Journal Entry

I know I told you all to check back this weekend for MRI results, but....

The radiologist that usually reads her MRI's is out of town until next week. So, by choice, I opted to make you all wait until next week for the correct reading of it. This is very important because it will decide if we start Brenna on a rigid course of cesium chloride (with DMSO) or not. The DMSO has such a frangrance that everyone within a 20 foot diameter will run and the large doses of cesium are said to be painful. But if it's going to cure cancer, I think a few months of it would be tolerable-maybe not to Brenna, but to her parents! But if the current treatment is working we are going to stick to it.

Her school is great at accomodating her treatments and her awesome teachers are very understanding of her turning in her assignments late. But she is very adamant about getting it done. We are having a few issues with one of her aides, but other than that she loves school and her teachers.

We are off to St. George and Las Vegas this weekend for 2 separate soccer tournaments-at the same time, however. So the parents get to split up again! Do we ever get to sit by each other-even at church? NO! At least this getaway will keep our thoughts busy until Dr. Boyer can read the MRI. Brenna wishes she were going to LV instead of St. George. Me too! We might see Elvis!

So, as soon as we get the MRI results we will update this website and send out a notification to you all.

We love you and appreciate your thoughts and prayers on Brenna's behalf.

The Augats

Journal Entry

Today is Brenna's 13th birthday! She started off a little stomach sick but within 30 minutes was curly haired with a 'Happy Birthday' tiara on top and adorned with a Spongebob t-shirt to catch the bus to school. She is so excited to be a teenager, much to the chagrin of her parents. The attitude is showing through already. But being in a wheelchair limits her storming to her room and slamming her door abilities. She is having a friend party on Saturday. She requested to paint ceramics-her favorite hobby. Then she requested the whole family (on both sides) meet at her favorite Mexican Resaraunt, El Farol, for her birthday dinner. She promised she would try to swallow something.

We can't believe she is 13! She was diagnosed 4 years ago! She has been to heck and back and has the war wounds to show for it. We took her picc line out a while ago as insurance notified us it would be harder to access supplies and also we stopped going to the Modern Health Clinic for infusions. We are undergoing 2 types of natural treatments now. Our main one we hit every day for 2 hours is at the Omega Cancer Clinic. We are doing therapies from Dr. William Koch and Dr. Royal Rife (1920's) along with other therapies like Silver and Irridium. Dewayne Smith, our treatment guide (for lack of a traditional title-he is an occupational therapist and a biochemist), is awesome. He is truly working for Brenna's wellness. Check out their website-it's pretty cool when you move the mouse around-the peoples' eyes follow the cursor! www.omegacancerclinic.com

The other treatment is the VIBE (multi-wave occilation) treatment. We do that in Sugarhouse 3 days a week at a Yoga studio called Soma Yoga. We have only done that twice, but I felt the tingly after affects. It's supposed to align all the vibrations in your body back to their natural state. Check out info on it at www.somastudio.com.

We are having another MRI January 10th! I promise to update the website as soon as I get the results!

HOPE YOUR 2006 IS SPLENDIFEROUS! (In the words of Tigger)
Love to all! The Augats

Journal Entry

Hello to all our loved ones and friends!

Well...we had an MRI last Thursday-just one month after starting our new treatment. It wasn't what we expected but it was still exciting news. The dimensions of the tumor remained the same, however the swelling below on the lower part of the brainstem went from a D7 to a D5 (Dewayne said a D2 would be great!) That means that the tumor is loosening its grip on the brainstem thus allowing the brainstem to flow a little better.

November 9th, we took her off all her prescriptions-just all of a sudden-because the anti-toxin wouldn't be as effective on the tumor with all the FDA approved toxins in her body. The next day was the best day ever! She felt good, had so much energy, didn't need oxygen. It was the best! Then she woke up the next day with a wicked heartburn. The prescriptions were for hiccups and nausea so the heartburn was unexplained. But I think we have it under control now with an addition of green drink to her diet to make her system more alkaline. No prescriptions is also a little easier on the pocketbook...they were $150/month out of pocket.

The improvements we notice from the new treatments are: her oxygen sats are at 99% on just 1/8 lpm (common was 93% on 1/2 lpm) and she sometimes needs no O2 support at all; she used to be severely dizzy all the time-now, she gets dizzy maybey once every other day; she had a severe nastigmous (shaking of the eyes) and, now, that is hardly noticeable; she is noticeably less nauseaus. It is quite exciting that she is enjoying going to school all day and getting a 3.9 her first quarter! (The B+ should've been an A, but the aide forgot to hand in 2 assignments-so I count it as straight A's!)

