Day of surgery

6/30/14

About 12:30 PM

They just came out & said Alexa's pancreas is out & they have taken it to the lab & are extracting the islets. They are now putting her back together. Maybe she will be done much earlier than expected!!

This is from my Dad. I am so grateful for him & his wife Alba!

We’ve all been taught the true doctrine of faith by observing how Uncle Ty, Aunt Malinda, and Alexa have been instructed in many their struggles with “my will” with “Thy will", and finally aligning the two with trust in "Thy will".

One of the principal participants these last couple of years, and especially on this day, has been Grandma. She would not leave Alexa’s bedside, doing what she can, f...rom where she is to be with and strengthen her beloved granddaughter.

The faith we have been taught by this experience is a kin to our Savior, Jesus Christ, when he heard that his beloved Lazarus had died. He thanked his Father for giving him the power to raise Lazarus even before he did it.

During this special day we pray in gratitude for the blessing as though it has already happened. We’re all settled that “His will” is full of mercy, and humbly bow ours to His.

 

About 5:30 PM

 

Dr. Chinnakota just came in & said we had 8000 islet yield!!!! The amount hoped for is 2500 - 5000 so we are way above!!!! He put 95 percent in the liver & the rest in the belly. He said everything went perfectly!!!! Now we wait till she starts coming around a bit & they will call us in to be with her. I believe our prayers are being answered:) Poor Dr. was on his way to do a liver transplant next! I don't know when he sleeps!

 

10:45 PM

 

We are settled in the NICU & Alexa is hooked up to so many tubes that the pole won't hold anymore, as you can see from the pic.  They told us this about this before hand.  They even brought in a doll with all the tube attached to her & explained to Alexa what each tube was for.  She really hates the breathing tube but when they put it to where she was breathing on her own it keeps going off so I think they are going to have to leave it in for now. I think she is pretty comfortable though.  She has 2 pain blocks in her back, some continuous pain med, plus a pump she can push.  They  have to check her blood sugar every hr so she gets a finger prick.  We will get thru this.  Ty & I are beat.  We will try to get some rest tonight & let the nurses do their jobs.  We feel like our prayers are being answered!!!

Alexa's TP/AIT Surgery

Alexa is back in surgery now.  Actually she went back about 7:30 & it is now 9:00.  It’s taken me that long to get myself together & figure out this new computer.  Ty bought me a new laptop for my birthday!!  When he got there yesterday & we got back to the apartment I jokingly asked him if he had brought me anything.  I was so surprised when he said he did & he pulled a beautiful blue laptop out!  I was happy but not as happy as I was to see him.  Anyway, Alexa had a very bad night, she had attacks all through the night.  Luckily Ty was there & got up with her cuz I sure was tired.  They 1^st took Alexa back alone to have her change into her gown & get her vitals, etc.  As Ty & I were sitting there with the TV on I suddenly started to panic!  I have really never had a panic attack but I guess that is what one feels like.  I immediately pulled out Ty’s ipad & pulled up my “special scripture”, D&C 98:1-3 & read it over & over & started praying.  I knew we were doing what needed to be done but really, when you think about them removing her spleen, duodenum, pancreas, etc. it is pretty overwhelming.  How does one really LIVE without all of those organs.  Then I had to read the scripture & remind myself that nothing is impossible with Heavenly Father!  Then they called us back & I had to be strong again.  After they took her back & we went back out to the waiting room I broke down again & was so grateful to have Ty there by my side so I could cry on his shoulder.  I wish every one of you could be here with us but it is very comforting to know that you are all here in spirit.  We feel so much love & support!!!!  We will be fine.  We are fine now.  I just needed to cry.  Now that I have posted this we will try to sleep since she will need us later.  They told us this surgery will be till 8:00 tonight, maybe shorter, maybe longer.  We are praying that with Heavenly Father guiding Dr. Chinnikota’s hands the surgery will go smoother than he has ever imagined!!  We love you all!!

1 Day before surgery

6/29/14

Dear Everyone,

Here we are finally, 1 day away from surgery & boy what a week it’s been!  I feel like we’ve been playing “musical hotels”.  Tues, after getting checked out of the senior home & then getting checked into the lovely Super 8 motel, my arms felt like spaghetti noodles from carrying all that stuff.  We were going to go to the famous Mall of America but after reading about it decided we needed to wait till after surgery & Alexa was feeling better since it is a place we would want to stay for several hrs & Alexa wasn’t feeling up to that.  We decided to just go shopping close by but 1^st went to eat at this Mexican restaurant that was pretty good.  I don’t think it was the food that made me sick but just 1 of my regular attacks but my stomach wasn’t in too good of shape all afternoon.  We decided to go shop for some Sunday clothes for Alexa since she forgot to bring hers.  We went to Dress Barn & it is now Alexa’s new favorite store.  She found 2 really cute dresses there & I was so surprised at how long & modest they were.  They were a bit expensive though but she had to have them.  She got a size 4 & it was still a bit big on her.  I’m figuring she will start putting on some weight after the surgery.  I will have to take pics of her if we are able to go to church today.  After that we went to Famous Footwear next door & she found some cute shoes on clearance, then I had to get back to the motel.

