I’m not a fan of Guilt.

It’s only been a month since I’ve written, yet it seems like three times as long.  My head has been stuck in a weird place, chewing on emotions, trying to find some peace.  It hasn’t been found. 

The biggest thing I’ve been trying to work out is my extreme feelings of guilt.  Guilt that we are not HomeHome, yet.  It’s been argued that Gregory needs as normal a life as is possible.  Which I agree with.  Here are the facts, as they have been explained to me:  Gregory does not have a sufficient immune system to fend off even the common cold.  Two of the drugs he is on, Sirolimus and Prednisone, suppress the cells that fight infections.  He is producing some of those cells, but not enough to work.  Those that are around are busy fighting with his body (AKA:  Graft Versus Host).  Should he get sick, he would very likely, need to be admitted.  So……. either he lives happy and isolated, or has exposure and runs the risk of being admitted.  Water Retreat or Hospital?  It’s been a no brainer for us.  Then there is the very real possibility of Lung GVH.  I have heard way too many stories of transplant patients who have gotten sick at one year post transplant, developed pneumonia which resulted in scarring of the lungs, permanent lung damage and Lung Graft Versus Host.  Add to that the fact that infections of any kind stress his body and makes his existing GVH flare.  If I have other options, why would I put him at risk?  I compare it to wearing your seat belt.  The likely hood of getting in a car accident are pretty slim.  Yet, every single time.  Every. Single. Time. We get into the car, we use our seat belts.  Not, when the weather is bad or when we are driving over a certain speed limit or when we are driving in a congested are.  Every single time.  Why risk it?  

Our Water Retreat is in Post Falls, ID.  Every now and again, they have troubles with their municipal water.  Gregory’s transplant center told us it was safe for Gregory to drink municipal water.  Bottled water was a no go, though.  Unless the bottled water came from a municipal source.  Well……  being the “overly protective” caregiver that I am, Gregory has not had a drop of water that has not been boiled first.  A few weeks back, Post Falls water tested positive for Coliform Bacteria.  Which means that the water probably had some Gram Negative Bacteria in it.  Which is really bad news for someone like Gregory.  My mom called me late one night, after reading about it online.  In that instant I felt totally vindicated in my role as Gregory’s caregiver.  We are doing everything we possibly can to keep him healthy, so he can heal and his new marrow can learn to live with his body. 

I even went so far as to call Seattle Cancer Care Alliance and talk to them about Gregory’s immune system.  He simply doesn’t have one, for now.  He is on a prophylactic anti-fungal, anti-viral, two antibiotics.  Sirolimus and Prednisone.  He also still requiring IVIgG, roughly every four weeks.  Usually transplant patients can start their re-immunizations at one year post transplant.  Due to Gregory’s current meds and his need for IVIgG, we don’t know when his immunizations can be started.  Immunizations only are effective if you have cells that can create memory.  Gregory just does not have enough of those cells for immunizations to be effective.  We also found out that he does have adrenal insufficiency.  Which comes from prolonged steroid use.  His current steroid use is a big dose a day, nothing the next, big dose, nothing, big dose, nothing…….  Wednesday he will be receiving Hydrocortisone on his off steroid days.  I have yet to find out if this is reversible.  

The other part of getting us HomeHome is the house being finished.  At this point, I feel safe to bring Gregory home.  We seem to be at the tail end of cold/flu season.  The house.  I’m so tired of explaining why we aren’t HomeHome.  I’m tired of defending our choices and trying to explain to people that Larry is doing it all and then some.  Yes, he has help from my mom.  He is currently a single dad of two, making a living, running the household, having to carve time out to see us, trying to remodel the house.  We will get home, when we get home.  One thing I do not need anyone to remind me of is the fact that I have two other children.  I am acutely aware of the fact that I have three children and two of them need me.  Trust me.

Part of getting the house ready meant replacing our refrigerator.  In the spirit of trying to be a little more “normal”, Gregory went with Larry and I to look for one.  Gregory and I left early one morning, during the week, and met Daddy.  We went to a local appliance store and Sears at the mall.  I know that Gregory does not really benefit from wearing a mask.  The way that I use them, I think he does.  I make him wear a mask in public so The Public will stay away from him.  He is so stinkin’ cute that everyone wants to get up in his face and talk to him.  Seriously, please stay away.  With him wearing a mask, people tend to keep their distance.  The appliance store was no big deal.  The mall was s different story.  Reminding him to not touch ANYTHING, reminding him to stay away from other people, reminding him to not touch the railing on the escalator, catching a small child out of the corner of my eye begin to approach Gregory and immediately jump into defense mode.  I can’t tell you how many times I have put my body between Gregory and some other small child, in an attempt to keep said child away from Gregory.  It’s usually a quick jump between them and I end of scaring the other child with my quick moves.  It’s almost a lunge, I stand there with my arms out, hands spread, feet planted apart and I’m usually crouched, too.  Picture it.  Looks pretty ridiculous, doesn’t it.  Anyhow, I digress again.  Despite the fact that it was late morning, Gregory was hungry and had a fresh Arby’s Ham Sandwich and Curly Fries which he devoured.  We went back to the appliance store and bought our refrigerator, then headed back to the water.  It was good to get him out, although he was wiped out.  

Over the last few weeks we’ve been tapering his steroids.  A little over a week ago, Gregory lost interest in food.  He is down to about 200-300 calories a day, by mouth.  He is just not interested.  I take that back, he is interested but has no appetite.  His nutritional needs are met through his G Tube with formula feeds.  Which he is tolerating.  Except this past Sunday he woke up at 3:00am and heaved all over creation.  He hasn’t yakked since then.  I don’t know if it’s GVH related, adrenal insufficiency related or simply a fluke.  Only time will establish a pattern, if there is one.  He does have some oral changes, they are subtle.  His mouth is drier, he seems to have more white surfaces and little red spots that come and go.  His appetite could also be related to his oral GVH.  Food can just taste bad with oral GVH.  Gregory just doesn’t have the language to tell me these things.  We still don’t know if this current therapy is working on his gut GVH.  We need more time to pass before we will know.   

AnnMarie has spent several “double header’s” with us.  Meaning she’s stayed two nights in a row.  Having her here with us has been a dream.  I even taught her to knit in the round last time she was out.  When she’s here, every few minutes I hear “Mommy, I love you.”  If she’s not wrapped up in something with Gregory or busy working on a piece of art, she’s attached to my hip.  She asks to cuddle, constantly.  *sigh*  Curtis has been having a rough time, lately.  I can’t have him out for an overnighter, without Daddy.  It’s too small out here and he doesn’t have a place of his own to go to.  He did come and spend the night with us and Daddy.  I’ve been away long enough to have forgotten how to interact with Curtis.  What he needs, how he needs to be approached.  How to treat him like a big kid, but a big kid with different needs.  I triggered a meltdown by tapping his head when I wasn’t getting his attention.  Forgetting that you cannot jolt Curtis to get his attention.  He needs a gentle reminder to come back to the present.  Going HomeHome is going to be tough.

Gregory’s one year follow up with Seattle Cancer Care Alliance is the week of June 5.  Not very far off.  We will be in Seattle for that week.

I know there is more to write.  This is basically and ice breaker.  I’m back, hopefully more frequently.  I have more to get down, but I’m saving for another time.

Posted via web from MindiTheMagnificent


About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
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