Wanted to show you all how cute Brenna and her sibs were on Halloween, but after about 3 weeks, I realized I had neglected to reinsert the memory card into the camera after downloading previous pics. So, I had been taking pictures of all kinds of things and it was being saved onto nothing...nada! I was wondering why the flash didn't work. I can't read the digital screen display since I broke it at Camp Hobe. AAAUUGGGHH! Brenna was the cutest leapord ever. She loved trick or treating for over an hour and having the most candy out of all her sibs. The only problem was, mom is the one that gets to eat it all!

Thanks you for keeping up with Brenna's progress. Can't wait for the next MRI news! Pretty soon, you will all be invited to her "TUMOR GONE" party!

Hope your Turkey Day is seriously for the birds! My favorite part is the cold turkey sandwiches smothered with mustard the weekend after. Love to you all!

The Augats

Journal Entry

Time for a small update, huh?...

Well, Brenna has been doing great lately. She loves school still. Her favorite class is 'theater', of course. The kids haven't warmed up to her like a mom would hope. Even her best friends from Elementary haven't made even small efforts to include her. It's kind of sad, but we have to take everything in baby steps, I guess.

BUT NOT FIGHTING THIS TUMOR! No baby steps here. After the last MRI, not even a day, a close friend of ours, told us about a "...man who can cure cancer." His uncle was cured from prostate cancer with this procedure when the traditional docs gave him 2 weeks to live. So we checked out the website, talked to the director, had our Dr. Marietta check it out for legitimacy, and decided to proceed. Mr. Smith stated so matter-of-factly that her tumor would be gone in 30-60 days. THAT'S BEFORE CHRISTMAS!

I know, I know. It sounds too good to be true. I also told Gordon that I don't want to get my hopes up too high because I am too emotionally rocky to handle another dip in the rollercoaster ride. But all our prayers and feelings are so positive about this, that all we are going to do is have faith and hope that this is it! This is what will work for Brenna. The only side effects would be a small fever and maybe itchy skin.

We went to St. George this weekend to see "Joseph and the Amazing Technicolor Dreamcoat" at the Tuacahn. We watch it on DVD all the time and we know every song word for word! The music was the same, but the play was completely different. It made us laugh and sing. We enjoyed it completely! We got 4 tickets compliments of Candlelighters. Thanks, Kandy. The weather cooperated and it was a fun, relaxing trip.

Thanks for checking in and we'll keep you posted on the tumor shrinking progress! Love to you all!

Journal Entry

HOLY COW!

Are we glad it is Monday! Last week was very eventful. 2 weeks ago, Brenna was roughly diagnosed with bronchitis and given a broad spectrum antibiotic. She slept a lot and missed a bit of school. Last weekend she slept almost all day every day. Then, last Monday, mom just felt like she wasn't right so we skipped school and went to our naturopath doc and she ran a blood test. About 4pm she called us saying her CO2's were too high-say 95! Normal is below 40. She said she would do some research and call us back. Just as Brenna went to bed, she called us and told us to have her ambulanced to the emergency room. "If her CO2's reach 100, you won't be able to wake her up." Needless to say, we called Gold Cross (the ambulance my insurance would cover) and packed a bag. After our usual 4 hours in the emergency room, we ended up in PICU. YUCK! The logic and resolution behind the high CO2's was that she was sleeping a lot and without her bipap on. She doesn't expell her carbon dioxide like she should so every single time she sleeps, day or night, we need to put it on her. After 2 1/2 boring, somewhat useless days in PICU, we went home.

Then, Thursday morn, she woke up in a frenzy and had a seizure for about 4-5 minutes. To us, it looked like she had just passed out as she was totally blue. She had jaw-lock, so when she didn't come back for a while, Dad tried to pry her mouth open and give her CPR. He got bit-really hard-twice. IT WAS QUITE SCARY! She passes out periodically and she comes back after a few minutes and we are somewhat used to it. But this time it was just too uncomfortable. Just as the emergency vehicles arrived, Brenna started coming to and responding to questions. She was spitting out blood and the EMT's suspected pneumonia as they couldn't hear movement in her lungs. We chose to drive her to the emergency room. The blood was the ony reason we went. We sat there for 3 hours and during a docs exam, we noticed a missing tooth in Brenna mouth. THAT'S WHERE THE BLOOD WAS COMING FROM! Lungs and blood test were clear and we went home.

