Great News.....Taylor's monthly check up once again shows NED!!! We could not be more thrilled. This month's test brought a ton of anxiety. I think it is because of the holidays. It is just so hard to believe that this time last year Taylor was getting another round of chemo and was very close to moving into the ICU. Her last round was her toughest and it is still so hard to believe that I am taking her to school every day with Savannah instead of watching the chemo drip into her little body!!!! Miracles do happen!!

Thank you all for your continued love, support, and prayers.

Happy Holidays.

Happy 5th birthday to Taylor and Savannah.....I truly can not believe the girls turned 5 on November 11th. To say that our life is different this year is an understatement. At this time last year, Taylor was in her 4th round of chemotherapy and not feeling well at all. It is amazing to me that a year later she continues to be in remission and has so much energy that I can hardly keep up with her. Miracles do happen and prayers are answered.....

We took the girls to Disneyland for their birthday. We had an amazing trip. The girls loved every minute of it. Disneyland started their "Christmas wonderland" while we were there and it was truly amazing. There were so many times while at Disneyland that I had to truly stop and remind myself that last year I was living at PCH with my child who has leukemia....amazing!!!

Anyway....it was a magical birthday and I will cherish every moment of our trip. I have attached a few pictures from our trip. My favorite is the one with both girls sleeping in the stroller.....this was from our last day at Disney....we got there at 8:00am and left at 8:15 pm......we were all exhausted!!!!

Happy Birthday Taylor and Savannah!!!

GREAT NEWS!!!

NED again this month. For some reason, I was very nervous about Taylor's check up this month but today ended on a very positive note....another month of remission!!!

Taylor and Savannah are both doing great. Their 5th birthday is November 11th and they have chosen for Sean and I to take them to Disneyland instead of having a birthday party. So....we are off for 2 days of Princess Fun at Disneyland. I will post pictures when we get back.

Thank you all for your continued support and concern.

Quick post to let you know that Taylor's monthly test was changed from today until Friday. I will post results late Friday afternoon.

Thanks to all that checked in today....

The girls and I enjoyed a "pink" day. We went to the Pinkalicious play. I have never seen so much PINK in all my life. We had a great time!!!

Quick post with some current pictures to let you know that all continues to go well with us. There are 2 pictures of Taylor and Savannah from when Taylor was an honored guest at the Wish Event at Cold Stone Creamery. The girls had a great time and loved the ice cream!!

Taylor got her "1st" haircut this weekend from Janeen!! She was so excited and Janeen made our visit super special!! Taylor loves her "long" hair!!!

Taylor's next monthly check up is November 1st!!!

Happy Friday....it is a great Friday for us. Taylor had her monthly check-up today and she continues to be NED - No Evidence of Disease!!!

Thanks so much for your continued support and prayers!!!

Taylor has been chosen as an honor patient for the PF Changs Rock-N-Roll Marathon. Please visit the fundraising pages below if you are interested in supporting the girls running for her:

www.firstgiving.com/kristenway
www.firstgiving.com/katelyneberhardt

Thanks for your support.

For those of you who live in the Phoenix Metro area and are available, please join us on Thursday, September 30 at Cold Stone Creamery at 12625 N. Tatum Blvd (by PV Mall). Make -A-Wish is hosting a fundraiser and proceeds from the night's sales go to help fund more "wishes". Taylor has been asked to be a "special guest" for the night!! We would love to see you there!!! We will be there from 5:15 - 6:30.

Today we walked in the HopeKids Charity Walk. Thank you SOOO much to all that generously donated to this amazing cause. TEAM TAYLOR met their fundraising goal at an AMAZING $2800. Again, thank you so much for your donations and support. Through the fundraising efforts of all walkers, HopeKids made over $60,000 this year in donations. Thank you also to our amazing friends, the Stockers....thank you for walking with us. We loved having you with us (picture above of MacKenna Stocker, Remi Stocker, Savannah and Taylor).

I am off and running with my next fundraising efforts. In November, we will take part in the "Light The Night" Leukemia walk. Once I get my fundraising page completed, I will send it on....

Taylor's monthly check up is Friday. As always, please pray for NED (No Evidence of Disease).

Thanks so much!!!

We have 1 week to go before our big HopeKids Charity Walk. Please visit our fundraising page at www.firstgiving.com/kristensouza. No donation is too small. We are just short of our TEAM TAYLOR fundraising goal.

Thanks for your support!!!

I just posted a picture of the girls from "Dawson's Dash" that we did today in Flagstaff. Taylor, Savannah and I walked with a family and friends in honor of Dawson Merrick who lost his battle with leukemia last September. We had a great time and the girls loved "walking for Dawson".

We want to thank Donn, Audra, and Delaney Merrick for including us in this event....we love you guys!!!

Please visit Taylor's fundraising page at http://www.firstgiving.com/kristensouza

The HopeKids walk that we are fundraising for is right around the corner....we appreciate your support and generosity.

Couple of quick pictures to share:

Taylor and Savannah started ballet/tap with their friend Remi. Picture is of their first day of class....they LOVE it!!! It is adorable to watch them.....

Taylor, Savannah, and Sean got me a Princess cake for my birthday. Savannah picked my birthday restaurant and we enjoyed a GREAT dinner at IHOP!!!!!!

