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.  Papa gave Gregory a bubble machine!


This is what I miss.  (Daddy, too.)

Posted via web from MindiTheMagnificent

Thanks for jumping in the hole with me. Every last one of you.

via youtube.com

Posted via web from MindiTheMagnificent

Gregory is good, TODAY.

What a week! The mental, emotional and physical roller coaster continues. First things first. Results are in and Gregory's Bone Marrow Aspirate showed no evidence of disease. Our hospital here, also did a test to detect how much of Gregory's marrow is donor and how much is his. Spokane's results showed 100% donor. We received these results last Wednesday, the 20th. The marrow was also sent to Seattle Cancer Care Alliance. They are reporting a different number for donor/Gregory. Seattle is reporting that his marrow is 99% donor and 1% Gregory. Which is good, but I'm not sure what this means for the long run. I haven't asked, yet. I do know that 99% is good, too, yet I wonder if this means anything in the long haul. Is the new marrow slipping? Will Gregory's marrow slowly come back? *shrug* Only time will tell. I'd be curious to know what the donor to host ratio is for any of you out there with Bone Marrow Transplant kids. Not that it would be a reflection of Gregory and his disease, I'm simply curious. I must confess that I'm concerned about Gregory's gene mutation. When we last looked for the gene mutation, Gregory was 100% donor. The gene mutation was not detectable. I'm concerned that with him being part "himself" that the mutation is still present in his own marrow and the disease could rear it's ugly head. *See what I mean? There never is a moment's reprieve.*

His BMA was last Tuesday and we were discharged on Wednesday. Late afternoon/early evening. We made it to the Water Retreat about 7:00 that night. We had such a pleasant evening. Gregory was in fantastic spirits and we had room on the bed to comfortably snuggle and hang out. After his midnight dose of Tacro, I turned the light out, laid my head on the pillow and was OUT! First time I've been able to do that in a long time. I slept solid until 7:00 when the alarm went off and it was time to do it all over again. Mom came out to see Gregory, while I ran a few errands. I took the time to go to Barne's and Noble's and Staples and browsed for about 30 minutes in each store. Books, office supplies and yarn. My three favorite stores! At Staples I was finally able to find some of those window crayons, which are basically fat, colored grease pens. When I returned, Gregory was still in a fantastic mood, he got up and drew on the window. All day Thursday was so awesome. He was happy, playful and just plain good.

Late Thursday (9:00 PM ) his body decided to spike a fever. 101 degrees. Which meant another admit. We had a blissful 27 hours of freedom. I re-loaded the car and we took off. This admit was the smoothest admit I have ever experienced. Everyone was quick and efficient. On Wednesday his ANC was 3200ish. Late Thursday night it has risenn to 7700ish. He's been hovering between 2800 & 3200 for the last several weeks. Seeing a big jump like that signaled that his body was trying to fight something. The tough part is that his marrow is not making the white cells needed to fight anything off. They are supressed with his Tacro and Steroids, in order to keep his Graft Vs Host at bay. It's a double edged sword. The same cells that cause Graft Vs Host also fight bacteria and virus'. Not to mention, his marrow is still not fully mature. Cultures were drawn. His temp at the ER was 99. Gregory's "normal" temperature is between 96.7 & 97.2. When he pops anything in the 98 - 99's I know he's working on something. He also had that glassy eyed, red cheeked "fever" look. He was started on Vanco and Fortaz. (antibiotics) I forgot to mention! Around 6:00 that night, Gregory also started to get a headache. I was able to get some Oxycodone in him and it seemed to get better. By 9:00, though, it was returning. (Remember he had a giant headache the Saturday before.) They administered the Fortaz and started the Vanco, while we were still in the ER. We made it up to the unit around 2:30 and got settled in. When we entered our room, it was set up for us. With the supplies I like to use, where I like to store them. It was both extremely pleasant and kinda creepy. Creepy because we have been here long enough for the staff to know what I like and how I like it. Pleasant because they have paid attention and take care of us.

His temperature remained in the 99ish range for a little better than 24 hours. Then Saturday afternoon he had another 99. He's kinda jumping around a little. His cultures have been negative for any bacteria. The conclusion is that his body obtained something (gut most likely) and is body is trying to defend it. The antibiotics have been discontinued and we will, most likely, hang out until Monday. Provided nothing else transpires, in the mean time.

