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We have had numerous requests for our address. While love, support and encouragement is directed at The Greginator, the siblings are of equal importance. If you would like to send somthing to Curtis and AnnMarie, we would be forever grateful. Here is our contact information:
The Greginator ~ Gregory Bibb
Curtis Bibb
AnnMarie Bibb
PO Box 31282
Spokane, WA 99223
Curtis is 10 and in the fifth grade. AnnMarie is 7 and in the second grade.
Thank you to everyone who has/will touch our lives. Everyone of you will forever be a part of our families history.
Rob is oh-so-wise......
VIRGO (Aug. 23-Sept. 22): In one of his short poems, John Averill
(twitter.com/wiremesa) describes a scene that I think captures the
essence of your current astrological omens: "Today is the day of the
photo of moonrise over Havana in a book on a shelf in the snowbound
cabin." Here's a clue about what it means: The snowbound cabin is where
you are right now in your life. The moonrise over Havana is where you
could be early in 2010. How do you get there from here?
Eleven years ago, this morning, I went in to see my OB. Not knowing that today would be THE day. Curtis arrived at 7:02pm. Happy birthday, munchkin. Every fiber of my being wishes I could be with you, today. I love you.
*Gregory is doing better. Thanksgiving was bittersweet. I'll post more at a later time......
Ya know, the easiest way to navigate this Childhood Cancer road would be to stick my head in the sand, plug my ears and sing *lalalalalalalalala*. It would. I'm not wired that way, though. Today is our offical nine month diagnosiversery. Gregory was admitted on February 23rd and his bone marrow aspirate was two days later, on the 25th. Nine months is just a drop in the bucket. I've received bad news a lot these last few weeks. For a while I was thinking that it's just a bad time, right now. I'm beginning to change that line of thinking. I keep getting bad news. Which leads to a shift in my thought process. Trying to accept, live with and be at peace with the idea that frequent bad news is part of all this. How does one do THAT? I don't have an answer and don't expect one to be forthcoming, anytime soon. I could just check-out of this constantly growing community and wash my hands of it. Can't do it. It's not an option, for me. There is a driving part of me that requires community. A coming together of shared experiences, mutual understanding and support. While I can't say to fellow cancer families "I understand what you are going through." I can say "I get it.". Every experience is unique, as unique as every child. There is incredible comfort and security in being able to look another cancer parent in the eye and recognize the emotions that flit across the surface. To be able to have a casual conversation about our experiences and not see the other person recoil in horror. 'Cause it is horrifying and before diagnosis, I would have recoiled like crazy. To know that when I open my mouth the other person is not going to nervously redirect the conversation to something safer to discuss. It's human nature to do this. I get it. Sometimes we all need SOMEONE to be present, listen and witness what we have to share. THAT is why I stick around. Not because I enjoy getting sucker punched with bad news, but because we need each other.
While Gregory and I were in Seattle we met this incredible kid. I say kid, but he was an adult. 18 or 19, I think. The details get kinda lost, we met so many families. Paul had survived Lymphoma, bone marrow transplant (I think. I'm pretty sure, though.) He received radiation as part of his treatment. He develped Leukemia, secondary to radiation. Not that there is a good leukemia, but he had the bad kind and needed another bone marrow transplant. When we met he had already had his second bone marrow tranplant and was struggling with GVH and general "sickness" issues. They had a really hard time getting his blood pressure under control and the medications he was on caused some gnarly insomnia. He would roam the halls, late at night. He had this really great t-shirt that said "Fuck Cancer". My sentiments exactly. We formed a friendship. It's gotta be rough to be an adult, yet be in limbo. He was treated at Seattle Children's with all the kids. He left Seattle not long before we did and went back HomeHome. Just this morning I received an email, letting me know that he had died Saturday night. The details are sketchy, I haven't had a chance to talk with his cousin, yet. It looks like he relapsed and was sick, too. Fluid in the lungs and brain damage from infections. .............. I don't know what to say, next. There really is nothing that helps. My knee jerk reaction is to jump on my soapbox and BEG everyone to get active and seek funding for Pediatric Cancer research. One of these days I will put together a page on "How you can help." Not now, though.
If you haven't heard already, we had the longest day, yet, at clinic on Monday. We arrived at our normal 8:00 time and proceeded to get ready for blood draw and IViG infusion. Well....... we have been having troubles getting his central line to draw. It flushes with ease, though. Monday they could not draw any blood out of it, so we injected some TPA, thinking it was a clot somewhere and waited for it to work. An hour later, no luck. Doc was consulted and it was decided that we needed a line study to determine what was going on. I have no idea what was going on in the hospital, on Monday. Obviously Gregory's need for a line study was a pretty low priority. We waited. And waited. And waited. Then we waited some more. And waited. During this time we discussed his gut issues and decided to try a different "food" for his feeding tube. We are now using Elecare, which is totally broken down. Hopefully Gregory will absorb this food much easier, give his belly a chance to rest and recover. He is being slowly introduced to this food. 20ml/hr for 10 hours, 40ml/hr for 10 hours. 4 hour break. 40ml/hr 10hrs, 50ml/hr 10 hrs. 4 hr break. 50ml/hr for 10hrs, 65mls/hr for 10hrs. 4 hr break. 65ml/hr for 20 hrs. 4 hr break. (BTW~ There's 30ml in an ounce.) I've already seen a significant change in his AM stool. With less stooling, too. Then again, he is receiving a significantly smaller volume. The true test will come as the volume increases. If this doesn't work, the next step is TPA, which is infused via his IV. Bypasses his gut altogether. We also discussed his incremental weight gain. He's up another .2kilograms. 15.4 now. His calorie intake has been consistent. As we were discussing this, Gregory was curled up, laying down in my lap. Doc asked me if this was common behavior. It has been. He hasn't been off the bed to often in the last few weeks. Doc then attributed his weight gain to being sedintary. Ah Ha! Makes complete sense. Thank you! Finally around 2:30ish it was time for his line study. They took us down to radiation and Gregory got to lie on this long skinny table that had an x-ray camera that could pass over his body, while taking "movie" x-rays. There was monitors at the bedside that he could watch the pictures, while they were doing it. They injected dye into both lumens of his central line and watched what it did. It was really cool. Meanwhile, he is totally chatting up the techs and they are getting a much needed kick out of it. They had even brought down an Anesthesia nurse, just in case he needed something. Nope. Didn't need it. She discovered this herself and looked and me and said, "Well, the only thing he could have had was Versed, anyway." I looked at her and said "Nope. He can't have Versed." Gregory has a paradoxical reaction to Versed. We didn't need her, but it was kinda nice to see a familiar face. She has worked with us, before, during his other surgical procedures. (side note: I really wish they would look at his chart BEFORE seeing the patients. Nothing like suggesting a drug that your child cannot have to instill a sense of security. NOT! Yes, yes, I know. They would have consulted the chart before administering anything, but.......) The test showed that he DID NOT have any kind of obstruction. What it did show was that when you drew back on the line, surrounding tissue was being pulled up into the entrance, thus not allowing any blood to flow through it. This could be due to several reasons, the line could have shifted or with his additional weight gain, it is causing the area to be compressed. The only solution to this is to place another line. Which means surgery. Which means risk of infection. Gregory is at a point where he does not NEED a central line for blood draws. Yes, he does receive them weekly. We CAN still use it for infusions. This is good. So. He now has to have arm pokes. Ugh! After all this, we went back up to the clinic and waited for IV therapy. They showed up and had to poke him in both arms to get the amount of blood we needed. We are still doing weekly blood cultures, on top of all his other tests and it requires a substantial amount of blood. It was traumatic and I'm sure our weekly visits are going to be filled with anxiety, now. Argh! Something I was desperately hoping to avoid. Which means we certainly won't get an accurate blood pressure, anymore. Monday's was up AGAIN. 134/75. But came down, in the evening. Gregory's threshold for IViG infusion is 400. Doc has requested that we had IGg level results before transfusion. If it was below 450, he would be infused. Which meant we had to wait some more for results. Results were 441. Which meant he needed IViG. Duh! At this point the clinic was closed and we were shuffled over to the inpatient unit for his transfusion. We were settled into our original room, 308, the room we had back at diagnosis. After vitals, Tylenol and Benedryl, it was finally time to start the infusion. It was 6:30pm. The infusion went pretty fast, he slept through most of it and we were cut loose at 9:30. Then the drive back to our Water Retreat and we were settled by 10:30. All told it was a 15.5 hour day.......
I feel like we are making small progress with Gregory's gut. The next several days will be a challenge, though. Daddy and the kids are coming out on Thursday and we will be having a Prime Rib Thanksgiving. We are not a turkey loving family, but man do we love Prime Rib. With Greogory's gut he is not able to eat a lot of table food. I have even cut out dairy. You don't realize how much you eat had dairy, until you can't eat it. Today mom is coming out and I will have a chance to run to the store and pick up some Lactase so he can at least have some of what he loves. (Chocolate MIlk & Cereal) The family will be coming out again, on Sunday. Curtis' birthday is next Tuesday and we will be observing it then. It's just too hard to try to get together during the work/school week. It's going to be a busy stressful few days for Gregory. I just hope he weather's it well. As always, time will tell.
As you are all gathering with your families this Thursday (at lest those of you that are in the US or abroad and observe Thanksgiving. AKA: Travis) rejoice in your gatherings and be glad. Make decisions that are good for you and your families, show your love to one another and remember those that are not able to be present. Share memories and make new ones. Remember too, that you don't need Thanksgiving to do this. Everyday is an opportunity. My greatest gift this year is Gregory's life. The medical advances that allows him to still posess life. Not just a mere being alive, either. Happy Thanksgiving to every last one of you. 'til later. Gotta jet.
This week has been so HARD. So many things happening. Things of which, I have no control or say in. Sounds like life, doesn't it?
This is my little pity party. Please play along. Thank you. You would think that this part would be the easiest. It's not. It's just as challenging as all the rest, if not more. Gregory and I have nothing but time, these days. The daylight hours are far too short and I sleep far to little. Noting but time to think. Time to worry. Time to contemplate. Time to wonder. Time to greive. Time to imagine. There are so many families, families living with Childhood Cancer (Aplastic Anemia, too.) that are having such a rough time. Gregory is OK, but could be so much better. I've said it before, no matter what he COULD be experiencing, the reality isn't any easier.
