Jade's Journey

Little Miss Jadey Boo is HOME…just in time for her 6th Birthday/Christmas!!!

We have been waiting since Friday for her ANC (Absolute Neutrophil Count, which is the amount of good white blood cells that fight off infection) to go up and finally today she got to where she needs to be! She was half asleep when I told her and her eyes opened and she started smiling! So we had to pack up all the gifts that she has received from you all! (It was like packing a small apartment!!) When we finally made it out of there she made a grand exit on her new bike that she got from Santa today. She rode her bike out of the Hem/Onc unit and onto the elevator and out through the lobby with a very large and very amused audience!

While being home is exciting, Jadey’s little body still has a lot of work to do. She is very eager to see everyone, but unfortunately she is not able to have many visitors until her immune system gets built back up. She absolutely loves all of the cards, gifts, and reading all of the new comments on here! We would like to thank you all for all of your thoughts and prayers! Jade still has a long road ahead so please keep the thoughts and prayers coming!!!

Hope you all enjoy this Holiday Season!

Jade, do you believe all the snow we are getting? Crazy snow! I’ve taken a lot of photos. See if your Mom can show them to you on Facebook. I bet the view of the snow is amazing from the heliport hallway. Let me know if the birds are still in the air vent watching the game. Love you, Jade!

Hi, I’m back!!  On Tuesday I got to SEE JADE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  I was sooooooooooooooooooooooooooooooooooo happy to see her.  And I loved her hair pink.  She looked like a Rock Star.  She was also happy to see me.  She gave me a brown bear with a red shirt, red & black scarf, and a red and black hat.  So thats all I have for today.

So over the past couple of days I have been attempting to dye Jade’s hair to the exact shade of pink that she wanted it to be and today it finally worked….all thanks to Kim!!! Jade is very excited about it and now she wants all her clothes to match her hair! See pictures below…

Jade is very much in the holiday spirit, especially after watching the movie “Elf” 8 million times in the past two weeks! The other day she was in a hallway called Andy’s Helipad and wouldn’t let people through to the other side until they sang a Christmas song! Some sang for her others said they didn’t know any and of course Jade says “yeah you do! Jingle bells, Jingle Bells, Jingle all the way….” and made them sing along! She is such a nut!

Update on how she’s doing:

They started her on the new medication for the Philadelphia chromosome this past Friday. She hasn’t really had any side effects from it other than being a little sluggish. They have decided to skip the spinal tap and bone marrow extraction for this week because last weeks results were good, but she is still on schedule to have the 2 rounds of chemo tomorrow.

Her hair is starting to slowly fall out, but she seems to be OK with it all now. She had some concerns about it because (in her words) “boys are allowed to have bald heads and girls aren’t supposed to”. She met a ten year old little girl this past week that had a wig on and she pulled it off just to show Jade that it was OK! The kids she has met here have been really great!

So today Miss Jadey Boo and I walked an entire mile without stopping!! (Which is a big accomplishment for both of us!!!) She has also made some pretty awesome friends!

Yesterdays spinal tap/chemo to the spinal fluid and bone marrow extraction went smoothly! I really do believe that your mood (good or bad) when you are put under anesthesia for a procedure will determine the mood you will have when you wake up from it! Jade’s Doctor (Dr. Futterman aka Dr. Sponge Bob Square Pants, he was her Intensivist during the procedure, who just happened to be the brother of one of my co-workers from Keller Williams in Virginia Beach…such a small world!) had her singing the theme to Sponge Bob Square Pants and had her in such a good mood before she “went to sleep”! When she woke up she was as happy as could be! (which was not the case the past two times she went under anesthesia)

We did get some news today about her bone marrow results…

Good News: She is responding well to the chemo! Her bone marrow is only 4% blasted with Leukemia, which makes her an M1 rapid early responder.

Not So Good News: We found out that the chemistry make up of her Leukemia Cells are Philadelphia Positive Chromosome andbecause of this, the result of her being an M1 rapid early responder is minute to an extent, as it is helping with the ”normal” part of T-Cell ALL, but not the Philadelphia Positive Chromosome. This particular chromosome is normally only found in adults with CLL (Chronic Lymphoblastic Leukemia). To give you a little background…There are approximately 2,500 diagnosed cases of T-Cell ALL (Acute Lymphoblastic Leukemia) in a year. Out of those cases approximately 1% are also diagnosed with the Philadelphia Positive Chromosome.

What this means for Jade: It’s going to be a much tougher road for her than we originally anticipated. The Induction Phase (which she is in right now) will stay the same. This Phase will end around the 2nd or 3rd of January. After that the doctors at Children’s Hospital will be changing her Protocol (this is the course of treatment for her). The new Protocol is going to be a lot more intense with higher levels of chemotherapy and medicines. She will be in and out of the hospital over the next six months, but more so in than out. Depending on how she does over the next 2 weeks we may have the possibility of bringing her home for her Birthday/Christmas, which would be the greatest gift in the world!

She is in pretty good spirits and has a new favorite book called “Oncology, Stupology….I want to go Home!” It is an awesome book that was written by a 10 year old that was diagnosed with Leukemia. The book (as you can tell by the title) is about how kids don’t really care about “Oncology, Stupology” and it expresses their exact emotions about being diagnosed with cancer and everything that goes along with it. So needless to say Jade’s new favorite saying is “stupology, stupology…I want to go home!” (and yes, according to her it is stupology, stupology!)

Also, several people have asked me where they can send cards and such to Jade, if you happen to be wondering as well please feel free to email me to get the address.

Jade, it was great spending so much time with you today. We’ll read the rest of the Olivia books and Panda Cake next time. I’m glad the other kids on the floor were playing in the hallway today. I thought it was sweet that Carson brought you lotion for your nail salon and that you got to play Cars Bingo and Legos with Riley. Riley and Carson are great kids and I’m glad you had fun together. OH, almost forgot, a big WOW for walking 21 laps that equals a mile around the floor today with your Mom. I’m proud of you. XOXOXO Grandma

Today was quite the busy day for Miss Jade! She had a strong chemo treatment today called PEGaspargase this morning and thanks to the people over at Roche Laboratories, Inc. for making Kytril (<~ her anti-nausea medicine), she has yet to get sick to her stomach!!! She had her nail shop open today and did a couple of peoples nails. Jade also made some new friends! Oh and as of last night she is no longer a blonde…She now has PINK hair!!! All of the kids thought it was pretty cool All in all it was a pretty good day!!

Wednesday she will be having more chemo to her entire body, another spinal tap as well as more chemo to her spinal fluid. She is also going to have another bone marrow extraction and we should be getting the slides back from last Wednesdays bone marrow tests.

I will be posting pictures tomorrow showing Jades new hair do!!!

Jade, I’m glad you enjoyed watching Annie again and were singing & dancing. Also heard you are winning each time you play the I Spy game. Go, Jade!

For those in the DC area, Caitlin is having a fundraising happy hour Tuesday, December 8th, downtown at Masa 14 from 5 to 7:30 (1825 14th Street NW) for Team in Training. Come on out for some tapas, free wine and beer, and door prizes, and support a good cause in the process! Invite as many people as you’d like as we have the whole restaurant reserved, but please RSVP to liz@lorigrahamdesign.com ASAP so we can make sure we are well stocked.

Jade, I hope you enjoyed watching the snow from your window yesterday. Wesley and his family made a snowman and I will show you a photo of it when I come visit today. XOXOXOX Grandma