My heart still hurts each and every day. I lost a huge part of myself when I lost Jan. Everyone else seems to be moving on with their lives but Janny was my life. Thank God for Paige who now keeps me going. Thank you to everyone that has continued to check up on me and keep in contact. I appreciate it more that you'll ever know.

I love each of you,

Debby

Hope all you fathers had a great day today.  We had the family over for pizza tonight. Mr Degen seemed to have a good time.

Jan was really tired today.  She got up early and never really got caught up on her sleep so she was pretty out of it.  After the family left we layed in bed for about an hour and she just went to sleep.  All this rain is causing her to have headaches so she has been on pain medication most of the weekend.  The only good thing about that is that it makes her thirsty !

Hopefully we'll hear from the doctor tomorrow about the MRI's and we will let you know.

Much love,

Debby

We got a good report on the blood work today.  Red blood cells in the normal range and platelets are 101,000.  All her vitals were good.  Her heart rate was up a little which indicates that she is a little dehydrated so we will spend the weekend trying to correct that.  We can't even consider going back to Houston for treatment if we can't get her drinking more. 

We dropped the May MRI off to Dr. Uy so hopefully we will hear from them the first part of next week.  I also spoke to a nurse at Burzynski's office yesterday.  Our doctor there is looking at how we can change the treatment to make it work for her.  Now that I am officially on leave from work we could stay in Houston longer which would mean that we could build her dosage up slower and hopefully her body would be able to tolerate the sodium better. 

That's all the news.  She is in good spirits but extremely tired.  We both went to sleep at 2:00 Friday afternoon and didn't wake up until 6:45.  We got up and ate and went right back to sleep. (which explains why I'm up at 1:45 posting a blog)

Have a great weekend.

Much love,

Debby

We have a 10:00 appt today for blood work.  I hope it comes back as good as the MRI.  Paige will post the results when we get them.  She is such a great daughter. (most of the time)

I can't express how excited we are about the MRI.  I am picking up the May 12th one today and taking to the doctor so he can compare the 3 together.  I'm anxious to get those results.  I will also be in contact with Burzynski Clinic today.

We will keep you posted.  Thank you as always for everyone's thoughts and prayers.

Much love,

Debby

I am sure a lot of you have heard but for those who havent we got the MRI results today. We went to see Dr U-E (I dont know the spelling so that is how it is said). The last MRI we did here was in March. So we had an MRI the day before mothers day to take to houston (what was that..May 11th) which we did not see. Todays MRI showed that the "beast" was the exact same as the MRI in march. Do the math...3 MONTHS and it is the same. Dr U-E was very openly opposed to us going to houston (said they were quacks) and today on his own said "If you guys were thinking about going back to houston, I am all for it." Now that is a big turn around! he told Mr Degen that something stopped it from growing and if that is what Jan did (go to houston) then that is what did it. He was pleasantly surprised that it has not grown. So now mom and I are going to get the MRI that we got for houston and give it to Dr U-E. He can then compare the march, may and june MRI's to determine if it had grown before the houston trip or if for some reason it stopped growing on its own. So if there was growth before houston that means that the medicine shrank it. Hopefully we will have those results by the end of this week or the first of next week. I will keep you all posted. PRAY HARD...this is the good news that we have been waiing for! Love you all...I am going to go write my art paper. I will talk to you all tomorrow.

Paige here....sorry there have not been blogs lately. I am taking two classes over the summer and have been preoccupied. I know I know...its no excuse. I just want to say thank you to all who came over and worked in the yard. Everytime we pull up to the house Jan mentions how great it looks and how sweet everyone is that chipped in. It was a lot of work but we had fun and it really paid off. So thank you! Now lets do the backyard! lol no lets not...Im still sore from the front yard! We had a MR. I (MRI) today and will get the results tomorrow. If there is anything to report then I will let you know. Mom is on leave for 30 days in case you did not know that. So we three have been relaxing and enjoying each others company. I will try to squeeze some time in between school work and Jan time for you guys! : D love to you all. I will talk to you later.

We are home! woo. Just thought I would blog for everyone to know that. So now I know you all want to rush right over but please call and make sure before you do. Mom and I want you all to see her but she is still tired from the trip (tho doing much much better). Love you all and talk to you later.

Paige here. We are trying to wait the storm out right now. The weather shows that there is a storm from here till Tulsa. If the storm doesnt go away then we will prolly just spend the night again. I will let you all know as soon as I find something out. As of right now I do not know when we will get to check out. Mom and I are watching Alpha Dog since there is no cable since it is satellite. Jan is sleeping good. Talk to you all later. Love you all

 

So we are staying the night in Dallas. Jan is sleeping after eating meatloaf and potatoes and fruit. Mom and I are going to play a rousing game of dominos and watch the baseball game...We are sleeping in till we wake up and then heading the four hours home to Tulsa. So I will let you all know when we get home. Jan will be exhausted so you guys can call but please do not just show up. I know that you all want to come see her but we will try and spread the visits out over the next week and weekend. Love you all and we will talk to you later.