I knew we would be having peaks and valleys. Living it is another story. His GI Graft Versus Host is really giving him a hard time. We started his B&B (Budesonide & Beclomethason. Topical steroids) last Friday. The only relief he has received is that he has less gas and no more stomach cramps. He still has diarrhea (several times a day), is nauseated, doesn't have an appetite and now he is having breakdown in the diaper area. Enough that his sores started to open up and bleed, today. Which is not good. An open wound in that area is ripe for infection. It hurts so bad to change him that I've been too lenient with his diaper care. Today I had to apply the smackdown and tell him how it was going to be done. He does have a little bit of an appetite, but I'm afraid to let him eat anything. Afraid that it will irritate him more and cause him more pain. Which means I'm telling him "No" to most food. Add to that, the fact that he puked out another nG tube, last night. Which tells me his stomach is still really sensitive. We had another power outage Friday night. It went out about 11:30, scared Gregory. He ralphed at 12:30. The last several weeks, he has been feeling so off that all he wants to do is be close to me. Preferably touching, laying in my lap. He's been very sleepy, too. At least for the last few days. I've been wracking my brain, trying to figure out why. Any change in his demeanor can mean something big. He started blood pressure medication on Monday. For the last several weeks his pressure has been elevated. So, starting medication was a logical, evidence based, decision. Home health came out today to place a new nG tube and before we started I asked her to take his pressure. Thinking this was a possible culprit, I had withheld his blood pressure medication today, knowing I would be getting a reading. Monday his pressure was 121/84. Today it was 94/58. Without medication. I've been trying to think of a way to get more accurate reads. I'm wondering if the early morning clinic visits are superficially elevating his pressure. Yes, I could purchase a little hand held automatic device, but that's pretty expensive. I asked home health if they would loan me a cuff and just teach me how to do it. Manual reads are far more accurate, anyhow. I already own a stethascope. I use it to check placement of his nG tube. Make sure it hasn't migrated out of his stomach. (I do this by using a medication syringe inserted into the end of his tube, place the stethescope over his stomach and push air through the tube. You can hear the whoosh of air as it enteres the stomach.) We have clinic on Monday, along with an IViG infusion. I'm hoping to get some help and answers for his GVH. The kid needs some relief.
All in all, we are doing good. I've just had a few too many moments, lately, where the reality of all this is flashed before me in Technicolor. Moments where we are going about our routine and I get a flash of "do you really realize what you are doing? This is soooo not normal!". Which is at constant odds with "He is doing so well, comparitively. What are you complaining about?". This cancer beast fractures families. Throws everything to the four winds and keeps it there. No matter where you are at on the continuum, you feel like an observer of what used to be. There are parts that I really miss. Yet, they are simple things. Being with Larry, Curtis and AnnMarie, under the same roof, is the biggest. Actually the only one, for now. It doesn't get to me all the time. Just in those Technicolor moments. I know Gregory feels it, too. When we ran to our HomeHome pharmacy to pick up a med, he recognized it and chatted about the neighborhood. The very next morning, he sat up from waking and started yammering about "Nana's House". First time he's done that. He remembers, too. I watched Mozart & The Whale, this week. It was filmed in Spokane and not in the usual way where you see a glimpse of your hometown in a movie and go "Hey! That was Spokane." This entire film was entirely Spokane. Gregory recognized Riverfront Park and the carousel and got teary eyed. This week has been full of moments like that. It's also been filled with plenty of love and tenderness, too. Sitting here, snuggled up with him is beyond pleasant. The other day he said to me, "Mommy. I love you. Really badly." Said it again today, too. Lately he has been sleeping curled up right next to me. Like a little shrimp. Nestled in any curve he can find. He's even been wrapping his little arm around my neck, while he is sleeping. While it is sweet as can be and I LOVE it, I can't help but wonder what is compelling him to feel the need to do this. How is his little brain processing all this. I'm realizing that he will not, magically, cross the one-year-post-transplant mark and emerge unscathed. I knew he wouldn't, but seeing it is different. All three of the OffSpring are going to require some pretty heavy hand holding and assistance. For some time.
There are three families that are very heavy on my heart. Parker. Maddy. Gregory H. I don't have the vocabulary to express how I feel, right now. What I can say, is that I don't know where to put, what I do feel. They are having such a rough time. If you feel it, please drop by their pages and drop a line. I KNOW that every word makes a difference.
This is a pretty down post, but it's where I'm at, for now. Don't send the troops and get all paranoid, though. It's well in hand and we do have plenty of fun, giggly time. As Larry says: "It is what it is." And it is. 'til later, gotta jet.
BTW ~ 272 days since we started this. 195 days since we've been home. 164 days since transplant.
Anything but THAT.
Yep. Signed up for posterous. Not quite sure how to use it, yet. I think it is going to be grand, though. Test. test. test.
Larry and I made a decision this week. Gregory and I will be staying at our Water Retreat through the New Year. At least.
I've been thinking about how I am going to explain our decision. I feel the need to document how and why we are making these choices. I've spent countless hours, wondering how these years are going to affect our OffSpring. What kind of lasting damage will be seen or, not seen but silently suffered. There are several reasons I write. One: simple documentation and posterity. Two: Keep friends, family and anyone who is following us informed of Gregory's progress. Three: A voice from the past, hoping that the OffSpring will have a glimmer of what this was all about. All three of them. Four: It's fantastic therapy, for me.
Taking all of these reasons into consideration, it's VERY difficult to write to every category. I find myself wondering if I should express certain opinions and beliefs. Who am I going to offend? It shouldn't matter, yet it does. My beliefs and values are strong. The thing that I NEED to express is the fact that they are MINE. When I express beliefs and opinions, I am writing for categories three and four. These words are NEVER meant to offend or pass judgement. These are my words, thoughts, beliefs. With that being made clear, I need to write about the Holidays.
One of the main reasons for Gregory and I staying away from home through the holidays, is because of Winte Break. IF we felt safe enough to venture back home, it would be on heels of Winte Break. The thoughts and images that come to mind are of the five of us, trying to learn how to live together again, during sixteen days of full-time five people in the house. So very daunting. Add in the pressure of the holidays and you have a pressure cooker set ready to burst. A large part of me really hates the Holidays. The expectations, the commercialism, the need to make it "perfect". The fact that everyone scrambles around for roughly 12 hours of Christmas. The feelings that we are supposed to have about Christmas? I want those feelings, emotions and expressions 365 days a year. I want the freedom to give a gift of love to someone any day of the year and not feel obligated to do so, one day a year. Nor do I want to feel guilty for NOT expressing my feelings to someone on that ONE day a year. Sadly, most of are raised to believe that this is the season that we do it. I've come to the truth that my life is governed more by the seasons, that the dates on the calenday. This time of the year, I want nothing more than to hunker down with my family and closest of friends and quietly hibernate. Cook, bake, read, craft (read: knit). Then you bring the whole idea of traditions into it. Ugh! Talk about pressure. How about the simple tradition of simply being together. I would like my children to have a variety of experiences. Then giving them the freedom to pick and choose how THEY want to honor and celebrate, as adults. What's the point in doing something only because "That's the way it's done.". Yes, my perspective is vastly different from the majority. This isn't a new way of thinking for me, though. Which is why I am not grieving over our "lost year". Yes, this year things will be vastly different from years in the past. That doesn't mean it's not as precious or meaningful. Remember though, today is no more precious than December 25. At least in my eyes. Yes, Thanksgiving, Christmas, New Year's are all days when we communally give thanks, honor, rejoice and celebrate. I think we should to that every day. Always have. Childhood Cancer did not change my views on that.
I guess you could say that this experience has truly forced me to accept the freedom to live moment to moment and day to day. "Freedom?" you say. Yes. I no longer feel the obligation to fulfill someone else's expectations. Now, having a conversation with someone regarding not fulfilling an expectation is a different story. When someone asks me "What are you doing for Thanksgiving?", I'm really not too sure, yet. I have an idea. Larry and I have touched on it. Nothing is firm, though, and that's OK. Do you know how freeing that is? To know that no matter what it eventually looks like, it will be OK. Whew! When it comes down to brass tacks, the fact that we are here, together, alive and breathing is reason enough to give thanks, honor, rejoice and celebrate. That is certainly part of my new perspective.
Now imagine all the rest of his care, that's not mentioned here, the holidays, the other OffSpring, a husband, family, friends and the above thrown together. Toss with a healthy dollop of expectation. Serve with a side of tradition. What do you get?
Strip it down to the bare necessities and rejoice in the fact that the bare necessities are beautiful, in and of themselves. 'til later, gotta jet.
- Location:Water Retreat
- Music:Crosby, Stills & Nash ~ Southern Cross
Every once in a while, I start climbing the walls. While this isolation is far from debilitating, it's so very lonely and well........ isolating. We were in a really good groove. Weekly clinic visits, weekly visits from mom so I can go to the grocery store, Larry and the OffSpring stay over periodically. Then Gregory started feeling yucky. It's not that I was taking his "health" for granted, it was just kinda starting to feel a little normal.
I have no idea what is going on "outside". Other than what I glean occasionally from the interwebs. I feel completely cut off from Curtis & AnnMarie's school. My social circles? *poof* It's not that I expected to step back into everything. Far from it. It's just that being out here, feeling so remote, is not for me. I think I would fare better in a busy area. Yes, the water and the peace and quiet is lovely and all. I have discovered that I really am city girl. Or at the very least, a busy communal living girl.
I thought that I might satisfy some of my social need through our weekly clinic visits. I failed to remember how clinic makes me feel. It's this feeling of heightened senses. All of my hair is on end, all the nerves of my body are at the surface. My mouth is constantly dry, I can't form a coherent sentence (unless it's to discuss Gregory with the staff) and my eyes are constantly darting back and forth, bug eyed. There are patients and families at every juncture of this Odyssey, surrounding you. I never know what stage they are at. Should I look that Mom in the eye? Will I see fear, triumph, hopelessness? What will I mirror back to her? It's also an adjustment for us. In Seattle, Gregory was a rarity at clinic. Here it's all kids. The hardest part is that Bone Marrow Transplant is not what they do. While Gregory is plenty stable enough to be cared for here, I sometimes feel insecure. I have to be meticulous in my record keeping and my verbal history to the nurses and Dr R. I feel like I am constantly triaging Gregory and his state of being. He's lying here, sleeping next to me and I've had to turn off his feeds. He is moaning occasionally and curling his body. I check his pump and calculate how much nutrition he has received today. Is it enough to just turn it off for a while? What about his fluid intake? Maybe just some water for a while? It's a constant balance between what he needs and what he can tolerate. I'm hoping that the B & B kick in soon and he starts to feel better.
