Nothing much has changed. Taylor spiked 2 fevers in the night, 1 fever during the day, continued with the diarrhea and vomited up her Tylenol. She did have energy to get dressed and walk to the bathroom today. She even let me paint her nails but was soon back in back asking for pain meds. She slept for a couple of hours. She was taken down for an abdominal and lung CT today. We didn't go down until late so we don't know the results. Her ANC did increase today but her WBC's are not increasing like they should. She tried to eat a few crackers and soup tonight but stopped because it was hurting her stomach too much. So...until I know more about the CT there is not much more to say.

We were both up every hour last night for different meds, vitals, etc. I am tired!!!

Unfortunately, today brought much of the same. Taylor continued to spike fevers , threw up, and had diarrhea all night. She got morphine and nausea medication throughout the night but could not sleep well. She just doesn't feel well.

She was in bed the entire day, watched TV and slept. She received another platelet transfusion because she did not receive any bump from the transfusion the day before. She refuses to walk even to the bathroom....she will only use the bathroom if I will carry her. She refuses to let the RN's or PCT's do any of her vital signs. She will only allow me to do.....she is just so done with this whole process. She had one of her favorite RN's today who offered to paint her nails while she watched TV and Taylor did not feel well enough to even do that.

About 5:30 Taylor's blood pressure dropped again. She had to have another bolus of fluid and was sent down for a Stat chest and abdominal Xray. We are waiting for the results of the Xray right now. Her blood pressure has come up a little but not where they would like the numbers to be. So...she will get blood pressures every hour tonight along with being hooked up to a oxygen saturation machine all night.....she is not very happy about this.

She will go down for another CT tomorrow to try to determine why she continues to retain fluid and have extreme belly pain.

I just don't know what to think anymore. Watching her in pain for the last 10 days is just too much to take. She did actually have counts today....instead of being at zero, she is at 11. I am hoping this number will continue to go up and she will feel better......

I wanted to post a picture from Saturday with Savannah and my great friend, Kim. Kim and her family took Sean and Savannah to the Fiesta Bowl parade. Savannah had a great day....thank you Kim!!!

Once again there is alot going on with Taylor. It started last night around 10:00 when her RN went to give medication in one of her lumens. Taylor has a double lumen broviac which means her central line has 2 lines to give medication. When her RN went to give her medication in one of her lumens it had gone bad and could not be used. Taylor is receiving so many medications right now that they have to be able to access both lines. The IV team was called and they were able to repair the lumen without having to replace the entire Broviac....good news. It took a long time and we were not able to get to bed until around 2:00 am. Then we were back up again around 3:00 because she spiked another fever and she needed Tylenol. So...it was a long night.

Today was much of the same - fevers, belly pain, diarrhea and retaining of fluid. There is some good news. All of the test that they ran yesterday (Influenza, RSV, C-diff, parasites, fungal studies, etc) are all negative. Taylor's blood pressures have also stabilized which is awesome news. The doctors also feel that she is less likely to go septic at this point. This could all change very quickly but they feel that she is more stable at this point.

So...the question remains why is Taylor on Day 10 of fevers and severe belly pain? Why is she retaining fluid? The answer that I received today was most likely because she is SO severely compromised from all of the chemotherapy that her body is having a really hard time recovering. They do think that this is somewhat "normal" for AML and from the strong doses of chemotherapy that she has received over the last 6 1/2 months. All I can do is pray they are right because watching Taylor over the last 10 days be so sick has been absolutely excruciating.

I am trying to focus on today being a little better but as I watched Taylor receive another platelet transfusion, beg for pain medication, have severe diarrhea, and cry because she still feels so "yucky" it is hard to be positive. But...I try....

I am off to get some sleep. I have only had about 5 hours over the last couple of days...

I am so tired and stressed that I meant to save my last post so I could continue but accidentally hit send instead.....sorry.

This is a continuation from my earlier post.

Taylor also had to be swabbed for Influenza, RSV, and numerous other viruses today. This is her 6th swab and she is hysterical every time it is done. This time was no different. So far, her swab has come back clean, no viruses. Right now we are really just waiting and watching to see what happens. I am sure that tomorrow will bring more surprises.

Thank you for all of your emails, post, and texts with love and support. We really appreciate it.

I also wanted to take a moment and let you all know about an amazing gift my family has been given. My dear friend, Suzy Hochman has written a book about Taylor and Savannah and the bonds between twins during such a difficult time. She has gotten the book published and is giving all proceeds to Sean and I to help with medical bills during this difficult time. Please see the email below from Suzy about the book and how to purchase it if you would like a copy.

