I wish that I could could post with better news but Taylor is still not feeling well. She had another rough night...she spiked a fever again. Like before, her fever breaks with the Tylenol but starts right back up once the Tylenol starts wearing off. So much happened today, I don't know where to start...

Taylor had a CT scan to try to determine why she was still having fevers. The scan came back clean. They did see some fluid in her belly which was concerning. Some of her labs came back abnormal today....one of them being her albumin level. Albumin is a plasma found in the blood that helps control leaking of fluid out of the blood. Her albumin level was low so this is most likely the reason why she has fluid in her belly. The chemo has probably caused "damage" to her liver which in turn effects the albumin levels. So, she was given an albumin transfusion today. During the transfusion, she was coughing alot and her face started looking a little puffy (which is normal??) from this sort of transfusion. She was then immediately given Lasix (which is a diuretic) to help her get rid of some of this excess fluid. She/I will probably be up all night peeing....yeah!!!

She also had to have a RBC transfusion and platelet transfusion today. On top of that she was given her triple antibiotics all day, morphine, and Tylenol. What a busy day!!! Tonight she will receive more antibiotics and her TPN (nutrition). Her potassium levels are a little off also so the TPN is critical to help get these levels stabilized.

It is so unbelievably hard to watch Taylor right now. I haven't seen a smile in days. She got really mad at me tonight because I made her get up to take a bath....I actually somewhat enjoyed her tantrum because at least she wasn't just laying in bed staring at the walls!!!

I still hope that we wake up tomorrow to 2010 and have no fevers or pain. I would also be thrilled if her ANC was not at zero but I doubt it that will happen. She has no evidence at all of starting to trend up.

Enough for tonight....we have a long night of peeing ahead of us!!

Have a safe and Happy 2010.

P.S.....I am so not a doctor so if the information above regarding the albumin is not exactly right...I apologize...it is all so confusing and even more confusing on only a couple of hours sleep!!!

Happy New Year.

I truly don't even know what day in this round we are....it seems like day 102 but I think it is 24. I also think it is Day 10 or 11 at zero. I wish I could say that today was better but unfortunately it was not. She continued to spike a fever all day yesterday and throughout the night. She takes the Tylenol, the fever breaks and then spikes right back up. She slept fairly well last night....Sophia was her nurse so that made her night much better. After we had to wake her around 10:00 pm to take Tylenol, she wanted to stay awake for a little bit to give Sophia a hug!!! Even thought she got another round of platelets yesterday, she still didn't get much of a bump because her fevers are eating all of the platelets. So....I am thinking she will get another transfusion tomorrow.

I left for 4 hours today to see Savannah, do laundry, and take a real shower. It was so good to see Savannah....she is so beautiful and such a good girl. Taylor was hysterical when I left but quickly fell back asleep. Sean stayed with her for a little bit until Papa came and then Papa stayed with her. Reality once again hit when I was home with Savannah. Savannah and I were enjoying time together watching TV when I realized it was almost time for me to get back to PCH. I told her I would be in my room getting ready and Daddy would be home soon. Sean walked into the bathroom carrying Savannah who was crying. When I asked Savannah what was wrong, she sobbed "Daddy's home, that means you are leaving again.!!!" It just never gets any easier.

Taylor slept most of the afternoon for Papa. Because Taylor's stomach "hurts" her so much, they ordered a Xray today to make sure everything looked ok. Luckily, the Xray was clean. They are pretty sure her stomach pain is due to sores in her throat and stomach. She had 3 doses of morphine today....seems like a lot. Tonight even after a dose of morphine she was still crying from the pain.....will see what the doctor thinks tomorrow. We might be heading toward a pain pump. Her blood cultures have grown back positive again so she will continue on the antibiotics.

All in all...another crappy day. Just watching Taylor be so miserable is absolutely excruciating....

Any thoughts that we would wake up today and the day would be better have quickly been squashed. I guess I should not even say wake up because I don't really think Taylor or I slept last night. Her platelet transfusion didn't even start until 10:00 and luckily she didn't react to the transfusion. It is just difficult to do it so late because she is not able to sleep. Their are vital signs every 15 minutes, a pulse ox beeping and then she spiked a fever again during the transfusion so we had to fight with her again to take Tylenol. After that was all done, she just couldn't sleep. She is in pain and can't get comfortable. She also has 3 antibiotics running all the time so her pumps seems to beep alot!! So....there was no sleep.

