We're in the ER. In the middle of yumilicious pizza dinner from Tomato Pie, Pablo said that his bump hurt.
So, we left Francine and Grady and the Three Bs - Beth, Butch and Bo - at the dining room table and ran to CHLA with Polly at our side.
The concern was that his tumor may have ruptured. He went down the backyard slide rough a couple times before dinner. And the dogs bumped him a couple more.
Two docs exammed Pablo, and determined that he's OK. The pain could have been the chemo killing tumor cells (they explained the exact science of it; I'm not gonna attempt to duplicate the info here lol).
The main thing is, he said the pain had stopped, and all his vitals checked out.
So, we're in the green zone. Safe and sound.
A funny aside about the doctors and nurses at CHLA that, I have to note, Jo Ann verbalized before I did (don't want to get myself in trouble): the majority of the medical professionals we've dealt with are, in Jo Ann's words, "hot."
Polly agreed. Immediately. And added that many of them have nice pants.
I asked what I should title this post. Somebody said "Hot for doctor."
Pablo shouted out, "Hot for chicken."
And he wins!
Saturday, May 31, 2008
We're in the ER. In the middle of yumilicious pizza dinner from Tomato Pie, Pablo said that his bump hurt.
All of those thoughts were reasonable. It was also reasonable to let all the thoughts go just as fast as they came, to make room for reality.
And the reality is that some of the past 14 days have been tough. But today, yesterday and the day before have been great. Especially today. It's beautiful outside. Everyone's in a great mood. We've gotten a lot of stuff checked off our family "to do" list.
When I got home from my ride, Grady had two friends over - Ruby and Hayley. They were hangin' in his room, playing guitar, messing about on G's laptop, and playing with Pablo. Jo Ann took Grady out shopping for a graduation suit. His graduation is Friday. What could be more fun for a mother than taking her firstborn son shopping for a suit that he'll wear on such a special day?!
Pablo and I hung back at the house. He wanted to watch "Anastasia" for the millionth time. It brings a smile to his face. I told him that if I pushed his nose, the movie would pause. So I pushed his little nose, and the movie paused. (He didn't notice that I was tapping the remote with my other hand.) Then, he pushed his own nose. The movie stopped. He B U S T E D out laughing. One more push on the nose–the movie kicked back in. More laughter. "It's maaaaagic, Papa!"
Is he going to end up in a therapist's chair over this in 20 years? I don't even care. It brought some belly laughs for both of us. He needs it more than he will ever know.
After the sleight-of-remote action, we popped over to Rachel and Clint Lukens' house to meet their five-day-old baby, Jonah. What a gorgeous little fella–can't wait for Pablo to show him the ropes! And his doting parents are much the same. I remember when they went on their first date. To see them today, bleary-eyed from lack of sleep, is just SO COOL! (Not that they are tired, but that they are now parents–yknow what I mean!) Rachel is one of my best friends in the entire world. She has been a ray of light in my life since we met over 10 years ago.
OK, time for dinner! Talk l8r.
I woke up at 6 a.m. Pablo, Jo Ann and Grady were still asleep. Our second night in a row of good, solid sleep. What a simple gift. Seeing them asleep as I left our bedroom made me happy.
After eating a quick breakfast, I got on the bike and went out to meet Michael Ward at Travel Town in Griffith Park. Michael and I have known one another for about a year, and due to schedule conflicts, we've never ridden together. Michael is the guitarist in Ben Harper's band the Innocent Criminals, and has been in The Wallflowers and School of Fish (I was fired from my college radio show for repeatedly playing their B-side "Greatest Living Englishman," which unbeknownst to me, had a naughty word in it!) He is also the author of the great children's book "Mike and the Bike" - a fave of Pablo's. He has a new book coming out soon - "Mike and the Bike Meet Lucile The Wheel." Can't wait to snuggle up with P and read that one.
Anyway, when Michael got word of Pablo's cancer, he sent me a note saying the words we've heard from so, so many people: "Anything I can do, just ask." I had an immediate request of him: LET'S RIDE DUDE!
