MindiTheMagnificent's Open Salon Blog

NYC, DKMS Gala & Gregory's Bone Marrow Donor ~ Part II

Sun, 29 Apr 2012 16:04:37 -0400

Even just though just a few days have passed, I am having a hard time remembering the details. I should have been writing as I went, but there was just too much going on and I wanted to 'live in the moment' as much as humanly possible.

We arrived at the airport and had to wait for the ticket counter to open. Yep. We were too early. What? You think we were excited to get going? Once the window opened we were told that we could check in at the kiosk. Cool. Done. Tickets printed. But, wait.... my ticket says Mindi Finch. Crap. Tickets must match your ID. My ID is under Malinda Finch. Back to ticket counter. Tell guy the deal. Guy's response: "Ugh. This is a pain to fix." Amazingly the fellow to his right was a 'I know all the tricks.' whiz. After some lengthy keyboard tapping my ticket was corrected and re-issued. *whew* Thankfully we live in a small city and The OffSpring had their first TSA experience in a nearly empty airport. Of note: TSA employees have zip for personality. Zero. Zilch. Nada. Don't know if they train them to be that way or they intentionally hire the personality-less population. We headed to the gate and sat to wait some more. All three of them were bouncing back and forth between the windows and our seats. Checking out the planes, offering all kinds of conjecture about the planes in front of them. We boarded our plane and we were split into three separate rows. At first I was bummed out by this, but it turned out to be a GREAT thing. AnnMarie had a window seat, Gregory had a window seat with me beside him and Curtis was in front of us with a window seat. Not sure if DKMS planned it that way, but all three kids got a window seat for their first airplane ride and there was not one ounce of arguing.

*A note on pictures. I don't have that many. Those that I have are either grainy from my phone or hurried from my camera. Juggling luggage, personal items, three kids and new experiences resulted in my inability to capture much of anything. No big deal, really. Except I can't download the images in my head to you. what I do have will have to suffice. Also? Curtis is 13yo and extremely teenagery when it comes to the camera. He refuses to let me take his picture.

How's your flight, Gregory?

Sister?

Curtis.

The flying part was OK for them. Not too terribly exciting. I will say that Curtis had the luck of the draw flying into NYC. He was the only one with a window seat and had the view of Manhattan as we flew in. Turkey. Our layover was Minneapolis and we had a scant 30 minutes to get to our next gate. That airport is HUGE! Not what I expected. They did great and we made our flight. We discovered EARLY that Curtis' tree trunk legs out flank Gregory's tooth pick legs by a very large margin. Everyone along the way to our gate knew Curtis' name. "Curtis, would you slow down.", "Curtis, wait.", "Curtis, be respectful to your brother." etc.....

We landed at LaGuardia and our adventure really began. We made our way to baggage claim and standing among the other drivers, was a man dressed in black holding a sign reading "FINCH". Talk about surreal. He and Curtis got our luggage, loaded it into the car and off we went to Manhattan. It was 3:00 in the afternoon, local time. The traffic was pretty thin and we made great time. Our home for the next several days was Tribeca at the Tribeca Grand Hotel. Let me tell you, this hotel was very unassuming, yet extremely posh. Which I guess would be the truest from of luxury. It wasn't until our stay was nearly over that I realized why the lighting was so dim. Out of respect to the privacy of it's guests. Yes, it was that kind of hotel and neighborhood. Which set my anxiety soaring. Aside from keeping Gregory healthy during this trip, my two biggest worries were keeping The OffSpring safe and fed.

We were checked in, our luggage taken to our rooms. Yes, rooms. We had a one bedroom suite and the adjoining two bed room. Plenty of room for all of us. They had also asked us if we wanted a goldfish in our room. Yes. A goldfish. We have goldfish at home and the OffSpring were tickled to have a friend in the rooms with us.

Our friend for a few days.

The OffSpring had heard that NYC was an extremely noisy city. They were worried that they would not be able to sleep over the noise from the street. Our hotel had that covered.

Pretty slick.

Part of our view from the two bed room. Crazy parking!