On Wed Alexa had 1 apt with the pain dr again.  That one was rather interesting.  He had her lie on the table & relax while he tried to hypnotize her.  I sat right next to him listening to his soothing voice & a few times almost went under myself, haha!  I kept wondering if he’d ever had a parent go under while talking to their kid, I would imagine he has.  He took Alexa thru a nice beautiful forest that was supposed to relax her even more & then to a stream of water witch was supposed to make her completely relaxed to put her hand into it & feel the cool water.  He went on for about ½ hr & I really thought Alexa was out but then when he told her to open her eyes & he asked her how that experience made her feel she said her mind kept wondering & it was too long.  He had recorded it & gave her a couple of other CDs that are supposed to help with other things.  After we were done there we got something to eat & looked for a Ross so I could get some bags on rollers.  I had packed some things in a box & wanted to change it to a roller bag so it would be easier to move.  Ross has great prices on luggage but found out they don’t have one here so we went to Burlington Coat Factory.  I found a couple of great deals there. 

Thurs morn Alexa had an apt at the ortho to get a fake tooth put back into her retainer.  I think I told about the fiasco with her crowns for her implants in another letter.  Well, the 2^nd crown broke right before we came here so we had the ortho just put a fake tooth in her plastic retainer since we didn’t have time to wait for a new crown till we got back.  On Tues Alexa soaked her retainer in that effervescent fizzy stuff that you clean dentures in like she always does & when she got it out the tooth was completely dissolved!!!  She then told me that they make the tooth out of glue!!  I called Kaia, the girl that I had talked to before that Craig Parry gave me her #, & she told me that there was a guy in their stk presidency who was an ortho & she would give him a call to see if he would help us.  She was so nice!!  She called & did everything for me!!  We are so lucky to have her as a contact here!!!  Dr. Hicken told us that their church starts at 1:00 & is over in Bloomington, closer to the airport.  My plan is to pick Ty up from the airport & have his Sunday clothes with me & then go straight to the church & he can change there.  I was so happy Alexa was able to get her tooth put back in, it’s so embarrassing walking around with an “oakey,” not that she really cares!  After we finished there we went to Panda Express to eat & then shopped at Kohls for a bit before we had to go to the hospital to meet with the endocrinologist.  She is very nice & told us exactly what to expect after surgery as far as insulin shots, etc.  They will take her pancreas to a lab at the Univ hospital & run it thru a process with some chemicals to liquefy it & then take the islets back & inject them thru a portal vein into her liver.  She will have to take insulin for a couple of months at least so as not to stress the islets & give them a chance to start working on their own.  While we were there I got a call from Paula at Ronald McDonald House saying they had a room for us!!  I had called the day before & she had told me it would probably be about 4 – 5 days before she would have a room.  We didn’t finish at the hospital till about 4:00 & then went over to check out the room.  It wasn’t just a room, it was an actual apartment!!  They have a new part that they have just remodeled or added on that is brand new & just finished so we are the 1^st ones to stay in that part.  This place is absolutely amazing!!!  It is 75,000 square feet with 13 kitchens, several laundry rooms, lots of game rooms & visiting rooms with comfy couches, chairs & TV, a nice gym & an indoor basketball court.  I was soooo excited & I knew Ty & Tyson would be happy about the BB court!!  The only prob was that I had used that stupid Hotwire to book our motel room & had to pay in advance & there were no refunds so I was losing out on 3 nights.  We decided to stay in our motel 1 more night since it is about 15 – 20 min away & check out the next morn when we have to come back to the hospital.  While at RMH we ran into Tammy, Kayli & Bailey, our friends from Facebook who have gone thru this surgery & we visited with them for a bit.  It will be good to have people who understand what we are going thru that we can talk to. 

Fri I got up early as usual & went down for the free breakfast at the motel as usual.  It’s not a bad breakfast but there are signs all over that say not to take the food back to your room so I always have to sneak it back since they only serve breakfast till 9:00 & Alexa doesn’t even get up till 10:30 or 11.  We had to be back to the hospital by 11:30 so after breakfast I started loading everything back into the car again!!  It was way easier this time though, the luggage on rollers made a HUGE difference!!  We got to the hospital & they did the blood work, which Alexa always loves, haha!  Then they took a chest x-ray & we grabbed some yucky lunch in the cafeteria.  Then they went over the bowel prep she would need to do & how to shower the night before with some special soap they gave us.  Then we had to wait on Dr. C which took forever!  We didn’t get out of there till about 4:00 & went straight to the RMH to check in.  There we were again, carrying all our stuff back in!!  It was so nice to get settled in there & everyone was so nice.  They even have a dog!!  Alexa was happy about that.  His name is Jerry & he is a Laberadoole & is adorable.  This was also the day Alexa was to start a low fiber diet, no fresh fruits or veggies, no nuts or popcorn, etc.  Not really very tough for her.  After we left there we went to Target to get a list of stuff we needed.  Alexa got so sick & went out to the car to sit.  I have never liked Target!  They didn’t have half of what I needed & it was so expensive that I ended up just leaving my cart there & decided to go to Walmart the next day.

