Well, Taylor and I went to the clinic today for her 1st post-treatment visit. When we left the hospital, Taylor's ANC (infection fighting ability) was very high. Today at the clinic, her ANC came back much lower. This is very disappointing for a couple of reasons. She is at more risk for infections and it means that her body is still extremely immunocompromised and still recovering. This means that her final bone marrow aspiration (which will tell us if the past 7 months have put her into remission) will have to be put off even longer. We were hoping that her bone marrow aspiration would be done next week but this will have to wait for much longer. So....we continue to wait and not know where we are at with her treatment. The good news is that she did not need to have any transfusion today. We go back to the clinic on February 5th to have her levels checked again. At this time, they will again decide when they will be able to do the bone marrow aspiration. More waiting....

We are still trying to adjust to being home. It is still quite an adjustment. Today when Taylor and I left for the clinic Savannah got really upset and was begging me not to go. She thought I was going back to the hospital again with Taylor and was leaving her again. She made me promise that I would pick her up from school today. She was so upset....it broke my heart. She feels very left out and deserted. So sad....

Taylor seems to be feeling good, just very tired.

I will post again later this week or weekend.

Thank you all for your continued prayers and support....the waiting and not knowing is so difficult.

Well....we are truly trying to adjust to being back home. You would think it was be the best time ever but it definitely has it challenges. Yes, being home is great but Taylor and Savannah are having a hard time adjusting to being back together. Because they have been apart for the majority of 7 months...they are not used to sharing toys or mommy. Taylor continues to want all of my attention and is very jealous of any one-on-one time I spend with Savannah. I took Savannah to her "talking doctor" this week and Taylor cried most of the morning begging me not to go. The only way that Savannah and I were able to go was that Taylor was sleeping when we left. Taylor is finally sleeping in her own room without waking up so that is great news. All of this will get worked out, it will just take some time.

We had an eventful weekend. We had belated Christmas at our house. Friday was Christmas Eve and Saturday was Christmas Day. Santa and his Elf visited us on Friday night (see picture).....it was a great time. So amazing to see the girls opening presents together and celebrating.

Taylor is feeling ok...very tired. She tries hard to keep up with Savannah but does not have the stamina to do it. She still complains of a stomach ache and threw up once. She has napped most days. Taylor goes back to the clinic on Tuesday to determine her blood counts. She might need a transfusion which would be done in the clinic. I am also hoping to get her bone marrow aspiration scheduled. It is so hard not knowing where we are at with her leukemia. Please continue to pray for remission. We are still not out of the woods yet. Even if Taylor is in remission, she has a very high chance of relapse over the next 2 years....please pray for strength over the next 2 years. There are so many unanswered questions.....

I wanted to thank JT Wamsley and Chris for helping us with Christmas Eve...you made 2 little girls very happy....thank you!!!

Thank you also to Rhonda Rush and all of you who helped with meals over the last 7 months. Rhonda set up the meals for us....thank you so much!!! Having a home cooked meal for Sean and Savannah while Taylor and I were in the hospital was such a treat...thanks to all of you who helped out.

I will update more on Tuesday when we get home from the clinic.....

The picture is of Taylor and Savannah last night on their first night home together.

Yesterday came with a mix of emotions...it was so exciting to go home. The RN's sent Taylor off with an amazing send off. The all came into her room and sang a "No More Chemo" song. It was very emotional. Leaving the hospital is hard for me....being there brings so much security. Anytime something at all happens with Taylor, we push the "call button" and the RN comes in and evaluates her. Now...being at home...I worry about the smallest things....the security of the hospital is gone. Also, leaving the hospital and not knowing if Taylor is in remission is so hard. She won't have her bone marrow aspiration for a couple of weeks. Her body is still recovering so they want to give her a little more time. Two weeks seems like years....not knowing if all the chemo "cured" her is excruciating. All we can do is pray....

She goes back to the clinic on Tuesday to make sure she doesn't need a transfusion. In the beginning, we will spend a good amount of time at the clinic. Until then, we are trying to get back into a groove at home. Taylor had a really bad night last night. She was awake the majority of the night. She hasn't slept with out mommy for so long it was really hard for her. I ended up taking her into the extra bedroom with me around midnight and we got a couple of hours of sleep....I am hoping each night brings more "normalcy".

