Thursday, April 22, 2010

Update

So today is day +13. It will be two weeks tomorrow that Jaylee had her transplant. So far It has been okay. Not great, just okay. After having to shave her head things were looking up. She was happy and seemingly doing well. About three days after that we noticed she started drooling alot and she wouldn't close her mouth. The next morning after telling the doctors about the drooling they took a look in her mouth and discovered she had mouth sores under her tongue and in the back of her throat. From then on she started REALLY drooling and not only was it thick and sticky but it was bloody too. I am not going to lie... it was sad. She constantly had blood running down her chin and all we could do was try keeping it wiped up. At night was the worst. It would run down her cheeks and onto her pillow case and then get all over her face. It probably took me fifteen minutes each morning trying to get all the blood off. It was really hard to see. Luckily for Jaylee, the doctors had her pretty medicated. At first I was really worried to give her so many drugs but after seeing the actual sores in her mouth, they couldn't give them to her fast enough! They looked like blisters on the bottom of her tongue and it just broke my heart! As of now, she is doing a little better. She does not bleed as much and the sores are not as noticeable. I am just amazed at how strong Jaylee is! She is such a trooper. I cant even imagine having to go thru all this and not understand why you hurt so bad or feel this sick! Everyday I am amazed at how well she copes with everything! I am also AMAZED and GRATEFUL for Jeff. He has been my rock! Solid and true! I sometimes forget that it's not just me that gets affected by Jaylee hurting. He has been an amazing support for not only me but for Jaylee as well. I want to thank him for all he does for us and tell him how much I love him! I want to say thank you to everyone and their prayers for us. They help keep us going! Love you all!

Friday, April 16, 2010

This is Jaylee before and after we shaved her head. I think she looks like a completely different baby! My aunt Kathy gave her the doll and she LOVES it!!













Wednesday, April 14, 2010

A Hard Day

Well today is Day +6 and after a morning of constant hair clumps, we decided to shave Jaylee's head. We first noticed it this morning when we saw how much hair was on her pillow case. Then because Jaylee likes to play with her hair we saw that she was pulling clumps of it out and then itching her eyes with it, which then led to more itching. After the decision was made, I had a bit of a break down. It seemed like it was all crashing home to us just how sick she really is. Jeff took the initiative and started to shave her head first. About halfway thru, it really got to him and he started crying, which in turn made me cry even harder! Once I calmed down a bit, I took the opportunity to finish the job. It only took about ten minutes to get it all done and she did really good. She looks a little bit like a boy but is still the most BEAUTIFUL girl ever! Unfortunately for some reason the video camera did not record the process and so we don't have any video to keep! I am totally bummed about it too!! We DID keep all of her hair though! Anyway It was definitely a traumatic morning for us all! Love you all!

Tuesday, April 13, 2010


Here are a couple more from the transplant day!













New Update

This is Dr Meaker, the Bone Marrow specialist.
Joan and Betsy. Our nurses that day.


There it is!



Typical red cooler!



So its Day +5 and Jaylee is doing GREAT!! I think all of us, including the doctors are impressed with how well she is doing. Everyday we wake up thinking 'Okay this is it, today she is going to be sick' and then we look over to her crib and she is just smiling away! It's AMAZING!

Luckily the bad smell is gone. Thank goodness! She still has ALL of her hair, and still has somewhat of an appetite!
The pictures posted are from the day of the transplant!

Friday, April 9, 2010

THE BIG DAY!!

Well today was the day! Day 0! Jaylee received her Bone Marrow Transplant today. First they had about 12 nurses and the BMT Doc's come in and sing Happy BMT Birthday to Jaylee, which was really fun and they gave her "Birthday" presents. They then brought the Red Cooler in and pulled out the bag of bone marrow which looks just like a blood transfusion bag! The Transplant took about 45 min. So far she is doing great, the only bad thing is, the preservative they put in the bone marrow smells SO BAD! and it just radiates off of her body! The smell will last a couple of days so I hope I can get used to it! They believe she will start to get sick in the next couple of days so please keep her in your prayers! Love you all!

Thursday, April 8, 2010

Almost There!

Well its Day -1! Tomorrow is the transplant. So far Jaylee has been doing exceptionally well with the chemo!! She still has all her hair and she has only been fussy about twice in the last two days. We are so thankful for her doing well this week because we know it is going to be short lived. The doctors think that in the next couple of days she will start to feel a lot worse. We are excited to get this all over with and hope things keep going well. Love you all!

Sunday, April 4, 2010

Happy Easter!


We just wanted to say Happy Easter to everyone! We had a nice little surprise today for Easter, the Easter Bunny brought Jaylee a basket full of goodies. :-) When we asked the nurse who gave it to us, she told us that they had received over 1,000 Easter Basket donations from people this year even thought they only have about 400-500 patients! It brought tears to my eyes when I heard this. It continues to amaze me how caring and loving people are in these hard times!

Just a quick update, today is day -5 until transplant day and Jaylee is doing so good! They told us she probably wouldn't start feeling sick until a couple of days so things have been about the same. The only changes we have noticed is she has thrown up a couple of times a day and also her little finger tips are peeling, which I thought was kinda weird. As we get closer to the transplant our fears and excitement continue to grow. We love you all and hope you have a wonderful day with the people you love!

Friday, April 2, 2010

A Big Day!

Well today is Day -8 until the transplant, and today was Jaylee's first day of Chemo Therapy! We have had mixed feelings all week as we knew this day was coming. We were and still are terrified and relived at the same time. Its so hard to think that getting chemo would be a day to rejoice and yet be so miserable at the same time. We know this is one step closer to the end result, but it doesn't make it any easier. Our families have been such amazing support and thank everyone of them. We ask that you keep us in your prayer. We love you all!