Sat was an extremely busy day for me.  I decided to start Jenny Craig while I am here for several reasons.  I need extra energy to care for Alexa is the biggest reason.  I have talked to several of the ladies here who have kids who have had the surgery & will have to set my alarm several times during the day & night to check her blood sugar & give meds.  Also, I don’t like the hospital food at all.  I figured this would be a perfect time to start since JC is only 10 min away & I don’t have to cook at all for anyone right now.  They took us on a tour of the hospital & there is actually a fridge with a freezer in our room so I can keep my food there easily.  I had my apt at JC at 8 AM & it is in a city called Roseville that is gorgeous!  All the houses have perfectly manicured yards.  They’re not huge houses, just small old ones, but everything is so pretty & the trees are HUGE!!  My JC counselor was…..interesting, to say the least.  He is originally from San Francisco so, there you go.  I’m pretty sure he was totally gay but he was also very nice & supportive, I actually liked him.  I’ve never had a guy counselor before so this is pretty weird.  Well, JC just happened to be right next door to Old Navy & they happened to be having a big sale.  They opened at 7 AM & all flip-flops were only $1.  I got a few of those & some school shirts for Tyson & some clothes for Alexa.  After that found a Walmart & they had everything I needed at a much better price.  Then I found an IHop & got Alexa her pancakes for her “last meal.”  The nurse at the hospital had told her to eat a nice breakfast since she wouldn’t be eating anything for a couple of months after that.  She was happy I brought that back.  When I got back I got to work unpacking & trying to figure out what we needed to pack to take to the hospital.  I also got busy doing laundry.  They haven’t finished the laundry room close to my room yet so I have to go down 1 flight of stairs, clear to the other side of the building, down another flight of stairs, to get to the laundry rm.  The nice thing is it is right off the gym so I was able to work out while doing some laundry.  At noon Alexa had to take her laxative pills & stop eating.  She is now just on jello, popsicles, no pulp juices, etc.  She pretty much doesn’t like any of that so she’ll probably waste away to nothing.  I also had to wash all of Alexa’s blankets & some sheets & towels.  They told us if she brought her own blankets to the hospital they had to be freshly washed & she has these 3 huge ones she is insisting on bringing.  They bring her comfort she says!!  I was very busy the whole day running back & forth to the laundry rm & settling in.  They have volunteers come in every night to cook dinner for us & they make these wonderful meals.  We had grilled shiskobobs (sp?) with chicken & yummy veggies.  I am getting so spoiled!  Poor Alexa had to start drinking her Gatorade/ Miralax cocktail at 4:00.  They were very specific about how we had to do it.  She was to drink an 8 oz glass every 15 – 20 min.  Even if she was sitting on the toilet she had to drink it.  Also if she got too nauseated & threw up she could have a 15 min break & suck on some hard candy for a bit & then had to resume drinking.  I felt so bad for her, she got so terribly sick!!  She had 2 more glasses to drink of the 64 ounces & just couldn’t keep any more down, she started throwing it all back up.  I was so worried since she hadn’t started going yet & went out & talked to Lisa about it.  She told me not to worry & said that it may not kick in till the next day.  I was so glad I could talk to her!  Well, it didn’t wait till the next day, she has pretty much been up most of the night.  I’ve been up since 2:45 & decided to just write this letter, haha!  Ty freaked me out & called & told me he couldn’t find anything confirming his plane ticket for the next day.  It was hard for me to deal with that right then since I wasn’t able to get internet in my room & had to go to the living room downstairs.  I felt bad having to leave Alexa when she was feeling so bad.  He finally found it though! 

