People Against Childhood Cancer (PAC2) Update ~ September 2011
People Against Childhood Cancer (PAC2) Update ~ September 2011
MindiTheMagnificent |
Living with Magnificence, kicking Childhood Cancer's ass. |
Gregory's 2nd annual post transplant visit: Long Term Follow Up. Number 2!
Hi there!
Have you heard about 46 Mommas Shave For The Brave? We are a group of 46 mothers, from across the nation, who have all heard the words, "Your child has cancer.". Why 46? On average, every weekday, 46 families hear those words. We 46 Mommas represent the complete randomness and diversity of childhood cancer. We have partnered with St Baldrick's Foundation, who funds childhood cancer research. In 2010, they funded $14 Million in childhood cancer research. This is done, primarily, through head shaving events.
Our event, where we will shave our heads in Washington, DC on September 21, 2011, requires all of the Mommas to travel to Washington, DC. Many of us are in the general area and plan to drive down, but many will need to fly to the event.
One of the harshest realities of pediatric cancer is the financial impact on families. Medical care, travel/food/lodging/parking during lengthy hospital stays and multiple clinic visits, expenses to care for children left at home who need daycare/babysitting, and the list goes on-including the loss of one income in many dual income households.
So today we are asking if you can help us to find generous people who can donate any unused airline miles that have accumulated and/or to sponsor an individual Momma by providing her with an airline ticket.
Many of us have dedicated a large portion of our time and energy to raising funds to support St.Baldrick’s research efforts. To change the face of pediatric cancer we hope to raise 1 million dollars! With roughly 13,000 cases of childhood cancer diagnosed every year in the US, we cannot compete in the world of obtaining adequate research funds. Childhood cancer is severely underfunded by the US government. The pharmaceutical industry does not invest in childhood cancer research. There has been only one new drug created specifically for childhood cancer in last 25 years.
We rely on donations from people like you to support research and create change. Our call to action is clear: we cannot wait for the government and industry to pay attention to childhood cancer. These kids need us and we need your support to make a difference.
"Curing childhood cancer is the equivalent of curing breast cancer in terms of productive life years saved." ~ Dr. Eugenie Kleinerman - Head, Division of Pediatrics,
Children's Cancer Hospital at MD Anderson Cancer Center Source: People Against ChildhoodCancer (PAC2)
www.stbaldricks.org/events/46mommas
So now we need your help.
Can YOU provide wings to a Momma and fly her to DC?
--
Mindi Finch
Momcologist & Team Leader, 46 Mommas 2011 Campaign
Spokane, WA
Mommy to Curtis, AnnMarie & Gregory
mindithemagnificent@gmail.com
Our family's Odyssey with Gregory's diagnosis of Juvenile Myelomonocytic Leukemia (JMML):www.mindithemagnificent.com
"You are the bows from which your children as living arrows are sent forth." ~ The Prophet. Kahlil Gibran
*Won't you help me fund a cure? Do it now. Make a donation to fund Childhood Cancer Research.
Childhood Cancers are the #1 disease killer of children under the age of 15 — more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
www.46mommas.com/mindifinch
Awareness=>Funding=>Research=>Cures
"Curing childhood cancer is the equivalent of curing breast cancer in terms of productive life years saved." ~ Dr. Eugenie Kleinerman - Head, Division of Pediatrics, Children's Cancer Hospital at MD Anderson Cancer Center
Burzynski ~ Antineoplastons
I watched this, today. Curious to see what my Brain Tumor friends/community think about this. Especially those affected by DIPG.
Burzynski: Cancer Is Serious Business from BurzynskiMovie on Vimeo.
Nine years ago, Curtis began is sojourn through education in a classroom of peers.
I couldn't find a picture from Fall of '02. This is Fall of '03. He's 4 years old.
To say that he has "....come a long way, baby!" would be a huge understatement. The social/emotional/behavioral growth that he has achieved over the last nine years is breath taking.
I've been spending much of my time, lately, thinking about this child that I call "My wish come true.", "My Eldest", "My Firstborn". This is the child that I dreamed about from the time that I understood that I would someday be a Mommy. This is the child that will/has receive(d) the blunt force of my learning to parent. This is the child that I do/will ask to grow up quicker than he should. This is the child who is NOT neruo-typical. This is the child that has taught me that it is MY responsibility to be their champion. This is the child that is quickly turning into a young man.
Curtis is unique, smart, snarky, loving, sensitive and sometimes a major PITA. My mantra, through these years, has been "He'll be a dynamic adult." His quirkiness will bode well as he becomes an adult. Yet, it is up to his family and community to help guide him along the way.
The Montessori community has been an outstanding fit for Curtis. He has learned many coping skills and been surrounded by teachers and students that give him the space he needs and gently encourages him to cross his very rigid boundaries. They have been his lifeline, whether or not he realizes it.
