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....