GREAT NEWS.....Taylor continues to be in REMISSION....NED!!! Thank you again for your love, support and prayers.

I can't believe the summer is coming to an end.



Taylor and Savannah started Pre-K last Tuesday. It was an emotional day. I remember the year before when I dropped Savannah off on her 1st day (without Taylor) and rushed back to PCH to be with Taylor. I am so thankful that this year is different. The girls got to go back to school TOGETHER!!!! They LOVE Pre-K and are learning so much. They have great teachers again this year and lots of friends in their class.



Taylor is doing much better since her eye surgery. She had a really tough week. A couple days after the surgery she and I ended up spending an afternoon in the ER at PCH. Taylor's left eye was looking infected and she refused to open it. She ended up having a Corneal Abrasion in her eye. She had a really rough few days but is so much better now. The redness is almost gone and she is back to herself!!!



Sean and I went up to Flagstaff today to participate in a "Climb for Cancer" event. We were part of the "Do it For Dawson" team. Dawson is a friend who lost his battle with cancer last year. We were in the room next to Dawson at PCH and I also grew with with Dawson's dad and brother. It was a great day but an emotional day also. Watching the Merrick family cross the finish line without Dawson brought up so many emotions. We are just so thankful and honored that we got to participate with his family. Donn, Audra, and Delaney - we continue to think of you often..we are so glad you are part of our lives!!!



Taylor's next appointment is on August 30th. Thank you in advance for your prayers and support for NED!!!!



Also, please visit Taylor's fundraising page.... www.firstgiving.com/kristensouza

Just a quick update on Taylor's eye surgery today. She is home and sleeping. She did well in the surgery but was in a lot of pain after. She has bleeding from the corner of each eye (which is normal) but the doctor thinks/expect her to have no complications. We go back into the eye doctor next Wednesday.

Thanks for your prayers.

The summer has truly gotten away from me. I guess that everything truly happens for a reason because having the summer to spend with the girls was great. Not that I would have chosen to be unemployed in this tough job market, but really had a great time being a"mom"!!!

We had a great couple weeks in Montana with Papa and Grandma Renee. Montana is amazing and we love it there. Taylor and Savannah loved every minute of being outside.....playgrounds, parks, hiking, swimming, and playing with their cousins, Tommy and Lizzie. It was a wonderful experience and one we hope to do over every summer!!!

Now that we are home, the girls have finished up summer camp and have a week at home before they start Pre-K!!! Taylor is having a outpatient eye surgery on Wednesday. Before Taylor got Leukemia, she had problems with being very crossed eye'd. The glasses were not helping so surgery is now necessary. She will continue to wear her glasses even after the surgery. The surgery is supposed to be very easy. She should be fine by the next day but will have extremely red eyes for a couple of weeks. Even though I have been assured by many that the surgery is not a big deal, I still worry....what else does she have to go through????

Sean, Taylor, Savannah, and I will be participating in charity event on September 26th. Please visit my fundraising page if you are interested and able to donate....thank you for your support.



http://www.firstgiving.com/kristensouza

Will post after Taylor's surgery....

Thanks,
Kristen

GREAT NEWS......Taylor continues to be NED (No Evidence of Disease)!!!!

Thank you all for your prayers and support.

Her next appointment is August 23rd.

I will post more about our summer later.....

Happy Belated 4th of July. I can't believe it has been so long since I have posted. Who would have known unemployment could be so busy!!!!

Things have been going well. Taylor continues to do really well. She has been attending Art Camp at her preschool a couple days a week and LOVES it. She is interacting well and loves being back at school. The girls go on a field trip on Thursday and love every minute of it. They get to ride on a school bus.....they love going without Mommy!!!!

We enjoyed 4th of July with our great friends, The Stockers. We all drove out to Redondo Beach and spent the weekend with Keryn's parents. The weather was amazing and we had so much fun. The drive home was LONG......the normal 6 hour drive took Keryn and I 10 hours. 10 hours in the car with Keryn, 4 girls under the age of 6 and myself.....it was LONG and LOUD! But....we had a great weekend and Taylor and Savannah enjoyed every minute of their trip!!!

The girls and I are now up in Montana visiting Papa (my dad) and Grandma Renee. We are having a fabulous trip. The weather is amazing and the girls are running and playing with their cousins every chance they get. Montana is absolutely beautiful...

Taylor's next blood test is July 23rd. Please continue adding her to your prayers....No Evidence of Disease please!!!

I will post after her test but for now I am off to enjoy Montana!!!!

Quick post.....For those of you who live in Phoenix, a great friend of mine has organized a blood drive this weekend at his church. According to the Red Cross, they are at a "super-critical" stage with blood banks being very low. If able, please attend and give blood.

Community Blood Drive
Unity of Divine Love Spiritual Center
325 N. Austin Dr. Suite 4
Chandler, AZ 85226
Sunday, June 27th
8:30 - 12"30 pm

Schedule by appointment online or by phone:
www.redcrossblood.org
Enter sponsor code: unityofdivinelove

or 1-866-236-3276

For more information contact Jim Mulvany at jmulvany@mac.com

Thanks so much to Jim and his family for doing this!!! Lives depend on this.