I will post more later in the week or early next week. For now, I have so much to do. Unpacking from 7 months away is SOOOO much fun!!!!

Thank you all for your prayers.....please continue to pray for strength, guidance, and remission!!

After 44 days, Taylor is finally home. There is much to post but after a happy, long day I am too tired. Here are a few pictures from today. One is with Amanda who was one of Taylor's primary nurses during the last 2 rounds. The other is of Taylor, Sean and I as we are on our way out (sorry about the black line across the picture!).

I will post more tomorrow with test results and the plan for the next few weeks.

So good to be home!!!

A quick update as I am trying to get Taylor to sleep. She woke up at 3:00am today and we have not gone back to sleep.

She had her ECHO cardiogram and lung CT. I haven't seen the doctor again since so don't have official results.

It is not looking like we will actually go tomorrow. She is still not eating as much as they would like and continues to have diarrhea. So..we will most likely be monitored again for another day or so. Who know though....things change quickly around here.

We are both past our points of wanting to go home.....it is just too long to be locked in one room. We have both had it!!!

I just found out that another good friend of mine, Laurie Thivierge, ran the half marathon yesterday.....thank you Laurie.

Hello all - good news to post....Taylor continues to feel better each day. She is now off of all of her IV antibiotics. Her TPN is now running for only 12 hours/day so she is trying to eat a little throughout the day. She continues to have a very small amount of diarrhea. Her stomach pains are much better and hasn't had morphine in a couple of days.

She has been up every day and loves playing with all of her nurses. They are so amazing about making time to play with Taylor every day.

She had a post-chemotherapy EKG today to determine if there was any damage to her heart. Tomorrow she will have an ECHO to determine the same. She is also having another lung CT tomorrow to see if the lung nodules have gotten any better. If all goes well and the lung CT looks ok....we are praying to go home on Tuesday.....we are both so anxious to go home and be with Savannah.

Another special thank you to Aunt Kerri, Shawn, Gus, Marty and Taylor......we truly appreciate you running the marathon. All of the money raised for the Leukemia Society will hopefully help find a cure for this awful disease!!!

Like yesterday, there is not much new to post. We are simply waiting on Taylor's belly to feel better and her eating to increase. She did try a few bites today but the diarrhea hit her hard. The plan right now is to keep Taylor on 12 hours of nutrition and for her to eat when she feels like it. She will stay through the weekend. She will most likely go down for another CT on Monday to check the size of the nodules in her lungs. Hopefully they have either gotten smaller or gone away. If they increase in size, I am not sure what the plan is. If Taylor's belly improves and she is able to tolerate food, she might be able to go home on Tuesday.......big maybe. I haven't told her this because I don't want her to be disappointed if it doesn't happen. So...for now we wait!!

I wanted to thank all of our friends and family who are running the marathon this weekend. Aunt Kerri, Shawn, Marty, Taylor, Gustavo.....I hope I am not forgetting anyone. Thank you for doing this for Taylor....we truly appreciate it. Safe running!!! I had hoped that Taylor would be home and we could be down there cheering you on but it is not going to happen. We are cheering you on in spirit. Thank you again for doing this.....

Unless Taylor has any major changes, I will post again Sunday.... Have a great weekend.

Not much new to report today. Taylor feels much better. She continues with the stomach pain but has only need pain medication 1 time today...a huge improvement!! She also ate a little food today. So...we are heading in the right direction. Currently she is getting 24 hour TPN but they are going to try her on 18 hour TPN tomorrow in the hopes that she will want to eat a little more. Right now going home depends on her eating. They cannot send her home until she can eat and tolerate food. So...we are trying.

I know that many of you have purchased Hearts Connected...the book my friend Suzy wrote. First, thank you to all that have purchased the book. Second.....Suzy, words can not describe how amazing the book it. (We had a delay in the shipping so I just received the book tonight). Taylor and I "skyped" with Sean and Savannah and read the book for the first time....absolutely wonderful. The girls both loved it. Taylor and I ended up reading it numerous times tonight....It truly is an amazing gift you have given our family...thank you Suzy!!!

