28 More Days of LIFE.

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.
Here's one of The Eldest. Cannot believe how much he has grown up in the last two years. He's not a little kid, anymore.....He's also at that age (12) where getting him in front of a camera is IMPOSSIBLE!



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.



We are all set for Gregory's two year Post-Transplant follow-up. We leave for Seattle on Sunday, June 19. We will be spending the week in Seattle, with appointments all week. I am looking forward to seeing everyone and watching their expressions as they see how far he has come. While there is no guarantee for tomorrow, TODAY he is fantastic.


Precious. Simply precious.

Links I think YOU should see:

You know your a Momcologist when....... 

Two Bucks in honor of Gregory's Two Year Transplantiversary.

FaceBook page for my blog.

Fred Hutchinson Cancer Research Center article on research for statins and GVHD

Voice Tales ~ Great service for kiddos that just need to hear their loved ones voices.

That's about it, for now. 28 more days of Life. 824 days since diagnosis.
With love, love, love.....
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

Will Gregory go to school next year?

Gregory has been attending a small Waldorf inspired school. This year would have been his second year of Pre-School. Instead, it's his first. He has been attending two days a week, in the afternoon. Which has been perfect for where he is at. While he hasn't been able to attend regularly, it's been an amazing experience for him. The only reason he hasn't attended regularly is due to the cold/flu season. He attends school if he is well and his classmates are not sick.
Next year he will be in Kindergarten, five days a week. We will see how it goes. He is a very bright little munchkin. I'm not concerned about his academic performance. I'm just trying to get him more socialization with Non-Cancer kids. Being isolated for nearly two years really puts a damper on being able to socialize!
Each day, post his diagnosis day, that he walks this green planet is Gravy.

Ask me anything

I found your blog through 46 Mommas and love it. What was the "worst" part of the hospital experience? For you and Gregory?

Whew! The "worst" part of the hospital experience. I've been thinking about this and trying to find an answer. I would have to say that it would be the AMOUNT of time we have spent in the hospital. During that first year we spent roughly six months in-patient. The hardest visits were the ones that we were in and out within a week. Several of these types of visits. Whenever we were in-patient, I knew it was THE BEST place for Gregory to be. Yes, I have horror stories about fellow families and their experiences. Things I've witnessed that are forever etched in my memory.
Yes, sleeping in a chair, beside is a PITA!
Yes, having to use a communal bathroom was bad.
Yes, having ZERO privacy was ugly.
Gregory and I have had some of the most intimate moments while being in-patient. Snuggling up, hanging out, just being together. Those are the moments that pierce my memories. He and I have a bond like no other.
Hospital life...... I completely and totally surrendered to it. There was nothing I could do to alter that fact. It was our home-away-from-HomeHome. We took what creature comforts we could and truly made it our sanctuary. No sense in fighting the situation. When he was feeling OK, we always had a ball. Music blaring, laughs, silly dancing (albeit he was usually in my arms) and just being together.
We made the best out of a wretched situation. Still do.

Ask me anything

Be The Match - You Can Save A Life!

Today.

You cannot tell someone, in the pit of despair that it will get better. Well, you could. It wouldn't do you any good.

I've been in that pit of despair. I've dwelt there for entirely longer than I'd like to admit. So deep that I could not imagine ever seeing the sunshine again.

I am pragmatic enough to know that it is not gone forever. I am pragmatic enough to know that I will skirt it's edges for the rest of my life.

Today I am happy.

Today I have hope.

Today I give and RECEIVE love.

Today needs to be remembered. Today needs to be marked. Today needs to be immortalized.

There will be a tomorrow when I will need to be reminded of today.

Today the OffSpring are filled with joy. They are happy to be in each others company. They are asking and giving hugs to each other. They are playing together, exploring and imagining.

Today I feel plugged in. Not in an overloaded way. My power strip is only partially full, with a few spots left for power. It's not an overly stuffed strip, maxed out with extra power strips plugged in to accommodate the need for energy. I have reserves.

I have regained a sense of myself. I have reclaimed my strut. I feel like there is a light in my eyes, again. Not the deer in the headlights stare. I greet you with a grin, instead of my somber expression.

Today. It is mine.
Tomorrow? Only time will tell.
What matters is TODAY.

What is the most supportive/useful/non irritating way that a person can respond after hearing your story? When you told me I think I said "wow", "I am so sorry" and other non-helpful things - what from your perspective is the perfect response? -Elise

Thank you for asking this question Just the thought to ask it is priceless.
Our Odyssey is shocking, to say the least. There really is not a "good" response. My only request is that people challenge themselves to actually HEAR it. To let it sink in. To open themselves up and allow the reality to sink in. Instead of scurrying off to the land of "But he's OK and your done, right?" This is an experience ripe with opportunities for education. There never is a "done" with Childhood Cancer. Gregory may have no evidence of his original cancer, but it's an anvil that swings precariously over our lives. Just waiting to see if that last sinew of rope is going to snap. Very few people realize the lifelong impact of Childhood Cancer. It is A LOT of information to pack into a momentary, passing conversation. I do my best and hope that it is received in the manner in which it is offered. However it IS received and responded to is part of the process. Thank you, again. Love, love, love.....

Ask me anything

What's the most important thing you have learned these past two years?

This is a hard one to answer. I don't think I am far enough past it to really appreciate what I might have learned. I haven't gotten to the place that I am OK with learning at the expense of Gregory, the sibs and our family. I really don't think there is anything worth learning at their expense. Don't know if I will ever get there. Lesson, Reason & Gift are three of my most despised words, when it applies to Childhood Cancer.
I will admit to gaining PERSPECTIVE. Which is a double-edged sword. I appreciate the fact that the really simple things make me happy, I value them over everything. There are days when I would love to be able to escape into the land of ignorance. Just for a brief reprieve.
"Once you know better, you do better." is a hard thing to live up to. I now know better. It's the doing better, on a daily basis, that rattles my cage.

Ask me anything

I need your help. 

Where do you get your glasses? I love them!

Garage sales & thrift stores. They are vintage, not reproductions. I just take them to my local ShopKo and they send them off with my prescription! They do a fabulous job!

Ask me anything

I need your help.

Sunflowers are stunning, too.

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