Well...it has been a full week of unemployment for Sean and I. We are both actively trying to find jobs but as many of you know, the market is tough right now. We continue to try to focus on the GREAT news from last Friday of NED (No Evidence of Disease) for Taylor.

I can't believe that 1 year ago last week, our unbelievable journey of Leukemia began. I am so thankful that today we are no longer living in the world of central lines, dressing changes, chemotherapy, and numerous side effects. We now try to live month-to-month. Each month brings more happiness and joy that Taylor continues to be healthy. Each month I continue to have so much anxiety around her blood tests. Every bruise, cough, stomach ache, etc causes me to worry that the Leukemia is back...but each month she proves me wrong. She is so strong and brave. She is also SO happy to be a kid again. The things that are normal to most children mean so much to us now.....swimming, bike riding, watching movie together, and just being "normal". It is hard to put into words but just being home and seeing Taylor and Savannah together is worth everything. As I also reflect back on our journey, I truly realize that the love, support, and prayers that we received from all of you will never be forgotten. So....thank you again to ALL of you for believing in Taylor and your continued prayers.

With all of that being said....when I am sad and stressed about being unemployed, I do look at Taylor and Savannah and my world is put back into perspective. It is truly about them. I don't know what my next employment path is going to bring but I do know that if my 4 year old amazing daughter can live through 8 months of INTENSIVE treatment, I can do whatever it takes to give them a great life!!!

To Courtney - we miss you so much. Thank you for all that you did for all of us. You are truly amazing and loved by all of us so much.

I will continue to post updates as they come along.

XOXO
Kristen

Well....at least we had a good ending to a crappy week. Taylor continues to be NED - No Evidence of Disease.

I will post more this weekend but wanted to share the great news.

Thank you for your prayers.

Have a good weekend,
Kristen

Tonight I post with a very heavy heart. Like many of my friends at Takeda, Sean and I have both been let go from Takeda. Today was a very tough day. My heart and prayers go out to all of my friends that have been let go....

I really don't know what to say......really bad day.

As I have mentioned in my earlier posts, Taylor's next Leukemia check is this Friday. Please, please pray for good news....

It is truly hard to believe that after 11 1/2 years at Takeda, I am now unemployed!!!

Friday has to bring good news.....

Well...things have been a little crazy for us. Taylor started feeling sick last Thursday. I took her to the doctor and as I suspected she had croup. She had gotten a horrible cough and was losing her voice. She had a rough day on Friday and woke up feeling worse on Saturday. So...back to the pediatrician we went. I was worried that she was dehydrated and her cough was getting worse. They didn't think she was dehydrated and felt like she was OK. By Sunday she was feeling even worse. She woke up on Sunday night at 10:30 pm and she and I stayed up the ENTIRE rest of the night. She couldn't sleep because every time she would even start to nod off she would have a coughing attach. By early Monday AM, she was crying that her ears hurt. So.....off to the pediatrician we went again on Monday.....double ear infections!!!! While we were at the pediatrician, they decided to draw labs on her because she was not getting any better. If you all recall, almost 1 year ago, our nightmare began with an ear infection and getting labs drawn. I was beside myself. I was trying so hard to not let on to Taylor that I was super scared. All I could think was that the lab results were going to show leukemia cells were back. After waiting most of the day, the pediatrician called and sent Taylor and I to the ER for 3 bags of fluids. She was VERY dehydrated and they were also worried that she might have pneumonia. They ALSO called the oncologists to go over her blood work because some of her levels were slightly elevated......SCARY. After about 2 hours in the ER, they finally let me know that they had consulted with Oncology again and the Leukemia was NOT back....thank goodness. She also does not have pneumonia but does have bronchitis. So....after hours of getting IV fluids, I took my poor, sick baby home....double ear infections, croup, and bronchitis. What a couple of days. I can't even explain how scared we were....I really believed our nightmare was starting all over. But now that she has 4 days on antibiotics in her she is doing much better. She got to go to her last day of tennis camp today and was excited. Their field trip was to a Diamondbacks game and the girls LOVED it....they had a great time.

Other than all of the sickness drama, we are doing OK. Taylor's next monthly leukemia check was changed to June 18th....exactly 1 year from her diagnosis. I still can't decided if this is a good or bad sign....please pray for it to be a good sign.....No Evidence of Disease!!!

Sean and I are anxiously awaiting June 15th....the day we find out if we are still employed. The waiting is hard. To all of my many Takeda friends, you are all in my prayers for June 15th. My fingers and toes are crossed for all of you. Over the past 11 years, I have made life long friends at Takeda....I think of many of you as family. We truly wish you the best!!!

So...I will post again on the 15th about our jobs and then again on June 18th about Taylor's results....it is going to be a scary week.

Happy Memorial Day. We hope that you all had a wonderful day with family and friends.

Taylor and Savannah started tennis camp today!!! They had a great time. Taylor did much better a drop off than I thought she would. They loved every minute of it and came home EXHAUSTED!!! I have attached a couple of pictures from their first day. For those of you who are here in Phoenix....if you are looking for a GREAT camp, check out Seth Korey's tennis camp....it is so fun!!!!

I received the link to the interview that Taylor and I did for Hope Kids...please click on the link below to view it...