You may be asking this: How long is it going to take for his GVH to get better? Good question. Here's the kicker. We don't know. Nobody knows. Realistically, probably two years. Quite easily longer. We won't know until it happens. Gregory's level of GVH tells me one thing, he's got some kick ass donor marrow. Proof positive, too. We received the results back from the DNA testing of the PTPN11 Gene Mutation. As far as the test can tell us, the mutation is gone. Gene PTPN11 on the long arm of chromosone 12 is normal. Which means that his risk of relapse has been reduced. There is no way of knowing 100% that it is gone. Yet, to the highest degree of specificity that can be tested, it's gone. Reveresed. On this Thankful Thursday, I thank Gregory's couragous donor. I hope you have as much spunk as your marrow does. It rocks.
I also wanted to give a shout out to everyone who is following us, cheering for us, sharing in our fear, wallowing in the sorrow. I read and remember everything. Every word is etched in The Odyssey of our family. One day I will get a chance to catch up with all of you. Some of you I will never get a chance to meet. Yet we have made an impression on each other. We are changed because of it.
Time for a PSA: Now, through the end of the year the National Bone Marrow Donor Registry, through bethematch.org is offering FREE donor registration. As long as they have funds available. SEE? My birthday wish is continuing to come TRUE!!! If it has ever crossed your mind to join the Marrow Donor registry click here, read up and DO IT!!! You fill out the form online, they send you paperwork and some giant q-tips. You swab the inside of your mouth, package it up and send it in. Simple. YOU CAN SAVE A LIFE!
August 1st. Day 51, post transplant.
- Location:water retreat
- Music:The Beatles ~ Blackbird
It's been way too long between postings. When it's been this long, it feel like such a CHORE to write. I'm going to slam this out and hope that it makes sense. Then back to our regularly schedule program. Hopefully.
Gregory finished his course of Vanco last week. Glad it's done. His blood cultures have remained negative, too. We finally finished the taper for his topical gut steroids. It's very obvious, too. The last several days have been pretty rough for him. He still needs some kind of targeted therapy for his gut. He is back to pretty severe stomach cramping, lots of gas, funky stools and not eating. He's back on full time nG tube feeds. He is taking very little by mouth. Some days nothing. His stomach cramps are so bad that he wakes up several times a night curled up in pain, moaning and exlaiming "Ow. Ow! OOOOWWWWW!" He is also back to being nauseated, which means round the clock Zofran. When we went to see the doc on Monday, he wanted to screen his stool for anything that he could, to rule out anything else that might be going on. Since he has no immune system, even his own flora could be causing troubles. He's also been on three antibiotics for a while. As it turns out he does have an elevated amount of yeast in his body. No surprise. Except that he has been on a daily antifungal for a couple months. We increased his antifungal dose and hope he will see some relief. Doc has also contacted SCCA to confirm that our next step would be to re-implement his Beclomethasone & Budesonide (B&B). He gave me the go ahead to just start it, assuming that this will be the course of action. Tuesday morning he puked up his nG tube. His stomach is so sensitive. Usually when this happens, we have to travel into clinic to have a new one placed. Here though, our home health nurses can come out to us and place it. Gregory handled the placement so well. I think it's partly because he is becoming accustomed to it and we were on our own turf.
I need to back track to Monday. Gregory's gut symptoms have been increasing daily. By the time we went in on Monday, the kid really needed some relief. Doc asked for a stool sample and normally we can accomplish this before we leave clinic. He's been so off that we were not able to get it done, while still there. So we hit the road. For these tests a fresh sample was needed. I knew we would be making a trip back in, later that day. As soon as we hit the house, Gregory did his duty. I collected it and we headed back in. Monday we spent three hours on the road. Ugh. Yet, I needed to get the ball rolling.
On top of all this, we received a phone call last week from the clinic telling us they had an H1N1 vax for Gregory. My response was "No you don't." It was my understanding that Gregory could not receive ANY vaccinations until he was one year post transplant. This is what I have learned: Gregory does not have the cells required to do anything with a vaccination. When you receive a vaccination your white cells recognize it as something that needs to be fought and creates antibodies to fight it, the next time it sees it. With the severity of H1N1 Dr R wanted Gregory to have the vaccination. Just in case. He may or may not be able to make antibodies against it. IF he can, then he would have SOME protection against it, if he is exposed to H1N1. The vaccine won't harm him. It COULD help him. So. On our way back from clinic on Monday, we stopped by our home care company and Gregory received his H1N1 vaccine. After it was done and he was cuddling in my lap, he said to me, through tears, "They didn't use sleepy medicine!" *sigh*
The last several days have been spent managing his belly. Timing his medications, feeds, fluids so that he receives what he needs, keeps it down and can tolerate it. Decreasing the rate of his nG feeds. A slower rate is easier to tolerate. He was at two ounces (60mls) an hour. We are down to between 1 & 1 1/2 ounces (30-40mls) an hour. Since he hasn't been eating or drinking his feeds are on 20 hours/day with four hours of just water. He has to take breaks often, too. Sometimes it's just too much for his belly.
Before his stomach really started getting to him, Daddy spent the night last Friday and AnnMarie spent the night on Saturday. Having AnnMarie around was simply divine. She has been working really hard on her knitting. I spent some time with her, tweaking her technique. Her project started out with 15 stitches. 18 inches of rows later, she had 31 stitches. Oops. Allowing her to run with the and just get used to using the needles and carrying the yarn was a good idea. She was ready for technique. I'm excited to see what she has, in a couple of weeks. This past Monday was Daddy's birthday. Gregory and I baked a box cake for Daddy on Friday and had our own little observance.
I think this covers most of the Who, What, Where, When, Why & How's for the last several days. I'll be back later to purge some more. I've got things I need to do! 'til later, gotta jet.
- Location:water retreat
- Music:The Smiths ~ Cemetry Gates
I wasn't not a young new mother. I was 27 when Curtis arrived. I can't even call how they came into this world as births. I usually refer to their arrivals as being "surgically removed". I've had three caesareans. Curtis was a miniscule five days past my due date. I went the "regular" route for pre-natal care and delivery. I was not aware that I had another option. Inductions were normal and routine, in my mind. To be expected. Why wait if you didn't have to. I was so anxious to meet this little being. I love being pregnant. Love, love, love it. I am one of the lucky ones and never had morning sickness. The day Curits arrived, the doc asked me if I wanted to have a baby today. My response was a resounding YES! Induction with Petocin, they broke my water. Several hours later, it was discovered that Curtis was breach. Emergency Ceasarean. It happened so fast. Once he was outside he developed a pneumothorax. The lining of his lung separated too quickly with his first breaths and created a hole in his lung. He was rushed off to the NICU. As they were stitching me up, they told me he would be there overnight. Thankfully, it healed quickly and he was in my arms about 45 minutes later.
The group that my OB/GYN works for has a policy of once you've had a caesarean, always caesarean. I still did not know I had a choice. AnnMarie and Gregory arrived via planned caesarean. The time between delivery and in my arms was longest with Gregory. I spent quite a bit of time in the OR after Gregory was born. Larry took him to the nursery for his bath and all that stuff. I didn't find out why until after Gregory and I were settled into our room together. Gregory's placenta had adhered to my uterine wall. My doc had to scrape it out. One might say that I was lucky to have had Gregory via caesarean. Had he arrived vaginally, the placenta could have torn from the wall and I would have bled. A lot. Then again, if my uterine wall hadn't been cut into twice already, maybe the placenta would not have adhered?
Daddy & Gregory
There is nothing I can do to change it. What's done is done. I've found some peace in my experiences. Sometimes though, it hurts. Deeply. I even feel robbed. Something was taken from me that I cannot replace. Even if I wanted another child, I can't now. The whole placenta thing messed with that. I would not have another child, now. Larry and I knew that when we had Gregory. I had my tubes tied with Gregory. The decision was already made and I am quite satisfied with the number of children we have. I still yearn to do it again. To do it "right". Every once in a while it crosses my mind that I have never given birth. What does that mean to me? Still trying to figure that one out. I do feel less of a mother. This is not the point in my writting where everyone clamours to tell me how much of a mother I am. I know this is not true. Doesn't mean I don't feel it, sometimes.
The things that bring me comfort is hearing my friends share their birth stories. I try to remember to ask my girlfriends for their birth stories on the day of their children's births. I do NOT watch birth shows on TV. Cannot do it. The Business of Being Born had me in tears of sorrow and tears of elation. Watching those brave, educated, empowered women deliver their babies. Babies born at home, babies born in birthing centers. Babies born the way nature intended for them to arrive. Yes, intervention is sometimes necessary. Not nearly to the degree that it is given, though. I am also encouraged that generations to come will KNOW they have a choice. Will have the information and tools available to choose how they want to labor and deliver.
Yes. Childhood Cancer is so scary that I was able to face my birthing fears. Not 100%. A little bit. It's a great movie, if you haven't seen it, watch it. Also, if you feel like it, tell me your birth story. 'til later, gotta jet.
I couldn't find an official video. The is Jane Siberry ~ Calling All Angels. It is hauntingly beautiful.
- Location:Water Retreat
- Music:Abra Moore ~ Somebody That Cares
I've been thinking a lot about "tomorrow". It's one of my least favorite traits. "What can I do tomorrow that will make it better than today?" It doesn't stop with tomorrow, either. Next week, next year, ten years from now. Which detracts from living today, from time to time. Thankfully I have a man in my life who constantly reminds me about not just today, but right now, and I'm not talking about Gregory. (Yes, darling, that would be you.)
I've always been about advocacy and awareness. My life has been influenced in so many ways, simply due to knowledge from people who have walked the path, learned the lessons and strive for change. Living with an awareness that what you do, every day, every moment makes a difference, no matter how small. Before Gregory was diagnosed I had been frantically searching for the beat of MY drum. I have several passions, but the tools to actually do something with them have escaped me. The environment, education, community, self awareness, politics. These things hold deep meaning for me, but what am I going to do about it? I can't convince everyone to quit using plastic utensils. I can't fund an entire school district so we have education choices. I knew from the time that Gregory was diagnosed, I wanted to do something that made a difference for Childhood Cancer. Nothing felt right. Forming a non-profit is out of the question. There are already so many out there, I would rather support one that is already in existence. I've been considering what am I going to do with my days.