She continues to be at zero, continues to have high fevers, and continues to refuse to eat. We also found out that she will need ANOTHER platelet transfusion today. Her platelets did not bump up high enough from last night. This is most likely because her fever is burning up all the platelets. So....today brings another round of fun. Oh....did I mention, we also had to move rooms again this morning!!! Today, she will start TPN nutrition, have a transfusion and hopefully sleep. I still haven't gotten any of her meds in her today. Even when I mention taking meds or doing mouth care she screams and cry's. Today she asked me, "Mommy, why do you make me do all this yucky stuff?" When does it end?????

I am off to lay down with her and try to get a nap in....we are both exhausted.

I wish I could say the day got better but it did not. Taylor continued to have a fever the entire night and still today. She woke up even more lethargic today than before. She refused to even get up to go to the bathroom...she is back in pull ups most of the day. Her fever broke late this afternoon but is slowly coming back up again tonight. She refuses to eat anything. She also has numerous sores on her tongue. She was screaming today that her stomach hurt so she was given zofran but this did not work at all. After much talking with Taylor they think she has sores in her stomach (common from the high doses of chemo), so.....she was put on pain medication today. She slept from the morphine and woke up and seemed to feel a little better. She even wanted to get up and lay on the couch.....but this only lasted for about 1/2 and she was back in bed. She also has a very "dry" cough which could be sign that she has mucositis in her throat. This just means there is a build up of mucous in her throat most likely from sores. So.....the pain medication may become more routine to get her through this tough time. She will most likely start TPN (nutrition) through her line tomorrow because she hasn't eaten for 2 days. Her platelets are dangerously low today so she was supposed to be transfused at 10:00 this morning but we are still waiting on the platelets. The blood banks are all depleted from the holiday so we are still searching. The transfusion will most likely happen in the middle of the night which will be really fun.....we will be up for the majority of the night...!!!!

On top of everything else, we had to move rooms today. We are now rooming with her friend Kate which is good but they both feel so bad that they can't enjoy being roommates yet.

All in all....2 of the worst days we have had. The good news is that Savannah is feeling better but with Taylor being so sick, I can not leave. So....still haven't even gotten to give Savannah a Christmas hug!!!

• Well....the fun has really started!!! Taylor spiked a fever in the middle of the night. Blood cultures were drawn and 3 antibiotics (triples) were started. She woke up feeling terrible. She is absolutely miserable. She lays in bed and moans. She doesn't even want to get up and go to the bathroom. She asked me to put her back in diapers today....she says she hurts too much to get up. After fighting with her this morning, I finally got a dose of Tylenol in her (she hates Tylenol!). She seemed to feel a little better after the Tylenol and wanted to lay on the couch instead of in bed. This only lasted for a short time before she wanted to go back to bed. Her fever started creeping up again and she is hovering around 103. Because of the fever her heart rate is very high....around 184 all day...not good!! She also has gotten mouth sores on her tongue. She has about 5 of them and her tongue is red and swollen. She won't eat because of it and when I forced her to do her mouth care, you could hear hear screaming down the hall. It burns her tongue but it is the only thing that will help heal them. She also has a paper cut on her finger that is red and swollen. Luckily the antibiotics should help heal this also.

For the past 4 rounds whenever she has gotten a fever, no bacteria have ever grown from her cultures. She has always gotten over the fever in a day or so but I just found out that this time, a gram negative bacteria has grown back already. This means she has bacteria in her blood and central lines. Luckily, the antibiotics that she is already on should cover the bacteria. We will know more in the am. For now, she needs to sleep, sleep, sleep. We will most likely give her a dose of morphine tonight for her tongue.

On top of everything with Taylor, Savannah threw up again last night. She continues to cough so I still can not go home and see her. My dad and Sean can also not come down to visit Taylor because of Savannah being sick. This just S-----!!!

Because Taylor's fever's are not controlled and she is positive for bacteria, we will ask that we have no visitors until she gets a little better. With her counts still at zero, it is too risky. Thank you for your understanding.

Last night we only slept for a couple of hours and I have a feeling tonight is going to be just as bad so I am off to crawl into bed with Taylor and try to sleep.