Here’s a link to the story CH 15 ran this morning! THANK you to everyone who helped…especially little Taylor what a brave little girl!!! http://www.abc15.com/dpp/news/region_phoenix_metro/central_phoenix/valley-motorcycle-drag-racer-giving-kids-hope

We again hope you had a great day....

Just a quick update to let you all know that Taylor and I did an interview for an organization, Hope Kids, that we got involved with while Taylor was in the hospital. If you are interested in watching the interview, it will run tomorrow, May 28th on Channel 15 (ABC) from 5 - 7AM.

I am so sorry it has been so long since my last post. There has been so much going on with work and I have lost track of time.

Taylor continues to do really well. She is just doing great. She continues to have a ton of energy and spunk!!! She is so amazing....you would never thought she was sick. She is truly one of the strongest people I have ever met.

She and Savannah will be starting tennis camp on June 1st. This is a huge deal.....Taylor has either been in the hospital, at home with me, or with Courtney since last June. She is very excited about going to camp but continues to think that "mommy" will be staying with her. Her first day should be "interesting"!!! Coach Seth...you have your work cut out for you!!! Savannah is also very excited but doesn't want to wear tennis shoes.....shoes "hurt" her and she wants to wear her flip flops to tennis camp.....the joys of having a 4 year old!!! Anyway....I am so excited for Taylor to be a "normal" 4 year old again.

Last Saturday was a day that I will never forget. My cousin Kerri (Aunt Kerri to the girls) and I went and got tattoo's together. I got the leukemia ribbon with the word "Believe" above it. My cousin got the Down's Syndrome tattoo with "Believe". Her son, my godchild Kyl, has Down Syndrome. It was an amazing experience and I feel so blessed to have shared it with Kerri. While getting our tattoo's (which did hurt!!) we talked about how inconsequential the pain of getting a tattoo is compared to all that Taylor has gone through. Taylor and all of the children facing cancer or a life with Down's Syndrome truly are my hero's!!! After I got home from getting my tattoo, Sean also went and got the same one..... I have attached a picture of my ankle....Sean's looks exactly the same. Kerri's ribbon is blue and gold which symbolizes Down Syndrome and leukemia.

Taylor's next appointment is June 14th.....my stomach already hurts worrying about it!! Please continue to add Taylor to your prayers...thank you for your support.

June 15th is the big day for layoffs at Takeda. To all of my friends at Takeda.....I am praying for all of you and hoping for the best!!!

The girls and received tickets from Make-A-Wish today for The Glee Tour.....so fun!!! We had a great time. The girls loved the music and had a great time....thank you Make-A-Wish.

We had an OK week. Both girls got hit with a stomach bug...they both threw up all Tuesday night and had a long day on the couch on Wednesday. I ended up taking Taylor to the doctor on Thursday because I was worried she was dehydrated but she ended up being OK. So.....a quiet week for the girls and now they are feeling much better.

Sean and I found out that Takeda (where we work) is going through lay-offs. So.....we will find out on June 15th is we have jobs......no fun!!!

Anyway....I hope you all had a great week.

A quick update on Taylor's test results from today.....NED - No Evidence of Disease!!!!
Thank you for your love, support, and prayers.

Happy Mother's Day!!!!

More pictures from our amazing trip....

What a week. Taylor's Make-A-Wish trip was more than we ever imagined. I have so many pictures to post so thought I would do a couple at a time. The ones above are from the Make-A-Wish send off dinner and the morning we left for Disneyland. I will post more Disneyland pictures throughout the week.

So.....the trip started with a dinner on Saturday night with Taylor's Wish Granters - Rick, Regina, and Rachel!!! We enjoyed Taylor and Savannah's favorite restaurant, Pei Wei, and ice cream after. They had a great time at the send off dinner....

Sunday started with a stretch hummer limo picking us up. Taylor and Savannah could not get over the limo.....they loved it. We were met at the airport by the Wish Granters and received they royal treatment from Southwest Airlines....gifts, priority boarding, and a tour of the airplane!!! We landed in Orange County and were met by 3 firemen. They helped us with our luggage and made sure we got our rental car....again, they royal treatment. The girls loved the firemen!!!

We made our way to the Paradise Pier Hotel at Disneyland. We got checked in and headed out to Downtown Disney.......we enjoyed dinner with friends and called it a night.

Monday and Tuesday consisted of 11 hours each day of Disneyland!!! It was amazing.....breakfast with The Princesses, private meetings with Mickey and Minnie Mouse, and priority passes so we didn't have to wait in line for any rides....UNBELIEVABLE!!! The girls were beyond excited.....they had the very best time. Words really can not express how amazing Disneyland was....to see Taylor and Savannah so happy (and healthy) was an amazing gift!!!

Wednesday we were off again to Knotts Berry Farm. We spent the morning there and enjoyed meeting Snoopy!!! We then spent some time at the Fire station of the firemen who met us at the airport. The girls (and I) were treated to a ride in the firetruck with sirens and lights going. It was so fun and the girls LOVED it!!! Donovan and Danny (the firemen) were so sweet to the girls....played tag, showed us around the firehouse, put all of their gear on, and were just amazing. Our visit to the station was GREAT!!! From there, we spent the afternoon at the beach....sandcastles, sea shells, and putting our feet in the water...so fun!!!

