And his John Sheppard hair...it does that all on its own.

Things have been really hard lately. I am missing Steve more and more as it starts to sink in. Driving through his parking garage the other day, I just burst into tears out of nowhere. Just being there brought me back to that day in August when he called me for help when he suddenly couldn't use his arm or speak and then everything that came after.

I keep thinking about the unfairness of it. I had these same thoughts when my mom died 12 years ago. Why do we have to lose good people? Why do I have to lose the most important people in my life? After a long time, I was finally able to learn and grow from my mom's death. I have often said that losing her changed me in many ways, mostly for the better. Of course, I couldn't see it then, and as such, I have difficulty seeing it now. I can only hope that losing Steve too will make me a better person.

I am also feeling a lot of stress in dealing with the estate. I knew it would be difficult but there have been some things happening that I didn't expect that make it that much harder. I have had a couple of sleepless nights with everything going through my head.

As always, my son is my bright spot. He's recently learned to stand by pulling himself up. It's so amazing to see him growing and getting stronger and learning new things every day. He makes me so happy but I'm also so sad that his Uncle Steve isn't here to see it.

Ugh! Denver is crawling with Steeler fans today. Where did they all come from?! (Don't say Pittsburgh.)
GO BRONCOS!

It's been almost two months since Steve passed away. I guess it's about time to end radio silence.

Things are going okay. We all miss him every day in so many big and little ways. In many ways, I don't think I've even begun to really process it. I feel all the small things, every time I want to pick up the phone and call him or when I think of something that would have made him laugh or ask him a question about something as I so often did since he knew so much about everything.

But on the larger scale, the void where he was, just hasn't hit me. It's still too awful for me to really think about. I catch myself twenty times a day starting to think about it and pushing the thoughts away because it's still too much. I find it hard to watch football now because it was such a part of him. But how I do wish he was here to see the Broncos off to such a good start! Then we could debate whether last year was Cutler's fault, Shananan's or both.

In the mean time, we are doing the things that need to be done. Steve made me the executor of his estate, so it's been hard, but with Mr. Fantastic's help, I've been getting started on getting his affairs settled. It is so sad to wrap up what's left of a life. It's awful, to see all the things he left behind. It's awful to see things he started but will never finish. I picked up a book with a bookmark in it, realizing that he would never know the ending and it made me so sad. To look at his DVR and see all the things he'll never get to watch. To know he'll never find out who won the World Series of Poker this year - we were all so excited to know Phil Ivey made it to the final table, and now he'll never know how it goes. All these little things just break my heart.

I don't know when it will stop being the little things and start being the big things. Probably I'm shielding myself until I get the estate taken care of so I'll just be able to handle it. When it's all done, I imagine that's when it's all going to really sink in. One day at a time, right now.



In happier news, my little boy has helped to make this bearable. He is my absolute joy, my reason for getting up every day and going on and smiling and laughing. Peanut just turned eight months at the end of October and is flourishing. He's been threatening to crawl for a while now. Right now he's doing sort of an army-crawl type thing. I call it the "wounded soldier" because it's mostly using his arms and one leg while he drags the other behind him. But on occasion, he'll get up on all fours and take a "step" or two, then sort of flop over to his butt. Won't be long now until we won't be able to keep up with him.

I didn't know it was possible, but Peanut has become even more vocal than before. Lots of ba-ba-da-da-la-la stuff, plus some yowling and little noises that I call chirps. It is a delight to hear him babbling away to himself or to us. And he's still laughing all the time. However, he does get this charming little disgruntled look on his face when he's not laughing or squealing or chattering away. I can't wait to hear what his first word is. Knowing him, it won't be mama or dada, it will be yumyum.

Speaking of yumyums, he is still nursing but has finally decided that he likes people food. Hooray! He still hates formula and I don't know that we'll ever get him to take it, but I was despairing that he'd ever start eating food and using all those teeth of his. He's got seven teeth now! Four across the top, plus the bottom two in the middle and he just cut the next bottom one on the right side.

I gave up on trying to get him to eat baby food - I think he didn't like the puree texture. But he is happy to eat what we're eating. So far he basically seems to like any "grown up" food that we give him - mashed potatoes, chicken, sweet potatoes, whole grain pasta, grapes, pears, etc. Plus I've been mixing baby oatmeal into fruit puree and making it thick and lumpy and he loves that. As long as it's not the thin, runny consistency of baby food, he seems to be okay. We tried some pea puree the other day that he wasn't too sure about but otherwise, he's chomping at the spoon for whatever we give him. Also he does well picking up the bits and feeding himself. Since the puree thing was a no-go, we are generally practicing a sort ofbaby-led weaning, which basically means we let him do the eating himself, with the exception of the oatmeal/fruit stuff. But we also let him handle the spoon and stuff to help him get used to it, and we let him reach for it as opposed to just sticking it in his mouth indiscriminately. I put a variety of foods on his tray and he decides what he wants to eat and how much. I'm going to try him with yogurt this week and see how that goes.

