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Thanks for stopping by!  Gregory is four years old and undergoing an Odyssey with  Juvenile Myelomonocytic Leukemia.  JMML is an extremely rare leukemia, which affects Gregory's production of healthy platelets, red cells and white cells.  Basically his entire blood producing system.  Our Odyssey began on February 23rd when he was admitted for flu symptoms and dehydration.  We are currently in Seattle, WA under the care of Seattle Cancer Care Alliance (SCCA).  Gregory's only course of treatment is a Bone Marrow Transplant, also known as a Hemotopoietic Stem Cell Transplant (HSCT).  On April 21st we received that magic phone call, notifying us of a perfect 10/10 transplant match.  We arrived in Seattle on Monday, May 11. We were admitted to Seattle Children's on Monday June 1, to begin pre-transplant conditioning.  (AKA:  Heavy Duty Chemo).  Gregory's transplant began at 4:10am on Thursday June 11, 2009.  We were discharged after nine long/short weeks.  We are out-patient in Seattle and hope to be HomeHome by the end of September.  After a minor set-back, we were able to return to the Spokane area on Sunday, October 11.  Gregory and I are staying at our family's place on the water, for a few weeks.  The house is not quite ready and we want to be sure that the siblings are well.  We will be returning home, soon.

Whew!  We finally moved back HomeHome in August of 2010.  Gregory is still undergoing treatment for Graft Versus Host and this could continue for years to come.  Trying to teach his new Immune System to not destroy his body.

You do not need to have a LiveJournal account to comment.  You can comment anonymously and simply sign your name.  You can received journal update notification through CaringBridge.  There will be a link at CaringBridge for every entry at LiveJournal.  Simply click on that link and it will bring you to the entry here. 

I am also on FaceBook (Mindi Finch) and Twitter (MagnificentMndi) .  Sometimes brief updates are available there, before they make it to my LiveJournal.  My LiveJournal Twitter Feed can be found here:  magnificentwit 


Thank you to everyone who has/will touch our lives.  Everyone of you will forever be a part of our families history. 


The Odyssey Thus Far from MindiTheMagnificent on Vimeo.
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Words, words and more words. I've got words coming out of my ears. Words from Mothers, words from books, words from medical journal, words from new stories. I've got so many words of others in my head, that I cannot sort them out to find MY words.

I read one of my essays for  Spokane's first annual Listen To Your Mother Show, this past Sunday. On Mother's Day. It's taken me a while to decompress. There were 12 of us that read essays (our WORDS) on Motherhood. It was amazing. Flawless. I really hope it was as well accepted as I witnessed it. I am incredibly proud of my contribution. I know this sounds incredibly egotistical, but the piece I read came off exactly as I wanted it to. It was powerful. I rocked it. I was going to share the text of the essay, but I'm not going to do that until the video is available. If you get a chance to read the text first, it will lessen the impact of the spoken words. So.... you'll just have to wait. Yes, I did speak about Childhood Cancer. That much I'll tell you.

As I am processing this experience I am starting to tap into my "Me". The parts of me that have been dormant for the last 2+ years. I've been resisting it. I think this gorgeous weather is helping. I also think I am ready. I've been walking a tight rope between the childhood cancer world and the outside world. I won't say that I am finding a balance between the two. I'm just finding that I can be me. My authentic me. Which now looks different than it did prior to February of 2009. I already did the blooming thing, quite a few years ago. I followed my favorite Anais Nin quote and bloomed.

"And the day came when the risk to remain in the bud was more painful than the risk it took to bloom." - Anais Nin

The fact that I have to bloom AGAIN was getting me down. The idea that I was the same flower was getting me down. Then it struck me. I am NOT the same flower and I CAN bloom again. Yesterday I was a sweet Daisy, today I am a hearty Sunflower. With a thick bristly stalk, great green leaves and a big bright face that produces nourishing fruit. A flower that comes back year after year after year and blooms where ever it's planted.

