Monday, October 31, 2011

Happy FALL Y'all !!!

This is my favorite time of the year!!!! All the beautiful Fall colors, the crispness in the air, sweaters, Razorback Football and our yearly Hayride & Weenie Roasts. Shelby had her "friend" hayride Saturday night and our family hayride was last night. It was a huge success! Everyone had a great time.... Melanie and Carson even drove up from Belton, Texas just to be here for it. Of course, anytime all of us "crazies" get together we have a blast and the more people that come the more fun we have. Between the family stories, the snake stories and the ghost stories, I think everyone had a few good screams.
We have SO MUCH to be thankful for and to PRAISE GOD for!!!!!!!
Savannah's new medicine is most likely working on her tumors!!! She traveled back to NIH a few weeks ago for tests even though she is not officially under their care as of now. They said that most of the tumors looked smaller. Some were a bit larger but they think that might be the difference in the time of the tests and the delay in getting the meds. She feels great, looks great and seems to have quite a bit of energy. I can't stop praising GOD for all He has blessed us with! :)
I guess Shelby and her friends will be here tonight passing out candy to the trick or treaters so if you're looking for candy.......drop by.........OOoooooooOOooooOO!!

Thursday, September 8, 2011

PRAISE GOD!!! PRAISE GOD!!! Savannah's B-RAF Mutation Test came back positive!!! Even though any kind of mutation sounds scary to me, the doctors say it's a good thing. Apparently, if her cells are mutated, there is a drug (that has just been FDA approved last week) they can prescribe that can go into the mutant cells and attack them to eat up the cancer.....or.......something like that. You know me and scientific talk... :) Anyway, they say it has a high success rate so--that is our specific prayer now...that the drug works on her. She has other tumors in different areas besides her adrenal gland and liver but the doctors don't seem to be that concerned. I guess if the medicine works - it will work on all the tumors wherever they are. They finally put her on a steroid- type drug to calm her nausea and give her an appetite. It seems to be working. She is starting to eat a little bit and doesn't seem nearly as weak. She's not 100% yet but she's working on it.
There were a few dark days while we were there. Savannah was SO sick... then, we learned that the IL 15 Treatment was not working. At that point they pretty much told me there was nothing else NIH could do for her because there were no other clinical trials that she qualified for. Our Doctor said he wouldn't just leave us hanging though, and was researching other options at different hospitals etc....It was like a bad roller coaster ride....up, down and all around.
That night, I went to my room, exhausted, and fell asleep crying and praying. Everything looked so dim. Through the night God sent His spirit to comfort and console me. When I woke up It was almost like an audible voice that said "Get UP!!! It's a beautiful day!!! Why are you down? I told you from the very beginning I would take care of this and nothing has changed. I've got it under control!....TRUST ME!!!" SO...what else could I do?....I got up with a renewed spirit and had a great day with Savannah. She had a good day too! :)
Now, we are just waiting for all the paper work to be done and they will be sending us her drug. I haven't even read the info on it yet. I'm hoping side effects are mild and that she will tolerate it well.
We are asking for your continued prayers for total healing. Thanks SO much!!!!

Thursday, August 25, 2011

The unexpected!

Never would I have dreamed that when I woke up Tuesday morning and started getting ready for an eye exam that- at the end of the day, I would be standing on the Metro deck at Reagan National airport in DC.!!!
After Savannah and I got home last Monday night, she continued to get worse. She had not really eaten much of anything for 6 weeks and she was nauseous to boot. It got to where she couldn't even keep water down. Fortunately, she had to be back at NIH this Monday for tests. When they heard of her condition they decided to admit her the minute she got here. I was SO thankful for that because she was so weak she could barely walk.
Getting her out hear was a nightmare though. She left XNA at 3:30 pm on Sunday and was supposed to arrive here at 10 pm. But - of course.....that would have been too easy and drama free! When she got to Dallas, they had cancelled her flight to DC. Nobody knew was just cancelled. She was stuck in Dallas, too weak to even sit up, wanting to come home and go to bed....She was miserable and so were we, trying to do something to help her. Finally, the airlines arranged for a hotel room that SHE had to pay $75 of her own money for.... (that's an unresolved issue...!) But at least she was able to go to bed. The next morning she missed her next 2 flights because she was too sick to leave the room. She eventually made it to NIH.
I was sitting at my eye appointment with dilated eyes when her Doctor called. He said she was in bad shape. Her body had basically started shutting down because it was in "starvation mode'.
SO.....thanks to Darrin & Carla I was on a plane headed for my baby within a few hours.
They started feeding her by IV and by the next morning, she was already feeling much better. THANK YOU GOD!!!!
She just ate some mashed potatoes and gravy ...her first solid food in weeks!!! YAY!!!!!!!! I guess we'll be here til Monday because that's her next scheduled appointment and they want to monitor her till then. Hopefully we'll be flying home Monday evening.
Seeing as how we can't do anything without some sort of drama. I just have to share.....The medical team was just getting ready to put Savannah's picc line in when the earthquake happened. They had to evacuate the building. Everything was crazy for a while. Even the next day, that's all anyone was talking about. When I arrived later that night, it took forever to get from the airport to NIH because the Metro was running at only 15 mph due to crews checking out the lines and structure for quake damage. They did find some but not on any of the lines I had been on! wheeeewww!
Now, we just have to deal with the hurricane they say is coming through!
We need prayers that her tumors are dissolving!!! Thanks SO much! Love to All!

