Friday, February 25, 2011

Oh the DRAMA!

In the last post, I said Savannah was coming home. Shortly after that, Danny and I decided she should fly home a different route since flying through Chicago was risky with it snowing there. I stayed on the phone forever with NIH travel trying to find her another flight through anywhere. We tried every airport here into every airport within 2 hours of XNA but there was not a flight to be had. We ended up just keeping her on the original flight hoping she wouldn't get stranded.
About 10 minutes later she called and was very bummed out. They canceled her flight because of trouble in Chicago. I rescheduled her flight out for tomorrow and told her she could just check out of the hospital and stay here with us at the lodge. That just didn't excite her at all --so-- she started doing searches on her computer and found a possible flight through Atlanta. Her persistence paid off this time. Finally, she left on the shuttle at 2:30 to get to her flight at 5:00. She text'd me from the airport here and said her flight had been delayed an hour or so due to extremely high winds. Shortly after that she sent a message saying the delay had been canceled and would be arriving home around 9 pm.
So.....she is now back home and very, very happy!
She feels pretty good, she's just very week. She will have to go get a daily infusion of antibiotic until next week but other than that, she's AWESOME. God has blessed us - yet-again!
Susie and I will be leaving early in the morning. See y'all soon!!!

Checkin' Out!

She's going home!!!!!!!!! Savannah called me at 7-ish this morning and said that she could leave. She is ecstatic! So now we have to get her all packed and on the shuttle to the airport. We're a little worried about her flight through Chicago since it is already snowing there! PLEASE pray that she gets through with no problems.
With her immune system being so low, we definitely don't want her to be stranded in a huge, crowded airport like Chicago.
Since she is leaving a little later in the day, Susie and I are going to wait and get a fresh start early in the morning. We should be home by Sunday, Monday....or.....Tuesday.....depending on how many Flea Markets we spy on the way! :) Thanks for those prayers!!!! LOVE!!!!!!

Thursday, February 24, 2011

Thursday

Today Savannah got more platelets and they will check her count in the morning to see if she can go home. We rescheduled her flight today to fly out tomorrow at the same time but the doctors have the final say so......we'll just have to wait til morning to find out.
She came over to the lodge again to have dinner and watch the rest of American Idol. Susie treated us to Chinese food tonight. Lots of places around here deliver to NIH so we were able to stay in. We all REALLY enjoyed it and Savannah ate more than she has eaten in weeks. (Thank you Susie........Bless your little heart!)
So- that's all I know for now! Good night!

Wednesday, February 23, 2011

Wednesday

Well, like I said, everyday there is something new. This morning they were going to put Savannah's pick-line in and probably let her go home tomorrow but when they put the line in her arm she started bleeding. Her blood wasn't clotting due to her being low on platelets. This afternoon the Dr. said NOT to plan on going home because they are going to have to give her a platelet infusion. She says she can get the platelets and still catch her flight out. I don't think so. I think she'll be going home on Friday.........hopefully!
She came over to the Lodge tonight and actually ate a little dinner and watched American idol with Susie and me.
We'll see what tomorrow brings..........??????????
Take care!

Tuesday, February 22, 2011

Tuesday

When I went to bed last night the ice and snow had covered everything. Apparently at the end of the snow it turned to rain so it ended up much better than we expected. Still, we just stayed on campus all day.

Every morning is a new day as far as Savannah is concerned. After she returned to the hospital last night she got sick. Through the night she started running a fever again and her platelet count dropped. By the time I got to the hospital this morning I thought we were going to be here for another week or two. A little later in the day the doctors came in and said she would probably be going home on Thursday.
She immediately started feeling better!!!
Because her fever keeps popping up, they wanted her to have a chest x-ray. She declined their offer to take her to radiology. She said I would take her. So, after I found a wheelchair we were off. On the way there, I didn't run her into any walls or corners like I did a few days before. No getting caught between the automatic emergency doors or sandwiched between the elevator doors. UNTIL....we reached the radiology waiting room. Have you ever tried to push a big wheel chair through a crowded room with lots of chairs and people and trash cans? I had an elderly lady chasing a trash can that I ran Savannah into. You know, the big plastic ones that sound like a bass drum if you hit them just right. I noticed Savannah laughing and gasping hysterically as we spun out of control doing donuts through the innocent, unbelieving audience. People were offering me their seats just so I would quit moving. Finally, I got her parked and they immediately called her name. The nurse took it from there.......enough said. It was, however, nice to see Savannah laughing so hard....even if it was at my expense!
She doesn't feel all that great but she has such a good attitude and outlook on things. Before I left her room tonight, she ate a little bit. That's quite an accomplishment. Pray she gets her appetite back so she can regain her strength.
Thanks! LOVE Y'all!!!!!

