Summer Seven

Joanna at The Fifty Factor has invited us to join her in a Summer Seven, a list of  7 off-the-top-of-our-head happenings of summer. As exciting as I know you would find my summer happenings, I want to update you on the summer of someone else who has had a very eventful summer  Several of you have asked me about Addison, the now 7 year old son of my daughter's friend who was diagnosed with Leukemia when he was 5, in April, 2010. Addison has completed 16 months of chemo and still has 22 months left to go until he is cured. Addison's new motto is "I don't have time for cancer". Here are 7 of his many summer activities that show how true his motto is.

 He was named the Leukemia Society's Boy of the year. With this title he has participated in numerous fund raising activities and speaking engagements. Addison is an actor who takes these events seriously and performs them perfectly.

Hiking with his family

Taking a little rest follow a fundraising "wellness walk".

There are good days and bad days and fatigue comes easily due to the disease and the medication.

Taking  his sister, Madelene, to Asthma Camp.

Waking up from a spinal tap to greet his friend, Bella, who is also fighting Leukemia.

Participating in the "survivor lap" of a local Relay for Life cancer fundraiser.

All of these picture are from Addison's Facebook page "Help Addison Kick This Thing" which has over 1000 followers. 

It is amazing to see how far Addison has come since the early days following his diagnosis and the beginning of his treatment. 

Please keep this amazing and brave little boy and his family in your thoughts and prayers. 

Addison Update

It has been a tough year for Addison, the 6 year old son of my daughter's friend, Sarah. Last April Addison was diagnosed with Leukemia. Since the diagnosis he has gone through 6 months of very intense and difficult treatment. He has endured chemotherapy, numerous spinal taps, steroids with all the side effects, seven transfusions and many, many blood tests. During this treatment he has been mostly confined to home and the hospital due to a very low immune system caused by his treatment.

Addison has completed the most difficult part of his treatment, but will continue on chemotherapy until July, 2013. The phase of treatment he is in now is far from easy, but the doctors are allowing him to return briefly to his first love, acting. Last year Addison played the role of Tiny Tim in the Colorado Shakespeare Festival's presentation of  A Christmas Carol. Addison will be back this year playing Tiny Tim in 5 of the play's 25 performances.

This is a step back toward normal life for Addison, and according to his mother, Sarah, being able to attend rehearsals has really lifted his spirits. He has Tiny Tim's limping walk mastered and says the "God bless us, every one" line with a perfect English accent.

It's the perfect role at the perfect time for a little boy who, in spite of a really, really tough year, is still full of courage and spirit.

A Postscript To My Previous Post

Addison's counts have risen enough for him to resume his chemotherapy. This picture of Addison and his friend, Bella, getting ready to receive their chemo was so compelling to me that I wanted to share it.

Notice their hands

You've gotta have friends

A Really Mean Thief and An Addison Update

You can click here  "Help Addison Kick This Thing"  or on the logo to the right if you have not met Addison.


Following are exerpts froma a story that appeared in the Boulder Daily Camera newspaper after a gift that was given to Addison that helped him get some much needed exercise and outdoor time was stolen from his back yard.

 That Tuesday was going to be a bad day for Addison Kleinhans, no matter what happened.


Addison, 6, was diagnosed in April with acute lymphoblastic leukemia. That Tuesday, June 8, he was due for an appointment at The Children's Hospital in Aurora, where doctors would draw his blood, yet again.

The test would show if Addison could progress to another round of chemotherapy and if his immune system was strong enough to allow him to be around other children.

Not that Addison would have any energy to play, because the chemo took that away, too.

"The first two months were really hard. He just slept all day," said his mother, Sarah Kleinhans.


Doctors didn't like the results, meaning at least another week inside and away from kids, Sarah Kleinhans said, but Addison did have one thing to look forward to on that day of bad news.


A family member had given Addison a 6-foot-tall yellow Giga Ball the day before. Addison could climb into the ball and roll around in his backyard.

51" Giga Ball

The Giga Ball is a toy and wouldn't protect Addison from germs, but Addison's parents hoped that it would encourage him to play and get some exercise.


"Anything that made him want to move was perfect therapy for him," his mother said.


Addison had spent the prior evening playing in the backyard with his sister, Madelene, 8. It was the first time in a long time he seemed to be having fun.

Addison with his sister, Madelene

But that night, the ball disappeared from the Kleinhans' yard.


"He was just crushed," Sarah Kleinhans said.