Part of this catharsis was also getting together with seven other local Momcologists. Several hours of leisure time and great food. I looked around the table at these women and felt such a deep love and connection. We had eight women. Between us we have 11 Cancer Kiddos. Four of those kids no longer walk this green planet. One of these women adopted a small child with the same cancer that killed her daughter. One of these women have two daughters diagnosed with ALL. One of these women lost two of her kids to cancer. Somehow we have found one another, connected in a way that cannot be explained. I cannot wait to do this again. There is much to be shared, learned, witnessed and received from these women. I love them.

Gregory has had so many changes in the last several weeks. He has remained OUT of the hospital since February 25. I have had a raging chest/sinus cold and he barely has a whiff of it. We are still tapering his prednisone and we are down to 2mg, every other day. He has small symptoms, but nothing that needs to be treated. His IgG was low at his April visit, so he did receive IVIgG the last week of April. I had forgotten that his GVH likes to attack his marrow production. I also forgot that steroids artificially increase the white blood count. His last WBC was a measly 1.9 with an ANC of 1,670. His platelets remain really strong. His Hematocrit still is below normal. 32 at this last visit. "Normal" range is 34-40. Yet, from what I could tell, his labs did not reflect that his marrow was working overdrive to bring those numbers up. These are acceptable numbers. Just lower than I would like to see him. Only time will tell what is to come.

I bit the bullet and asked for a Pulmonary Function Test (PFT) At his last visit his oxygen saturation was 92. While it's not decreasing with the pred taper, it's not getting better, either. His High Resolution CT's are still showing no signs of GVH (Last one was in December. He'll have another in June for his 2 year follow-up in Seattle.) I'm not sure if there is anything that can be done, either way, but I feel the need to be proactive. If there is something going on and we can avoid further deterioration, thus avoiding the need of oxygen, THAT is what I am looking for. In the world of GVH, being reactionary is NOT a plan of action.

He has also finally lost his lower two front teeth. MAN! His adult teeth have been coming in behind them and he was just too nervous to loose them. Which means that he does not have the infamous toothless grin. *shrug* His memory book has pictures with hairloss, hickmans, G Tubes, Ng Tubes and gigantic IV poles. I think we can live without a toothless grin picture. He also had his first "little boy" haircut since April of 2009. I just have not been able to let anyone cut it short. I have enjoyed the soft, wavy length of it. It had to be done, though. With the added warmth of the weather, it was time for it to go, for his comfort. His eyes and skin are so sensitive that he MUST wear a sun hat at all times. He's been playing outside, post haircut, and is sweating. Yes, it was a good idea to cut it. Although I prefer the long locks. It's only hair, but for some reason it is an emotionally laden part of our existence.

As always, I send you love.
Until another time....
~Mindi
Momcologist

*I need your help.  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

Posted via email from MindiTheMagnificent

People Against Childhood Cancer (PAC2) Update

www.46mommas.com

People Against Childhood Cancer Update (PAC2)

PAC2 (People Against Childhood Cancer) is my "go-to" source for information and community. Here's the latest update. There is some GREAT information in here. 
Take the time to read through this and check out the links.
~Mindi
Momcologist 

Hi PAC2,
We've been getting ready for the March 18 workshop in Washington DC. Fellow advocates and representatives from 25 childhood cancer organizations will be attending. We feel humbled and look forward to working with these incredible people as together we work to advance the search for the cure to childhood cancer. We can't wait to write the report to share with you. Here's a bunch of childhood cancer news over the past few weeks....

Research & Treatment

code cracked for most common pediatric brain cancer - a major research accomplishment from collaborative funding by Alex's Lemonade Stand Foundation, Pediatric Brain Tumor Foundation, Stand Up To Cancer, Children's Brain Tumor Foundation and others.

Our friends at Solving Kids Cancer hosted a free-webinar on January 25 for families and researchers to learn about all of the different oncolytic viruses in clinical trials for children in 2011. All four principal investigators of the 5 different oncolytic virus trials will be speaking. This online parent/researcher forum can be viewed here.