Getting out on a bike is like nothing else for me. It's a physically grueling cosmic cleansing–two things both Jo Ann and I need these days. For realz. I keep stressing that we've both been told by the doctors that need to be sound of mind and sound of body in order to make it through this marathon of Pablo's treatment. The bike does both for me. Jo Ann finds this with Bikram Yoga, which she is going to do in the morning. We are keeping one another going in this respect. Sometimes, we just want to lay on the couch And. Do. Nothing.
Back to mt ride with Michael: he and I immediately set it up for 7 a.m. Saturday. The destination was the San Gabriel Mountain range. We both wanted to hit it hard, and then get home to our families. I was really looking forward to this ride, and getting to know Michael better while as we pedaled our way above the clouds. We had a great time, telling stories, laughing our butts off, talking music and bikes and life.
We climbed to Red Box, the ranger station at the bottom of Mt Wilson. It's 4,666 feet above sea level. Just typing that makes me tired! Once we got there, we turned around and flew 15 miles down Angeles Crest Highway, dropping into La Canada. As we approached Foothill Boulevard, we pulled off at the Shell station - Michael wanted to pick up a drink.
As he stepped out of the gas station, he was on his mobile phone. I could hear him saying, "I'm riding with my buddy Jeff. His little boy is five and was just diagnosed with cancer."
He handed me the phone. I put it up to my ear, "Hello?" The voice on the other end: "Hey, this is Lance." It was that Lance - Lance Armstrong.
"Hey! How's it going?" I responded.
"I'm just messin' around with some bikes at my ranch in Austin," he said.
I didn't know what else to say (a rarity as you know). He is probably used to this.
"I hear your little boy has cancer. What's up? How can we help him, and and your family?"
He went through a list of detailed questions about Pablo's prognosis, what hospital he was being treated in, his treatment regimen, and who his doctors were.
"I've been to Childrens in LA a few times. That's a great hospital," he said. "You are in good hands."
He told me to seek out the head of Oncology at CHLA, Dr. Stu Siegel. "Find him and tell him you're my friend," he said. "And give your little boy a hug from me."
After we talked all about the treatment stuff, the only thing I could think to say was, well, the truth: "Hey, Lance, forget about all the bike stuff. I am such a fan of your foundation work and your dedication to helping other humans. My wife and I have decided to dedicate a part of our lives to this as well. I'm so honored to be speaking to you, and that you gave 10 minutes of your Saturday to me. Thanks."
With that, we said goodbye.
I wasn't sure what had just happened, except that I'd been hit by a jolt of inspiration and hope like I've never felt.
As Michael and I rode home, he said to me, "That's the thing about Lance Armstrong. He does that for people."
I could feel a clarity and power in my pedal strokes as we spun out the last 13 miles of our journey. I was buzzing from the current of Lance Hope I'd just been injected with. Michael, was buzzing with having put me on the phone with him. What a gift!
I couldn't wait to get home and give Pablo that hug. That hug.
I am still a bit dazed as I write this. Forgive me if I babbled.
Friday, May 30, 2008
Take one look at these photos and you know we're having a good night tonight....
"Toe" is one of Pablo's fave words. And just look at how happy he is to see his toes in Papa's Photo Booth program!
Clare Crespo and her hubby James Chinlund and their cute-as-a-button daughter Ruby did a drive-by this evening to drop off DVDs of her new kids' cooking show "Yummyfun Cooking." The DVDs are hot off the press. She ran them over so her little friend Pablo could laugh. SO SWEET!
By the way, Pablo calls it the "Clare Crespo Show." And that makes him laugh. Seriously, he giggles his butt off when he says it!
Oh, wait–here is a message from our little trooper himself (he is typing everything after the colon, and requested rainbow type treatment on the first line):
OK - Papa is taking the reins again....
We want you to know that we can FEEL your love at 1830. All your gifts, phone calls, emails, meals and meals and meals and offers of support could fill the Silver Lake that looms outside our windows.
NIght-night. Sweet dreams to you and yours. More post-age tomorrow.
Thursday, May 29, 2008
The past 24 hours has been tough.
I had every intention of going to my class last night–but as I was going to leave, I did one more check on Pablo and his fever had spiked... AGAIN.