Well, the fam had been partying at home while we’ve been suffering, haha!!  They all went on a nice camping trip without us!  When I told Alexa they were going camping she said, “What? They are going camping without us?”  Not only that, they went camping while she was suffer thru her bowel prep!!  Ty & Tyson stayed in Wyoming later than they thought & didn’t get back till Tues, just in time for Ty to do payroll.  He spent most of the week trying to get caught up on bills & getting things transferred to Dropbox so he would have access to it here.  I tried to get him to get a new laptop but he wouldn’t do it.  It would have been much easier.  They had fun camping with Chels & Tonya & Tiff’s families.  Shayla didn’t go cuz her & Melissa went to a cabin that the singles ward had reserved & then went home on Sat & went to Hale Ctr Theater & saw Mary Poppins.  I got word that they had a great time.  She has to get up at 4 Am this morn to take Ty to the airport to catch his 6 AM flight.  I don’t know if our plans to go to church will work out since Alexa has been so sick.  I am hoping we will be able to go there & find someone to help give her a blessing but if not I will have someone come here tonight.  I can’t wait to see Ty!!  I feel like we haven’t seen each other for months!!  Tonight Alexa has to take her shower with the special soap & then dry off with freshly washed towels & put freshly washed PJs on & sleep on freshly washed sheets.  In the morn she has to get up early enough to take another shower with another bottle of the special soap right before we go & have to be there by 5:30.  That will be fun!!  The surgery is supposed to take about 9 – 12 hrs but I have read about some people’s taking up to 17 hrs.  It will be a verrrrrrry long day!!  The whole ward & several others are fasting for us today & lots of others fasted last Sunday.  I am so amazed at how calm I feel about the whole thing.  This is what we are supposed to do.  I wish with all my heart it was Heavenly Father’s plan to heal her without this surgery but I also know she will be fine with the surgery.  Dr. Chinnakota is a very good dr & I know that with Heavenly Father guiding his hands he will do this surgery perfectly, just the way it needs to be done.  I have never been so grateful for so many things in my life.  I feel so very blessed!!  The people here are the nicest & will bend over backwards to help in any way possible.  They don’t charge us a thing for staying here & we don’t even have to buy any food.  There are snacks everywhere you look & the fridges are loaded with anything you can imagine.  There’s loads of Girl Scout cookies covering a whole counter & huge baskets of different kinds of snacks.  Tyson is going to be in heaven when he comes but it’s not so great for someone trying to diet!!  I am in a new part & lots of bugs need to be worked out.  I feel funny telling them about it but if I even mention it they get right on it immediately & try to help me!  I really am so grateful!!!  Well, I guess I’ll try to go back to sleep.  I love all of you so much, it helps so much to know I can call any of you just to talk if I need to.

Love Malinda/Mom           

1 Week before surgery

6/23/14

Dear Everyone,

Well, Alexa & I made it to Minnesota finally!  I am totally amazed at how much Heavenly Father helps me!!!  While I was packing things Wed & Thurs I kept having the strong impression that I needed to go downstairs & get my small workout fan to pack.  I ignored the impression several times & continued packing other things.  I had prayed that I would be able to have a clear & alert mind & not forget anything that we would need.  On Thurs as I was talking to Shayla I told her that I kept having this strong impression that I needed to pack that fan & she said, “Well, you’d better go right down & get it.”  I finally did it right then & got it into the car.  We took off around 8:00 AM Fri morn & made it safely to Ty’s motel in Wyoming.  Marvin & LaRee were there working also so we got to go out to the BIG fancy restaurant there in Lovell, Wyoming with them.  The food wasn’t much good but the company was!  It was great to see Tyson & Ty again even though they went back to work after dinner & didn’t get back to the motel till 10:30 or so.  I was already asleep.  The bed was extremely hard though so I kept waking up all night.  I even had my latex mattress pad on it & my back hurt so bad the next morn I could hardly walk!!  I felt so sorry for Ty & Tyson for having to sleep on those horrible beds!! 