Saturday, August 6, 2011

Saturday, August 6th

Well, Savannah is doing pretty good. She gets her treatment around 11am every morning and about 2 hours after that she starts chilling and gets sleepy. I wrap her from head to toe with the heated blankets they have here and she sleeps for about an hour or so. In the evening, after she is unhooked from everything she comes over to the Lodge with me and we have a little dinner and watch some TV. She is eating a bit better so hopefully her energy level will start to rise.
She was in good spirits when I got here today. I thought maybe she was feeling a little better, and she might be... but.... after a brief investigation I found out it was due to a new - "HOT DOCTOR"

Wednesday, August 3, 2011

Day 3 of Treatment

August 3rd.....Savannah's 3rd treatment, Bo's Birthday and the day Carla leaves to go home.
Oh such an eventful day! lol
Savannah's treatments are going well. She isn't having extreme side effects like they thought might happen, but at the same time, the longer she has them the tougher they get on her system. They said the 2nd week might be more harsh. Her spirits are good but she has NO appetite at all and hasn't for about 3 weeks now. Because of that she is running low on energy. They said that's fairly normal when you have liver problems - in this case she has tumors on her liver. Both the spots on her adrenal gland and liver have increased in size a little bit BUT - that's what prayer and this treatment is for. :)
As I said - Carla left to fly home this morning. As she was leaving, she made the comment that "it's too bad you have to fly out of town just to get to spend time together." She'll probably never know how much I enjoyed and appreciated her coming out. We got to do a few fun things but I really didn't get to show her all of the sites in DC and the surrounding area that I wanted to. We did go to Union Station and see all the great architecture, some monuments, and the restaurants and shops that are there. That pretty much took a whole day by the time we took the metro etc...... We also went to Middleburg, Virginia (where Jeff, Donna, Lilly & Rose live). We attended church with them and got to see Rose light the candles, we shopped along the quaint little street and had lunch before we were off to Upperville where Lilly and Rose were in a Musical called HONK! It was a variation of The Ugly Duckling. It was Fantastic! Lilly and Rose did a wonderful job. Lilly stole the stage in the 2nd act with her dramatics and solo & duets. Very proud of them both!!! Afterwards, everyone else was busy with cast parties etc... so Jeff took Carla and me to an old historical Inn for dinner. We had such a good time just sitting, talking and reminiscing. Wish I got to see him more often! :(
Other days we hit a few neat shops around the Bethesda area and of course, Home Goods and Barnes & Noble for some new reading material for Savannah while she's in bed. Carla rented a car for a few days so it would be easier to get around. I can't tell you how thankful I am for that! Just ask her ----It's not like home where you decide you want to go somewhere and you hop in your car and get there within a few minutes. It takes planning and time and shuttles and metros and fighting crowds!!!!! :0's CRAZY! We also spent some time MOVING!!!, We started out in a Hotel then moved to Children's Inn, From there, we moved to Safra Lodge. We were there one night when they moved us to a 2nd floor room. I thought that was enough but turns out - if my prayer is not answered, I will have to move from Safra back to Children's Inn and then back to Safra to finish up our stay. It's all due to availability and the large numbers they're trying to accommodate . Hopefully, I will just be able to stay in Safra til we leave.

So, now I'm here all alone and plan to get caught up on a lot of paper work, reading, Bible study and quiet time. I'm actually looking forward to it....I already have a little "office" set up in Savannah's hospital room so I can be productive while I sit with her.
We are still asking for those prayers of TOTAL HEALING. Thanks everyone!

