Will you be the one?

If I could write half as well as you all think I can, there would still be a gap in my ability to express what these last two weeks have been like.

I've had all three kids with me.  We've spent a few nights at HomeHome with Daddy.  We have been learning to live together, again, and I've been catching up on the changes Curtis and AnnMarie have experienced over the last 15 months. 

Being in my home as been strange.  The normal routine of dishes, laundry and meals feels decadent.  My kitchen, my kitchen tools, my washer & dryer, my kids' rooms.......  Familiar, yet new.  Curtis and I gutted his bedroom last weekend.  It was an amazing thing to do together.  Reminders of his quirks.  He hates the sound of Velcro.  I had forgotten and went to remove something that had Velcro.  He stopped in his tracks, threw his hands over his ears and so incredibly calmly said:  "Mommy, please don't do that.  Velcro really hurts my ears."  The fact that he was able to calmly and rationally express this is mind blowing.  Once upon a time, something like this was accompanied by an outburst, a meltdown and a long time to recover.  Not only is he learning what sets him off, he's learning how to express what he needs and deal with having to feel it.  On our way down to his room, he also firmly told me we could ONLY use "natural light".  Which tells me that the artificial light hurts his eyes.  Curtis and I are coming to a place where he can tell me what he needs and I can accept it and see that his needs are met.  It's quite amazing to be here.  I have spent so many years worrying over Curtis.  He and I have had some difficult years.  Times when I've wondered if we would ever connect, again.  Times where I've wondered what his future holds for him.  Wondered if he would ever be able to live on his own, in society.  He has come a long way.  Larry and I try to keep an open dialogue with him.  Reminding him about things, opening up different lines of communication.  Reminding him that above all else, we love him and he is free to feel and express who he is.  I know we have some dicey years ahead of us, but I'm confident in the foundation that he and I are re-laying.  Can't tell you how good it feels.

AnnMarie is my hardest.  I'm beginning to think it's more her age, than who she is.  It also has much to do with my own baggage.  She is trying to find her place in the world and being pulled in many directions.  She wants to be part of everything.  I can feel her insecurity and I am at a loss as to how to help her.  The only thing I can do is love her and make sure she has a safe place to fall. 

I've also come to the realization that parenting elementary age kids is so challenging.  Seeing a glimpse of what Curtis is going through gives me hope.  I think I'm really going to dig parenting teenagers. 

There have been so many times that I have found myself in tears, lately.  Over the simplest of things.  Not because these are events that I didn't think would happen, but because the simplicity of them is so beautiful.  We have had a far easier time of it than I expected.  The fact that we are not HomeHome, yet has been good, too.  It has given the four of us a chance to work out the kinks at a place that Curtis and AnnMarie consider a fun getaway.  We are taking this step-by-step and all is good in our world.  Don't get me wrong, they are still siblings, I'm still The Mom.  We have our run-ins and frustrations, fighting and yelling.  I think we just get over it quicker, now.

Gregory has been doing great.  He had labs and IVIgG, yesterday.  His port drew perfectly.  He is starting to go longer between IVIgG infusions.  It used to be every four weeks, May 17 was his last IVIgG infusions.  I have a theory that he's gone longer because he's not using it.  It's no longer cold and flu season so he's able to hang onto it longer.  The true test will be how long he can go this fall/winter/spring.  We have been struggling with his Sirolimus levels for several weeks, now.  At least since his admit in May.  It goes down, we slowly increase his dose, then the levels begin to sky rocket so we decrease his dosage.  I have a feeling we will be increasing it this week.  He's been throwing some white cells that are usually not there when his levels are good.  Here's a question for anyone who might understand this......  Doc mentioned at his last appointment that he had some "GVH Cells" in his counts.  Eosinophills to be exact.  I've never heard these cells referred to as "GVH Cells" and was wondering if anyone out there had.  I do know he has been experiencing a small flare, lately.  Which would correspond with the presence of these cells.  We finally received our packet of paperwork from his follow-up in Seattle.  His prednisone taper was not included, I call and had one mailed.  He is due to taper the second week of August.  Just a tiny taper.  He is still at 1mg/Kg every other day.  Doc stated that we would not even consider tapering his pred until he has been GVH stable for some time.  Which is really good news.  Gregory begins his re-immunization on the 10th of August and I would prefer that he not be in the middle of a taper.  If he experiences side effects from the vaccinations, I'd like to have a clear picture that they are vaccination side effects and not a GVH flare from tapering his prednisone.  We are still going in for weekly labs and every-other week exams.  If his Sirolimus would stabilize we would be able to start spreading these visits out, but........  *shrug*