Alexa & I left Sat morn & made it to Bismarck, North Dakota where we had a room reserved at the Kelly Inn.  The bed was the softest, most comfortable bed!!  I really slept great that night & didn’t want to get out of bed the next morn!!  We didn’t leave on Sun till about 11:45, mainly cuz I thought it was only about 4 hrs to Minneapolis but it ended up being about 7 hrs.  By the time we got to Minneapolis the traffic was at a standstill.  I thought that was really weird that it was so bad on a Sunday till I remembered the nurse talking about how bad the traffic is every Sunday night coming into the city because of all of the people coming back from their cabins.  The drive was absolutely beautiful the entire way after leaving Wyoming & I kept thinking about how much Ty would have enjoyed the drive.  He loves to see beautiful scenery just like my Mom did.  Everything was so green!!  When I got here I found the place we were going to stay.  I had reserved a room in a senior care center for the week.  The hospital had sent me some info about different places we could stay & their name was on the list.  They rent out some rooms to people who are in need & having surgery at the hospitals.  It was $150 cheaper than anywhere else & was a 1 bedroom apt fully furnished & everything.  I had a really hard time finding where to go to get my key since the place was like a maze, it went on & on!  I had parked across the street by the park & Alexa was waiting in the car.  When I finally found the front door there were lots of old people out there visiting & just sitting.  This old mad in a wheelchair yelled to me & said, “Mam, I need you to come here.”  I just told him to wait just a minute & went into the building.  The lady at the desk had an envelope that had my name on it with my key inside it with instructions written on it to have security come & show me where my apt was & where to park.  She called security & this young guy came & we went out the door so he could show me where to park.  The old wheelchair guy yelled to me again & said, “Mam, I need you to come here!”  The security guy said, “What do you want, Bill?”  Bill then told him he didn’t want anything from him but wanted me to come to him.  I started laughing & the security guy just told Bill we were busy right then & he would come over to see what he wanted after we were done.  Wow, I was only there for a few minutes & already had “men” hitting on me, hahaha!!  I drove around to where I was supposed to park & the guy met me there & showed us where our apt was up on the 6^th floor.  As soon as we walked in Alexa was crinkling her nose & said it smelled like “old people!”  It was very clean though.  The TV was very old but did have cable hooked up to it even though it didn’t work well.  We didn’t know what the wifi password was & that was another bad thing for Alexa.  She really didn’t want to stay there since it was so hot in there also.  We turned on the AC unit & decided to go find something to eat while it cooled down.  We ate at Old Country Buffet which was not very good & way too expensive.  We drove to a couple of hotels in Bloomington, which is where we stayed last time we were here, but they were completely booked up.  We came back to the senior ctr & I went down to their computer ctr & tried looking up some different hotel options but found that it would be way too expensive to try to get one that was any better than this when it was this late.  Well, this is the amazing part of my story!!  My bedroom was so dang hot that I just knew I wouldn’t be able to sleep!!  Well guess what?  I had packed my trusty little fan!!!  With my fan going it made that bedroom just right & I slept just fine!!  Heavenly Father is just amazing!!!  He helps me with even these little small things that really don’t matter all that much, just makes things more bearable!!!  He really does listen to our prayers & helps us with whatever we ask for if we are doing our part!!   I have now decided that this place is really perfect for us.  Alexa was really worried about the neighborhood, which really isn’t that great.  But the building is pretty secure.  You have to have a little thing on your keychain that will let you into the building & there is lots of security around.  Plus it is really close to the hospital so I got up this morn & finished carrying our stuff up to our room.  I think once we get the internet working Alexa will like it just fine too. 

I was sad we missed Shayla’s bday on Sat but I know she was well taken care of.  Dana planned a lunch for Sat which I think Chelsea, Tiffany & Tonya went to.  That night I had given our tickets that we got with our pass-of-all-passes for the play Cinderella at the Scera outdoor theater to Chelsea to take Shayla to.  Melissa & Shannon went also & said it was really good.  Also Melissa moved into our house to stay with Shayla while we are gone so I feel much better about that.  There have been a few break-ins around our area lately so I was a bit worried.  Ty & Tyson ended up having to stay thru Sunday so they could try to finish more up on Mon & will go back then.  I took their Sunday clothes to them so they were able to go to church.  Tyson has a campout on Wed thru Sat so they need to get home to wash their clothes & get ready for that. 

Well, that’s about it for now.  We only have 1 appointment today which is with the pain dr.  Tomorrow we don’t have any appointments so we will probably try to go check out the famous Mall of America or something.  I am so amazed at how calm I feel & Alexa too.  I’m sure as the surgery gets closer we will feel more anxious, which is normal, but I know that all we have to do is pray & read our scriptures to know that our entire lives are in Heavenly Father’s hands & He can make everything work out the way it is supposed to so we don’t need to fear.  I love you all & I’m so grateful for all the fasting & praying on our behalf!!!  Thank you Dad for reminding me about D&C 98: 1-3.  I need to read that often right now since it was written just for me!!!

Love Malinda  

PS. Nevermind about the apartment being ok, I just took 3 hrs to find a new hotel, move all the stuff we’d just brought up to the 6^th floor back down & check out of the room when we found out there was no wifi.  That was just too much with a TV that hardly gets any channels & the ones it does get were very fuzzy & no wifi.  Alexa would have gone crazy. We are now at a Super 8 motel about 15 min away from the hospital but I now have a happy girl that doesn’t have to smell “old people”, haha!

Hey guys, I know it's late coming but this is Alexa, yes i'm finally writing on my blog. The senior home did smell like old people. When we asked about the wifi the lady said that they didn't have any but that they were getting it soon. After we left I told my mom that they didn't need it because the people wouldn't even know how to use it.