Thanks,
Kristen

Another day of being at zero and not feeling well. We finally got Taylor's vomiting under control last night and she slept ok. She was pretty restless and moaned alot but slept for most of the night. She woke up feeling ok but VERY tired. Her hemoglobin (RBC's) are very low today so she is getting a transfusion right now. She was pre-medicated and so far has not had a reaction. She wanted badly to play today but didn't really have the energy. She watched a lot of TV and rested most of the day. She did have to have her dressing changed. It seemed to be more painful today than usual. Her skin underneath the dressing is so tender and thin from all the dressing changes. You could literally hear her screaming down the halls as they changed her dressing. Not much else is going on....just not feeling well.

We wanted to wish Kate McRae a very Happy Birthday today. She is not feeling well so didn't get to enjoy much of her birthday....we hope she feels better tomorrow.

I am hoping to go see Savannah tomorrow but still not sure if I should. She still has a cough and Taylor has no ability to fight infection so....we will see how Savannah feels tomorrow. I haven't seen her since last Saturday.....too long!!

I forgot to thank everyone for all of the Christmas presents that we have received for the girls. We have not opened any of them yet because we are waiting until Taylor is home and we will be having Christmas together. But....thank you so much for your generosity.

What a difference a couple of hours can make. My happy, energetic Taylor is now very sick....throwing up every couple of minutes. It all came on very suddenly. The rash on her legs got very red and had moved to her elbows. They wanted to give her Benadryl because the rash was really bothering Taylor. She fell asleep from the Benadryl quickly and then became very agitated and uncomfortable. She woke up crying that her stomach hurt and then started throwing up. I mean...throwing up!! It was pouring out of her. She was so sick. They immediately gave her a nausea medication and she fell back asleep. Within minutes she was throwing up again so another medication was hung. All medications have the side effect of drowsiness so through it all Taylor could hardly stay awake. So...after three medications she is passed out but still very uncomfortable. She is moaning in her sleep and can't seem to get comfortable. She hasn't spiked a fever yet but I have a bad feeling about tonight. I think we are in for a long, long night!!! Luckily her favorite RN Sophia is on tonight so she will be in great hands. I feel so bad because all day long Taylor couldn't wait to see Sophia......that's all she could talk about...when would Sophia get here....she just couldn't stay awake to see her.

Anyway....not a good ending to an already hard day! Hoping she and Savannah both feel better tomorrow.

Merry Christmas. We hope that you all had a joyous, safe holiday.

Taylor and I enjoyed a visit from Santa and Mrs. Claus today. She is thrilled to have Miss Katie as her RN today. Katie spoiled Taylor with a Princess Santa hat (in picture) and did her nails today.....Taylor loves Miss Katie. Taylor also received an American Girl Doll from Kate's Crazy Christmas Toy Drive. She LOVES it......thank you so much.

Savannah enjoyed the day with Daddy, Papa, and Grandma. She is feeling a little better but still not 100%. Because she is still coughing a little I doubt if I will be able to go home yet tomorrow. It is still to risky for Taylor to be exposed to any germs I could bring back from Savannah. So.....I am missing Savannah like crazy and still can't believe I didn't spend even a second with her on Christmas Day.

Taylor woke up feeling really well and was having a great day. Within the last hour, she has developed a rash all over her legs that "hurts" her. It is not itchy, but she rubs it and seems uncomfortable. Her cheeks are also getting really red......I have a feeling she might spike a fever tonight. She is also really tired all of a sudden. We will see......

It has been a really hard day. All I can say is that Leukemia stinks!!!

Merry Christmas.

Well.....just when I get over the disappointment of Savannah not being able to visit Taylor on Christmas and formulate Plan B......everything changes again. Plan B was to spend the day with Taylor at PCH and then switch and take Savannah out to dinner and watch her open a couple of presents. Savannah started coughing on Tuesday during the night and stayed home sick from school on Wednesday. Her cough continued through the day on Wednesday so I had Sean take her in to make sure it wasn't something more than a cold. Luckily, they thought she just had a cold but she started throwing up at dinner last night. She got up numerous times through out the night and was pretty sick. Sean took her back to the doctor today and she was tested for Influenza A. LUCKILY, she tested negative for Influenza A but has more than a cold. It is most likely a stomach virus and will hopefully pass within 24 hours. The problem is......I can't be around her and then come back and see Taylor. Taylor is still at zero (and will be for quite some time) so she would not be able to fight off any sort of bug that I could bring to her. So......I will not be able to spend any time with Savannah on Christmas. I had a major break down today.....thank goodness for the RN's and my friend Holly.....the thought of not seeing Savannah on Christmas was more than I could take. If Savannah goes all day Friday without vomiting or a fever, I might be able to see her on Saturday. Last night while Savannah was getting sick, she was crying saying that she just "wanted Mommy". Breaks my heart!!!! Anyway..... it will be a tough day tomorrow. Savannah will spend the day with Papa, Daddy, and Grandma. Santa will be by PCH for a visit and Taylor is very excited. We will just have to make the best of it.....

