Hello all - quick post as I am home for the night and going to try to relax before I go back tomorrow. Taylor ended up sleeping all night (except for being woken up every 4 hours for vitals!). She seemed to feel a little better this morning and said she was hungry. She at 2 bites of pancakes and refused any more. I finally got a Gogurt in her but that was all. She ate another Gogurt at lunch but would not eat anything else.

I talked with one of her doctors this morning and asked for a slight change in her Zofran (nausea medication). During the past 2 rounds it was given every 4 hours around the clock. For some reason this round, it is only give as one large dose, one time/day. I was thinking that maybe it isn't working as well this way because she is so nauseated. So....the Zofran is being changed back to the way it was. I hope this might make a difference and she might possibly eat a little better.

She enjoyed a visit from her good friend Maggie Siegel. Maggie is another leukemia patient that has come into our live....they are an amazing family and have helped us so much. Maggie is done with treatment and doing well. Maggie's mom, Leslie, has been great to me and helps me get through this horrible ordeal!!! I will post a picture of Taylor and Maggie riding in the wagon.

Grandma and Savannah came down and Grandma is staying with Taylor tonight. I enjoyed a couple of hours with Savannah and came home to a huge dose of reality. I signed Taylor up for the Make a Wish program and I received a letter today saying that Taylor has been accepted and will become a Wish Child. While this is great and Taylor will get an amazing wish granted, this is very bittersweet to me. This only reminds me that Taylor has a life threatening illness.....WOW!!! I don't mean this to sound ungrateful, I just never thought I would be participating in Make A Wish for my child. I am pretty sure that Taylor will "wish" for a trip to Disneyland and I am so excited that this might happen. I just "wish" that we were going to Disneyland for "other" reasons. This is just so hard.....

Going to try to catch up on mindless TV....will post again tomorrow night when I get back to PCH.

Quick side note....Toby - I read your post, please stop by the next time you are down visiting Leo....would love to meet you.

Thanks,
Kristen

TGIF - hope you have all had a great week. Last night didn't end very well. Taylor got very agitated and threw up a couple of times. She finally feel asleep around 11:00 and ended up sleeping fairly well. One of the chemotherapy drugs that she received can cause very bad conjunctivitis (pink eye) so she has to take eye drops preventatively. The only disadvantage of this is that the eye drops are given every 4 hours (2 drops in each eye) so she has to be woken up for them. Luckily they are timed with her vital signs so they do it all at the same time. Never the less, she hates getting them (I don't blame her!!).

She woke up early today and ate a good breakfast. She hasn't eaten well since we have gotten back to the hospital so I was very excited. Unfortunately, she has refused to take another bite of food since breakfast. The doses of her chemo are much larger and stronger than the previous rounds and they seem to be hitting her really hard. She complained of a headache so I tried giving her Tylenol around 6:00 pm and she started throwing up. She feel asleep at 6:30 and is still sleeping. I pray that she will sleep through the night...she is very tired. Her chemo rash has spread down to her legs and she looks fairly red. Almost all of her eye lashes have fallen out and her hair is almost all gone....she truly looks like a cancer patient.

I had another dose of reality tonight.....there was a "code" on the other side of Taylor's floor and the RN said that it doesn't look as if the child will make it.....WOW...that is alot to take in. It really reminds me how scary all of this is.

I have had the opportunity to make another new friend on Taylor's floor. A little boy named Leo Weber was admitted to PCH a couple of weeks ago with Stage 4 Lymphoma. He goes to the JCC for preschool and a bunch of our friends at the preschool know his family. I found them and his mom and I have become fast friends. Please add Leo and his family to your prayers.

Taylor did have one bit of happiness today. Her BFF at PCH, Aleeya, is back and we are now all roommates again. This is Aleeya's last round of treatment. Please pray for a good round for Aleeya.

Have a great weekend.

Love,
Kristen and Taylor

Only time for a quick post tonight. I was not able to get Taylor to bed until 1:30am last night....it was such a long day. She ended up vomiting quite a bit and had a terrible stomach ache. She woke up at 6:00am screaming that her stomach hurt and vomited all over me and her. She feel back asleep until about 9:30 and then had an OK day. She has already had 3 doses of her chemotherapy and will have her next dose at 10:00 tonight. Her face has a rash all over it and the rash is starting to move to her arm...this is most likely a side effect from the chemo. I just wasn't expecting it to start so soon! Her favorite day RN took care of her today so that made her day. She had to have her dressing changed and did very well with it.