Letters from family

Dear Family, 

I’ve had a lot on my mind as I’ve thought about Alexa and her upcoming surgery. I’ve been reflecting on what has been taught recently about the priesthood and faith. As I was pondering this morning and listening to some General Conference talks something finally clicked in my mind. It was one of those spiritual aha moments. I finally understood what Dad has been trying to teach us all along about faith, healing, and the priesthood. I was thinking specifically about Elder Oaks’s talk from this last conference about the priesthood and the power of it, and then I was thinking about the talk by Elder Bednar in his CES devotional in March 2013 when he spoke of the man having and needing the faith not to be healed. Those two talks, coupled with the stories that Dad had us listen to by Elder Matthew Cowley, really got me thinking. I thought of the stories that Elder Cowley told. I realized that all the people in the stories had the same attitude. It was an attitude that the person was, in fact, going to be healed. There were no if, ands, or buts. It was just simply going to happen. They had, in essence, child-like faith, nothing doubting. As I thought about their attitudes, I started reflecting on my own. I realized that that hasn’t entirely been my attitude. I have faith that Alexa can be healed if it’s the Lord’s will. I have faith that he can do it. I also have total faith in the Lord regardless of whether He heals her or not. If it isn’t His will that she be healed, my faith will not waiver. I will still trust in Him. However, I don’t think I’ve been exercising my faith completely. I guess that’s why the phrase is to exercise your faith, because it takes work. I have been praying that Alexa will be healed and know that it can be done, but I’ve always coupled it with the thought that it probably isn’t His will to perform a miracle like in Bible times so I’ve just accepted the fact that she is probably going to need this surgery and He will just bless the physicians and surgeons. So, basically I’ve been exercising faith only to an extent for fear that it really isn’t His will that she be healed and I’m going to be let down. As I was thinking this morning I realized that I need to change my attitude. I not only know that the Lord can heal Alexa, but I know that He will. She has been promised as much. I keep thinking of a line from my friend, Sarah’s, write up of her story when she discovered she needed a brain tumor removed. Her mom responded by saying, “The bigger the tumor, the bigger God could show up like He had always done.” Not only can God heal Alexa, but what a great opportunity to bear testimony of His power and love and to glorify Him! I have decided to change my attitude. I want to exercise my faith as Mom and Dad have been trying to teach me to do. I want to show faith as those people in Elder Cowley’s stories, child-like faith, nothing wavering. I know that Alexa can and will be healed. She has been promised through the priesthood that she will be, and I am going to show full confidence that the Lord always keeps His promises. Even if Alexa does have to undergo surgery, I am changing my attitude to that of glorifying God. No matter what happens once she gets to that hospital, if we can seek for every opportunity to celebrate any little miracle every day she’s there and to share that testimony of God’s power with others, how many miracles will be discovered? In D&C 42: 48 the Lord, while talking about the elders coming and laying their hands on the sick, says, “he that hath faith in me to be healed, and is not appointed unto death, shall be healed”. There are no stipulations to that and prerequisites except to have faith. Elder Oaks taught in a talk from General Conference, April 2010 called “Healing the Sick” that “faith is essential for healing by the powers of heaven”. I believe that faith is not just believing or knowing that something is possible or that something will happen. I believe that faith in Jesus Christ needs to be coupled with gratitude and is only true faith when we are seeking to glorify God. If we are not seeking to glorify God, then we are seeking the blessing or miracle selfishly. We are seeking it for ourselves. Alexa, you have a busy week of preparation ahead of you with appointments and tests and such. As you go through all that you have to do, try to find as many miracles as you can. Record them on your blog to testify to the world. God will be more able to perform a big miracle for you if you are willing and able to recognize the small ones and testify of them to others. You have been given a great trial to endure for which reasons we may never understand fully in this life. We know that you will be healed from this trial one way or another, and I know that the Lord desires for you to be a light for others, as you have been thus far. Just as my friend, Sarah’s, mom said about her tumor, I say similar words about your trial, “The bigger the pain, the longer the trial, and the surer the test results, the bigger God can show up, as He always has.” Maybe that’s one of the reasons this has gone on so long. I know that the Lord will heal Alexa. We know, from previous priesthood blessings that she has received, that she is not appointed unto death, therefore, as the Lord has promised, if we exercise faith, she will be healed. Just as Elder Cowley pointed out in his talk though, these things don’t always come about just by asking but by fasting and prayer. We’ve done much of that already, but the timing wasn’t right. The time is now. Something is going to happen one way or another now. I know that the ward is going to be fasting for Alexa on the 29th, the day before the surgery, but I thought it would be great if we could do a special family fast this Sunday as well, for those who are able to. I don’t know about you guys, but there’s something stirring in me this time. I just feel so much surer about her being healed. I feel like the timing is right, and it’s almost exciting to me. What do you guys think? Does Sunday work for everyone? 

Love you guys, Chels

Tonya Rose Crane

I echo what you just said. Chels and I talked about his last night also and I have been thinking about faith today as well. Looking back at the times when I have been able to call down Heavenly Father's specific help, I have had this totally faith Chels has mentioned. Like I was trying to explain to you yesterday Chels, I don't really know how to explain what it felt like having that kind of faith, but it was like I could feel my Spirit talking right to Heavenly Father and KNEW He was there and would help me exactly as I had asked. I am definitely going to be fasting this Sunday as much as I am able. Thanks Chels for putting this in the perfect words (like you always do ) Love you guys!!

