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 why....it 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 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"

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 ...it'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!