I had high hopes that yesterday was just a bad day and that today would be SO much better. I was sadly mistaken. Taylor spiked a fever in the middle of the night. She immediately had blood cultures drawn and was started on "triples". Triples are 3 extremely strong IV antibiotics. They cover a wide spread bunch of bugs. Because of this, Taylor was put on room isolation for the day. This meant no visitors (daddy, grandma, or Savannah). I had to wear a gown, mask, and gloves each time I left the room. As of about 2:00 this afternoon, her blood had not "grown" any infection, so they thought the fever was just from her blood counts being so low. The antibiotics are being kept running for 3 days as a precaution.

Taylor has developed very swollen gums and is starting to get mouth sores. This is another wonderful side effect of the chemotherapy. Because of this, she really is not eating at all. I am able to get a couple of bites of food down her and some GoGurts. She also ate some frosting off of a couple of cupcakes. She is down almost 2 pounds. The doctors will be talking to me tomorrow about what needs to be done. She will most likely need the NG (down her nose) for nutrition.

She was actually in better spirits today and out of bed most of the day. She is still extremely hard to please but we had a few laughs today!!!

They just did her PM vitals and she has spiked a fever again....not good news. This will mean she is back on "room isolation" tomorrow....oh how fun!!!

Not much good news today....hopefully tomorrow is better.

XOXO
Kristen

This was a really long Monday!!! Taylor is at day 2 of her blood counts all being at zero. She will be getting platelets again tonight. She had a really tough day....she has no energy, no appetite, but has a strong TEMPER!!! Mommy could not do anything to please her today. She (and I) are both over all the craziness. Today we saw 5 doctors - oncologist, oncologist NP, infectious disease, dermatology, and general pediatrics!!! Her rash is still very bright but is not bothering her. She is borderline for a fever, but so far hasn't needed anything for it.

I was under the impression that once her blood counts hit zero, they would rise up right away. I was informed today that is not the case. She will hover around zero for roughly a week. Because of this, we are still asking for no visitors. She is just at such a high risk that we are trying to keep her in a bubble!! Once her counts start to rise, we would LOVE visitors.

As for Taylor's hair...it is almost gone!! She told me today that her "friends won't want to play with her because she doesn't have hair!!" Through tears, I explained that is not the case....breaks my heart!!!

That is really all for today....hope you all had a great Monday!
Love,
Taylor and Kristen

Hello all - I am back at my "second home"....PCH!!! 48 hours away from Taylor....although, it was GREAT to be with Savannah, it was really hard to be away from Taylor. Like I have mentioned before, balancing my two beautiful babies is so hard. I am glad to be back with Taylor but already missing Savannah and HARLEY!! Out poor Harley is getting lost in the shuffle. He had a good day today....he got to go swimming with Savannah and I...he also slept on the bed next to me all night last night!!!

Walking into Taylor's room today and finding her with very little hair left was so hard. She will most likely lose ALL her hair by Tuesday or Wednesday. I ended up cutting alot of hair off to make it more one length. She had lost so much in the back and there were so many long hair left hanging...my mom and I thought it would be better to try to even it up. No matter what...she looks beautiful!!!

A dermatologist came by to see her today and feels that the red rash on her cheeks, arms, and ears is a side effect/drug reaction to one of the chemotherapy drugs. They aren't going to do anything right now..just watch to make sure it doesn't get worse. It doesn't seem to be bothering her.

Savannah was not able to come down with me today to visit "sissy". She has a runny nose...it might be allergies, but it might also be a cold. We decided it wasn't worth possibly infecting Taylor. A big thank you to Marty, Taylor and Cameron Dempsey for watching Savannah for us for a couple of hours. Hopefully Savannah will be down this week...they both really miss each other.

As always, thanks for the posts and comments....they are the highlight of our day. We love you all,
Taylor and Kristen

Happy 4th of July!! I hope you are all enjoying your holiday weekend.

I am still at home. I am going to stay home again tonight with Savannah and Sean is going to go down and relieve Grandma at the hospital. It is SO hard being away but great to be with Savannah.....it is so hard to balance this all!!!