After we were settled, we headed out to find some grub and get our bearings. Not having any idea of where anything was, where it was safe to walk and what the area had to offer, we headed out to whole foods. I needed to know where a store was, in case I needed anything. As it turned out it was quite far from our hotel. After a long day of travel, AnnMarie and Gregory were spent. They were amazing troopers, though. We got what we needed and headed back. After dinner the OffSpring were ready to crash. They went down and I tried to sleep.

I couldn't. I don't think I've ever felt that kind of anxiety before. We had three more days ahead of us and I did not know anything. Just thinking about it now sends my heart racing. If the next few days were similar to getting to Whole Foods I was in trouble. We would manage, it just would be a challenge. Gregory has very little endurance and he still had a cough. His wellness is/was/forever will be my first priority. In the spirit of honesty and full disclosure I also need to add..... I had not had a cigarette since we left Spokane. Yes, I smoke. Can't seem to quit. I'll get there. Someday. I had hoped that I could abstain during this trip and then be done with the whole mess. Nope. My racing heart, churning stomach and confused brain just could not sleep. I snuck out the door, headed downstairs and had a smoke. Best decision I could have made. My mind quieted, my heart quit racing and I was able to realize that we would be OK. Don't judge me. Addiction is a beast, compounded by stress and anxiety. This is my reality.

Finally I fell asleep, all was well in our world. We were in NYC and getting ready to meet Gregory's live-saving bone marrow donor. Amazing things were about to happen.

Part III to come.

With an OPEN heart.

MindiTheMagnificent

~Momcologist

A view from the suite. That's the new WTC being built in the distance.

NYC, DKMS Gala & Gregory's Bone Marrow Donor ~ Part I

Sun, 29 Apr 2012 16:04:45 -0400

It's been so long since I've shared my words in this neck of the woods. This is too exciting not to share with you all...... love, love, love.

It's currently 11:15pm, the evening of Saturday, April 28. Daddy is sawing logs and The OffSpring are spending the night with Nana and Papa. My earbuds are in and Spotify is rolling. I'm about to write a story. A true story of adventure, fear, anxiety and over flowing love. With a rare ending. One few people experience and fewer still experience in the way that we have. There will be a lot of words. Are you ready? Let's go.

This past Tuesday, April 24, 2012, nearly in the middle of the night, my alarm went off at 2:30am. After only two and a half hours of restless sleep. I got myself ready, then at 3:00am went to rouse The OffSpring. AnnMarie's alarm went off and she bounded out of bed. "We're goin' to New York City!" Curtis came rambling up the stairs. Gregory slept through it all. At promptly 3:30am, Nana and Papa pulled up to the curb. Gregory woke enough to realize that the moment really had arrived. We loaded into the car, with grins, nervous laughter and butterflies in our bellies.

The kids and I were on our way to the airport, flying to NYC. This would be our first time to NYC and The OffSpring's first time on an airplane.

I had been hanging onto this trip since November of 2011. In October, while picking up AnnMarie from school, my phone rang and it was a 206 area code. Recognizing it was Gregory's treatment center in Seattle, I anxiously answered the phone. Wondering if they were going to tell me that our donor wanted us to know who she was. That's what it was. Kind of. Apparently Gregory's donor center wanted us to meet and do some media. They needed me to sign a release form before any plans or information could be shared. This was the phone call that I had been waiting for, ever since we received The Magical Phone Call on April 21, 2009, that we had a matched donor for Gregory's transplant. The form was sent, signed and sent back. Then another waiting game.

November 10, 2011, I received a phone call from Katharina Harf, COO of DKMS Americas. DKMS is the largest bone marrow donor center in the world. Their United States office is located in NYC. They hold an annual fundraising gala. 100% of the proceeds from this event go directly to getting potential donors swabbed and registered for potential matches. Every year at this event they highlight a donor/recipient meet. In order to preserve the authenticity of the meet, the donor and recipient need to remain anonymous to each other until the actual meet on stage, at the event. Katharina had called ask if Gregory and his donor would be the pair to meet for the DKMS gala in April of 2012. Of course I responded with an overwhelming 'YES!'. Aside from close friends and relatives, I have had to keep this under wraps. Not able to share openly what we were getting ready to do! Drove me absolutely crazy to not shout it from the roof tops. Over the next several weeks, I was introduced to the participating member of the DKMS and event planning team. It was decided that a video would be done to show at the gala, prior to our meet. DKMS contacted a local company Seven2 and a local production company ILF Media. They came out to our home and interviewed us on a bright sunny day in February.