6/20/14

Well, here we are beginning our journey.  It already began as we have been trying to get Alexa off her pain medicine onto a different one.  She has been having so much pain!  Two mornings ago she woke me up at 4 AM & was doubled over in pain & couldn’t take any more meds.  We decided we would say a prayer since Ty wasn’t here to give her a blessing.  I said the prayer & told Heavenly Father that Alexa has had so many blessings for this pain already & we need her to be blessed right now for her pain level to come down so she can sleep.  When I got up Alexa told me she needed something for nausea.  When I got back from the kitchen she told me that she was ok now, the pain was coming down.  Heavenly Father has blessed her like that time & time again, instantly like that.  I know that He can heal her also.  Alexa has been told in a blessing that we need to listen to the medical doctors who have researched this.  That is what we are doing now.  I do have complete faith that she will be healed & will join the fast with everyone.   Whatever happens is completely in God’s hands, as is all of our lives.  We will do the little things every single day to bring us closer to Him such as reading our scriptures & praying & also, while I am there, I will be an instrument in His hands & open my mouth & share the Gospel.  I have made so many friends thru the pancreas website who are suffering & they are incredible people.  Maybe this is why we need to go there too.

Love Mindy 

PS. We welcome everyone to join us in this prayer & fast!!!

Alexa's Story

This is just a quick summary of what Alexa Rowley has been thru.  She has been having stomach pains off & on since she was a child.  I am Mindy Rowley writing this story & I am her Mom.  In 2011 she got her appendix removed & we thought that would be the end of the pain but she continued to have attacks at times.  The summer of 2012 we signed her up to go to EFY camp & her pain was so severe that I had to pick her up early & she couldn't finish out the week.  After that she had girls camp & had to just go up for the day & come home at night.  The pain was getting worse & more constant by then.  By the time school started she was only able to go to one full day of school & we realized it was not going to happen that year.  The pain was so bad we had to get her on something stronger for her to be able to cope.  That's when I decided to enroll her in American Schools, a home school correspondence program where she could work at her own pace.  I had had two other daughters graduate from there & knew it was a very good school.  

That is when all of the testing, guessing, ER visits & my research began!  She had CT scans, ultrasounds, Endoscopes & hida-scans done.  Everything seemed to look normal except on her hida-scan her ducts seems a bit enlarged.  That made Dr. Cook think that she needed her gallbladder removed.  At this point in Oct, 2012 we were willing to try it since we were making multiple visits to the ER every month.  Well that surgery didn't seem to make a bit of difference or help with the pain.  The thing that was even more frustrating than that was that Dr. Cook wouldn't believe that her pain was "real" & actually had the nerve to say to me that "it is all in her head!!!"  

That is when I really started doing some major research & found out about Sphincter of Oddi Dysfunction.  Dr. Sharp, our neighbor & primary care doctor, is the one who first mentioned it so I started really looking into it.  I joined a facebook site & started talking to people who have it & read article after article about it.  I was convinced that it was exactly what Alexa had.  There was a surgery that could be done to help but there was one test called a monometry test that could not be done here in Utah because they didn't have the proper equipment.  I talked to a friend I had met on the facebook site & found out about Dr. Robert Hawes  in Florida who was supposed to be the best & made an apt for her to go there.  This was one of the scariest things I had ever done in my life!!  Anyone who knows me knows how directionally challenged I am & to go to another state all on my own & rent a car in a big city was crazy for me.  I was pretty desperate to get my daughter better so whatever it took!!  Well, after trying foot mapping, acupuncture, chiropractic, changes in diet, cranial sacral therapy & lots of other stuff, in Nov of 2012 we went to Florida to see Dr. Hawes.  He did an Endoscope Ultrasound, a monometry test, along with an ERCP & sphincterotomy.  That is where they cut the sphincter muscle on both sides to relax it & put a stent in it to keep it open.  Well, that set off pancreatitis, although I didn't know that was what was happening at the time.  They had to admit her into the hospital & we ended up having to stay there for about a week.  I have never done anything harder than watch my daughter suffer so much!!  We were so hopeful that she would have some relief finally but no, there was still not much relief from that.  She felt better for about 3 days & then was back to her usual pain again.  