A few hours later, the emergency room doc called us and said, "...get her up to PCMC right away! In the x-rays we noticed that her tooth is sitting at the top of her airway and could be aspirated into her lungs"-which would be very bad! So we packed another bag and ran up to PCMC. We sat in the emergency room for SEVEN -7- SIETE HOURS! I kept asking the docs if this wasn't more of an urgent situation than they were treating it. And they assured me they were comfortable with it as she wasn't doing the chicken dance or anything to jar the tooth free. The took her into surgery and put her out and used a scope to reach in a grab the tooth. Afterward, the surgeon brought me the tooth and stated, "She is very lucky to have paralyzed vocal cords because the tooth was sitting inside her voice box and if it wasn't paralyzed, the vocal cords would slam shut to protect itself and she would have suffocated and died. HOLY COW!

Brenna has one awesome guardian angel looking out for her! She is feeling and looking so much better this weekend and she is back in school and loving it. We got approved for a second part-time aide. Now Mom doesn't have to spend her time at the junior high 3 days/week-although, I am learning a lot!

During the hospital stay, we talked them into doing her MRI instead of having to come back in 2 weeks. The results were "STABLE" which, I guess, is good. I was kind of depressed because we waited 6 months in between MRI's so we could get major shrinkage. We are praying for a new direction in her treatment-and I think we were directed to one. But that is info for a future entry. See you then.

Thanks to you all for your thoughts and prayers- Peace. Out.

Journal Entry

Lots of new stuff...

We really enjoyed Camp Afoofa this year held at Camp Utaba up by Pineview Reservoir. It rained the day we were leaving and the mattresses in the tent trailer got soaked. So I postponed the departure until Saturday. But the sun came out for more than an hour and dried them up. So it was back on again! We were the last to arrive and set up. Despite the bumpy start, the kids had an absolute blast. Brenna loved being with her good friend Hailee Iverson. She was in a wheelchair too because of her ankle surgery. We made many new friends, hung out with old friends, (not in years, of course) ate much good food and enjoyed many fun crafts. Brenna's absolute favorite was the pony rides. She got to ride in the carriage and on ponyback. She was grinning from ear to ear! It was very cold and sometimes it rained. But the company was good and we had a dining hall to hang out in. Of course the day we pack up, the sun visited us and it was beautiful. It's a lot of work, but Brenna loves to camp!

Brenna loves school so much she asked to be put on a full day schedule! So the princess got her wish and her mom has to fill in as the 2nd aide because the district won't hire one until she proves she can keep her attendance up. I will sacrifice so she can enjoy being in a "normal kid's world" again.

But, here came our speed bump...Brenna was fighting a roughly diagnosed bronchitus last week and she was just exhausted from it. She slept all weekend and by Monday, I thought she just didn't look right and wasn't acting right. So we took her to the natural clinic early and they ran an ABG (arterial blood gas-big needle-deep vein). Brenna is always so brave and didn't even blink. They numbers showed that her C02's were pretty high-say, 95! Normal for a normal person is below 40. Brenna's normal is mid 50's. If one's C02's get too high, they "will go to sleep and never wake up," said our doc. We didn't find out the severity of it until 9pm so we calmly called an ambulance and had them quietly take her to PCMC emergency room. We got into PICU at 1:30am and FINALLY got her on a bi-pap. The reasoning behind the whole thing was that she wasn't on her bi-pap when she was napping during the day and she didn't expell her carbon dioxide like she should. Thus, raising the C02 to critical levels. All in all, it was a rather quiet and uneventful hospital visit. She is sleeping quite a bit. But, she looks and feels better already. She can't wait to go back to school next week. She has enough homework to keep her busy however. Parent teacher conferences were today and she has A's in every class!

We had an MRI this morning. I didn't like the 3rd party doctor's version of the results ("bigger in some areas, smaller in other areas") so we are waiting for the actual radiologist's report. We'll let you know!

Keep On Keepin' On! ******* Love, The Augats

Journal Entry

Brenna has attended one whole week of school! She absolutely loves it. She had a bit of a rough time getting used to getting up at 6:30am vs. 9am as before-but she now goes to bed at 8pm if mom is on the ball. This first week was a small trial. She got tired by 5th period and she got sick every time she got her feeds. Honestly, I think the nausea was just a nervous stomach because she had been doing so well previously! So I think we will see what next week brings for her.

She is really enjoying using her brain again! She has sat on the couch-sick and tired-for over 2 years with no form of schooling because she was so sick and couldn't concentrate. Her left side has a touch of atrophy which walking on the treadmill helps.