We did get to see another night of fantastic Fireworks. The National Figure Skating Championships are being held here in little old Spokane. The arena is located just outside our window and down the hill. We have had a perfect viewing position. We were inpatient for the fourth of July, these four nights of fireworks have more than compensated for what we didn't see on The Fourth. While the fourth of July was VERY adventurous, Gregory was so sick, he didn't really experience it.

Daddy has been able to be with us quite a bit, too, over the last several weeks. He spent the night with us on Friday. My dad was here when Larry showed up, so Larry and I ran across the street to grab a brewski. Man, oh, Man. It was around 7:00 in the evening and a Friday night. The bar is small and newish, located in a strip mall type setting. The place was crowded, noisy and humid. Talk about stimulus overload. The last time I've been somewhere like that was early last May. While it was nice to get out and have a libation, it was too much and I couldn't really relax. Next time we will stick to the PI, which is an OLD tavern right across from the hospital. It's dark and grungy looking. Perfect for quiet escapism. Larry spent the night with us, that night. He slept in the bedside recliner. It's been quite nice to have him here. Something we weren't able to have, while in Seattle.

I need to get out a few quick thank you's:
Terri & Gaye~ Thank you so much for the Thomas Hammer coffee cards! So perfect and timely. It's great to not have to think twice about getting my Joe!
Lori ~ Via & Starbucks Cocoa Powder? Brilliant! Can't tell you how much I've enjoyed them.
~j ~ Lunch from Luna's. Sweet, spicy, crunchy, smooth, fresh, fragrant, herbal. Perfection.
Little Wishes ~ Thank you for taking such great care of Gregory and the rest of the kids around here. Nettie & crew, you ROCK!
Margie ~ Thank you for the cards and the books for Gregory. I know this isn't easy and I so appreciate how much you've done for us.
My fellow cancer/bmt families ~ Thank you for being you. Grieving, rejoicing, worrying, sending love & light. You surround us and keep us strong.
KR ~ Fresh, home roasted, fresh brewed "good" coffee!!!!! *swoon* It was perfection in a cup. Thank you, my dear. (Man, do I see a theme here, or what?)

We still do not know WHY Gregory's hematocrit took such a dive and he needed a red cell transfusion. Once again it's been attributed to "......he's suffering the effects of his treatment." The last several days I've been trying to wrap my head around the fact that we may not have an answer. Up to this point, this has been a series of "cause & effect". Not this time. For now, I'm wanting no more headaches and his hematocrit to remain stable. (Along with the rest of his health to be good!)

Gregory is good, TODAY. This is what we have. It's enough. 'til later, Gotta jet.

Posted via web from MindiTheMagnificent

"....it doesn't look good."

I don't want to write. I need to write. I think I need an echo. My heart has to be in rough shape.

Gregory had his Bone Marrow Aspirate on Tuesday at about 1:00pm. We won't know any results until later Wednesday, at the earliest. We have several different tests that are being performed and some of the results won't be ready until, most likely, late next week.

The last few days have been a whirlwind. My emotions have been riding that roller coaster, again. Saturday he received his Red Cell transfusion. As the nurse was hanging the bag of cells, I couldn't help but cry. Seeing that red bag felt like defeat. Gregory's last red cell transfusion was at sixty days post transplant. We are now nearly eight months post transplant. Add to that the fact that he is throwing an abnormal number of Monocytes and Myelocytes in his White Blood Count. Using doc's words ".....it doesn't look good."

Add to that the fact that Gregory has been experiencing days of feeling really good and days of feeling really bad. His gut is still giving him troubles. Not tolerating feeds, frequent & unpredictable heaving, not tolerating meds. Saturday night he experienced a huge migraine. It took quite some time to get it under control, too. Monday night he started having burning, loose stools. Burning enough to use oxycodone for pain. He also has been hanging on to Phosophorus. Which can lead to kidney stones. He is now on a 3x/day dosage of Aluminum Hydroxide. Which helps the body to rid itself of phosphorus. His original blood cultures, that showed positive for a blood staph infection, have been the only cultures to show positive. Which leads us to believe that it was contaminated. We have sinced discontinued the Vancomycin. Saturday he also had severe diarrhea. The purely liquid kind. Which meant he was dehydrated, pretty quickly. Diarrhea, combined with his frequent vommiting have caused us to keep a super close eye on his hydration and are compensating for any loss via IV fluids. Then......... for a short time, out of the blue, the kid is back. Happy, playful and riding his tricycle. Mind blowing.