In March of 2013 Alexa was admitted in Primary Children's Hospital which turned out to be quite a joke!  Here is a little part of my journal that I wrote at that time:

We did learn that Primary Children’s hospital is NOT the place to go if your child has something that doesn’t show up on any tests.  They were absolutely ridiculous!!  In Florida when we were in the hospital the dr came in & had a one on one discussion with us but not there!  They have 4 doctors come in together & made us feel as though we were on trial or something.  At one point when I asked why they thought she got better for a while after her sphincterotomy one dr said pointing to another, “Oh, he can answer that for you.”  Then he said, “We know it isn’t that anymore since the sphincter has been removed.”  Dad & I just looked at each other thinking that he was nuts.  Also I asked them about the article I had brought in & if she could have Celiac Artery Compression Syndrome & they immediately said, “It couldn’t be that or she would just have pain after meals.”  They were so quick to dismiss anything we had to say since we were just the lowly parents & they acted like they were Gods.  After they left I email Greg & asked him if he only has pain after meals & he wrote back & told me that he has constant pain that gets worse after meals.  He also sent me some articles about people diagnosed with this & one lady had constant pain with no change with meals.  These doctors don’t even bother to research anything & won’t admit if they don’t know about something.  They also were trying to tell me that they had no evidence of blood in her stool.  I told them that the ER dr named Dr. Hayes had done a test & it was positive for blood in the stool.  She just said she would have to look into it.  Basically, they decided it was “all in her head” & she needed to see a psychiatrist.     

That's our opinion of them, haha!  We continued to run test after test trying to figure out what to do for Alexa.  Oh, did I mention that she also has Endometriosis?  In April of 2013 she went in for surgery for that.  We took her to an Endo specialist over in Ogden & he said he removed all that he could see.  He also said she had some endo close to going into her bowels, she has always had severe pain with every bowel movement.  Well, that surgery really did help a lot with the pain of her endo at least.  We just HAD to get that under control as she really couldn't handle having the pain from SOD & that!  

So one day as I was chatting with a lady name Corrine on the pancreatits facebook site she asked me if Alexa had ever had the genetic test done for pancreatitis.  I told her no since no one in our family had probs with their pancreas.  She then told me that no one in their fam did either but that their son's test had come back positive.  Their 22 yr old son had just had this surgery called TP/AIT where they remove the pancreas & take the islets cells from the pancreas & transplant them into the liver to prevent diabetes.  When I found out that the test was just a simple blood test I decided to call Dr. Alsolaiman, one of our GI doctors, & see if he could order it, which he did.  It took about a month or so to get the test results back & we were in complete shock when, in July of 2013 the lab called & told us that her test came back positive!  I was even more in shock when I asked them what that meant & she told me she had no idea & that she had never seen one of these tests come back positive before.  I called Corrine that day & talked to her for some time & she told me that if the test is positive that Alexa would for sure need to have the TP/AIT surgery.  She said that since her test came back positive that all other testing could stop because that means that for sure she has pancreatitis & it will never get better on it's own.  We then made an appointment to take her to the pancreas specialists in Tucson, AZ.  We spent a week there in Aug of 2013 & they ran all kinds of tests & confirmed for sure that it was pancreatitis.  When she had the EUS done it set off an attack of pancreatitis & she had to be admitted into the hospital again.  Well, wouldn't you know it, a couple of weeks after our visit there their program closed down!!!  Some kind of bureaucracy was going on with one of the doctors.  There we were having to find another center to go to!!  We had our choice of Dallas TX, South Carolina, Minnesota, or a few others.  I was on the facebook site daily talking to people to find out their experiences at different hospitals.  There was a girl named Melanie who had a miraculous recovery from the surgery in South Carolina & I had talked to her Mom, Shelly, several times & she couldn't say enough good about the hospital there.  We prayed & prayed about either going there or to Minnesota.  We had decided on Minnesota & had everything all booked with flights & hotels & everything & a week before we were supposed to go prayed some more & decided we felt better about going to South Carolina.  I even lost money on the hotel in Minnesota but I quickly changed everything to SC.  In March of 2014 we went there & both Alexa & I knew it wasn't right.  Everything was wrong about it.  When we got back I waited & waited for the feeling of peace to come so I could make the appointment for the surgery there but we just didn't feel right about it.  We watched the church movie by Elder Holland called "Wrong Roads" & that is exactly our situation!  I suppose we had to go to SC to know without a doubt that Minnesota was the place we were supposed to be.  I called & made an appointment in MN & we went there in May of 2014.  Oh, I forgot to mention that our wonderful friends & kids planned a fundraiser for us & surprised us!  The Merchants who were our neighbors & great friends in AZ have a band called Firefly & they performed as a fundraiser for Alexa!  They were able to raise over $12,000 which more than paid for our deductible!!!  We feel so blessed & know that Heavenly Father's hand is in our lives.  There is a reason & a purpose for Alexa & us to have to go thru these trials.  We will go thru them with gratitude in our hearts even though they are hard!!   

ALEXA LOUISE ROWLEY

    

Alexa at party with friends before she was sick

 

Alexa in Fiddler on the Roof before she was sick

 

Alexa at hospital in Florida. It was called the Disney Wing

 Alexa waiting for endo surgery