Here's the basic protocol for an after hours fever: Call the on-call oncologist at the hospital. If there is a fever over 101 degrees, you need to get to the ED (Emergency Dept) and get checked out... They access the port, draw blood and start an antibiotic drip. The antibiotic is a 12-24 hour bacteria killer, and they like to follow up the next day with another dose. So, you call the urgent care department at the clinic in the morning and let them know about your evening, and they schedule you in for a follow-up.
In our case, on our Wednesday morning follow-up, we were not given an antibiotic because Pablo's fever had subsided and it had been deemed viral. They did the blood tests and all of his counts were good. They did a urine test (to make sure there was no infection in his kidneys) and everything came back negative.
By Wednesday night, Pablo's fever was back up - 103 degrees. I called the hospital and spoke with the on-call oncologist, Dr. Davidson. She was amazing and soothing, because at this point, I was a bit of a wreck...and being new to all of this, I was scared. She told us to prepare to come to the hospital, but give her 10 minutes to call our oncologist, Dr. Mascarenhas. She called back and told us we could stay at home and give Pablo Tylenol, but to call her if the fever continued. Of course, we didn't have Tylenol in the house and Motrin is not good for Pablo because it can affect his platelets (who knew?). So off the drugstore with my mom....
After Pablo's warm bath, we gave him the grape flavored goo which he resisted, but eventually swallowed down. He went to sleep in our bed and continued to cook. And, I mean COOK. My mom and I changed his drenched shirt three times over the course of a few hours. We woke
him to take another dose of Tylenol at 11:15 p.m. Pablo was so mad at me for waking him - he refused to take the medicine... and this is not like him - he crawled into my face and YELLED, "NOOOOO, I'm NOT taking it." Jeff and I stayed calm and cuddled him as much as he would
allow, and eventually he took the medicine. He went back to sleep on me and we slept soundly and warmly for the next four hours. Pablo woke up around 3:30 a.m., exactly four hours later and still with a fever... So one more dose, another wet pajama change and a trip to the potty and we were back in bed.... I got up with Grady and took him to school, arriving home as Pablo and Papa were waking. Pablo's fever did not go away, and we went back to the Urgent Care. They decided to give him the antibiotic again and do another round of labs. Again, blood levels look good...
As I write this, Pablo has a low fever. Dr. Mascarenhas is leaving town this evening for a few days, so he called to check in with us. He said that he feels that Pablo's fever is viral or that it could be caused by the chemo killing the tumor cells. I'm visualizing his strong boy lion body preying on and destroying those nasty cancer cells quickly and efficiently!
I called the on-call oncologist again and he wants us to keep an eye on Pablo's temp again this evening. If Pablo's fever doesn't break by tomorrow morning, we may be back at Urgent Care.... Today, I asked them if we were the first family to be there three days in a row and the nurse smiled and shook her head, "No, honey..."
Somehow, that put me at ease....
Sending so much love and gratitude to our army of supporters out there....
Wednesday, May 28, 2008
This whole experience has been a life changing and informing experience of my life and of many others as well. Although I will probably have a lot more of these adventures and downfalls to come, I have learned how to react, explain, and to comfort, in this case, Pablo. You would be surprised how brave this little boy has been, and is. This dilemma has been harder, I think, for us, the family, than it has been for him. Maybe it's a lesson or a warning for us, but I am living in the present moment and that's where I am staying and worrying about.
On Tuesday night I was sleeping on our couch upstairs (Nana was sleeping in my bedroom). I went to sleep around 11:45. I was awoken from a deep sleep at 12:45 a.m. by Pablo, who was saying, "NO NO, I am still sleeping–STOP!" I thought Pablo was just getting his medicine, and it was nothing to worry about. But then I heard Jeff (Papa) saying, "Get your shoes on Mommy and Pablo–quick." That is what drew me out of bed, to ask, "What's wrong and where are you going?" (I was still 3/4 asleep.) What i heard was, "high fever" and "hospital." The next thing I knew, that they were gone and I was standing there, still trying to process what they were saying as they left. (I stayed home with Nana.) I went back to sleep and was going in and out of sleep about 20 minutes at a time.