I couldn't believe the district actually got everything in place the day school started. They approved her for one part time aide which infuriated me at first. My thoughts were, "They fine parents for not sending their kids to school. And here's a kid who wants to go to school and they say she can only go part day!" But after some counseling from her nice school counselor, I came to the conclusion that it is best to see how her stamina and strength will be for the first few weeks before they hire someone for the second half. She wants so much to go all day.

The busing got into place-but they come at a different time every morning. It is quite frustrating. But she is excited to actually get to ride a bus. Before, there was no hope of riding a bus because we live only 2 streets away from all the schools! (elem., jr. high, and High school)

Thanks for keeping up with us and we send all our love!
The Augats

Journal Entry

Hi all our friends, family, aquaintances and total strangers!

I know, I know. You are all quite upset that this site hasn't been updated since July. But, honestly, there has been no change in her tremendous progress and no new exciting news really since April's MRI. Brenna is still feeling and looking great. She is getting stronger and more energetic as the days go by. She is more alert and improving in every aspect. Her parents really want quicker improvement in the areas of breathing, swallowing and walking. BUT....as the Lord is teaching us patience....natural remedies take FOREVER!

Brenna is starting junior high NEXT WEEK! Mom is very frustrated but grateful for the 503 provisions that are available for handicapped children. They are offering busing, special scheduling and 2 aides to help her every day. Being the suprisingly organized mom, in June we started to get the process going by talking to faculty at the school and the district, with a meeting set up in August to finalize things. But when we met in August, everyone was scrambling to get off square one! "I hope we can get the busing in place by school." "I'm pretty sure the district will approve the aides, but the school will have to find them." "I hope the 503 gets approved quickly so we can get everything in place." She can't even take the placement tests until school actually begins and they take 2 weeks. I made sure they knew it wasn't mom who put things off.

We are going to see how her energy level will hold out with a full schedule for the first few weeks. Brenna picked out some very cute pink reading glasses as her vision is getting a little blurry at times. She looks really cute in them. We will be checking her out 2 days a week for a 1/2 day visit to the clinic for IV therapy.

We are still continuing the chiropractic. The doc says it's really a battle with her spine because, after it gets adjusted, the amount of time spent sitting in a recliner counteracts the progress made.

Brenna has made a commitment to walk on the treadmill at least 4 times/week. We up her goal a little bit every day. It is really helping improve her walking. Sometimes I think we enable her by supporting her every time she walks around because, at times, I get lax on the support and she walks pretty much all by herself. There is still a moderate balance issue.

We have gone to Bear Lake twice and Brenna enjoys the boat rides. I asked her if she would like to be buried in the sand and she was disinclined to aquiese to my request. She says she just likes to watch.

We are planning a trip to Colorado to use her GKTW Passport one last time. It was awesome! I wish we had more time to take advantage of more parks available on it. Summer flew by way too fast.

Soccer season is upon us. We have 5 practices during the week and 3 games every weekend. Plus, scouts, piano lessons, young womens. Mom's taxi is an understatement! I only wish I got tips each trip!

With love and plenty of sunshine to go around!

The Augats

Journal Entry

Last Friday was special for Brenna because she was the star! She was one of the cancer representatives for the Relay For Life. We even got to be the "cancer story" speakers for the opening ceremony. It was fun and sad retelling her story from the date of diagnosis. The best part was when I said, "Her tumor is shrinking!" and everyone cheered. Brenna had the biggest following of caregivers of anyone there! She felt so special. We so love and appreciated all who came-even as far as Tooele and Kaysville! She went around the track 4 times. After winning the quilt from the raffle, getting a massage and watching Sidney Russell, her 5 year old cousin, dance and sing karaoke, and winning a few prizes at the game booths, she finally got worn out. It was fun talking to the other cancer survivors and eating the delicious buffet the ACS provided.

Check out our pics from the RFL in the pic gallery!

We never got a response from Camp Sunshine. So since camp is on this week, I am pretty certain we still weren't accepted. We are all pretty sad about it and it spurs some special memories from last year. Next year, when Brenna is swimming and running, we will tear up that camp! And totally face the PCMC docs.

Journal Entry

Wow! What a busy week! I thought it would be a little relaxing since the 3 boys were at Camp Hobe this week. But I was proved wrong.

