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

Happy Thanksgiving!!!

As my good friend Marcy says, Thanksgiving Miracles Do Happen......Taylor is HOME!!!!

Taylor's counts did not rise to the magical number of 250 (what is expected to go home) but she had an increase from yesterday, so......they agreed to let her go home. We have to be extremely careful because her infection fighting ability is very low. But.....we are home and that is all that matters!!!!

Will post more this weekend...off to enjoy some time with all of us together.

We are SO thankful for all of your love, support, and prayers.

Kristen, Sean, Taylor, and Savannah

Nothing much more to post for today. She is FINALLY sleeping. I am off to bed soon myself....long, emotional day!!

Thank you all so much to those of you who have called, emailed, and texted about bringing Thanksgiving dinner to Taylor and I tomorrow. Unfortunately, Taylor is not allowed to eat any "outside" food....so, we will pass. I would feel terrible eating "homemade" food in front of her. So....thank you again but we will be fine with PCH food.

Tonight in her prayers, Taylor asked God to "increase my numbers so I can be with my sister".....so sweet and heartbreaking!!!

XOXO
Kristen

Just talked to the doctors and Taylor's counts actually dropped from yesterday to today. So....no chance of going home today. You can imagine how disappointed she/we are. She is devastated....laying in bed crying for her sister and dog!!! I hate this!

Day 35 and very little movement in Taylor's numbers. She increased her counts by 7 today so we are not much closer to the magic number of "250". We were all disappointed with the increase but at least she went up and not down!! She is feeling good but going stir crazy in the room. Right now she is screaming at the top of her lungs because I turned off the TV. She is really starting to act out.....she is simply done being stuck in her room. Her strength continues to amaze me but she is close to her breaking point.....she needs to go home!!! So.....hopefully tomorrow brings higher counts!!

I participated in a charity event called The Real Gift Foundation with my team at work today. We helped prepare and deliver Thanksgiving food boxes for over 3,000 people. It is such an amazing experience. It was great to be with friends and do something outside of the hospital. Attached is a picture of myself, Marty, Jessica, and Michael. We were at one of the local Phoenix school delivering the Thanksgiving boxes. Thank you to the Phoenix North team for your time......it was great being back together as a team!!!

Another piece of great news......a friend of ours had her one year Transplant Anniversary this week and found out today that she is officially in remission from leukemia. Her name is Maggie and she is Taylor's age. Her family has provided so much love and support to us......we are so happy for Maggie and her family!!!

Love,

Kristen

Day 34 and Taylor finally had a little bit of a jump in her ANC. Her counts are now 124. She still needs to be at 250 to go home but we are thinking we might be home by Thanksgiving or Friday. We will take either day. She/I are SO ready to go home and have some "normal" time. We are just getting settled into bed and waiting for her platelet transfusion to begin. She had some more spontaneous bleeding today so it is time for yet another transfusion. Luckily, the have the exact match for Taylor today.....yeah!!!!

So...I am off to get ready for the transfusion.

I am working tomorrow.....will post when I get back.

Thanks,
Kristen

Day 33 and Taylor's counts are rising extremely slow. We were really hoping that she might go home early next week but if she continues rising at this pace we will be here quite a bit longer!!!! I am still praying we will be home for Thanksgiving but not even sure about that now.....

I ended up coming back to PCH yesterday afternoon. Taylor was having a hard time with me being gone so I didn't get to enjoy as much time with Savannah as I had hoped. Savannah and I made the most of our time that we had together but it is just so hard to leave her. A good friend of mine, Jamie, is going to come down to PCH tonight around 4:00 and sit with Taylor. Sean and Savannah are going to pick me up for dinner so I can at least see her for an hour or so.

Taylor is feeling good. She had a little stomach issue when I got back yesterday but is better today. She had a really hard time falling asleep last night so she was up really late. I hope that she will go to bed a little earlier tonight. She is ok today for RBC and platelets so no transfusions tonight.

As I was coming back into the hospital yesterday, I ran into one of the other mom's that I have gotten to be friends with. She and I were both having a really hard day. There are times when the whole situation hits you like a ton of bricks and it is hard to even catch your breath. While I was home with Savannah, I noticed that Christmas lights are being put out, stores are getting ready, and the mood is festive. Christmas has always been my favorite holiday but this year Christmas bring the reminder that my child is critically ill with a life threatening disease. What is their to celebrate??? I know that doesn't sound very nice, but it is my reality. Yes, I am thankful for Savannah but it is easy to have blinders on and only see your sick child. I know that next year Christmas will be much better but that seems like a really LONG time away.

Not much else going on around here. Will most again tomorrow or Tuesday.

