I've been asked by the OR CFF to be the speaker!!!

Wow!
I am humbled and excited, nervous and thrilled all at the same time. I've been asked to speak at this years annual "Chef's Dinner & Wine Extraordinaire" for the Oregon CF chapter! It is their largest fundraiser. It is blacktie...I am so excited to be even a small part in getting the much needed funding to advance research and therapies to try to stop that dang monster CF from destroying the lives of too many families...I had some much needed quiet time this evening and really wrote out whats on my heart. Our journey. our struggles. our passion. our drive. our goals. our ambitions. i am pleased with the outcome. i believe my speech is complete! although, being the type A that I am (NO! not ME!) I will read and reread it and maybe change things around a bit or what have you. but the nuts and bolts of it is just how I would want it to stay. An amazing opportunity.
I have to say that sweet Conner man is doing so well these days! He's really perked up since making it home from his wish trip to Hawaii!!!! His oxygen needs have lessened, his smile is back, his zest for life is back, and yes even the fighting with his brothers is back too! that is a sound that i used to dread!!! but let me tell you, after weeks of seeing him just slumped over, not even enough energy to talk or fight...i WELCOME the shift! Bring on the fighting! I am just so glad that he can breathe again! I took him to clinic on Monday and they didn't even have us do pft's or check his o2...that was just a relief. Not sure about you, but i HATE numbers. Especially when they're bad numbers. I don't want them floating around in my brain causing me more greif then Im already dealing with. Phew. Conner will now go to CF clinic AT LEAST every 2-3 weeks they want to keep a very close eye on him. Unless he gets sick, in which case we take him straight in to be admitted. We filled out the forms to extend his home tutoring thru the school district. that was a hard decision to make. first and foremost I want my child to be healthy and safe. but at a very VERY close second i want my child to have an AMAZING quality of life. so to make that choice to not risk his health by sending him into germville was a very tough one. but i really feel it was the best decision given his current health status. we will make arrangements for his friends to come to our house, or maybe he can go to school when they have special activities like library day or something...it's all about quality.
today was also a very bittersweet day for me. i got his paperwork turned in to the local DMV office and got his disabled parking placards. the handicapped parking. ugh. thats a tough bullet to bite. who would've thought that would be so difficult. I was fine talking about it before they actually put them in my hand. i wasn't prepared for that today. i thought i was just dropping off paperwork...but she gave them to me right there...and said "oh gosh honey, this little guy is so young. bless his heart. best of luck to you" and that was IT! done! my heart sunk. my eyes stung. reality sank in.
cf...i hate you!!!

It's that time of the year again, January is almost to a close and my mind has shifted gears to my favorite season.....Great Strides walk for Cystic Fibrosis season!!! Our walks take place across the nation in the month of May (and a few in early June). Over the 5 years that we've participated in this walk, we've raised well over $10,000 for CF research and drug developement, but this year I have bigger ambitions.
This year my goal for our walk team is to raise AT LEAST $4000 for CF research, and also to have Conner Jones Teams branch out across this nation! Already we have teams started in WA, CA and NY!!! Each individual team will have their individual and team goals. We are reaching for the stars this year!
Please consider donating to our local walk, which is in Vancouver, WA May 8th this year. Please also consider joining our walk team here locally, and if you're far away please consider starting a Conner Jones team where YOU LIVE! It is so easy to do! I am here to help all of you along the way!
Lets make this the BEST year for Conner Jones Team EVER!

to join my local team and/or to donate click this link
http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=6584&idUser=134723

to start a Conner Jones team and recruit team members where YOU LIVE click here
www.cff.org/greatstrides
(and search for the walk nearest you and register a new team and name it Conner Jones team)

Lots of love and support!
Please pass this along to everyone on your contact list and lets make this a very great fundraising year!!!