We were denied acceptance to Camp Sunshine because of Dr. Bruggers. I found out on Monday morning and began the process of appeals. I called Dr. Bruggers and Dr. Gault (sleep study clinic) and begged them to reconsider. The only thing Dr. Gault said would make him write a recommendation letter would be a good CO2 blood gas result. Well, we went on Tuesday to Lakeview in Bountiful and the biker chick nurse was a real treat. "You are lucky. I am the best!" she said as she told us how she hates her son and is glad he's far away in NY and how she got bit by a wolf spider and needs to have the bulge on her leg drained. Yep, a real treat. Then she poked around in Brenna's wrist and couldn't get an artery. So she pulled the needle out, clinked it on the wheelchair, then capped it off. She proceeds to prod Brenna's upper arm and grabs the same needle! I asked politely if the needle wasn't now non-sterile as it had touched the wheelchair. She flippantly said, "Oh, I didn't notice that it hit something," and ran off to get another. After an hour and a half of her trying and not getting anything, I said, "No worries. We'll just go to PCMC."

And that we did on Wednesday with no success there either. Troy, the life flight RT was so nice and sweet to Brenna and tried so hard that we forgave him. They ended up doing a capilary blood draw. But arterial is more accurate and our Naturopath doc requested another poke. So, Thursday, we ended up back at Lakeview and asked for the best RT to do the draw. Dennis was very nice to Brenna and got it in 2 minutes. But to our chagrin, the tests came back a little high. Dr. Gault said he would do what he could without going against the numbers.

I HATE "THE NUMBERS"! Her tumor is shrinking! She is energetic, hardly ever nauseas, is getting stronger and doing great but the numbers say she is sick. And the traditional docs are sticking by the numbers. And it has ruined our chances of going to Camp Sunshine. Brenna is heartbroken-especially after getting poked 6 times in 3 days for her cause.

The good thing that came out of this week was that my boys had a blast at Camp Hobe. As much as I am upset at Steve Lloyd for not even trying on Brenna's behalf, I am grateful for the memories the camp has given them. We look forward to sending Brenna and Jordan to Teen Week next year! (-if the traditional docs don't find any numbers to throw at us.)

Saturday, we spent all day going from field to field at the 3v3 soccer shootout at Cottonwood Heights. Gordon and Jordy played. It was all day with no time to stop for lunch! They didn't come home with any medals, but now it is a tradition that we all enjoy. Glad it's over.

Next Friday is the Relay for Life! Brenna raised over $500 alone selling the bracelets! She has enjoyed doing a little commerce as, before she became immobile, she loved to sell things all the time. We will update you on the whole event. I can't wait to walk with all our cancer friends on the survivor lap and all our caregivers during the caregivers lap. Brenna and mom are speaking at the survivor dinner. I hope I don't just bawl through it. I am so emotional lately.

Until we e-meet again! Love, US

Journal Entry

Hi All!

My boys are heading off to Camp Hobe today for a whole week! I don't know if I will be at peace or if I will miss them. They are so excited! Brenna and Hannah are going to day camp at Camp Hobe. Because of the traditional doctors recommendation to not allow Brenna to attend longer, she is only allowed to day camp. She is sad, but OK with it. They claim her respiratory situation is too volatile. (sp?)

Well, Mom is very emotional about the whole thing. First of all, Brenna is not followed by traditional oncology. We have an integrative medicine doc, Marietta Bergdorf, and 3 totally awesome nurses, Heather, Glenda and Jason, who see her 2-3 times per week that are way more educated about Brenna's condition-which isn't scary during the day. But when I asked Chris Beckwith if I can use my natural doc instead of oncology, she said, "We will cross that bridge when we come to it." WELL YOU'VE COME TO THE BRIDGE, GIRL! But instead of crossing it, they just pushed us in the water and let us drown. Steve Lloyd didn't return my call for 2 whole weeks so I put most of the blame on him. We didn't have time to work through it.

I'm sure I'll be over my emotions at the end of the week.

Brenna in the meantime is still doing pretty good. She is a little nauseas after her feedings. She is slowly getting stronger and she wants to start going to school. Sure. for the last 4 weeks when it is fun time!

Soccer is finally over and we are looking forward to a short fun summer. We still don't know if we are accepted to Camp Sunshine in Maine for the end of June. We have one soccer tournament in Cedar City and the Relay For Life coming up on June 17th. It's at West Jordan HS and there is going to be a carnival with cheap stuff for all the kiddies after the ceremony at 6pm. Try to come!

Journal Entry

Hi All! There is not much to share right now.

We had a SHRINKO DE MAYO party for Brenna after the news of the tumor shrinkage. It was kind of a special date anyway, because 3 years ago, on the cinco de Mayo, she woke out of her coma after 10 days in the PICU. Another coincidence...the MRI was on the exact same day she was diagnosed 3 years ago-April 25th! Spooky!