For Tuesday's sedation, they used Fentanyl & Ketamine. (Yes, that's Special K) What a trip. Literally. First off, this sedation is a "disassociative anesthesia". Which roughly means, your mind goes "somewhere else". I was able to hold Gregory while they administered the drugs and he "fell asleep" in my arms. We then laid him in position. This drug allowed Gregory's eyes to be wide open, the whole time. The lights were on, but nobody was home. Talk about spooky. Once they were done with the aspirate, I was able to be right there with him. Every moment. Good thing, too. Thankfully he had no respiratory issues, this time. Yet, the hallucinations were fierce. He honestly believed he was in a video game. He yelled "Stop! Stop! Stop the game!" Frequently and with tears. He would hold his hand up to his face and stare at it, while rotating it in front of his face. He really did not know where he was. My being able to hold and talk to him, I hope, kept him tethered to what was real. He recovered realtively quickly. 45 minutes, maybe an hour. It may have been emotional, but it was NOTHING compared to his reactions to Propofol. Once the effect wore off, it was as if nothing had happened. He was happy and playing.

Now we wait. While I think it's relapse, doc doesn't agree. He mentioned MDS. Which, quite frankly, freaks me out more than relapse. A diagnosis of MDS would be a diagnosis of "MDS, secondary to treatment". The three big gun chemos that they used for marrow conditioning, prior to transplant, can cause MDS. Cytoxan, Busulfan & Melphalan.

*screech* Yes. I just threw on the brakes. This is the point in the conversation where people tell me to "get a grip", "don't worry about it, it'll be all right", "don't put the cart before the horse"............ In my world, that's not how it happens. I am not making mountains out of mole hills. This is the reality. This is what happens, more often than you really want to know. I considered sharing the number of relapses'/deaths I've experienced since February of last year and I just cannot put a number to it. I will say that it's more than 10. That's only counting the number I've met in real life. If I included my online community? The numbers are staggering. Statistically speaking, in the first 19 days of this year, 722 kids have been diagnosed with childhood cancer and 133 have died. These are the numbers we face. Daily, hourly, minute by minute. By dismissing my worries and fears, it conveys a disrespect for what we are going through. I understand that it is far easier for people to scamper to safety and pretend that everything is going to be OK. It's HARD to face these demons and realities. Yet, I do not want to get hit from left field again. Doc mentioned MDS earlier and I did not give it a second thought. After a discussion with a very good friend, I decided to look it up. While reading through the description, I felt that gut wrenching, head pounding, sweat producing, lights dancing in my vision feeling. It never dawned on me that Gregory could be hit with a secondary malignancy so soon post transplant. With a little more research, I found out that YES, it happens. After about an hour, now, I feel like I can take the news and work with it. Ask my questions and understand the answers. Playing Dr Google can often be a bad thing. For me it has done everything to help me. I have learned so much. Things as simple as the correct pronounciation of words to intense descriptions of White Blood Cells. I'm far from well educated, but I have a working vocabulary that allows me not get overwhelmed by technicalities.

Now we wait, as test results slowly trickle in. Doc also mentioned that he is concerned that Gregory is no longer 100% donor. At this point I have no idea what all these possible reasons mean, in terms of treatment. I will not be asking that questions, until we have a diagnosis. A very dear friend of mine asked me what my gut feeling was. I did not have an answer. I have never been one to even be able to HEAR my gut, let alone listen to it. I did come to this conclusion, from the very beginning, I have prepared myself for two transplants. I guess you could say my gut speaks in broad brush strokes. I don't have anything for this particular event, but I do feel two transplants. I would be more than happy to be proved wrong. Trust me. 'til later, gotta jet.

Posted via web from MindiTheMagnificent

At this stage of the game.......