Taylor is feeling really good. She is eating well, playing, and doing great. I continue to wait for the fevers to start......maybe we will get lucky this round and avoid them.

Today at PCH, I got to experience ToyLand. It was amazing and bittersweet at the same time. They allowed all parents of anyone who is inpatient to go "shopping". PCH received tons of donations and through the hard work of the staff here and many volunteers, allowed parents to get many presents for their children. It was just so surreal to think that I was "shopping" for Taylor and Savannah at PCH Toyland. After the shopping, we went into another room and volunteers wrapped our presents for us. The generosity of people is amazing!!! It is just still so hard to believe how this Christmas will be spent for my family. The toys and gifts are amazing but I would trade it all to be home with the girls together....

The true reality of having a child with leukemia hit hard again this week. Another patient who had ALL turned 4 on Tuesday, December 22. Unfortunately, she also passed away on her 4th birthday. I had only met her mother on brief occasions on the floor but can't stop thinking about her and her family. My heart breaks for them. Please pray for them....pray for strength to get through this extremely difficult time.

My heart also break this holiday for my friends the Merricks. Donn, Audra, and Delaney - please know how much we are thinking of you and praying for all of you. We think about Dawson all the time......you are all in my thoughts....we love you!

That is it for tonight.....I am emotionally spent and not really looking forward to tomorrow. I do wish all of you a very Merry Christmas. Thank you all for your love, support, and prayers. You all mean so much to us.

Merry Christmas,
Kristen

Merry Christmas Eve......

The second picture is of Taylor and Miss Marcy....thanks for watching Taylor yesterday Miss Marcy!!

Quick post as I am catching up on some work. Taylor had a great day today. She enjoyed visits from many RN's and got a ton of new toys from Kate's Crazy Christmas Toy Drive. She got a new dress up (see attached picture)!!. The toy drive was amazing. The generosity of all that donated is so appreciated. Also, a huge thank you to Holly McRae and her family for all of their hard work on the toy drive. They worked many long, hard hours organizing the toys. The toy drive made a ton of children at PCH very happy.....thank you again to the McRae family!!!

Taylor is feeling good...still at zero but had one of her better days today.

Will post tomorrow when I have more time.....

So sorry....this is a continuation of my post...my computer died mid-post and it published the post for some reason......So....I was saying that they added a dose of steroids to Taylor's pre-medication. This might have been the key to her not reacting. No matter what it was.....I am just excited that she didn't have a reaction.

She really enjoyed seeing all of her "old" RN's from the 2nd floor today....she likes being back down here but does miss everyone upstairs!!! She is really getting excited for Christmas but is very sad that she won't be with Savannah. I had been working with the staff to see if Savannah would be able to come up for a quick visit on Christmas but we heard back today that my request was nott granted. So......the girls will be separated on Christmas.....it breaks my heart!!! I have decided that I will stay with Taylor on both Christmas Eve and Christmas Day but will try to see Savannah for at couple of hours on Christmas Day. I am hoping to take her to dinner and Sean can come see Taylor for a couple of hours. No matter what....Christmas is just not going to be the same this year!!!

I am off to work again tomorrow.....

Day 15 of Round 5 and Day 3 of being at zero. Taylor's infection fighting ability is non-existent at this point so the chance of fever and infection is extremely high. She has a toe nail that ripped quite low and we are worried that it will get infected and she won't be able to fight off the infection.....who would have ever thought a ripped toe nail would be a concern??? She had a good day and seemed to feel pretty good. I worked so Sean was with her today. She did have to get a platelet transfusion today but HAD NO REACTION!!!! What an early Christmas present for me.....she has reacted to the last 3 rounds of platelets so I was extremely nervous. They decided to add a dose of steroids to her

I am back at PCH after a quick 24 hours at home. I had a good day with Savannah and my mom. We went to visit Santa, went out to lunch, and to see Princess and The Frog.....very cute movie. Savannah loved her special day and was exhausted by 6:30.

