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.

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About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
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