My ray of sunshine...

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.

Final update on Steve

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.

Steve status

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.

Thank you.

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.

Latest on Steve

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.

Not much to update on Steve

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 ok

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.

Latest on Steve

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.

Monkey (or the baby formerly known as Peanut): 5 & 6 months

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.

He's getting better at sitting for longer periods - but sometimes he will get distracted and reach for something or just forget what he's doing and tip over, but we're working on it. Practice involves the use of many, many pillows as our hardwoods are not forgiving to tender little baby heads. Monkey is also thiiiis close to crawling, I think. He's doing this sort of army-crawl thing - only backwards - and when he sleeps, he sticks his butt in the air, which I've heard is a sign crawling is nigh. We've also started him using a sippy cup, trying to get him used to water and a new method of drinking. He took to it right away, although he makes a yuck face when he realizes it's just water in there. He's even drank from a straw which surprised me that he figured that one out on the first try.

Monkey has definitely found his voice and spends much of his time babbling away and also making "pbbbbbt" raspberry noises with requisite spit bubbles. LOTS of spit. Also there's this happy little "arooo" noise he does that comes with a super cute face. He continues to be the drooliest kid on the planet, despite the fact that I don't think any more teeth are coming for a while. He has his two front bottom teeth and they say the top two are next but so far they don't look like they're coming anytime soon. He chews on his hands a lot and has now discovered his feet in earnest. It's really hard to change a diaper when he's got his foot in his mouth. Babies are bendy! Plus, if it's not his foot or hand in his mouth, it's whatever is within grabbing distance. They say babies use their mouths to explore the world, and boy does this one! He still won't take a binky with any regularity though - there was a brief week or two when he started taking one so we rushed out and bought some more, but he's back to not liking them. And he does a thing where he doesn't so much suck his thumb as chew on it, with it stuck way back where his molars will be.

"Arooo!"

We also have just started him on solids. My cousin Heidi and I did a day of baby food-making for our boys - steaming & pureeing a bunch of fruits and veggies and then freezing in ice cube trays. So far the jury is still out for the most part. We have tried peaches, pears, banana, avocado, sweet potato and rice cereal. Mostly everything gets spit back out although he does seem partial to the pears and might actually be swallowing some of that. Until he's 1, solids are mostly for fun and learning new textures and tastes, not for nutrition. Which is a good thing because some of the yuck faces he made while eating were hysterical. We did a video of the first time and at one point, he gave me this big smile, so of course I stuck some food in there and the speed at which he went from smiley to yuck face is hilarious. He looked so betrayed. Evil, evil Mommy, where is the boobie juice?

So, it turns out Monkey is a boob snob. We thought it might be a good idea to try and introduce some formula in case I'm unable to pump enough boobie juice for times when I have to be away. Unfortunately, in a disastrous trial by fire, Mr. Fantastic learned that formula is NO GO. He wound up having to drive home from his mom's with a hungry, crying baby so I could feed him. He called me from the car and put me on speaker phone so I could talk to Peanut, which would calm him down momentarily until he figured out that I was not actually present and the yumyums were not forthcoming. Poor Mr. F. That was a rough one for him. We are going to try some other formula brands and maybe work on getting him to take a little each day so he'll get used to it. The majority of the time he'll still have breastmilk, but we'd like to have the option just in case.

We had his 6-month checkup and shots yesterday, including flu shots for all three of us. As always, he cried for a minute or two and Mommy cried for ten. The doctor (Dr. Sarah this time) said he looks great - good strength and control, and she commented on how resourceful he is when she put the eye/ear scope thingy down on the exam table and he wanted it but couldn't reach it. So after a few tries of reaching for it, instead he started pulling the paper table cover towards himself until the scopey thing was close enough to grab. Smart boy!

This month he weighs 17 lbs, 5.5 oz and is 27 3/8" long, putting him in the 50th percentile for weight and 80th for height. Funny, I keep thinking he's gotten quite thick - in fact, I've taken to calling him Chunky Monkey - but people still comment on how skinny he is! Also, we get asked a lot if he's a boy or girl (despite the fact that he wears a lot of blue and baseball hats). This is because although I call him the Cutest Baby in the World, a more accurate word is pretty. He has ridiculously long eyelashes and big blue eyes and this little tuft of blond hair that sticks up in the middle of his head.

Aside from being beautiful and intelligent, Peanut is still the happiest baby I've ever met. He is so content, so happy to just sit and play or be held. He hardly ever cries except when he's hungry. He takes to strangers easily - so far has no fear of being held by someone he just met. He smiles and laughs all the time, especially when he sees Mommy or Daddy. I cannot tell you how much joy it brings us when he just lights up at us. I hope he has some idea just how much we love him and how much our lives have been enriched with his presence. I think having a child my own has finally given me an understanding of just how much my parents loved me.