Love
Sarah Jones
Conners momma

Conner's Wish trip video...

http://www.onetruemedia.com/shared?p=a3ec43e4b480795a5567d9&skin_id=701

The trip of a LIFEtime

Gosh...I'm not even sure where to start. my heart is swelling with the love that was shown to us this past week, that will live with us our entire lives. There's simply too much to tell. The stories of generosity, support, and love from family and complete strangers alike. This trip far exceeded our greatest hopes and Conner's greatest dreams. Pictures really say it all, and we took, almost 900 of them on our own cameras. But the grandparents took more as well.

He saw whales, whales everywhere...he saw lava...he went in a helicopter, he went swimming with the dolphins and fed them fish, he received a lei greeting, he swam in the ocean and pools, he saw a hula show, he went to an authentic luau and saw the fire dancers, he saw his dad and mom do the hula on stage, he saw his papa attempt to blow a conk shell to start the luau, he saw what humidity does to his baby brothers hair (CRAZY!), he went in the cockpit of the hawaiian airlines plane and learned to fly, he got the pilots REAL pilos wings (not fake ones..his own real one), he saw a mongoose, he saw plenty of beautiful flowers, he saw black sand, he saw spinner dolphins and bottlenosed dolphins, he went on a whale watching cruise, he saw the entire island by helicopter, he joined the thousands of locals and travelers who write their name in the black lava with white coral rocks by writing out his name to be there for years to come, he had a Hawaiian pastor pray a healing blessing over him, he left his footprints in the crystal white hawaiian sand, he buried his dad in the sand at hapuna beach, he picked out gifts for his friends, he had time for lots of hugs and kisses for his family, he saw water as blue as he'd ever seen, he saw Gods beauty and grace everywhere, everyday, and every minute.

I can't even begin to say thank you to those who helped us get there by prayer, support, money donation and grace. Conner received over $530 from people we met on the island, when they met him and heard of his story and struggle. People were just so generous to our family. Their generosity made his wish of swimming with the dolphins come true, another persons generosity allowed him to buy the hawaiian airplane he had his heart set on, another generous gift allowed us to be able to go to the authentic luau, another gift bought us meals for the airplane and tonight for dinner just the 5 of us. he was able to get and do everything he wanted. Yet he shared with his brothers and family. His heart is so generous.

There simply aren't enough words in this world to describe the way I feel about this trip. The way we all feel about this trip. How greatful I am, how I am the luckiest woman in the world that I was chosen to be his mother, how blessed I am to be able to hug him and kiss him whenever I want to...to know he's ours, if even for just a moment longer.
No, I'm not a dancer, but to fulfill his wish of me doing the hula in front of an audience was a no-brainer for me. I got to see him smile because of that. Who cares that I looked ridiculous. To see the smile on his face for getting to bury his daddy in the sand which he's been talking about for weeks was heart warming.
Yes he struggeled a bit to breathe, sure he wasn't feeling very well for most of the trip, and of course he missed out on some amazing island food because he was too ill to eat but oh my gosh...he did it! what an amazing journey. He got to do it! and he LIVED every minute of it to the absolute extent of his abilities. He cherished it. He loved it.

there's simply just too much to say, too many stories to share. and simply not enough time or even the words to speak it aloud...just know that God was ever present on this trip, I felt him from the tips of my fingers to the tippiest of my toenails. He made this possible. He brought these amazing experiences to reality and planned them out so perfectly. because he loves us. because he's there for us. because thru all our struggles these past years he's proven to us without any doubt that he infact, will NEVER leave us. and we, as a family will never be the same again.

simply amazing

Aloha

WE leave for Conners make a wish in 12 hours....we are thrilled. please hold Conners health in your prayers so he may enjoy this trip and pray for safe travels. I hear the whales are quite active right now, so we're thrilled he'll get his chance to see them and the volcano with lava!

bless you.

hawaii here we come!

The blog I never wanted to write...