We started the "health catch-up" craziness with Curtis and AnnMarie.  They had dental appointments this week and it's all good news.  AnnMarie has had a blackish/grayish spot on one of her front teeth, near the gum.  It looked really nasty and I was fearing the worst.  As it turned out, it was lots of pieces of HAIR!!!  The hygienist that cleaned her teeth had to get tweezers and carefully pull each hair out.  AnnMarie has a habit of chewing on her hair.  Can't tell you the relief I felt that it was JUST HAIR!  She also only has two small cavities.  No big deal!  Curtis only has one tiny cavity!!!  Curtis' "bigger" issue is the size of his teeth in relation to the size of his mouth.  He has giant, strong horse teeth.  We knew he would need braces and before Gregory was diagnosed it was a manageable thing.  He was supposed to get them last spring and there was not way this was going to happen.  Not to mention the cost.  Curtis' upper eye teeth are trying to come through his gum line.  there is just not enough room for them to descend into his gum line.  Several years ago, he had teeth that actually came in through the roof of his mouth, because there was no room in front.  We have been referred to a dentist that takes Curtis' medical coverage for Orthodontics.  It's case by case and based on need.  Curtis needs it, without a doubt.  This is something else that I am incredibly grateful for.  They also have eye exams, soon.  Curtis needs new glasses and I know AnnMarie will now need a pair.  Soon all five of us will be wearing spectacles.  

This is also the time of year when we (the childhood cancer community) start to gear up for September.  September is Childhood Cancer Awareness Month.  I don't have my fact sheets in front of me but here is one fact that sticks with me and is hard to swallow.....  For every $100.00 dollars donated to The American Cancer Society, only $00.70 goes to Childhood Cancer Research.  Yes, you read that correctly.  Seventy cents of every one hundred dollars.  If you want to make an impact on research for childhood cancer and simply want to donate funds, I recommend donating to St Baldricks.  We currently have an amazing group of women, 46 Mommas.  These women are Shaving For The Brave.  St Baldricks events, across the country, have raised over $20 million, this year so far.  St Baldricks is the largest contributor for childhood cancer research, second only to the US Government.  If you can, the 46 Mommas are shaving in September and would like your donations.  Why 46?  On average, 46 kids are diagnosed with Childhood Cancer, every day.

Why donate? 

• Anna was Cancer Free when she died.  She died from Chemo Toxicity
• Makiah had a liver transplant, her cancer invaded her new liver and is being sent home on Hospice.
• Cameron has had THREE Stem Cell Transplants for JMML and is now in the grips of SEVERE Acute Graft Versus Host
• Rhema has relapsed with DSRCT at the age of 13.  Just a short time after being found No Evidence of Disease.
• Anna & Maddie are siblings.  BOTH diagnosed with ALL.
• Tyler has relapsed Stage 4 Neuroblastoma. 

This is just a TINY list of why.  Death, relapse, late effects, GVHD.  Someone asked me why I focus on the ones who are struggling and don't focus on the ones who have a strong life and survival.  It's a valid question, but one that isn't answered with a very bitter taste in my mouth.  The side effects of today's childhood cancer treatments are horrific.  Yes, you could say that these kids (the ones that survive) have strong lives.  Yet, no.  Not really.  I'm not a scientist.  I'm just a momcologist who is wishing and dreaming of better treatments, survival rates and successful, healthy lives for the children of the generations to come.  Cancer will not go away on it's own.  We need to advocate, raise awareness, raise funds and show the movers and shakers that this has got to stop.  We need scientist who are willing and funded to think outside of the box.  Scientists who doggedly pursue research in immunology.  Scientists who are breaking the DNA code to obtain better matched Stem Cell donors to recipients.  Those of us who have lived this need help.  Will you be the one?

