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