Yes, I could be Suzy Homemaker. I'm not very good at it, though. I would find distractions that would fill up my hours and not get me very far. You might think I am a little nutty for thinking about stuff like this, right now. Here's the deal. Every last one of us has lived with the possiblity of Childhood Cancer. Yes. You and you and you. Yeah, you too. Statistically, six kids a day in the United States. On February 23, 2099, statistically speaking, Gregory was one of six kids diagnosed with cancer. One country, fifty states. Millions of kids. One of six. What are his chances of relapse? I have no idea. I'm sure someone had the stats on relapse, but I don't. I only know that it is less than one in six per day. I'm about to speak out of both sides of my mouth, OK? Yes. His chance of relapse is high. It's scary and freaks me out. Yet, they are also pretty slim. Which one carries more weight? There is not a single person on this green Earth that could answer that question. So the Pollyanna that is in me, looks to the future with eyes facing forward. Without a doubt, if something tragic happens, we drop everything and deal with it. I can't let the chance of something tragic happening stop me from living. How we choose to live will look completely different than it did eight months ago. With the exception that we will be living every day.
I do not have a degree. I always thought that I would be a mom & a wife and that would be it. Not realizing that there was a ME in the equation. I've always had great jobs and they have been perfect for what I needed at the time. I have an amazing opportunity, right now. I can make a choice. In fact, it feels so right, that I already have. I am going to be an RN. Crazy, huh? Of all the things I have hashed out in my brain and imagined myself doing, this just fits. It was almost a V8 moment. I know it's a lot of work. So are many other things that I won't be doing anymore. Over the years, I've yearned for an education. Not because I felt I needed one, only because I would love to be a professional at something I care deeply about. Teaching has always surfaced, in the past. It's just not for me. This totally is. Of course my dream would to eventually work Pediatric Hematolgy/Oncology. I'm not setting that as the end-all-be-all, though. There's no telling what will transpire between now and then. Hospice also calls me, too.
This would be the perfect way for me to pay it forward. To make a difference. Yes, it would still be a J-O-B, bringing with it all that being employed brings. Trust me, I haven't traded out my lenses for Rose Colored Glass. Reality is never far. There is just something about this that brings to mind a giant, glowing light bulb over my head. I'll be starting from scratch. I spent three quarters at community college fresh out of high school and failed miserably. It just was not the place for me at the time. I can do this, I am excited to do this. It'll be tough and have it's moments, but it's not like I don't know how to live with stress.
If anyone has any words of wisdom, they would be appreciated. I'm hoping that I can start by next fall. No guarantees, but I have to start somewhere.
How can you not look in these eyes and resist the desire to make a difference. Not me. 'til later, gotta jet.
- Location:Water Retreat
Monday was Gregory's weekly blood draw for CBC, Blood Cultures, CMV testing, Igg Levels, Tacro levels.......... One of the docs from the BMT team at SCCA in Seattle was here this week. I guess the come over periodically to check on their kiddos. Instead of having an exam with his blood draw, we were scheduled to see Dr R & Dr Sanders on Thursday. So, after his blood draw we scooted and I requested a phone call regarding that days lab results. Monday's are one of the nutty, busy days at clinic. I tell you, the staff needs to be cloned for Mondays and Fridays. I still had some things to hammer out with IHP (the home nursing company that we are work dog with for Gregory's IV, nG, nutrition & central line needs). I received a phone call from IHP Monday afternoon and they had his lab results. I'm so used to hearing them that they can fire them at me and it's totally all good. The nurse starts firing them away: Hematocrit ~ 33, Platelets ~ 54, White count ~ 3.7, ANC ~ 3145. Wait. Stop. Platelets, 54????????? (His platelets have been stable, between 175-200 for the last several weeks) Ummm, yeah. 54. Really? So I do some really fast processing, the nurse looks up what his antibiotics might do to his counts. Nope. They don't affect platelets, just white count. OK. Breathe. We are seeing doc on Thursday. Not long.
*Why am I freaking out? A drop that severe that fast could mean graft failure. Meaning his new marrow is starting to fail.
Tuesday I get a phone call from a nurse coordinator at Dr R's office. I couldn't get there in time, a message was left. Counts were left and we are repeating his CBC on Thursday. She read the platelets, looked at his history and decided we needed to get another picture. Here's the thing with blood counts: When blood is drawn, they are only getting a picture of those few millileters of blood. I can't remember how many are in a tube for a cbc, but it's probably between 3 & 6. A tiny amount. While you expect different samples to have small differences, this is a huge drop. His medications have been stable, he doesn't appear to have anything else going on, he hasn't been injured. At this point, my head is absolutely spinning. The nightmares began, again. Vivid images of Gregory, pale, face covered in petechia, dark sunken eyes, thin as a rail. A few days before this happened I was thinking about my sleep. I do sleep. That's all I do, though. About five hours between 2:00 am & 8:00am. I let exhaustion take me down. The need to care for Gregory snaps me back up. I want to dream, again. I don't have nightmares very often, but I don't dream. I digress. One thought was that Monday's sample was just a fluke and it was not a fair representation of his counts. Which is completely valid and plausible. I can get my head around it. Tuesday and Wednesday passed without anything of note. His appetite has been off since Sunday and I've been supplementing him with nG feeds, but that's it.
I've sat with this beast for so long now, that most times, it's a dull roar. Humming along, like the sound of high voltage electricy wires. Constantly running as an under"current" (ha!) to my daily activities. I've become quite adept at feeling it constantly. It lives between my shoulder blades, in my jaw, between my eyes and strangely enough, behind my ears. Our appointment on Thursday wasn't until 11:00. We left shortly before 10:00 and as I hit the road, the panic set in. The kinds that makes your eyes dart back and forth. White knuckle gripping the steering wheel, speaking in clipped reponses with little to no affect. Larry and I had made arrangements to swap laundry and some other necessities. (YARN & my Uggs, It's getting cold and my Keens aren't cutting it anymore.) He took one look at me and knew where I was at. He didn't say anything at the time, but he didn't need to.
Gregory and I got to clinic, had his blood drawn and we waited. The results came back fairly quickly and Dr R started reading them off to me: Hematocrit ~ 35, Platelets ~ 175........ 175!! I just stared at him. "175!" Dr R: "Yeah!" With a hint of "did you really expect anything less." If you know Dr R, you'll ge it. While he is not an overly optimistic doc, he has his moments of "No Duh! There was no other expectation." So we had the conversation that Monday's results were probably just a fluke. Even if his platelets WERE that low, I don't think there is any way possible that they could recover that quickly. I can't tell you what a huge sigh of relief I had. I immediately called Larry and we had our moment.
This is such an ugly ride. Most days, lately, I've been able to handle it with a certain sense of normality. Even finding joy and delight in our days. Then again, with Gregory, joy and delight are never far behind. I've even found myself with moments of "normal", brief ones, then I get snapped back to reality, but they happen none the less. Thinking about what I am going to do "after". Realizing that there will be an "after", someday. While it will never be "before", it will be an "after". There is still potential for great things on our horizon.
I think we have about a week left of IV antibiotics. I'm looking forward to it being over. Being tied to an IV, slows him down. I think the medication does, too. We are continuing his topical GI steroids, yet I think he is not ready to be tappered. Don't know what they do if he still needs them, though. Maybe there is another therapy, maybe we wait it out as long as the symptoms are manageable. *shrug* We will see. We added heprin back to his IV care. He is now hep locked daily with 100u heprin. They have had troubles getting a good draw, lately and even though his central line is positional, it's a little more troublesome than simply changing his posture, position. His blood cultures from Monday are continuing to show negative. Good news.
I've been indoctrinating him to the Indiana Jones Saga. He has the Lego Indy game for Wii and loves it. He is hooked on Indy. We finally recieved our own copy of Polar Express, today. (Thank you, Nana!!) We've been watching borrowed copies since we left home in May. We watched it today, too. Along with the new Ice Age. Yes, we watch alot of movies, but they are usually just on, in the background. There is activity around movie time. Unless he needs a snuggle and he nudges over to me and fits himself into whatever available nook and cranny is available. He is the sweetest cuddler. We have some bread that is expired, Gregory will be doning protective gloves this weekend and we will be feeding the various water fowl we have that congregate out our door. Provided the weather is decent. Maybe a tricycle ride, too. His sweater will be finished, this weekend, too. I also need to crank out a couple new winter caps for the two of us.
Speaking of which, I have a hood that is calling my name. I need to pick up my sticks 'n string and get busy. 'til later, gotta jet.
- Location:Water Retreat
- Music:Elton John ~ Someone Saved My Life Tonight
Curtis showed up around 3:00, Saturday and spent the night with Gregory and I. All-in-all it went fairly smooth. We watched Elf, the new Transformers movie, ate ice cream, played Wii, played with Widgets, lego, colorwonder, Nintendo DS, cuddled and chatted. I had the opportunity to prepare food for more than two people. I really miss my kitchen. Not because of the content, simply because it's home. While we were cuddling, Curtis and I discussed what he was feeling while we were gone. I'd like to bring up something that he said. It's a very dificult topic and has many emotions. The purpose behind bringing it to light is mostly to document it. We were talking about Gregory and his cancer and how Curtis felt about it. He tells me this: "I think God wanted you and Daddy to stay together, so he gave Gregory Cancer." Yep. Let that sink in a little. I have no idea where this came from and it's totally OK. I understand and respect where this came from. I have been working on a post addressing this, anyhow. I don't have the correct words, but really? Are there correct words to address this with? There are blunt ones. They are the only ones I have been able to find and trust me, I've been searching my heart and soul for many months, looking for the softest way to say this: God did not give Gregory cancer so Larry and I would stay together. Period. God does not do bad things, so that good things can happen. There is not a lesson to be learned from Gregory having cancer. There is nothing big enough to make up for him having to go through this. Please understand, there is no anger in these words. Only truth and a hope of understanding. I would rather be a divorced, single mom, than to have to experience this. I told Curtis that if God wanted Daddy and I to stay together, he would have found another way. He then questioned who invented cancer. "If God didn't invent cancer, I bet the devil did." I told him that God loves all of us and would never give ANYONE cancer. I told him that cancer is just this really freaky thing that happens. There is no explanation for it and it just happens. Which is really, really, really hard for Curtis to understand. He's my black and white kid. He wants a concise answer for everything. I don't have one for this and neither does anyone else. It just happens and it sucks.
