Happy Halloween. Attached are pictures of the girls from today. I spent the morning with Taylor and afternoon with Savannah. It was great being with them, but horrible being with them seperately!!! Savannah started crying tonight because she missed Taylor so much!! This is just no fun!!!

Quick post tonight as I have a splitting headache!! Taylor was not feeling well for most of the day. She threw up her dose of Tamiflu this morning and would not eat anything. Her lungs are still clear and have no evidence of pneumonia. She finally agreed to try a banana after I threatened her (I hate doing this!!) with them putting a tube down her nose. This seemed to work because she did eat almost a whole banana....yeah!!! She was very lethargic for most of the day but seemed to get a little energy late afternoon. She did a couple of puzzles and practiced writing her name. She ended up eating a small piece of pizza tonight.....yeah!!! She says she feels better but is just tired and coughing a ton. She didn't get much sleep last night from all of her coughing. So....she is watching a movie and is almost asleep.

Her blood counts are dropping quickly. I never thought I would be excited about this but I am....the sooner her counts get to zero, the sooner she comes back up!!!! I am hoping she will be at zero by early next week.

I am hoping the worst of the flu is over and she will feel better tomorrow and start eating. They have agreed to hold off on a NG (tube down her nose to give food) for a couple of days. I really don't want her to go through this. As long as she eats a little bit each day, I think she will be safe!! Let's hope!!

I am going home tomorrow afternoon to spend some time with Savannah on Halloween. I will post again when I get back.

Happy Halloween.

Another fun day at PCH!!! Taylor coughed most of the night and was still coughing this morning. So, they decided to swab her again to see if something else was going on. She tested positive for H1N1....seriously!!! They were also concerned that she might have pneumonia so she was taken down for a chest x-ray. Luckily her lungs are clear and she doesn't have pneumonia. They are re-starting her on Tamiflu. She will get chest x-rays every 2-3 days for awhile to make sure her lungs stay clear. She had a pretty good morning but started throwing up this afternoon. She threw up a couple of times and then seemed fine. She has not eaten 1 bite of food today and just threw up again about 5 times. They are going to give her a second nausea medication to see if that will help. She is also getting a blood transfusion tonight. So....alot going on today!!!

Hopefully tomorrow will be a better day. For those of you who had expressed interest in visiting over the next couple of days, please hold off. We are in isolation and they don't want any visitors for a couple of days.

Aleeya is still in the PICU. She has a bacterial infection and her body went into septic shock. She is on numerous antibiotics and blood pressure medications. Her blood pressure has been really low. She will stay in the PICU until they can get her infection under control and then back up to the 2nd floor. They don't think this has anything to do with her leukemia. As far as I know, she is still in remission, but very sick. Please continue to pray for her.

Thank you all for your prayers for Taylor....she needs them right now.

Kristen

Another post for tonight unrelated to Taylor. I just came up from the ER at PCH. Unfortunately, I was with my good friend Athena and her daughter Aleeya. As many of you know, Aleeya has been Taylor's roommate and BFF since she was diagnosed with Leukemia. Aleeya finished all of her rounds of chemotherapy about 2 weeks ago. Her parents brought her in tonight with a fever around 104. After 2 doses of Tylenol, her fever still hasn't broken. They are thinking she might have an infection in her Central line. She is being admitted to ICU as I type. Please, please pray for her. Her mom is very scared and Aleeya is very sick. She needs all of our prayers right now.

Have I mentioned lately how much I DESPISE all of this. When is it going to get better????