Article by NCI on the recent research into medulloblastoma. Seeking Better Treatments for Brain Tumors in Children NCI rep is quoted as saying: “These three studies are at the forefront of a large body of genomics-based research that, in the next few years, will redefine how medulloblastoma is diagnosed and how new treatments for patients with medulloblastoma are developed.”
Everybody liked this one. Verification. PTSD shows up in parents of kids with cancer.
The saying is "follow the money". If true; this is good news: "can reduce cancer growth in models of AML (acute myeloid leukaemia) and neuroblastoma (a childhood cancer)". Sareum Holdings shares soar after latest success in pre-clinical cancer drug studies
Commentary on an article from the Childhood Cancer Survivor Study. Interesting in that if you read the Excess Mortality post (http://bit.ly/ExcessMortality); and wondered what it is for other cancers....."Women with breast cancer do not appear to have an excess risk of mortality" - Sobering realities of surviving Hodgkin Lymphoma
"The advances come thanks to the parents of young cancer victims, who donated their deceased children’s brain tumors for research in the hopes of sparing other families the pain they had experienced." - Stanford discoveries offer first new hope in three decades for lethal pediatric brain tumor - Office
Sometimes fertility is the price. Sometimes the price is much higher for the 2 of 3 survivors who face secondary cancers, major organ damage and an 8 times higher risk of death - all from the 'cure' of current chemo and radiation. Is Future Fertility The Price Paid For Beating Cancer?
 "This recombinant protein not only shows selective binding to leukemia cells but also causes their rapid destruction within 24 hours. Perhaps most importantly, CD19-L killed even those leukemia cells that were highly resistant to both standard chemotherapy drugs as well as radiation." Scientists Bioengineer a Protein to Fight Leukemia
 
Some research findings from St. Jude Children's Research Hospital - "Green said the findings provide insight into the mechanisms at work in neuroblastoma and other tumors" Protein identified that serves as a switch in a key pathway of programmed cell death

Advocacy

Protesters worldwide....revolution in the streets....YOU can be part of the cure childhood cancer revolution...head to DC to join CureSearch in March with other childhood cancer advocates. Share your story. Make your voice be heard. Click Children' s Cancer Awareness and Advocacy Day

Our friends at KIDS V CANCER need grassroots advocates in PA and MI to fight for the Creating Hope Act of 2011 to provide incentives to big pharma to do research into childhood cancers. This is your chance to join the revolution...read about the act here.





Awareness

Calling all videographers! Alex's Lemonade Stand Foundation is holding the Oscar's of the kid cancer world. Prizes include an Ipad and Flip cameras. And of course the grand prize is knowing you're fighting childhood cancer....The Lemonade Video Awards


The "Making a Difference" segment on NBC Nightly News with Brian Williams featured The Jeff Gordon Foundation! Godspeed Sunday Jeff, and thanks for all you do to support the kids! Jeff works with CureSearch, Pablove Foundation and others. Jeff on NBC Nightly News with Brian Williams - Jeff Gordon Children's Foundation

Did you know that Feb 15 was International Childhood Cancer Awareness Day!.....(not a lot of fanfare eh?) This is COG Chair Peter Adamson's paper from the International Society of Paediatric Oncology meeting in Oct. 2010 - visit SIOP Boston 2010 - New Drug Development for Children with Cancer

John and Scott, the founders of Solving Kids Cancer are featured in the Wall Street Journal. Three years work, $7 million raised, and 9 therapeutic development projects ongoing. "Setting a deadline of ensuring survivorship for every child with pediatric cancer by the year 2015"....You just gotta "like" Solving Kids' Cancer! Read the story here - Donor of the Day: Dads' Cancer Fight - WSJ.com

Support

Free webinar from The National Children's Cancer Society on transitioning off treatment. Tuesday, March 15, 2011 at 1:30 PM - Optimizing the Life-Long Health of Childhood Cancer Survivors: Transitioning Off Treatment. They also gave away $75,000 in scholarships to kid cancer survivors last year. You need to apply by March 30 for this years. Good luck!