Then the waiting really began. The plans were laid. DKMS took care of all the travel, hotel and transportation. All we had to do was show up at the airport in Spokane. The biggest concern, as we waited, was making sure that Gregory remained healthy enough to travel. With the gala being at the end of April, we still faced the reality that cold/flu season could strike and take away the possibility of Gregory being healthy. Considering that his immune system is still not functioning at capacity, he is still receiving IVIgG every four weeks AND the avoidance of Chicken Pox that winter my anxiety over his health was sky high. This was an opportunity I was NOT about to miss. Yet, if Gregory was not well, we would not go. Period. Then there is the anxiety of traveling across the country, on my own, with all three of the kids. Not to mention that we would be in Manhattan. I knew that I could make it work, but wondering and worrying over how we would navigate this grand adventure tore at my gut, brain and heart. I had never been to NYC. Taking the OffSpring somewhere I had been to before would have been so much easier. Not knowing what was ahead was daunting to consider. The days, weeks and months plodded by.

All of a sudden it was 14 sleeps 'til NYC. Then 10 sleeps. Out of nowhere it was 1 sleep 'til NYC.

We are ready! <3

Part II

My heart is overflowing.

MindiTheMagnificent

~Momcologist

Life In Pictures

Fri, 9 Sep 2011 03:09:56 -0400

There is so much to share. I have been struggling with sitting before this screen. Needing to be present for so many different things, yet wanting to record every last bit.

This has been an amazing summer. Gregory has successfully (so far) discontinued his steroids and Rapamune. He is no longer on any immune suppressant medications. Crossing my fingers that we have a long, boring fall/winter. He is receiving IVIgG every four weeks. I have a feeling this may end up being every three weeks once cold/flu season hits. We will see.

Gregory ran through the sprinklers for the first time in three years:

Gregory went swimming for the first time in three years:

Gregory's Make-A-Wish was granted:

I met an amazing group of Yoga practitioners. We have partnered and are raising awareness and funds for childhood cancer for 46 Mommas / St Baldrick's with a yoga event in Spokane, WA.

Yoga People Care....About Childhood Cancer

I leave Tuesday, September 20th for Washington, DC. I'm going with a head full of hair and will return with a shiny bald noggin.

I have photo documentation that Daddy does smile and is pretty stinkin' nice to look at!

I made a dress for AnnMarie.

Taking moments to catch up with family and getting myself on the other side of the camera:

Still trying to catch Curtis in a moment when he will let me take his picture (This is what you get, kid!):

Mostly? Plenty of this:

Tucked away in our little circle of security. Still head shy. Still not ready or able to 're-join' society. Don't know if I every will. I do know that whatever I do or wherever I go it will be with purpose, intent and meaning.

46 Mommas is a culmination of that idea. Not only will we be shaving, on stage, during rush hour at Union Station, Washington, DC, but we will be making visits to Capital Hill on Thursday the 22nd. We will be visiting with members of key committees that support and fund childhood cancer legislation. We will be visiting with members and staffers from the pediatric cancer caucus.

We will be filming a Let's CONQUER PSA with/for St Baldrick's.

We will be attending the Pediatric Cancer Caucus Summit on Friday the 23rd.

People Against Childhood Cancer (PAC2) is holding a collaborative workshop for the childhood cancer community on Thursday, September 22.

The childhood cancer community is BRINGING IT to DC. We will be turning the town GOLD! So very proud, honored and humbled to be a part of this week of events.