*stepping off my Soapbox.  Kinda*

Life is good, life is filled with love, life is bittersweet, life keeps plugging along.  We are facing it head on and embracing every moment.  'til later.  Gotta jet.

Posted via email from MindiTheMagnificent

The beginning of The First's.

I don't even know how to begin an entry, anymore.  These past few weeks have been filled with Busy.

Gregory had his surgery on the first.  They removed his Hickman central line and place a port.  They also replaced his G-Tube with a Mic-Key.  We stayed overnight for observation, at my request.  We probably could have gone home, but I did not want to risk it.  Gregory did FANTASTIC!!!  Overnight his oxygen levels did decline to the mid 80's, but I have a feeling that this is not unusual for him.  It could also be that the pain from his surgery caused him to take shallower breaths.  *shrug*  There really is no way of knowing, since I don't monitor is O2 at home.  His oxygen seems to be OK when we are at clinic.  He's been between 93 & 96 the last several weeks.  I still think he need a pulmonology consult, just to be on the safe side.  His counts the following week were outstanding.  He did suffer from a gut GVH flare this last week.  His appetite dropped to nearly nothing, a mild tummy ache and his classic GVH poo's.  He seems to be recovered from it, except his appetite is still pretty low.  I've been keeping him out of the sun and the heat.  His body is not ready to deal with the extreme heat, yet.  Over the fourth of July weekend he had his first "Real Bath" since February 2009.  He has been in seventh heaven. 

Fourth of July.......  Last year's fourth fell less than 30 days after Gregory's transplant.  He was soooooo sick.  This year we sat under blankets, under the stars, on the water and watched with fascination and awe.  Gregory was tickled pink with all the fireworks.  As we were sitting there I kept thinking back to last year.  Couldn't help shedding a tear or twelve.  It was absolute perfection. 

AnnMarie spent a few days with us, then we switched out for Curtis and now both of them are with us.  Having them around is an adjustment for all of us.  Balancing their individual needs, along with Gregory's.  I'd forgotten how exhausting it is to parent Curtis and how often AnnMarie gets left in the dust.  Not to mention the fact that both of them are maturing and maturing FAST.  I'm on FastFoward trying to catch up and figure out where they are at and what they need from me.  It's been good to have them both out here, despite the fact that it's been really cold the last few days.  The weather doesn't seem to stop AnnMarie, though.  I don't think it was above 75 today and she was in the water on several occasions.  She DID NOT get that from me.  

I'm also remembering what it means to be pulled in lots of different directions.  Gregory and I have had the luxury of doing this alone, setting our own course.  Gregory has benefited greatly from this.  His overall health is top notch (all things considered).  Now it's just a matter of getting back in the saddle.  I know I keep saying this, but we hope to be HomeHome, soon.  We are more than ready.

I also attended my first funeral for a child with Childhood Cancer.  Thankfully enough time has passed and my initial reaction has faded.  During the service the priest spoke of how God knows everything.  How we are put on this earth for a purpose and God won't take us until our mission is complete.  I was so angry with this priest and his words.  Not specifically at him, but at the notion that God knew about Anna's cancer and in God's eyes, it was OK.  That Anna's seven years could be considered a completed mission.  This doesn't represent all that triggered my anger.  I'm having troubles remembering his words.  Thankfully!  The message that I received was that it was OK that Anna died.  B.S.  I understand that this is what some people need to hear, I understand that people THINK this is was some people need to hear.  I understand that I have the right to believe what I want.  I just felt that the words were so disrespectful to Anna and her family.  There is a huge gap in their family now and absolutely no way to close it.  I don't care how much faith you have, the death of your own child will NEVER be OK.  