Our friends at The Andrew McDonough B+ Foundation Being Positive! Driving for a good cause at Rolex Grand Prix of Miami - Motor Sports - MiamiHerald.com

Fundraising

Download the latest app and you can virtually shave your head to support our friends at the St. Baldrick's Foundation as they raise funds for childhood cancer research! Oh, by the way, they also have raised over $9,000,000 this year.

Our friends at Bear Necessities Pediatric Cancer Foundation raising $480,000 in one night at the Bear Tie Ball! "Tropicure" Bear Tie Ball benefitting Bear Necessities is a record breaker!


Writing

We love common sense talk that raises the temperature in the room: "If a coast guard helicopter was called out into the ocean to rescue ten people on a sinking boat, one of whom was a child, you know that he or she would without a doubt be the first one in the basket up to the helicopter. So why then does that same human response not apply here? " (more) - Will's Dad

We did the follow-up on the excess mortality chart we saw at the Ped Cancer Caucus. Discussed are the findings of an article from the Childhood Cancer Survivor Study and what it means to the lifetime outcomes of kids. It's sure not something we wish we had to follow up on... Excess Mortality - People Against Childhood Cancer

An ER doc, a 3-time shavee, contrasts St. Baldrick's Foundation and Susan G. Komen for the Cure as he writes on their joint decision for him to shave again after his wife was diagnosed with breast cancer - Movin' Meat: The Cause of My Life

Not exactly writing, but Bob Schieffer talking after he visits Texas Children's Hospital and talks with Dr. ZoAnn Dreyer, noting that government funding continues to be cut in the area of childhood cancer research. Not much to be proud of there...Bob Schieffer on government spending priorities - CBS News Video

This from our friends at KIDS V CANCER: "DID YOU KNOW? Research and development for new drugs from pharmaceutical companies comprises 60% of funding for adult cancer drugs and close to zero for childhood cancers. However, the NCI spends 96% of its budget on adult cancers and only 4% of its budget on children’s cancers."

Yeah, we drone on about it all the time, but here's some thoughts on pediatric cancer research from Samantha Jean Elisabeth. Almost 18, she's warred with childhood cancer since 2003. She says:"I’m furious and I won’t stop being angry until everyone knows about childhood cancer and how truly widespread and devastating it is." Sammi's thoughts on research for pediatric cancer!

News

Turns out, Sammi is right: funding is a huge issue. February saw the publication of 'The State of Research into Children with Cancer across Europe – New Policies for a New Decade' by the European Society for Paediatric Oncology. Primary finding: Funding is too low and dependent on short-term grants to be able to sustain this improvement in the long-term. Here's some other quotes:   "Funding for childhood cancer research is too low and too dependent on short-term grants to maintain the improvements in survival rates" "there's little collaboration between North America and Europe", "little support for young scientists to attend courses which could help the level of knowledge across Europe".
Here are some stories on the report: European Commission : CORDIS : Childhood cancer research needs urgent boost, study shows, Childhood cancer research in danger | e! Science News, The State of Research into Children with Cancer across Europe – New Policies for a New Decade. You can download the report here.
During the recent revolution in the streets in Egypt, crowds grew and it got a little worrisome at a the premier children's cancer hospital in Cairo. Ahmed said that the hospital would be saved. "All of us here," he said, "would lay down our lives to help these children."

Dr. Ann Meadows, a long time pioneer of childhood cancer research was honored in February at Children's Hospital of Philadelphia after 38 yrs of service focused on long-term health of childhood cancer survivors. Thank you Dr. Meadows, and best wishes. Read the story here.


Sad but true. Excess mortality is real. Thank you for all you did Kim. - Kim Hill dies at 44; woman's childhood cancer battle inspired creation of Ronald McDonald House
...."The date of Liam's Memorial Service and Celebration of Life is set for Valentine's Day. It seemed only appropriate that the little boy who represented nothing but love is honored on the day of love." - Gretchen Witt, Mom to Liam and Founder of Cookies for Kids' Cancer. Our deepest sympathy's...