This is a family fave. We call it Yoga Toes. What else would you call it?
Jo Ann came to bed just before midnight. Pablo and I were down for the count, but I woke up when Jo Ann came in. I could feel the heat emanating from Pablo's body when I woke. Jo Ann felt him, and noticed the same. She grabbed the thermometer and popped in his sleeping mouth. He was 101 degrees.
They have drilled into our heads that fever is very serious, that we can't take a wait-and-see position, and even a small fever is a fever. We have been instructed to call the hospital and speak to on-duty oncologist in the event of even the slightest temp escalation.
Jo Ann was knee-deep with the doc in seconds. Still in bed, in the dark, I could tell something was up. I could hear her reciting our surname one letter at a time. This was our first fever call; in the back of my mind, I think I was hoping the doc needed Pablo's full name to fill out some paperwork, to document the call.
I was wrong.
Jo Ann hung up the phone and rushed into our room. "We have to get him to the ER right now," she said. "The oncologist is calling us in right now." (This is significant, cos the last thing we want to do is sit in the waiting room. It's nuts in there.)
We got dressed in seconds. Splitting duties, Jo Ann woke Pablo and got him upstairs. I ran up and grabbed the keys, the medical binder that J and her mom, Patricia had finished an hour before, and P's Lidocaine, the creme that numbs the skin on top of his port. Jo Ann applied it in the car on our five minute drive to CHLA.
We caught every green light down Silverlake Boulevard, and up Virgil Avenue. It was right out of a movie. Did I mention we got the CHLA in five minutes flat?!
So, here we are in some off-the-path room in the ER. It's cool, though, cos it's a private room with walls, as opposed to a "bay" separated from other patients by a curtain.
When we got here, a familiar face greeted us. It was the Stephanie Valenzuela, the nurse who worked with us the night of my birthday, when we first arrived here to have that bump looked at. That was before we officially became a Cancer Family. Seems like a year ago. In reality it was 11 days ago.
Stephanie is one of the many wonderful, gifted people we've come in contact with here at Childrens Hospital. She has a light in her eye; we feel that she truly cares about Pablo; it's more than a job for her.
It's funny how in life, we look for restaurateurs, craftsmen and contractors, shopkeepers, et al who have these same attributes. Entire magazines are devoted to finding the most "authentic" food and furniture joints. Nothing wrong with that.
But as we sit in Room T4, I'm thinking, the people who make up this hospital ought to have a mag dedicated to them. They make this place more than just a building, more than an institution. They give it heart, and they take away the mystery that can often put fear and that special type of loneliness into the patient and parents.
On a lighter note, Pablo's meds have been administered-900mg of Ceftrixone-and we're chillaxin for another 30 minutes, so they can be sure he's OK.
Jo Ann is cracking up, doubled over, laughing at my hair. Not surprising. Yesterday, Fred and our friend Bryan Erwin were debating whether I had a "Beethoven" or an "Amadeus."
Maybe you'll agree that my locks look insane. If you laugh, I'm OK with it. Here's a pic from Jo Ann's Blackberry:
Jo Ann is still cracking up. We can see Pablo's smile from behind his mask. His eyes are lit up. "I like the grey in your hair," Jo Ann says.
"I like the black," is Pablo responds, laughing hysterically.
It's 2:30am and we've gone from racing through green lights to laughing about Papa's kooky hair.
What a difference 90 minutes makes. Have a feeling we're gonna get used to this.
Tuesday, May 27, 2008
Monday, May 26, 2008
In fact, just hours before his diagnosis, Pablo was cruising around on a killer Specialized dirt bike with yellow lighning bolts on the seat and crank.
OK, we're off to bed. Sweet dreams. Buonanotte.
So here are some shots of Jo Ann and I getting our physical fitness in this morning, in preparation for tomorrow's chemo treatment. It will be our first time going into the oncology clinic for outpatient chemo treatment, so we have no idea what to expect during and after. Tuesday is going to be allllll about Pablo–his comfort, his heart, his need to snuggle... Not too much different than every other day, but you know what I mean.