Hello! I hope you're doing well tonight/today as you're reading this, I hope everyone in your home is healthy and this new year is bringing you boundless happiness, good health and lots of energy. Life for us has been very difficult this past year, and even more so this past few months. I felt its important to bring everyone up to speed on our sweet Conner, so much has changed.
Conner has still been fever free since we took him off the IV zosyn, and that is wonderful news. Yet, the last two days he's just kinda looked not right. He's pale not eating very much, and his breathing is still noticably difficult, harder, causing his oxygen needs to increase. I spoke with Dr Wall about it today (his cf doc) and he pulled me out of the room to "walk" and he pretty much said that it's just obvious that what we're doing for him isn't enough, it'll never be enough. He doesn't ever really get better anymore w/o IV's, doc says the IV's are just kinda keeping him alive, and no longer fully getting rid of his lung infections. We discussed conners make a wish trip coming up this saturday and he said that some of the other CF docs don't really want Conner to go, they think he's too fragile and this trip might be too much for his health to handle. But both Dr Wall and i agree (and brad too of course!) that this is his one heart felt wish. he talks about it nonstop. and he deserves this trip. his life is no longer about quantity, it's about quality. Dr wall said that if we had any shot in getting him to hawaii it would have to be now, because he doesn't think conner may have too much more time with us. It is very devestating and heartbreaking news. So even though Conner's not back to his old self yet, we're discharging him from the hospital tomorrow am (thursday), we will do oral antibiotics to hopefully tide him over for this trip, we have plenty of oxygen for hawaii, and we're going to have Conners wish fairies come to our house for dinner tomorrow night to present him with his plane tickets and travel itenerary. help to cheer him up. And saturday we will board that plane and even if he only gets there to see the whales and then his health turns, you know what? at least he got to see them, his one true wish. But I truly feel it'll be the relaxing time that he wants it to be. Since my dad and rose will be heading home the day we're heading to the island, the doc and i felt strongly that we have someone there to help out, not only with bradyn, but to be there incase conner gets worse and needs to go to the hospital there, so we have support and help with the other kids as well. I called a dear friend to explain what we're facing today and within 10 minutes she had collected the $450 for my moms flight to hawaii to be with us to help. amazing. it means so much to us how our community and family and dear friends have bent over backwards for us. for praying for us. for letting us cry. for keeping our minds off things. we've been truly blessed.
Dr wall and I also discussed that if we need them anytime, of course i know the oncall number and they're their 24/7 for us, and if we get home from hawaii and it took its toll on his little fragile body i can call and we can bring him back in for more iv's. they've been very compassionate and caring to us.
this is a very hard letter to write, but necessary given the current circumstances. Doctor did not and will not give life expectancies or timelines because cf is so unpredictable when it attacks full force, as we've learned much too well these past months. we are going to go and make memories and i pray that god will allow us some more time with Conner...i'm not done loving on him yet.
Please understand that this was horrific to write. It's even more unimaginable to say these things aloud and talk about them. So please for the time being, please just give brad and i some space with this. we can't and don't wish to talk about it. this is too much to bear right now, and we're still having to put on brave faces for our Conner so he doesn't get scared or give up his fight. And i'm trying my best to keep my attitude positive, yet realistic. I still hold out hope.
this is a letter i wish i never had to write. im glad it's done now.
Love to you all.
Sarah

Aloha!