Thursday we were back at Disneyland for another 11 hours.....WOW!!!! Again, a truly magical day!!!

Our last day, Friday ended with the girls getting to go to Build-A-Bear...another big hit!!

All in all, words truly can not express the gratitude we feel toward Make-A-Wish. I never imagined our trip could be so special. We have life long memories from the trip.....it was AMAZING!!!! Thank you so much to Make-A-Wish!!!!

I will post more pictures from our trip later this week......

Please continue to pray for NED (No Evidence of Disease) for Taylor. Her next appointment is Monday at 3:30....I will post the results as soon as we get them!!

Quick update as I know it has been awhile since I have posted. Last week was such a tough week....2 funerals for children (friends) under the age of 2!!! I have now attended more funerals in the past 6 months than I have in my entire life...it just doesn't seem fair. I keep asking myself when this nightmare will end...... Two of our new friends through the hospital continue to struggle with their children's cancer...the Weber's and the MacRae's...again, when does this nightmare end????

Anyway, on a positive note, Taylor continues to do well. She has been complaining lately that she is really tired and has leg and back pain. This is a huge concern (these complaints can go along with leukemia) but I am hoping/praying that she is just "growing" and so active that she is feeling tired. We will see....she has another blood test in the next couple of days.

We are off to Disneyland for Taylor's Make-A-Wish trip on Sunday...the girls can't wait. We have a send off dinner for Make-A-Wish on Saturday night....they are an amazing organization. Once things settle down a little bit, I will be applying to become a "Wish Granter" for them......

I am in Chicago all week for work. It was my first time leaving Taylor for the entire week since she got sick. We had a very emotional good bye on Sunday and she asks me every time I call "when will you be home Mommy". So hard to be away from her and Savannah.

Thank you all for your support and continued prayers.

A quick post to ask for your prayers for 2 families.....this has been a tough week

Katie and Mark Cosmas (friends of our) suffered a devastating loss on Sunday. Their 5 month old baby girl, Taylor Paige Cosmas, passed away suddenly. Please visit their Caring Bridge site for more information (www.caringbridge.com - enter in taylorpaigecosmas to find their site) Please add them to your prayers....this is such a tragedy.

Zachary, a little boy we met through Taylor's hospital stays passed away. He had both AML and ALL (very uncommon). He suffered a tough fight. Please add his family to your prayers.

I will post more this weekend.

I feel so bad that I haven't posted for so long. No news is good news!!!! Time has just gotten away from me....between Easter, work, and everyday "stuff", we have just been so busy.

Taylor continues to feel good and has tons of energy. She is very active and enjoying every moment of her "normal" life. She rides her bike, takes Harley for walks, and plays every chance she can. She loves picking up Savannah from school and LOVES being home with Courtney....both girls really love their time with Courtney.

We enjoyed Easter (see picture above). We went on an Easter Egg hunt and spend Easter Sunday with friends. The girls had a great time.

I had to go to California this week for work...hard to leave the girls but good to see everyone from work. The picture above is of Suzy Hochman who wrote Hearts Connected. I took the book out for her to sign for Taylor....thank you again Suzy....the book is our favorite!!!

We found out the best news last week. Taylor's Make-A-Wish trip to Disneyland has been scheduled. We are going May 2.....the girls are beyond excited and ask every day "when are we leaving!!!" They/We can't wait.....it is a much needed trip and I can't wait to see the girls with the Princesses!!!

Other than that...we are hanging in there. Taylor's next checkup at PCH is May 10th......

I will post again in a couple weeks.

GREAT NEWS.....Taylor's blood test came back clear today....yeah!!!

She had a hard time getting a blood draw today but was very brave!!

She goes back to the clinic again for her next monthly check up in May....another month of freedom!!

Happy Easter

Well, we have enjoyed another week at home. Both Taylor and Savannah have terrible coughs but seem to be getting a little better. They both went to the doctor and just have colds/coughs. I was really worried that Taylor would end up back in the hospital but she didn't

Sean and I celebrated our anniversary on Saturday. Grandma came over and Sean and I went for a long hike (see picture above). We did a 10.6 mile hike and enjoyed lunch after. It was great to get out for the entire day. Thank you so much Grandma!!!!

Taylor goes back to the clinic on Friday, April 2nd. This will be the first time that she will have to have a blood draw by getting a "poke". Now that her central line is out, her monthly blood draws will require a stick. We haven't told her yet...she is going to be really upset. If her blood work comes back "normal" we will be on our way back home. If her blood work would show and "blast (leukemia)" cells, they would have to do a bone marrow aspiration to see what is going on. I am already sick with worry about what Friday will bring. I think that we will now "live" in monthly increments. If things go well on Friday, we won't go back for another month....month to month. Please add Taylor into your prayers again......NED - No Evidence of Disease!!!!

Also, please say a special prayer for our friend, Kate McKrae. She is on her way to Houston to start radiation therapy for 6 week. Kate, Holly, and Aaron - our prayers are with you.....we love you!!!!

I will post again after our doctor appointment on Friday. Thank you in advance for your prayers!!

Love,

Kristen

Happy 70th Birthday to Papa (my dad - see above pictures!!). Papa and Grandma Renee were here for the weekend to celebrate his birthday. We had a great time and the girls were so excited to see Grandma Renee and Papa.