Taylor's rash is getting worse...the doctors have asked for a Dermatology consult....keep praying it is not an infection. She still doesn't have a fever so that is a positive sign. Her blood levels are at the lowest they can be. The only good thing about that is they will slowly start to rise and she will feel better. I am hoping another couple weeks and we will be home for our first break.

Quick post today...trying to be with Savannah and get all of my "stuff" done around the house. A special thanks to Grandma for staying last night......we would not know what to do with out you....

Love,
Kristen

TGIF!! I hope you are all having a great start to your Holiday weekend.

There is really no change from yesterday. Taylor continues to feel "crappy" and is not eating well. She has developed a rash on her cheeks and arms. They are not sure if it is a possible viral rash or a side effect from one of the chemo drugs. They are just watching it for now.

Taylor had her bandage change over her central line today. Just like last time, it was horrible. Her skin is extremely sensitive and bruised from the last bandage. Once she comes home, I will responsible for doing the dressing changes every Friday....that should be tons of fun!!!

I am at home tonight spending some much need time with Savannah. We did crafts, played games, and read books. She is being such a good girl and I miss her so much!!! I am planning on spending all day with her tomorrow!!! It is good to be home!!!

Have a great 4th....will update again tomorrow.

Love,
Kristen

Good morning everyone - hope you are having a great day.

Taylor slept really well last night. She is again not feeling well, her blood counts continue to drop and her chance of fever right now is about 100%. Hopefully if/when she gets a fever, it will be contained with Tylenol, but they say you never know. Just because she gets a fever doesn't mean she will end up in the ICU, so please pray that doesn't happen.

Her hair if "officially" not starting to thin out, it is falling out by the handfuls. Taylor and I have been talking about it alot today. I also purchased some fancy headband and she is excited to start wearing them. She has decided she wants to wait until the hair is all gone before she wears them......whatever works!! I am still devastated by the hair loss but know that is the least of our problems. Like my good friend, Sheri, said....this just SUCKS!!!

Savannah, my other angel, was a very strong, brave sister today. Savannah and Mommy went and had her blood drawn to see if she is a potential bone marrow donor for Taylor. She was so good about it....I think I cried harder than she did. I just sat there thinking, "what if she comes back with leukemia?" I am really trying not to think about it.....I am just praying she is a match for her sister. At first, I was not sure about having Savannah donate bone marrow for Taylor.....I didn't want her to go through it. But, if she is, we will most likely have her donate to Taylor because it is Taylor's best hope for complete remission. One day at a time.....the results should be back next week.

I would ask all of you that are praying for Taylor to add her roommate, Elijah Rubio, to your prayers. He is a 2 year Down Syndrome child with AML. Elijah has completed 2 rounds of chemo and got to go home today for a 10 day break. I don't know yet what happened, but I do know that his parents received really bad news from the doctors today. I have come to love Elijah and his family so much over the past 13 days. His mother and I pray together every night before we go to sleep. Please add them to your prayers....they need it!!

Nothing much more happening.....talk to you all tomorrow.

Love,
Kristen and Taylor

I can't believe it is July 1!!! Today is definitely not one of Taylor's good days. She is feeling absolutely crappy. She (we) did not sleep well. All she has wants to do today is watch movies, do a few crafts, and has been sleeping since about 12:45. Her oncologist just came by and said this is to be expected. Her blood counts are so low.....she explained that Taylor probably feels like "she has been run over"!! I feel so bad for my poor Tay-Tay. I wish it were me instead of her.

Today is not one of my best days either. Taylor doesn't know this but when I brushed her hair this morning, I noticed it is starting to really thin out. There was TONS of hair in the brush and even a few long strands hanging down. I know that in the big picture of things, Taylor losing her hair is not a big deal....but it is a big deal to a mom!!!! It makes me so sad. I know that Taylor is beautiful with or with out hair but know that having no hair is going to be really scary to her!!! I keep telling myself that this means the chemo is working and she is on her way to better health.....but, it is hard to see!!!

That is all for today.....going to sit outside for a few minutes while she is sleeping. I need some fresh air!!! Who would have ever thought that I would want to be outside in July!!!!

Take care,
Kristen and Taylor