Halleluyah i thought this day would never come. Conner has been fever free for 29 hours and his rash has gotten much better. So looks like either tomorrow or Thursday we are going home, YA NO MORE HOSPITAL! (well for awhile anyway!) And since the fever went away after they stopped the IV Zosyn, we are assuming that was the culprit. Doc says that can happen at anytime, even a drug you use frequently. I shouldn't say with any drug, with specific drugs, like zosyn it's in the pipercillin family which i guess is famous for these drug fevers. So no more zosyn or any of it's cousin meds either! ;)
We've got Conner's make a wish trip scheduled for Saturday thru thursday then daddy will have the rest of the weekend to be home with us, for some much needed family time!
I am well aware that Conner is not at 100% for this trip. We are taking along our FAA approved oxygen concentrater with lots of spare batteries fully charged, and if you've been following me a bit, or have known us awhile you'll know that we do realize that Conner may be readdmitted soon after his wish trip. It seems anymore he can't make it past 4 or 5 days w/o iv's before he gets another infection, which is so frustrating.
I've learned to respect CF greatly. I've also learned that having mrsa and pa is really not a good combination. it can make your body weak and with no reserves to battle lung infections because your body is constantly fighting anyway. But I also learned that i am hopeful. And hopefully optimistic. This time about a week ago, or maybe the week prior who knows anymore, I was feeling pretty beaten down and even "raised my white flag in defeat" but no more. I've learned that those feelings will come and go, you can't be 100% positive, 100% of the time. Just as long as you realize that you can't stay in that negative, frustrated space for too long! So game on CF, it's GO TIME! I had my moment of doubt, but no longer. Meet the new and improved Sarah, and get ready to be TAKEN DOWN! (oh and by the way, PA and your bff MRSA, you're up next!)

NEW support forum/blog/informational site

The new Cystic Life site is up and going...I just registered...you can too! Click here you don't have to have CF...just know a person/family affected and HELP SPREAD THE WORD!
See you on the forum!
Sarah

CF may have won this battle, but NOT the WAR!

Well here we are, still sitting at Doernbecher Childrens Hospital in Portland OR....still on IV's... still having 104 fevers...and still NO ANSWERS! Everything comes back clean. Looks like Conner is mystery man these days. He has had these high fevers for 5 days now. It has gotten very old! Conner's sputum came back with pseudomonas and mrsa. and i just KNEW that once they had us end his TOBI nebs that lovely PA would come right back...well so it's taken a few months but yep it's back. I hate this combination. The inhaled Gent that he's on covers both mrsa and PA so we will not be going back to Inhaled vanco i believe. They have not told me yet if we will be restarting TOBI every other month again. I hope not. That would make his treatments so long, don't get me wrong we will do them, we don't skip treatments, but gosh it's so much easier to not have all of these extra neb treatments. At least now he's not in school (i've pulled him out since early October for home tutoring thru the school district to limit his exposure to the h1n1 etc) so we have no specific time we need to get treatments done. But i do have 3 children that need me. They need all of me. We don't get much time away from the hospital or clinic these days so when I'm home I try SO hard to be there for my other 2 boys. I miss them to peices when Conner and I are away at the hospital, and i KNOW they miss me too. Little boys need their mamas!
So Conner's on Zosyn IV, Tobi IV and Zyvox IV and theyre using inhaled Gent to fight the lung bugs too. I sure hope that these start to make a difference soon so we can get outta here.
Speaking of which...we were scheduled to fly out tomorrow for Conner's make a wish. That has been postponed. We are shooting for a departure date of Wednesday. I hope so much we can get there this time. He has to be rid of these fevers. Doc says his lungs sound so much better then they did on admit last week. I'm sure they do because last night he threw up a TON of lovely mucus from his lungs (YA CONNER!)...so the fever is our last hurdle.
Peds pulmonary doc changes tomorrow, but the doc we had this week relays all thats gone on to the oncoming doc...and of course we know all 3 CF docs very well. So Dr Wall will be on board to get us outta here as soon as possible to complete Conners one heart felt wish to go to Hawaii to fly in a helicopter to see the volcanos and lava...and to go on a whale watching trip...
we'll get there i know it.
but dang that CF for once again foiling our plans. We never make plans in advance anymore, because Conner's health is just so fragile anymore, but you have to plan a date for Make a wish of course and look where we wind up. So the lesson in this is...to really live ONE day at a time, and not to worry over tomorrow...for today has ENOUGH worry in itself!!!
I hope to write soon to say that we're going home!!!