Peanut finally had his very first diaper rash last week. Amazing that we made it eight months without one! Don't know if that's the breastmilk or just being fanatic about changing him all the time, but we're thankful he's had a healthy butt for the majority of the time.

Halloween was a success - at least, there was no crying, so I'll count that a win. Peanut had two costumes, a monkey and a pumpkin. Both were adorable. Check out the awesome pictures at the link below.

New pictures here, plus new videos here (and more to come!)

My reason for smiling every day. My happy little monkey. I could not be more thankful for him.



More videos here and new photos in the Peanut Gallery too.

As many of you already know, Steve passed away Monday morning, September 21.

There are no words to express the magnitude of this loss. The world is lesser for having lost him; we are better for having known him.

I can't begin to thank all of you for all the support you've given me and my family for the last two years, and especially the last few weeks. You have our deepest gratitude.

I am putting together a memory book of Steve, so if you have any stories or favorite memories of Steve that you'd like to share, please send them to me to be included.

Mr. F, Monkey, Grampa and I are watching the Bronco game with Steve. We had his hospital bed all set up in the living room right in front of the giant screen t.v. so he can keep up with all his football when he's not dozing. Mr. F is so sweet - he went and got Steve's Champ Bailey jersey and laid it over his chest since he can't put it on for the game.

Steve's had some ups and downs the last few days. Having some pain in his head, especially near the right temple where we know a tumor to be located. I can only presume that means it must be growing. In the last day or two, his breathing has gotten kind of rattly. That's probably partly due to missing half a lung and partly due to the way things progress. He didn't rest much the first few days but he slept a lot last night and some today. We are doing our best to keep him comfortable but it's hard to know just how he's doing when he can't tell us. Sometimes it seems like he's drifting away from us, and other times he's so alert and awake and aware of what's going on and the conversation around him.

It's been funny how expressive he can be without words! Especially how sarcastic and funny he can be without saying a thing. I love it when he makes a joke and I get it just from his body language. Everybody always said we had our own little language and I guess they're right. We still understand each other even without talking.

We've had a parade of people in to visit Steve since we brought him home. Work colleagues, college friends, high school buddies, family. All of them hold Steve in such high regard - everybody loves him. A trait he has in common with our mom. And it's been really great for me to see guys I've heard a million stories about but haven't seen since I was a little kid, and to put faces with the names of other people I know to be part of Steve's life. Steve's been thrilled to see so many dear friends and just lights up when I tell him who's coming to visit next. I know he sure wishes he could chat with them like he wants to.

Talking with everyone and especially receiving the all the emails from all over has been amazing. I always knew that Steve was a wonderful, generous, kind person, but I'm his sister - I'm prejudiced. Hearing the glowing way others speak of him and the great stories they tell has made me so proud to be his sister and so pleased to have him a part of my life. We gave our son Steven for a middle name and I can only hope my little Monkey grows up to be just like his Uncle Steve.

I'm going to be pretty busy for the foreseeable future, and I don't know if or when I'll be able to get back to everyone individually, so I just want to say thank you to everyone who's called, posted and emailed. Your words of love, encouragement and support mean so much more to me than I can convey.

We are all doing our best hanging in there and making Steve as happy and comfortable as we can. Knowing my family and I are in the thoughts and prayers of so many is helpful in so many ways. Thank you all so, so much.

We received sad news on Steve yesterday. We spoke with his doctor regarding his MRI from the 11th. The new scan shows further disease progression and more tumors in the brain, including regrowth in the area where he had the tumors removed on the 3rd. This is why he hasn't seemed to be getting any better since the surgery.

His medical team has done their absolute best for him but there is nothing more they can do. He is not experiencing any pain, but he will not regain the use of his right arm, nor will his normal speech return. His oncologist said it would be optimistic to expect that he has two months left. From looking at the MRIs and seeing just how many tumors there are, I am not expecting it will be that long.

We are bringing Steve home from the hospital tomorrow under hospice care. He wants to stay at his place as long as possible, and my dad, brother JT, Mr. F and I will share taking care of him. There will also be a nurse that comes in 2-3 times a week, and we are talking about hiring another nurse to help out. At this point, Steve's whole right side is weak and he has difficulty walking so he will mostly be in bed.

