Monday, June 25, 2012

Day + 12 = Getting Closer!

It has been a nice and happily uneventful weekend.... and then Monday hit.  We still aren't finished.  Today, Kayla had a very full schedule, but mostly we waited anxiously to see where her counts were at. You just never know.  Sure enough, Kayla is at 700 (and climbing), but she would again need blood. This is the first time she has needed blood this many times. I guess we can just account for it being from the accumulation of treatments. SO glad it was the last one! Hopefully this will be the last time she needs blood as well.  Of course the Med Room was crazy. We knew it would be a long wait before they had any blood products ready for us so we opted to go home, get our stinky girl bathed and her dressing changed while we waited for the Med Room to call us. After 3 hours, we called them to see how it was looking. (Glad we didn't wait around!) They said that a lot of sick kids came in and that took precedence so they had to reorder.

Finally, just after 6:00pm, we got the call that they were ready for Kayla. Denny opted to take Kayla in because it was going to be so late when they finished. Unfortunately, when they got there, they STILL weren't ready. They didn't start until about 7:15 pm. Usually blood takes two hours depending on how much is in each bag. So, I figured they won't stroll in through the door until close to 9:30pm. That's a 13+ hour day for our lil' girl!

This week is going to be pretty hectic. Luckily tomorrow we will get a slight break after today. Kayla has Camp at 9:00 (which is through the school) and just her GCSF in the Med Room at 10:30.  (so, they will start at 11:30 the way they have been moving lately!)  The poor girl is going to need the break. Wednesday, things speed back up. She has an MRI of the Brain scheduled at 7:45am, Camp, School, GCSF, Audiology Evaluation followed by a photo shoot. This will be a fun one! Kayla will be doing some pictures with Michaela to show off the school program at St. Jude! We have been SO incredibly grateful to this program for keeping Kayla on track. We feel very confident that she will be ready for 3rd grade. (honestly... not like I'm that concerned) Kayla is such a people pleaser, especially when it comes to her teachers. She will have no problem getting where she needs to be if she isn't already.  Thursday is busy-busy. Friday we start at 6:45 am for an MRI of the spine. We are not expecting any change. Just protocol. Still, feel free to throw those positive prayers, thoughts and vibes our way especially on Wednesday and Friday! They have been really helping so far!  Kayla will have her counts re-evaluated on Wednesday. If they are over 2,000 they will be re-checked on Thursday to eliminate GCSF!!! It might take until Thursday though. We are extremely confident that this weekend she should be free from those LONG med-room appointments and B Clinic! HOORAY!!! We can't wait to be back into the wonderful hands of Dr. Gajjar. We have missed the team there. Team being the key word. We can't wait for our no-nonsense doctor who will tell it like it is and whose opinion I trust more then any other!

Our friend Connor (remember, he is a week ahead of Kayla in treatment on the same protocol?) just got some great news today! First the really great news! His MRI has shown that his there is no new growth and some of his tumors have shrunk! His Spinal Fluid has also come back NED (no evidence of disease)!!! They have decided to pull his central line as well. This is a HUGE celebration. Originally they had thought they would need to keep it in, so you can imagine the immediate relief this shows this wonderful family. Also, he is off of TPN officially now! So, they are packing and could go home as soon as next week. Just incredible. Again, bitter sweet. We will miss them! We have stopped giving Kayla lipids (the fat/calories that go along with TPN) So now, she will have to really eat to keep the beautiful weight on her tiny body.  She asked for Mac N Cheese for dinner... that's a start! Now, if only we could get her to put more then 4 bites in her belly before feeling stuffed. We will get there!

We are packing. We are getting ready for the things to come with E Clinic. No more TPN and finally Kayla's central line being removed. This signifies so much. Not only the daily care it requires, but the assumption that they will not be needing to access it any time soon (or ever!) We go back to the needle pokes for check-ups which Kayla says are no big deal at all. She laughs at those now. So do I for that matter. I laugh at so much. Ear infections. Colds. Flu's. Lice. Tubes. Adenoids being removed. Sedation. I laugh at it all. It's NOTHING. It's a walk in the park. A day off. No, it's a vacation!

Meanwhile, at school..... Anthony made friends with some pretty Colombian girls that just arrived at St. Jude for their little boy/nephew's Leukemia treatment. They LOVED Anthony and he was NOT shy.  He had just met these girls. I'm not sure why it still surprises me how outgoing he is.  Aj had the girl on the right cover his eyes while he did a puzzle and then he covered hers. Ahhhh. This boy is too much! Watch out Kindergarten. Here comes Anthony!!!!!!

 "OK, your turn!" They loved him. He especially LOVED them when they said "Good-Bye Hulk" in that cute accent when they left. (yes, that's his new name this week)


  1. So true!!!

    "I laugh at so much. Ear infections. Colds. Flu's. Lice. Tubes. Adnoids being removed. Sedation. I laugh at it all. It's NOTHING. It's a walk in the park. A day off. No, it's a vacation!"

    1. So true, Annie and Allie! Yup, it sure is!
      Keeping all in our thoughts and prayers as you go through these final stages of St. Jude care.

  2. No TPN and no line.....awesome. Can't wait to see a photo of your family on your flight home!!!!! You guys are amazing!!

  3. So glad that things are going as well as can be expected! Our thoughts are with you still even through your last days at St. Jude! Loved the pic of Kayla! So brave and beautiful!

  4. Still praying for your amazing & beautiful super girl!! Love the picture as it shows the strength, courage & bravery of this little, but quite extraordinary girl! Of course, we will be praying as always! And about AJ, he is one adorable little guy and also quite the charmer! Soooo cute!

  5. So happy for you guys! (and for little Connor!) Prayers and strength to you, as always. ~Jill and Roddy