Love,

 Paige

Jan is laying in bed at the HOTEL! thats right we are out of the hospital. Mom is picking up a pizza and we are going to eat and then Jan is going to sleeeeep. I do not blame her, she is exhausted but she looks good and is doing well. I will let you know what is going to happen next...once I know what is going to happen next. We are going to let Jan sleep before we talk about leaving time. So love you all and thank you for the prayers. Keep them coming.

Paige

So no news really. Jan is not home from the hospital so I do not know when that will be. Another day or two I guess. She is in good spirits and is eating well. We snuck a blender up there and are making her smoothies undercover!! She and mom are sleeping now and I am at the hotel getting ready to go to bed too. I will talk to you all tomorrow.

Hello, I wanted to update you all even tho I really do not have that much information to give you all. She is still in the hospital but will most likely get to come home tomorrow. She is feeling much better. She is talking normal and laughing. Her blood packs didnt finish till like midnight last night so today they have been monitoring how she reacts to them and see if they help bring her counts up. So when I find out when she is going to be able to leave I will let you all know. Mom is staying up there with her and I am at the hotel doing some cleaning since it is an absolute pig sty. Having 10 guys, a stretcher, and all their bags really messes up a room. Well I love you all and will hopefully have some decent news for you all tomorrow. Keep praying.

Paige here. So Jan was much better. Her levels are back to normal and  today they gave her 3 bags of packed red blood cells because they were getting low. Not much happened today. Mom and I stayed there and I just got home. Mom made me come back to the hotel while she stays up there. There is not really a lot of room in there and so she made me leave to get some sleep. They want to see how her blood is after the transfusion is complete and she has had a good night sleep. So thats all I know and I am sorry that it is coming so late and that it is little information. I love you all and pray hard that she gets to go home tomorrow. If you guys want to call tomorrow then call mom's cell. She has to keep it off but checks it when we go outside. We will call you back when we get the chance.

Paige here, So remember yesterday when she was so tired and we let her sleep the whole night. Well we went to wake her up around 9:15 and she was so so so exhausted. She would open her eyes but could not sit up, could not speak. She just kept closing her eyes and sleeping. She was exhibiting signs from when her shunt had stopped up. Mom and I were freaked out. So mom called the clinic and they said it may be sodium overdose and to get her to the hospital. We called 911 and in about 5 minutes had a firetruck, policeman, ambulance and and ambulance supervisor car in the front of the hotel. There were so many guys here checking her out. It was so scary. They got her on the stretcher and took her down to the ambulance. I rode in the supervisor vehicle and mom rode in the front seat of the ambulance. They took her into the ER and did a CT scan and checked all her blood levels. Well her shunt was working fine but her sodium level was 162. Normal range is about 135-145. This is very extreme so they had to put potassium in her. Potassium will counteract the high sodium level and help to balance them out. So mom and I stayed with her till about 5:30 and then we took a cab home to get the car and we slept for about an hour and a half. We got back up there today and she is 100% better. She talked and drank water. We stayed with her all day. We went out to the car at one point and slept for an hour. We did this one other time but we only slept for about 45 minutes. She is much much better and her sodium is now down to 150. Tomorrow it should be back to normal and she should get to go home. We will let you know how tomorrow goes but right now mom and I are going to go to bed so that we can get up and be there at 7:00. I am sorry that this is coming to you all so late but there is no wireless at the hospital bc I tried to blog earlier today. I love you all and pray hard. I will update you as soon as I know something and have the chance.

So today was a pretty decent day. We were exhausted when we got to the clinic like always because it is way too early for us! So today I drew her blood. The nurse walked me through it but I still got to do it on my own! I enjoyed it. Mom didnt watch. lol. She did the dressing change and the nurse took Jan's stitches out. Jan slept almost the entire time we were there and I dont blame her. We got the blood result back and it said that her sodium was 157. That is way to high by their standards. So our nurse was like that doesnt seem right and took a small bit of blood and ran it is their other machine that is supposedly more accurate. Well we had everything ready so we had to just sit and wait for the results. The nurse came in and said that her sodium showed 139. Ok then that is much better. We were glad that it came back that way. We have been watching so hard what she eats and she is drinking tons of water. We got to increase the medication level and hook her up. Since she is increasing in her medicine everyday we had to wait for the first one so that we could change her bag. We left about 2 and came back to the hotel. Jan is sleeping now, mom is watching the American Idol finally and I am watching the the Yankees/redsox game. We will probably go to bed after the shows are over.

Love you all and just keep praying!!!

Paige