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What a week..and it’s only Tuesday!

Jan 18

So yesterday Miss Jade started another round of chemo. This round so far has been a bit hectic! We started out at the hospital because the clinic was closed for MLK Day. Jade got to start her day out by seeing her most favorite intensivist, Dr. Spongebob otherwise known as Dr. Futterman :) We ended up having issues with the pharmacy which made her chemo arrive 2 and 1/2 hours late, which in turn made us have to stay at the hospital until 11:30pm, with no room to stay in because the HEM/ONC was completely full. With the ice it took us forever to get home! We then had to turn around 6 and 1/2 hours later and drive straight back to the clinic for more chemo! We got home at about 6:45pm today. Jade went to take a bath and when she came down she had blood stuck in her access line…so off to the ER we go…Needless to say this week has not started the way we would have liked, but all in all Jade is doing well so far, so can’t complain too much!

Please keep Miss Evy Carroll in your thoughts and prayers tonight as her family received news today that her heart has weakened because of all of the chemo, she will be starting 4 new heart medicines tomorrow to try to help it. She will be in the hospital for observation to make sure her kidneys can process the new medicines!

*~*Jade hard at work in the nurses station in 5 North*~*

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by Linden

Merry Christmas & Happy Birthday!!!

Dec 25

This is the time of year where everyone reflects on their year/life, what the want to change, what new goals they want to make for themselves, ect. This time of year to our family will always mark the anniversary of when Jade went into remission, which ultimately gives us yet another wonderful birthday! The American Cancer Society says that they are the “Official Sponsors of Birthdays” and to our family they definitely are!!!

Today Jade turns 7 and for that I would like to thank ALL of her amazing doctors and absolutely wonderful nurses, as Jade wouldn’t have made it to this milestone without them!

We hope you all have a VERY Merry Christmas!!!

by Linden

One less thing…to think about!

Dec 08

Radiation is DONE!!!! Jade did extremely well with her radiation treatments! I would like to thank all of the absolutely wonderful people that work in the Radiology/Oncology unit at Fairfax Hospital! They all made Jade so comfortable with everything that she needed to do. Today they had a little party set up for Jade today after her last treatment. They told her that Dr. Kanani (her radiologist) wanted to see her and had her go into one of the patient rooms. When she opened the door there were balloons, presents and donuts! :) Dr.. Kanani told us yesterday that there can be a side effect of extreme tiredness 6 weeks after completing treatment and to be on the look out for it. So of course I have it scheduled in my phone as a reminder to be on the look out! (God forbid my phone breaks, as I have all of her appointments and scheduled chemos programed into this thing!!!)

While we were going through radiation Jade (of course) made lots of friends. Everyday she would talk to everyone in the waiting room and became friends with the man that had his appointment before us. He is fighting his second relapse of lung cancer (never smoked a day in his life)! Last Friday he brought Jade a present with a get well card! It is amazing how wonderful people can be, with everything this man is going through he took time out of his day to think of Jade and decided to get her a present! (Which she absolutely loved! It was a miniature piggy bank that came with stickers and paints to decorate)

After treatment we had to run by the clinic because we needed to get our parking pass for Dulles Airport to go on United Airlines Fantasy Flight 2010 to go to the North Pole to visit Santa!!!! (We will be going this Saturday…Pictures to come!) While we were at the clinic we ran into Khalim, Jade’s big brother/partner in crime from the hospital! Jade ran to him yelling his name and jumped on him! (She hasn’t seen him in awhile!) It was so great to see him, definitely one awesome kid!!! They really are BFF’s :)

After we left the clinic took a trip up to D.C. to visit Auntie Caitlin, Auntie Liz and Miss Petunia! Of course we took miss Tuna on a walk. (Jobi I think Jade may fight you for visitation rights to this dog! lol)

Yesterday Jade’s Home Bound teachers started. She has two teachers (Miss Kim and Miss Allison) that are splitting the 20 hours a month that she is allocated by the county. Jade likes both of them a lot! I told her she was going to start getting report cards soon and she responded with “How? I’m not even going to school!” Her teachers and I had to explain to her to her that this is considered school. I think she was confused because she thought they were more like tutors than teachers. :)

Petunia was giving Jade lots of kisses!

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by Linden

Bittersweet…

Nov 29

Today is bittersweet for us. It has been 1 year since Jade was diagnosed with Philadelphia Chromosome Positive T-Cell Acute Lymphoblastic Leukemia. It’s been 11 months since she has been in remission. While we absolutely cannot stand the fact that Jade has to go through all of this, we also have to celebrate the fact that she has been doing so well and keeping her amazing attitude about the whole thing!