Taylor had a good day yesterday and today. Her counts are at zero and will stay at zero for quite some time. She gets tired really easy but tries to get up and play a little bit each day. She was finally cleared for Influenza so was moved back down to the oncology floor today. She was excited to see all of the familiar faces on 2 but also sad to leave the 3rd floor. She/we had made some really good friends with staff on 3.....they were great to Taylor. Thank you all for your love and support.....stop down and visit when you get a chance!!!

I am off to get Taylor's last medicine of the day done....she is very tired and wants to go to bed.

More later.....

A quick post tonight as not much has changed and I finally have her to sleep at a decent time. She actually tried to go to sleep very early last night but it didn't work....she was restless and had a bad stomach ache. She tossed and turned until about 2:00am and then fell into a decent sleep. Her counts are almost at zero....they are 32 today. So, her infection fighting ability is non-existent. She felt ok for most of the day, just tired.

She enjoyed time with Daddy this morning while I went to the holiday party at Savannah's school. She also enjoyed a visit from my good friend Zelda. Other than that, she watched a lot of TV and we played many games of Candyland.

I am off tomorrow to take Savannah to see Santa and do tons of laundry!!! I will be back to PCH early on Sunday......will post more then.

Have a great weekend.

Taylor's counts are almost at zero. She is at 75 today. She has gone down much more quickly this round and will most likely stay at zero longer this round. It is expected that once her counts do start to rise, they will rise very slowly. Her body is so compromised after so many rounds of chemo that it is hard to recover. I had hoped that we would be home by January 15th but one of the doctors told me today that was very optimistic!!!!

Taylor did not have a reaction to the injection last night. She had a very restless night of sleep and got sick a couple of times. She was very tired and lethargic today. She wanted badly to get up and play but just didn't have it in her. She enjoyed getting her nails painted by her RN and playing bingo with her doctor but that was about all. She wanted to lay with mommy and watch TV the majority of the day.

Taylor is so excited for Christmas and I am dreading it. I still can not fathom that I have to wake up on Christmas morning with only one of my daughters. I will stay with Taylor at the hospital for Christmas Eve and Christmas day but will try to find an hour or so to be with Savannah. The choice is excruciating but I just can't leave Taylor when she will not be feeling well. I pray that the girls are still young enough that they will only have a small memory of this Christmas and that next year we will all be back together.

At a time when I should be so excited that Taylor is finished with chemo, the reality of AML is truly hitting me. 3 AML patients that we know have taken a turn for the worse. One patient was not responding after 2 rounds of chemotherapy so is going to bone marrow transplant. Another was sent home on hospice after numerous rounds of chemotherapy and bone marrow transplant. The third child went through 5 rounds of chemotherapy and was in remission. He then relapsed and has gone through 2 separate bone marrow transplants. His body accepted both transplants but the leukemia has once again returned. I was awake most of the night last night asking "why does this happen?" I also stare at Taylor all night thinking...what is going to happen...will she go into remission.....will she go to transplant....we she ever be able to be "normal". These questions haunt me every minute of every day.... I think it is just the holiday season...it is so not what I thought we would be doing this Christmas.

Please pray for Taylor and all of the kids at PCH...such a tough time of the year.

