Jade's Journey

Sorry it has been so long since the last update, things have been a little hectic!

A little bit about our last trip to the hospital….

Jade did pretty well on the new medicines, but unfortunately we had to find out the hard way that she would have a bad reaction to one of the generic versions of the chemo called Ifosfamide. On Friday (Jan 8th) she woke up during the night and was having uncontrollable movement in her jaw, this is called dystonia, she then proceeded to have seizure like symptoms through the rest of the night. Apparently the dystonia is common on the generic version of this chemo, but the seizure reactions are rare. The doctors switched her to the brand name version (Ifex) the next go around and she was fine.

Quick rant about insurance companies…

I understand that you are trying to “save” money, but if there is proof that a child is more likely to have a reaction to a generic version than on a brand name version why would you ever make them be a guinea pig to prove that they need the name brand?! Aren’t they going through enough as it is?!?! OK, enough about that.

Last hospital stay continued….

She then also got a fever which made her have to stay an extra day in the hospital. Jade got to go home on Tuesday afternoon. We then had to return to the hospital the next morning for a round of chemo to her spinal fluid, but she got to leave right after. Little miss Jade’s attitude has held up well, despite everything that has been going on! Jade and her friend Lauren got to be roomies one night because the hem/onc unit was full. They both had received make up kits from Child Life and had a little make up party She has been playing a lot of Uno and Candy Land. Oh and lots of arts and crafts too! There are some pictures below of her last stay!

Since the last Hospital stay…

We had a follow up doctors appointment at the Children’s Hospital Clinic on Friday (Jan. 12th). When they took her blood work her counts came back very low. Her immune system had been knocked out by the chemo (which is expected). We ended up having to come back to the hospital right after the doctors appointment to get a blood and platelet transfusion. She was only supposed to be in there for a few hours, but by the time we got to the hospital Jade’s little body decided it wanted to have a fever! So we are now in here for a little bit! The doctors are saying that all of her blood work is coming back negative, so they are thinking it is a neutropenic fever. (neutropenic ~ a low amount of neutrophils, which are white blood cells that can fight off infection.) We are now just waiting to get her ANC count to come up and her fever to go away for her to be able to go home again!

What happens next…

Jade will be starting a new round of medicines on January 27th, she will be in the hospital for about 4 to 5 days during that stay.

by Linden

Have not talked to you since I last saw you just before I flew back to England.  I do keep an eye on you from afar, tracking your progress through your Dad.  Actually, he is a hard man to find on the phone, probably because I keep bugging him to find out how you are doing.  Tomorrow I will call Brandy and bug her!  But still, it is not the same as being able to see you in person.  I miss you!  So what have you been up to?  Are you an expert at all those video games yet?  Bet you are.  Have you been back to the karate studio?  I took karate for a while.  So did your Dad.  He was pretty good as a matter of fact.  So was your Uncle Corey.  How are your sisters doing?  Tell them I miss them too!  It has snowed in England almost every day since I have been back.  But even with it snowing every day for a couple of weeks now, there is still less snow than we got in one day in Virginia.  Colder here too.  Freezing in fact.  Well, it’s 8:30 in the evening here which makes it 3:30 in your afternoon.  I am already done with dinner.  And by the way, I cooked it myself which means it was not very good.  Shish is the cook in the family.  I can barely boil water.  Oops!  I hit the wrong button, Jadie Poo, and this may have been put wherever it goes so you can read it before I was finished!  So before I goof again, I better close off this conversation.  But there will be more notes from me while I am here because I think about you all the time. You hang in there and remember that I love you bunches.  Grandpa Gene

Little Miss Princess is in remission!!!

What that means:

After doing the last bone marrow extraction, spinal tap, and regular blood counts the doctors were unable to find leukemia cells which includes the Philadelphia Chromosome. It does not necessarily mean that the leukemia is completely gone. It means that the treatment protocol that she is on is working, so we will continue on the path that the doctors feel is the best route to take to keep her in remission. The doctor said that the next 9 months are going to be rough, but we’re hoping that with Jade’s attitude she will be able to deal with it all! We now just have to make sure she doesn’t get sick and hope and pray that medicines (old and new) continue to work and that she doesn’t relapse!!!

How Jade is doing:

Jade is now on two new types of chemo and a new medicine called Mesna to protect her bladder from one of the chemo’s side affects. Unfortunately for the next week she has to wake up every two hours during the night to go to the bathroom…needless to say she is tired!! Other than that she is doing pretty well. Yesterday she got to visit with two of the therapy dogs (one was a miniature dachshund named Moxie and the other a yellow lab that she named Marley) which made her extremely happy! When we were in the hospital before she wasn’t able to visit with them because her counts were too low. She got another visit from another therapy dog today named Ford. (Pictures below…) Jade made him fall asleep in her bed by petting his ear. She’s been walking a lot with one of her favorite friends, Lauren, that she met in the hospital on her first visit. Jade has also reopened her nail salon and has had a few customers so far, including some of the other kids in the Hem/Onc unit!

Jade had an absolutely wonderful birthday/Christmas! She was able to spend Christmas with family and even got to see some of her favorite cousins (Max and Jackson) that live out of town. Jade got 2 Wii’s (one for her dad’s house and one for our house), a DSI with lots of games and a ton of other cool toys and games. She did however bring up the fact that Santa did not get the TV for her room that she had asked him for. We tried to explain to her that she doesn’t always get everything on her wish list to Santa, but she did not agree with us! She is definitely starting to get back to her normal self now that she is coming of prednisone!! (Yesterday was her last day on it…woohoo!!!) The doctors warn you about the mood swings, but my goodness!

Although Jade was able to get out of the hospital, she then realized she was pretty much cooped up in the house. Needless to say all the munchkins were getting a little stir crazy! Jade’s step-mom Brandy was trying to figure out something that they could do out of the house without there being a lot of people around (because of Jade’s immune system). She called a karate place in Gainesville and explained what was going on with Jade. They closed the place down for an hour so that Jade, Hailey (big sister),and Devan (little step sister) could have a private karate lesson! They had a lot of fun!

We are now finished with the 1st Induction Phase and will find out on Tuesday if she has gone into remission. The goal is to have her in remission by the end of the induction phase…we are crossing our fingers! She will be readmitted to the hospital on Tuesday and will be there for about a week.  The doctors are starting her on all new types of chemo, so they want her to be in the hospital for observation to make sure she does not have any bad reactions to the new medicines.

As soon as I get a chance to get on the computer again I will let you all know if she has gone into remission! Hope you all had a wonderful Holiday!

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