A quick update as the last 5 hours have been crazy.

Taylor continued with vomiting and diarrhea throughout the night. She needed pain meds constantly and then around 4:00 today she started having uncontrolled pain. She was rushed down for an xray. The xray showed significant distention and fluid in her loops of bowel. The amount of fluid and distention was concerning enough that she was then sent for a STAT CT which would should greater detail. They were concerned that she might have a perforation of the bowel. Well...I just got off the phone with the oncologist and her CT showed NO perforation or anything other than TONS of fluid in her belly and bowel. This is causing tons of pain and diarrhea. She has been allowed to eat bites of toast, applesauce, crackers, and soup but because her colitis is so bad, she is now not allowed to eat or drink anything. Her belly has to "rest" until this gets cleared up.

She is absolutely exhausted at this point. She also received platelets today. I am also exhausted. She will not let the RN's do any of her blood pressures or temperatures at night. She will only let me do it. Last night we were up at 12:00, 2:00, 4:00, 5:00 and 7:00. I am so tired I can't see straight.

Off to bed....

Well...I might have a little good news. Taylor is very close to going 24 hours with out a fever. We just checked it and it on the border of being a fever so we are waiting an hour and will re-check. If she makes it 24 hours, this will be the first time 15 days that she did not have a fever. She continues to have belly pain, diarrhea , needs pain meds, and is very tired.

I was able to leave for 6 hours today and spend time with Savannah. It was great to be home and spend time with her. Being home also brought 5 loads of laundry, changing sheets, catching up on paper work and re-packing for the week but Savannah and I made cupcakes and watched a movie together. Sean came down with Taylor. She slept most of the day but ended up feeling a little better this afternoon and played in bed for a couple of hours. She is so tired...it is actually scary how tired she is. But hopefully the sleep will help her to recover and feel better.

Other than that...not much has changed. She still isn't herself but definitely felt a little better today.

Have a good night...

I feel like a broken record. Last night brought more of the same. The positive aspect is that even though she is still having fevers, they are becoming less frequent. Obviously the goal is to be afebrile but at this point I will take less frequent. She is still having vomiting and diarrhea and has horrible stomach pain. Her counts did come up again today so hopefully some of her own infection fighting ability coupled with the 5 antibiotics/antifungal medications she is on will start making a difference. Normally the magic number to be released is an ANC of 250 but that will not be in effect for Taylor this round. She will have to go without fevers for a couple of days and then they will gradually remove 1 antibiotic at a time. She will also have to have days of no diarrhea and vomiting and be able to tolerate food. So....we are at Day 33 today and think we have quite awhile left.

Now....for the update on the CT. I talked to Taylor's primary oncologist about the 2 nodules that were evidenced on the CT earlier this week. Because of the size of the nodules (small), there is no way at this time to tell what they are. There is a good chance they could be fungal balls which are very dangerous. They do not think at this time that the cancer has metastasised but there is also no way to be sure. So, the plan is to wait and re-do the CT in a couple of weeks to see if the nodules are big enough to determine what they are. If for some reason Taylor would get worse in over the coming days, they would immediately repeat the CT to see if they have grown. This is all extremely scary. A fungal infection is not what we need right now. Please pray that the nodules are something that Taylor responds to treatment.

Taylor had a dressing change today and had a really rough time with it. She is at her breaking point with all that she can take. It is just too much to go through. She is also getting packed RBC right now so at least she is sleeping. Sleep seems to be her only time of peace right now.

I am off to try to catch up on some calls and email. Have a good night.

Today started with much of the same....she spike another fever last night, threw up and required morphine numerous times. She woke up with no energy at all and her ANC dropped by 10. Mid- morning she did actually get up to the bathroom and wanted to get dressed. She made it back to the couch and spent the majority of the day on the couch sleeping and watching TV. She needed another platelet transfusion today. Her fever continues to burn through the platelets. She actually needed packed RBC's today also but they decided to hold off until tomorrow.

I wasn't going to post any information on the CT scan results until I received more clarification but I have received so many questions that I will go ahead and post what I know. The CT of her belly shows that she has colitis and fluid in her colon. This is what is causing the severe diarrhea and vomiting. This is most likely why her belly is so distended....from the gas. The colitis is most likely from the numerous days on antibiotics and the side effects of some of her chemotherapy drugs. They are "resting" her belly right now. She is only allowed sips of water, crackers and toast. She is also taking Flagyl which should help with the diarrhea. The Flagyl is taken by mouth 4 times a day....so much fun with the way Taylor loves to take medications!!!

She also received a CT of her lungs because she has had a continuous cough. This is the part that is still very unclear. Her results showed 2 nodules in each upper lung. She had a prior CT on December 31 and there were no nodules that were seen. So...what does this mean???? We are not sure yet. Her primary oncologist is coming over to talk to me tomorrow and more tests have been ordered. Obviously having nodules in the lungs is not what we were hoping for. It could be numerous things, from simple to more severe. It could be inflammation, bacterial infection, fungal infection, or other things that I don't even want to think about!! So...until I know more, I would rather not focus on this. Hopefully tomorrow's talk with her Doctor will bring more knowledge and positive results.

Taylor actually ended the day on a more positive note. She agreed to a bath and ate a few bites of crackers. We had to move rooms and she actually helped me pack up a few things and walked to her new room. This is a huge step......she is already sound asleep in bed....she is very weak and doesn't have much energy. She also needed another dose of pain medication a few minutes ago but at least she did something tonight.

As always, please pray for Taylor but I also ask that you pray especially hard for our dear friend, Kate McRae. She had a test today and the results were not exactly what the family was looking for....Kate, Holly, and Aaron- we love you guys and know you will get through this bump in the road!!!

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...