We still need you, though. "Many hands make light work." The 46 Mommas have issued a $10 Challenge. Via our FaceBook fan page:

"Take our 2-Weeks-to-go-$10-challenge! Help us get closer to our goal of $1Million for St. Baldrick's. If each 1 of our fans donates $10 we'll be $95,630 closer to helping fund lifelong cures! Can you skip 2 coffees this week? Pass on a trip to the movies? Or brown bag lunch? Donate the $10 you save to our event (or the Momma of your choice) to help CONQUER kids' cancer!"

To take this challenge, you can donate on my noggin here: http://www.46mommas.com/mindifinch/

To view what we have raised for our campaign, so far: http://www.stbaldricks.org/events/46mommas/

I want to thank each and every one of you who have donated, so far. While it may not seem like much, I know that you have opened your heart to a world no one really wants to know anything about. I thank you for the piece of your heart that you have offered to all kids. If you've been meaning to make a donation and can make one before the shave, it would help me get that much closer to my goal of $5,000.

If you would prefer to mail a donation in:

St Baldrick's Foundation

1333 S. Mayflower Avenue, Suite 400,

Monrovia, CA 91016

Donation form with my name and participant ID already completed.

While childhood cancer still looms very large in our life, Gregory has had an outstanding summer. EVERY child deserves outstanding summers. Lots and lots of them.

With love, love, love.......for YOU!

Mindi

~Momcologist

P.S.! Almost forgot! I turned the big Four-Tee on Sunday, September 4. Been looking forward to this Belly Button Day. Fiercely. What a better way to celebrate this amazing decade of life than with 46 Mommas Shave For The Brave.

Happy Birrrrthday to Youuuu,
Happy Birrrrthday to Youuuu,
Happy Birrrrthday Dear Mindi,
Happy Birrrrthday to Youuuu!

A few years back, not so long ago, heaven and earth erupted into a major celebration with the news of your impending adventure into this very time and space. You see, someone like Mindi Finch doesn't come along all that often. In fact, there's never been a single one like you, nor is there ever ANY possibility that another will come again. You're an Angel among us. Someone, whose eyes see what no others will EVER see, whose ears hear what no others will EVER hear, and whose perspective and feelings will NEVER, ever be duplicated. Without YOU, the Universe, and ALL THAT IS, would be sadly less than it is.

Quite simply:

You're the kind of person, Mindi,
Who's hard to forget,
A one-in-a-million
To the people you've met.
Your friends are as varied
As the places you go,
And they all want to tell you
In case you don't know:
That you make a big difference
In the lives that you touch,
By taking so little
And giving so much!

Mindi, you are so AWESOME! For your birthday, friends and angels from every corner of the Universe, including buddies you didn't know you had, will be with you to wish you the HAPPIEST of days and an exciting new year in time and space. You won't be alone!

HAPPY BIRTHDAY, Mindi!

Mike Dooley
Orlando, Florida, USA

PS - Mindi, this is going to be YOUR year!!

© TUT ®

46 Mommas National Press Release

Thu, 11 Aug 2011 01:08:12 -0400

Via: http://46mommas.com/

46 Mommas to Shave Their Heads to Raise Awareness for Childhood Cancer

Download this press release in PDF format.

Washington, DC: “Your child has cancer.” Every week day, 46 families in the United States hear these words. This September, during National Childhood Cancer Awareness Month, 46 Mommasare gathering together in unity to shave their heads to raise awareness and funds for childhood cancer research for the St. Baldrick's Foundation. The shaving event will take place in Washington, DC.

In 2010, our inaugural team took the name 46 Mommas Shave for the Brave and established a fundraising goal of $1 million for The St. Baldrick's Foundation.

The number 46 is important to the Mommas. It represents the number of children diagnosed with cancer every week day in the United States. Statistically, 20-25% of these children will not survive¹. For certain types of childhood cancer, the numbers are more dismal. For example, a cure remains elusive for kids with DIPG, a rare brain cancer with less than 10% surviving 18 months after diagnosis². An even smaller percent will live five years, the standard measure of survival for cancer patients. Awareness is the key, as it brings much needed funding. Approximately 4% of the National Cancer Institute’s budget is dedicated to childhood cancers³ and only $5 million of the $150 million in funding promised from the Caroline Pryce Walker Conquer Childhood Cancer Act has been appropriated. The lack of funding is a large reason so few breakthroughs have been made for childhood cancers compared to adult cancers.