BTW, before we get into the pix: we are having a great Memorial Day. Clare Crespo dropped off etouffee for dinner. How INSANE is that? Can't wait.
OK, the pix:
I normally ride my bike 250 miles a week, and Jo Ann does Bikram yoga every day. In order to get in the kinda miles I like to do, I have wake up early, to create more time in the day. Don't want to be away from my family unnecessarily.
This morning, I'm up early. In a moment, I'm off on two wheels to Angeles National Forest. If you know that area this will make sense; if you don't, now you know: gonna ride from our house in Silverlake to Sunland, climb all he way up Big Tujunga, to Angeles Forest Highway, to the Clear Creek Ranger station, and then drop down Angeles Crest in La Canada and home. Will snap some pics along the way for posting later.
Jo Ann and Dorrie LaMarr are going out to walk to Reservoir at 8:45am. Exercise, the doctors have stressed, is going to help us physically and mentally. It's SO hard to get out and do anything. But, tomorrow is treatment #2, so we need to get rockin today.
Last night, feeling a bit odd about going out for more than an hour, I asked Pablo if he'd be OK for me to go. He said yes, "As long as you brush your teeth. I never see you brush your teeth before you ride."
"But, Pablo," I responded. "You're asleep when i go out early in the morning."
"Oh yeah. But, Papa, just brush your teeth."
See you later.
Jo Ann found this captivating photo late last night.
Polly, Pablo and Mira O'Brien, Pablo's babysitter prior to Polly. Mira retired from munchkin duty to go to Yale grad school for painting. One of her paintings hangs in our TV room (I'll post pix later). She graduated this month, and we're hoping to see her sooooooon!
Sunday, May 25, 2008
A Discussion With Susan Baxter, Childhood Ed Specialist: Kidmunication, Art, And When To Take Shhhh As An Answer
In child development one of the ways we gain better insight into what a child understands is by examining the child's art for direction and understanding of what he or she is really thinking. When children are going through challenges of any kind their art can often guide you to understanding their perception of something. Their art often reveals their fears, their wishes and the most important things in their lives. I remember when we had a kitten die at birth; my son was 5 at the time. The next day, he drew a picture with the mother cat, the live kitten and the dead kitten in the picture. The mother cat and living kitten were walking along the ground catching a bug. The dead kitten was with them only was in the air with a halo and wings flying above the mother cat, catching a bug. This told me what he understood that the dead kitten was an angel but still did things like the living kitten and was part of the family. Another way we have used drawing is when 2 of my children were having nightmares around the age of 4 and 7. I asked them if they would like to show me what the monsters looked like by drawing me a picture of the scariest part of their nightmares and they both drew these hideous monsters. We took the pictures and told them we didn't want them in our dreams any more and threw the pictures into the fire. The nightmares stopped. The children felt powerful.
And so that is my little bit of whatever it is in support of Pablo's healing.
On Sunday, I asked her if she could talk with her other family and see if she could scale back her hours with them and come on with us full time until she leaves for Sacramento. She had the whole thing worked out in minutes.... Knowing that Pablo's treatment would be a long-term scenario, I started to feel the weight of Polly's departure and how it would affect Pablo's spirit (he asks for her every day). I asked her if there was any possiblity that she could push her move for one month. Again, within moments, she agreed to stay in Los Angeles and changed her life plans to accommodate us and be with Pablo. Geez–really...how blessed are we?
One funny anecdote about Polly is that her fave band is the same as Jeff's: The Smiths. Two of Jeff's former management clients play in Morrissey's band; a few months ago, when the Moz played the Palladium, we felt t e r r i b l e asking her to babysit so we could go to the show. A total Cinderella story. We were going out to the last night at the fair, and she was stuck home, working. But just like that old fairytale, it all worked out. We laced her with tix for the next night, and she got to reel around the fountain.
Specifics on Pablo's Treats OR The Chemo Barista, The White Blood Cell Drop and The Seven Nation Army
Left: The Chemo Barista.
Right: White Blood Cells, by The White Stripes. Read on to unlock the mystery.
