Hello all - well, after a really long week, we have more "mixed news". I took Taylor back in today for another bone marrow aspiration. Last Monday her leukemia or blast counts were greater than eight percent. To be considered in remission, you must be less than five percent. Today, she came back as less than 6 percent. So...the question is what does this all mean? There is a not a great answer to this question. Like last week, it come mean one of two things....

First, it could mean that her leukemia has still relapsed and she is not responding. Or, it could mean that her bone marrow needs more time to recover. Like last week, there is a fifty/fifty percent chance. They explained that after a couple rounds of chemotherapy, it can take the bone marrow longer to recover. The cells that they are seeing under the microscope are "immature" cells, so it is difficult to tell if they are leukemia cells or not. I am trying to be positive and be glad that she went from greater than 8 percent to less than 6 percent but it is extremely difficult. They are not able to start chemotherapy until she is less than 5 percent, so we have another week of waiting. At least we are back at home!!

The waiting is so extremely difficult for us. This also means that Taylor will have to have another bone marrow aspiration next week...another "poke", another round of sedative medication, and the waiting!!! She is very nauseated today and threw up in the car coming home from the procedure. Her back (where they poke her) is hurting her so I will giving her pain meds tonight.

All I can say is this week is going to be VERY long (just like last week!).

Thanks for your prayers and support...think we will still be needing them!!

Love,
Kristen

Hello all - hope you are having a great weekend. As I write this blog, a bunch of you are having dinner at the golf charity event for Taylor. For those of you who played golf and/or supported our family at the dinner....thank you so much. We truly appreciate your generosity and support. It is hard to believe how many people that we know and those that we have never met are supporting and praying for Taylor..it is amazing!!

A huge thank you goes out to Tom Margie. Tom is a good friend who was behind the golf tournament. He spent many hours organizing the event and making it a huge success. Thank you also to our many friends who volunteered their time at the event today.....thank you all so much.

I took Taylor and Savannah down to the hospital today to celebrate Aleeya's 3rd birthday. Aleeya has been our roommate during every round of chemo. Going to the birthday party was the highlight of Taylor's "break"....she was so excited to go to a birthday party. The party was really cute. All of Aleeya's family was there. Thank you to Aleeya and her family for letting us celebrate Aleeya's big day.

I will post again on Monday once we find out whether Taylor has gone back into remission or if she has relapsed. We will be re-admitted either way so we will be back at our second home. Please pray for Taylor.....Monday is a big day!!

Thank you again to all who have supported us through prayers, cards, gifts, food and donations. Your support means so much to us.

Love,
Kristen

Hello everyone - just wanted to post quickly to let you all know how much we appreciate your thoughts and prayers since the bad news on Monday. I have been contacted by so many people letting me know that all prayers for Taylor have gone into "over drive". Thank you all for continuing to post on the blog. I still read the posts to Taylor...she loves hearing them. A big thank you to Taylor's nurse, Katie O.....you posting today made Taylor so happy.....we tried to call you but you were not working....she misses you!! Thank you all so much for your prayers....we need it.

Taylor is hanging in there. She is very tired and gets worn out very quickly. Savannah has come down with a stomach bug and was sent home from school today with a low grade fever. She is OK tonight but complains that her stomach hurts!! I just pray that Taylor doesn't get a stomach bug on top of everything else.

I have been meaning to thank all of our dear friends who are working diligently on putting together the golf tournament on Saturday. Your efforts are amazing.....thank you in advance for doing this for us!!!

I apologize for not answering a lot of calls this week. Monday hit me really hard and I have been having a really hard time this week. I am trying hard to pick up my spirits.......just watching how tired Taylor is really scares me. I am trying to think positive....but it is hard.

I will post again in a couple of days to let you all know how Taylor is doing.

Keep praying for Taylor....we appreciate it.

Love,
Kristen

Hello again - so sorry to post again but noticed there was an error in the post from tonight. I talked about Taylor's results after round 1. I meant to say that after round 1 Taylor had <3>8% blasts of leukemia cells. To be considered in remission, you must have <5% blasts. So....she was in remission after Round 1 and now they are considering her to have relapsed until we repeat the test next Monday.

Hope that isn't too confusing.

