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.