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!