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?

Brother update

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. His right arm and hand had stopped working and he couldn't feel them and he was having trouble speaking and finding words. We had a very disjointed conversation because we were both panicked and he was unable to tell me what was wrong. Through a combo of me playing twenty questions and him telling me as much as he could, we determined that he wasn't bleeding and could breathe but couldn't use his hand, didn't want an ambulance but wanted us to come get him and take him to the ER. I have never heard him sound so scared and that in turn scared me. I hung up with him long enough to get Mr. Fantastic and we loaded Peanut up and raced over.

I called Steve back as soon as we were on the road because I was imagining him sitting all alone in his car, not being able to do anything and being scared and so I wanted him to know I was there, that we were coming as fast as we could. Since he still was having trouble talking, I just told him where we were and played more twenty questions. It was weird, he could understand me and knew what he wanted to say but certain words just wouldn't come out. Like I asked him what floor of the parking garage he was on and he couldn't tell me. He could say, "I'm on..." but couldn't get out the word "three" even though he was staring at the big number 3 on the wall.

We got him to the ER and there was more twenty questions as he and I tried to explain what had happened and tell them about his medical history. They took him off pretty quickly for an MRI, and when he got back we had another scare. They wheeled him back into the little curtained area where he'd been and I'd been waiting. As the nurse was fiddling with the various monitors and tubes and things, I was asking Steve how it went and he started having a twitch on his right cheek. Then he started sticking his tongue out and I asked him why he was doing that and suddenly he started having a full-body seizure. It was awful to watch and to just have to call for help and not be able to do anything. It didn't last long and they quickly gave him some anti-seizure meds.

That was the only seizure he had, but his right hand was still not working. He spent a few days in the ICU, then got moved to a regular room where he had visits with physical therapy and occupational therapy. He had several scans and basically the brain doc said it was a metastatic brain lesion that burst and the bleeding into the brain causes swelling and pressure, which in turn causes the stroke-like symptoms. Apparently, given time, if the bleeding can be stopped the brain will reabsorb the fluid and that should relieve the symptoms. They keep assuring us that use of his hand will come back eventually if the swelling and pressure go away.

I was not comfortable with this "wait and see" approach, but we're told it's better to give the brain a chance to heal itself as opposed to going in surgically to drain it with a shunt or something. So they ended up sending him home on Monday with medication for seizure and blood pressure and appointments for more OT and scans. Through it all, Steve was basically feeling fine - no headache or pain of any kind and all the doctors were amazed at how well he presented despite what was going on in his head.

He was home all week and basically doing ok. We did some grocery shopping for him but he has been mostly self-sufficient even with the right hand still not working. He can move it and grip loosely, like to hold a highlighter, but not squeeze tight enough to open a factory-sealed jar. The OT told him to keep using it for everything he could, even if it means taking longer and making more of a mess than with the left.

We thought things were going well since he's been feeling and doing fine, and then yesterday he was on the phone with a friend and started having trouble finding words again. They hung up and he called me. I know how much he hates being in the hospital but I told him I thought we had to go back to the ER, since it was Saturday and I didn't think there was any alternative.

They admitted him to the ICU again and kept him there overnight last night. They did another scan and there's some discussion on whether it's bleeding in a new area or more bleeding from the same area or what. They are moving him back up to a regular room again today and the brain doc will by to see him tomorrow and make some decisions. I'm still uncomfortable with the waiting-and-seeing but I'm trying to keep in mind that it's supposed to be better for him in the long run.

They have him on steroids this time, which is supposed to help the swelling and I think it may be having some effect. He says it feels like his right hand is working a little better - not major improvement but enough to make him hopeful. So, we'll know more tomorrow but they've said he could possibly even go home again as early as tomorrow.

This whole thing has been incredibly scary - I thought more than once, "Is this it? Is this when we lose him?" I try not to have the mindset that we're going to lose him to this cancer but sometimes it's so hard to push that fear back. For all that it was terrifying, he seems to be just fine now (with the exception of his right hand, of course.) I don't know what to make of it. I mean, a bleed in your brain can't be good but nobody seems to be in a big rush to do anything. Is it because it's a lost cause and they just aren't saying it? Or is it really as simple as they say? It's his brain. But sometimes these things can be deceptive.

So, I'm trying to keep my spirits up (and his) and would dearly love your good thoughts, wishes and karma to help him.