I would say that there is a common thread through most of my entries. It's a request. One that I constanly battle with, too. Trust me, I really like the taste of my size 8 shoes. Anyone who has known me for a while can attest to this fact. I try to remind myself to pause, before I comment. Stop and ponder what is about to exit my mouth. We all get on this loop of saying what is expected, just so we can contribute what we have to say. Why do you think I write? I've got alot to say and I'm going to say it, right? Ah, no. Not every time. I've never bit my tounge as much as I have in the last eight months. Stepped back and waited for a situation to play out, before adding my two cents. You know what's happened? I'm not nearly as angry as I used to be. Granted, my social situations are very few and far between, but I'm practicing on reminding myself to do just this. Stop. Listen. Consider. Sometimes, as we all know, what is being said isn't what is being said, too. This humanity thing is hard work.
There were several moments, while Curtis was here, that Gregory would walk up to him, wrap his little arms around Curtis' legs and murmur, "Curtis, I love you.". Then there were the typical sibling moments. We knew that Gregory's possession of a Wii would cause conflict. We did have two melt-downs where Curtis wound up in tears and exclaiming that Gregory was hogging the Wii and being selfish. Gregory lost a few times, too. While Curtis had been better, for a while now, he is going to have to re-learn what it's like to have us home.
Gregory had Vanco levels again, today. The last batch came back low, they upped his dosage and needed to check them today. The trough came back lower than the previous trough, but the peak came back where it needs to be. We are not changing the dose, but will have levels again, later this week. One of the nurses from IHP told me that there were three organisms in Gregory's blood cultures. Which would indicate an infection, not simply a contaminated sample. I will be requesting a copy of the results, tomorrow, so I can know what was found.
When the nursing staff was out to draw his peak, one of his lumens on his central line would not draw. Ugh! Which meant there was a clot in the line. Thankfully they were able to draw from the other lumen, but had to come back to address the clot. When this happened, in the hospital, they used TPA. IHP uses something called Activase, which has significantly fewer risks. The way it works: A small amount of the drug is injected into the line. Just enough to fill the length of the tubing. The medication sits in the line, this one for two hours, and breaks up the clot that is clogging it. After two hours time, they draw back the drug, out of the line, and flush with saline. If all goes well, it works. Which it did. Whew.
Between Curtis' visit and the nursing staff, Gregory has had a very tiring and stressful weekend. Tonight he complained of a headache and was asleep by 8:30. Totally and completely NOT his normal. I was so busy, with Curtis being here, that I did not spend the time with Gregory, like I have been. As I've been writing this, he is curled up next to me sleeping, but rather fitful. He curls up next to me and burrows into me. At one point, he even let out a full on laugh. He did not eat very much today, either. I have a supply of his formula feeds for days such as today and he received a can tonight.
Even if the house gets done soon, I don't expect us to be homehome for a while. Larry and I are really nervous about stressing Gregory out and with Hamthrax and all the other common cold and flu's floating around, it just is smart to stay where we are at. Yes, getting into town for clinic is more challenging, but I found out Friday that IHP can come to us to draw his labs if we cannot get to clinic. (read: too much snow.) It's not the snow that makes me nervous, it's the getting stuck and having to wait with Gregory in the car. I can handle waiting in a cold car, he cannot.
I need to go and cuddle with this incredibly sweet child of ours. He's needing a little extra love, tonight. 'til later, gotta jet.
ETA: This just in....... Notes From the Universe
Shall I remind you, dearest Mindi, that the reason you care so much, sometimes even worry so much, is because there still exists between you and life, a passionate love affair.
And because of this, everything's going to be just fine.
xxoo,
The Universe
- Location:Water Retreat
- Music:Control ~ Janet Jackson
Larry came out to our Water Retreat and spent Saturday evening through Sunday morning with us. It was quiet, cozy and comfortable. I need to write closer to the events, the details have already faded. Suffice it to say, we could use more of this. Except there is this little thing called “life” that gets in the way. I know I’ve said this a hundred times, but I am completely comfortable with staying out here as long as is needed. It goes without saying that Gregory’s health is a top priority. Well, THE priority. Rest assured, Curtis and AnnMarie are never far from my thoughts and always in my heart. Yes, it is painful to imagine what they might be going through. Yes, we do have time to make up for and time that hasn’t even passed. This is how it is for now, though. They are strong, confident and loving kids. They know which side their bread is buttered. They know we wouldn’t be doing this if we didn’t have to. *I hope.*
The thing is, trying to keep them all separated and germ free would be far more stressful, than us simply being apart. (Simply. If only it were.) The logistics of keeping their germs away from Gregory, while living under the same small roof, makes my head spin. When the Pediatric Hem/Onc unit/clinic prohibits siblings from visiting, it’s pretty clear that the siblings who live in the “real” world put the kids at a significant risk. Not only that, but they would be contagious before symptoms even showed. I know I’ve spent a great deal of words on this topic. There is no such thing as being too careful. Besides, Larry and I would not be able to live with ourselves if something happened that was preventable. So. We soldier on.
Gregory went in for labs/exam again this last Monday. They also re-checked is immunoglobulin level. Sure enough, it was below the threshold and we scheduled a transfusion for Wednesday. Also? His weekly blood cultures came back positive, again. New cultures were drawn on Wednesday and subsequently came back negative. One of the things I love about Dr R is he errors on the side of caution. While Gregory has not had any other symptoms and this could very well be another false positive, he felt it best to treat this as if it were a true positive. Which means IV antibiotics. This bacteria is sensitive to Vancomycin, so they set us up with IV Vanco at home. Whew!! No admit. Cannot believe it, actually. The home health company we work with is IHP, they received the orders and came out to get us started. It’s pretty cool how they have it worked out. This round is infused every 8 hours, for two hours. The pumps that are used can be programmed to an amazing degree of specificity. It is programmed to run 24 hours. Every eight hours it begins the dosage rate, runs at that rate for two hours, then drops to next to nothing until it’s time for the next dose. He can be unhooked in between and the pump remembers what it needs to do, when he is hooked back up again. Which means I can hook him up before his late night dose, leave it run and not worry about messing with it until after his early morning dose. LOVE IT! IHP is an awesome group. They more than willingly came out to us, here on the water and will be back tomorrow to draw his labs. With this drug, they need to make sure he is receiving a therapeutic dose. They draw blood at the “trough”, right before a dose, and at the “peak” right after a dose, to determine the level of drug in his blood stream. The last time he was on Vanco, he never was at a therapeutic level. We switched antibiotics before one could be achieved. I’m hoping that we won’t need to add those extra days to his therapy, but am realistic in the knowledge that this probably won’t happen. It’s a fourteen day course, once therapeutic levels are achieved.
Wednesday we started with an early morning dental appointment. Even though Oral Med at SCCA was following him, I wanted his dentist to have a peek and make sure everything was OK. I also wanted them to have a baseline post-transplant. I’m pretty sure that I’ve mentioned it before, but I LOVE our kids’ dental group. They made sure to get us in early, before any other kids showed up and kept in an isolated patient area. The staff and doctors are second to none. Instead of Children’s Choice for Dentistry they really should be called Parent’s Choice for Peace of Mind. Love you guys!!
We then went down for his immunoglobulin transfusion. While Gregory was being transfused, I went down and participated in the Children’s Miracle Network Radioathon put on by a local country radio station, KIX 96.1. The Child Life staff asked me to participate on Monday and I jumped at the opportunity. Anytime I can give back, advocate and raise awareness, I’m in. I didn’t do my homework, though. I wasn’t very prepared and they even video taped it. You can find the piece HERE. With the disclaimer that I am in dire need of a haircut and I can’t remember how to dress myself, anymore. Yes, honestly I really don’t care, but ‘ya know. (I'm down at the bottom, Mindi Finch.)
Mom is coming out for a visit tomorrow (Friday), I get to go to the grocery store. Yippee, huh? Provided everyone stays healthy, Curtis is coming out Saturday to spend the night with us. We were on the phone, the other day, and he asked me if we were going to be home for Thanksgiving. (Meanwhile Daddy’s in the background and hollers “I hope so!”) I tell him we should be home, as long as everyone is healthy. (I’m so sick of saying that. “As long as everyone is healthy.”) We have a subscription to Rachel Ray’s magazine and Curtis was flipping through it, drooling over all the Thanksgiving recipes. He loves to cook, loves food and loves Rachel Ray. I need to get in the kitchen with Curtis. *grant me the patience I need for this gargantuan task!* Here is comes again…. as long as everyone stays healthy, AnnMarie will stay with us next weekend. Sounds crazy doesn’t it. Trust me. It is. Once upon a time, these bone marrow transplant kids were literally kept in a bubble, until their immune systems came back. I’m talking total isolation and no physical touch. I met a kid at SCCA who had a transplant 23 years ago and his was like that. I consider our current situation a drastic improvement.
I need to get with AnnMarie and her knitting. She is so stinkin’ proud of her knitting. I have no idea how she is doing. She had a lesson with the Knit For Life folks at Seattle Children’s and seemed to catch on pretty well. I know she needs some fine tuning and I’m looking forward to spending some time with her on it. She tells me that she takes it everywhere with her. I hope that she has an honest interest in it and isn’t doing it, because mommy loves it. I want her to experience it like I do and not see it as a chore. Once again, time will tell and I’m sure I’ll have a careful chat with her about it.
Here’s my PSA: If you’ve been thinking about cards for the Holiday’s it would be awesome if you would consider THESE. They are sold through The Pediatric Cancer Research Foundation, at a fairly reasonable price. The artwork is by Pediatric Cancer patients and all funds go directly to Pediatric Cancer Research. There is a lot to choose from, too. Many thanks to Ms Cristy for already purchasing some!!
These guys deserve a posting all of their own, but this will have to do.
This is Susan, Maddy’s mom & Chuck, Victoria’s Dad. These are my BMT peeps. While there was a tremendous number of bone marrow transplant families these two (and another, yes, Stacey and James, Liam is in the inner circle, too. Except I don’t have any pictures of us.) Maddy is preparing for her second transplant. At her day 80 work up, the found evidence of residual disease and are going for it again. This time with an unrelated donor and the addition of radiation. (simplification, I know, but you get the gist.) Her transplant is scheduled for October 27th. Victoria finally got to leave the hospital!!!!!! Her and her dad have spent 211 days inpatient. Yes. Let me say it this way. Two hundred eleven. 211 days. In the hospital. They still have an incredibly long way to go, but this is a huge step. Thinking about all my BMT families!!!!!! (Lonnie, Axel, Crystal, Henry, Arianna, Ammahd, Kate, Raven, Jamison)
Alright. Put a fork in me I’m done, for tonight. There’s a ton more, rolling around up there, but I’m not up to it. I’ll get to it. Soon enough. ‘til later, gotta jet.
