Knock. Knock.
It's me.
From many years in the future. Crazy, huh?
Proof? Of course we want proof.
MindiTheMagnificent. Enough said.
Our well adjusted, crazy, chaotic and random self
Sunday, February 28, 2010
Dear us at seventeen, (Open Call. Open Salon)
Our well adjusted, crazy, chaotic and random self
Thursday, February 25, 2010
Diagnosiversary
One year. One year ago, today, Gregory was diagnosed with Leukemia.
Carrying him in my arms, we made the long walk, down the longest hallway I've ever walked, from our room in peds intermediate, to the procedure room, near the PICU. We placed his weak and sick little body on the gurney and stood back and watched. Watched as a team of staff hooked him up to plethora of strange things. We stood silently as the anesthesiologist began his sedation. Once sedated, we stood silently and watched, as they flipped his little body over. Pointing his hip to the ceiling. Baring his backside for all to see. Prepping the area with antiseptic. We stood there silently, I clutched Gregory's blanket, watching in horror. The curtains were drawn and we were saved from watching the actual Bone Marrow Aspirate. I remember reaching out for Larry's hand. I remember silent tears gathering in the corners of my eyes. Shocked that THIS is where we were. Terrified.
The staff had told us that if the marrow showed no signs of leukemia, we would remain in peds intermediate, until we figured out what was wrong with Gregory. If his marrow did prove to be Leukemic, we would be immediately moved over to Pediatric Hematology/Oncology. I find this hard to believe, but I must have had some kind of gut feeling. Before the procedure, I had packed and organized our limited possessions. In case of a move.
This was Wednesday morning and I had been with Gregory, ever since we were admitted Monday. Somehow I had gotten my hands on my laptop, not quite sure who had brought it down. Even at this stage, I had my knitting, my music and my internet.
The Bone Marrow Aspirate didn't take more than ten minutes to complete. A flurry of activity and we were left alone with a nurse, who was monitoring him. There were four of us. Myself, Larry, my Mom and Gregory. We stood around him, like a vigil. The results were rushed through. We waited, anxiously. Gregory had been sedated, we were anxious for him to come out of it. We were anxious for the results. We had about two hours of nervous and stilted conversation. Constantly watching the monitors, as Gregory slept off the sedation. He slept the entire time. This is when we discovered that the sound of Daddy's voice caused his heart rate to rise. I wanted nothing more, than to climb upon that gurney and snuggle him out of it. They wanted his airway free, so I had to stand at his side and hold his hand, grip his leg, rub his back, stroke his hair. Gaze at this precious face.
Towards the end of our waiting, Larry needed quarters to feed the meter. He prefers to park on the street. He was out of change and I knew I had plenty in my wallet. I took off, again, down that long hallway towards our room. As I approached the room, I noticed movement inside. A cart parked halfway in, halfway out of the room. I came to a screeching halt at the doorway and froze. Unable to catch my breath. Lights, blinking in my peripheral vision. My heart pounding so hard in my ears, I was sure you could have heard it had you been standing near me. The bed was elevated and stripped to it's rubber covered mattress. There was a staff member scrubbing the room. Our belongings, that I had neatly placed at the end of the couch? They were gone. Not an item in sight. At that moment
I knew.
I raced, again, down that long hallway. I looked at Mom. "Our stuff is gone."
She knew.
I explained to Larry what it meant.
Not long after, Dr Reynolds and his coordinator Jennifer entered the room, the doors were shut. Never a good sign. I hate it when people close the door after themselves. It's enough, the feeling of being trapped. let alone the premonition of really bad news. Jennifer stood quietly to the side and gave witness. I can't recall Dr Reynolds' exact words, something close is: "We've got a long road."
Suffocating, hiccuping, stiffling, chest searing sobs. Trying to breath and keep your cool. Wanting to unleash this beast that is now lodged, permanently in your solar plexus. Compressing your lungs.
The knee jerk questions. Chemo? Yes. Hairloss? Yes When? Immediately
Except: Not. Immediately.