I am off to try to have a little down time tonight....Taylor is having a hard time falling asleep so I am off to lay with her.

A very quick post as I am so tired I am having a hard time staying awake. A minor complication caused me to stay up the entire night last night. Taylor's temperature actually dropped well below normal which can also be a sign of infection or sepsis. So, her temperature was checked almost hourly along with her blood pressure. Her temperature has normalized today but they have done blood cultures again to rule out any new infection.

Spoke with the doctors on her lung CT. Because one of the nodules got smaller and the other stayed the same, they have decided to watch the nodules for now and see what happens. She is already on anti-fungal medication so she is hopefully covered if they are fungal infections. Good news that no new tests are needed right now, bad news that the nodules are still there and we are not positive what they are.

Taylor continues to be on 24 hour TPN. She is allowed to eat foods now but only takes bites....she isn't really interested in eating and still requires morphine for the stomach pain. She also had to receive another platelet transfusion today. She continues to burn through platelets at a very fast rate.

The plan for discharge is hopefully sometime in the near future...early next week IF.....Taylor starts eating and has no more diarrhea, and has no more fevers, and has no infection that grow back in her cultures. Alot of things have to fall into place before she can go home. Her counts are well above where she needs to be for discharge. Her bone marrow aspiration will most likely happen toward the end of January.

That is all for me.....way to drained and tired!!

Day 37 but who is counting!!!! Taylor had a really hard time going to sleep last night and was up until around 10:30 so she woke up tired today. She started to the day asking for morphine but then really perked up. She got dressed and did a few crafts. The doctors rounded and decided that because she continued to be afebrile that they would start by taking off 1 of her antibiotics.....yeah!!! She also wasn't having much diarrhea so they decided she could try to eat crackers, bread, soup, etc to see how her stomach handled it. She tried a few saltines and seemed to do ok. They also stopped her stomach medicine, Flagyl, because her second stool sample was negative for C-diff. She/I were thrilled about the Flagyl being discontinued because it is given by mouth 4 times/day. Taylor had been having a really hard time keeping the medicine down...she normally threw up at least 2 of the doses....having this stopped was GREAT news.

She was sent down for a Lung CT today. The unofficial results show that of the 2 nodules, one decreased in size by a small amount, and one stayed the same. So....not exactly the news I was hoping for. I obviously was hoping that the nodules were gone. The next step is to most likely consult with a pulmonologist to see what they would like to do. We still don't know if they are bacterial or fungus or even something else. Hopefully we will have this consult in the AM...still very scary.

Taylor tried to eat a little chicken broth tonight and only was able to take a few bites before the diarrhea and nausea started.

I was awake most of the night worrying about what the next step of this process will bring. Now that Taylor is feeling better and she seems to be out of the woods as far as going septic, I am now very concerned about her final bone marrow aspiration. This will most likely happen the end of January. All I can do is pray that Taylor has endured 7 months of brutal treatment for a positive result.....it is just so scary to even think that she went through all of this and the leukemia might not be gone......she still has such a long road ahead of her.

What a change 24 hours can make. After the drama of the Xray and CT last night, Taylor finally got to sleep around 10:30. She slept as well as you can at the hospital and only needed pain meds once during the night. The great news is that she has now gone 24 hours without a fever!!! After 15 straight days of fever, I think they have finally gone away!! I am so excited and she definitely feels better. She continues to have diarrhea and stomach pain. She hasn't needed as much morphine today but still has had some. They have decided that her belly needs "rest" and she is not allowed to eat or drink anything. Her TPN (nutrition) has been changed from 12 hours to 24 hours until we get her belly pain and diarrhea under control.

Her cough continues and at times is worse so she will probably go down for another CT scan tomorrow to see if they can tell what is going on with her lungs. With this brings tons of anxiety.....please pray for her.

She actually got out of bed today and did a couple of crafts and sat on the couch. This is also the first day in about 17 days that she has been awake the entire day. She did not nap once...she actually has some energy. I can't express how much better I feel today...I truly have hope that my "old" Taylor is coming back. So..I pray for an uneventful night....we both need some rest before the CT tomorrow.

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...

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