Quick post tonight as I am trying to get Taylor to bed early. We had an absolutely miserable night. She fell asleep at a decent time but I had to wake her up at 10:00 to take Tylenol. This was necessary to help with any reaction to the chemotherapy. As you can imagine, she was not happy about being woken up and having to take medicine. Since all of this has started, she despises the taste of Tylenol. She spits it out every time she has to take it. So having to be woken up to take this was no fun. She was really upset....kicking, hitting and screaming. I finally got most of the dose in her and she threw it right back up!!! They then started her chemotherapy. Because of the type of chemo and the intensity, it was necessary to monitor her blood pressure, temperature, heart rate, and oxygen level every 15 minutes for an hour. Then, it had to be done every half and hour for an hour. Then it had to be done every hour for 6 hours. So.....as you can imagine, there was no sleep. She was miserable with being hooked up to the vitals machine. She would just fall asleep and the machine would go off. I think it would be safe to say, she/I slept about 1 hour total last night. She is exhausted. She has not done much all day. Her stomach is hurting and she has no appetite. All she has eaten today is a banana. I think that her eye infection is starting again in her left eye. She wanted the shades down all day and no lights on. She rubbed her eye all day. Her cough has also come back today. Because she is coughing again, they think the Influenza A is coming back. This is very common when immunocompromised kids get the flu. They can have symptoms for a few days then they go away and come back again. So.....because she has already had Tamiflu, she can't have it again. Not sure what they are going to do....we should know more tomorrow. Today definetely was not her best day.

I wanted to also provide guidelines for anyone who is going to get the H1N1 vaccination or if they are getting it for their kids. If you or your children get the "live" virus (nasal mist), please do not plan on visiting Taylor for at least 7 days. Because the virus is considered "live", it could be passed onto her. If you or your children get the H1N1 "dead" virus (shot), you are fine to visit right away. I hope this makes sense......we can't expose Taylor to the "live" virus.

Off to get her to bed and to go to bed myself. I am working tomorrow so need to get some sleep.

Hope you had a good day.

Kristen

Day 7 of Round 4. Taylor has one more dose of chemotherapy for this round. She will receive her chemotherapy tonight at 10:30 pm. This medication is the study medication that she is on. She received one dose in her first round of treatment. The first time she received the medication she vomited quite a bit. Tonight she will be given Tylenol, Benadryl, and Zofran to help with any possible reaction and nausea. The chemotherapy has to be covered in a bag to protect if from any light so it is good that it will be given at night!! How scary is that....the drug can't be exposed to any light but we are pumping it into her system!!! After tonight her chemotherapy will be over. So...we wait. Her counts are still high right now. They dropped alot from yesterday to today so we are thinking they will drop alot more again tomorrow.

She felt pretty good today. She is eating a little bit....not normal amounts but at least getting something. She had a really rough night last night. She/I have been awake since 4:00 am!! They came in to do vitals and a blood draw at 4:00 and woke her up and she would not go back to sleep. So...she is extremely tired. I went home for a couple of hours to do laundry and take Savannah to get her H1N1 vaccination. Taylor had a great time playing with Papa and Grandma Renee. She is really tired and already in bed watching TV. I hope she falls asleep....she needs the rest.

I will let you all know how tonight goes.....pray for the best. I also ran into Elijah's mom. He is still in the PICU but holding his own....please keep praying for Elijah.

Thanks,
Kristen

Hello all - I hope you all had a great Sunday. Taylor had a decent couple of days but is very tired and not eating. She has not been sleeping well at night and I think she has gotten herself exhausted.

Yesterday, I went home to see Savannah for a couple of hours. We met some of our friends at a Fall Festival and went to a Spooktacular. Savannah had a great time and loved being with friends. Taylor played with Daddy, Grandma, and Papa and had a good day. Her rash came back again yesterday but it is still manageable.

Today, she woke up complaining that her stomach hurt. She is getting Zofran around the clock. She hasn't thrown up these last couple of days but had NO desire to eat today. She had a granola bar and would not eat any lunch. Grandma came and we decorated cookies and she ate one but would not eat any dinner or have any more cookies. She told me at 6:00 that she was "too tired" and we are now laying in bed watching Mickey Mouse!!! Aunt Betty and Papa also came today so she had fun with them. A couple of her friends from the 2nd floor stopped down so that brightened her day!!!

She has 2 more doses of her "blue" chemotherapy. She will also get a dose of the chemotherapy for the study that she is on. So...we are almost done with the chemotherapy for this round. Then the fun waiting game starts......is she going to get a fever, is she going to get mouth sores, is she going to eat????? So much fun......

That is all for tonight. I am SOOO tired so think I will try to go to bed when she does.

Have a great Monday,

Kristen