Visit People Against Childhood Cancer at: http://curechildhoodcancer.ning.com/

Posted via email from MindiTheMagnificent

www.mindithemagnificent.com

www.46mommas.com

If it's true that we only use 10% of our brains, I'd like to know how to gain access to the other 90%.


Gregory has continued to battle with this head cold he has. Coughing, sniffing, really bad sore throat. No fevers. His temp is slightly elevated, which means that we are on constant "Fever Watch". He is not very sick, yet the anxiety that it brings is no different. Not knowing from moment to moment if it is going to pop into something bigger. His unknown lung issues contribute to the heightened level of anxiety. Spring is right around the corner. Right? It's just not a wishful dream? It will be here.

I've been meaning to revamp my online presence. Livejournal has served me well, over the years. It's time, though, to use something a little more appropriate. Some time back I purchased my own domain. Then linked it to my blogger account. I will continue to cross-post to the other sources I use, but my primary website will be www.mindithemagnificent.com. Blogger actually has an rss feed and is viewable in readers. Feel free to follow, subscribe there. Comments are welcomed, loved and wanted. They lift my spirits and remind me that I'm not as isolated as I often feel. I'm in the process of importing my history. Working on March '09 through September '09.

Exciting news in my world....... I auditioned for an amazing project call Listen To Your Mother. It is the first year for Spokane. I've been cast and will be reading a piece about my Motherhood on Mother's Day. May 8, 2011.  Excited, honored, humbled. If you are local, please consider coming to the show and listening to 12 amazing women share about their Motherhood. Listen to Your Mother Spokane

I am wanting to write my heart out, but can't find the zone. I'll be back, soon, with more. Trying to get back in the saddle. It's a little creaky.

With love and deep breaths~
Mindi
~Momcologist

*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

Posted via email from MindiTheMagnificent

www.46mommas.com
Coming to you LIVE from Spokane, Washington........ It's Chez Sacred Heart!

I tell you, post Stem Cell Transplant (Bone Marrow Transplant) is such a delicate dance. Not the kind where you gently shuffle your feet, but the kind that has seriously complicated steps, with stretches of simple swaying, bridges of intense two step, accompanied by music that has never been written or heard before. Music written solely by Gregory's body, with no indication of tempo, key, transitions. Not until they are actually played and hit your eardrum.

Wednesday he woke at 4AM with serious belly issues. Moaning and groaning. No heaving. Some Zofran and all was well. Until 9AM where he complained of a big sore throat. Wednesday night his temp started to go up. By 8:00ish it hit the not-so-magical number of 100.5. Phone call to oncologist. Made the requisite trip to the ER for blood cultures, stress dose of hydrocortisone and IV antibiotics. When we got there his temp was 101.1. He was dosed with Tylenol, an hour later, his temp was 101.4. His temp went up through Tylenol. He also did not look to swell. That droopy eyed, "I don't feel well." look. We were admitted for the night. He crashed in the ER at around midnight, we were settled in our room in the unit at 1:30ish. From 2:00 on, the poor kid woke every 30-60 minutes with inconsolable sobbing. He wasn't able to tell me why, either. It did not sound like a hurting cry. It sounded like his high-dose steroid emotional cry. Sad and filled with grief. Chest racking sobs, that I could do nothing for, except be with him and wait it out. Every 30-60 minutes. Little dude finally woke up this morning and told me that he was crying because his throat hurt. Yet, his throat looks good. What we can see, that is.

Doc decided he should be observed through Thursday and Thursday night.

So. Here I sit. He is sleeping soundly in the bed and I am tap-tap-taping away at the couch/bed. (We are so spoiled at this hospital.)

This is our first real "sick" admit since transplant. 20 months ago. He's had a few admits for blood infections (septic), an admit to change his Hickman to a port, 8 weeks last winter for cGVH. A 14 hour stay a few weeks back for IV Zofran and IV fluids ( he had some stomach bug that wreaked havoc on his gut. I am NOT a fan of dry heaving) Several ER visits for fevers that did not result in admits.