Well, today will go down as a good and bad day. Taylor started off feeling well and had a little energy. She enjoyed visits from Aunt Kerri, Marty, Jamie, and Kim. Then the fun started.....Taylor received her last dose of IV chemo at noon today. This very large dose of chemotherapy infused over 3 hours. She did ok the first couple of hours but started to not feel well toward the end. She got very tired and her stomach was a little upset. She then had to receive a platelet transfusion. Her platelets weren't actually critically low but because she was to receive an injection (shot) of chemotherapy at 6:00, she had to be transfused because they were low enough that she was at high risk of bleeding from the injection. As always, she was pre-medicated with Tylenol, Benadryl, and Zantac to help prevent any reaction from the platelets. Well.....within the first 15 minutes of the reaction, she started getting a very red rash and hives on her face and in her ear. The transfusion was turned off and another large dose of Benadryl was given. The rash wasn't getting much better so they decided that she would not receive any more of the transfusion. Now.....they were unsure if she should receive the chemotherapy injection because there is also a risk of reaction to the injection. They also were not sure if she had received enough platelets???? So....to make a long story short, they consulted with the doctor in charge of AML patients and were instructed to give the injection. The benefits of the injection outweigh the risk of reaction (a reaction could also be handled with medication). So......the fun began. After receiving all of the Benadryl, Taylor was sound asleep. We had to wake her and explain that she would be getting a shot in her leg. She went crazy. She was screaming and begging me to "please not let them give her the shot!!!" I was crying and I think her RN was about ready to cry. But.....they got the injection done and we are now monitoring her for signs of reaction. So far...so good!!! We will watch her closely the rest of the night.

Now for the good news....hopefully this injection will be the last dose of chemotherapy that Taylor receives. This was the last dose for this round (which is hopefully her last round). So....we wait for her counts to hit zero and then come back up. We wait to see if she gets a fever/infection and then wait to see where we are at with her treatment. It is WAY too early to speculate as to how she is actually responding. I am just focused on the next very long weeks and keeping her out of ICU. My goal is to be home by January 15th......

After all that, I am off to watch her for any reaction. More tomorrow.....

Well, I am back from Dallas and Taylor has gotten through her dose of chemotherapy. I got back last night around 9:00pm and she started chemo at 12:00am. She is feeling good this morning and even asked for breakfast. Last week, the chemo didn't seem to affect her until after her second dose which will be today at noon. So....now we wait. Her counts are starting to come down. Her platelets are also dropping so will most likely need a platelet transfusion by the end of the week. She will receive chemo today at noon, tonight at midnight, tomorrow at noon, and then her next injection at 6:00pm on Wednesday. Her next injection has high potential for reaction so that is scary.....please pray for no reaction!! She is back on her eyedrops which she hates. She will have these every 4 hours until Friday at noon. During the day she is pretty good about doing them but the midnight and 4:00am dose is difficult!!!

I wanted to thank my dad for all his help this week. He took care of Savannah for us while I was gone....she had a great time with Papa!!!

I will try to update tonight.....

Quick post as I am frantically trying to get laundry done, pack my clothes for the next week at the hospital and get ready for a 7:00am flight to Dallas tomorrow. I came home around noon today to spend the afternoon with Savannah. I have to fly in to Dallas tomorrow for a work meeting. I will be home around 8:30 tomorrow night and go right back to the hospital. Taylor will start chemo again Monday at midnight.....luckily, I will make it back in time!!! Sean will be spending the day at the hospital tomorrow and my dad is at the house to help get Savannah to and from school tomorrow. Papa will also go down to help with Taylor on Monday.

Taylor is doing well. She seems to be feeling better today....the break from chemo has helped. She is getting her appetite back a little bit and wanting to play more. Her rash is much better. We did have to change her dressing today and her skin is really breaking down from all of the dressing changes. Her skin is bright red and looks miserable. My friend Keryn was there today when they changed her dressing and I watched Keryn cry right along with Taylor. It is so terrible to see how much it hurts Taylor.....she is so brave!!!

I will post more when I get back from Dallas.
XOXO
Kristen

Well....we have had quite a 24 hours. It started off yesterday with Taylor needing a dressing change....never fun. Then we found out that it would be necessary to have Taylor get another nasal swab for influenza. She had already received one negative results but it is necessary to have 2 negative swabs before Taylor can be cleared to go back to the oncology floor. The nasal swab is very painful. A very long q-tip is stuck into each nostril and pushed up very far. It is then swabbed for about 30 seconds. It is pure torture for Taylor and she has already had 4 done....so it was not fun. We got through both of those and tried to have a better afternoon.

Taylor had to have a blood transfusion last night. It started out well but about 35 minutes into it she became really restless so I went to check on her. Both of her legs and ears were very red and rashy. The transfusion was immediately turned off because she was reacting to the blood. She was given another dose of Benadryl and then the transfusion was re-started. Luckily, she did not have any reaction after that.