Not much new to post for today. Taylor continues to be increasing her counts but SUPER slow. She is barely moving up. So....we are going to be here through the weekend and into next week.

I picked up Savannah from school today and will stay at home until tomorrow afternoon and then I will go back.

I will post more when I get back....

Taylor had another tough day. Her stomach is really bothering her and she has developed a really bad rash from going to the bathroom so much. She is eating again but everything seems to go right through her due to the C-diff. Poor little thing......even though, I know she doesn't feel well, she tried her best to have some energy to play. She had little bursts of energy and tried to do a little.

Her counts went up again a tiny bit today. They are hoping we might be home by Thanksgiving but we will definitely be back in for Christmas. She said today, "mommy, I will stay here for Thanksgiving, I just want to be home with my sister for Santa!!" It simply breaks my heart they will be separated on Christmas.

She and her friend Leo Weber talked on the phone today. He is downstairs on the 2nd floor getting another round of chemo. They were so cute on the phone. We looked at pictures of Leo on his caringbridge site and Taylor said, "Mommy, he's so cute!!!" I was teasing her that Leo is her boyfriend and she was giggling....it was wonderful to see her laughing!!!

That is all for tonight. Once again, I am just so tired....

Can't even think straight today...am so frustrated and exhausted. Today was crazy. I spent the majority of the day dealing with insurance issues. Because our insurance and Aetna no longer have a contract, things are getting very difficult. We are hoping to get things resolved soon but today was very stressful....

Taylor was still have stomach problems this morning. She has really bad diarrhea that is uncontrollable. She had accidents all morning and is extremely upset about this. She is so upset that she is having "accidents". So.....we sent a sample down today to be tested and I just got the results. Not good news.....Taylor tested positive for C-difficile. C-diff is a bacteria that lives in the stomach. When Taylor came down with fevers a couple of weeks ago, she was put on 3 antibiotics to treat any possible infection. Even though her blood cultures showed no infection, they continue on with the antibiotics because her immune system is so compromised. She is down to 1 antibiotic that she will continue on with until her blood counts recover. Because she has been antibiotics for so long, it has actually caused her good bacteria in her stomach to be destroyed and C-diff has grown. This causes extreme diarrhea and nausea (which she has been complaining about for awhile now). So.....she will go on another antibiotic to treat the c-diff. This antibiotic will be taken 4 times/day for 14 days. Taylor testing positive for c-diff is not good...her counts came up a little today but only to 10.....she is still pretty much at zero. They are thinking we have at least 7 - 10 more days in the hospital. It just seems like everything has happened this round.....

I also left today to take Savannah to her 4 year well check today. Her appointment went well except for the 4 immunizations she had to get. It was all I could do to watch her get the immunizations......I have had enough watching my children get poked and cry.

Thank you all for your encouraging messages since my post last night. I really appreciate the support. Things are just really piling up right now.......I am having a tough time this round. I continue to wish that I could be lying in the hospital bed instead of Taylor. This truly is too much for any child to endure.....it is just not fair. I so wish it were me and not her.....

Day 28 for Round 4 and Day 16 at zero with no signs of her infection fighting ability trending up. Taylor and I are both really feeling the stress of being in our hospital room for 28 days. Taylor is still being such a good girl but I can tell she is very frustrated (as am I). It is so unbelievably hard to not leave this room. At times, the walls feel like they are closing in on us. Taylor had a couple of big melt downs today and I know it is because she just wants out of here so bad (as do I). She felt good today but has some stomach issues start late afternoon. Her stomach is EXTREMELY distended. She doesn't seem to be in pain but her stomach is hard and huge. We will be having a consult in the AM to make sure that something is not going on. I pray it is nothing.....we can't take much more.

Thank you to all the were able to make it out to Cold Stone Creamery tonight....we truly appreciate your support.

Not much else to post for the day...I am really struggling with the reality of Taylor's situation today. Not that it hasn't been "real" for a long time, there are just days that I still have trouble believing that Taylor has AML. The reality of my leave with my job is also totally stressing me out. I don't have much more FMLA time left and am extremely worried about what we are going to do. Taylor is not even close to being done with treatment and then when she is, she won't be able to go back to daycare for quite some time. There are so many questions and no answers at this time..... When Taylor is asleep at night, I try to come up with answers but right now nothing is coming to me???? Christmas is also another big concern right now. There is almost no chance that Taylor will be home over Christmas. The thought of the girls not being together on Christmas is unthinkable!! Too much to think about.......