She had a blast at the party and played her favorite game, Scattergories, with all her cousins. She absolutely loves to play with them. There is Simone, Kira, Renell, Karli and Alexa. Brenna loves the game because she rocks at it! She is a very smart girl.

We are in the process of signing her up for junior high! A scary thought to me, but she is excited. The thoughts of mom...she is very limited at the moment in her mobility and her fine motor skills and respiratory functions. I am trying to get the district to assign her an aide to stay with her all day to help her get from class to class and help her with her locker and writing her work and helping her with lunch and hanging out with the right crowd and....yeah, a lot to think about. We'll see what comes out in the wash in August, because she will be improving by then, I'm sure!

We took her off the prescription Reglan (sp?) or Medaclopramide and she is doing fabulous. She is only on 2 prescriptions right now and hopefully we can wean her off those soon. We are still taking many herbs and natural cancer treatments and getting IV's and chiropractic care. We are so grateful for the many good days she has been having. And we know to whom we are grateful for this miracle!

Much love and all the sunflowers you can pick! (Yeah, summer!)

Journal Entry

HEY ALL! Great news! Brenna had an MRI on Monday, April 25th. It was 3 years to the day she was diagnosed. The results were nothing to shout about at first. I read, "looks smaller, but it could be due to the positioning of the scan or the cursor." I told myself that 'stable' was still good, but I was hoping for shrinkage. Then the nurse, Glenda, saw my complacent attitude and told me to look at the detailed report. Then I read, "is smaller by 3mm as compared to scan 3 months ago." YEAH! 3mm shrinkage IS HUGE! That is 4mm in the past 6 months! Glenda stated that the medical community has never seen a glioma shrink before so they are still trying to dismiss it as a technical mistake. THAT'S OUR MIRACLE!

We attribute the shrinkage to the IV therapy Brenna is receiving at the Modern Health Clinic (including 3 cancer treatments) and the awesome chiropractic care from Dr. Wood at WillowCreek Chiropractic.

Right now, she is feeling good 85% the time, her stamina is up, her nausea is down, her therapists say her muscle strength is up...by Christmas we are sure she will be running and swimming and enjoying junior high!

She had a great time in CA last week due to her feeling better. We used her GKTW passport to visit Knott's Berry Farm, 6 Flags, LegoLand and a few other smaller attractions. Brenna's favorite was driving the lego go cars at LegoLand. The forecast said 75 and sun when we left so we packed all shorts and t-shirts. The partly cloudy and cold windy and somewhat rainy days led us to use the washer for the pair of pants Aaron wore day after day.

Love to all!

Journal Entry

Sorry we haven't updated in a while....But YEAH! There is something noteworthy to share!


We found a combo of 3 prescriptions that helps Brenna feel better at least 85-90
% the time now! We are ecstatic! I didn't want to share until we were sure because we have cried wolf with 2 and 3 strikes-no one would believe us, huh? Anyway, we are using Reglan (metoclopramide)with Benedryl and Librax (anti-spasm/anti-anxiety) and Ziprexa (antipsychotic). Weird that brain drugs help the stomach. I was reading a book (I KNOW-I WAS ACTUALLY READING!!) about Jordan S. Rubin called 'Patient Heal Thyself.' He had Crone's disease and healed himself with natural stuff. AMAZING INFO! He explained how the second brain (in the stomach) is totally connected to the CNS. It makes sense why brain drugs would help her nausea. She of course is talking my ear off about all the things she feels good enought to do. School is in there in between shopping, going to Build A Bear, going to sewing lessons, acting lessons, piano and shopping. Just thinking about it makes me tired. Her stamina is very low right now. So I think we will stick to small outings.

We are going to southern California on the 16th retuning the 23rd (I hope no burglars read this.) We are going to use Brenna's Give Kids The World Passport. We get free tickets to Legoland, Knott's Berry and Six Flags and many other smaller theme parks. Along with the beach trip, we will fill up 8 days for sure! We'll let you know how the 80 degrees feels when we get back! We are really excited that Brenna will be feeling good for this vacation. It's been a while.

Our next MRI is the 25th! Pray for Brenna that we continue to see shrinkage. Shrinkage hopefully will bring functions back and good days and weight gain.

We are continuing our bi-weekly visits to the Bountiful clinic along with chiropractic 3 times a week. Dr. Marietta has now put Brenna on a new (but old) German protocol called 'Interluken'. It's a natural drug that is proven to erradicate tumors. I haven't done much research yet, but I will let you know how it works when she is swimming and running! SOON!