104.5 Fevers means No Make a Wish on Monday

Conner has been on Iv's nearly 2 weeks now. He has been in the hospital since Monday. Since Wednesday night he has been spiking fevers ranging from 102.7-104.5 and the docs are stumped. they've run tons of tests. tons of cultures. 2 xrays, cbc's, blood sugars, viral cultures you name it. no answers.
His sputum is still in the preliminary status and it's showing that he's growing a gram negative bacteria....which is quite interesting. Usually MRSA is our dear friend in both the prelim and the final culture. I know my BFF mrsa will be in the final but we're very curious what this new bug he's growing is. I feel it's pseudomonas again. What a horrible combination, PA and MRSA. I hope that I am wrong. Conner's current IV's both cover gram negative bacteria so he's covered, it's now just a wait and see whats actually in there.
His make a wish was scheduled for Monday-Saturday in Hawaii, the big island. Well, unless these fevers break like NOW that won't be happening. I've been in contact with his wish fairy and his contact at MAW and they ensured me that he can get there, they can make it happen with 24 hours notice. So we know we will get there. we just don't know when.

I am beyond flustered.
I am beyond exhausted.

I'm ready for this nightmare to be over with.

Familiar with Genomycin?!

So Conners dr wants to switch him from inhaled vancomycin to inhaled genomycin for his frequent infections. we tried it inpatient today and phew...i got the WORST headache. during that RT session though he also did his hypertonic saline, which usually doesn't bother me at all even sitting right next to him, so I don't know if it's the combination of the two meds or if it's just the genomycin...
anyone have similiar issues?
We stopped his IV vanco as well and changed it to IV zyvox so we'll see if that works. we've also switched him from VEST to PEP and that seems to help him move more mucus.

make a wish in 6 days....

we shall see if this med switch is enough!!!

BACK IN THE HOSPITAL!

Well dang it anyway, Conner was readmitted to the childrens hospital today, his CF lung infection got worse despite home IV's and orals. Took my sweet time bringing him in, didn't check him in until 5pm. We were JUST here!!!! We were in the room RIGHT next to us! So doc got a chest xray, the usual blood for all the usual labs and we've switched his iv meds around in hopes that it will work to get him better and get outta here so he can go to hawaii next week for his make a wish trip!

we've changed his breathing treatments around also.

I'm hopeful it will be enough.

I'm just kinda frazzeled!!!!

Extra prayers for Conner

Conner is getting so excited for next Monday....thru Saturday actually! It is his Make a Wish trip to the Big Island of Hawaii for 6 wonderful days where he will get to ride on a helicopter to tour the island so he can see real lava and volcano's and to go on a whale watching trip since he loves whales. We are getting excited with anticipation as well. Conner's make a wish send off dinner is this Tuesday evening at his favorite restaurant, Izzy's (HA!) where his wish fairies give him his plane tickets, spending money, and itenerary. This is his most heartfelt wish and I'm forever thankful that Make A Wish was there to help us get Conner his wish a reality...

However...he's been on home IV's a week now, we planned to start them to make sure he's in the best health possible before we left on his trip, but he wound up needing them anyway, so it was kinda perfect that he started them when he did. But over the weekend he has gotten worse. Thick, nasty cough that we've grown so accustomed to has come back to test us. His oxygen has plummeted to around 86-89% so he's been requiring oxygen most of the day now as well as when he sleeps. He even spiked a fever on Friday night. This same thing happened just a few weeks ago and it put us back in the hospital just before Christmas. The timing couldn't be worse since his hawaii trip is in 7 days...
I will be calling CF clinic tomorrow, maybe take him in to see them or see about also getting a home oral antibiotic to help him fight this new infection so we can make it on our big trip. Of course make a wish always told us the wish can be rescheduled, but I don't know how far in advance it'd have to be changed, and also...I don't want CF to win. Seriously, it is taking my son's health, our families peace, our son's childhood, and now it wants to take Conners biggest wish away too!!! unreal!!!
Please keep him close in prayer, that he can beat this infection and make it on his big trip.