This was not "regular' leukemia. This was not the leukemia that I had Dr Googled and discovered high rates of cure. This was not the leukemia that is diagnosed simply with a Bone Marrow Aspirate.
Gregory was stirring and waking up, more and more. He was stable enough to move. I gathered his little self and we proceeded, as if in a processional, through the maze that lead to Pediatric Hematology/Oncology. Numb, in shock, exhausted. We were escorted to purple room 308, right in front of the nurses station.
All of our belongings were there. The bed was turned down and covered with a new, soft fleece blanket. Our first "gift" from the world of Childhood Cancer. Next to the bed is a huge, wing backed recliner. I clung to Gregory and sat down in it. Not wanting to release him.
Christina.
Christina is a Peds Hem/Onc nurse. She had been floated off the Peds Hem/Onc unit on Tuesday, over to peds intermediate. Christina was our nurse on Tuesday. We clicked.
Christina was our nurse as we entered the world of Childhood Cancer. She followed us from "the other" world to "that one". She was gentle, informative. Patient. Frank. Perfect.
"Gregory's not sick. He just has Cancer."
The Only Picture From That Day
February 25, 2009
Carrying him in my arms, we made the long walk, down the longest hallway I've ever walked, from our room in peds intermediate, to the procedure room, near the PICU. We placed his weak and sick little body on the gurney and stood back and watched. Watched as a team of staff hooked him up to plethora of strange things. We stood silently as the anesthesiologist began his sedation. Once sedated, we stood silently and watched, as they flipped his little body over. Pointing his hip to the ceiling. Baring his backside for all to see. Prepping the area with antiseptic. We stood there silently, I clutched Gregory's blanket, watching in horror. The curtains were drawn and we were saved from watching the actual Bone Marrow Aspirate. I remember reaching out for Larry's hand. I remember silent tears gathering in the corners of my eyes. Shocked that THIS is where we were. Terrified.
The staff had told us that if the marrow showed no signs of leukemia, we would remain in peds intermediate, until we figured out what was wrong with Gregory. If his marrow did prove to be Leukemic, we would be immediately moved over to Pediatric Hematology/Oncology. I find this hard to believe, but I must have had some kind of gut feeling. Before the procedure, I had packed and organized our limited possessions. In case of a move.
This was Wednesday morning and I had been with Gregory, ever since we were admitted Monday. Somehow I had gotten my hands on my laptop, not quite sure who had brought it down. Even at this stage, I had my knitting, my music and my internet.
The Bone Marrow Aspirate didn't take more than ten minutes to complete. A flurry of activity and we were left alone with a nurse, who was monitoring him. There were four of us. Myself, Larry, my Mom and Gregory. We stood around him, like a vigil. The results were rushed through. We waited, anxiously. Gregory had been sedated, we were anxious for him to come out of it. We were anxious for the results. We had about two hours of nervous and stilted conversation. Constantly watching the monitors, as Gregory slept off the sedation. He slept the entire time. This is when we discovered that the sound of Daddy's voice caused his heart rate to rise. I wanted nothing more, than to climb upon that gurney and snuggle him out of it. They wanted his airway free, so I had to stand at his side and hold his hand, grip his leg, rub his back, stroke his hair. Gaze at this precious face.
Towards the end of our waiting, Larry needed quarters to feed the meter. He prefers to park on the street. He was out of change and I knew I had plenty in my wallet. I took off, again, down that long hallway towards our room. As I approached the room, I noticed movement inside. A cart parked halfway in, halfway out of the room. I came to a screeching halt at the doorway and froze. Unable to catch my breath. Lights, blinking in my peripheral vision. My heart pounding so hard in my ears, I was sure you could have heard it had you been standing near me. The bed was elevated and stripped to it's rubber covered mattress. There was a staff member scrubbing the room. Our belongings, that I had neatly placed at the end of the couch? They were gone. Not an item in sight. At that moment
I knew.
I raced, again, down that long hallway. I looked at Mom. "Our stuff is gone."