Our family is still plugging along-seemingly well! The kids are picking up the pace a little better-just in time to go off track! Soccer season has begun-I mean mom's taxi season has begun! We have soccer 5 out of 7 days a week. Thank heavens for Sunday! Tax season was good to us. Of course it went straight to paying off bills. But it helps us breathe a little. We had a dear, dear friend with lung cancer pass on in March. It was very emotional for Brenna and mom because we absolutely loved to enjoy her company and humor and smile every day at the clinic. Why is it that 99%
the people with cancer are the awesomest people in the world? We will miss her dearly. She taught us that "It's never all about you!" and "There's always enough love to go around" and, her favorite thought, "What would you do if you weren't scared?" Much love to Marci Wilder.

Brenna sends her love to all! Look for the Brenna entry next time!

Journal Entry

Whoa! We finally finished the IV antibiotics 2 days ago! They had to be administered every 6 hours via a picc line that is so small it took around 2 hours! Needless to say, Gordon and I were both running on little and very low quality sleep. Because the picc line runs so slow, we have to add an extra day at the clinic to give her everything she needs. And at that, we are still there 6+ hours per day! It is our second home.

Brenna has still been feeling crappy. Very nauseous about 80% of the day. Zofran worked a bit for her in the hospital, but when I went to pick up a prescription to take home, it was a $250 copay! I thought maybe we could try something a little more pocket friendly. But sitting here watching her cry and writhe in pain, it makes me wish I had just bought it. We are trying Raglan & Benedryl today. No results yet.

She is somewhat used to the bi-pap that insurance kindly agreed to pay for for 2 months and then they will try to hit us with a $6500 charge for it. We are looking online for a better deal. We are hoping that as the tumor shrinks, she won't be needing it anymore. We will find out more with her next MRI at the end of April.

Our spirits are a little doused and I am seriously thinking the guys in white coats are looking pretty good to me. We are plugging along and dabbling in shortterm and longterm prayer requests. The prayer of my heart is some relief for our little angel!

Journal Entry

Hi All! It is good to be out of the PICU and at least getting the typical 5 hours of sleep in my own bed. Here's the story... Thursday, Feb 17th, Brenna wasn't feeling great. I didn't think this too unusual so I was rushing her out the door so I could get to my hair appt. After all, having no grays is important, ya know. She proceeded to throw up on me and pass out cold. After which, my sister, Karrene, and I called 911. She hasn't passed out for almost a year now and I was caught off guard. Just like in the past, by the time the EMT's got her out the door, she was giving me all kinds of instructions to not forget her art stuff and the new stuffed animal she just bought, etc., etc. I was groaning about spending another grueling 6 hours in the emergency room. It was a little more than that and they sent us to the 4th floor. Yeah! The big screen TV with internet ready computer, private room--didn't last too long. That night she passed out and they sent us to PICU where we spent the next 8 days! They notified me the phlegm she was coughing up was from a bronchitis brought on by 2 gram-negative (life threatening) bacterias in her bloodstream. HOLY COW! And I was hoping the breathing exercises would take care of the phlegm. I was then grateful we ended up at PCMC. They gave her big time antibiotics and determined her port was harboring the bacteria so we had it removed and pic line put in. Meanwhile, her breath rate at night would go down to 2 breaths per minute so the docs performed 2 sleep studies and put her on a bipap, which she detests and fights every night. On top of that, I had to wash her hair THREE times in the PICU! That goo is so tuff to get out of her hair! THAT'S NOT ALL! On the blessed hour of discharge, (4:30 Friday eve-won't be back until Monday) insurance started giving me and Praxair crap about not paying for the bipap machine. "That will be $1200, please!" Sorry, no pocket change this year! PCMC wouldn't let us go home without one and I didn't want to stay another 2 days in PICU. They ended up agreeing to pay for 2 months and then, if we need it after that, we could discuss a purchase. We pray that the tumor will continue to shrink and give her back her functions and we won't need it. At home this weekend, I have had to give her 2 more weeks of Fortaz and one more week of gentamyacin. Brenna gets totally sick on the Fortaz and it is so hard to watch her cry while I administer pain to her. The docs don't know what to do about it. Hopefully, we will get an answer tomorrow when we visit clinic. What a stressful week! This too shall pass. (Gordon gives me uplifting quotes all the time.)