Gregory has done VERY well through transplant. It is so much easier to recognize that in hind sight. Experiencing it is another story.

The thing that really gets to me is the constant vigilance. Watching him like a hawk for any signs of infection, any signs of late effects, remembering to keep the things he does have issues with monitored (cataracts, lung function, gvh, osteopenia). Then there is the medications and overnight fluids. With the vigilance come keeping an eye out for sickness around us. Any inkling of something going around and my awareness gets ramped up a couple notches. I truly believe that my vigilance has kept him as "healthy" as he has been these last 20 months. During our intake to the unit last night, the charge nurse asked the routine question "Has Gregory ever had MRSA or VRE?" My response has always been a very joyful "NO!" She look at me and asked "How did you get through transplant without either?" There was another nurse in the room who looked at me and said, "But he's had C-Diff, right?". Once more a very enthusiastic "NOPE!" They both were baffled that Gregory had not contracted any of these during his Odyssey.

This got me to thinking that Gregory has had a very "Middle of the road" transplant experience. Plenty of heavy duty events, with plenty of things we just have not experienced. When it comes to BMT, the whole thing is one huge Crap Shoot. Forever. For the rest of Gregory's life.

Then reality likes to slap me in the face. Another JMML kiddo died this week. Don't know most of the story, suffice it to say, we have lost another little soul. Another JMML kiddo was admitted this week for his second bone marrow transplant. Yet another JMML kiddo has evidence of disease with a very complicated treatment history that I  have yet to read. The reason this is so heart breaking to me, is simply due to the numbers game. 24-50 cases of JMML are diagnosed, in the US, every year. Those 25-50 cases have a wide range of genetic markers. Wide ranges of presentation, ages of the kiddos and treatment response. Treating JMML is far from "A sure thing". Continued research in Stem Cell Transplant will help to ease this "after" life that ALL transplant patients live with.

Then........ I'm reminded what a PRIVILEGE it is/was for us to be treated at Seattle Cancer Care Alliance, the patient care side of the Fred Hutchinson Cancer Research Center and Seattle Children's. This is where bone marrow transplants were pioneered. This is where the premier Long Term Follow Up program is for transplant patients. This is where the cGVH Gurus are grown. THIS is our treatment center, simply due to location. The respect, honor and love that I have for these centers and their employees knows no bounds. Their work, over the last 40 years, has allowed Gregory to have the quality of LIFE that he does have. Yes, some of it is just plain luck. I still am filled with gratitude to be able to call these places Home.

Part of all these mushy thoughts began on Tuesday. Larry came home from work and asked Gregory what kind of cake and ice cream he would like for Friday. Out of Larry's line of sight, I'm giving him this "What are you talking about? We have nothing to celebrate?" look. Thinking he's REALLY lost his marbles. Then it dawns on me.

Daddy remembered. Daddy wants to celebrate and honor. Daddy wants to love.

Friday, February 25, 2011 is Gregory's second Diagnosiversary.

Provided we get out of the Grey Bar Hotel tomorrow, of which I'm certain we will *crosses fingers*, we will be celebrating two years of survivorship. I wallowed in sadness last year. Deeply wallowed. I will not be doing that this year. While it won't be all "Balloons, sparklers and whistles", it will have little to no sadness. We will celebrate being together and living this really difficult and beautiful thing called LIFE.

With a Schizophrenic Heart,
~Mindi
Momcologist

*Won't you help me fund a cure? Do it now. Make a donation to fund Childhood Cancer Research. We need more transplant patients like Gregory.

www.46mommas.com/mindifinch

Awareness=>Funding=>Research=>Cures

It's THAT simple.

I Joined - Have you?

www.46mommas.com

Too much in my head and heart, these days.

Mandala ~ Peace
Hi, out there.  Been having a hard time getting myself to sit in front of this keyboard.