She knew.
I explained to Larry what it meant.
Not long after, Dr Reynolds and his coordinator Jennifer entered the room, the doors were shut. Never a good sign. I hate it when people close the door after themselves. It's enough, the feeling of being trapped. let alone the premonition of really bad news. Jennifer stood quietly to the side and gave witness. I can't recall Dr Reynolds' exact words, something close is: "We've got a long road."
Suffocating, hiccuping, stiffling, chest searing sobs. Trying to breath and keep your cool. Wanting to unleash this beast that is now lodged, permanently in your solar plexus. Compressing your lungs.
The knee jerk questions. Chemo? Yes. Hairloss? Yes When? Immediately
Except: Not. Immediately.
This was not "regular' leukemia. This was not the leukemia that I had Dr Googled and discovered high rates of cure. This was not the leukemia that is diagnosed simply with a Bone Marrow Aspirate.
Gregory was stirring and waking up, more and more. He was stable enough to move. I gathered his little self and we proceeded, as if in a processional, through the maze that lead to Pediatric Hematology/Oncology. Numb, in shock, exhausted. We were escorted to purple room 308, right in front of the nurses station.
All of our belongings were there. The bed was turned down and covered with a new, soft fleece blanket. Our first "gift" from the world of Childhood Cancer. Next to the bed is a huge, wing backed recliner. I clung to Gregory and sat down in it. Not wanting to release him.
Christina.
Christina is a Peds Hem/Onc nurse. She had been floated off the Peds Hem/Onc unit on Tuesday, over to peds intermediate. Christina was our nurse on Tuesday. We clicked.
Christina was our nurse as we entered the world of Childhood Cancer. She followed us from "the other" world to "that one". She was gentle, informative. Patient. Frank. Perfect.
"Gregory's not sick. He just has Cancer."
The Only Picture From That Day
February 25, 2009
Saturday, February 20, 2010
Final count 46/53 days Inpatient.
We are free-er, we are free-er, we are free-er. All my life, I've loved being unique. This last year has been just a little too much unique. I'd gladly settle for some average. Boring would be awesomesauce, too. We received our walking papers Monday afternoon. After four wagon loads full of stuff, an arsenal of prescriptions (yet again) and the cutest kid on a tricycle you've ever seen, we peddled out to the car and made our way to our Water Retreat. Enroute we met up with Daddy for a laundry/grocery swap. He got the laundry, I got the groceries. There was no school on Monday so Curtis and AnnMarie were with him. Gregory was desperate for them to come out with us. A spontaneous decision was made by Daddy (an incredibly brilliant one, too) that AnnMarie could come out with us and spend the night. She did not have a thing she needed in order to sleep over, but we made it work. At one point it was almost a deal breaker that she did not have her stuffed animal "Sparkle" to sleep with. She was quickly comforted with the thought that Gregory possessed enough stuffed animals to keep her safe and protected all night. Curtis, of course, fell apart since he couldn't come. I haven't mentioned this much, but he has been harder and harder for me to have around Gregory. Simply because at the hospital and at the water, he is trapped, he doesn't have many of his belongings and we have yet to establish any sharing boundaries. As far as Gregory is concerned anything on his turf is his. Rightfully so. Curtis just doesn't understand this. Curtis gets frustrated, yells, argues. He's such a big kid now, too. Then Gregory gets upset and stressed out. The emotions won't be any different when we are HomeHome, but we will have the advantage of everyone having their own turf and belongings. Sounds a little juvenile for an eleven year old? Maybe. This eleven year old? He oozes unique Most of which absolutely tickles me, the rest really stresses us out and creates chaos. Curtis' greatest benefits are a solid, expected schedule and a REALLY healthy diet. It will certainly be a huge adjustment period when we make it HomeHome.