Thanks,
Kristen

So many posts tonight....sorry. I just wanted to remind everyone that is interested in going to the Cold Stone Creamery event. The event is tomorrow from 4:00 - 7:00 at the Cold Stone on Indian School and 44th St. 20% of all proceeds will be donated to PCH.

I also wanted to thank Eileen and Becca....thank you so much for promoting the event to your school. Taylor and I really appreciate your support.

I won't be at Cold Stone tomorrow. I will be at the hospital but Sean and Savannah will be there.

Thanks in advance if you are able to stop by and taste "Taylor's Creation"!!

Hello all - hope your week is off to a great start. Taylor had a good day. She is feeling SO much better than yesterday. For some reason, she really took a turn yesterday. She woke up feeling extra tired and complained that her stomach hurt. She either wanted me to lay in bed with her or to lay on the couch with me. She would not eat anything and was on the verge of spiking a fever all day. She was also having problems with her eyes. She rubbed them and covered them with her blankets most of the day. She didn't want any light in the room. As I mentioned in my previous post, she also ended up having another platelet transfusion. Her levels were critically low and she had a small amount of spontaneous bleeding. So....like, I mentioned, yesterday did not go as planned. I ran home for a couple quick hours and did laundry and packed up more clothes for this week. I decided not to stay at home because Taylor was feeling so crummy. So....I missed seeing Savannah all weekend!! She enjoyed spending the night with Grandma on Saturday and most of the day on Sunday.

After Taylor's transfusion last night, she slept through the night. She woke up this morning feeling much better. She was hungry and wanted to get out of bed. I ended up going to work so Sean stayed with her today. She played and felt great all day.

Her gums in her mouth are really swollen today which has been a sign in her previous rounds that her counts might slowly begin to rise......PLEASE!!! Today is Day 27 and we are still at zero. I am hoping we will wake up tomorrow and she will slowly starting climbing up.

That's all for tonight...we are off to read books.

Taylor and Kristen

The transfusion is over and luckily Taylor did not have a reaction. Her blood pressure dropped quite low for a short time (72/36 at one time) but came back up to an acceptable level. So......thank you all for your prayers, they worked.

There is much to post about today but I am off to get some sleep. Today took a toll on me and I want to try to sleep now in case the night doesn't go well.

If Taylor is feeling ok in the morning, I am going to work. I will post again when I get back.

Thank you again for your support and prayers.

Today has not gone as planned. I am at the hospital right now with Taylor and we are starting her platelet transfusion. Unfortunately, they did not have the exact match that Taylor needs so she is getting the same exact kind that she reacted to earlier this week.

I am beside myself with worry. Please pray.....

I will update later...the transfusion will go over 2 hours.

Hello all - hope your Sunday is off to a great start.

Taylor is sleeping. She had a rough night last night. She was extremely restless and tossed and turned all night. Finally, around 3:00 she completely woke up. When I asked her what was wrong, she said she just feels "funny". The RN's cant find anything wrong. Her vital signs are all normal, she is not running a fever and she is not having a reaction to anything. So....there is no answer to why she feels "funny". She finally fell back asleep around 5:00 so I am hoping she sleeps awhile longer.

Many of you have heard me reference a family that Taylor and I have become friends with. The McRae family....I know many of you follow their blog. For those of you who don't know, Kate is a 5 year old girl that Taylor just adores. Kate is fighting brain cancer right now. She and her family are amazing and have provided so much support to Taylor and I during Taylor's battle. I spoke to her mom a week or so ago about joining in and helping them do a Christmas toy drive for the patients who will be spending Christmas at PCH. The McRae family has come up with this idea so thank you to them for doing all of this. I simply just wanted to post about what they are doing and see if anyone is interested in helping. If you are, please see the details below:

"Kate's Crazy Cool Christmas Drive

• Please send an UNWRAPPED gift to Cornerstone Christian Fellowship 2211 E. Pecos Rd. #2 Chandler, AZ 85225
• Please have your gift arrive by December 15th. (this will give enough time to sort and get the gift ready to distribute to patients)
• Please mark the front of the box - Kate's Crazy Cool Christmas Drive
• Gift ideas: Infant..light up toys, noise making toys, crib mirror, Dora toys, Sesame Street toys, Thomas the Train. Preschool....chunky cars and trucks, pirate ships and figures,Fisher Price spiraling speedway, Princess toys, board games.....Perfection, Jumpin Monkeys, Pretty pretty princess, Operation, Pizza Pile up, battleship, Memory. Older Teen : beads,models (cars, airplanes etc)mp3 players, portable dvd players,ipod. THESE ARE JUST IDEAS.....ANY DONATIONS WOULD BE APPRECIATED. Clothes in any size are always appreciated.

