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!

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!

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.)

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!

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.