There has been much to say, but my ability to share has been lacking. I've been stuck in this really nasty head space. Trying to live each day in our reality and survive being out in yours. It is a painful experience. Staring into your eyes, seeing the desire for everything to be OK. Wondering if you are going to run screaming in the other direction if I open my mouth and talk about our experience and the realities of childhood cancer. I feel so gun shy. Wanting to purge myself out to you, knowing that is not the thing you want me to do. Wanting somewhere to "put" everything that races around my brain. Not ready, or able, to live peacefully with everything we have experienced in the last nearly two years. Knowing we still have tomorrow ahead of us, not knowing what it will bring. Feeling incredibly insecure about everything.

We started counseling in late December. Curtis and AnnMarie are seeing their counselors every two weeks and they are making baby steps. Things are much better around here. December was hard. The holidays have always been hard for me, though. Expectations. *shiver*

Gregory has had several visits to the ER for fevers. Continues to be immune compromised. His health is so complex. He had an eye exam and lung CT in December. His cataracts remain stable, his vision correction has worsened as has his astigmatism. His lung CT remains clear, yet his oxygen saturation has not improved. He had his first appointment with the endocrinologist. He will need growth hormone, but we are waiting until summer to really start that process.

He has been tapered down to 1/2 a mg/kg of Prednisone. He is now at 7mg of prednisone, every other day, with hydrocortisone on off pred days for his adenal insufficiency. This last weekend he had an evening of dry heaving with diarrhea. It landed us in the hospital for overnight IV fluids and IV Zofran. His gut has been sensitive all week with loose stools.  Just taking it easy, keeping him out of school and keeping a close eye on it. He did have IVIgG on Monday. Continuing to keep what immune system he does have, as strong as it can be. Luckily we have escaped any really nasty illnesses for him, so far, this season. *fingers crossed*

As twisted as this may sound, the things that keep me going are fellow childhood cancer families. Raising awareness, raising funds for childhood cancer research and offering support. These families are my circle of security. I don't feel I  need to excuse my lack of brain function. My need to be involved. There continues to be HARD news for fellow families. Relapse, illness, dying, death. Families struggling with PTSD.

There is no "end", no "done" with childhood cancer. Well, there is one. Death. I don't consider that a "done", though. Living with death is one of the hardest things to experience. Witnessing it. Over and over and over.

There is no sunshine in my words, today. Just a feeling of being constantly weighted down. I feel like there is an anvil on chains, strapped around my shoulders and hanging to my knees. Constantly keeping my shoulders bowed and my head turned towards the ground. Not knowing, from moment to moment, if Gregory is going to contract a common cold that will throw us back in the hospital. Not knowing if Gregory will be exposed to Chicken Pox. Not knowing if his GVH is going to flare and trigger weeks of trying to get back on top of it, again. It is really hard to see the light. The light that is Gregory living, today. I am still grieving. Trying to navigate the questions in a real, truthful way. I  have this wretched habit of speaking things as they are. I cannot gloss over the realities and bask in the beauty of Gregory still living. Selfish? Possibly. Real? Yes. I feel chained. Tied down. Held prisoner by his immune system. Yes, a small price to pay for his life. Still worthy of recognizing as a loss.

Meanwhile..... Did you know I'm raising funds for Childhood Cancer Research? Yes, I am. I am shaving my head with the 46 Mommas. Raising funds for St Baldrick's. While it is commonly said that we are raising funds to find a cure, I  don't see it as a cure. I am raising funds to for better treatments for our kiddos. Not my kiddo, his cancer treatment is done (hopefully). I am raising funds for YOUR kiddos, your kids kids. My greatest fear (well, one of several) for Gregory is a secondary cancer, such as AML, or Myelodysplastic Sydrome. Gregory's treatment was so intense that his is a real possibility. The late effects that our kids live with are enormous. Sterility is another big one. As is heart failure. The list goes on and on and on.

I think you can help me, help St Baldrick's fund Childhood Cancer Research. My fundraising page is at St Baldricks: Mindi Finch
No donation is too small or too big. St Baldrick's is the second largest funder of Childhood Cancer Research, second only to the government. Love this foundation, love, love, love. If you are interested in keeping up with the movers and the shakers of the Childhood Cancer world, please check out People Against Childhood Cancer (PAC2). This is where 46 Mommas began.

