Jade's Journey

June 29th, 2010 marked 7 months since Jade was diagnosed, but it marked a great leap in her treatment as well! She has now been in remission for 6 months which brings her 5 year survival rate up to a 60/40 chance rather than a 50/50 chance!

This past trip was really rough, but Jade toughed it out! She got to meet the real Spiderman!!! (The actual stunt man from the movie came for one of the kids Make a Wish.) Jade played a lot of basketball and on our way back she found one of the service dogs and attacked him in the hallway! (pictures below)

by Linden

Jade was released from the hospital on the 14th!!! Woohoo! She had a pretty good week. We had a few issues with her ankles acting up. We had x-rays done 4 weeks ago that came back with nothing, but we had an MRI done the day we left. (Jade’s first one and she did GREAT!) We waited all day and all night to get the MRI done and during that time Jade decided she would try to make water balloons to throw at Emil (the tech). When the water balloons didn’t pop Brooke (her nurse) decided it would be better to use syringes filled with water! We got the results back on the MRI last week and it showed that her marrow was slightly inflamed, but the doctors don’t think that it would cause as much pain as Jade has been having. So we are still trying to figure it out! Jade got to see some old friends and she met some new friends this week! She also got to see her favorite nurses!!! Her Aunt Susan came to visit and brought some fun little toys…one of which was an animal balloon making kit! We were pretty much scaring everyone because the balloons kept popping! Jade can now make a pretty awesome balloon dog! (See Below)

Today we went in to check her counts again because they were low on Friday and on Monday. Her hemoglobin is going back up on its own and so are her platelets! Her ANC was at 18,000 on Monday (from her neupogen shots) and it dropped to 1,020 today. Her immunoglobulin was really low so they had to give her an infusion of IVIG. This infuses infection-fighting antibodies to help her fight of infection. So far she has only had one side effect from it, nausea. We are hoping to make counts this upcoming Tuesday so that we can stay on track! This next trip will hopefully only be for 2 or 3 days, but last time she had this particular chemo it did not go so well! Crossing our fingers!!! We had a mini reunion at the clinic today…Jade got to see her BFFs Jack, Carson and Jordan! She was really happy to see them! She really misses her friends that have finished their treatments, but she is happy that they don’t have to go into the hospital anymore!

Oh one more thing…Jade came down stairs after taking her bath tonight and said “Mommy look at my hands!” Her hands were covered in hair! So we decided to shave it again. I gave her a mohawk as a joke and she really liked it, so she is now rocking a mohawk! She looks AWESOME! See the picture below!

I will let you know how things go next week!

Jade made counts this week, so we are back in the hospital for 5 days of chemo. Her hair is supposed to start falling out again with this round of chemo. It has grown in a lot over the past month, but Jade has decided that when we get home on Saturday she wants to shave her head again!

Also, as I told you all before Jade was interviewed by ABC 7 news last month. Well today she was all over TV on commercials for Trevor’s Treasures!!! It will be on tomorrow evening at 5:00pm! She is pretty excited about it!

Jade is doing well! Since she has been out she has been having lots of fun playing in the sprinkler and riding her bike up and down the driveway! We are waiting for the pool to warm up so that she can jump in! Jade found out today that her Grandpa Gene is in town from London and she gets to see him on Thursday! She is sooooo super excited about it!

We went into the hospital for another round of chemo last Monday and got out on Thursday. She was so happy to see all of her nurses while she was in the hospital! While we were in there Jade was able to meet Declan. (Declan’s Auntie Cathie used to work with me back at Richmond American Homes) He is an absolute sweetheart!

We went to the clinic today to get a spinal tap and to go back to the hospital for a week, but she didn’t make counts. Her ANC is only at 410. (which means her immune system is not good) It needs to be at 750 to be able to do the treatments. One good thing is her platelets are good and so is her hemoglobin, so she didn’t need any platelet or blood transfusions!  She was also able to see some of her friends at the clinic that she hasn’t seen in a while. We will be trying again next Monday…so cross your fingers!!! I will let you know how things go!

Last Monday Jade FINALLY made counts!!! Jade was yelling in the clinic saying “woohoo I get to go to the hospital!” Yes I know you all must be thinking what?! Why would a kid want to go to the hospital?! lol Well when we got there she jumped out of the car and started running through the parking garage with me chasing her because obviously the last thing we need is for her to get run over by a car!