Hi, folks.  It's me, again.  Gregory is still inpatient.  Still trying to get his blood infection under control, while struggling with feeding stuff.  He started not tolerating his feeds, again.  We are trying yet another formula.  Regular, workable stuff.  Not the real reason for this update, though.

On Wednesday, Gregory's hematocrit was 29, it took a five point dive in 24 hours.  Thursday morning it was 24.  (Hematocrit has to do with Red Blood Cell production)  Friday morning, it is now at 22 

We do not know what is going on.  Doc ordered some tests to dertemine how long his cells are "living" and some other studies.  As of this morning, he is offically at Red Blood Cell transfusion threshold level.  (At least for this clinic, 22 is the standard threshold.)  He set Gregory's threshold, for now, at 20.  I don't doubt that by tomorrow morning, he will be there.  In preparation they drew a type & cross.  They type & cross a sample of his blood to compare with blood used for transfusions.  The nurse came into the room with the vials, paperwork and the wrist band and it was all I could do to forcefully kick her out of the room and run screaming in denial.  A need for a transfulsion at this stage of the game does not look good.  Like I said, we don't know what it means, we only know it's not good.  Obviously, a bone marrow aspirate is now needed.  He will have one next week. 

I am not a hematologist.  I have no idea if their are other factors that could be causing this.  He has not had a fever, which eats up red blood cells.  Two possibilites are relapse and marrow failure.  Could there be another reason?  Quite possibly, but I don't know what they are or what they might mean. 

Right now, Gregory needs to be surrounded with light and positive energy.  His demeanor is fantastic and we are acutally having quite a few laughs and fun.  He is retaining fluids, though, and looks quite puffy.  Which is hard to imagine, considering the "steroid" puffy.  His kidneys are working properly so we are giving it a day to see if his body will flush out these extra fluids.  Doc estimated it to be about a liter of fluid retention.  Anymore and I'm sure there will be some intervention. 

Needless to say I'm scared.  We don't know what's going on and are now playing the waiting game.  Once the type and cross was drawn, they put a band around the wrist that dates the type and cross.  They are only good for a few days.  Seeing that band around Gregory's wrist breaks my heart.  At least at this stage of the game.  His last red cell transfusion was August 10.  Sixty days post transplant.  There's something going on in his little body and I want to know what it is and what the plan is. 'til later, gotta jet.

 

Posted via web from MindiTheMagnificent

We need to agree to disagree.

Jaw breaking, tear duct activation yawns.  Induced by exhaustion and extreme highs and lows.  Very few highs, more like the altitude of speed bumps.

We were discharged Saturday.  Suprised everyone.  Gregory was just starting to not heave and we had begun to transfer all his meds back to oral, from IV.  Doc decided that if Saturday morning went OK, we could leave.  Well, Gregory did well and we left.  There hasn't been a day since, that he hasn't heaved, but it's down to once a day.  Today it was twice.  Except we are slowly increasing the concentration of his G Tube feeds.  Normal concentration is 30 calories an ounce (one once = 30mls).  We have made it to 22 calories an ounce.  I think the concentration is an issue.  He heaved 350mls today.  His total G tube volume was 550mls.  Ugh.  He's going to remain on TPN for quite some time. 

Monday we were up at the crack of dawn to head in for our regular clinic appointment.  No big deal, blood draw, exam, nutrition.  Everything is set.  Wednesday morning, I receive a phone call at 8:00.  "We need Gregory to come back in.  One of his blood cultures from Monday came back positive for an infection."  Crap.  I decided to tempt fate and didn't pack a thing.  Last time this happened, doc sent us home with IV antibiotics from home.  I was hoping that would be the case.  Nope.  We are currently inpatient.  Again.  Hopefully for only 2-3 days, though.  We shall see.  He hasn't shown any signs of an infection, granted he's on high dose steroids.  Also, cultures were drawn on Monday and we didn't get the call 'til Wednesday.  Which tells me it was caught early.  Thank you for weekly survelliance cultures!  So, here we are, our home away from home away from HomeHome.