Whew.  *breathe* 

Gregory has been experiencing all kinds of new "firsts" this month.  After our one year follow-up in Seattle, I've gradually been cutting loose the ties that bound us.  Just to name a few:  We had fresh flowers in the house.  AnnMarie and Gregory picked Clover flowers from the yard and we had them in the kitchen. ~  Gregory got to have hand-scooped ice cream from The Scoop. ~  Gregory had fountain soda. ~  Gregory had soft serve ice cream.  ~  I did not have to steam his deli meat before serving it to him.  ~  Gregory got to play at the McDonald's Playplace!  ~  We do not have to be isolated in an exam room when we go to clinic, anymore.  Gregory gets to be in the playroom, play with the kitchen set, see other kids and sing with Terry.  Daddy is planning on taking Gregory to his first movie on Wednesday.  Ironman 2 is on the agenda, then the five of us are going to have dinner, TOGETHER, in a RESTAURANT!!! 

He is still immunocomprimised, but we can do some "normal" things with added pre-cautions.  I finally received his schedule for re-immunization.  I have a few questions about it.  He cannot, ever, receive a vaccine with live virus.  Which means he can't have the Chicken Pox Vaccine.  I don't think they have a killed virus version.  This concerns me.  He also will never be able to receive the Small Pox Vaccine.  This I am terribly happy about in a really sick and twisted way.  Due to his health status I don't think he would be able to enlist in the military, but....... since he cannot have the Small Pox Vaccine, he will.  not.  ever.  be able to join the military.  Can't tell you how much this pleases me.  Gregory cannot get his MMR (Measles, Mumps and Rubella) Vaccine until one year has passed after he completes ALL immune suppression medications.  Which means I have no earthly idea when that will happen.  The chances of him being exposed to these diseases are slim.  I'm trying to find a way to be notified if there is an outbreak.  Of any kind.  I need to call out local health district and see if they can help me out.  I know that he could be exposed long before an outbreak is even recognized, but I'd still like to be informed.  This is one of the chances that we take.  All of our lives are filled with risk, we just don't know the level.  Gregory's is known and the only way to prevent it is for him to live in complete isolation.  Ha!  Not going to happen.  He still needs to LIVE.  

This week I also scheduled dentist, doctor and eye exams for Curtis and AnnMarie.  They haven't had routine visits for quite some time and they are seriously over due.  I KNOW AnnMarie needs glasses and Curtis needs new ones.  AnnMarie's teeth are all kinds of messed up.  They both desperately need to see their doctors, just because they are growing up.  I found an eye doctor for Gregory, here in town.  I was hoping to find a pediatric eye doctor that knew about Graft Versus Host and the eyes.  I don't think it's going to happen.  I scheduled him with a doctor at Spokane Eye Clinic.  It's a rather large clinic and I find comfort in that.  There is bound to be a doctor or two that has experience with Eye Graft Versus Host and Gregory's doctor can consult with them for advice.  Gregory doesn't have Eye GVH, but that doesn't mean he won't.  I want to be prepared.  He will continue to see his eye doctor in Seattle, annually.  He is well covered.  His cataracts need to be monitored every six months, which is why he needs a local doc.  Also, if anything acute arises.  

For posterity:  Gregory, without a doubt, has toe nail GVH.  He has an ingrown toenail, his right big toe.  His toenails get really thick and when they grow out they grow into the toe.  Once they get long enough, they start to peel right off at the demarcation between thick nail and new nail.  He has had this happen to a few toes, now.  Not only is the pain an issue, but it puts him at risk for infection. 

I feel the need to explain GVH.   Gregory's new marrow is the GRAFT.  The new stem cells were transfused into his body, found their way to his bones and ENGRAFTED, to form new marrow.  Gregory's body is the HOST.  Gregory's GRAFT doesn't recognize his body (The HOST) as belonging to it.  The GRAFT (new marrow) is making antibodies to attack what it doesn't recognize as belonging.  Mostly in the case of T-Cells, which are part of your immune system, your white cells.  These white cells have a life span of 5-10 years.  His current medications are suppressing the making of new cells.  They are only suppressed, not completely stopped.  He is still making a few, which is why he can be immunized.  The idea is to train the cells to live peacefully in Gregory's body.  There is not estimate of how long this could take, if ever.  We just manage the symptoms and deal with flares as we go along.  Yep.  The life of a Stem Cell Transplant Survivor.  At least Gregory's experience.