- Location:Water Retreat
- Music:Morning Has Broken ~ Cat Stevens
Larry will be coming back out on Saturday afternoon and is going to spend the night with us. I am soooooo looking forward to it. Mom will have Curtis and AnnMarie, so it's perfect timing. All I want to do, right now, is be next to him. To feel his presence and feel a sense of safety and security. To know that I'm not alone. He does that for me. There is no other person, before or since, that 'gets' me like he does. I'm so happy to see him again. Which sounds like such a weak word, but it's so true. In a way I feel like a twittering school girl. Freshly returned from a summer spent vactioning with family, returning to her flame. Then today, as he was leaving I felt like the secret mistress as I asked him, "When are you coming back?" This is certainly a strange world, we now live in.
The question you are afraid to ask, yet I know you want to, yet you really shouldn't 'cause it's none of anybody's business, but I'll tell you anyhow 'cause that's just me: What about the other kids?
Yes. I know. What ABOUT the other kids. I have had the delicious luxury of doing this with Gregory, one on one. AnnMarie and Curtis have made HUGE sacrifices for this. The truth is, in order for Gregory to get through this as best he can, his surroundings and circumstances need to be as perfect as we can make them. Stress is one of the largest factors. To be blunt, Curtis brings a TON of stress. Loads of it. Before we left for Seattle, my patience was non-existant. I have to admit that I spent way too much time yelling and screaming. I'm terrified of slipping back into that. There is no room, at our Water Retreat for all five of us, when the weather is like it is. If all three kids were here, all hell would break loose in no time flat. The kids seem to be well, no sickness for about 10ish days. The house isn't ready, though. Which doesn't bother me, not in the slightest. Sound selfish? Maybe. I call it survival. The choices we make (meaning the collective "we") are not up for judgement. Just because YOU wouldn't handle things the way someone has, doesn't mean it's not best for the person making those decisions. Which sounds rather simple, right? Except judgement is passed everyday, in everyway. I know we have a long row to hoe with Curtis and AnnMarie. The choices that we have made, mean we probably have an extended period of tough work ahead of us. Who knows. All I know is my family is the most important thing in my life. Every little thing I do, is because I want what's best for my family. So, yes, from the outside it looks like I might be avoiding Curtis and AnnMarie. In a way this is true. What needs to remembered is the amount of time that we are spending apart, now, is miniscule, compared TO THE REST OF GREGORY'S LIFE. If our separation helps to keep Gregory alive, I'll gladly take the lesser of two evils. Then comes the next question. Well, Larry's around the kids, won't he transmitt whatever the kids might have to Gregory? I really don't think so. Larry rarely gets sick. He's also walked this Earth alot longer than Curtis and AnnMarie. Hopefully he has a plethora of anti-bodies floating around in his blood stream, ready and willing to take immediate action.
I still find myself very uncomfortable, from time to time. I am a very touchy-feely person and having to not touch ANYONE freaks me out, sometimes. Not being able to shake the hand of a new medical provider. Giving a hug to a really great cancer-mom friend and hestitating as I'm going in for the squeeze, 'cause even though I know she's just as clean and cautious as I am, you never know. Knowing too, that she is probably thinking the same thing. Wiping down the cart at the grocery store. When I'm alone. Using my key chain hand sanitizer gel after paying for my groceries and before pushing my cart out to the car. Not using hand rails. Remembering to use a hip or shoulder to open doors. Covering my hand with my sleeve when I must use a handle. Not kissing pigs. (Gotcha! Are you paying attention?) Now I have to ask all of this of the people that will be in direct contact with him. Constantly reminding the OffSpring. I've often wondered if it would have been a bit easier, if Gregory's transplant could have happened in late fall. *shrug* Not like it was an option, my mind just wanders.
To paraphrase a good friends words from earlier today, I should "Buck up and deal with it." Trust me. Through all this written word there is interwoven the love and gratitude that we have made it this far. That we have a child as "healthy" as he is. That we wake up every morning and he is laying here, breathing, next to me. I may not speak it enough, but this train of thought is on a constant loop, softly running in the background. We HAVE come a long way, baby.
The weather seems to be warming up a bit, I still have pictures to upload and words that go with them. Hopefully in the next few days. The next time you see your partner and/or kids, give 'em a squeeze and a peck. Tell them you love 'em. Tell 'em I told you to. Life is precious. 'til later, gotta jet.
- Location:Water Retreat
- Music:Daniel ~ Elton John
We arrived at clinic around 11:00. Checked in, vitals, blood draw, including repeating the blood cultures. It was a busy day at clinic. We sat there for about an hour, not knowing what was going on. We didn't know if we were going to be admitted. Once we saw the nurse and the doc (Dr R is out the balance of the week, we got to see Dr Judy!) I found out that the positive was from only ONE lumen. Gregory also did not have ANY of the symptoms. Granted, he is on high-dose steroids and a fever would be masked, but his demeanor has been unchanged. The bacteria was of the Gram Positive variety. Which is not as nasty as a Gram Negative. Still terribly nasty, though. Adding all of these factors together, it painted a picture that it was probably an outside contaminant. Some of you may be going WHAT? Yes, cross-contamination happens. These tests are performed by humans. The specimens are handled by several people. It's a fact of life. Due to our frequency of hospital visits, I'm not surprised this could have happened. To be honest, I think the positive CMV, right after transplant, was a cross contamination, too. There were a few of us who popped positive for CMV, at about the same time. Anyhow. We had two options. Be admitted and begin treatment. Which has it's own set of risks. Dr Judy also mentioned that there was a high number of kids with "sick", so if we could avoid being in the hospital, it would be better. The other option was to go home and see if today's cultures popped positive. If they did/do, we immediately get ourselves back to the hospital. We both were really on the fence on this. Both options have risk. I couldn't tell if she was wanting me to make the call or not, I told her that on this one, I couldn't make the call. I wasn't prepared for a situation such as this. I hadn't had time to think it through. Dr Judy made the call and we went home. We hit the road by 1:00. If today's cultures were going to be positive, we should have known around 6:00ish. I've spent the balance of the day in a spooked out stupor. Jumping everytime my phone makes a noise. We've made it this far, without a phone call from the office. There is still a remote possiblity that something could pop. I think we are in the clear, though. *fingers crossed*
This little episode has started me thinking about how long Gregory should keep his central line. Plain and simple, it's a risk for him to have it. He really doesn't "need" it. By the middle of November we should be down to clinic visits, every two weeks. I absolutely hate the fact that they will need to "poke" Gregory. Hate it. He would also need a traditional IV for his IViG. Hopefully he won't be needing it more than every 4-6 weeks, through his prednisone therapy. If he winds up with a hospital admit, after it is removed, I am hoping that they would place a PIC line. I've just started thinking about this. As strange as it may seem, I like to know ALL the "What if's". If I am unprepared for something, it's easily readable on my face. I KNOW that Gregory picks up on that. I try to keep my reactions as bland as possible. Which is where the education piece comes in. Not to mention I'm an information freak, too.
Mom did get to come out, today, and spend some time with Gregory. I had a chance to run to the store. It's the first time I've had someone I felt comfortable staying with him, since August 10. It's so nice to be back in the land of reasonbly priced items. Groceries were SOOOO expensive. It's also nice to be back in the land of abundant drive-thru's. While I really do not like drive-thru's, they are awfully convenient when I have a child who cannot go inside. Gregory has developed an obsessive desire for Arby's (Barby's) curly fries. When we left today, the only thing I wanted to do was get back to the house. When I went for groceries, I found an Barby's right across the street. Yay!! After shopping I pulled into the Barby's and low-and-behold, there was a Drive-Thru Beer Barn, right next door. Weird. You literally drive in the middle of this building, painted red and shaped like a barn, order what you want, pay and drive out. On either side of th interior are glass refridgerator "beer cases" down both walls. Can't say I've ever seen THAT before.
Larry is coming up tomorrow. Err... today. Cannot wait to see him.
As we were pulling into town, this morning, Gregory REALLY realized that we were home. He recognized road, buildings, landmarks. He exclaimed, "Mommy! We are in SPOKANE!" Like he didn't believe it before. We pulled up to an intersection that we use alot and he pointed down the road and said, "Mommy! Home's THAT way." I'm hoping that he will be ready to go home, when the time comes. I can understand that the idea of "home" was quite abstract for him. We were gone for a LONG time. Especially to a three/four year old. Today, when referring to where we were staying, he called it The Ronald McDonald House. Several times. I kept asking: Where? He kept repeating "The Ronald McDonald House". He finally realized what he was saying. His little brain has been constantly adapting to his environs and he's had many different places to rest his head. Then you add the effects of the chemo and the othere drugs he's been/is on, it's not wonder he suffers a bit of confusion. The most important part, it to keep constant what we can. I am so grateful that I am able to be with him 24/7. He has no question about THAT. Things will be different when we are finally living together, as a family. I am hoping that we will be able to ease him into the chaos that comes with a family of five.
Today was such a hard day. By the end of it, I found myself snapping at Gregory. For things that should have been handled with a small reprimand or a simple re-direct. I just reached that point where I wanted to say "Really?". While I do not want to be admitted again, I know it's a reality and it will happen. I just wasn't prepared to deal with the possiblity so soon after our re-location. I was sure that I had done everything I possibly could have to ensure a safe and healthy move for him. Despite the fact that I KNOW a bacterial blood infection is somethimes just a fluke. They just happen. What can you expect when you don't have an inmmune system? It was another reminder that my reins were too loose. I was starting to get a little too comfortable. I'm still ferociously protective. My family is going to tire of my constant reminders. I have to do it, though. Not because I don't trust them, I need to know that they are being as vigilant. I will admit, I am so tired of being constanly "on". Constantly. Even if I had someone to give me a break, this sense of being would not go away. I am Gregory's primary caregiver. I am the only one who has been with him, through all of this. I am his traveling medical record, historian, honorary registered nurse, teacher, pharmacist, nurturer, play mate, punching bag........ you name it, that's me. For now. Just let the record reflect: I hate Childhood Cancer. Cancer Sucks.
I'm hoping the balance of the week is quiet and restful for us. We have clinic again on Monday. 'til later, gotta jet.
