Jade's Journey

Sorry that it has been so long since the last post! Jade has been doing well…minus her counts being low for the past three weeks. They took her off of chemo for a week to try to get her counts to come up, but it didn’t work as well as they had hoped. They restarted her chemo anyway because of her extreme high risk status they didn’t want her to be off chemo for too long. She restarted at 50% dosage. This past Monday (3/12) Jade started round 10 of 12 (each round is 2 months) even though her counts still weren’t the best. As of this past Monday Jade officially had 6 months left of treatment….we are officially counting down to the end!!!! Woohoo!!!

The school finally allowed Jade to have a partial home bound program (which was great seeing as she was out for three weeks straight!) Jade’s new homebound teacher is Mrs. Costello, she is fantastic!!! Jade loves her and I couldn’t be more thrilled with her! Jade has been doing so much better with her reading since Mrs. Costello started coming over! However, the school is still being ______ <— (fill in the bad word here). They are officially threatening to hold her back because of her reading level and are still giving us a hard time for the fact that she isn’t there all of the time (even though she is on homebound). They sent me a letter this past week asking for doctor’s notes for every day she has been absent, mind you they have a letter and treatment plan on file stating that she has CANCER! Are you kidding me?! I am so over them!! Ok, done with the rant

See updated pictures below

It has been now been two years since Jade was diagnosed with cancer. She has been doing well with few minor set backs of low counts and fevers. She had a bone marrow extraction done a few weeks ago and all results came back clear!!!! She loves going to school and has been learning a lot. She has missed quit a bit of school due to low counts and fevers which has put a major strain on our relationship with the school because they feel she should be there no matter what is going on…that’s a post for another time.

On to happier topics…

Tis the Season…

Jade’s Nana Amy is collecting toys to give to Inova Fairfax Children’s Hospital for them to hand out to all of the kids that have to spend their holiday in the hospital. Jade received some amazing gifts while she was in the hospital and even received a bike from Santa the day she was released from her initial 30 day stay in the hospital. All of these gift are donated by people just like you all. So I ask that in honor of Jade you please help make this toy drive an amazing one!!!! Please also remember that some of these children are teenagers, which tend to get overlooked because everyone brings in gifts for smaller children!

Please Visit Amy Bates at the Macy’s (2) in Fair Oaks Mall at the Origins Make-up Counter to donate your gifts to the kids!

(The Macy’s she is in is the old Hecht’s turned Macy’s)

Also remember to bring in your Christmas Lists for Santa! For every Christmas list that Macy’s receives they will donate $1.00 to the Make-A-Wish Foundation to help grant wishes for kids like Jade!!!

♥ Jade’s 2nd Grade School Picture ♥

Jade has started second grade…and she’s actually going to school!!! I was able to get her placed into one of her homebound teachers from last years class. Her teacher got married over the summer so she is now known as Mrs. Hintosh…this took a while for Jade to get the hang of seeing as she always called her Ms. Allison!! Jade has had to miss a few half days and one full day due to doctors appointments and one day of not feeling well. She has made lots of new friends as well!!!

Jade came home the other day and said a kid asked her if she drank the stuff that makes your hair fall out, I asked her what that is and she said she didn’t know, I then asked her if she told them she had cancer and she told me that she told them she just decided to cut her hair short, I of course asked why and she said its just easier to explain it…they won’t understand what I’m talking about! She is just too darn smart for her own good!

Jade received a CT scan of her lungs at the hospital last Tuesday and the results came back showing significant improvement, however she still has the fungal pneumonia. They are going to keep her on the anitfungal medication and have also put her on azithromycin to help with the pneumonia and her horrible cough that won’t seem to go away. We also had to go to her ENT (ear, nose and throat) doctor on Friday because she had been bleeding out of her right ear for about a week and couldn’t hear anything. They gave her drops to put in and so far they are helping, but we still don’t know what caused it. (Just in case I didn’t inform you Jade had tubes put in her ears before she left the hospital when she went in because of the pneumonia)

Below are some updated pictures of miss Jade…look at all of her hair!!!

In a few days (August 18th, 2010) it will mark the day that Jade lost her first friend to cancer. Her sweet little buddy Declan Black Carmical. He didn’t make it to see his first birthday…all because of this horrible illness that doesn’t have a cure! Words cannot express the loss tha our family felt, let alone the Carmical Family! Since Declan past away his family (that is amazingly strong) has started a foundation in honor of Declan, Journey 4 a Cure. The foundation is geared toward helping families dealing with cancer and helping to fund cancer research! (Do what you can to spread the word about their foundation….www.Journey4aCure.com)

Since Declan passed away Jade has had many more close friends turn into angels. She asked me a few months ago why all of her friends are dying. As a mother it breaks my heart, what am I supposed to say?! I had to explain to her that because most of her friends have an illness that there isn’t a cure for some of them might not be able to fight it and at the same time I have to reassure her that she’ll will be ok because I don’t ever want her to think that she could be next. Otherwise everything that she is going through and fighting for will end up meaning nothing to her. No one should ever have to have this conversation with their child!!!