Oops. Kinda digressed. So, AnnMarie came out with us on Monday and we had a ball. She was a perfect diversion for Gregory, while I unpacked. AnnMarie even voluntarily helped to unload the very full car. The two of them played, laughed and just hung out. It was so nice to hear "normal" chatter in the room and not IV pumps, beeping, various staff, over head "Code Blue. Respiratory. 4S Room 413, Bed 1". One thing that Sacred Heart does that is really endearing is the "Baby Bells". Everytime a newborn arrives they sound chimes through the PA system. Gregory and I notice nearly everytime, we kinda missed them at Seattle Children's. Before we left on Monday, we had to ensure that his labs were solid. Which they were, except we were waiting on the results for his Tacrolimus level. (Tacro is his main "GVH" med. It supresses the immune system. We take a blood draw right before a dose to determine the level of the medication in his blood. At the lowest point. The trough.) Usually Gregory's trough is between a 7 and a 9. Well...... Monday he hit a 23. Super high. We held his Tacro for the next 24 hours and had to go in, bright and early Tuesday, for a Tacro Level to determine what dosage he should be on. There are various, logical, reasons for him to through a high trough. I'm not going to get into them now, suffice it to say it's not unusual. AnnMarie had spent the night so she got to go to clinic with us. Talk about one excited young OffSpring. She does not have a shy bone in her body and introduced herself as "AnnMarie. I'M the big sister. Gregory's big sister." The pride that she oozes at being Gregory's big sister is heartbreaking. I have a feeling that Gregory has a lifelong champion. After Larry and I are long gone, I'm sure AnnMarie will be constanly reminding Gregory, "I'm the big sister." We were in just for a blood draw. This was done and we boogied out of there. Mom came out to sit with Gregory while I ran to do some much needed grocery shopping. I offered to take AnnMarie with me (I love spending time with ALL of my kids, one on one.) Gregory piped up and would not let her come with me, "Sissy! You stay here! You CAN'T go with Mommy!" I ran to the local store. While at the store I was cruising the aisles and thinking of all of Gregory's favorite foods. Things he hasn't been able to eat since November. Near the end of the trip I remembered Chips & Bean Dip. It was at this point that I started to loose it. I was standing near the magazine section with tears in my eyes. Before transplant Gregory could not get enough of Chips & Bean Dip. Before transplant we were trying desperately to get as much weight on him as possible. Man was it hard. We broke all kinds of dietary rules and gave him anything and everything he would eat. One of them was that horrid Frito Lay Bean Dip in a can. Up until the "sick" really set in (about 11 days post transplant), Gregory would down a whole can of that stuff in one sitting. *blech!* Thinking about the fact that I could offer it to him again, brought on the water works. I was buying GROCERIES for Gregory. While I was there I ran into the mom from a newly diagnosed family. It was rather strange and actually comforting to run into her. Strange, I know. Their daughter Anna, was diagnosed with Hepatoblastoma on January 27 of this year. If you can, please visit their CaringBridge and drop a note. They are new, reeling and lost. I know many of you remember those first months. Thank you.AnnMarie & Nana spent the afternoon with us and everyone had a blast. The clinic called to report his Tacro level, which was still nearly 12 and we changed his dosage to twice a day, instead of three times a day. Which meant that we got to drop TWO dosage times from his schedule. Almost all of his meds are every 12 hours. Tacro was the only one that was every 8 hours. Which meant he had meds at 8:00am, 4:00pm, 8:00pm and 12:00 am. Now we only have 8:00am and 8:00pm!!!! Still a ton of meds, but only twice a day. Yippee! (for now) The next two days were filled with lounging, sleeping, food, napping, food and lounging. Since he is on high dose steroids and I'm not sure how long the effects will last, I've let him have whatever he wants, for the last few days. (within reason & health, of course) His current favorites are shrimp that turns pink (fresh frozen, sauteed shrimp. Yes it turns pink