- Location:Haven on The Water
- Music:Raincheck ~ Van Morrison
Cleaning/packing the apartment took longer than I had anticipated. As I was doing this, I was trying to remember the last time I packed, cleaned and vacated somewhere I had lived. I can't remember. The last couple of times, Larry handled it all, himself. I have a far greater respect for that task. We finally hit the freeway around 2:00. As we merged onto I-5 it finally hit Gregory that we really were leaving. He gleefully bid Seattle farewell. "Yeeeeee! Bye Seattle! Yeeeee!" With the requisite hand clapping & waving, too. The SCCA is on Eastake Avenue, which runs paralell to I-5. As we were cruising along and chatting about our road trip, watching this beautiful city pass by, Gregory started excitedly screaming about something. It took me a second to catch it. "Clinic! Clinic! Mommy! That was clinic!!! By clinic!!" It absolutely amazed that he recognzed clinic from a completely different perspective, surrounded by TONS of stimuly and recognized it. Then again, not really. I have yet ot meet a child as observant as him, that is not on the Autism Spectrum. (I can say that, 'cause I have one that is.) I can tell that Gregory and I have been spending a TON of time together. We willingly let me listen to my own tunes during the entire six hour trip. I think my music is quickly becoming OUR music. Which tickles me to pieces. With all the craziness that Sunday brought, I knew that Gregory's eating and drinking habits would be totally off. I opted to hook him up to his formula feeds, through his nG, for the trip. Best decision I could have made. His belly was kept full and he was well hydrated. He was able to relax and enjoy the trip. He fell asleep about two hours in and slept for two hours, then we spent the last two happily chatting. We stopped in Moses Lake for gas, diaper change & meds. We headed down the hill and caught sight of the city at around 6:30. As we entered the city, I told Gregory where we were. It was already dark, so he didn't recognize it. He greeted Spokane in the same manner that he hailed his farewell to Seattle. Squeals and all. We still had about an hour ahead of us. Our place on the water (let me clarify. My Maternal Grandmother is the owner and it is a house on the water, for the family.) is actually on the Spokane River, which is conected to Lake Coeur 'd Alene, in Idaho. It's actually in Post Falls, ID. The location couldn't be better. It's a 25 minute drive from our home to the water.
My first thought, upon exiting the car, "Holy crap!! It's flippin' COLD!" Seattle has been moderate, sunshine and downright beautiful. Last night it was freezing. Larry and I planned ahead. Saturday he brought out our winter coats, my Dyson (so thankful to be reunited.) and turned on the heat. Then came the task of unloading, doing some quick de-germing, vaccuuming, readying his sleeping area, meds, organizing, etc. Adrenilin is a wonderful thing. I finally crashed around 12:00, readying myself for the 6:00 wake-up. Ugh! Instead of 6:00 I woke up bright-eyed and bushy-tailed at 5:30. Quickly followed by Gregory. He's been a little excited, too. We did what we needed to do and hit the road at 7:15. It was smooth sailing, into town. I was a little nervous about the timing. I've never traveled into town, on a weekday, during that time. Even with a very small bit of congestion, we hit the elevators at 7:50. 20 minutes to spare. Gregory actually fell asleep on the way in, too.
We have early appointments, due to the Tacrolimus level that needs to be taken. They determine how much drug is in his system at the lowest point of his dosage. His dose is due at 8:00. The most recent dose would have been at midnight. Well...... I forgot to give him his Tacro at midnight, last night. I feel pretty stupid about it, too. Thankfully he's been really stable (his levels) and we've decided to wait until next weeks vist, to check it. Gregory's anticipation and relief at arriving at "Dr Reynold's Hosible" was palpable. He walked into that place like he owned it. He joyfully greeted everyone, ran to the play objects and acted like he was home. Not knowing how this was going to work out, we headed to the playroom to wait. Monday's are a crazy day at clinic. Gregory's weight, height and vitals were taken. His blood was drawn. After we had been there for a bit, we were moved to a room. Thank you, thank you. Even though all these families also practice germ avoidance and anhiliation, it's not at the level we are at. We will always be placed in a isolation room. As a side note: The Hem/Onc Unit and Clinc has implemented a "No Siblings" policy. It is an effort to keep the risk down for these kiddos. I'm grateful for it, but is places even additional pressure on families. A friend, Ms Jess (Ellie's Mommy) went through twelve (12) people before she was able to find someone to watch Ellie's sister, this morning. Ugh!! I feel for you, girl. I thank you for your troubles and thank your ever-expanding community for helping all of us out.
Gregory is no longer a floor kid. Before we left for Seattle, he would only sit in my lap, on the floor, for his vitals and blood draws. He proudly walked into the room, took his seat and went through the routine with Kari. As bittersweet as it is to say this, I am so proud of him. He has transitioned back so well. I'm begining to think that us being out here, on the water, just the two of us, is a good idea. It is slowly acclimating him to HomeHome. I also know that I have learned NOT to push him. I am far from babying him, I am just keeping an eagle eye out for him and accomodating his needs. We were joyfully greeted by everyone. It felt a little strange, too. Several of them have been following The Greginator. We really didn't spend that much time with them, before transplant. They know me, through this journal, far more than I know them. I had a moment or two of feeling a little exposed. Nothing disturbing or upsetting, just a fleeting feeling. I was, once again, sitting in clinic, grinning from ear-to-ear. Happy to be back. Happy to have "made it", this far.
I always learn something from Dr Reynolds. Every time. Gregory's neutrophils were pretty high. 7110. They were 88% of his white count. Which is high. (Don't forget, they don't work right, yet.) Dr Reynolds let me know that adrenylin can artificially inflate those number. Add to that, Gregory's blood pressure was elevated, too. 117/73. Which is high for him. 125/75 is the threshhold. I'm hoping that his elevated blood pressure is simply related to coming back and his excitement to be back. Weight was 14.2K (31 lbs). His hematocrit is stil at 36 and his platelets are an astounding 208. (At this point I want to exclaim "Way to go Idaho!". The pig in Toy Story says this to Mr Potato head.)
There was a bit of confusion, in terms of what needed to be drawn, this morning. Gregory has weekly survalliance blood cultures, while he is on high dose steroids. This was left off the orders, unfortunately he had to accessed twice, today. The only reason this is an issue, is that every time they access his line, it puts him at risk of infection. Not because their practices are unclean, it's just a fact of life. Then I am reminded of his Busulfan days. This was his first chemo for his transplant conditioning. To determine if he was at theraputic levels, they accessed him 16 times/day for three days. So. Twice for today? Big deal, but not really. They also wanted to get a UA (oops, Urine Analysis). Usually Gregory begrudginly offers his prescious pee. Today? I held up the cup, asked him if we could have some and whether or not he had any to offer. His ever-so-complacent and energetic response: "Sure!" *swoon* This kid kills me.
I did really well, at clinic. Until Dr Reynolds walked into the room. Then my eyes started to leak. I was explaining to a friend, earlier, as we left the SCCA on Thursday, we were kind of in limbo. Of course, if we needed ANYTHING betwen then and getting home, they would be there. Except we weren't home and we hadn't seen Dr Reynolds, yet. Him walking into the door was a non-verbal handing over of the reins. It was a "OK. Here we are. You are in charge. We are in good hands." It was relief.
It looks like Gregory is going to be on his anti-fungal through his prednisone therapy. Which I am totally good with. His non-functioning immune system and the daily penecillin are just too much for him. I noticed some new spots on Gregory, over the weekend. He has a black spot on each of his big toes, where the nail begins to emerge. They are small, about the size of the head of a stick pin. Then again, Gregory's toe nails are not very big. My first reaction was secondary cancer. Melanoma, to be exact. I've worked in dermatology too long and seen my fair share of Malignant Melanoma. Dr Reynolds looked at them today, and assured me that they were pigment changes from his conditioning. Which totally makes sense. Not long after he was through with conditioning, he had several dark pigmented spots on his torso. Why would it take this long for these? My theory: They have ben there all along, it's just taken this long for the nail to grow out long enough for us to see it. I'm not convinced that It's simply pigment, but I'm thankful that there are other explanations. Why am I not convinced? Couldn't tell you. I'm just going to keep a watchful eye on it. Make sure it grows with him and eventually I find myself trimming off due to growth. They also drew his Immunoglobulin level, too. I expect a five hour infusion of IViG in our near future. This will be drawn monthly, through his prednisone therapy.
All in all, we have had an incredibly smooth transition. He's happy, he's here. Mom is coming out tomorrow. She's been in crowded areas lately and this will be here first visit with Gregory since August 12. Two months is a long time. I'm going to take advantage of her presence and hit the grocery store. (I'm ashamed to admit how much I had to throw away. I wasn't about to risk fridge/freezer food, after being in a car for six hours. Nope. Won't do it.) Larry will be out to see us on Wednesday. Cannot wait for THAT visit. Hopefully that will be it, for this week. I need to pace it. Gregory tires pretty easily.
If it seems like I've dropped off the face of the planet, it's because I have. The house out here is sided with lava rocks. We don't have internet service in the house and the lava rocks prevent wireless reception. Cell phones, wireless broadband, wi-fi. I have to be outside to get service. In the summer, not big deal. Now? Brrrrrrrr. Which is probably a good thing. I'm currently detoxing.
I have much more to say. I have pictures to post, captions, memories and sentiments to include. They are going to wait for another time. This has already grown far longer than it should be. If you are still reading, I'm quite impressed.
It's been busy, but "it's all good"*. 'til later, gotta jet.
*love you Jules.
PS~ I can crack a beer, anytime I want. Hah!
- Location:On The Water
- Music:In the Mood ~ The Roger Miller Band
Tentatively reaching out to people back HomeHome. I am far from entering society, I just need my few touchstones. Those that accept this for what it is and me, for what I am.
I am going to miss these solitary days. Days of just the two of us. Something so incredibly special.
I tell you what. This view will be one of the prettiest, yet. Can't wait to get there.
Circling the drain a little bit. Making this transition for Gregory as stress free as possible is our biggest priority. Also remembering to keep myself under control. He feeds off my emotions so easily. I battle my demons while he peacefully sleeps. Tonight's is pretty big. Larry and I have the incredible gift of being able to discuss this in very frank terms. With the understanding that our frankness does not mean lack of caring or emotion. You know that questionaire that James Lipton, the host of Inside The Actors Studio, asks of his guests? (One of my favorite shows. Evar!) As any fan of this show does, I've answered those 10 questions, over and over. I know the answer to number two. "What's your least favorite word?" RELAPSE I think it would be safe to say that it is every surviving cancer families least favorite word. Here's what most people don't know. There is a lifetime limit of how much chemo a person can have. With Gregory's treatment options, we have a "Three Strikes You're Out". We've used one. He can only have one more Bone Marrow Transplant. I consider that our trump card. We need to keep that option WAY back, hidden, safe and sound. Like I've said before, it's not as if we can prevent it. The only option we have is to reduce his risk.