A neighbor, said she and her husband awoke about 2 a.m. the night before to discover a prowler in their backyard. They confronted him and he fled, but by that point he had been in the yards of several neighbors. Neighbors suspect he vandalized several homes and yards and stole Addison's ball.


Instead of feeling threatened about the prowler, the neighbors are just angry about the  playful little boy down the street being crushed about losing his Giga Ball after going through so much.

Addison's family and large network of friends -- the Facebook group "Help Addison Kick This Thing" has 864 members -- aren't interested in seeing the thief punished. They just want to make him understand.


"If they caught this guy, he needs to spend a day with Addison in the hospital, to get a finger poke and to see the kids throw up," Kleinhans said.


The story has a happy ending, though. A friend got Addison a new Giga Ball.


About 80 percent of children are cured of the disease, according to the American Cancer Society. But the full course of treatment takes three years, and there is a small but statistically significant chance of relapse.


"Relapse is one of those things we'll be afraid of until he's 100," Sarah Kleinhans said.


As of a couple of days ago, Addison"s blood count was still not up enough for him to resume chemotherapy, but it is going up, so he will hopefully be able to resume his treatment soon.  He has to endure the dreaded finger poke every few days to check his blood count.

Addison with his new Giga Ball

Thanks to everyone for the interest, kindness, support, donations and prayers for Addison and his family.

Addison Update

Addison

The following is an update written by Addison's mom. Several of you have asked about him in e-mails and this is such a good narrative of what they have dealt with and what they are facing I wanted to share it.

Its been a hellacious road, one I would never wish on my worst enemy but one we have no choice but to travel. Addison is doing GREAT in this session of chemo. His treatment will be in 5 sections, the first one being the most awful and personality changing. The first section, called Induction, is where they blast his body full of chemo to get rid of the cancer which was 98% of his bone marrow at diagnosis. The next 2 sections are a little easier as he is off the steroid (this made him eat all the time and be very sad - when it got into his system, he hardly ever smiled and would close his eyes if he tried to speak with you as if he wanted to shut out the world). The chemo made him tired and he was only awake to eat and then would sleep most of the day. He got so puffy and gained 10 pounds, it was like living with a stranger. 

Now, he is in phase 2 and back to himself. Its magical. The "visible" leukemia is gone (this happens in 95 %of the cases of this type) but now it will take 35 more months of chemo to make sure it stays in remission. He has no hair but he is so funny and full of energy. His immune system is temporarily up enough for him to have healthy visitors. Phase 3 will be very similar so that will be nice as well. I do use the term "nice" lightly though. Every week in phase 2 & 3 (each a month), we have to go in to the Children's Hospital  (about 45 mins away ) where they put Addison under to administer chemo in his spine and do a spinal tap. He also gets a blood count (scary for me to wait for these results each week as they tell what his immune system is doing as well as his need for transfusion or platlets) and chemo in his permanent IV port in his chest. He has an oral chemo nightly.
They have prepped me that phase 4 is similar to phase 1 in its intensity. It is the final huge push to keep the leukemia from relapsing. Its 8 weeks long - the first half being nausea filled days and the second half with his counts dangerously low. All throughout, fever is our worst enemy. If he reaches 101 he must go to the hospital immediately. If his immune system is low, he will be admitted. He has had a few days where he reached 100.9, its terrifying to say the least. But, so far, aside from the first week, we have avoided the ER and hospital stays, YEAH! In phase 4 he will have steroids again for 7 days at a time and then off for 7, etc so the effects won't be so severe. Chemo in IV 7 days at a time, chemo in shots in the legs, chemo in his spine as well as orally (the oral will remain part of his life for the next 35 months). 
BUT, then, if all goes well, he goes into phase 5: 2.5 years of oral chemo nightly and a spinal/iv chemo only 1 day a month! Barring any fever or strange occurrences, it should be much better. His immune system will drop periodically but it hopefully won't be as tough as the first 6 months.
Now that I am seeing Addison return, I have hope. I no longer feel like this is a death sentence, but rather a gift of life. We are feeling so much love and support, its incredible. Humbling. Addison told me the other day not to worry because he had really worked hard to kill the dragons in his body. I believe him. He told me he is magic and I am starting to believe it. ;) I have to.

Keep reminding us to live, laugh, and breathe!!!

 Addison with his mom, Sarah and his sister, Madelene
with a dragon cake made by a friend to help Addison fight his "dragons"

 Thanks Sarah for this update and thank you to all of you who have asked about and prayed for Addison and a special thank you to Jenny Matlock who is generously contributing a quilt to the fundraising efforts for Addison and his family