Monday, February 21, 2011

Monday

There is a 100% chance of ice and snow in the Bethesda area tonight. Day before yesterday it was 70 degrees. Just like Arkansas....we feel right at home!!!!

Savannah is no longer neutropenic so she can get out of the hospital a little bit. Tonight she came to the lodge and watched a movie with Susie and me.
She is still on antibiotics so she has to spend the night at the hospital. I think she was wanting to go somewhere tomorrow but I have a feeling it's going to be too slick to get out. We might just end up having a chick-flick marathon in the room. :)

Susie and I went to Home Goods today. It makes us so happy! I would LOVE to open one in Fayetteville and Susie wants to open a Cheesecake Factory......maybe when we win the lottery. LOL!
Hope to see y'all soon!

Sunday, February 20, 2011

Sunday

Savannah called me this morning and said the doctors had been in and said she was low on blood and platelets. They didn't really say why but apparently it's not unusual with this treatment. Once they got her hooked up, it took all day for her to get it. When I left the hospital about 7:20 pm they were just starting her antibiotics.
She is getting really bored and wants to come home but her counts have to be over 1,000 for 3 days in a row. Today was the first day they hit 1,000 so only 2 more days!!!!....barring any other problems. :)
I think Susie and I are going to watch a movie so.....better get the pjs on and get comfy!
BTW Carla, thanks for mentioning that twirling "thing" on facebook!!! :)
LOVE to ALL!

Saturday, February 19, 2011

Saturday

I didn't realize how long it's been since I last posted a blog. Time is so strange out here....I'm usually not even aware of what day it is. Time flies but yet it seems like I've been gone forever....? Susie made it out without any problems. It's nice having her here to keep me on track. ;)
Savannah is doing good. It was a little scary there for a couple of days. She started running a low grade fever and her blood tests indicated she had some kind of infection. The tests showed a Staff infection but they didn't know if it was in her system or if it was a contamination from the pick-line they had installed. They ended up removing the line and putting her on some strong antibiotics. It looks like the threat of infection is gone. So for now we're still just waiting til her immune system is back up where it should be. She has NO appetite at all so we're all trying to push food on her but...stubborn is her middle name!!! I guess she'll eat when she really needs it.
We had some disturbing news today. Joe Salsbury, Danny's brother-in-law (married to his sister Shirley), found out that he has cancer. He is such a precious christian man. I would like to ask y'all to please pray for him for healing. We are all well aware that God can do anything! He performs miracles daily and I believe that will be the case for Joe.
Hope to be home soon. Thanks for the prayers!!!! love you ALL!

Tuesday, February 15, 2011

It's late...

I just got back in the room from the hospital. Savannah had kind of an "off" day. One blood culture they took grew something indicating there might be a possible infection or contamination so they started her on an antibiotic. She had some kind of reaction to it....nothing major, just an itchy rash that broke out on her head and started down her face and neck. Fortunately, it only lasted a half hour or so but even after that, she just wasn't her bright, cheerful self. They said she might be very tired because of all the hard work her body is doing inside to heal itself. I stayed through more than half of the antibiotic tonight to make sure she wasn't going to have the same reaction. When I left she was good and ready to sleep! I'm sure she'll have a better day tomorrow. :)
Danny is now at home dealing with busted pipes, work, Shelby and her friends etc....so I've been by myself for a few days. I've made a lot of new friends.
Susie left this morning so she should be arriving tomorrow afternoon or evening.
I'll be glad when she gets here safely.
I'm exhausted.....going to bed........goodnight!

Saturday, February 12, 2011

Saturday

Savannah got the TIL cells Thursday. It was exciting but didn't even take 30 minutes all together. She's neutrapenic so that means no immune system at all. We are having to take precautions going in and out. Otherwise, she feels very good. The treatment is over. Now it's just a matter of her counts getting back up to normal which could take anywhere from one to two weeks. The doctors are impressed that she is doing her school assignments. I guess most patients on this protocol don't feel like doing much of anything.