when you cook it.), scrambled eggs, milk, french fries with "hot sauce" (ketchup) and noodles. With every bite of a highly anticipated "new" food comes the most interesting noises. "Mmmmmm. Oh. MMMMMM MMMMM. SOOOOO GOOOOOD! Oh. MMMmmmmmmm!" It's like he is discovering food for the first time. He's already polished off a 12 oz bag of shrimp. I need to get more, tomorrow, when Daddy comes out! I'm not sure how long this will last, so I am letting him revel in every morsel.Friday morning we had clinic. Labs & exam. His labs are rock solid. Everything from his counts to every line of his nutritional panel. Kidney & liver function, too. This is the first time he hasn't had supplemental magnesium, since transplant, and it's solid. Albumin, IgG. Everything. Why? Steroids. His GVH was affecting much of his bodies abilites to function properly. We finally received word from Seattle Cancer Care Alliance and the plan is to start him on Sirolimus. Instead of Tacrolimus. We discontinued the Tacro today and will begin Sirolimus on Sunday. He will start out at 0.2ml a day. We will go in twice a week for Sirolimus levels to get him to a theraputic level. Once that is accomplished we will begin another, very slow, nine month steroid taper. Only time will tell. On the way home we grabbed McDonald's. The first he's had since November. He ordered a cheese burger, ketchup only. When I gave it to him, he picked it up, pointed at it and said "Mommy! I didn't want THAT!" He was pointing at the hamburger. I carefully peeled the burger from the cheese and he scarfed down a cheese & ketchup, bun sandwich. This is what steroids do. Carbs, carbs and more carbs. One thing that Sirolimus does is raise your triglicerides. The fat in your blood. Once we begin it, I will need to heavily monitor his fat intake. Thankfully his glucose and sodium levels seem to have settled and he doesn't need any intervention. Delicate dance, huh? We also spurged Friday night and he got his "spicy pizza". Delivered cheese pizza. Gotta get it while we can. We are still settling in, getting used to the new routine. He is far more active and getting around so much better than he did eight weeks ago. We are slowly upping the calorie content of his G Tube feeds so he can spend more time unhooked. He loves to help me around the house, or just sit at the table while I'm working in the kitchen. Gregory is beginning to re-appear. Then there are the severe, immediate and intense mood swings. Demanding & impatient. Sweet and cuddly. Emotional and weepy. Angry and frustrated. All within a thirty minute time period. I'm trying to let him be and show him patience. When we get HomeHome, I'm going to need to spread my time between all three kids and Gregory is going to have to re-learn how to share my time. It's gonna be painful for everyone, but it is necessary. The hardest part will be sleeping time. We have slept next to one another for nearly every night of the last year. It will be hard on both of us. I LOVE sleeping with my OffSpring. All of them. I'm looking foward to climbing into bed with Curtis and AnnMarie, even if it's only a couple of hours. Not quite sure how Curtis will like it, but I'm going to do it anyway. I have a feeling that he won't mind, at least in the beginning. Here we are, turning another page. With no expectation of how this therapy is going to work for Gregory. I've found that expectations simply leave me empty and saddened. I take each moment and embrace it for what it has to offer. Be it good, bad, indifferent. It is what it is. I'm quite impressed if you've managed to stick with me this far. Not only in this entry, but through these long 12 months. Yes, we are almost to our diagnosiversary. First one. Never in a million years did I think I would be honoring these things. Especially death aniversary's. I do, though. With open arms and a warm heart. These moments need to be honored and remembered. Great pivitol moments in our's and our children's lives. I don't know what tomorrow will bring, but I do know that I have a family that loves me and I them and we are together. Even if only in our hearts, for now. We love you, Daddy, Curtis & AnnMarie. Miss you like crazy. Can't wait to be together. 'til later, gotta jet.
P.S. Curtis has a head cold. Crap.
Also. PSA: Do not drop your Kindle. Ever.
Monday, February 15, 2010
And so it goes.