Her roommate from last night moved out (yeah) of the room today and we are now in with a very sweet girl who is a year younger that Taylor....they are getting along very well. Her favorite night RN is taking care of her so she is doing everything she can to stay awake to see her!!! She is VERY tired and complaining that her stomach hurts again.....so much fun!!

The hardest part of today was her asking me over and over again "when can we go home....I don't want to stay here." I hate telling her that we will be here for weeks and weeks!!!

Have to run....she is looking extremely pale....think she might throw up!!

More tomorrow...

Love,
Kristen

Hello all - I never thought that I would be happy to be back in the hospital watching chemotherapy drip into Taylor, but I am!! Yes, she was admitted today and we have started Round 3 of her treatment. She had her 3rd bone marrow aspiration in 3 weeks today and her "blast" cells had recovered enough that she was able to start treatment.

We have had a really long day today. Her bone marrow aspiration was at 1:30. We got admitted to PCH around 5:30 and came up to her room. The roommate situation is less than ideal but we will hopefully change rooms tomorrow. Her roommate is a 15 year old boy who watches TV with the volume full blast. For some reason (they don't tell me for confidentiality reasons), Taylor is not allowed to use the bathroom in the room because he is using it. So....we have a bedside commode!! She is less than happy about that and hates using it. I am praying we do actually get moved tomorrow.

She has been throwing up for about 3 hours. The medication they gave her today for the bone marrow aspiration really made her sick this time. I also had them give her pain medication because her back always hurts so bad....that could be making her sick also. Welcome back!!! I finally have her settled down and she is watching TV (she has been awake since 6:30 am with no nap!!). So...it has been a really long day!!!

Her chemotherapy will go for 5 days this round. Most patients have a harder time with this round of treatment, but every child responds differently. Hopefully Taylor will do OK. She is already asking me "when do we get to go home???"

That is all for tonight....I am exhausted. Thank you all so much for your prayers these last 3 weeks. Please continue to pray that this round is not to terrible for Taylor.

Love,
Kristen

Hello all - yesterday was the start of Children's Cancer Month. Please see the astonishing statistics below:

Each school day, 46 children are diagnosed with cancer.
One in 330 children will develop cancer by age 20.
Each year in the U.S. over 12,600 children are diagnosed with cancer.
Although the 5 year survival rate is steadily increasing, one quarter of children diagnosed with cancer will die 5 years from the time of diagnosis.
Cancer remains the number one disease killer of America's children - more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.
80% of children have metastatic disease at time of diagnosis as compared to only 20% of adults.
There are currently more than 270,000 childhood cancer survivors in the U.S.
Late effects of childhood cancer treatment are common in survivors, and approximately one-third are moderate to severe.

Please continue to pray for Taylor. Also, please pray for our good friends, Alleya Guerreva, Dawson Merrick, Elijah Rubio, and Kate Mackrae.

Love,

Kristen

Hello all - I wish that this post came with better news but wanted to clarify some information from yesterday. After talking to Taylor's clinic RN, I wanted to clarify the drop in her immature cells from greater than 8 to less than 6. Even though the numbers decreased, it is still a major set back. Because her immature cells are not maturing, it is pushing her entire treatment regimen back. What this means is that, there is a great opportunity for new leukemia cells to start producing while we are "waiting." The goal of treatment is to hit the leukemia cells extremely hard with very little time to recover. We are now 2 weeks behind and still don't know when Round 3 will start. Her next bone marrow aspiration is scheduled for next Wednesday at 1:30. If her "blast" cells are below 5, we will be admitted for Round 3. So.....even if we do get back to less than 5 percent it is not the ideal treatment time period.

I know this post is probably not what everyone wanted to hear because I think the majority of our friends are just focusing on the fact that Taylor went from 8 percent to less than 6 percent. Yes, she did drop but the time frame that she is dropping in is very concerning. I guess all we can do is continue to pray.....

Thank you for your support. Again, I wanted to thank all of friends (especially Tom Margie and Jessica Lilley) for their amazing dedication and hard work on the golf tournament.......we have amazing friends!!!

Love,
Kristen