Thanks,
Kristen

It is with a very sad heart that I post our "mixed results" as the oncologist put it today. Taylor went in for her lumbar puncture and bone marrow aspiration today. The good part of the mixed news is that her lumbar puncture came back clean (no leukemia)....yeah!! The not so good part of the mixed news is that her bone marrow aspiration results have come back that she has relapsed....horrible news!! It is very hard to explain and I don't even understand the news 100% but will try my best to explain it. Leukemia patients have cells in their bone marrow that are called "blasts". These are immature blood cells that either turn into normal mature cells or leukemia cells. Obviously when this all started, Taylor's "blasts" had turned into leukemia cells. After Round 1 of chemotherapy she had <3>8%....not good!!! But.....there is a 50/50 chance that the bone marrow has not had enough time to heal after 2 rounds of chemotherapy and that is why they are seeing an increase of leukemia cells. The doctor explained that this does happen. So....as of today, she has technically relapsed.

The new plan is to keep Taylor at home (that is the only good news out of all of this!!) until next Monday and re-test her bone marrow. So, she will have to have another bone marrow aspiration. The hope is that the blasts have matured into normal cells instead of leukemia cells and that she will have <5% leukemia cells. If she does have <5% on the next bone marrow aspiration, she will be considered back in remission. I asked the doctor what she thought would happen and she said that it could go either way. What we need now is more prayers than ever before!! I didn't think I could be more scared than when she was first diagnosed, but trust me, I am!!!

Taylor had a really hard time with the lumbar puncture and bone marrow aspiration today. She is in a lot of pain and I have had to give her oxycodone every 4 hours since we have gotten home. They did the bone marrow and lumbar puncture really close together on her back and she is very sore from it....poor baby!!! She is asleep already and I pray she sleeps all night....she really needs to recover.

So...until next Monday we are really just waiting AND PRAYING!!! This really wasn't the news that I had expected.....things seemed to be going so well. The question you are all probably asking is what happens if she isn't in remission next Monday.....the answer is, I don't' know. The doctor said that we would talk about that next Monday. If she is in remission (please, please, please!), then she will be admitted for Round 3.

I really don't know what else to say...not a very good day. I am very tired so think I will try to go to bed....long day.

Please pray for Taylor.

Love,
Kristen

TGIF. I hope you are all doing well. We have been busy enjoying a "normal" life again during our 2nd break!! Savannah has stayed home all week to play with Taylor and the girls haven really enjoyed being back together again!!! Taylor is still confined to the house but doesn't really care because she is home!!

I had to take her into the outpatient oncology clinic for a blood draw to make sure her blood counts were recovering. Her counts are good...right where they should be....great news!!! Taylor's RN at the clinic made my day and did Taylor's dressing change for me today. I hate doing it and now Taylor is good until next Friday.

Taylor is scheduled to go back to the outpatient clinic on Monday for her bone marrow aspiration and lumbar puncture. We should have partial results back on Monday afternoon regarding how her bone marrow is responding and the high level testing will take a couple of weeks (like last round). She will receive a dose of chemotherapy in her spine on Monday also. We are not really looking forward to Monday!!!

I put on my best "sales" hat today and begged Taylor's oncologist to not re-admit us on Monday for Round 3. I begged to have a couple of more days at home and it worked. Taylor and I will go back in on Wednesday for Round 3.....every day at home counts and is pure heaven!!

So....that is all. We are looking forward to a weekend at home with both girls. I will post again on Monday night with the results from her bone marrow aspiration....please pray for remission results!!!

Have a great weekend.

Love,
Kristen

Well today was officially a roller coaster!!! Taylor and I woke to bad news...her counts had dropped even lower. She was not going home and we were both devastated with the news!!! We had decided I would go home to spend some time with Savannah and I would see Taylor tomorrow after work. Her counts had dropped so significantly I was thinking she would not even come home on Monday...so we were very disappointed. After talking with her oncologist about her numbers (some of them were way off and very confusing), I headed out for my day with Savannah. The oncologist agreed that the numbers were very strange but assured me there was nothing to be concerned about. She mentioned that leukemia kids bounce up and down in their numbers and it is to be expected. She also mentioned that one of her counts was so "off" that she was going to have Taylor's blood re-drawn and have it run again.

So...you can imagine my surprise when Grandma called me at 3:00 and said "Taylor can go home!!" I couldn't believe it and was so surprised. I spoke to the oncologist and when they re-did her blood counts, they were at an acceptable level and she was free to go. Basically what happened was that there was a "lab error" on her initial draw and the numbers were NOT correct. So.....even though she got to go home, she didn't get out of PCH until about 4:30. Every minute/hour counts when you are on a break so I was a little annoyed. But....she is home!!!! That is all that matters.