Another anxious and sleepless night. We have plans to received our "walking papers" tomorrow. Monday Feb 15. (Which, now that I look at the clock, is today.) At first blush, the response to seeing Gregory this last week is to go "Wow! He looks GREAT!" I'm feeling like I SHOULD be excited and joyful about his turnabout. The truth is, I'm far from happy. I'm angry, agitated, exhausted, frustrated, angry. Did I say angry twice? I'm angry and pissed off at this disease. Not graft versus host. Childhood Cancer receives ALL of my anger. The last, roughly, four months have been challenging. On so many levels. We are 10 days away from his diagnosis date. So far, one year has been ripped from his life. At his age, that's 25%. One year that we cannot get back, reclaim or recoup. His first year of pre-school. A full year's worth of special occasions and school events with his sibs. Here's the kicker. We are far from done, too. With his increased steroids, we are back at just-after-transplant medication levels. Significantly higher on a few, too. He's even more immunocomprimised and the longer he is on steroids, the higher the risk of steroid related side effects. Which are nasty. Steroid induced diabetes, high blood pressure, loss of bone density, just to name a few.
His "doing great" status is a direct correlation to his steroid dose. He no longer has stomach cramps, his diarrhea is gone, he hasn't heaved in over a week, he is almost off TPN, he is tolerating higher and higher rates of his G Tube feeds and he is happily eating "real" food. All due to his level of steroids. Yay? Not really. If this was a course of treatment that didn't have it's fair share of hefty side effects, CERTAINLY, I'd be excited. Except it's not. Not only that, but we have no idea what is in store for us. We are anxiously waiting for Seattle Cancer Care Alliance to get back to us with what our next treatment plan will be. The gut and colon biopsy results have come back and showed no signs of GVHD. No surprise there. We are about to embark on a roller coaster ride of "Will this work?". There is nothing available that can tell us which option will work. We just keep trying things and hammer at it, in hopes of convincing his marrow/blood and his body to live together, peacefully. At this point, I don't even know if they will begin his re-immunizations this summer. Mustn't forget THAT part. Gregory must receive ALL of his immunizations, again. He has no immunity to anything. He needs to re-acquire it, when the time is right. So, if you have measles, mumps, rubella, chicken pox, diphtheria, tetnus, polio, hepatitis A, B or C and whateverelsetheygetimmunizedfor, please steer clear. Thank you, very much.
I know this to be true: We need to get out of this hospital. It's driving me insane. With Gregory's increased steroids, his moods and behavior is reactive (more like radioactive) and fluctuates on the turn of a dime. I need to get him where he can rant, rave and scream all he wants. I feel a certain sense of responsibility to keep his noise at a certain level and it's not easy. We need to be able to just simply cuddle for hours at a time without the interruptions of someone in our room every hour. He has been experiencing scary dreams, too. For the last several nights. He can't/won't tell me what they are about, but he does let me know he has them and I comfort him through them. His mood changes are rather volatile and require immediate addressing. Otherwise his temper escalates. This is not the result of an over protective mother. Gregory knows about patience and has plenty of it. These meds are just really whacking him out, right now. Which means I am frazzled and on edge, too. We both need a healthy dose of privacy and peace.
Monday is day 46 of 53 spent inpatient, since December 23rd. We are ready to blow this Popsicle stand. If we are released today, we will be back Friday for Dr F to take a look at him and see some test results. Hopefully by Friday we will know and maybe even begin his long term treatment plan. What I mean by "long term treatment plan". I don't know. From what I can gather, kids with similar donor matching and symptoms, this looks like a 3-4 year time frame to "normal". Heh. Did I just say "normal". I meant him being able to eat solely by mouth and have firm stools. With occasional life long flares. Illness and stress induced flares and flares that happen just because. Have I mentioned that this is not the only "side effect of transplant"? Yes, I am spiraling a bit. It is going to take a while for me to get through this and be OK with what Gregory's future has in store for him. Currently, I am walled off and closed off. My circle of security is terribly small.