Mission Statement:

We ARE 46 Mommas on a mission to raise awareness, raise funds for research and inspire others to help fund a cure for childhood cancer.

Each year a new class of 46 Mommas is inducted into the cause to empower and engage mothers of children with cancer. The number 46 is significant. On average, each weekday, 46 families receive the news that their child has cancer. Through increasing awareness of childhood cancer and raising funds for childhood cancer research by shaving our heads, we hope to one day be a group that no longer needs to exist.

Awareness=>Funding=>Research=>CURES

Our goals:

Raise $1 million for St. Baldrick’s Foundation's childhood cancer research programs
Hold an annual head shaving event, uniting cancer mommas and their families, to help raise these research funds.
Increase awareness of key childhood cancer issues in our local communities
Advocate to increase funding, both nationally and locally, for childhood cancer specific issues
Collaborate with other childhood cancer organizations to help produce a stronger, united childhood cancer community.

About St. Baldrick's Foundation

St. Baldrick’s Foundation is the world’s largest volunteer driven fundraising program for childhood cancer research. The St. Baldrick’s Foundation currently funds more in childhood cancer research grants than any organization except the U.S. government. St. Baldrick’s headshaving events are the fastest growing volunteer-driven fundraising opportunity for childhood cancer research. To learn more visitwww.StBaldricks.org.

###

For event information about 46 Mommas Shave for the Brave, contact: info@46mommas.com.

For press information about 46 Mommas Shave for the Brave, contact Ivory Zorich, Allied Integrated Marketing, 202.742.8750, izorich@alliedim.com.

46 Mommas Information

Website: www.46mommas.com
Team Page: http://www.stbaldricks.org/events/46mommas2011
Facebook: http://www.facebook.com/46Mommas
Twitter: @46Mommas (http://twitter.com/46Mommas)

St. Baldrick’s Media Area: http://www.stbaldricks.org/media-and-photos/

1 http://www.pcfweb.org/facts.php - 75-80% of pediatric cancer patients survive (Pediatric Cancer Foundation)

2 http://www.cancer.gov/cancertopics/pdq/treatment/child-brain-stem-glioma/HealthProfessional/page5 - More than 90% of DIPG sufferers die within 18 months (National Cancer Institute)

3 http://www.cancer.gov/aboutnci/servingpeople/snapshots/pediatric.pdf - $189.8 million in funding out of $4.81 billion in funding - http://www.cancer.gov/cancertopics/factsheet/NCI/research-funding

Long Term Follow Up. Number 2!

Fri, 8 Jul 2011 23:07:45 -0400

“Writing is a socially acceptable form of schizophrenia.” —E.L. Doctorow

Boy am I feeling that, right now. So much has happened over the last several weeks. So much to process. This is what happens when I need to write, don't feel like writing, avoid writing....then it piles up behind each other, clogging every other aspect of my life. I can literally feel the weight of these words on my chest and shoulders. Much of what I need to share is AWESOME...... others are just plain complex and unknown. This is going to be long. Please hang in there, there is so much to share.

Gregory and I left for his annual Long Term Follow Up (LTFU) appointment on Sunday, June 19. We received the call on Saturday that there was room for us at the Ronald McDonald House. Cannot tell you how excited I was to get that call. Last year we had to stay at a hotel and it was NOT fun. My love for RMHC is deep. Thank you to each and every one of you who supportRMHC.

Gregory and I headed out of town on Sunday, drove across this amazing state and landed at RonDon around 6:00 that night. Returning to Seattle this year was completely different. There was an air of success. We are two years post transplant and any stranger, glancing at Gregory, would never know what has transpired.