If you have any questions about the drive, please email me at souzatwins@gmail.com. Please do not feel obligated to participate. Many of you have already done so much for Taylor. I know that I still get continued requests for ideas to help out, so thought you might be interested in helping the MANY children who will be spending Christmas at PCH. All of the gifts donated will first be handed out to the children on the oncology floor and then we will move on from there. Taylor will most likely be spending Christmas at the hospital so since I will already be here, I will try to help the Macrae family distribute gifts.

I am going home tonight to spend the evening with Savannah and take her to her 4 year well check at the pediatrician tomorrow (4 immunizations....yuk!). I am also going to work tomorrow so I will post again once I get back to the hospital on Monday night.

Just a quick post to update everyone regarding Taylor getting platelets today. Last night I mentioned that she would be getting a transfusion today but she did not get one today. Her platelet levels are low but still ok to go without a transfusion. She will most likely get one either Sunday or Monday (depending on her levels). Please pray for a reaction free transfusion!!

She had a good day today. She continues to be at zero so she has no ability to fight any type of infection or illness. So...I continue to be my neurotic self and clean everything in sight. I constantly harp on Taylor to not be on the floor, keep her hands out of her mouth, and make her sanitize her hands a million times a day. Taylor "cleans" with mommy every morning...she is my helper!!!

She enjoyed a visit yesterday from one of my college roommates, Tahna. It was so great to see her and Taylor has a new best friend....she loved Tahna!! We also had a great afternoon playing hide-and-seek with Sheetal and Amay....thank you for playing with her...she had a great time!!!

She was exhausted this evening so she actually feel asleep around 7:00. Please pray for Taylor's counts to start recovering. I worry about her staying at zero for such a long time. Please also pray for our friend Kate. She was back in the ER tonight with a fever.

Thanks,
Kristen

TGIF - I hope you are all doing well. Taylor has had a good couple of days. She received her RBC transfusion with no problem. Her counts are still at zero with no sign of trending up. Today is Day 24 of this round and she has been at zero for 11 days. So....we are hoping that any day she starts getting a few cells and starts to recover. Staying at zero for a long time this round is very common and with her being positive for Influzena it may take her even longer to recover. She is no longer on TPN....she is back to eating on her own. She is doing well with eating.

Tomorrow will be a big day. She will need to be transfused again with platelets. Because of the reaction last time, I am extremely nervous about her getting another transfusion. I know she will most likely be fine and have no reaction but it is very scary. Luckily the RN that helped Taylor through her reaction last time is working tomorrow, so she will be here watching/helping again this transfusion.

Taylor is still on a "high" from her birthday. All she can talk about is seeing her sister!!! Being together was a huge highlight for her....one that she will remember for a long time!!! She/I can't wait to be down with this round and spend some quality time with Savannah.....

As I mentioned a couple of days ago, there will be a charity event honoring Taylor and a couple of other oncology patients on Tuesday, November 17th. 20% of the proceeds will be given back to PCH. Below, I have pasted the press release that is going out about this event:

Local Businesses Raise Funds for Three Children Being Treated at
Phoenix Children’s Hospital

PHOENIX— Three Arizona businesses – Human Tribe Project, Cold Stone Creamery and Phoenix Children’s Hospital – will come together on Nov. 17 to raise money and show community support for three children being treated at Phoenix Children’s Hospital.

Three-year-old Taylor Souza was diagnosed with Leukemia in June after a routine doctor’s appointment lead to the discovery of bruising on her abdomen and legs.
At his routine 4 month pediatrician visit and many tests later, baby Joel Andrews was diagnosed with a rare disorder called N1F1 which affects 1 in 3,000 children.
Leo Weber, 4, was diagnosed with Burkitt’s Lymphoma, an aggressive form of cancer, in August and is currently undergoing chemotherapy.

All three families are finding it difficult to pay the bills, even with insurance. Joel, Taylor and Leo’s families have Tribe Pages on www.humantribeproject.com where they keep friends and family updated and raise money to bridge the gap between insurance and out-of-pocket expenses.

On Tuesday, Nov. 17 Cold Stone Creamery, Human Tribe Project and Phoenix Children’s Hospital will also help bridge this gap by fundraising for Joel, Taylor and Leo.

Cold Stone ice cream will also be handed out to children in the Phoenix Children’s Hospital cancer clinic at 10 a.m.

The fundraising will take place at Cold Stone Creamery on 4290 E. Indian School Rd., in Phoenix. Twenty percent of all proceeds from Cold Stone purchases made between 4. and 7 p.m. will be given back to Phoenix Children’s Hospital. Tribe Tag necklaces will be available for purchases and Phoenix Children’s Hospital will have an awareness booth with additional treats for children.