Jade’s Amazing Attitude:

As some of you know Jade’s hair was coming back (a lot!) and this last round of chemo kicked her (you know what) in more ways than one. Her hair started falling out again and she started to get a bald spot in the back of her head. When I showed her the bald spot she looked at me and said “eh just shave it all off!”  This is coming from the kid that has been referred to as a “baby” (on more than one occasion) by small children in the grocery store, all because she is bald and obviously they don’t get it…She just laughs it off as the parents of these small children apologize with embarrassed looks on their faces.

Today also marks the start of Jade’s radiation treatment to her brain. While she is her normal calm and cool self about the whole thing, I myself am just as nervous and scared as when she was first diagnosed! I know that more than a million kids have had this treatment before and unfortunately more than a million more kids will have these same treatments, but the whole thing, to be frank, SUCKS!!!! None of these kids should EVER have to go through any of this!

So what I ask of you today is to talk to someone, anyone, even a stranger about the hardest thing there is to talk about…kids with cancer…tell them about Jade’s story, if not Jade’s story tell them about Declan, Little Evy, Big Evy, Jordan, Lauren, Carson, Little Brooke, R.J., Jack, El Hussein, Zahra, Ben, Drew, Trevor, Eddie, Becca, Andrew…these are just a few of the amazing kids we have had the pleasure of meeting during this whole life changing experience. The only way any of this will ever stop or at the least slow down is for people to help the cause by donating to cancer research and not just cancer research in general, we need funding for CHILDREN’S cancer research!!! If you are unsure of how or what organizations to donate to please send me a message and I would be more than happy to point you in the right direction!

The small triumphs are the things we count now because in the end it brings us one step closer to the end! The countdown begins…just one and a half more years to go!!!

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by Linden

It’s a time for thanks…

Nov 25

As I sit here with my girls on Thanksgiving I can’t help but think of how much simpler our lives were just a year ago…but life is what it is and we just have to roll with it! This past year has made me realize what is most important in life and who is most important. I have a lot to be thankful for this year…my girls, my family, Jade’s Doctors, all of the wonderful nurses, all of the amazing families I have met over this past year and everyone that has helped support the girls and I!!!

The one thing that I hope everyone gets from this Thanksgiving is that life is short and can change at the drop of a dime…don’t just be thankful or show that you are thankful one day a year!

Thinking of all of the families that have lost a loved one and those that are struggling to keep going! You all are always in my thoughts and so close to my heart!

by Linden

The Things Kids Come Up With!

Oct 20

So tonight Jade tried to sneak off to bed without taking her medicine…(she thought she was being slick by going to bed early!) I said OK…then as I’m walking down the stairs I see her medicine backpack. I called up the stairs and told Jade to come downstairs and take her meds. She came down and said “What?! I was just trying to be an ordinary girl and go to bed without taking my chemo!” and before I can even say anything Hailey yells from upstairs, “Jade you are no ordinary girl…you’re an extraordinary girl!” Jade responded with “Huh? No I’m not…wait what does that mean?” hahaha they are nuts, but I totally ♥ moments like this!!!!

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by Linden

It’s the little things…

Oct 11

So lots of things have been going on over the past few weeks…

One…Jade was fitted for her radiation mask as we are nearing the start of her radiation to her brain. She will have a total of 8 treatments of radiation. Each treatment will be approximately 10 minutes. When we went for her initial consultation…I must say I was a little surprised! We have always had a vision the the “mask” that she has to wear during her treatments was more of a helmet…yeah not so much! Below you will see a picture of a “mask” she has to wear! The one she has was specially fitted for her head. It started out as a flat piece of plastic and was placed in 165 degree water for a few minutes to get soft. After that they shook it off, placed it over her face and molded it to her head. They then clamped it to the table so that she could not move. She did surprisingly well…I sure wouldn’t have!!!

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Two…Jade, Hailey and I got to spend a day at Cox’s Farm Pumpkin Patch thanks to DC Candlelighters! We met up with Brian, Jill, Evy and Stella and everyone had lots of fun! All of the kids (ok, ok and us adults too) were exhausted by the end of the day! We also got to see Big Evy (she is 5) and her family!  Below are some fun pictures from the farm.