Today we all participated in the Kids Walk to Stomp Out Cancer at Chanen Beth Israel (the girls school). The walk is in honor of Rabbi Kahn's mother and there were tons of families out for the walk today. We did the walk with Papa, Grandma Renee, and the Stocker family and had a great time. It was great to see so many families out to support such a great cause.

We are all doing well. Taylor has a runny nose and bad cough but other than that is feeling well. She is loving not having her central line. She loves taking a "real bath". She loves being home and being a normal kid!!!

We go back to the clinic on April 2nd for a blood draw to make sure that her blood counts are all ok. They will also be looking for any blast or leukemia cells. Please pray they find none!!!

Our good friend Kate McRae goes in this week for a big test....please pray for a clean scan....she has been through so much lately.

Not much else going on....thank you again for all of your support.

I can't believe it has been one full week since we heard the great news that Taylor is in remission....I still wonder if I am dreaming.

The week brought many ups and downs. Taylor actually had her Broviac (central line) removed on Thursday. When I flushed her tubes, I noticed a very small hole in one of the tubes. This causes great concern because this puts Taylor at higher risk for infection. So.....she was taken in to surgery. She is now Broviac free and enjoyed her first real bath in 8 months this weekend. She and Savannah were in the bath until the water turned cold....they splashed and had the best time. So she is now "line free" and loving every minute of it!!!

Sean and I attended Elijah's funeral on Friday. It was a beautiful celebration of his life but heartbreaking. Elijah is truly in a better place but it just doesn't seem fair.....

So now that the words "remission" have been said and Taylor no longer has a central line there is so much to celebrate. It is what we have been praying/waiting for since June. Remission is a new found freedom and offers more of a "normal" life. But....as a parent, you cannot switch gears that easily. Taylor still has to have monthly blood draws, CT's, bone marrow aspirations, etc. Every time Taylor has a new bruise on her legs or stomach or complains that her legs hurt, my heart stops. Taylor is at such high risk of relapse that every day I wake up thinking, "is today the day??" I know faith and positive thinking are a must in our new cancer world but as a cancer parent, it is very easy to let your mind drift.....

My mind also wanders into what long term effects is Taylor going to experience from long term chemotherapy. When she was diagnosed, they went over numerous side effects of chemo...learning disabilities, heart problems, eye problems, her growth could be affected, infertility, and many more. Back when she first started chemo, I didn't have time to truly consider that although the chemo will hopefully "kill" the cancer, what will it also do to my 4 year old precious child.

So....do you see why...as a cancer parent, I struggle to fully celebrate the moment we hear "REMISSION?" The nagging question of "will she relapse" echoes in my brain every moment of every day. Please don't get me wrong.....I could not be more excited about remission....it is just very scary!!


I think that until I hear the word "cured" (which is roughly 10 years from now, IF Taylor doesn't relapse), I will not sleep soundly.

Please know that all of your well wishes, prayers, prayer chains, support, love, and generosity are never forgotten. We would not have made it through the past 8 months without all of the support we have received!!

Thank you also to all of the RN's, PCT's, and MD's at Phoenix Children's Hospital. You are all amazing. Thank you for loving Taylor so much!!

I will continue to provide updates every week or so....

My dear friend, Andrew Rubio, posted this on Taylor blog today as a comment. I wasn't sure if everyone was able to view the comments so thought I would re-post it:

Hi, this is Elijah's father wanting to thank everyone for your prayers and support.Meeting princess Taylor and her family has been a real blessing.In times like this we need to remember and take advantage of ever moment spent with loved ones.If you would like to read about our little angel and see a picture of him look in the Arizona Republic on Wednesday the March 10th,2010.We believe in the lords will,and calling Elijah to him was our babys'will.He is a loving and healing lord and he did exactly what we asked him to do.He healed elijah for eternity.Brandie and I thank you for your support and prayers.Will be keeping Taylor and her family in our prayers and have faith that little Taylor will not have to see the inside of a hospital for the rest of her life. God Bless everyone and share the love the lord showed you,EVERYDAY!!
March 8, 2010 8:36 AM

I never thought I would make this post but here goes:

Taylor had her bone marrow aspiration today and the results show that she is in REMISSION!!!!!

There is not much better news than that. I will post more in the next couple of days.....

Thank you all for your prayers!!!

Well...it has been a busy weekend. We had a garage sale on Saturday and the girls had a lemonade stand. The girls had a ton of fun and enjoyed passing out lemonade. Their theme was "Lemonade for Leukemia (thank you Courtney for making the sign!!)" They are putting some of their money in their savings account and sending some to Elijah's family. It was a great day....thank you to our many friends who stopped by!!

Today we had a birthday party for our good friend Remi....Happy Birthday Remi. The party was also to celebrate Taylor being home from the hospital. The party theme was a "Princess tea party". All the girls looked so cute in their fancy dresses. The tea party was adorable and the girls all had a GREAT time. Thank you so much to Keryn and Dave for opening their house for the party and sharing Remi's birthday party with Taylor....you are great friends and we love you!!!