If you are able and interested, please stop by. We would truly appreciate your support for PCH. They have been so amazing to Taylor...anything we can do to give back to the other children here would be great.

Have a great weekend....will post again later this weekend.

Happy Birthday to Taylor and Savannah. I can't believe they are 4!! I think (pray) that today ended up being very Happy for the girls. Due to the very hard work of staff at PCH (Amanda, Chauntelle, and Dr. Jan) we were granted special permission for a 1 hour birthday party in Taylor's room with Savannah!!!! Yes....the girls were together on their birthday!!!!

On day 1 of this round, I started asking if there was any way that special permission would be granted for the girls to spend 5 minutes together on their birthday and share a cupcake. Luckily, one of Taylor's nurses, Amanda, is a twin and immediately started seeing what she could do to make this happen. Chauntelle, a child life specialist, also jumped in to help. Dr. Jan (Taylor's "talking doctor") made a few calls and helped pull some strings. Through ALL of their hard work, we were granted permission for Savannah to be brought up to Taylor's room to share an hour together. The staff at PCH went above and beyond today. Everyone stopped in to wish Taylor a Happy Birthday (thank you Katie O, Sophia, and Dr. Rosen)!!! When Savannah and Sean showed up, about 15 of our new friends at PCH were there with presents, birthday signs, and a lot of cheer. They all sang Happy Birthday and made their day extra special. When Savannah first walked through the door, she and Taylor ran into each other's arms....it was amazing (and very emotional!!!). Having the girls together again (it has been 22 days since they have seen each other) was the best present anyone could ask for. Words can not truly express how excited we were all to be together again. None of this would haven't happened if it wasn't for many amazing, caring, people at PCH. Chauntelle and Amanda - thank you so much!!!!

I also went to Savannah's school today to bring cupcakes to her class.....she was so excited. Thank you Keryn for sitting with Taylor!!!

All in all, it was a great 4th birthday for the girls!!! I have attached a couple of pictures from today.....Now....I am off to bed....long, emotional day!!!

A quick post this morning to let you all know that Taylor made it through the night without any reactions. She did fine. She is still getting a large dose of Benadryl every 6 hours. She is also being hooked up right now to receive another transfusion. She is not getting platelets today, she is receiving red blood cells. So, I am praying there is not another reaction.

I have been meaning to post a picture from Taylor's visit with our good friend Michael. I can't resist posting the picture (see attached) of Michael getting his nails done. Thank you Michael....Taylor had SO much fun during your visit.

I will post later tonight about their birthday. The transfusion is starting so I will be not taking my eyes off Taylor!!!

What started out as a normal day at PCH turned into one of the scariest days of my life. Taylor needed a platelet transfusion today. Her platelet levels were extremely low and she had even had a small amount of spontaneous bleeding from her gums in her mouth. We had some issues with the blood bank not having the exact match to transfuse her with so her transfusion was put off until this afternoon. Finally after waiting, the oncologists decided that we needed to go ahead and transfuse her with platelets that were not an exact match. We have had to do this once before and Taylor did fine with her transfusion. Taylor was pre-medicated with Tylenol and Benadryl prior to the transfusion. The RN stayed in the room with Taylor and I while she was being transfused for the first 15 minutes (if someone is going to have a reaction it usually happens within the first 15 minutes) and Taylor was doing well. All of a sudden, Taylor started coughing horribly and started vomiting. She vomited quite a bit and could not stop coughing. Within seconds, a rash started spreading all over her body. I called the RN in immediately and while she was here, Taylor started having trouble breathing. Either her tongue was swelling up or her throat was swelling up. I don't think I have ever been so scared in my life. Her oncology team was immediately in her room and more Benadryl was given. They also gave her a large dose of steroids to help with the reaction. With in about 30 minutes ( the longest 30 minutes I have ever experienced) she started breathing better and the rash started getting better. Throughout the ordeal, she was only able to whisper and could not talk normally. Finally, she was able to talk (but only very quietly). After about another 30 minutes Taylor was back to normal. She was very tired but was wanting to watch TV and order dinner. She ate pretty well and watched a movie. It was like nothing ever happened!!! She is so amazingly resilient....it is unbelievable. She is sound asleep right now. The plan for the night is to continue with Benadryl every 6 hours. There is also a chance that when the steroids wear off (around 3:00 am) she could have another reaction. So....she will be watched extremely close all night ( no sleep for me!!) If she does have another reaction, more steroids will be given. Please, please pray for Taylor tonight. I truly can't explain how scary today was. Please pray for no more reactions to the platelet transfusion.