From what we can tell, Doc thinks Gregory has/had a viral stomach infection.  Not sure what, but it's what it looks like.  Gregory is better, but only incrementally.  His gut is in pretty bad shape and it's going to take quite some time for it to recover.  Provided he doesn't have any Graft Versus Host flares, in the meantime.  There is no timeline on this.  We simply manage the symptoms and take it slow.  He is still not eating solid foods, nor drinking anything except water.  His stomach is just not ready and I won't put him in a situation where he is going to feel even worse.  One step at a time.

One reason Doc thinks Gregory's symptoms were viral in nature:  Gregory's counts are recovering.  Slowly.  Ever so slowly. Yet they are coming up, instead of continuing down.  I think the Bone Marrow Aspirate has been taken off the table, at least for now.  It could change tomorrow, but that's the name of the game. 

One thing that is bothersome to me, is the fact that he has pain and tenderness at his G Tube site.  He has very little movement, he sits/lays a lot.  He hasn't walked more than a few steps a day, for weeks.  The site looks really good.  In fact the nurses keep commenting on how good it looks.  I'm not worried about infection.  I just think that Gregory has moved so little, since it was placed, that when he does move, it causes a lot of discomfort.  No one seems overly concerned about his level of pain, either.  It often brings him to tears.  It hurts him, really badly, sometimes.  His little body has really been put through the wringer and it's no suprise that this is the result. 

I've had a really hard time, sitting down to write.  Time has much to do with it.  I have a ton of theraputic writing I want to get out.  Here's what I struggle with......  before Gregory was diagnosed I wrote semi-privately, for myself but to a very small, selected group of like minded people.  I'm now putting words in front of a very large public audience.  While the main topic is Gregory, there are things that come along that have more to do with my own opinions and beliefs than Gregory's state of health.  I find myself censoring my words or just plain not putting them down, in fear of offending someone.  I realize that this is my space, I should have the freedom to say/write what I feel, yet I have asked everyone of you to support Gregory and keep him in your thoughts, with the hope of recovery and life.  I have some pretty bitter and angry moments.  Thoughts and expressions that are do entirely to ME and my experiences, than anything else.  I do not want anyone, ever, never, to feel like I am passing judgement.  Someone reading my words may take it that way, but remember, these are my words.  My thoughts.  I'm trying to learn how to write publicly.  I know there will be criticism.  For every ONE person who actually posts a comment, I'm sure there are 50 more wishing they had the guts to comment. 

I guess what I'm trying to say is this:  We need to agree to disagree.  We need to acknowledge that we all have differing opinions and experiences.  We are unique.  We will never agree 100% on everything.  Any issue that we have with each other has more to do with ourselves than the actual issue. 

Can you tell I'm trying to set myself up for some hard stuff?  We will see.  My words.  My timeline.  I just know that Gregory's counts are recovering.  He rode his tricycle.  His spirits were awesome Tuesday night/Wednesday.  My heart is lighter, tonight and it shows.  Larry, Curtis and AnnMarie stopped by the hospital Wednesday night for a visit.  Larry sat with Gregory while Curtis, AnnMarie and I had dinner in the cafeteria.  It was lighthearted and fun.  I had a really good time with them and I think they did, too.  Not a monumental event, but another moment.

'til later.  Gotta jet.

Can you see how much better he was feeling? 

Posted via web from MindiTheMagnificent

White Cell Visual. Sooooo cool!

via upload.wikimedia.org

Posted via web from MindiTheMagnificent

Yes. I really went THERE.

I must come clean.  In the deep recesses of my heart and brain, I too, was/am waiting for the day when things will be better.  Amongst all the muck and grime, I had a moment of joy that was awfully brilliant and it shifted my head and heart.  On Tuesday, between sleeping, puking and generally feeling like crap, Gregory decided he wanted to ride a tricycle.  He enthusiastically hopped on the tricycle and took two spins around the unit.  I was internally bursting at the seems during this moment.  Just a few days prior, he wasn't even bearing weight on his feet.  Tuesday he decided to go for a ride.  This was not a corner turned.  This was a moment.  By Wednesday he wanted nothing to do with the tricycle and was too weak to even stand on his own.  As is my MO, I'm always looking for "The Next"..........  Waiting for it to "Get Better".  It dawned on me that these moments of happiness are not sustainable.  They will happen when they happen.  Which means I need to enjoy them AS THEY ARE HAPPENING and be glad that they happen.  Instead of constanly wanting it to be Better or happen Again. 