Jeff and Rose left here Friday to fly home for a visit with Mom and Daddy. I hate it that we're missing time with them but maybe we'll make up for it later. We got to spend a little time with Donna and Lilly today. We had a nice visit then Donna, Lilly and I came back to the Safra house to get Lilly ready for her Valentines Day Dance at school. You would have thought she was getting married or something. I was doing her nails while Donna was curling hair. We both worked on her up-do for a bit then I started on the makeup and Donna the wardrobe. She looked beautiful.....not so much because of us but just because she is a natural......and such a lady. Sniff, sniff, (they grow up so fast!!!!)

Danny is leaving early in the morning (Sunday) to come home. He should arrive home Monday night and he'll be back at work on Wednesday. I think he's coming home to some busted pipes due to the freezing temps this past week. Joy, Joy :(
Since he is leaving before Valentines Day, he took me out for dinner tonight at The Silver Diner. It's very cute and fun. Juke boxes at each table, 50's & 60's music and 50's decor! Good food too. We had a great time.

Please pray that Danny will have a safe, uneventful trip home!!!
Thanks for ALL the prayers!!! love


Wednesday, February 9, 2011

Free day

Today was a free day for Savannah. No chemo or IVs or anything.....until tonight at 10 pm when they start her IV fluids for hydration. In the morning they will replace the fluids with her TIL cells. It will probably take a few hours to receive the cells.

Since she wasn't hooked up to anything, we decided to go out and about. We had planned to go walk around White Flint Mall and maybe catch a matinee but when they released her for the day they said she could do whatever she wanted as long as she stayed away from the malls and movie theaters. So.....there went our plans.
We did make it to Homegoods and OH MY WORD! It's a decorators paradise. It just made me happy to wander the isles and imagine all the possibilities. Savannah was in bliss too. Danny........not so much.

When you are saying your prayers please remember all those people here in the hospital. Their families are staying here at the lodge and we've met many of them. Hearing their stories just makes us so thankful for our situation.
So far, we've met people from all over the states, England, Jamaica, France, Russia, China and some others we haven't figured out yet! :) ???

Y'all stay in and warm. I'm a little bit bummed that I'm missing the biggest snowfall in years but judging by the temps - I might get back before it thaws!
LOVE!!!

Tuesday, February 8, 2011

Lab Day

Today we got a tour of the LAB where all the magic happens! Mark was our guide. He explained everything very well and as simply as he could given the complex nature of his work. I'm sure he dumbed it-WAY- down as soon he saw the "deer in the headlights"look from the three of us!
I never thought I could get excited about science but the work they're doing here is truly AMAZING!!! We saw where the tumors are analyzed and tested and where the TIL cells are grown and stored. With a telescope, we looked at Savannah's cells that they have harvested. They keep them at several different stages. Looking at them under the microscope you could see how many cells were in the smallest drop... and they just keep multiplying!! They have her cells there ready to go on Thursday when it's TIL Time. They are going to put 10 million cells in and within a few hours those cells will double to 20 million!
Last time, they grew the TIL cells from parts of the tumor they removed from under her arm. They were then put in IL2 to grow and multiply. This time, they are using cells from the tumor on her spleen and growing it in IL12. Mark referred to these cells as the "Arnold Schwarzenegger" of cells. They will be bigger, better, stronger and tougher than any so far AND they will continue to stay in her body and fight against cancer. Sounds cool.... huh?
I'm so thankful to God for these people He's using to discover cures and treatments. I hope they know they're being used by Him!

If Savannah feels like it, she wants her Daddy to take us to Home Goods tomorrow so she can shop around. After that, maybe a matinee?????
Thanks for those prayers! love!!!!

Monday, February 7, 2011

Savannah's address

Some of you have been asking for Savannah's address here at NIH so here it is......
Savannah Dutton
c/o NIH
10 Center Dr. Bldg.10
3NW, Room 2624
Bethesda, MD
20892
Today was a good day although Savannah still feels "yucky"
After her chemo treatment this morning they said she could have some time out of the hospital so we took a little drive around the city and stopped a couple of places. She can't stand to eat anything and even slight smells from food and other things makes her nauseous so we had to be careful where we went. Other than that it's been an uneventful day....which is FINE with me.....uneventful is good around here.!!!
I'm still feeling under the weather but better than the last 2 days. I feel those prayers working! Thank you!!!!!!!!!

Saturday, February 5, 2011

Family Day

Savannah is feeling kind of yucky today due to the chemo but as usual, she's a real trooper!