Tomorrow is a big day....another bone marrow aspiration. Celebrating Taylor being home from the hospital today with her friends was bittersweet. If the results from this test do not bring good news, we will most likely be back in the hospital. Celebrating being home one day and having the test the next day is crazy.....my stomach is in knots!! With the recent passing of Elijah, I am reminded how horrible leukemia truly is. No child should have to go through this. I try hard to be positive and think healing thoughts but it is really hard. Tomorrow's test just has to bring good news.....

I will post when we know results. Please join us in prayer for Taylor, Elijah and all of the children battling cancer...it is a difficult journey.

Thank you all so much for your many texts, emails, and posts about Elijah. I have shared all of them with his parents and they are so touched. They asked me to thank all of you for thinking of their sweet Elijah.

Many of you have asked if there is a fund for Elijah. His parents have both been without jobs during this difficult time and have 4 other children at home. If you are interested in helping with funeral costs, checks and/or cards can be mailed to :

Andrew Rubio
6605 N. 55th Ave
Glendale, AZ 85301

You can also email Elijah's family, Andrew and Brandy, at abrubio7@cox.net

Thank you again for thinking of Elijah and his family.

It is with a very sad heart that I post that our dear friend Elijah Rubio has lost his fight with Leukemia. Please pray for his family.

Hello all - things are holding steady at the Souza house. We are all busy with our new schedules. I went back to work yesterday....totally overwhelmed but glad to be back. Taylor and Courtney (see above picture) are now picking Savannah up from school every day and are having a great time together. Courtney is amazing. It is such a great feeling for me to leave for work and know that Taylor is safe, loved, and having a great time. Savannah is also in love with Courtney. She stayed home from school on Monday only because she wanted to "play with Courtney!"

I have ended up at the pediatrician with Savannah a couple of times lately and we had to put her back on Nexium for Reflux. Savannah had reflux as a baby/toddler but had seemed to grow out of it and had gotten to be off of Nexium. Lately, she has been having alot of stomach pain and discomfort. Her pediatrician thinks it is most likely "stress induced reflux".....so she is back on medicine and seems to be feeling better. So sad that a 4 year old would be that "stressed!!"

Taylor has her next bone marrow aspiration on Monday. Each day of waiting brings more stress and as we get closer to Monday we will all be more anxious and stressed. I will post results as soon as we know something. Once again I would ask for continued prayers.....thank you so much!

A huge thank you to CBI and Rhonda Rush. CBI is the preschool where the girls have gone since 2007. Rhonda is a mom who has organized many fund raisers for us. Rhonda and CBI are now working with Suzy Hochman to promote the book sales of Hearts Connected. CBI and all of the families have been extremely supportive during this tough time....thank you so much.

Happy Birthday to Sophia, RN tomorrow. If you read this, Taylor loves and misses you!!!!

That is all for now...will post again when the test results come in.

Love,

Kristen

Because the last couple of days have been such a roller coaster for us....I forgot to post an update on my sweet Elijah. Elijah is a 3 yr. old little boy with Downs Syndrome and AML. Taylor and I were roommates with Elijah and his parents for a long time. During this time, we all became very close. Elijah is the sweetest little boy and his parents have provided much needed support and comfort to me during this incredible journey. I am deeply saddened to say that due to numerous complications from AML and bone marrow transplant, Elijah will be leaving the hospital and going home on hospice. The doctors have given Elijah only a couple of weeks. I went to PCH on Monday night and sat with Elijah and his mom, Brandy. They are praying for a miracle. Please include Elijah and his family in your prayers. Elijah, Brandy, Andrew, and family - we love you all so much and are praying for a miracle.

I just heard back from Taylor's primary oncologist and the cytogenetic testing from Mayo clinic has come back in and is showing "normal". This means that the higher level testing is showing that there are no leukemia cells at this point. Taylor will go back in on March 8th for another bone marrow aspiration. At that point, they are hoping that her percentage of immature/leukemia cells will have decreased and that the reason they were so high is because her body is still recovering. We are definitely not out of the woods yet but this is a huge piece of GREAT news!!! If her number of immature/leukemia cells would be the same or increase on March 8th then we will have to consider that something is going on and do more testing. But.....for the time being....we will celebrate this small victory. As always, I remind myself that my sweet daughter still has a very aggressive form of leukemia and she could relapse at any point...but until March 8th I am going to try to push this thought from my mind!!!!

Thank you all for the extra prayers!!!

Unfortunately, this is not the news I was expecting to post. I will keep this very short as I am having trouble even typing the words.

Taylor's bone marrow aspiration and biopsy came back with a very high percentage of leukemia cells/immature cells. To be considered in remission, you must have less than 5 percent blast/leukemia cells. Taylor's preliminary test shows greater than 19 percent blast cells. This is higher than it has ever been. The oncologist said that some of the cells are considered "immature" and might just need more time to recover but the chances of Taylor getting below 5 percent cells are very low. It would take a small miracle for this to happen. We will also get more results back next week that will tell us more. Taylor is also scheduled for another aspiration on March 3 to see if by any chance the number of blast cells have decreased.

I will post more as we know more. But for now....I don't have any answers as to what is the next step. We won't even discuss next steps with the oncology/transplant team until her next test on March 3rd.

I don't know what else to say.....