So, Sean, Grandma, Taylor, Savannah, and I all enjoyed dinner and watching the girls run and play tonight. I am not sure how long our break is...won't know more until tomorrow when I talk to the doctor. Taylor is thrilled and is fast asleep in her own bed!!!

I will post more when I know what our plan is for the week......we are home!!!

Love,
Kristen

Hello all - we had a "bummer" day. Taylor's counts actually dropped a little so we didn't get to go home. We were both so disappointed. I felt so bad for Taylor....she was really upset. This is all a learning process and moving forward I will make sure that the doctors and nurses don't ever mention that she might go home until it is a done deal....it is too hard on her. If her counts go back up tomorrow, then we will go home but I have a feeling they still won't be high enough. We will see.....

She had a good day playing with Grandma. I had to run errands and get all of Savannah's school items. I brought Savannah back down with me and the girls enjoyed some time together tonight. I will post a picture soon of the girls and I......enjoying time together.

That is all for tonight...please cross all fingers and toes that her counts are high enough tomorrow....we are both SOOOO ready to get out of here!!

Enjoy your Sunday.

TGIF!! Today was a great Friday for us. Taylor finally in on an uphill swing and her counts went WAY up to 170. We have to be at 250 before she gets to go home. They think (unless something happens tonight) will go either Saturday or Sunday!!! Yeah!!! We are SOOOO excited. This has been a long round but it ended well!!! We are scheduled to come into the outpt. oncology clinic on Thursday for her bone marrow aspiration and lumbar puncture. We will then find out the results from Round 2 and when we will start Round 3. If we get out tomorrow (please!!!) we would actually have 2 full weekends at home....not sure what we would do with ourselves!!!

Anyway, she is doing well. Still a little cranky and her appetite is not great, but doing well. She knows she will probably go home this weekend and all she can talk about is "hugging Harley" and "eating teriyaki chicken and noodles"!!! She (we) are all very sad to see Papa leave tomorrow. He has been an amazing help to Sean and I these last 2 weeks and it was great having him here. We already miss you Papa!!!

I will post again and let you all know when we are going home.....hopefully tomorrow.

Have a great weekend,
Love,
Kristen and Taylor

Happy Thursday to all - today ended up being a good day for Taylor. She didn't fall asleep until around 12:30 but slept until 8:30 so at least she got a little rest. We also had a small victory with her blood counts. On her own (no help from medicine), her counts rose a little bit. I am trying not to get too excited unless I see the counts from tomorrow but it was still a rise. A lot of time what happens, is that they rise up one day and go back to zero the next. So....tomorrow will tell alot. If she is up again, then it would be fair to say she is probably on a rising trend. So...keep your fingers crossed.

We also had good news on Savannah. She had her 3 month check up at her GI office. For those that don't know, Savannah has had GERD (Gastro esophageal reflux disease) for a couple years. Lately, she has been doing really well and consistently gaining weight. Again today, I received good news at her check up. She has gained about a two pounds in three months and her GI feels she is finally outgrowing her GERD. She will go back in another 3 months and hopefully we will be able to wean her off her final medication....yeah!!!

That is all for tonight.....I am really going to trying to get Taylor to bed before 9:00 tonight...that would be a miracle!!!

Will update more tomorrow.

Thanks,
Kristen

Happy Wednesday to all!! Last night turned out to be one of Taylor's worst nights. She was awake until 1:30 am. She started in around 9:00 with crying uncontrollably. I finally got her to stop crying uncontrollably but whimpered and cried until the RN finally gave her Benadryl at 1:00. By 1:30 she was asleep but awake again at 7:00.....so, it was a long night for both of us. She still has mouth sores and her body is really hurting. Her counts are still at zero with no sign of rising.

Before I left for work, the oncologists mentioned they were a little concerned that she had been at zero for so long. They are going to see what happens tomorrow but we might have to give her something to give her a "little help." I am not sure what that is but will find out tomorrow. She is receiving a packed red blood cell transfusion right now so hopefully will feel a little better tomorrow. They had also talked to me about giving her more morphine today but they decided against it because her blood pressure was a little lower than they would like for pain medicine. So...she didn't get any pain meds today and she did ok.