We woke up today to find out that her nasal swab was deemed "insufficient quantity" and needed to be re-done today. At this point, I talked with the doctors and nurses and we have decided not to do the swab again. I just can't put her through this....it is too much. So....we will stay on the 3rd floor in an isolation room for the remainder of this round. She is disappointed that she won't be able to see all of her "friends" downstairs but happy she doesn't have to be swabbed again. We had to move rooms today and we are now back in the room that we were in for all of round 4. This is a private room but they are having problems with the heat and the room is a SAUNA....it is so hot. They are trying to work on cooling it down....we are both very HOT!!!!

After all of this, we tried to enjoy the rest of our day. We enjoyed a visit from Michael and had a pizza party with Aunt Kerri and Uncle Shawn. Taylor was very irritable and feisty today.....I don't think she felt that well.

For the good news.....one of my best friends came by and has given Sean and I a new laptop!!! This will enable Sean, Savannah, Taylor and I to Skype.....we will be able to see each other via computer every night. Kim - thank you so much!!! I also wanted to thank Betty and Kimmie for trying to get this going for us. Betty tired to do this for us when Taylor was first diagnosed but our computers would not allow Skype to be downloaded.....thank you for trying!!!

I am also attaching a link to a video that Taylor and I participated in. Phoenix Children has a big Christmas fund raising dinner and they asked if I would share Taylor's story on their video. It turned our really well. Cheriese reported that there wasn't a dry eye in the audience after hearing about Taylor's story.....we hope our message helped get much needed donations and support for PCH!!!

http://www.youtube.com/watch?v=WvGtwBhQ-eo

I have also attached a picture of Taylor and one of her (favorite) RN's from the 3rd floor......she loves Amanda!!

Long day....going to take a COLD shower and try to get some sleep....this room is so HOT!!!

Will try to post about Taylor after get her to bed but wanted to quickly post a picture of Sean and Savannah on their "date" to The Nutcracker. We were lucky enough to get tickets through HopeKids for the performance. Savannah is so excited.....she wanted to go out for steak before the ballet!!!! I am so happy that she gets to do something just for her!!!

Today was another challenging day. Taylor really didn't feel well for most of the day. She didn't throw up but wouldn't eat much and just wanted to watch TV and lay down for most of the day. She was up a little bit to play Candyland but wanted to lay right back down. She just doesn't have any energy. Her rash has gotten worse. They actually don't think it is related to her chemotherapy....they are not sure what is causing it. They are going to give her a dose of Benadryl tonight to see if that helps at all.

Tonight at 6:00 she received her chemotherapy injection in her leg. It actually went better than I thought it would but was still pretty rough. She was extremely brave and strong. It has been 2 hours since the injection and she hasn't had a reaction so hopefully we are out of the woods.....

Taylor actually get a break in her chemo treatments until Tuesday at 12:00 am. Then she has the same protocol that she just went through again. She will get another injection next Wednesday at 6:00pm. Then we wait......

The picture above is of Taylor in a new hat from our friend Katie. Katie is the mom to one of our past roommates, Jake. Jake was downstairs for a MRI and Katie stopped up to visit. Taylor loves the hat.....thank you Katie!!!

I am off to get some rest....last night was a long night with not much sleep......

We are officially back in treatment. Taylor started her day feeling pretty well. She seemed a little tired but was up and around. She did not end up getting her shot today at 6:00 am. There was a little confusion with the timing....she will receive her 1st injection on Wednesday at 6:00 pm....much better time!! Things definitely took a turn this afternoon. Taylor started throwing up around 3:00 and finally stopped once she fell asleep. They have now given her 3 medications to help with the vomiting....I am hoping they are finally working....she is exhausted. She has also gotten her "rash" back that she gets each time. It is on her forehead and face this time. She is getting the eyedrops again every 4 hours....hopefully the rash won't go to her eyes this round. So......not the best start to this round. She is really not feeling well. She will get another dose of chemo tonight at midnight. I hope she sleeps through it.

We have only been here for 24 hours and I already miss Savannah so much. I can't stop thinking about what she said to me yesterday as Taylor and I drove off. Savannah said, "I will see you someday Mommy." As tragic as this situation is for Taylor, it is just as tragic for Savannah. How do I choose who I stay with on Christmas???? This question haunts me at night......

Enough for tonight....