I'm far from ready to step back into society. This past Thursday I dipped a foot in the water. Every year our kids' Montessori classrooms go Ice Skating for Valentine's day. I used to ice skate and this is one of my favorite school events. The skating rink we go to is out-of-doors. Therefore I felt fairly safe from "cooties" and decided to attend. I drove down to the rink and met the kids there. We have about 150 students, six teachers and the chaperons that attended. A lot of people. It was the first school event that I've been at since last February. My anxiety was through the roof, not only because of the germ factor, but of seeing the parents and teachers and talking about Gregory's condition. Trying to navigate that line, "Yes, he has no evidence of Leukemia since his last bone marrow aspirate. But........." I think we don't know of Childhood Cancer families because we become reclusive. Sticking with our core of people who "get it" or who try really hard to "get it" and don't pretend to "get it". Curtis was off in his own little world with his friends, but AnnMarie stuck to me like glue. It was so nice to spend a few hours with her, in a different atmosphere. At one point I was standing alone, just watching all this "normal life" activity playing out before my eyes. Kids and adults, laughing, playing, chatting and just going about their daily lives. Without a cloud over their heads. Then it hit me..... maybe not. One of our Montessori families Father's had died, just about 10 days prior. From spinal cancer. This families life has been rocked and yet their daughter was out on the ice, skating her little heart out. We really don't know what's going on in other people's lives. I also found out that another community member had died. Another father, husband, son....... It seems that once something like what we are experiencing, has touched your life, similar circumstances seem to pop up. It's almost as if like is gravitating to like.
We have lots of work ahead of us and I have absolutely no idea what to expect. This is not a situation where I can send my request out to The Universe and expect to have it filled. I can't work on my inner self in order to create health and healing for Gregory. Gregory will regain health and heal when his body and the right combination of medications is found. It could be in the next few months, it could be in the next few years. We will take each day as it comes, rejoice in our own way and plod on. You can't get much more complicated than DNA. The Human Genome Project took 13 years to complete and is still in the works. Gregory has two different sets of DNA in his body. Looking at it with a really wide angle lens, he IS doing quite well. I just find myself wishing we had never met Childhood Cancer. Can't fault me for that. 'til later. Gotta jet.
Monday, February 8, 2010
A different kind of exhausted.
Will this one actually get posted? I can't tell you how many times I've sat down, trying to form the words, trying to post an entry. The words get all jammed up and the only thing that comes out is stillted facts. It feels journalistic and plastic. Trying to fit everything in my head into a decent length is impossible. We are on day 38/45 days spent inpatient. Our fourth admit since December 23rd. We finally "moved in" on Monday, February 1.
The decision was made that we would not return to Seattle for cGVHD diagnosis/treatment. While this really is the best decision for us, I admit a small disappointment. I was looking forward to the idea of returning to the SCCA and Seattle Childrens. Only because we were there for five months and developed relationships and attachments to those that cared for us. It also would have been great to see Chuck and Victoria, again. Sunday the 31st was Dr Reynolds' last day. He stopped by Monday morning, socially. I gave him a huge hug and fell apart as he walked out of the room. Here is a man who spent his life working with the life & death that comes with Childhood Cancer and other Blood Disorders. His wife gave him a mission (should he choose to accept it) for his first day off the job. This man has left his home, stopped at McDonald's for a coffe & breakfast burrito, then arrived at the hospital to serve our families, every day. I mean every day. Regardless of who was on call, Dr Reynolds saw his patients. During the seven months that we have been seeing him, we only saw one of the other docs once. He was out of town. On the first day of his retirement, his mission was to obtain a bungee cord for the garbage can. He made sure that I had his phone number and assured me that it was OK to call him with status updates. I plan on calling him sometime this week. He was not with us during the actual transplant and immediately following, but he was out diagnosing doctor. He will miss our one year diagnosiversary. He will miss Gregory's First Re-Birthday. (Transplantiversary) These are huge milestones and he will not be here to honor