Happy Belated Valentine's Day to all of you. I meant to post this weekend but lost track of time. We are all doing well still settling back into being at home. We enjoyed a long Valentines weekend with tons of sweets and time together.

Taylor is doing really well. She is feeling better and her energy level is increasing. She had a friend from school over last week (see picture) and loved being a "kid" again. We had a BBQ at another friends house this past weekend and she was so excited to be out of her own house playing somewhere else. Her nanny, Courtney, started on Monday and she is loving every minute of her time with Courtney. Taylor and Savannah have both taken to Courtney really well. Savannah has been begging me to not go to school because she wants to stay home with Courtney instead!!! Courtney got to experience her first dressing change today....no fun!!! She is amazing with the girls. When I am back at work, Courtney will be with Taylor all morning while Savannah goes to school until 1:00. Courtney and Taylor will pick Savannah up and they will all be at home together until I get home from work. It should work out really well.

The big day is Friday. Taylor has her final bone marrow aspiration to determine if she is in remission (NED or No Evidence of Disease). I/we are all very nervous/anxious about this test. All we can do is pray at this point. We would ask that you all increase your prayers for Taylor over the next couple of days. We won't know the final results of the test for about a week. I will post as soon as we know!!!

Please also pray for our friend Kate. She is undergoing a stem cell transplant today.....she needs all of our prayers right now also!! Kate - we love you and are thinking of you!!!

Thank you in advance for your support and prayers for Friday!!!

XOXO

Kristen

TGIF... I hope you are all doing well. I apologize that is has been so long since I have posted. Thank you all for your emails and texts and I am sorry if I scared any of you. We are all doing fine. Things have just been so busy being back at home. I am trying to get organized again after living in the hospital for 7 months. We are all trying to readjust to being together and getting used to being a family.

Taylor is doing ok...she woke up very early this morning with a "barking" cough. I knew immediately that she had croup. I called the hospital because she was really having trouble with her breathing and they had me bring her in. The doctors verified that she does have croup. They gave her a large dose of steroids in her broviac today. She is feeling pretty crummy and complains of a sore throat. I sat with her tonight in the bathroom and steamed her for about 15 minutes.....I am hoping this helps her through the night. So.....it could be a long weekend.

The good news is that her counts have increased from our last visit but are still not high enough to do her final bone marrow aspiration. She is still showing signs of having immature cells and continues to be in recovery mode. They have tentatively scheduled her bone marrow aspiration for February 19th but will wait and see if her counts are better by then. So....for now she will continue to be very careful and have limited activity.

She continues to be very tired but enjoying every minute at home. We take Savannah to school every day and then come home and rest and play and pick Savannah back up at 1:00. The girls are still getting used to sharing again but are doing better. They are both seeing Psychologists and this is helping both of them.

So...for now we continue to wait and see.....the waiting continues to be so difficult but at least we are waiting at home!!!!

Please don't be concerned if I don't post for a week or so....I will post if something comes up and will try to post updates more often. Again, thank you for you prayers, concern, and support.

Have a great weekend.

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

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

Taylor seems to be feeling good, just very tired.

I will post again later this week or weekend.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So good to be home!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Off to bed....

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

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

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

Have a good night...

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

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

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

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

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

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

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

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

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

Nothing much has changed. Taylor spiked 2 fevers in the night, 1 fever during the day, continued with the diarrhea and vomited up her Tylenol. She did have energy to get dressed and walk to the bathroom today. She even let me paint her nails but was soon back in back asking for pain meds. She slept for a couple of hours. She was taken down for an abdominal and lung CT today. We didn't go down until late so we don't know the results. Her ANC did increase today but her WBC's are not increasing like they should. She tried to eat a few crackers and soup tonight but stopped because it was hurting her stomach too much. So...until I know more about the CT there is not much more to say.

We were both up every hour last night for different meds, vitals, etc. I am tired!!!

Unfortunately, today brought much of the same. Taylor continued to spike fevers , threw up, and had diarrhea all night. She got morphine and nausea medication throughout the night but could not sleep well. She just doesn't feel well.

She was in bed the entire day, watched TV and slept. She received another platelet transfusion because she did not receive any bump from the transfusion the day before. She refuses to walk even to the bathroom....she will only use the bathroom if I will carry her. She refuses to let the RN's or PCT's do any of her vital signs. She will only allow me to do.....she is just so done with this whole process. She had one of her favorite RN's today who offered to paint her nails while she watched TV and Taylor did not feel well enough to even do that.

About 5:30 Taylor's blood pressure dropped again. She had to have another bolus of fluid and was sent down for a Stat chest and abdominal Xray. We are waiting for the results of the Xray right now. Her blood pressure has come up a little but not where they would like the numbers to be. So...she will get blood pressures every hour tonight along with being hooked up to a oxygen saturation machine all night.....she is not very happy about this.

She will go down for another CT tomorrow to try to determine why she continues to retain fluid and have extreme belly pain.

I just don't know what to think anymore. Watching her in pain for the last 10 days is just too much to take. She did actually have counts today....instead of being at zero, she is at 11. I am hoping this number will continue to go up and she will feel better......

I wanted to post a picture from Saturday with Savannah and my great friend, Kim. Kim and her family took Sean and Savannah to the Fiesta Bowl parade. Savannah had a great day....thank you Kim!!!