On a positive note, our friend Dawson Merrick, who is downstairs in the ICU had a much better day. He is going to be off of his breathing tube tomorrow (hopefully) and is getting better every day. Our other friend, Kate Mcrae, got to go home today. She was our neighbor during our second stay. Her mom and I have become great friends and Taylor and Kate love each other. They actually look alike and everyone thinks they look like sisters. Kate has a brain tumor but is doing well. Her family is an amazing support system to me and her Mom is a great friend. Please pray for both Dawson and Kate...we love them both. To read more about Dawson and Kate, please go to Caring Bridge and type in Dawsonmerrick (no space) and Katemcrae (no space)....their stories are amazing!!!

That is all for tonight...hoping for a better day tomorrow.

Love,
Kristen

Today proved to be another difficult day for Taylor. Her counts are at zero and she still has mouth sores. She is not showing any indication of her counts rebounding at this time....so, as I mentioned before, it is going to be a long stay. She spend the day with Grandma while I worked and enjoyed time with Grandma and Papa but was not herself. I think she is suffering from joint pain from the leukemia and chemo because she keeps telling me "she hurts." I feel so bad for her.

The other sad part of the day was when I took Savannah to school for her 1st day. She woke up excited and in a great mood but as we were driving to school, she kept asking me if Taylor was going to be at school. When I explained that Taylor was still going to be in the hospital and not at school, she started crying. This is really the first, big experience that Savannah has had without Taylor. They have always done everything together!!! She ended up having a great 1st day and loves her new class but was very sad to be going with out Taylor!! So sad!!! It really hit me also that Taylor isn't going to be going back to school for a very long time.....

I can't remember if I ever mentioned how much we appreciate Papa and Grandma Renee helping out with Savannah all last week. Savannah had a great week and enjoyed her special time with them. Papa is still here visiting Taylor and taking and picking up Savannah from school this week and we really appreciate all of his help!! We love you both!!

Back to work for me....will post when I get back from work tomorrow.

Love,
Taylor and Kristen

Hello all - Happy Monday to all of you!! I hope you had a great weekend. We had a crazy weekend. I didn't make it home until Sunday and spent all day Sunday at home with Savannah. Taylor had an OK weekend but was very tired and continued to have no appetite. Currently she has lost 1 1/2 pounds since Friday (which a lot for someone her size). When I got back to the hospital today she has come down with 2 mouth sores and EXTREMELY swollen gums. So....that is why she isn't eating. The oncologist also thinks she might have sores in her esophagus. She is at least drinking some milk and will eat a little yogurt. I ended up having to have the nurses give her a dose of Morphine today because her mouth hurt so bad. She was crying and miserable. The morphine helped with the pain but she still wouldn't eat. At this time, we are just going to monitor her weight loss and see if she can maintain where she is at. Her temperature also spiked up today to just below a fever....so we are praying she makes it through the night without spiking. Her blood counts continue to be ZERO!!! Will she ever go up???? The answer to this question, is yes, but we just don't know when. They told me today that the average length of stay for Round 2 is 35 days!! We are on day 20 so think we have a long couple weeks ahead of us. I keep hoping (like last round) that she will rebound quickly and we will be home.....we will see!!!

So....all in all, it was an OK weekend but she really isn't feeling well today!! I am back home tonight so that I can take Savannah to school tomorrow (first day) and I will be working Tuesday and Wednesday. I will post more later but have a ton of work to catch up on right now.

Thanks,
Kristen and Taylor

TGIF!! Today Taylor awoke feeling crappy. Her counts continue to be a zero and she is really starting to feel it. She has dark circles under her eyes and no appetite today. She has a few bites of food but not much. She still has energy but is extremely cranky. Savannah, Grandma Renee and Papa came to visit and she and Savannah played. After they left, she asked me if I could "rock her to sleep". She was out quickly and has been sleeping for about an hour!!! I think she is either coming down with a bug or the chemo is finally hitting her. Either way, her nose is running, her temperature is creeping up and she just doesn't feel good!!!

I am doing my best to keep her as clean and sterile as possible!! So...again, we appreciate you all understanding that we are not having visitors right now. As much as we would LOVE to see all of you, I am trying so hard to keep her sterile...hope you all understand!!

Have a great weekend. I am going home Saturday and Sunday to be with Savannah....will post again Monday night!!!