Jeff, Donna, Lilly, Rose, David and Aparna all came for a visit today. They arrived with armloads of food perfect for lunch on a cold winters day. We had a wonderful time talking and catching up with each other. I wish they lived in Arkansas so we could spend more time together!!!! hint, hint....Anyway, Rose has been sick for a few days and I am getting something so while the rest of the group went to visit Savannah, Rose and I went up to our room and did nails, make-up and hair......what else? It was a nice day.....except.........I am sick! I'm not sure what it is....bad cold, sinus infection...who knows...but I need some major prayer because not only can I give Savannah something but all the people here have family or friends that are in the hospital and everybody has a compromised immune system. Please pray it will just go away!
Right now, Danny is in Savannah's room kicked back in the lounge chair watching the Razorback Basketball game with her......IF she can stay awake.
If she feels like it, we plan on having a Super Bowl party in the family activity room tomorrow evening. GO GREEN BAY!!!!! (that's what Danny says anyway.....I have no clue)
Hope everyone stays in where it's warm and safe. Cuddle with your kids!!!!
Love to ALL

Friday, February 4, 2011

Chemo day

Yesterday, we walked into Savannah's room and found her looking somewhat like a smurf. They had put her line in and used blue antiseptic...I guess....anyway, she makes a cute smurfette! She was in a little discomfort due to the incision on her neck but otherwise good and happy. The doc said she shows traces of some kind of infection, UTI or maybe sinus etc....I don't think it's enough to stop them from starting the chemo this afternoon like they plan. When we left her last night she was frantically trying to get her homework done that she has gotten behind on.
No real excitement till chemo this afternoon or early evening.
I'm feeling like I could be coming down with something........sore throat, coughing, runny nose.......please pray for me that I can stay well enough to function for Savannah's and Danny's sake. Also, when she gets nutrapenic (no immune system) I won't be able to be around her at all if I'm sick. We can't have that!!!!
More later! love!!!!!!!!!

Thursday, February 3, 2011

"Houston, We have a Patient"

Savannah has arrived!!!!! We should have organized a parade!
She was scheduled to fly out at 3:30 pm yesterday but after a few delays etc....she finally landed
last night around 11pm. She rode the Metro over to NIH and Danny picked her up at the shuttle station. She went straight to the hospital and checked in. They started her tests, scans, etc. at 7 this morning. Can't wait to get over there and see her beautiful smiling face!
While waiting on Savannah to arrive yesterday, Danny and I went "junkin'". They don't have the same idea of flea markets and antique shops as we do but it was a nice way to spend the day til Princess arrived. We learned that Danny and I - together can totally confuse a piece of high-tech equipment like our friend- Tom Tom He had us turning in places that didn't even exist. Bet y'all can't do that!!! We did get to see some new neighborhoods and scenery!

Many of you tell me that you appreciate the email reminders about updates to the blog but because they have changed the format of yahoo I can only send out 20 emails at a time. Since my address book has grown far beyond that, it has become too time consuming to send emails out every time I update the blog so....I will post on face book when I update. While we're here I will probably be updating every day so if you choose, you can put it in you favorites or....something like that! Remember.....I have no idea what I'm doing when it comes to "computer stuff"
We love you! Thanks for the prayers and EVERYTHING else!

Tuesday, February 1, 2011

No Patient!

Seeing as how we Dutton's love drama so much.....Danny and I are here in Bethesda at NIH. We are all warm and tucked in our nice lodge. So.....let's see.........we have the parents, the doctor's, the nurses, the medications, the hospital room waiting for the patient but.....NO PATIENT!!!
We drove out of Greenland early Monday morning and arrived this afternoon (Tuesday). We were on the phone much of yesterday with the NIH travel team trying to change Savannah's flight from going through Chicago to Dallas since Chicago was almost at a stand-still due to blizzards etc....! Who knew that at 6:40 this morning when she was supposed to be flying out of XNA that all flights in and out of Dallas would be cancelled......not to mention the XNA airport closing. There was also another winter weather advisory out for this area but fortunately it didn't do anything. Savannah was on the phone all day today trying to get a flight out. As of this moment, she is scheduled to fly out tomorrow afternoon at 3:30 through Dallas. We are really praying they can get the airports in working order so she can get here. They have her on a very tight schedule and the difference in a day or two can throw a kink into the whole plan.
Oh my my..........never a dull moment.
Oh....did I mention we have all of Savannah's luggage with us? We thought it would be best if she didn't have a bunch of heavy bags to check and tote around, so we brought them with us...which.....if everything had gone according to plan, would've been a good idea BUT....all of her books, pc and school stuff is packed in our car and she is stressing a little about getting her assignments done on time especially since she will get behind during her treatment.
Never a lack of things to pray for.....????!!!!!!!! Love to ALL