The doctors had taken her off of her daily chemo (Gleevac) to try to help her counts come up. She was off it for two weeks and her hair started to come back!!! But it was not blonde…it is a dark brown! I told her she was going to look like Snow White with the dark hair and pale skin! Unfortunately, her hair will fall out again, but she is OK with it!

She had a very easy trip, no complications what so ever! The outside play room is now open, which is absolutely wonderful!!! Jade was able to get outside everyday to ride bikes and play basketball. I must say, she is one good bball player! She made about 8 shots into the 12ft. hoop! (Lets just hope she isn’t like me and get voted most likely to foul out of a game!) Jade made a new friend named Jordan she is 8 years old. Jade also got a wonderful surprise visit from her bff Lauren!! She was coming into the hospital for her radiation treatments. (Lauren is doing very well!)

On Friday Jade was lucky enough to build a bear all thanks to Trevor’s Treasures. Trevor is an 8 year old little boy that was diagnosed in 2007 with Hodgkins Lymphoma. He went into remission, then relapsed this past June, he is now back in remission and doing great! He started Trevor’s Treasures to brighten kids days while they are in the hospital. This trip he brought channel 7 news with him to video the event. There is going to be a news special sometime in May. (I will let you know once we figure out the exact date.) Jade and I were both interviewed on what it is like for her to have cancer and how it changes everything.

We went to the clinic today for a follow up visit. Everything seems to be good, her counts are still up! I had a conversation with the doctors in the beginning of last week because we are starting to notice that her short term memory is not all there. She has been having trouble remembering peoples names and is having trouble with her colors. At today’s appointment they referred us to a neuropsychologist for testing to see if it is something permanent or just (what the doctors call) chemo brain. The color issue could be an eye problem, so they are waiting to see what comes from the neuropsych testing. I will let you all know once we set the appointment!

The test results came back on her bone marrow extraction last week. It showed that she is still in remission and that the Philadelphia Chromosome is still gone!

Jade had another appointment today to check her counts to see if they were high enough to start her next round chemo. Unfortunately her counts weren’t high enough again. We will try again next Monday. If her counts aren’t high enough next week they will do another bone marrow extraction to make sure she is still in remission. (It will be 5 weeks past her original start date.) The doctors told us to keep her off her daily chemo for another week to try and help her counts get back to where they need to be. They seem pretty positive that her counts will be good to go next week. Crossing our fingers!!!

Other than her counts being too low she has been in very good spirits! She had a wonderful Easter and continues to say she “won” the Easter egg hunt, even though we keep telling her it wasn’t a competition!

For the past three weeks we have been bringing Jade into the clinic every 4 days to check her counts to start the next round of chemo. Unfortunately they (her counts) have not been cooperating with us! We are going to try again tomorrow (3/30). When we didn’t make the first scheduled start date we asked her doctor what this means. He said that he wasn’t too worried about it because we weren’t that far behind schedule and we should start to get concerned once we hit weeks 3 to 4 past the original start date. Tomorrow we hit the three week mark…we are crossing our fingers that her counts are high enough to start this round of chemo!!! If her counts aren’t high enough then we will be scheduling a bone marrow extraction to do testing because at this point it could be a sign that she is relapsing. As of last month when she had her last bone marrow extraction she was still in remission, but the doctors said that could change at any time.

Miss Jadey is trying to keep busy. She has been spending lots of time with her dog Tazzy. She really misses her teachers and her friends back at John B. Dey! She has been counting down the days until she can go back to school. Jade has also expanded her nail salon into a full service salon…she started shaving peoples heads so that they can be bald and beautiful like her! I will add pictures soon!

by Linden

Last Tuesday Jade took her test to get her white belt in Tae Kwon Do and she PASSED!!! She was really excited because she got to break a board with her foot!

Jade is currently in the hospital. She came in last Wednesday (Jan. 27th) and we were hoping to get her out by Saturday, but unfortunately she got a fever. We are now waiting for her counts to come back so we can break her out of here! She got to room with her buddy Lauren again. They had lots of fun painting lady bugs on their heads! Jade had 7 little ones and Lauren had one big one.

For some reason every time we come into the hospital it snows and Jade hasn’t been able to get out and play in it. So last night I decided to bring the snow to her! The nurses gave me a big bucket and I went out and got a bunch of snow! She made a little snow man with the help of some of the nurses! (Pictures below)

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