We dropped our things in our new home and headed out the door to the grocery store next door,Metropolitan Market. Love this grocery store. We were browsing, soaking the familiarity, sharing memories (Yes, Gregory even has memories to share.) we rounded a corner and HELLO! we ran into the doc that was on staff for Gregory's actual transplant, Dr Manley. Of course I recognized him immediately. I stood there and just stared at him, with this big goofy grin on my face. Gregory was strolling along at my side. I finally told him who Gregory was and he lit up. Then he got "that look". The look that medical professionals get when they haven't seen you for a while and suddenly see you in a medical facility. That Look that is guarding them from the potential bad news that might be dropping from your lips. That Look that wants to be joyful in seeing you/your child, knowing all too well, that frequently, a visit back after an extended period of time means that something bad has happened. Ex... Relapse. Secondary Cancer. Except....

I didn't catch it. Not that time. I let him know we were here for Gregory's LTFU, he breathed a visible sigh of relief and the reunion could begin in earnest with joy. The time that Dr Manley spent with us was his last rotation on BMT service. After that, he went to "regular" Hem/Onc attending. He is especially precious to us. Yes, there is also a heafty helping of Doctor Crush on my part. I'm not ashamed to admit that he makes my heart pitter-pat. Running into him, at the grocery store, as soon as we landed in Seattle was such an amazing moment. Dr M got to see Gregory... happy, functioning, healing and surviving. BMT docs don't often get that opportunity. It was a fun reunion. We returned to RonDon, fixed a quick dinner, then re-acquainted ourselves with the place. Gregory was in seventh heaven. He scurried and scampered around like a kid in a candy store. Our last trip to RonDon was for/during transplant. This time he was able to enjoy every last ounce of what they have to offer families and he soaked it up like a giant sea sponge. It filled me with delight to see him enjoying himself so much.

We were up early on Monday to begin our first day at SCCA. This feeling of joy continued as we pulled into the parking garage. We rode the elevator up to the main floor and entered the lab waiting area. THIS is where it changed. SCCA is the patient care clinic for the Fred Hutchinson Cancer Research Center. If you are a pediatric cancer patient, that does not require a Bone Marrow Transplant, you report to clinic at SCCA at Seattle Children's Hospital. BMT pediatric patients go to the main SCCA clinic, at The Hutch campus. SCCA at The Hutch is for adults. Six floors of nothing but adult cancer treatment. Except for the small minority of pediatric BMT patients. Gregory is an anomaly at that place. There was delight on the faces of the fellow patients/families at seeing Gregory. Initially. Then they realize that he is the patient. The expressions change. Worry, concern, compassion, fear, understanding.... many of them cannot look me in the eye. The questions in their eyes hurt too much. I had this strong desire to holler to the room..... "He's two years post transplant and doing WELL!" Instead, I do my thing, keeping Gregory present and happy, ignoring their pleading eyes, soaking up the wonderment of this precious child that is surviving.

Monday we had:

Finance

Blood Draw

Nurse Visit

PA/Doc Visit (We met with Natalie Riotto, PA-C & Dr Ann Woolfrey)

Pharmacy

Nutrition

During the first day of LTFU, we go over everything that has transpired in the last 12 months. whew Then we go over his list of appointments for the week and decide if anything needs to be removed or added. It was decided that his scheduled Pulmonary Function Tests needed to be cancelled. He is just too small to do these tests and get accurate results. Instead, we added a chest x-ray and a high resolution CT with sedation.

We left clinic, did some REAL grocery shopping and returned to RonDon. That night there was a family meal. These meals are amazing. Volunteers come in, from various organizations, and prepare meals for the families staying at RonDon. This is also the first time Gregory has been able to participate in these meals. He was tickled. We had meals every night. The second night I asked Gregory if he wanted to go down and see what was for dinner... he said: "We are having ANOTHER FEAST! Eeeeeeeeee!" We also had entertainment Monday and Tuesday night. Monday night's entertainment was hilarious. For everyone. Devin Reynolds was his name. Seriously. If you are in the Seattle area and need comedic entertainment, this guy is fantastic. Once again, for all ages. Just enough of that adult innuendo that is above kids' heads to keep adults giggling in their seats. Gregory got to help with one of his tricks and wouldn't you know it, Devin made a rabbit appear. Wait for it. Here is comes. As soon as Devin lifted to cover off the pan containing the rabbit, in a raised voice I tell my child (and the rest of the room) "Gregory! Don't touch the rabbit!" Ugh! Yes, he is still immune compromised and I am anal retentive. Hey, it's boded well for us, so far. Keep reading, you'll understand soon. Gregory was, once again, filled with glee to to do this. Can you tell why I heart the RonDon so much. It is such a bright spot for us families.