Day 1, Round 5.....we are back. Taylor was re-admitted today after making counts at the clinic. We enjoyed our last day at home with Savannah. The girls played all day while I packed up and got ready. It was absolutely heartbreaking to leave.....everyone cried......even Harley was whining as we left. Being home on a break is amazing but it just makes leaving that much harder. You just start feeling "normal" again and then off we go...... I know we are supposed to focus on the fact this this is hopefully our last round and she is doing well, but......just gearing up for another round is so taxing. None of us slept well last night. Taylor start waking around 12:00 and didn't sleep much more the entire night. I think she was just anxious about going back in today......I know I was.

So...we got re-admitted to the 3rd floor. Taylor has to have 1 more negative swab for Influenza before she can go back to the 2nd (oncology) floor. She has made some great friends up on 3 so she was OK with being back up here for awhile. We also have our own room so it is nice.......

Chemotherapy starts at midnight tonight....yuk!!! It is one of the chemo's she has had each round. It is also the chemo that give her a rash. She will have to go on eyedrops every 4 hours while on this chemo to help prevent a rash in her eyes again. The bad news is tomorrow at 6:00 am she has to have a new chemotherapy in injection (shot) form. I am so worried about this. She will receive two injections (one tomorrow and one on day 9). The is a chance of anaphylactic reaction with these shots. If she does react, it will most likely be to the 2nd dose, not the one tomorrow. Either way...it freaks me out!!! I decided not to tell Taylor tonight that she will be woken up at 6:00 for a shot.....I was worried she would not sleep worrying about it. So....please pray the injection goes ok tomorrow.....what a way to wake up!!!

I have to keep reminding myself that this could be our last Round......there is hopefully an end in sight.

We had a great "break." We had a small birthday celebration for the girls. Thank you all for your amazing presents.....the girls love their new toys and clothes!! My dad and Grandma Renee were up and had great time with the girls. We decorated the house for Christmas. The girls spent the day with Miss Amy who took their picture for Christmas. Savannah didn't go to school while we were home so the girls enjoyed being together. We went for many walks and bike rides. We spent an evening with our good friends Jessica and Brett and drove through a Christmas lights display. We also got permission from Taylor's oncologists to attend the Make-A-Wish Christmas Party. We went with Aunt Kerri and had a great time. Taylor enjoyed seeing other kids and running like crazy!!!! Sean, Taylor, Savannah, and I also opened a few Christmas presents last night......great family time. All in all, it was a wonderful "break.".

Please pray for a "easy" round for Taylor. I am not sure how much more her little body can take......

Thanks,
Kristen

Thank you to everyone for all of your emails and texts today with well wishes and prayers for our clinic visit. Taylor is just a little shy of making her counts for Round 5 but they think by Monday she will be at the necessary level to start chemotherapy. So...we have an appt on Monday at 3:00 and will most likely be admitted. We also found out that she is no longer positive for Influenza so when we are re-admitted it will be on the oncology floor. She is excited to see all of her RN's!!! She also was sad today because she wanted to go to the 3rd floor to visit Christy and Amanda - 2 RN's she got really close to on her last round....Taylor misses you!!!

I also wanted to thank the family who made an anonymous donation to Sean and I from CBI. Thank you so much for your very generous donation and support....we truly appreciate it!

So....we are off to enjoy our last weekend of "normalcy." We are going to drive around and look at Christmas lights with some good friends....Taylor and Savannah are so excited!!!

I will post more on Monday after we get settled in.

Thanks,
Kristen

Hello all - sorry it has been so long since I have posted. We have been BUSY. We enjoyed a family Thanksgiving....it was great to be home in time for dinner. We have decorated the house inside and out for Christmas and we had a belated birthday celebration for Taylor and Savannah. They are having so much fun being back home together. Savannah is not going to school this week so the girls can make the most of their time together.

Taylor is feeling good. She gets really tired but is enjoying every moment of being a "normal" kid. Unfortunately, I have had to change her dressing twice since we have been home.....no fun!! Savannah is so sweet to her sister....she sits with Taylor and holds her hand while I change the dressing. Taylor goes back to the clinic on Friday to her her blood levels checked. Because we got sent home with a VERY low ANC (infection fighting level), I am hoping these levels have gone up considerably. If her counts are acceptable, we will be admitted on Monday for Round 5. We are excited to have another weekend at home.

Just wanted to provide a quick update.....we are all doing well. I will post again after her appointment on Friday.

Thanks,
Kristen