so what else is new? Bowen watched the first ten minutes of ET while I was away on vacation. Yep, he didn’t make it past the scary part to see how wonderful ET really is, so now he is terrified to sleep in his bed! Tonight I convinced him to just face his fears and watch the movie with me. He agreed, probably not to face his fears but more likely to not have to stay in his bed by himself. We went into the bedroom to watch it, but Doug already erased it from the DVR, so I guess Bowen will not be able to face his fears this night! Let’s put it this way, Bowen slept scrunched up against me for so long that between him and that hyena (no, I don’t mean my husband!) I could really use some more alone time and a really good night’s sleep!!!! One thing’s for sure, by tomorrow night Bowen will have watched ET in its entirety, even if Best Buy, Circuit City, Target and Wal-Mart have all jacked up their prices to . . . , well there is no price too high!!!!!

On the sunnier side, Mason and Bowen went to Aquatica, Sea World’s new water park, with their big buddies Matt and Katherine yesterday. The boys had so much fun, they can’t stop talking about it! I’ve been hearing more and more about their trip all day today. They rode rides and ate junk food all day and just had a blast!!! They are so cute telling us about their big day. Thank you so much Matt and Katherine! Our boys will never forget you two or the fun things you’ve done together this year! Also thank you CCC for putting such a wonderful program together.

As for the CCC, Adelaine has missed going there so much! Two weeks ago she was being tested for the relapse, last week, because her counts we still too low to leave the house, we kinda told her that all the teachers were out of town for the holiday. (It makes it a little easier when she thinks it’s their doing and not ours)!!! She has her dress already picked out and wants me to paint her nails with sparkles to get ready for her big day, (which happens almost every Tuesday, isn’t she lucky?)! She may need to rethink the dress since they are having a swim party, but we’ll see!

Hopefully our computer guy was able to fix our computer over the weekend. I am praying that he will at least be able to save our pictures. Also, thanks everyone for the messages and emails you’ve sent for Adelaine. Lisa thanks for praying I will be in touch soon!

Angela

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