Day + 166

Day +166

Hello Everyone,

We hope you had a fabulous Thanksgiving. We enjoyed ours with family from Naples and Atlanta. It was so nice to have all of us together. We certainly had a lot to be thankful for this year, Jordan's donor was at the top of the list.

Jordan had clinic today at St. Joe's. She's been feeling pretty icky since Wednesday, having headaches, nausea, etc. After leaving St. Joe's, I sent Dr. Petrovic and Dr. Neider an e-mail explaining her symptoms and they asked to bring her to ACH to run some extra labs to look for potential viruses.

Hopefully everything will come back with good results.

Her labs today were:

HGB = 12.4
WBC = 5.5
PLT = 347
ANC = 4641
FK506 = 14.4
IG = 472

Her labs all look great, so it's a bit puzzling as to why she isn't feeling 100%. Since her IG level is low, she'll need a infusion again next week.

We did move into our new home. It's been a lot of work and will continue to be for a few more weeks. Unpacking and sorting through old boxes is never fun. It's very tedious and boring, but a necessity.

Jordan's new bedroom furniture arrived on Saturday. She was very excited to get it and it looks great in her room. We still need to buy furniture for her bonus room. She needs an entertainment center and couch, tables, etc. It's going to look like a family room when we're done. We call the upstairs her 'apartment'. If she had a kitchen, she'd have everything she needed. Lucky for us, she doesn't, so she has to come downstairs and hang out with us if she wants to eat. :-) It's good exercise for her to go up and down the stairs. It will help rebuild the muscles in her legs.

Kennedy is doing great. She is a total joy and brings us lots of laughter. My sister Megen, her son Cody and their Boston Terrier Jack were here for Thanksgiving. Kennedy had a friend to play with and she thoroughly enjoyed it. Jordan created a website for Kennedy on Dogster.com. This is sort of like my space but for dogs. They also have Catster.com for all the cat enthusiasts out there. You can see Kennedy's website at www.dogster.com/pet_page.php?i=420383

The rest of us are doing well. We are coming down with a bit of a cold and hoping Jordan doesn't catch it.

We have to start our holiday decorating. I love Christmas and enjoy dragging out the decorations. This year will be even better since we are in our new home.

Lots of love to you all. Thanks for checking on Jordan.

Katherine and family

Day + 152 again

Day +152

Hi Everyone,

Jordan continues to do great. We went to clinic today and saw Dr. Neider. Her counts all look good. RBC = 12.2, WBC = 5.74, Platelets = 348, FK506 = 11.9 Jordan had to get IVIG again today. The good news is that they are working with our insurance company to see if the next dose can be given at home. Dr. Neider said she can reduce the Prednisone again on 11/23 to 10 mg daily. She also gets to stop the Lantus (insulin) injections because her sugar levels are no longer too high. Her sugar levels have dropped dramatically over the last couple of weeks, since the Prednisone dose keeps decreasing. She is more than happy to stop the injections. She will only need to do the Humalog (fast acting insulin injection) if her sugar level is high. Dr. Neider says she has some Scleroderma, because of the GVHD of the skin. This is best described as tightness in the skin (arms and legs) and if you squeeze the skin, it dimples. (looks like cellulite) He recommended deep tissue massage and said that some doctors have seen improvement when massage has been used. We saw Mari Fernandez today in the hospital. Her son Danny got his transplant the same day as Jordan, they were neighbors in the BMTU for 4 weeks. He isn't doing so well and could use some prayers sent his way. He is suffering from some severe GVHD and has been admitted back into the hospital. Please keep him in your thoughts. On a lighter note, Kennedy is adding a ton of joy to our home. She is the sweetest puppy ever! She is also a very good girl. She had to spend the entire day in the bathroom today since we were at clinic for 8 hours. She didn't even have one accident and went potty as soon as Jordan took her outside. Thank you Karen for starting the potty training process. We can't thank you enough for that. :-) We close on our new home tomorrow and are really looking forward to moving in. Thanksgiving will be so much fun this year with some of our family here to share it with us. Thanks for checking in on us and a continued thanks for all the prayers and well wishes for Jordan's recovery.

Katherine and family

Day + 152

Day +152

Hi Everyone,
I decided to go ahead and update my journal for my Mom today. This morning we had to go to ACH for me to get in IVIG infusion. Hopefully, this will be the last time I have to go there to get it done. The doctors are looking into setting up for me to have it done from home from now on. So, I spent pretty much all of my day in the Hemac/Oncology clinic. I was glad to get home, although it wasn't until about 4:15 or so. My counts were all good and in the normal range. Some great news is that I can finally stop taking the insulin Lantus. I was having to inject about 30 Units of it a day, but my blood glucose levels have been nice and low. Since the doctors want to avoid Hypoglycemia, I'm just going to stick to the oral insulin, Actos, and the fast-acting injections, Humalog. It is a relief for the steroid symptoms to finalluy be going away. I'm still going to be 15 mg a day, because I haven't been on it a full week yet, and I was on 20 mg for two weeks, so we are going to keep that schedule. Other than that, theres not much else to report. Kennedy has just been a pure joy to have around. I was so proud of her today when I got home. We were worried she might have an accident being home for hours alone, but she didn't! She held it the entire time, until I took her out once I got back. (I decided to put her in my bathroom while we were gone, with her toys, food, and crate). Right now she's enjoying one her of toys, trying to destroy it, but luckily it's still pretty much intact.

Kennedy arrives

Jordan is doing great, especially since we picked up Kennedy from the airport last night. We didn't know what to expect and planned for Jordan and Madison to wait in the car because I thought I had to go into the airport to the baggage claim area. It turns out we picked her up at Air Cargo and didn't have to go anywhere near the airport. Kennedy's flight landed at 5:00pm and we had her in our arms at 5:30. Needless to say, Jordan is sooooo happy to finally have her here. She's been waiting since August 27 (Kennedy's birthday). Kennedy will add so much joy to Jordan's life. She is absolutely adorable and very sweet. In typical puppy fashion, she hops around prancing and following Jordan everywhere. So far, night one, she whined each time she had to go outside to potty and did it again this morning. We have to thank Karen Street. She has given us an amazing gift, in allowing Jordan to purchase Kennedy. If you want to learn more about the breed you can visit Karen's website at www.aliakkennels.com

Day + 145

Day +145

Jordan had a clinic visit today. We went to St. Joes and saw Dr. Wynn. It's been a long time since we've seen him. Her counts are all very good. Platelets were 294, WBC was 6.2, RBC was 11.7, ANC was 5034, FK506 was 9.8. The only level that was low is her IG level at 417 which means she has to get IVIG on Monday at ACH. The need for IVIG happens about every 3 weeks. She also gets to reduce her Prednisone down to 15 mg a day from 20. We are heading the right direction on the Prednisone, hopefully her sypmtoms will decrease soon and she can stop taking insulin shots plus all the other meds she needs to counteract the Prednisone side effects. Her spirits are great, she is getting really excited about Kennedy coming. We finally have the flight information, and she will arrive this Friday the 10th.

We are also closing on our new home next week so we have lots of things going on and will be very busy. We are getting ready for Thanksgiving and can't wait to see Dad, Sharon, Caitlin, Mackenna, Megen, Cody and maybe Dayle. It will be so nice to have a lot of the family together this year. We have a lot to be thankful for.

Thank you for all your continued prayers and good wishes for Jordan. One of our little friends from St. Joes is in need of some extra prayers, please keep her in your thoughts too. Her name is Taylor, you can visit her site at www.caringbridge.org/fl/taylor