I am in turns numb and near hysterical with grief. Losing my mom was hard but this will be even more difficult. I have known him longer and better than I knew my mom. Not only is he my brother but he is one of my - and Mr. F's - best friends in the world. I cannot even begin to imagine what life will be like without him.

Kanye West: giant douche or turd sandwich?

Have been in to see Steve every day since surgery. He doesn't want me to spend too much time at the hospital and protests at me if I do, but I feel like I should at least go see him every day, if only for a few minutes. Mr. F and Peanut always take me so they can see him too.

No real change - still can't move the arm much and still has the expressive aphasia (that's what the trouble finding words is called). I think he's getting a little discouraged since there hasn't been much improvement in that area.

He says he's not having any pain and is just really tired. He says he's not up for visitors or calls because it's so hard to talk and wears him out even more. I've told friends/family that if anyone wants, they can send email or cards to me and I'll bring them to him. I think that would do a lot to cheer him up.

I hung up some pictures in his hospital room - me and the baby and Mr. F - not just for Steve to look at but so the staff knows that he's a person with people who love him. And I put up a photo of me and Steve and Mr. F together at last year's Fantasy Football draft so they can see what he looks like in healthier times. Not that his nurses and CNAs haven't been great, but I like to remind them that he's not just another one in a long line of sick people. With him unable to talk much, and mostly just sleeping and lying in bed, I'm afraid they won't really get to know him as a person. Hopefully our daily visits and the photos will help.

I'm hoping to hear from the surgeon soon. Tomorrow is a week since surgery, so the plan is to assess him in the next few days and move him to the inpatient acute rehab center they have at the hospital. He's told me he doesn't feel ready to be at home on his own yet, so this will be a good step for him.

Please continue to keep him in your thoughts.

Steve's doing fine. Was still a bit sleepy when we got to see him last night around 6 and had some blurry vision. Not sure yet about his arm and speech but we think both seem a little better. Fingers crossed! He has a bit of a headache but is in good spirits.

The surgeon got the mass out - it turned out to be two tumors right next to each other. It came out cleanly and he said he was happy with how it went. Apparently, with melanoma, it doesn't invade the brain tissue so much as take up space, so when they take the tumors out they almost just fall right out because they're not attached to anything inside.

One bit of bad news, though - yesterday morning's MRI was much more detailed than the previous MRIs he's had, and it shows what looks to be 12 small tumors instead of the previously thought 5. They're not sure if those are new or just showing up better on the more detailed MRI. The plan is still to get as many as they can with the gamma knife on the 14th and go from there.

Sure hope this aggressive treatment will be able to keep on top of what's happening in the brain. I wish we knew whether those were new tumors so we'd know if things are moving really fast or what.

So after everything that happened earlier this month with the two ER visits and the speech problems and losing the use of his right arm, Steve and the rest of us were getting increasingly concerned about Drs. Jotte & Lamond's wait-and-see approach to treatment.

The idea that Steve has a tumor in his brain that has burst and was/is bleeding, therby putting pressure on certain parts of his brain and making certain parts of his body not work is incredibly scary. What's even more scary is when your medical team basically says, "Eh. It'll get better," and sends you home literally without doing anything. Steve is so frustrated with both the arm and the trouble speaking and we've seen no improvement since they sent him home. It's terrifying, for him especially, to think that it might never get better.

With all of us feeling more and more uncomfortable with doing nothing, Steve decided to get a second opinion from the Cutaneous Oncology department at the University of Colorado Anchutz Cancer Center. We got quite a different story from them. Bottom line is that Steve is scheduled for surgery tomorrow to have the tumor removed.

We met last week with Dr. Karl Lewis, an oncologist, and also with Nurse Practicioner Amanda Brill who works for the neurosurgeon Dr. Robert Breeze. We met with Dr. Breeze today. What this team has told us is that the lesion that is bleeding is too big to reabsorb and needs to be removed. The blood/fluid surrounding it may reabsorb but the tumor itself is large enough that it needs to come out or the arm and speech won't improve. They let us look at the MRI and we saw that this tumor and the surrounding blood clot is about the size of a golf ball. And we also found out that there are four to five more small tumors, which was complete news to us. The plan is to get those tumors using the gamma knife (an outpatient procedure) on Sept 14.

This is basically completely the opposite of what the previous doctors were doing but after meeting with the new doctors, we all feel so much more better about Steve's future. It felt a lot like the previous doctors just didn't know what else to do or like there wasn't anything more that they could do. We all have a renewed sense of optimism with this new treatment plan. Basically, they feel like you have to treat melanoma aggressively, and make sure you treat the systemic disease (in the body) in conjunction with treating the brain.