Journal Entry

One week ago, I took my good friend's advice and took Brenna to see a pain management doc, Dr. Sharon Weinstein at the Huntsman Institute. We had spent the last 15 months trying to cure the stomach pain while Brenna suffered. I figured by now, that it was the tumor acting up whenever and as long as it wanted and no GI or Oncologist or nutritionist could resolve it. Now, it was time to just manage the pain. She introduced us to Ziprexa. It is actually a mental disorder med, but it controls naseau, spasms (hiccups) and pain. JUST WHAT SHE NEEDED! It seems to be working pretty well. Brenna has 5 good days out of 7. I hope it continues to work for her. I'll let you know when we have used it more than 2 weeks.

Brenna felt good enough today to go to school for about 3 hours. She had a great time! Mom is nervous that she will be frustrated about being so far behind. I told her she could do sixth grade again and be with her brother Jordan next year. They both groaned.

When Brenna feels good she showers me with all the requests of what she wants to do. I can't wait to take her to do them all. But, we do all-day clinic visits Tues & Thurs, chiropractic appts three days a week, weekly physical and speech therapy appts and any doc appts we have scheduled that week. We are just a little busy. Just a LITTLE. I'm guessing by summer she will be doing what she wants.

WE CAN'T WAIT!

Journal Entry

Brenna just turned 12 in January! We can't really distinguish if the emerging attitude is from entering the realm of teenhood or just getting totally spoiled. She was diagnosed with a low grade JPA (juvenile pilocytic astrocytoma) wrapped around her brainstem in April 2002. We chose the conventional route at first-surgery, radiation and chemo (cut, burn, poison) and the inoperable tumor resisted treatment and began to grow. We went a more natural route which slowed the growth in 2003 and then stopped the growth in 2004.


Brenna's MRI on Jan 22, 2005 proved very exciting for us. This is the first time it has showed shrinkage. Just a tiny milimeter, but, HEY, it's shrinkage! The Lord has answered our prayers and we pray he will continue to bless her. We are hopeful she will make a complete recovery. Brenna's treatment includes chiropractic care, infusion therapy for immune support and an IV form of apricot pit called amigdalina. It is probably the simplest program we have been on yet.

We wouldn't have guessed there was shrinkage as her stomach pain continues to plague her daily. We are visiting a doc, Dr. Sharon Weinstein, who is a pain management doc who hopefully can help her put an end to a 16 month period of dealing with it.

After going to Florida last October for her Make A Wish trip, Brenna is now looking forward to using her Passport to the World and visiting California in April. She also can't wait to visit Camp Sunshine and Camp Hobe again this June.

Cím Publikálás dátuma
TWENTY FIVE! 2018.01.05.
O death, where is thy sting? 2017.11.05.
Happy 24 Brenna! 2017.01.05.
Happy Heavenly Birthday! 2016.11.05.
Hallelujah - An Easter Message about Jesus Christ 2016.03.27.
Happy 23, Brenna Boo! 2016.01.06.
Happy 22, Brenna Boo! 2015.01.06.
Remembering Brenna 2014.11.06.
Happy 20th Birthday! 2013.01.06.
6 Years Ago Today 2012.11.06.
Happy 19th Birthday! 2012.01.06.
5 Years Ago Today 2011.11.06.
Memorial Day 2011.06.02.
Happy 18th Birthday 2011.01.06.
True Meaning of Christmas 2010.12.23.
4 Years Ago 2010.11.06.
What Easter and Our Family Reunion have in Common 2010.04.05.
We do not mourn as those without hope 2010.01.19.
Embraced By God's Love 2010.01.11.
Happy 17th Birthday 2010.01.07.
It's been 3 years 2009.11.06.
Eternal truths can comfort us when loved ones die 2009.10.03.
Happy Birthday Brenna 2009.01.07.
Angels We Have Heard on High 2008.12.27.
Drugs R Not The Answer 2008.10.21.
Angels for Brenna 2008.07.23.
The First of Many Miracles 2008.06.12.
In the beginning... 2008.05.29.
The Best Mother's Day Ever 2008.05.26.
Life is Everlasting 2008.05.15.
Talk on Resurrection 2008.04.29.
Gordon B. Hinckley's Funeral 2008.02.05.
Brenna's 15th Birthday 2008.01.07.
One Year Ago 2007.11.07.
Brenna's Favorite Primary Song 2007.09.09.
It's about time 2007.07.30.
The Resurrection Is at the Core of Our Beliefs 2007.05.11.
A Little Update... 2007.04.26.
Precious in the sight of the Lord is the death of his saints 2007.02.24.
Sunday will come 2007.01.21.