Love to all,
Taylor and Kristen

Day 16 and she still has a smile on her face. She made it through the night without any problems and is hanging in there. Her blood counts are still at zero. We woke to a scare from her nurse. They draw blood from one of Taylor's line's every day at 5:00am. This blood work is what show her blood counts. Her RBC showed up as being dangerously low today. This was extremely concerning because she had received a RBC transfusion. Her RBC should have increased overnight. So.....they had to re-do her labs at 8:30 this. I was scared to death because if her RBC count came back low it would probably mean she was bleeding internally!! So.....we waited and THANK GOD her RBC came back at an acceptable level. They think that there was a lab error on the first reading!! After a mini panic attack on my part, things were fine!!!!

I actually left today and spent a great morning at the Children's Museum with my Dad (Papa) and Savannah. Grandma Renee (my step-mom) stayed with Taylor and had a great time. They enjoyed a good morning together. Savannah, Papa, and I had a FABULOUS day at the museum and went out to lunch. It was great to have some fun time with Savannah and Papa......I miss Savannah so much!!!

After coming back, Taylor and I enjoyed a great afternoon and evening together. I had a conference with her oncologist and at this point we are just in holding mode until counts rise and we can go home (they think about 2 more weeks!!).

I am just getting ready to get Taylor to bed.....hope you all have a great night!!

Please pray for Dawson Merrick...he needs tons of prayers right now.

Love to all,
Kristen and Taylor

Hello all - very quick post today. Taylor has been up since 6:40 this morning and is still awake (at 9:20). She is watching a movie right now as I am typing, but I need to get her to sleep.

She received platelets and packed Red blood cells today. With each, she received a dose of Benadryl and still hasn't taken a nap and won't sleep! We also just gave her tylenol because she is complaining of a headache. She is very close to spiking a fever, so it is going to be a LONG night.

She is still in great spirits and going like crazy!!!

I will post again tomorrow after we have gotten some sleep (I hope!!)

Love,
Kristen

We are officially at Zero!!! Her WBC is at zero and her ANC (Absolute Neutrophil Count - which determines if we can leave the room or not) is at zero. So...now we wait. Taylor will most likely hold around zero for a week to 2 weeks and then come up. She needs both platelets and a packed red blood transfusion either tonight or tomorrow. Her platelets are so low that she is starting to getting little red bumps (Petichia) all over. This means that her blood is not clotting enough. If she doesn't start bleeding (her nose, gums,etc) then we will wait until tomorrow, if she does start bleeding it will be done STAT! So, we are living in as sterile bubble right now. I am sterilizing everything that she comes in contact with and we are now giving her sponge baths 2 times/day. She is so susceptible to germs right now that I am trying everything I can to keep her infection free!!!

She is still in great spirits. She played all day and enjoyed time with her new roommate. She really wants to get out of her room but no such luck!! Other than that...we are just hanging out waiting for her counts to rise up!

That is all for today...we hope you are all doing well.

Love,
Kristen and Taylor

Hello all - hope you had a great weekend. We had a crazy couple of days at the hospital but things are back on track now. I went home on Saturday to be with Savannah and was called back down to the hospital on Saturday evening because Taylor had to change rooms. So, I came back down to help my mom move her into her new room. We got her settled around 9:30 and I was off to sleep in my own bed. I received a call on Sunday that we were being moved again...so much fun!! The kicker is that we got moved back into the room we moved out of the night before!!! Anyway...the good news is that we are back in the biggest room on the floor and have a nice, new roommate.

I got back to the hospital early this morning to find Taylor's count at 8 or as close to zero as she can get. So....now we wait and pray that she doesn't get a fever or infection. She will probably hang around at zero for about 10 days and then start to come back up....once we get to 250, we will be home for our second break....yeah. I hope that we will be home in about 2 1/2 weeks!! Taylor is doing really well. She has a ton of energy and is in GREAT spirits. Because her counts are so low, we are going to go back to our "bubble" and ask that we have no visitors until her counts come back up (I will let you all know)!! She is just at such high risk for infection that we are going to be extra careful.....thank you all for understanding!!

So far she hasn't gotten any mouth sores....lets pray it continues on this way!! Her hair is a little bit thinner but hanging in there!!! She does have her rash that she got last time but it comes and goes...it also does not bother her. She is really doing amazingly well!!

Again, thank you all for the great presents for Taylor and Savannah this round. They love their new crafts and we appreciate your generosity!!

Please say an extra prayer for our friend, Dawson Merrick. He is in ICU going through alot right now.l Dawson - we love you and are praying for you every day. We want you to come back up to the 2nd floor and be our neighbor!!

Love to all,
Kristen and Taylor