"Hearts Connected was created for a special family whose daughter was diagnosed with a rapid and aggressive form of Leukemia. Regardless of this fearful diagnosis, the book describes the bond between twin sisters and their unwavering love for one another...even if they are unable to be together. It is a story of hope, love, and unmeasurable courage; one that defines the power of sisterhood and God's divine intervention."

To purchase, please go to: http://createspace.com/3398838

Words can not express how much this book means to me. Suzy- you are amazing....thank you so much.

I will update more tomorrow...

So much going on, it is hard to know where to start. So...Taylor made it through the night and today without going to the ICU. Her blood pressures came up a little bit last night, they are not back to her normal (her baseline) but they are up enough to stay on this floor. She had a rough night with extreme belly pain, consistent fevers, tons of meds, and constant monitoring. Her oxygen saturation continues to be on the low end but also ok for now. Her lungs sound clear which is good news.

Taylor is most likely going into septic shock. Her fevers are not breaking, she continues to "third-space" (retain) fluid, her breathing (respirations) are very fast, and blood pressures are not stable. Septic shock is very serious and can be life-threatening. Right now the most important aspect to concentrate on is her blood pressure. It can not drop any lower. She needs a medication called Lasix (to help her pee off the excess fluid) but it can drop blood pressures so she can not be given Lasix right now. It is a balancing act.

Well today has been very scary to say the least. Taylor woke up feeling not well again. She spiked 2 fevers during the night and was up most of the night coughing. So...when she was seen today, they determined it was time for another room/floor change. Her nose has also started to run so she could potentially put the other oncology patients at risk so she was moved back up to the 3rd floor as a precaution. She actually had a good couple of hours today...no fevers, sitting up watching TV an actually asked for food. She only at a few bites but at least it was something. She still continued to have belly pain and was medicated with morphine throughout the day. She also had to have her dressing changed which was no fun but being the trooper that she is, she powered through it.

Her weight was a little concerning today because she has actually been gaining weight over the past 2 days which is not possible because she is not eating and her IV nutrition is only being run at 50% of her caloric needs. She is retaining fluid or "third-spacing". This is most likely from her protein levels in her blood being low and not holding onto the fluid. The fluid is leaking out into her gut causing abdominal distention and that could be the reason for her pain.

Tonight she spiked a fever again and was given morphine. One concern is that Taylor is becoming septic from the 8 days of unresolved fevers. Her blood pressure then dropped critically low and she was having trouble getting a deep enough breath. She was given a "bolus" of fluid to help bring her pressures up. Her pressures are now stable but still on the low side. Her oxygen saturation levels are low but considered stable for the time being. She is retaining so much fluid that she is very puffy and even has edema in her legs and feet. Right now we are still on the 3rd floor but if pressures drop again will be moved to ICU. She will need blood pressure medications that are not given on this floor. She is holding her own right now but not out of the woods for the night.

As you can imagine, this has been extremely scary. I am staring at her monitors and trying not to jump every time they beep because her oxygen saturation drops or her pulse drops. It is going to be a very long night

I have asked for your prayers in the past but Taylor needs the more than ever. Please pray that we stay out of the ICU and that this nightmare will be over soon. I just don't know how much more she can take.....

Happy New Year. I wish I had better news to post....but not much has changed. Taylor continues to be at zero, continues to feel really bad, continues to have fevers (spiked again late last night and today), continues to beg for pain medicine, and continues to break my heart!! She is just so sad in her bed....asking me to please rub her belly......ENOUGH pain for this child!!!! I slept with her last again last night and all day today....every time I try to get up she crys and says, "please Mommy don't leave me, I don't feel good".

I had a glimmer of hope tonight around 4:00 when she actually smiled at me and wanted to sit on the couch. We got her up and she watched a movie on the couch. She tried to eat a little dinner but just couldn't do it. She wanted to go back to bed and had to be given another dose of morphine.

Savannah enjoyed a couple of nights at Grandma's. She is really having a hard time. She told Grandma she was having a really bad day because she misses Mommy and Taylor so much. She is going to the Fiesta Bowl parade tomorrow with Sean and friends so hopefully that will make her happy. I am trying to go home for a couple of hours on Sunday to be with Savannah. I would love to sleep at home (I have only slept at home one night since December 7th) but Taylor was really upset with that idea. So.....I will try to plan something special for Savannah and I to do for the day.

Taylor will most likely have to have another platelet transfusion tomorrow....more fun.

We wish you all a very happy, HEALTHY, joyous 2010. Happy New Year