It's time to sign off and do a little reading before my eyelids get heavy.  I'm currently reading The Girl Who Played With Fire by Stieg Larsson.  I'm not a mystery fan but these books are GOOD!!!  It took me a while to get into The Girl With The Dragon Tattoo, but once I did, I could not put it down.  It's selfishly unfortunate that he died shortly after submitting the manuscripts for these three books.  I wanted to mention, too, that I read Three Cups of Tea.  What an awesome book.  I came away from that with a very changed heart and inspiration. 

I'm gonna go kiss all three of my OffSpring.  They are sleeping soundly the there cheeks are crying out for Mommy (or as Curtis now calls me, MOM) attention.  I just might whisper in their ears, too. 

With Hope, Peace & Love.

Posted via email from MindiTheMagnificent

Getting this out so I can REALLY write.

I wrote this a few weeks back and didn't feel like finishing/posting it.  Here it is, for posterity.  I think I wrote it the weekend of June 19/20.

I've been sitting here, debating about writing.  I usually have Sarah McLachlan on constant play, during the nighttime.  Angel is now playing.  Right now my Angel Arms are my fellow Childhood Cancer families.  A couple Dads, but mainly the Moms.  I've had several conversations on this topic.  There is just something about the female DNA that causes us to reach out, share, comfort, validate and just plain commune.  If it wasn't for my fellow Momcologists I have no idea where my head and heart would be.  Every last one of you, no matter where you are at with this beast.  YOU are my lifeline, my phone a friend, my 50/50.  So glad to be here with you all. 

A few things:  When we arrived in Seattle last week?  Monday we had to report to clinic at 10:00.  On the way to clinic a guy pulled up next to us, motioned for me to roll down my window.  He informed me that I had a flat tire!  I made it up the hill and to the closest gas station.  We weren't very far from clinic, at that point.  If I had called AAA at that point, we would have been late for the day.  I filled up the tire with air and drove to clinic on hopes and wishes.  We made it, with air to spare.  After our day was done, I called AAA.  One of the sweetest "retirement age" man showed up.  He was one of those stereotypical Grandpa types.  Gregory was absolutely fascinated.  The AAA guy showed up in a little pick-up with a cover over the bed.  He lifted the cover and it was filled with all kinds of tools and equipment.  Gregory is FASCINATED with the mechanics of stuff and TOOLS.  The AAA guy proceeded to lift the car, take off the wheel.........  Meanwhile I talked Gregory through every step.  Come to find out, something had punctured the tire and fallen out.  Mr AAA happily offered to plug the hole.  It was a stressful event in the morning that turned out to be a lot of fun for Gregory with a very happy ending for the tire and our pocket book.

We left Seattle at 5:00, Friday evening and drove across the state and into Idaho.  It was kind of a strange drive home.  Gregory fell asleep right away, the first couple of hours were very quiet and it allowed me to digest the weeks events and chew on the results we had received, just hours before.  Gregory was still tired and as we neared the 2/3 point of the trip, it was starting to get dark and he wanted to fall asleep.  Except he got really scared.  Of what I'm not sure.  He has been progressively scared of the dark.  Not quite sure where this is coming from, but I have a feeling it has something to do with his sense of security and everything he's been through.  We hit the Water Retreat at precisely 11:00 that night.

I really don't remember Saturday or Sunday.  We spent most of the time just hanging out and rebuilding our reserves. 