Jade’s last hospital stay was one of the most scariest things that has happened since her diagnosis! To see your child sitting there and watching her lips, hand and toes turning blue because she can’t get enough oxygen into her body is absolutely horrible! The doctors almost sent us into the PICU (Pediatric Intensive Care Unit) on more than one occasion because of her oxygen levels and the only reason they didn’t is because they knew that if they did her spirits would plummet and she would get worse.

Jade was able to restart chemo on the 27th of July as they were concerned with the fact that she had not been able to be on it for almost 2 weeks. We have follow up appointments for the ophthalmologist (in about a week) and for her CT Scan (in another 2 weeks). We are not sure how her pneumonia is doing as of now as we have to wait for her next CT Scan. Her cough has come back with full force in the past few days, so we are going to check on this tomorrow during her appointment for her count check. (Hoping that everything is ok!!!)

On a happier note….We are super excited for her appointment tomorrow because we get to see little Mr. Aiden who just got back from Boston after finishing his 6 weeks of proton radiation therapy!!! We are so happy that he is so close to being done with all of his treatments!!!! (This is what we are fighting for EVERYDAY!!!!!!)

As some of you may already know Jade went into the hospital on Wednesday last week. It started out with a fever, double ear infection and a zero ANC. While we were waiting for a room at the hospital to become available she started having severe pain in her side. The P.A. ordered an x-ray once we got to the hospital. It showed that she had pneumonia on a small portion of her left lung.

By Friday it had spread to majority of her left lung so Dr. Chang ordered a CT scan. The scan reveled that there were nodules all over her lungs (both left and right). They then scheduled a CT guided biopsy of her right lung where the largest nodule was located. They placed a needle through two of her ribs on her upper back into her lung. Once they pulled out the cells from the nodule they did another CT scan which should a small pneumothorax. (This is an air bubble that was located in between her lung and rib cage.) They monitored her for about two hours after to make sure the pneumothorax didn’t grow and collapse her lung. After the 2 hours was up they took an x-ray and it showed that the pneumothorax was absorbed into her lung.

Jade is feeling much better, but is still coughing up blood The doctors are hoping to start weening her off of some of the antibiotics today. She is also finally allowed to get out of the room and walk around. She is super excited about this because her buddy Jack is here, a few rooms away! According to the doctor it looks like we will be here at least through the end of the week…

We went in to the clinic today for a count check…as I previously stated the doctors want her ANC to stay between 750 and 1500 for the duration of her maintenance phase. Her ANC today was 6,140. As most of the we would be excited to see this kind of ANC, right now we are trying to determine why they are so high. With her counts being this high it could be a residual effect of being on steroids last week or it could mean that the chemo dose she is currently on (100% dosage) isn’t working well enough. Dr. Lawlor upped her dose of 6-MP (Chemo) adding 1/2 pill to Fridays. We are going back early than scheduled (next Friday) to get another count check. If her counts are still high we can rule out the residual effect of the steroids. If this is the case they will do a metabolism check on her to see if the chemo isn’t staying in her system long enough to work properly and they will up her 6-MP and Methotrexate doses to 125%. Dr. Lawlor used the perfect word to describe Jade today…the anomaly, as most children have to have their doses reduced to about 50% because their ANC keeps getting pummeled! I will keep you all posted as things progress…

Jade officially started her “easy” maintenance phase on June 6th!!! So far so good! She is super excited that her hair will start growing back permanently now We are now on a schedule to go back to the clinic every two weeks from now on. It has been a nice break!!!

