Hello all - wanted to quickly post as Taylor is taking a nap. After a long night (for me, Taylor slept all night, I could not sleep a wink!!) Taylor woke up feeling a little better. Her eyes are better but not normal. We are still on the 2nd floor and have not been moved to isolation. Taylor has always gotten a rash from one of her chemotherapy medications and they really think that this rash has hit her really hard this round. Normally Taylor gets the rash a few weeks after the chemo is done. This time she got the rash on Day 1 and it has been much worse. They now think the rash has moved into her eyes and that is what is causing her eyes to be so red and painful. As I mentioned, her eyes are better but still affected. She still can not tolerate any light so we either stay in her dark room or she wears sunglasses. Her nose is still running but it has not gotten worse. She is definitely not feeling great today but better than yesterday. She still wants me to either hold her or rock her all the time. She did get a small burst of energy and ran around the hall for a little bit. So.....we again wait and hope the rash goes away!!!!

Until the rash in her eyes is gone, we will not be having any outside visitors. It is just to risky to Taylor. Thank you all for your thoughts and prayers. Yesterday was so scary for me and so hard for Taylor because she felt so bad. Hoping tomorrow will be better. Taylor's counts are dropping each day and we will most likely be confined to the room by Friday...so much fun!!!

As long as Taylor is doing ok, I will still be going down to the cafeteria tomorrow at 4:20 for the radiothon. Please listen in if you can. It will be on KTAR (AM in Arizona) or you can listen in at www.ktar.com.

On a side note, please pray for our friends Dawson and Kate. Dawson received a 2nd round of bone marrow yesterday and is still in ICU. Kate is having a MRI today to determine if the chemo has helped her brain tumor. They desperately need our prayers.

Thanks,
Kristen

Well, I am not sure where to start. So much has happened in the last 24 hours. It all started last night while Taylor was getting her blood transfusion. During a transfusion, they check blood pressures every hour to make sure all is ok. Taylor had 3 really low pressures that were a little concerning. Then, her last bp came back up and she seemed fine. She slept pretty well but woke up feeling really sick. She threw up first thing this AM and started rubbing her eyes constantly. With in about an hour of waking, her eyes were extremely red, swollen, and the skin around her eyes was red and blotchy. She was screaming that her eyes hurt and didn't want any lights on. She also had a runny nose. She has been getting eye drops every 4 hours since last Wednesday because of one of the side effects of the chemo that she received is conjunctivitis. So.....they weren't really sure what was going on. Her eyes looked terrible and she was very uncomfortable. They gave her a dose of Benadrly around 11:00 to see if this would help. It did not. As the day continued her eyes got worse as did her runny nose. She would NOT let me put her down or let me out of her sight. We found a rocking chair and I rocked her for about 2 hours while she covered her face with a blanket. Around 3:30, they decided to give her a dose of Claritin (by mouth) to rule out possible allergies. She threw the medicine right up. So.....they got her a dose of Claritin in pill form and we crushed it and she took it in some yogurt. She kept that down but it really didn't seem to help.

They gave her another dose of Benadryl at 6:30 and it knocked her out. Her previous rash has now come back and is covering her face and body. At least she is sleeping.

The plan now in the morning is to move her to the 3rd floor into an isolation room. She will receive a nasal swab to test for 9 different viruses. She and I will stay in isolation until the virus test either grows something or doesn't grow something. If it does, she will be given the necessary treatment and if it doesn't show anything, we will hopefully be moved back to the 2nd floor (we would stay in isolation either way for a couple of days). Her eyes are really painful to even look at....you can just tell how much pain she is in. She can't even watch TV because the light hurts her too much.

The doctor has asked for no visitors until we get this all figured out. Because her body can't fight off any infections, we have to be extra careful right now. Unfortunately, Sean, Savannah, or Grandma are not even going to be able to visit until this is figured out.

So...please pray...this is very scary and she is not doing very well.

I will post more as I get more information. Thanks to Sheri for sending out a message to everyone today.

Love,
Kristen

IMPORTANT MESSAGE

Hi, it's Sheri. Kristen asked me to let everyone know that Taylor is NOT allowed to have ANY visitors until further notice. She will update us as to why in the next day or two. She didn't give me any details but just asked that I please post a "no visitors" update. Thanks!

Quick update....Taylor had a very "clingy" day and won't let me have a moment to do anything. She is currently getting a blood transfusion which should help her. She was really out of sorts today and just didn't feel great. Her rash continues to be annoying and itchy.

She did eat today...yeah!! We also changed rooms. Taylor and her roommate, Aleeya, are back in the "suite"....the big room on the floor...yeah, they were both happy about that.

No time now, will post more tomorrow...she wants me to lay with her....

Love,
Kristen

Hello all - Happy Sunday. I hope you had a great weekend. After a quick 24 hour break, I am back with Taylor. She seems to be feeling better tonight and actually ate an entire bagel for me. I brought it from home and wanted it "dry" but ate all of it. Her rash is much worse and is bothering her. She is itchy all over. She got Benadryl tonight for it but it doesn't seem to be working. They are checking right now to see what else she can have. She is covered in this chemo rash from head to toe. She even has it on her eyelids!! Poor baby!! Tomorrow is her last dose of chemo for this round...thank goodness!! Now the waiting begins....when will she get to zero, will she get a fever, will she get an infection, will she get mouth sores, etc. This stinks!!! All we can do is pray for an easy round.

I wanted to let all of you know that I have been asked to share Taylor's story during a live radio feed from the cafeteria at PCH on Thursday. Below, please find the information that I have received on the event:

• It is the ninth year for this radiothon fundraiser at Phoenix Children’s Hospital. There’s no better way to let our community know what a special place Phoenix Children’s is than through the eyes and experiences of our patients and families.
• Radiothon will broadcast live on KTAR’s 92.3 FM, 620 am, and stream live on their website at www.ktar.com
• I am scheduled at 4:20 pm on Thursday, September 17th.

If you are able and interested, please listen in. The radiothon will go all day on the 16th and 17th.

That's all for tonight...need to get her something else for the itching!!

Have a great week.

Love,

Kristen