I think the big difference is that Dr. Breeze's and Dr. Lewis's practices have been working as a team for twenty years treating melanoma specifically, whereas Dr. Jotte and Dr. Lamond are just two doctors that I don't know if they ever actually spoke to each other regarding Steve's treatment, let alone formed a plan of attack as a team. I feel personally that Steve's prognosis is much better with this new approach.

Surgery is at noon tomorrow following an MRI at 10:15. It will take 3-4 hours, and then he'll go to recovery so we won't see him until the early evening. He'll spend the first night in the ICU, but then they plan to move him to a regular room early to mid day Fri, and hopefully have him home by Mon. The arm and speech could be better right away - within hours or a week, or it could take a few months - no way to tell ahead of surgery. It's even possible, since they're mucking about in the motor strip of the brain, that the arm and speech could be worse for a while until the swelling goes down. Should that happen, they'll assess him and may send him to an acute inpatient rehab center for a short time until they feel like he can take care of himself.

So, please think of him tomorrow and keep him in your thoughts and prayers, send good karma, rub a rabbit's foot, whatever you can do to help him out. And as always, thank you so much for your support. It means so very much to him and to me.

MonkeyBoy (as Grandpa calls him*) turned 5 months in July but as you know, I've been distracted by the situation with my brother, so I'm late. So late in fact, that he turned 6 months yesterday so I seem to have missed out on the 5-month update. For posterity's sake, here's things that have happened in the last couple of months.

Big news: He learned to sit up! All by himself! The first week of August we were at my dad's and I had just finished feeding Monkey and had him on a pillow on my lap. Like I always do when he's done eating, I sat him up on my lap - normally he leans back against me, but this time he leaned forward and sort of sat there. I thought maybe the pillow was making it easy for him, so I plopped him on the floor and poof! There he was, sitting all by his lonesome. Luckily, I told Mr. Fantastic what I was doing first and so we captured it all on video. It was terribly exciting and exceedingly adorable.
                   
( Read more... )
So, all is well in Peanut Land and I will hopefully be back on track for next month's update. Stay tuned for such newsworthy evens as Peanut tries Peas! and Bathtime for Monkey: Is it time for the big tub yet?

*This is partly because of the sitcky-outy ears and partly because the boy has monkey feet. Crazy, long prehensile toes! He does things with them! Grabs his toys and plays with them using his toes. Holds things with his feet...when I'm nursing, instead of "twiddling" with his hand, he twiddles with his feet. He puts them all over my face, grabs my nose, my shirt, everything. It's the craziest thing you've ever seen.

ETA: P.S. New pictures, starting here!

I have 3 Dreamwidth invites if there is anyone who would like one. First come, first served. Let me know!

So, as I previously mentioned, I'm long overdue for a 5-month Peanut post, but things have been a little crazy these last two weeks. My brother was back in the hospital for a week - we just brought him home on Monday afternoon and had to bring him back in yesterday.

Steve called me the morning of Tuesday the 4th because he was having what he thought was a stroke. ( Read more... )
So, I'm trying to keep my spirits up (and his) and would dearly love your good thoughts, wishes and karma to help him.

Long overdue 5 month Peanut post coming soon.

I have, right now, comfortably on my person, a brand-spanking-new pair of jeans...in a size 10. Please join me in celebration! *\o/*

I am only 10 lbs away from my goal weight now. This means it is entirely possible that in my adult lifetime, my pants size might actually become one digit. It boggles the mind.

My dad sent me this email today:

The American Medical Association has weighed in on the new health care plan being developed by the Obama Team.

 

The Allergists voted to scratch it, but the Dermatologists advised not to make any rash moves.

 

The Gastroenterologists had sort of a gut feeling about it, but the Neurologists thought the Administration had a lot of nerve.

 

The Obstetricians felt they were all laboring under a misconception.

 

Ophthalmologists considered the idea shortsighted.

 

Pathologists yelled, "Over my dead body!" while the Pediatricians said, 'Oh, Grow up!'

 

The Psychiatrists thought the whole idea was madness, while the Radiologists could see right through it.

 

Surgeons decided to wash their hands of the whole thing. The Internists thought it was a bitter pill to swallow, and the Plastic Surgeons said, "This puts a whole new face on the matter."

 

The Podiatrists thought it was a step forward, but the Urologists were pissed off at the whole idea. The Anesthesiologists thought the idea was a gas, and the Cardiologists didn't have the heart to say no.

 

In the end, the Proctologists won out, leaving the entire decision up to the assholes in Washington.