them with us. He will most certainly receive a phone call, though.Monday brought the beginning of a new chapter. The remaining docs are Dr Judy Felgenhaur and Dr Angela Trobaugh. They will be adding a third doc, when the right one is found. For the time being, the two of them will be caring for everyone. It's been mentioned that Dr Judy will be our primary and we will see Dr Trobaugh when Dr Judy's schedule does not permit. For now, they both round together Monday, Tuesday and Friday. Wednesday it is Dr Judy and Thrusday it is Dr Trobaugh. Monday was amazing. Not only were Dr F & Dr T with us, but our two nurse coordinators were with us for that first "new doc" visit. Jennifer and Stacy. Four amazing women, myself and our nurse. The air was electric and had a sense of Warrior Womyn Power. There is a mission and we are up to the task. First thing on the agenda was to get as many drugs to IV as possible and have a GI & Colon scope done. The only meds he is currently taking through his G Tube are Tacrolimus, Penicillin VK, Dapsone and Dr F added live bacterial culture something-or-other. He was scheduled for his scopes on Tuesday, but we were bumped to Tuesday at 7:30am.At 6:00am Tuesday our nurse had to wake us up to let us know that they would be coming to get us in 15 minutes to go to surgery. Not quite the kind of wake-up call I prefer. We scrambled to get everthing ready, including getting an antibiotic via IV into Gregory. Transport came to take us down to the surgery area and we were off. Gregory is currently receiving an anti-nausea medication three times a day, via IV. They came to get us before he was due for his morning dose at 8:00am. Right before they took him back for his procedure, he heaved. Since vomitting while anesthitized is a very bad thing, he received his Reglan/Benedryl AND Zofran, right before sedation. For his sedation they used regular old gas. (I wish I had the technical name for it, but I don't.) He came out of sedation groggy and grumpy. He heaved right after, too. With everything that he had in his system, he slept for most of the day Wednesday and through the night. The GI Doc brought me pictures of his gut and colon. *drum roll please* Gregory's gut looks beautiful. Which is a double edged sword. There was no visible evidence of cGVHD. Biopsies were taken and we should hear back on those, shortly.
Thursday, Gregory was started on his G Tube feeds. I think Dr F wanted to see exactly what he could/couldn't tolerate. We started Gregory on his formula feeds at the amazing amount of 1ml/hr. Yes, you read that correctly. One millileter an hour. Tiny, tiny, tiny amount. Well....... Six hours after beginning these truly trophic feeds, Gregory heaved up all six millileters. No surprise to me. Later that night he also heaved at 11:00pm. Our nurse happened to be in the room and he looked at her and said, "I really didn't like that." Imagine that. Friday Dr F wanted to try Pedialyte instead. Same rate. Well, we got eight hours out of it instead of six, but the result was the same. All eight millileters came rushing out. During Friday rounds, we had a discussion regarding Gregory and his symptoms. Diagnostically we have not found enough evidence of cGVHD to support his symptoms. Which, unfortunately, in the world of cGVHD doesn't really mean diddly squat. Symptomatically he is presenting with cGVHD. So. We are treating it as cGVHD and if he responds then we have our answer. (See why it's called Practicing Medicine.) If he responds then we will discuss long-term treatment options. The first step was to up his prednisone dosage. Ugh! He was taking 13mg every other day. He currently weighs 17kg and the guideline is 1mg/kg. Considering that he has steroid weight gain, they are using 15kg as his base weight. Which means 15mg. Gregory is now receiving 15mg twice a day. Essentially we have quadrupled his steroid intake. He seems to be handling it well, but I do work really hard to keep him on an even keel. I also think that benedryl three times a day is helping to counter act the steroids. The steroids seem to be working. He has an appetite and did not heave on Sunday. He is not eating much, which is good. I do not want him to think he can eat and then get sick because he has eaten too much. Sunday it was 1/4 piece of bread with jam, a tiny nibble of saltine cracker, some ice chips and a few sips of Non Fat Lactose Free Milk. It's a start.
Wednesday, February 3, 2010
Welcome to Holland
I've seen this before, but always comtemplated it in the context of "someone else". Never realizing that it could day apply to me. I'm not quite at the place where I can embrace this, entirely. Someday. It's beautiful, none the less. Thanks for sending this to me James. Jedi Knight.
WELCOME TO HOLLAND
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
© 1987, by Emily Perl Kingsley. All rights reserved. Reprinted with permission of the author.
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