Gregory has been sleeping a ton.  Monday night it was 8:30pm-11:00am.  Tuesday it was 1:00am to 3:00pm.  He's currently sacked out so we will see if this trend continues.  We started G Tube feeds Tuesday night around 8:00 and by 5:30 in the morning he was having belly pain and heaved huge at 6:30.  Wednesday we started feeds at 6:00 and he has yet to have noticable belly pain and hasn't heaved.  He is incredibly weak, though.  When he stands he shakes and can't takes steps without assistance.  He is going to need some time to rebuild his strength.  This gut episode has wiped. him. out.  We have not bee able to determine the exact cause of all this.  Doc suspects a viral infection.  We just cannot find it.  Why? You ask.  Well, it's tied to his symptoms and his blood work.  Which is a double edged sword.  Gregory's Hematocrit has made a significant drop.  His white count is also down, quite a bit.  His platelets are continuing a slow downward spiral.  The content of his White cells is all over the place, too.  Gregory's leukemia, as Doc puts it, is a slow burning disease.  It smolders.  It can be active and you might not know about it for some time.  Gregory's current counts could be related to a viral infection, bone marrow failure or relapse.  Or it could totally be just his body recovering from surgery/belly issues and it's trying to correct itself and since his marrow is not fully formed, it's going to take a while for it to bounce back.  Needless to say, on Sunday doc said we are not leaving here without a Bone Marrow Aspirate.  You can (well at least some of you) imagine what kind of a tailspin that puts us all in.  I do not know when we will do this.  When I talked to doc about it, yesterday, I was "that" mom.  A bone marrow aspirate at this time is not an emergent issue.  I will NOT put Gregory through on until he is feeling markedly better.  I will NOT do an out-patient/slam-bam/in & out BMA.  Due to Gregory's sedation needs, they have to put him out with heavier duty agents then is typically used for BMA's.  When he came out of the sedation for his G Tube, he experienced some scary respiratory issues.  I'm NOT taking any chances.  Gregory's over all health is still incredibly fragile.  He does NOT need another set back.  I pretty much spoke all this to Dr Reynolds.  He took it very well and agreed.  So.  We won't have a date for the BMA until Gregory starts to feel better and can recover some of his strength. 

Speaking of being "That" mom.  The Tacrolimus issue worked itself out.  The morning after I posted about it, they tested his Tacro levels.  (The amount of Tacro in his blood.)  It came back much higher than we want it to be.  Therefore....... They took him off the 24 hour infusion and put him back on 3x/day oral.  IV problem solved.  I honestly believe that The Universe knew that this was a battle I wasn't going to find resolution in.  I believe that me making a stink about it would have just frustrated me.  By putting my fears and concerns out there, The Universe took care of what it could.  Part of Tuesdays "Tricycle Happiness" was also supported by the lightness of the load that I carry.  I forget that writing really helps me to shed some tension.  Writing is not a purge, for me.  The word purge signifies that something has been expelled and does not exist in me, anymore.  No matter how often I write, this is still a part of me.  Writing though, allows me to spread the burden, put my heart and my head in your trusting selves and allow myself to share the burden.  Not that my intention is to worry all of you or expect you to carry us through this.  It's something I can't quite put into words.  It's knowing that when I call/run into any of you, hopefully I won't have to re-hash most of this and you can look me in the eye, knowingly.  With an unspoken "I've got it."  Writing is also a release of my "stuff" to the greater unknown.  Putting it out there and seeing what happens.  'Cause I certainly can't do this by myself, but I'm far too proud to ask for anything I might really need. 