Pablo's treatment and schedule: After we had our CT scan to see if there was any cancer anywhere else and it came back clean, we decided–with or oncologist, Dr. Leo Mascarenhas and a nod from Dr. Michael Jensen, the head of pediatric oncology at City of Hope (who is parent at Grady's school)–to start Pablo on chemotherapy treatment right away. Everyone agreed a biopsy was pointless. It would prolong the start of chemo. And the docs knew what he had, so there was no need to put his little body through an invasive surgery and recovery at that stage.
This is what I know about Wilm's Tumor: there are two kinds: a good one and a bad one. The good one is the most common. Wilm's Tumor can be found on only one kidney, or it can be bilateral - both kidneys.
Bilateral is rare, and THAT IS WHAT OUR PABLO HAS. Of all the bilateral Wilm's Tumors out there, it is extremely rare for bilateral tumors to be the bad ones. The docs kept stressing they didn't want to talk about Pablo as if he were a number (ie, getting into statistic talk). But some of the stats are welcome and helpful. One of the key metrics in the Wilm's game is that almost all of the bilateral tumors take to chemo like a champ. This is a simple goal post to hang onto when thinking about Pablo's condition. SO - we are moving forward as if his tumors are the good ones.
This is our best case scenario and we are asking everyone to hold that in their daily prayers, meditations and thoughts.
Our treatment plan:
• Chemo for six weeks. This Tuesday will be week two.
• CT scan on June 26 to see that the tumors are responding to the chemo.
• If that checks out, we will head into surgery to remove BOTH tumors and save as much of BOTH kidneys as possible.
• Then, we follow up with 12 more weeks of chemo.
The actual chemo cocktail: is a combination of Vincristine and Dactinomycin (Actinomycin-D).
Vincristine = V
Dactinomycin = A
EVERY WEEK: Pablo takes V
EVERY THIRD WEEK: Pablo takes V and A
This is the national (and possibly international?) protocol for treating Wilm's Tumors. Not a lot of trial-and-error or theorizing going on with this cocktail. As we have written before, Wilm's is one of the most heavily researched and most successfully treated forms of cancer around. Dr. Mascarenhas is confident in his cocktail. He is pullin shots like a mad-skilled barista, and we are confident he's got our order right. Also, compared to the drugs given for other kinds of cancer and to adults, this protocol is pretty tame. It is regarded as minimally invasive. It will not render any long-term effect on Pablo's physical body or his organs.
During the treatment cycle, the A drug will be very tough on Pablo's body. He will need to become a seven nation army to fend off its gnarly effect. A will wear down his white blood cells the way Jack White wears down his fingertips riffing and rawking. There's a chance we'll have to wear masks around the house, and visitors will be off limits. Our hearts are hoping that this won't be too hard on Pablo. On the logistical and mental front, we're prepared for all this simply by knowing it's a possibility.
Where will Pablo receive his treats? He will receive chemo as an outpatient at the CHLA Oncology Clinic EVERY Tuesday. So, we are planning for very quiet Tuesdays and Wednesdays over here in Silverlake!
Jeff has been asking me to write something all week and I have just been having such a hard time. I do not have that gift - writing... I've got the gift of gab... always have, even before I kissed the Blarney Stone. But, I do have the mommy's perspective on this past week––and I want to share that.
On Saturday May 17, Jeff and I did what we call the "divide and conquer." Jeff went on his big 75 mile Saturday morning ride and I hung out with the kids.... We hooked up in Pasadena, where Jeff and our friend Tony Hoffer grabbed Pablo; Grady and I headed to Sierra Madre to WORK. That's right... Saturday was Grady's big music video shoot for his 8th grade project (he finished the edit two nights ago–we'll be premiering the vid in a few days here on the Pablog).
Grady chose The History of Music Videos and MTV for his written report and chose to direct a music video for his artistic element. Early in the school year, he asked our good friend, Scott Henriksen (cinematographer extraordinaire), to be his mentor...and Saturday was the day for Grady to head out with his A-List DP to shoot his friends' band, The Conscripts (temporary name). I can't even get into how much fun we had shooting. It was awesome... Grady and Scott were a great team!