Tomorrow is their birthday......4 years old. She is very excited. I have a huge surprise for the girls tomorrow but will post about that tomorrow.

For tonight, I am mentally drained....will post tomorrow.

Please pray for Taylor.

I have been meaning to update Taylor's blog regarding an organization that I have gotten involved with. Please go to www.humantribeproject.com to see what this organization is all about. The creator of the tribe project, Jaclyn Foutz, has been wonderful to Taylor and I.

From there, you can view Taylor's personal tribe page: http://humantribeproject.com/tribes/lovingtaylor

Jaclyn has set up an upcoming fundraising event for PCH. Jaclyn has worked with Cold Stone Creamery and on November 17th from 4:00 - 7:00, you can stop by and Taylor has created a special "ice cream creation". It is her favorite!!! There are also other oncology patients who have come up with special creations. 20% of all proceeds from this event will be given back to PCH. I am hoping that many of you can attend this event and support the numerous children at PCH. Details for the event are below:

Cold Stone Creamery
Indian School and 44th Street
November 17 4:00 - 7:00

I would like to thank Jaclyn for all of her help and support. Again, if there is any way to you could stop by and support this event, Taylor and I would be extremely grateful.

Happy Sunday....hope you all had a great weekend. I got back to the hospital this morning to find Taylor feeling MUCH better. She has had no more fevers and her appetite is back. She is not eating her normal amounts but is at least eating something every day. I am hoping that they will stop her TPN tomorrow. She will still get another dose tonight but hopefully that is it. She has gained a little weight back. She looks good. Her counts are still at zero with no signs of trending up. Today is Day 19....I am still aiming to be out in 40 days. Who knows with Taylor....she has recovered very quickly in some of her past rounds so I am praying that she might surprise everyone and recover quickly this round. Her spirits are back to normal and she is playing and being her normal, feisty self!!!

I had a great Saturday with Savannah.....it is just so hard to leave her. A big congratulations to Suzy and her running group. They all finished the marathon. Thank you all for your support and dedication.

Have a great week.

Kristen

It is amazing how resilient Taylor is. She had a rough night again last night. She had a lot of pain when she had to go potty and screamed in pain each time. But....she woke up this morning and went and didn't have much pain at all. She has not had a fever for over 24 hours now so hopefully she is out of the woods regarding fevers. Nothing has grown on her blood cultures. The doctors are going to begin slowly pulling back the antibiotics. She is on 3 right now, so they will discontinue one tomorrow. She had much more energy today than she has had over the past 3 days. She got dressed, did a few crafts, and even played with some of her toys. She also wanted to try eating a little bit. She will still be on TPN but I am hoping she will eat over the weekend and we will be able to stop TPN early next week.

I wasn't going to go home this weekend but because she is feeling so much better and because I miss Savannah so much, I decided to go home until early Sunday morning. I picked Savannah up from school and it was pure heaven seeing her. We enjoyed a home cooked meal from friends at the pre-school and met friends at the park so Savannah had a good night. It was so great to be outside breathing fresh air. I crave being outside after being in the hospital 24 hours a day!!!!

So...I will post again Sunday when I get back.

Have a good weekend.

My very good friend, Suzy, is running the PF Changs marathon this weekend on behalf of Taylor. I have attached a picture of her jersey....so cute. Thank you Suzy for doing this....we really appreciate it. It means the world to us.

Good luck this weekend!!!

We love you,

Kristen and Taylor

Well, I wish I could say that things got better after my post last night, but they didn't. Taylor fell asleep around 7:00 (very early for her) but got really restless around 8:45. We checked her temperature and she had spiked back up to about 102. So....after a lot of fighting, we got a dose of Tylenol down her. She was awake until around 12:00 am and then finally fell asleep. Because she is on 3 different antibiotics around the clock, there was alot going on in her room all night. She sleep on and off until around 4:00 and then was awake again until around 5:30. She finally woke up again around 7:30. So, needless to say, she was very tired this morning. She woke up feeling not much better than yesterday. She has not spiked another fever yet today which is great but will still be on antibiotics for quite awhile. She received TPN (her nutrition) over 12 hours last night and will get it again tonight. She is still not eating anything. If she doesn't start eating soon, they will increase her nutrition to around the clock. She complained that her stomach was really upset today so she is also back on nausea medication. She is finally sleeping....thank goodness. Taylor has also gotten a really bad "diaper rash". She only wears diapers at night but because her counts are at zero, she has gotten "mucositis". This is just term for being extremely red and inflamed. It is causing her to be in a lot of pain when she tries to go to the bathroom. She screams and cries. She is now trying not to pee because of the pain. We might have to start pain medication for this. So.....as you can see today is not turning out to be a great day.