Thursday, July 28, 2011

Delay in Bethesda

Savannah made it to Bethesda with no problems on Sunday. After many delays, Carla and I miraculously arrived in DC within minutes of each other on Monday.
We were going to have to wait an hour and a half for the shuttle so I thought it was a great idea to just hop on the Metro and get there sooner. Yea, right! A couple hours later we still had not reached our destination, we were exhausted from hauling big suitcases (that would not roll correctly) on and off the train, up and down escalators and elevators. Anyone watching us would have likened it to an episode of I LOVE LUCY where Lucy and Ethel had gotten into some comical mess. I've decided people out here just don't see the humor in things like we do! :)
They did Savannah's tests on Monday and Tuesday and were going to start treatment on Wednesday. There's one test they didn't get the results for and they can't start the treatment without has to go in for a little while tomorrow and get her pick-line put in. After that she'll be free again til Sunday night when she has to check back in to the hospital for treatment on Monday.
She's a little bummed that this glitch has added another 5 or 6 days to her stay. She was really wanting to get in - get it done - and get OUT! In the grand scheme of things 5 or 6 more days will not matter that much, even though I understand how she feels.
Carla and I visited Union Station today. I think she was impressed! It's an awesome place to see, eat, shop and just people watch! After riding the Metro back we're just chillin' with Savannah in the Children's Inn until Tuesday when I move to the Safra Lodge...(my favorite place).
Savannah isn't feeling her best so please pray for minor ailments as well as total healing for her.
Thanks for those concerns and prayers! Love to All!

Monday, July 18, 2011

Ready, Set....Goinggggg!

Wow! It seems like it has become a habit with me but I'm feeling a bit overwhelmed. There's just always so much to do before you leave town for weeks on end. I guess I won't worry about the house, the laundry, the grocery shopping etc...Danny and Shelby will just have to live with it or do it themselves. :) Hopefully, I'll get some projects painted, upholstered, tagged and to the flea market before I leave. Business has picked up and our booth is looking a little empty but.....that's a good thing!!!
Savannah's flight will leave Sunday morning at 10:30am for Bethesda. To save more than a couple hundred dollars, I will fly out the next morning at 8am...ughhhhh!!!....that means I'll have to be at the airport by 6:30am... :(
My cousin, Carla, is taking a week or more out of her busy life to come with me. She is flying a different airline and will meet me at the airport. If all goes as planned, we will arrive within about 30 minutes of each other. She will return home on the 3rd and I will stay the rest of the time by myself. I feel bad for Danny, I know he would like to be there for Savannah.
It looks like we will be in a hotel for a few days until a room at the Safra house opens up. It will be a bit inconvenient since the closest hotel is several blocks away, not to mention $200 or more a night!'s ridiculous! On the other hand, the Safra house is right across the street from the hospital and we can get there within 5 minutes on foot if needed. But....whatever!...I guess it'll all work out like it's suppose'll only be a few days!
Savannah's IL15 treatment will hopefully start on the 27th. That is, if she gets all her tests and scans done on Sunday, Monday and Tuesday. We're really praying that this treatment is not so hard on her as the last two were...AND....that it works!

So, quick story for those of you not on FB. Saturday morning, I was sitting here just trying to catch up on some computer stuff when my phone rings. It's my cousin, Sheri. She wants to know WHAT'S GOING ON? I told her what I was doing and she said her family was freaking out because they had heard that I'd had a stoke and they were taking me to Little Rock. It was such a strange feeling knowing a rumor like that was flying around about me with no thread of truth to it. We were cracking up how fast word of mouth gets around....even without emailing, fb or texting. Apparently, someone had heard it at church. They called my cousins, Heath & Vicki in West Fork who they were friends with. They called their sister (Sheri) who called me and didn't get an answer so she called my other cousin (Carla) in Fayetteville who called Danny in Lowell. In the meantime Sheri called me again and I answered...thus....finding out - I was fine. It was very amusing.....for a while!
Once we back tracked and got to the bottom of things.....we discovered that it had all been true....they had just gotten the wrong Patti. It was Patty Underhill that had a stroke and was on her way to Little Rock.
That took the humor out of it. So, I haven't heard any updates but hopefully y'all will join us in lifting her up in prayer.
Exciting times in Greenland and West Fork!
Thanks for the prayers and support!