Yesterday I did something I haven't done in over eight months.  Something I probably shouldn't have done, but I wanted to, so I did it.  Larry came down yesterday afternoon and suggest I be the one to pick up Curtis and AnnMarie from school.  So I did.  The kids stay after school, until 3:30, for Study Club.  It's just an extra 30 minutes of time in the class room.  Time when it's quiet.  I pulled up to the school at 3:00, ran into the grocery store (which is across the street) grabbed a few essentials, dropped them in the car and headed across the street.  I stood there on the sidewalk, staring at the school, stuffing my anxiety.  Trying not to think about the germ infested petri dish that is an elementary school.  Walking onto campus and seeing familiar faces, at this point, is so challenging.  Watching their faces as they glance at me, really look at me and register who it is.  Watching the emotions flutter across their face.  Shock: "Is that who I think it is?"  Joy:  "Things are OK.  She's here!"  Realization: "Crap.  What do I say now?"  Then there's the fact that things are not OK, yet here I am.  Curtis and AnnMarie even had that moment.  I kid you not.  Both of them had the exact same reaction to me walking into their classrooms.  They each looked up at me, SHOCK.  JOY, REALIZATION.  Except their realization took them to a different place.  Both of them, the first words out of the mouths:  "Have you moved back home?"  With all the hope and joy that comes with this very loaded question.  Of course I had to say no and they had to settle for just a Pick-Up.  They were troopers, though and powered right through it.  Seeing Paula and Mrs Bowman was hard, too.  Despite the fact that I probably shouldn't have, they recieved *fierce squeeze*s.  Something all parties needed.  

Today is a new day.  My ability to even make that statement is big.  Today I can make that statement.  This moment I can make that statement.  I'm OK with that, too.  Ask me in an hour and it could be radically different.  I'm OK with that.  For now.  For this moment.  No more waiting for corner's to be turned.  No more wanting "this moment" to be sustainable.  Relapse, Bone Marrow Failure and Death are just too big to allow for anything else.  I have imagined writing "The Relapse Entry".  I have envisioned "What I would do if Gregory died.".  I already have made the decision that Gregory will not be buried.  He will be cremated and in our home.  I will not be tied to a gravesite.  I will have the ability to take him with me, wherever I go.  I have envisioned a second transplant.  I have "written" his obituary.  All of these things and more, race through my mind.  Unbidden.  I do not ask them to show their ugly mugs.  They simply exist.  I do let them run their course, have their head.  Hoping that those moments are short lived by doing so.  Which is why I might not be able to make the above statements in an hour.  This is the reality. 

Yet.  This moment, this day.  It's new.  'til later.  Gotta jet.

Posted via web from MindiTheMagnificent

He's suffering the effects of his treatment.

Alright!  I'm just going to crank this out.  Let me preface this, though.  Let it be know to all here "present"........  I am grateful for Gregory's life.  I realize that he is alive.  I realize that he is still here for me to hug and love.  I have nothing but love and respect for the families that I have met who's children have died.  The fact that Gregory is still living does not diminish how difficult this is.  Saying that everything is OK, simply because he is living, feels like disrepect to me.  Disrespectful to his struggles, our families challenges and what we have been/are going thorugh.  With that being said:

We are back in the hospital.  We were discharged last Monday, went back to the water retreat and things started to get worse.  He was yakking daily, not able to keep meds down.  By Thursday he was yakking six times a day or more.  I called the doc on Friday.  He asked me to hold his G tube feeds and see what happened, call him in the morning.  He wasn't keeping meds down.  Even with tube feeds being held.  He was/is yakking on simply TPN feeds, though.  Which goes through the IV.  It bypasses the gut, yet I believe it stimulates the gut, too.  Somehow.  Saturday morning he started yakking after I talked to doc.  He had asked that I give him a call that evening to let him know how the day went.  It didn't go too well.  By 6:30 that night we were packed and on the road, headed to the ER. 

Can you imagine what it is like to walk into an Emergency Department, 7:00 at night, on a Saturday, in the middle of winter, with a child who has recently had a bone marrow transplant and has ZERO immune system?  No matter how quickly they get us back, it's not quick enough.  The got us back to the pediatric area and we had to wait in that area.  No one approached us.  After about three minutes (I was crawling out of my skin!) I approached the staff and started to explain our situation.  "Hi.  My son is a bone marrow transplant patient and........."  I didn't even finish a sentence.  "We were just talking about you guys.  Is this Gregory?  You need to be in that room, right there."  THANK YOU!!!!  They were ready for him and were sooooooooo good about being extra cautious with every piece of equipment they used and everything.  It was awesome.  After his assesment, blood draw, urine sample, exam, verbal history......... several hours later we headed up to the Peds Oncology Unit.  After we got settled, bathed and hooked up to his IV pole, we finally hit the hay at 2:30am.  