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Three…Jade started her first round of her Maintenance Phase!!!!!! At this point we should no longer be in the hospital 2 to 3 weeks out of each month…crossing my fingers! She has started two new chemos that she now takes at home along with her Gleevec. One is a chemo that she has been taking through IV in high doses, but now she also takes it in pill form at home once a week (Methotrexate). Two is a new chemo called Mercaptopurine (otherwise known as 6-MP). Each Monday she now has to take 12 pills and each subsequent day she has to take any where from 4 to 5 pills. So far she hasn’t had any issues with them! While we were in the hospital Jade was able to spend some time with her mini me aka little Brooke! She loves that little munchkin!


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Four…Today was an awesome day! We went to get Jade’s counts checked today and she is hanging in there! For those of you who don’t understand…it’s ok…Below are Jade’s counts after starting all of these chemos…

ANC: 1245 WBC: 2.23 Hgb: 11.2 Platelets: 167

This all means that Jade’s counts are staying steady!!!!!! To top off the day little miss Hailey came home with 4 A’s and 1 B on her interim report!!!!!

Like I said…it’s the little things…

by Linden

Special Thank You!

Oct 06

Last weekend my totally AWESOME cousin Jodi ran the Medtronics Twin Cities Marathon in honor of Jade. She joined Team In Training in Minnesota and has been training and raising money for the Leukemia and Lymphoma Society for the past few months! She did a fantastic job in completing the marathon!!! I am ecstatic to say that Jodi was able to raise $10,735.00! She was the #1 fund raiser for Team In Training!!!! I would like to thank Jodi for all that she has done and everyone who donated to the cause!


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by Linden

Just Some Thoughts….

Sep 02

September is Childhood Cancer Awareness month and this month is especially important to my family and I! Today I took  Jade to visit her friends grave :( He did not make it to see his first birthday! I blame this a lot in part to do with the fact that the American Cancer Society, who raises over $1 Billion Dollars a year for research only designates $4 Million dollars to childhood cancer research! These children are our future and we are letting them fall through the cracks! Please help raise awareness not just this month, but every month! These kids deserve a fighting chance and we cannot do that unless they get the research funding that is needed to help them!!!

We started our day out at the clinic to get Jade’s counts checked hoping (yes weird to say!) to go into the hospital for chemo. She did not make counts, but we will continue hope for higher counts which is more than I can say for some! When we were there we ran into a family that recently got some bad news. (Please pray for them, I cannot release their name as I don’t know they they would like that, so please pray for another of Jade’s friends…she is a teenager.) We then went on to visit Declan…our visit with Declan went very well! Jade has never been to a cemetery before. Declan had stuffed animals and a balloon shaped as the #1 for his first birthday. When we got there it was very calm and peaceful with no wind. Jade tapped her foot on the turned up dirt and asked “is this where Declan is?” I told her that she cannot step there because he was under there. As soon as I said that  the wind picked up and the balloon started to wrap around Jade! The rest of the time we were there the balloon kept following her. Now as most of you know I am the most religious person, but this was definitely Declan telling Jade he was there! I told her he was trying to give her hugs. When we left Jade grabbed the balloon and gave it a big hug and said “Goodbye Declan I love you and miss you and I will come back soon”. Of course I was in tears, but she acted like she had just seen him on any normal day!

To end our day I received a phone call from my aunt about her coworkers daughter who underwent a major surgery to remove a very large tumor that took over her entire lung and a piece of the tumor that had grown towards her heart. The news was GREAT!!!!! She had surgery on Monday and they are planning on releasing her tomorrow! I could not have ended this day on any better news than that!

Over the past 9 months Jade and I have become very close with a lot of families that are battling cancer. Although these kids are  not all battling the same cancer, they are all going through the same horrific events that no child should ever have to deal with! These children have to know so much that they shouldn’t know at their ages and become little adults way too fast! You don’t hear about these kids and their stories that much, most people turn the channel when the St. Jude’s commercials come on because lets face it…its extremely sad and depressing! The week Jade was diagnosed I ran to CVS to pick up some stuff and when I went to check out the man asked me if I would like to donate $1 to St. Jude’s and I burst into tears right there in CVS with 20 people behind me in line!!! I can look back now and kind of laugh, but the bottom line is no matter how depressing the thought of children with cancer is it will never compare to what these poor kids are going through!

I would like to give a special thanks to all of the researchers, doctors and most of all the PARENTS of children with cancer for doing what you do everyday, it’s not an easy job, but as we all know…KIDS CAN’T FIGHT CANCER ALONE!!!!

This is for all who are fighting, for all who have survived, and most importantly all who have lost their battle to cancer. (We will think of you always!!! xoxo)

39899_10150252872195195_571205194_14660605_1720607_nRest In Peace Declan Black Carmical…You are always in our hearts!

by Linden

Update…

Jul 07

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)

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by Linden