After the shoot, we came home for a quick change before heading out to Jeff's birthday dinner at Malo. As soon as we walked in, Jeff asked me to look at Pablo's tummy. My reaction was instant. I know Dr. Fleiss' number by heart, so I grabbed the phone and paged him. Then, I called our dear friend Brie Grousbeck – she is the wife of Jeff's business partner, Peter Walker, and is also a DOCTOR! She had just given birth days earlier to their gorgeous son, Lennon. I started describing what I was seeing on Pablo's belly. She spoke to me in her usual amazing, calm way. Whatever she said, there was something in her voice that told me to get in front of a doctor right away... Fleiss' office beeps in. It's Miriam, Fleiss' nurse-practitioner. Within five seconds she's telling me to hang up and stay by the phone for Dr. Fleiss. Seconds pass and Dr. Fleiss calls. It's quick and I'm told to meet him at his back door in 15 minutes....
Jeff takes Pablo to the doctor's office. I took Grady to Malo, where 35 people are meeting us for dinner. The rest of the evening is a blurry-eyed, nauseous haze. I can't eat. I can't think. I can't talk. I leave with Pablo and get to Childrens ER. Now, if any of you have ever been to the ER at Childrens on the weekend, you know–it's overflowing with kids and their families needing medical care and you can expect to be WAITING all night. Fleiss had called us in and we were whisked through all of the steps - and in an ER room in 15 minutes.
This was making me crazy - because I knew that it could only mean one thing - something SERIOUS was going on in my baby's body. Jeff got there within minutes and remained calm, cool, collected. Pablo was cuddling and sleeping when he wasn't being poked and prodded and I was a mess. No one would give a diagnosis without a scan, but the word tumor was put out there and the word cancer was put out there. Once we had the CT scan and the Wilms' Tumor diagnosis was given, Jeff had his breakdown and I became Mama Bear. "This is my baby and he will be OK. We just need to get information and get a game plan!"
The rest of the hospital stay is outlined in Jeff's posts and the only thing that I can add is how completely blown away we have been by the outpouring of love, thoughts, prayers, wishes, physical HELP, etc....
Saturday, May 24, 2008
Under normal circumstances, we'd be just as excited to let the 'rents take over on kiddie duty for the night. Tonight was not so easy. I had a hard time agreeing to it. Our snuggly nights in bed with Pablo have become ever more important to me, and to Jo Ann. More than that, we just want to be with him all. the. time. I went for a bike ride today and didn't stop regretting leaving him.
Anyway.... soon, after the initial intensity and focus fades away, and we get into the swing of things, we'll be grateful to have had this night off. And we'll be glad that we green lit Pablo's away night with Harry and Patricia. It's just...so...different now.
Everyone keeps reminding us we're running a marathon, not a sprint. We just don't want this experience to turn into some 'Loneliness of the Long Distance Runner' stuff. All the help that all YOU are giving us right now is helping to pace us as we get into this phase of life. What we're working on today and tomorrow is sorting out the house, particularly to make the areas Pablo will be in as comfy and clean as possible. Still, it's strange and odd and more than anything I keep thinking that any minute I'm going to get a glass of cold water in the face and somebody is going to wake me from the dream. I often don't know how I feel until I write. So this blog is helping to keep me sane and decompressed.
On 'Singles': Nobody has mentioned it, but kickin' it old skool is strangely comforting to all of us. I know it. This movie is a walk down memory lane for all of us. For a start, my bro Dean and I had hair like Eddie Vedder in the '90s. I was a music journalist back then and interviewed Ed twice before the debut Pearl Jam album came out. In fact, the first time I interviewed him, I walked into a sound check b-ball game with: Ed and Jeff from PJ, Billy and James from Smashing Pumpkins and Flea and Anthony from Red Hot Chili Peppers. That was ill. OK, back to the moooveee talk: Cameron Crowe is so cool; he nailed it in this pic. Dillon's character carries the angsted out ego blubber of so many singers. The soundtrack is flawless. Some of the best songs ever by Pearl Jam and Smashing Pumpkins. The Paul Westerberg score and theme song still gets me. The script is a highly stylized version of how things really were back then. Seattle was a lot like Milwaukee. Lots of bands, lots of beer, lots of apartment building life. And lots of old time analog courtship. Picking up chicks before cell phones, text, voicemail, email, and–ahem–blogs. Those were the days. People actually had to tawlk.