I am hoping she sleeps for awhile this afternoon. I am going to try to get a nap in, I also haven't' slept for a couple of nights.

Please follow the link below to read about the amazing journey Joe Cajic has taken. Joe has been kind enough to help us and has made Taylor a recipient of a Sun Devil Charity fund that helps with our medical bills. I am so thrilled to announce that Joe just celebrated his 10 year leukemia free anniversary on Wednesday.

http://www.azcentral.com/sports/asu/articles/2009/11/04/20091104spt-boivincajic.html

Congratulations Joe.....thank you for all that you are doing for Taylor!!

Somewhat good news for the day we have had....Taylor's fever finally broke. Her fever could easily spike again tonight, so please pray for no more fever. So far nothing has grown on her blood cultures from early this morning. They will continue with 3 antibiotics until the final cultures come back (about 5 days). Taylor has not moved from the bed or couch the entire day....I have never seen her feel this bad. She is just feeling terrible.

Taylor has not eaten one bite of food today and only a couple bites yesterday. So...they are going to begin TPN (total parenteral nutrition) for a few days. This will be given through her central line. She is in desperate need of nutrients at this point.

I will post more tomorrow. Taylor wants me to either hold her or lay with her...poor little thing.

Wanted to quickly post an update because I am not sure what the day will bring. Taylor spiked a very high fever last night...103. Her heart rate was also very high. She was immediately put on 3 antibiotics and blood cultures were drawn. We are waiting to hear if anything comes back on the cultures. They have also added another line of fluid so right now we have 5 lines running in her...pretty scary. She had a hard time last night....feeling really bad. Will try to post later tonight when I know more.

Day 14...one of Taylor's worst days. She is not feeling well at all. She was either in bed or on the couch the entire day. She did not want to do crafts or much at all. She perked up a little when our friend Keryn visited and played hide and go seek for a bit. She quickly tired out from that and was back watching TV. She ate a bag of chips today...nothing else. She refuses to even try anything for dinner. She is simply exhausted and doesn't feel well. She is complaining that her stomach hurts so think we will try some nausea medication again tonight. She asked me tonight..."mommy, will I ever feel better??" Did I mention lately how much I hate all of this?????

On another note, Aleeya is doing much better. She will hopefully go home tomorrow on antibiotics but is doing great. Elijah is still in the ICU....he is hanging in there.

Here's hoping (praying) that Taylor feels better tomorrow.

Hello all - I am back at PCH with Taylor after spending some time with Savannah. Taylor is doing ok...her counts are at zero. She is rarely coughing but they are still keeping her on Tamiflu to ensure her symptoms don't come back again. She had a decent weekend but didn't feel well today. She is extremely tired but fighting going to sleep. She is getting a platelet transfusion tonight. Her platelets are dangerously low....she is at high risk for bleeding. She finally starting eating a little bit again. She has lost a little over a pound. Right now there aren't going to put an NG tube down but will re-consider if she doesn't start taking in enough calories. So...now we wait for her counts to re-bound. She will most likely be at zero for a couple of weeks and then slowly her counts will come back up.

Savannah had a tough weekend. The reality of the girls not being able to see each is really hitting her. She misses her sister SO much. Yesterday we were watching a movie and Savannah started crying. I asked her what was wrong and she said she was upset because I wouldn't take her to see her sister. She also asked me "why did God make Taylor sick?" What do you say......??

That is it for tonight....I am going to crawl into bed with Taylor. I hate when she gets transfusion....I worry about her having a reaction. Being next to her while the platelets are transfusing makes me feel a little bit better.

Have a good week...

Happy Halloween. Attached are pictures of the girls from today. I spent the morning with Taylor and afternoon with Savannah. It was great being with them, but horrible being with them seperately!!! Savannah started crying tonight because she missed Taylor so much!! This is just no fun!!!

Quick post tonight as I have a splitting headache!! Taylor was not feeling well for most of the day. She threw up her dose of Tamiflu this morning and would not eat anything. Her lungs are still clear and have no evidence of pneumonia. She finally agreed to try a banana after I threatened her (I hate doing this!!) with them putting a tube down her nose. This seemed to work because she did eat almost a whole banana....yeah!!! She was very lethargic for most of the day but seemed to get a little energy late afternoon. She did a couple of puzzles and practiced writing her name. She ended up eating a small piece of pizza tonight.....yeah!!! She says she feels better but is just tired and coughing a ton. She didn't get much sleep last night from all of her coughing. So....she is watching a movie and is almost asleep.