Gregory is currently not taking ANYTHING by mouth and only one med by G Tube.  Everything else is going IV.  We are giving his belly a much needed rest.  We are ruling out every possible scenario one by one.  He is not showing ANY sign of a viral/bacterial infection.  Meaning he has no fever.  Monday the surgeon ruled out whether or not the G Tube was placed incorrectly and causing problems.  Monday we finally were able to obtain a poo sample.  We need one to test for any gut bug.  He hasn't had one since Friday (a poo) so I was very happy to get one at 8:15 Monday night.  I think we consult his GI doc next.  Except.........  I've been thinking about this like crazy.  I think he has Pancreatitis.  I'm going to talk to doc about it Tuesday morning.  You would think that it has already been ruled out, except it's rare in children.  Yet the symptoms fit like a glove.  *shrug*  It's worth exploring.

Gregory feels like absolute dog doo and is exhausted.  When he has a nausea, pain, yak attack he is getting Zofran and Dilaudid.  We are doing a complicated dance with his IV meds, too.  I have to admit, I'm quite miffed about it.  The problem is his Tacrolimus.  The pharmacy here wants the tacrolimus in a glass bottle, with special tubing and infused in a lumen all by itself.  Which only leaves one lumen for all his other meds and his 24 hour TPN.  Which means that we have to unhook his TPN in order to administer his meds.  Wait, his ampicillin is compatible with TPN, so that can be infused at the same time.  (Whoopie.  It's a 15 minute infusion.)  There is a possibility they are using a different brand of drug and it has different guidelines.  Possibly.  Except this is crazy.  In order to unhook the TPN they have to decrease the rate before they unhook it.  Which means......  never mind.  This is entirely too complicated to put into words, right now.  In Seattle Gregory had nine lines runing into his two lumens.  Three of them were 24 hour infusions.  TPN, Morphine & Tacrolimus.  They never had to unhook them in order to administer the freight train of meds he had.  Why is this a big deal to me?  Every single time we access his line, it puts him at risk for infection.  Right now they are accessing his line A LOT.  I don't like it.  Especially if it can be avoided.  How far do I push this?  I'm not sure, yet.  I don't want to be labeled as "that" parent, but I think I should.  For Gregory's health and my peace of mind. Don't know if I will, though.

I've had several conversations, lately, that I have looked back on and thought "Where did all that come from and none of it made any sense."  I am so immersed in the micro-cosm that is Gregory's care and health that I cannot think of anything else.  My brain is just mush.  If I say something really weird and stupid to you, please don't take it too seriously and give me a chance to redeem myself.  I'm stuck in this spot where I can't even see hope, joy or light.  Not just for us, but for everyone.  I'm negative and down right grumpy.  I've also been pretty stubborn.  I'm not feeling guilty about it, it's just what's happening right now and I'm ready for this Long Play to quit being a Super Long Play.  It's not going to happen, but I can dream.

I have simple dreams.  I want to be able to tickle Gregory.  Without worrying about pulling out his central line or g tube.  I want him to come running at me from across the yard and jump into my arms for a big squeeze.  I want to see him walk for more than two steps.  I want to see him eat.  I want to see him rough housing with his siblings.  I want to see him glow.  Gregory used to glow.  Not so much, these days.  We were talking about roasting marshmallows and making s'mores.  He remembers making them at the water retreat.  From the summer of '08.  We talked about making them again, this summer.  I mentioned that he might be able to swim this summer.  He immediately exclaimed "No!  [as he put his hand over his belly]  I have tubes!  I can't swim!"  I told him he can swim with the G Tube, but maybe he will get to have his central line taken out and he can swim, then.  I was going to ask him what else he would like to do this summer, but I was afraid to get his hopes up and not have them happen.  I certainly did not expect to be where we are at now, at this stage of the game.  I remember September.  September was soooooo good.  September was perfect. 

When doc was here on Sunday we discussed what could possibly be going on with Gregory.  His conclusion was heartbreaking, especially due to the way he said it.  "He's suffering the effects of his treatment."

I hate Childhood Cancer.

Posted via web from MindiTheMagnificent