In September he will be entering a new and strange environment. Middle School. Standard, public Middle School. I am in the process of creating a welcoming environment for him there. Working with his new counselor to help him adapt and learn to navigate the gigantic changes he has ahead.
This is the poem that his teacher, that he's had for the last three years, wrote for the graduation ceremony, to Curtis:
Spurts
Sudden bursts of energy, effort, and activity
Divulge unbridled intellect
And glimpses of your unrealized potential.
You catch the concept
And catalog files of facts,
Absorbing the ideas around you
With breakneck speed.
We witness your growth
In body
Self-understanding,
Social connections,
And wait for a steadying force
To quell your restless mind.
This was taken while Mrs Bowman was reciting Curtis' poem. The glance between us when she read the line "We witness your growth/In body".
Part of the ceremony is for every student to read a letter that they have composed in advance, to their teacher. As we got closer and closer to Curtis' turn, I began to wonder what was going to come out of his mouth. Writing something like this is NOT his cup of tea. It was not a required writing. There was not to be a consequence if he did not write it. True to form, he had not written anything. Yet.....
Curtis stepped up to the mic and very bluntly stated that he had not written or prepared anything in advance. He announced that he was going to "wing" it. He proceeded to state that he had really enjoyed his years at Jefferson and his teachers. He got a little tongue tied in trying to explain his feelings/emotions. He stated: "I just can't explain it. In the words of Albert Einstein, 'If you can't explain it simply, you don't understand it well enough.' I can't explain it, I don't understand it." He floored everyone, especially myself. Curtis is not only going to be a dynamic adult, he simply is dynamic.
I love this kid from the very depths of my soul. He is "My dream come true.".
Here's to beginning an entirely new chapter in his and our lives.
~Mindi
Momcologist
Here is my reading from Listen To Your Mother Spokane.
The rest of the videos can be found here.
So. This is the point where I should be doing a post-clinic visit re-cap. Just have not been feeling it, lately. It seems like I spout the same information, use the same disclaimers (over and over and over) and continue to cross my fingers.
Except with this clinic visit, I had a moment. Labs were drawn, we headed over for his Pulmonary Function Test (PFT) then returned to clinic for a visit with the doc and lab results. His blood draw was flawless. The PFT? Well.... they don't usually do this testing until kids are six years of age. Gregory will be six the end of June. I forgot that while he is chronologically six, he is physiologically around four. His little mouth was not big enough to do the full testing. He did a test where you breathe normally through a mouth piece. Then he received a Nebullizer treatment. Followed with another round of breathing. We won't have results until sometime this week, but I really don't think it will show much. Also? Wouldn't you know it that he was sat'ing at 99. Turkey. The guy who did his testing was AWESOMESAUCE. He was absolutely enthralled with Gregory and they had a blast together. Then came the labs. This was my moment. I took a look at the labs, everything looks great. Right along with Gregory's "normal". This is when I realized..... 28 more days. We have 28 more days to breathe easy, thank our lucky stars and revel in his existence. I looked at the labs, received my confirmation that all was well within his little body then put those worries away. Tucked them on their shelf to wait for 28 days. First time I've been able to joyfully accept what is and then carry on. He is down to 1mg of Prednisone every other day. We taper to 0.5mg every other day on Thursday, for one week. Then no Prednisone. One year, eleven months of Prednisone. I'm not saying a huge Farewell or celebrating it's departure. The reality of Allogeneic Bone Marrow Transplant is that GVHD will always be a shadow. He may need Prednisone, from time to time, for the rest of his life. He is still on Sirolimus, which is his other immune suppression drug. We will remain at zero Prednisone for a month, as long as he does not have any major GVHD flares, we will then begin to taper the Sirolimus. Keeping my fingers crossed that he will have an uneventful summer and be OFF of his immune suppression meds, soon. Crossing fingers, but prepared for anything. In the last month he has had a few bouts with severe stomach aches and a couple days of diarrhea. I'll take a day here and there. Yesterday he did start with a red, flaky area around his nose. He has also been itchy. Not in one place. Just kind of itchy in different places, through out the day. Could this be GVH? Could be. *shrug* I have a love/hate relationship with GVH. It keeps his disease at bay, but causes random symptoms that are not easy to pinpoint. Which keeps my hyper-vigilance in high gear. The Eldest (Curtis) & The Artist (AnnMarie) spent three days/two nights this last week at their school Camp Out. Once again, I was not able to attend. I have yet to find out how much fun they really had. They are of an age where coaxing information out of them is challenging. The pictures that others took are starting to come through and it looks like they all had a really great time, while learning about themselves.
It's Middle School for him this fall. Where does the time go? (That's rhetorical. Duh!) Here's The Artist from Mother's Day. She made me Breakfast in Bed. Then we devoured it together, with glee.
Once upon a time, I lived a normal life. Then I met Childhood Cancer.