Monday we had clinic with our HomeHome doc.  It was mostly uneventful.  Except for Gregory hematocrit.  Just the week before his crit was 37.  Seven days later it was 29.  It could have been a fluke draw, so we re-drew it.  Nope.  It was 30.  So doc had us come in Thursday for a re-draw.  Thursday's crit was 31.  Which is not much higher, but higher is so much better than lower.  I  don't have an explanation for it.  I  have a feeling it's GVH related, though.  The previous week was crazy on his system.  After clinic we went to ShopKo to pick out his new eye glasses.  Good gravy, this child of mine.  I let him look through and try on all the glasses he wanted.  This is HIS choice.  He is the one who has to be Ok with wearing them, so I let him take the lead.  Without ANY input from me.  You know that saying:  The fruit doesn't fall far from the tree?  Well, this precious child of mine selected the cutest pair of RED Stainless Steel frames.  OMG!  The temples have a faceted look to them, so they kind of sparkle.  I cannot wait for them to arrive.  He looks so stinkin' cute in them.  He is also very proud of them and anxious to receive them.

Tuesday we had his panoramic x-ray for his teeth.  It's not a typical part of his care, but I really wanted to know where we were at with his teeth.  The good news is that he has all of his adult teeth.  The development is delayed.  This we expected.  Now it's just a matter of monitoring them and seeing what the next several years will bring.  There is no guarantee that they will develop properly, let alone develop at all.  The only thing we can do is wait and see.  Despite the fact that there is absolutely NOTHING that can be done for his teeth, at this point, I REALLY  NEEDED to know what was going on behind those gums.  Knowing what's behind there doesn't change anything, but it stops the questions in my brain.  The wondering.  I know I've mentioned this before......  I LOVE our pediatric dentist.  It used to be strange, in the beginning.  Dr C and I went to the same high school.  His dad was my dentist.  The care that he has given Gregory has just been so outstanding.  Everyone at Children's Choice is top notch.  Thank you, guys!!!  

On the way back to the water, we picked up AnnMarie.  She spent Tuesday, Wednesday and Thursday night with us.  It was very busy, she and Gregory had a ball together.  Gregory played hard, laughed and ran around.  I really enjoyed having her with us, too.  Although, this place is so stinkin' small.  Cannot wait to get HomeHome.  We dropped AnnMarie off with Mom and Dad on Friday.  We met at Albertson's and decided to make a spontaneous trip to my favorite ice cream shop, The Scoop.  Gregory hasn't had hand-scooped ice cream since before transplant.  The Scoop is in a really pretty neighborhood and we sat outside, ate ice cream and listen to some live music.  Meanwhile Curtis and AnnMarie chatted it up with anyone who even glanced their way.  After being away from them for so long, I've forgotten so much.  While we had a good time, it was so stimulating.  I felt like I had a permanent "Deer in the headlights" expression.  Trying to look out for Gregory, try to keep Curtis within his bubble and AnnMarie's constant chatter.  I used to be able to juggle it, or at least I was comfortable with ignoring a large portion of it.  It is going to take some practice to get back into the swing of things.  

I know I mentioned school for Gregory.  So.  Our kids are receiving a Montessori education.  Montessori is divided into three year age groups.  Gregory should have started his 3-6 years in the '09-'10 school year.  This next year would have been his second year, instead it will be his first.  Academically I think he is up to speed.  Socially is another thing.  I also have no idea how many days a week he is going to be able to attend school.  We are planning on five days a week and mornings only.  We will see what happens.  He really needs the peer interaction.  I am so used to his vocabulary.  Today he said something to Nana and it blew her out of the water.  Gregory's vocabulary is VERY advanced.  Always has been, but when you are four and spend ALL of your time with adults, what else can be expected.  We have yet to register him.  Summer time is a very difficult time to register for the next academic year.  It will all work out, though.

He has labs only, on Monday.  Thursday is his FIFTH birthday.  The following Thursday is his surgery.  They will be taking out his Hickman Catheter and placing a port.  They will also be changing out his G-Tube.  July 1 can't come quick enough.  With his elevated level of activity this week, his G-Tube has been really giving him grief.  So bad that on the way out of the grocery store, tonight, he stopped mid stride and doubled over in pain.  I picked him up and he twisted his tube around and continued on.  He's a little resilient.   

Posted via email from MindiTheMagnificent