Tuesday we had:

Physical & Occupational Therapy Exam

Dental Exam

Eye Exam

The PT/OT provider was AWESOMESAUCE! We were once again back to SCCA. Little did I know that they had recently brought in a PT/OT person just for peds. She was wonderful with Gregory. He had a blast while she evaluated him. Over all Gregory is doing great. He still has some tightness in his ankles, refuses to hop on one foot and insists on going down stairs one at a time. Meaning, down one step with both feet. Not one foot per step. Make sense? These are minuscule things that we are now working on and Gregory is fantastic at knowing he need to do these things and beaming with pride when he practices......"See Mommy!"

Dental was not a surprise. I must admit, brushing his teeth is really low on my priority list. Yet, it's been 2.5 years since he has had a dental cleaning. He cannot have one until he is free of immune suppressing medications. He has eight crowns and four caps on his teeth and they help to create gingivitis. Which Gregory has a healthy dose significant amount of.

We had to travel to Swedish for his eye exam. They were not able to get us in with Seattle Children's ophthalmology, which is where he is usually seen. This turned out to be a great thing. Gregory saw Dr Richard Bensinger. He was able to answer my question about cataracts, gave me some great information and is now in our back pocket should Gregory ever develop eye GVH. My question about cataracts was.... WHY do steroids cause cataracts? What is the physiological answer? He quite simply answered with: We don't know. Which is an A-O-K answer. So... we do not know why steroids cause cataracts, they just do.

Wednesday we reported to Seattle Children's for a DEXA scan and bone age x-ray. The DEXA scan looks at his bone density. With Gregory's prolonged usage of steroids, we monitor the density of his bones. Steroids also cause us to lose it. Gregory does have Osteopenia, but it has not progressed. whew

Early Thursday we reported, again, to Seattle Children's for his chest x-ray and High Resolution CT with sedation. On Wednesday night Gregory started with a wet cough. It was not productive, he did not have nasal secretions, he did have sneezing. It was too late to call Seattle Children's to talk about his sedation the next day, so we just proceeded as planned. He had his chest x-ray, then we went over to Nuclear Medicine. We had a chat with the anesthesiologist and it was decided that the risk of sedating him with any kind of respiratory symptoms was not worth proceeding with the CT. Gregory has had High Res CT's every six months for the last 18 months. Each one has yielded no results. Clear CT's every time. So we headed back to RonDon and hunkered down. Gregory was starting to feel run down and now that he had respiratory symptoms, he was on house arrest. Confined to our room. In order to protect the other families, if you have symptoms you are sequestered to your room. Which was OK. We both needed the rest.

When we were at Children's on Wednesday, we went to the Hem/Onc unit to visit and catch another of my favorite docs. Dr Lauri Burroughs was attending on several occasions during transplant stay. It was another opportunity for one of Gregory's docs to see him post transplant and doing well. We did get The Look from several of our previous nurses, yet this time I knew it was coming and quickly assured them that we were there just to visit during our LTFU. While watching the relief flood their faces. It was soul filling to see Lauri. For both of us. Not only are these doctors managing patient care, but they all have areas of research. They leave clinical practice and work in the lab, every month. Yes, I am in love with our treatment center. Fiercely.

Friday we had our conference to discuss the results of the weeks worth of tests. There was an additional lab draw added and we had to have that done first thing in the morning. When we returned in the afternoon to meet with Dr Woolfrey, we were pleasantly surprised to find that Dr Burroughs was covering the out-patient clinic. (Nothing against Dr Woolfrey, I just really, really like Dr B!)

So.....

Gregory remains 100% donor and no evidence of disease.