I wish I  had more to say, at least that I felt comfortable sharing. My heart and my head are all twisty. Holding each and every one of you in my heart, surrounded in light and cradled in love.

~Mindi
Momcologist

Hah! Back so soon?

www.46mommas.com
First things first......  Today we celebrate our First Born.  Twelve years ago, today, Curtis came bounding into our lives.  Forever changing who I am.  He is my oldest, my first born, my dream come true.  Happy Birthday, kid.  I love you more than you could ever imagine.
Curtis ~ Thanksgiving
Getting pictures of this kid, these days, is nearly impossible.  This is the best that I can find!  Turkey hates the camera.

Secondly......  I am angry.  So mad and pissed off.  Gregory had his six month eye exam today.  We are monitoring his cataracts every six months.  The records have not been received from Seattle Children's, yet, so the doc couldn't compare the progression.  The records are in process and should be received, soon.  The part that I'm angry about, came as a uncomfortable surprise.  Gregory's correction has changed slightly and his astigmatism has worsened dramatically.  I was not prepared to hear this news.  It was not expected.  He needs new lenses for his glasses.  This change could be his normal progression of vision, but the doc thinks it's most likely due to his cataracts.  Cataracts change the shape of the eye, hence the change in vision.  I don't know enough about cataracts to have anticipated this change.  As much as an information gatherer I am, I can't learn it all or be ready for it.  I guess this is the root of it.  While this is a minor thing, in the big picture, it's just another aspect of Gregory's treatment and something else I need to be vigilant about.  I mean come on!  Who goes to the eye doctor every six months!  Then.... if you do, who has to have their lenses changed every six months!!!!!  At the age of 5!  Just another thing heaped onto Gregory's health and life.  A small thing...... I  know, but..... another thing.
I'm also quite tired of being a minority.  Whenever Gregory is seen, outside of Seattle Children's and Seattle Cancer  Care Alliance, his medical history is alarming to people.  People in the medical field.  Granted, Childhood Cancer is not seen too often and Pediatric Bone Marrow Transplants, even less.  I'm just asking that the medical professionals quite reacting with shock and disbelief while discussing his history and current status.  Today's example was the tech who did his initial eye evaluation.  When discussing his cataracts, after I had told her he was a BMT patient, she assumed his cataracts were congenital (from birth), when I told her no, they were treatment and steroid induced, she did that little, widening of the eye balls, slight jaw drop and a jerk back of the head.  It was a noticeable reaction.  This is not the first, nor the last, just the most recent.  I realize Gregory is in a unique situation.  I work daily at making some sort of peace with his health.  These kinds of reactions are a reminder that he is far from normal.  It's a natural reaction, but I would like to see a little more professionalism.  If you have questions, please do not hesitate to ask.  I am an open book when it comes to frrank and honest communication.  It's the only way to learn.  I know this is a traumatic thing to think about, I know I've had nearly two years to be "comfortable" with this, I know that YOU are just now learning about Gregory and maybe this is even your first exposure to Childhood Cancer and Bone Marrow Transplant.  Still, we are more than the diagnosis and treatment.  We are more than the symptoms and late effects.  We have feelings, eyes, ears and memories.  Can you tell this hit a soft spot for me , today?

Today I also was given information regarding the state of Arizona.  Their legislature just recently ended Medicaid coverage of Bone Marrow, liver, kidney and some heart transplants.  Condemning people to death, based on false information.  The story can be found here.  Please take the time to watch the video.  In the meantime I will be researching what kind of action can be taken to help the state of Arizona's residents.   Regardless of your political views, this is devastating news.  Please don't respond with finger pointing.  There will always be finger pointing, someone blaming someone else and vice versa.   This gets us nowhere.  The best course of action is to get informed, share the information and act.  Don't quite know what the action part will be, but I will find it.

Thinking about all of you, out there.  Holding you close, surrounding you in love.  'til later.  Gotta jet!

~Mindi
Momcologist

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