In A New York Minute

There are not enough nouns, verbs, adjectives, pronouns, adverbs……..  I cannot put, adequately , into words, what this last week has been like.  I’ve been hestant to say anything because it’s just so complicated and Mysterious.  I’ve been desperately trying wrap my head around that word.  Not just the word, but all that it implies.  Mystery:   something not understood or beyond understanding  Up until now, there has been answers and expected events.  Symptoms with a source and a clear treatment.  Even Gregoy’s initial diagnosis carried a clear cut answer.  Chronic Graft Versus Host sucks the big one.  For now. 
When I take the time to break it down it causes me to pause.  Think about it:  Gregory’s blood is someone else’s.  The range of things that our blood does is amazing and complicated.  A delicate balance.  He shares his blood with another person.  His whole blood producing system.  Incredible. 
Gregory’s gut symptoms have been escalting over the last several days.  Violently wreching several times a day, literal “gut wrenching” stomach cramps.  At the end of a several hour stretch of G Tube feeds, he will wretch up every last millileter that has been pumped into his stomach.  The feeds are simply lying in his gut.  With each day that has passed, we have been removing items that go in his gut.  We have changed his anti-nausea medication from Zofran to Reglan with Bennedryl.  Reglan is an anti-nausea but it also helps with emptying the stomach.  It’s become clear that this is not helping.  Even at a higher dose.  (Unless you consider emptying through wretching effective.)  Thursday we asked for another consult from the Pediatric GI doc.  He talked with Doc on Friday and ordered a Gastric Emptying study.  It was performed today.  Right after a dose of Reg/Ben we went down to “Nuclear Medicine” for them to inject a radioactive agent into Gregory’s G Tube, followed with 60 mls (2 ounces.  or 1/8 of a Grande Latte) of his formula feeds.  He was strapped, cacoon like onto a table, with his arms free.  Gregory was then placed into a machine that went from his chin to his toes, mere inches from his chest.  He then had to lie still for an hour.  The machine then visually recorded the path of the feeds, detectable with the radioactive material.  He had several moments where I thought he was going to lose it.  He needed to pee and these days he likes to stand on his knees to do his business.  He struggled with not being able to do this and finally gave in to bladder pressure and did his business. He told me, “Mommy I pee’d.” with such a sound of defeat and resignation.  Almost like it was another humiliation he had to endure.  I mean, really.  It’s been days of “Mommy, I wish I would stop pooping” and “Mommy, I don’t like my belly.”  Mostly he did such an awesome job with this test.  I am so proud and saddened.  Know what I mean?  We came back up to the room and had a few really great hours.  Four and 1/2 hours after I put the 60 mls of feeds in his belly, he started cramping and heaved.  He heaved out exactly 60 mls and it looked exactly the same as it did going in.  His gut did nothing with that 60 mls of feeds. 
Friday the decision was made to involve Seattle Cancer Care Alliance.  Right now, we are waiting to hear if we will be returning to Seattle for cGVH (Chronic Graft Versus Host) treatment.  I have no idea what the likelyhood is of us returning.  The fact that it is even being considered is huge.  The greatest part is that my favorite Seattle doc is the one who got the call.  Dr Laurie Burroughs.  Love that woman.
Upon hearing that they are considering sending us back to Seattle, the brain starts clicking.  As it stands, Gregory is on round the clock IV meds.  Once again.  We need to limit what goes in his gut.  He is only receiving his Tacrolimus and his Penicillin VK via G Tube.  Which makes me wonder, HOW will I get him to Seattle?  This would, most likely, be a hospital to hospital admit.  Which means hospital transportation.  Ambulance?  Private commuter plane?  Helicopter?  Then there’s the family.  Just when we thought we might feel comfortable to return HomeHome, soon.     It has brought back the feelings that were present just after diagnosis.  The panic, the chaos, the confusion.  Trying to prepare for something that simply cannot be prepared for.  Something that just needs to happen and you are simply along for the ride.  A friend asked me how I felt about returning to Seattle.  My response:  “If that’s where we need to be, I can’t get there quick enough.”  No matter what decision is made, we will be where we need to be. 
I’ve never mentioned this before, but I have a very deep love for Seattle Childrens Hospital.  There is something about being in a hospital who’s sole purpose is the care of Children.  As a parent of a child, it’s strangely comforting to be there and know that EVERYONE is there to see/care for a child.  While I LOVE our unit in Spokane, the hospital services all ages.  Walking around here it feels incredibly disonnected.  Being at Seattle Childrens, when you roam the halls or go outside, you are looking into the eyes of parentas, grandparents, siblings and loved ones, of CHILDREN.  Everyone KNOWS you are there for a child.  I can’t describe it.  It’s a safe haven, despite what demons and fears can be found there.  It is also a place of hope and promise to so many.  I probably sound like a bumbling idiot, but I really love that hospital.  Needless to say, I have no reservations about returning to Seattle, should we need to. 
We should hear, Monday.  We also start with a new doctor on Monday.  Gregory’s oncologist is retiring.  Our new doc is far from “new”, but she is new to us.  Thankfully I find much value in colaborative care.  Switching to a new doctor is not bothersome, for me.  Gregory is another story.  I haven’t decided if I am going to tell him.  If I do, it won’t be right away.  He is incredibly attached to Dr Reynold’s and I don’t think his steroid laden emotions can handle knowing that Dr Reynold’s will not be seeing him here, anymore.  The information could also make transitioning to Dr Felgenhauer very challenging.  Basically I’m going to watch and listen.  When Gregory notices that Dr Reynold’s is no longer around, we will talk about it.  After all, Gregory’s calls this hospital “Dr Reynold’s Hosible”.  Gregory may have been three at diagnosis, but he is now four and a half and quickly getting even older and more and more aware.  Our conversations are constantly changing and growing.
We have a few really great hours, a few really bad hours.  Never knowing what’s coming next.  ’til later, gotta jet.

A few good hours.
A few good hours.  Papa gave Gregory a bubble machine!

Greginator 083
This is what I miss.  (Daddy, too.)


About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
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