His cataracts remain. Plan: continue to monitor every six months.

His Osteopenia remains, no progression.

Chest X-Ray: clear

Bone Age ~ a little over 5 years.

Despite what I feel to be low counts, they are considered normal. Even though they are not in the 'normal' range. (Hematocrit, Platelets, White Count & ANC)

He has Iron deficiency. Which is weird. Transplant patients receive so many red cell transfusions that more often than not, they end up with iron overload. Gregory is now on a twice daily iron supplement.

Gregory has: Methemoglobinemia. Methemoglobin is an oxidized form of hemoglobin that has an increased affinity for oxygen, resulting in a reduced ability to release oxygen to tissues. Which is most likely why he has decreased oxygen saturation. This can be caused by Dapsone. We have discontinued his Dapsone and replaced it with Bactrim. SCCA recommended that we have a pulmonology consult to rule out any other causes for his decreased oxygen saturation, including a home Pulse Ox to spot monitor him and a sleep study. The reason Gregory is on Dapsone to begin with is that Bactrim suppressed his counts, immediately post transplant. The theory is that since he is so far out from transplant, this should not happen again. We will see at his next clinic visit on the 28th. Dapsone/Bactrim are antibiotics that we use as a prophylaxis to preventPneumocystis Pheumonia.

Gregory's immune system is not successfully reconstituting. From what I gather... Gregory is producing white cells. The cells that fight infections. What he is not making are antibodies. The cells that recognize what needs to be fought, then signal the white cells to fight. He has bee receiving IVIgG, since about three months post transplant, every time his level falls below 400. Which has equated to every 4-8 weeks. IgG are donor antibodies. It is separated from whole blood donations and comprised of antibodies from 1,000 different donors. We now have a plan in place for Gregory to receive IVIgG every four weeks. Keeping his level above 600. This also means that Gregory cannot be re-immunized. Not until he is making his own antibodies. We will continue this therapy until Gregory is able to sustain/increase his IgG level. Once that happens, we will discontinue IVIgG, wait three months, then re-check his immune status. sigh

We have been given the green light to discontinue his Sirolimus. Provided he does not have any GVH flares. Gregory will have his labs checked at his July 28 appointment and then we can simply STOP the sirolimus.

I'm sure I've left out several details. This is what I have from memory. Once I receive the LTFU packet of results from SCCA, it will refresh my memory and I can fill in the blanks. I do not know what the last three items mean in terms of being able to recover. The data review conferences happen so fast that I often can't formulate good questions until after I've walked out the door. I do have a list of questions for Dr J when we see her later this month. Gregory see his endocrinologist on July 14. It does sound like Growth Hormones may be off the table. squee Hopeful, but not holding on to that. We did learn that one of Gregory's chemos leaves him with a 30% chance of thyroid problems. The risk does not decrease as he ages. At any time it could crop up.

I have so much more to share, but it will have to wait for another entry. There is plenty here, anyway. Just getting this down is starting to lift my spirits. Releasing it to you and posterity. Stay tuned, though. I have such great things happening in our life.

MindiTheMagnificent's Open Salon Blog

NYC, DKMS Gala & Gregory's Bone Marrow Donor ~ Part II

NYC, DKMS Gala & Gregory's Bone Marrow Donor ~ Part I

Life In Pictures

46 Mommas National Press Release

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About St. Baldrick's Foundation

46 Mommas Information

Long Term Follow Up. Number 2!

“Writing is a socially acceptable form of schizophrenia.” —E.L. Doctorow

Monday we had:

Tuesday we had:

Wednesday we reported to Seattle Children's for a DEXA scan and bone age x-ray. The DEXA scan looks at his bone density. With Gregory's prolonged usage of steroids, we monitor the density of his bones. Steroids also cause us to lose it. Gregory does have Osteopenia, but it has not progressed. whew

So.....

I have so much more to share, but it will have to wait for another entry. There is plenty here, anyway. Just getting this down is starting to lift my spirits. Releasing it to you and posterity. Stay tuned, though. I have such great things happening in our life.

~Mindi

Momcologist

~Mindi

Momcologist