I have a small favor to ask from all of you that have facebook! Our dear friends the Carmical’s started Journey 4 A Cure in honor of their sweet baby Declan who passed away last year. Right now they have a HUGE opportunity to win $250,000 to give towards Childhood Cancer Research!!!!!!! It is a very simple task that I ask of you all, click on the link below. It will request that you click the the login button for facebook. Once you do that click the “Like” button for Vivint. Then you can go back to the link and vote for Journey 4 a cure. You can vote every day from now until August 27th. If we hit the #1 spot by the end of this Journey 4 A Cure will receive $250,000 for cancer research!!!!!

http://www.vivint.com/givesbackproject

Jade finished her last week long chemo this past Friday!!!! It is crazy to think that she has been in this for over a year and a half! Next month she will move into her “easy” maintenance phase which last for another year. During the next year Jade will receive 1 chemo push a month at the clinic and take chemo by mouth every day at home. We will have periodic count checks each month and spinal taps and bone marrow extractions every few months. While all of this sounds fantastic we still are anticipating a lot of ups and downs when it comes to her counts. We know many families in maintenance right now and most of them are still struggling with counts dropping and having to reduce the dosages of chemo and then trying to build the dosages back up again. As we all know every kid is different so we obviously are hoping for the best and easiest route!

As things get easier ones mind can’t help but think to the future and what might happen. Is this going to be it? What if it comes back? What are our options? There are not many children out there that have what Jade has, so I don’t have a lot of comfort with knowing people that are still doing well after this current treatment she is on. So I have been doing a lot of research!!! With Jade’s specific Leukemia it’s complicated and in a “normal” case of relapse we would plan on doing a bone marrow or stem cell transplant, but with Jade’s Philadelphia Chromosome + T-Cell ALL she would have to do another round of a 2 1/2 year treatment. She would not be allowed to redo her treatment she did this time. So we come to our only current option…Novartis the company that makes Gleevec (the “silver bullet” chemo for PH+ patients) has come up with a new drug called Nilotinib it is for patients that either relapsed after treatment or never made it through the first treatments without relapsing, but it is not FDA approved in children yet. They just started a clinical trial in January of this year (2011). Currently there are only 24 children from around the world enrolled in this study! That is it…24!

Now that I’ve gone on and on I will come to my point…WE NEED HELP!!! We need help in research, with funding of this research and need a push in the drug companies to get things moving! Everyone whether they think they can or they can’t CAN help in some way! Whether it be holding a bake sale, a fun run/walk, or just donating your time at a local hospital. Many families that have gone through this have started foundations in honor of children that they have lost and ones that are still fighting the fight! Below I have posted links to their websites, feel free to take a look at some of the wonderful things these families are doing…but first I need for you all to reach out to everyone you know for a family that needs help!

Jade’s friend Aiden and his family are going up to Boston in mid June for 6 to 8 weeks for proton radiation therapy and they need somewhere to stay during their trip as it is all out patient treatments!!! Aiden doesn’t have an immune system so we are looking for something like a corporate apartment or someones vacation home that can be donated for 6 to 8 weeks. Please let me know if you have or know anyone that has this type of accommodation! Thanks so much in advance!!!!

www.Journey4aCure.org

(This was founded by the Carmical’s after they lost Sweet baby Declan to AT/RT a rare form of brain cancer)

www.TrevorsTreasures.org

(Trevor wanted to help children battling cancer as he went through it (and still is after many relapses of Neuroblastoma))

www.BlairFoundation.org

(This was set up by Catherine’s parents after she recently lost her long battle with Neuroblastoma)

www.TracysKids.org

(This foundation helps kids deal with all things that go with cancer through Art Therapy)

www.LifeWithCancer.org

(Known to us as Growing Hope helps kids with cancer with fun activities)

www.dccandlelighters.org

(They assist families with children of cancer in the DC Metro area)

All of these are non-profit organizations that have had an impact on us at some point in time throughout our journey!

I will end with a few pictures of Jadey Boo…. Jade and Aiden playing at the clinic

Jade and the magician…she loves magic tricks!

Playing basketball in the outdoor playroom at the hospital.

by Linden

We made it into the hospital on Wednesday!!! She didn’t make counts, but Dr. Lawlor decided to go ahead and get it over with! She had a rough start with the spinal tap and bone marrow extraction, but once we got to the hospital she perked up. She finished her methotrexate (chemo) last night and we are now waiting for the level of methotrexate to get down to .1 or below so we can go home!

So Jade’s last scheduled hospital chemo was supposed to start today…key word ’supposed’! We went in to the clinic for her the usual spinal tap and bone marrow extraction, but unfortunately her ANC just wasn’t ready yet. It had dropped down to 610 and we need it to be at 750 in order to start chemo. On the bright side Jade got to spend most of the day outside riding her motorized scooter, her jeep, and her roller blades (obviously her platelets are good!) We also had a trip to the park, but had to cut it short because some other kids showed up. Luckily we live across the street from the playground so its easy to come and go.

We are going to try again on Wednesday….I’ll let you all know what happens…

COUNTS UP! COUNTS UP! COUNTS UP! <~~From Jade