And take it from me - none of the actors look any older nearly 20 years on. In fact, Jeremy Piven (he plays the drug store check out guy–remember?) actually has more hair now than in this flick. Matt Dillon has clearly made a pact with the devil. Oh, and now we know the guy who was viciously making out with the chick in the cafe: Paul Giamatti.
OK, with that Giamatti makeout image in your head, I have just two more words for you:
When Eli heard Pablo was sick, he immediately asked his mommy to bring his Pirate Scooby to him. Beyond sweet.
we know from my brother scott's treatment, there are good days and bad days, great weeks and great runs. there are also days when plans have to be scrapped at the last minute. plans for simple things like going to the park, or for a coffee. plans for a summer holiday.
one of the countless gifts scott gave us was the experience, strength and hope. now that we are in our new reality as a cancer family, we're kind of know how to roll. one of the many reasons i am so dedicated to this blog is for this very reason: to s h a r e our experience with all of you. If our experience could ever help you, or someone you know, well, here it is.
as i write this, pablo is snuggling with fred on the couch. they are sitting next to me watching 'pirates of the carribean 3.' pablo is stoked. he loves fred: loves rubbing on his bald head, loves asking him a million questions about the movie and loves just b e i n g with him. i just reaized this - it might have something to do with the fact that, without his gnomie beard, fred looks like another hero of children the world over: author and poet laureate shel silverstein!!!!
of all the people pablo gets shy with, fred is not one of them. i remember meeting fred the first day of high school, in september 1986. i had that same easy feeling about him: "this dude is my friend." i have never had a strong urge to rub his head or snuggle with him, but after 22 years of friendship, i know i could give the dome a good rub if i had to!
We took a few g'mornin' pics, each one telling a different story from our little trooper:
"OK, one picture? I can be happy about that! Maybe I'll eat some pancakes again for brekkie...."
Friday, May 23, 2008
It's not only easy to remember, but ties together two powerful themes: Pablo and Love. How cool is it that the two words go together so easily?
Please bookmark it in your browser, and PASS IT AROUND!
When you get to this page, all you have to do is click the type that says CLICK HERE FOR PABLO'S BLOG, and you'll land on the existing Pablog.
We're doing this so we can introduce something else new to our fight and light campaign: PABLOVE bracelets!!!! We thought this would be a cool way to engage the kids and adults - wearing the bracelet makes us all feel like we are doing something. At least this is how I felt wearing my Livestrong bracelet when my brother was sick. It felt to me that wearing it was a statement of intention, a marker in the sand, a statement of unity and consciousness. Whatever and however one feels, it sure doesn't hurt. Especially with the amount of kiddies in our midst.
You will see one when you go to the page - they are beautiful!!! And they will be in our hands in 14 days!!!!!
They happen to look a lot like the LIVESTRONG bracelet, because yellow happens to be Pablo's fave color. There will be a mix of sizes, including plenty of kids' sizes.
Jo Ann is coming up with a specific charity centered around pediatric cancer or Wilm's Tumor treatment and research that she will be asking people to donate to as the bracelets make their way into the world. We'll get that info out when the gear arrives.
Jo Ann and Pablo are in the tub. Our nights are getting later and later, now that P has started napping for two or three hours in the late afternoon. And today, he went nuts on the new play structure for 45 minutes after the nap. We know that there might be some tougher days ahead, so we are filled with gratitude for the ease of the moment.
OK, I'm off to LAX to pick up our friend Fred. He's coming in from Milwaukee. We've been friends since the first day of high school. I love him, we love him, and Pablo loves him. In fact, he is entranced by Fred! By Fred's own admission, he looks a lot like a gnome. First of all, he has a gnomic beard going on. And, like most all gnomes, he is the gentlest soul I've ever met. Pics tomorrow.