Her blood counts are dropping quickly. I never thought I would be excited about this but I am....the sooner her counts get to zero, the sooner she comes back up!!!! I am hoping she will be at zero by early next week.

I am hoping the worst of the flu is over and she will feel better tomorrow and start eating. They have agreed to hold off on a NG (tube down her nose to give food) for a couple of days. I really don't want her to go through this. As long as she eats a little bit each day, I think she will be safe!! Let's hope!!

I am going home tomorrow afternoon to spend some time with Savannah on Halloween. I will post again when I get back.

Happy Halloween.

Another fun day at PCH!!! Taylor coughed most of the night and was still coughing this morning. So, they decided to swab her again to see if something else was going on. She tested positive for H1N1....seriously!!! They were also concerned that she might have pneumonia so she was taken down for a chest x-ray. Luckily her lungs are clear and she doesn't have pneumonia. They are re-starting her on Tamiflu. She will get chest x-rays every 2-3 days for awhile to make sure her lungs stay clear. She had a pretty good morning but started throwing up this afternoon. She threw up a couple of times and then seemed fine. She has not eaten 1 bite of food today and just threw up again about 5 times. They are going to give her a second nausea medication to see if that will help. She is also getting a blood transfusion tonight. So....alot going on today!!!

Hopefully tomorrow will be a better day. For those of you who had expressed interest in visiting over the next couple of days, please hold off. We are in isolation and they don't want any visitors for a couple of days.

Aleeya is still in the PICU. She has a bacterial infection and her body went into septic shock. She is on numerous antibiotics and blood pressure medications. Her blood pressure has been really low. She will stay in the PICU until they can get her infection under control and then back up to the 2nd floor. They don't think this has anything to do with her leukemia. As far as I know, she is still in remission, but very sick. Please continue to pray for her.

Thank you all for your prayers for Taylor....she needs them right now.

Kristen

Another post for tonight unrelated to Taylor. I just came up from the ER at PCH. Unfortunately, I was with my good friend Athena and her daughter Aleeya. As many of you know, Aleeya has been Taylor's roommate and BFF since she was diagnosed with Leukemia. Aleeya finished all of her rounds of chemotherapy about 2 weeks ago. Her parents brought her in tonight with a fever around 104. After 2 doses of Tylenol, her fever still hasn't broken. They are thinking she might have an infection in her Central line. She is being admitted to ICU as I type. Please, please pray for her. Her mom is very scared and Aleeya is very sick. She needs all of our prayers right now.

Have I mentioned lately how much I DESPISE all of this. When is it going to get better????

Quick post tonight as I am trying to get Taylor to bed early. We had an absolutely miserable night. She fell asleep at a decent time but I had to wake her up at 10:00 to take Tylenol. This was necessary to help with any reaction to the chemotherapy. As you can imagine, she was not happy about being woken up and having to take medicine. Since all of this has started, she despises the taste of Tylenol. She spits it out every time she has to take it. So having to be woken up to take this was no fun. She was really upset....kicking, hitting and screaming. I finally got most of the dose in her and she threw it right back up!!! They then started her chemotherapy. Because of the type of chemo and the intensity, it was necessary to monitor her blood pressure, temperature, heart rate, and oxygen level every 15 minutes for an hour. Then, it had to be done every half and hour for an hour. Then it had to be done every hour for 6 hours. So.....as you can imagine, there was no sleep. She was miserable with being hooked up to the vitals machine. She would just fall asleep and the machine would go off. I think it would be safe to say, she/I slept about 1 hour total last night. She is exhausted. She has not done much all day. Her stomach is hurting and she has no appetite. All she has eaten today is a banana. I think that her eye infection is starting again in her left eye. She wanted the shades down all day and no lights on. She rubbed her eye all day. Her cough has also come back today. Because she is coughing again, they think the Influenza A is coming back. This is very common when immunocompromised kids get the flu. They can have symptoms for a few days then they go away and come back again. So.....because she has already had Tamiflu, she can't have it again. Not sure what they are going to do....we should know more tomorrow. Today definetely was not her best day.

I wanted to also provide guidelines for anyone who is going to get the H1N1 vaccination or if they are getting it for their kids. If you or your children get the "live" virus (nasal mist), please do not plan on visiting Taylor for at least 7 days. Because the virus is considered "live", it could be passed onto her. If you or your children get the H1N1 "dead" virus (shot), you are fine to visit right away. I hope this makes sense......we can't expose Taylor to the "live" virus.

Off to get her to bed and to go to bed myself. I am working tomorrow so need to get some sleep.

Hope you had a good day.

Kristen