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...