It may seem like I am focusing on the negative. Couldn't be further from the truth. These are the thoughts that run rampant through a quiet brain. They need to be examined, brought to the light and try to shake to fear out. Otherwise, they will fester and decay. Surfacing even more vile, at a later date. Next time someone asks me, "Have you ever danced with the devil in the pale moonlight?" my response will be a resounding "Hell, yes! Time and again."
Just got my Notes From The Universe.
Have you noticed, that the more you hurry, the slower you go?
The more you wait, the longer it takes?
The more you worry, the less you dream?
But the more you live, love, and laugh, Mindi, the more you live, love, and laugh.
Weird?
The Universe
- Location:This Fragile Heart
- Music:The Wallflowers ~ One Headlight
At this point, I should ask for all the positive energy I can get. Except I'm not feeling it. Yes, there are plenty of things that can be helped through the power of positive energy. I believe this to be true. When it comes to this cancer world, I don't. Not because I've lost "faith". Gregory's body is what it is. We are talking about a genetic, dna, chromosomal abnormality. It it's there, it's there. We deal with it, if we need to. This we cannot even begin to think we can control. Yet, there are things I can control. Things that would put his graft at risk. Namely, illness and infection. The fewer people Gregory is exposed to, the less risk he is at for illness and infection. This and keeping him nutritionally healthy and limiting his exposure to chemicals. (On that note: if you have a recommendation for an all natural sunscreen, one that can be used daily? Please, drop a comment.) Call me crazy and paint me green, but I believe that cancer is mostly environmentally caused. It only becomes hereditary because we pass on the chemically altered genes. My opinion, for what it's worth.
Which is a great seque into my anticipation to be a stay-at-home mom. I'm looking forward to purging our shelves of processed foods. Of having the time to plan, organize and prepare foods from scratch. I love to cook. While working and then getting way involved with the OffSpring's school, I completely lost my ability and motivation to do this. Cannot wait. (Another opportunity to share some of your favorite recipes!!! Soups? Stews? Healthy snacks? Bring it!) I'm also hoping that this will help with living expenses, too. Waste, too. I'm looking forward to running the house, instead of letting the house run me. Yes, I'm a little bit nuts. This stuff totally revs me up.
Gregory developed an oral yeast infection, again. I caught it pretty quick, this time and he was started on Fluconozol on Monday. Not quite sure why he keeps colonizing. Another "wait and see".
We are still scheduled to leave Seattle on Sunday. We have an appointment with our oncologist back HomeHome on Monday. 8:10 blood draw, wait for results, then exam. I find myself envisioning this visit. While this is far from the end of our journey, I expect to see a huge black & white "Finish Line" tape at the entrance. These are the people that diagnosed him, worked to keep his cancer in check, went to bat to get us to Seattle as quickly as they could, anxiously waited with us, day by day, until we recieved The Magic Phone Call. Then we left. Went away to places known only to those of us who experience it. The community of providers, staff, facilities here in Seattle have been awesome. I'm not vested in them, though. Well, except for a few. Which was totally a defense mechanism. The people here will forever be imprinted on my heart and our lives. I hope to stay in touch with several of them. When we get HomeHome and some time has passed, I have a ton of stuff I want to get out about the staff here. All good, but I felt funny about posting it while we were here. Meanwhile, the staff back home? I'm so completely vested in them. It's going to be an emotional clinic visit.
What it all boils down to: Gregory's exposure to ANYTHING needs to be as little as we can humanly provide. My goal? For him to not be hospitalized, even once. Can we accomplish that in the next nine months? *shrug* Don't know for sure, I only know that Larry and I are at the helm and all is good. The next nine months is a small sacrifice for the rest of his life. Period.
*I keep meaning to mention this. When Gregory was born, he had the beginnings of a sixth digit attached to the pinky on his left hand. It was about the size of a small marble, had the beginnings of a teeny-tiny fingernail and was attached by a "string" of skin. It dangled off of his pinky. They tied off the stringy part and let it shrivel up and fall off. (I kept it. Skeevey, huh?) Every once in a while I find myself thinking back to this. Might this have been a precursor of things to come? We'll never know, but it always gives me pause. 'til later, gotta jet.I was thinking about the video that I made. Gregory asks to watch it, from time to time. Cute, huh? Specifically the pictures. While they can be triggering, depending on my state of being, they are also incredibly comforting. They feel like home. At one time, I would have cringed in fear upon seeing pictures like that. I see other families similar pictures and even THEIR pictures feel like home. Which lead me to think about memories. There is no question that memories fade with time. There's nothing like having kids to prove this. Yes, there are certain moments that are forever imprinted to the heart, but everyday stuff simply fades. Having pictures helps to keep those memories alive. Someone might think "Why in the hell would you want to keep THOSE memories alive?" Well, they are a testament. Honestly, what is the difference between pictures of soccer games, school performances, ballet, karate, messing around at the park......... and this. When it comes down to brass tacks? Nothing. Once again, I find us with a few weeks of the "salad days". Gregory is incredibly stable and we have a routine. At least for the next 10 days. Then it will be another transition. A big one, too. I'm quite thankful for these extra days that we have spent in Seattle. It's given me time to exercise my demons and come home in a better frame of spirit. Better able to be present for Larry and the OffSpring. I've also been working with Gregory and his impatience. Which is to be expected. It's been just the two of us for the last five months. I've been able to satisfy his every need at the drop of a hat. His needs are not as urgent and it doesn't hurt him to have to re-learn patience. Granted, it's intensified with the steroids. Thankfully he hasn't gone completely ballistic. He is also re-learning some independence. I'm trying to ease his transition, too. I hope it's safe to start talking about going HomeHome. 'Cause I have started that dialogue with him. When I first brought it up, he responded with, "I don't want to go home.". He's been away for so long, I would not be surprised if he doesn't remember much. He has a circle of security, too, and it's much smaller than mine. Remember this is going to be key, in the weeks to come. Trying to keep an even keel. Not get overly excited about stuff, re-introducing stuff with calm. I've also been thinking about the up-coming holiday season. This is going to be the quietest, lowest key holiday season we have ever experienced. I'm really looking forward to it, too. No company. Just us. My biggest emotons, now, are teritorial and protective. Of my entire family. I want nothing more than to wrap all four of them in my arms and not budge. Curtis and I were talking about us coming home. Curtis has a super hard time with transitions. (He has Asperger's) The greatest single defense I have for this is preparation. Tonight I started the conversation about us coming home. How it is going to be hard to learn how to live together, again. How we have been apart for so long that we might have forgotten how to live together. His response, "There's one thing we haven't forgotten. How to love each other." *heart breaks* Coming from Curtis, this was huge. From my viewpoint, I think we are learning how to love each other.
This is the last group picture taken, before Gregory was diagnosed. It was taken January of 2009. The caption below is from my flickr account.
Curtis has been participating in the National Geographic Bee. Today was the final round for his school. He didn't make it to the state-wide finals, but he handled it with such grace. One of his fellow Montessians did, though. Which is super cool. We "celebrated" with a trip for ice cream. Our local shop, The Scoop was CLOSED so we headed to their favorite, Maggie Moos. Calling what they serve "ice cream" seem blasphemous. Yet, the kids LOVE it.
Good job, Curtis. You handled yourself so incredibly well.
Some random things, I've been meaning to get down. This child of ours is so incredibly amazing. The time that we have spent together has given me so much. Curtis' upbringing has been extremely challenging. There are so many parenting things that I just have not had the opportunity to do with Curtis. Even though AnnMarie is completely different, Curtis requires a level of awareness that is exhausting. Gregory and I have had the time to play, time to read, time to make-believe, time to groove to music.
When Gregory and I were waiting at the UW ER department for seven hours, we had a ball with make-believe. We had taken an isolated corner and several chairs. We had to chairs, with arms, facing and touching one another. We were seated facing one another in these. There were other chairs, perpendicular to these two chairs. I was trying to create a distance barrier. A "don't come any closer" area. It worked. We sat there and chatted and had make-believe the entire time. He did have his Nintendo DS, but it does not suck him in. At one point we got on the topic of worms. Gregory wouldn't give me a kiss so I started singing "No body likes me, everybody hates me. Think I'll go out and EAT SOME WORMS!" Well. We had to eat worms at that point. We started out with normal sized earthworms, slurping, trying to hang on to them while they wiggled, enjoying how succulent they were. Small worms got boring. We then handled GINORMOUS worms. Worms larger than the largest Boa Constrictor you've ever seen. Trying to handle them, having them slip from our grasp, holding them aloft to get a better handle, trying to determine how on earth we were going to get it in our belly. Finally determining we would start with the tail. Except, which end is the tail on a worm? Then holding the two ends together and just munching down. We then went on to Fire Flies. Seeing them fly in the air, plucking them out and admiring their beauty. Then I "found" a piece of string and a giant needle. We proceeded to make a garland out of fire flies. Carefully hung around the perimeter of our chairs. (Oh yeah, we are both wearing masks during this, too.) We then decided that we needed some spaghetti and meatballs. (Cloudy With a Chance of Meatballs has been on our minds.) We used a giant pottery pasta bowl and filled it with long, white tape worms and used the fire flies as meatballs. Finding the giant spoons to toss the pasta and smaller bowls for eating from. I tell you, doing this with him has been so amazing. He plays along and is completly enraptured with it. It's heaven.
We also pretend to be all kinds of Mommy and Baby animals. Cats were really popular, for a while. Currently it's birds. We watched March of the Penguins and I think he soaked up alot of that. Except our nests are made from the copious amount of blankets that we have. He somehow knows the comfort of a nest and we surround ourselves with blankets and hunker down for cuddling, chirping and Mama-bird-feeding-baby-bird. He requests a nest now, too. "Mommy, I need my nest." I love it, this is divine.
Well, it would appear that I had alot to say, after all. *shrug* I never know what's going to come out. 'til later, gotta jet.
- Location:Ronnie Donnie ~ 98105
- Music:Rob Thomas ~ Ever The Same
