Monday, March 30, 2009
Saturday, March 28, 2009
I wrote this post Saturday morning and forgot to upload it.... So, here you go....
I went into P's room this morning to help him choose clothes and get dressed. I've done this for nearly six years. This time something was different. Pablo chose his jeans, then his shirt. Without counsel, he went to his top drawer, pulled it open, and began holding up a succession of underwear. One after another, he'd hold up a pair, look at it for a second, and place the striped or polka-dotted garment in a 'B' pile—until he found the pair he was looking for. I sat on his bed watching in amazement. The grin on my face felt as good as the simplicity of the moment. The thought running through my head was something like, 'My son is his own person, on his own path, and is having his own experience in life, and all I can do is sit on his bed and observe.' I've known this 'own path' thing for a long time. Still, it's been tough to accept that P doesn't want or need my help all the time, in every situation anymore.
When the selection process was complete, Pablo walked over to me. But only because he'd laid his clothes out on the bed next to me. He pulled his undies up. Then chose a specific pair of blue jeans from the middle of a pile of seemingly identical jeans. 'These are my new ones that Mommy got me,' he proclaimed. He pulled the jeans on, after being sure the zipper was up and the button was closed. Pablo has a technique where he just yanks his closed pants over his butt until the mission is accomplished. So cute.
I could not stand the observer's role any longer. I grabbed his 'Amazing Spiderman' tee and got it into position over his head, as I have since he was born. His eyes popped out, his arms went up above his head, and he stepped back. 'You don't have to help me anymore Papa.' All I could say was 'Oh—OK sweetie. Here you go,' as I handed him the grey tee.
Nothing has defined the past year of our lives more than interdependence. An intricate, highly detailed fabric of us needing help and receiving help from countless friends in countless ways. In rapid succession. We expect Grady, who turns 15 in 18 days, to be busting out of the nest and fighting for his independence. But Pablo, like, not needing my help to put on his shirt—that knocked the breath out of me.
There is a part of me that wants Pablo to need me in the same way he did one year ago. There is a part of me that wants the physical 5.8-year-old Pablo and the developmental 4.8-year-old Pablo. I don't spend much time wanting anything these days. But yesterday it was clear that I wanted Pablo to want his Papa in a way that he no longer needs. The year of front line triage has been so acute and intense. It made the simple joy of helping P get dressed not register. The past year has been about cresting the big waves on the Richter Scale. To a large degree, we were desensitized to the little ones, such as dressing Pablo. Didn't even feel them. We lost of year of gradual weaning off of that OG parental dependency. Nothing in the past year has been gradual. So, yeah, I was a little hurt and a little crestfallen that P waved off my presumptuous offer of assistance.
As I typed that last sentence, Pablo scurried into the play room and snuggled up under my right arm. In an instant, all is right in our world.
Grady, Jo Ann and I are getting ready to head out. The memorial for our friend Thomas from CHLA is this morning in Camarillo. We're elated that G wants to go.
Tuesday, March 24, 2009
And so happy to be here. This morning, Pablo found himself unhooked around 6:30a and came over to my sleeping spot, crawled in and snuggled up for another three hours of sleeping. We both woke when Meghan, our nurse this morning, came in with his last dose of IV Zofran. Meghan has been our nurse a few times - she's awesome - particularly good at the de-accessing of Pablo's line from his port. Last night we had sweet Danica. We do love all of our nurses, but over the past year - Danica has become so close to us. We hung out in the hall last night and recapped our first night there way back in May 08. Danica was our nurse that night, but because we were a "new diagnosis" she was only coming in every once in a while to check vitals. She remembers that P and I snuggled up in the bed, that there was a lot of crying and shell shocked looks on our faces and that Jeff stayed up all night trying to find out something about this thing we'd never heard of before: Wilms' Tumor.
I guess they bring in a chemo cake and sing a little song on the last day, but I asked Danica last night not to do that... I just didn't want to make a big deal out of this - we did the very low key cupcake celebration, which was really just a way for us to show our appreciation to the remarkable, loving nurses of 4W and to mark the night. A big thing today would have felt a bit weird - especially since we anticipate being back there next week with fever and neutropenia. So, instead of the cake and the song - we had heartfelt hugs and tears. It was really something. I love that staff!
Our friend, Adam, donated platelets this morning and came up to see us. He ended up staying until we were discharged to help us with all of our belongings. It was sweet to have him there. Jeff had swung by earlier on his way to a meeting - getting to give P a big hug for his big discharge today. We rolled out of there and decided that The Mustard Seed was the perfect place for a celebratory late breakfast. Pablo ordered a ton of food, but once it got there, he barely nibbled on it. He seemed a little bit tired and anxious to get home. Knowing that the weeks of house arrest are upon us, I offered to wear a mask with P and take him to the train at Griffith Park. He declined and said, "Maybe later with Polly." Once we got home, he decided that this is exactly where he wants to be and decided to pass on the train ride altogether.
It's been quite a road. A road that we are nowhere near the end of... just past a certain mile marker... the end of chemo. This is huge and fantastic and feels so amazing and scary and a bunch of other things, but JOY and HOPE fill our hearts. Now, Pablo's counts bottom out earlier and take longer to recover than they have with any of the past treatments. He is at a high risk for infection and we have to keep him in and everything around him as clean and germ free as possible. We do not want another infection!
Continued thoughts prayers and meditations for Pablo and all of our CHLA angels and warriors, please.
Monday, March 23, 2009
Well, here we are. It's the last night of chemo. Can you believe it? Pablo will be six in June, and he's on the last night of something. Most people have to wait until eighth grade or senior year to finish something so monumental. So life altering. But our little chemohero has crested the biggest mountain imaginable in under six years. He has done it with courage, cuteness, humor + nonstop action. If we ever thought all these high end drugs were going to slow him down or bum him out, we were wrong!
Jo Ann, being the thoughtful + sweet woman that she is, ordered a dozen deluxe + yumalicious cupcakes from Alcove. Josh from Dangerbird picked them up, and Hrishi and I brought them to CHLA when we went up for dinner. Alison Amon delivered dinner. It rocked.
We sat in the conference room, as we have a hundred days before, and we ate while we caught up on the day, and while Pablo climbed all over us and the table, occasionally eating a bite of chicken. Hrishi is vegetarian, so he ate the off-the-hook risotto. It was fitting that Hrishi accepted my invite to leave the office and join us at CHLA for our last supper of the chemo regime-o. To me, we could not have had dinner alone tonight. Symbolically, we needed a friend to join us. We have not walked this path alone. We have walked this path with great help from a great many friends. There aren't enough Thank You cards in the world to cover all the friends we have, who have helped us in every possible way. Hrishi represents all our friends quite well. If you know him, I know you'll agree. If you don't, trust me: Hrishi is a brother to us.
Jo Ann's cupcake idea worked perfectly. We were able to celebrate Pablo's final dose of chemo—EVER!—at around 7:15 p.m., just as the day and night nurses were changing shifts. Pablo had planned to make some remarks, but as I held him in my arms behind the nurse's station, he looked at me, grinned and said, 'You!' So I did.
I had no choice but to paraphrase the message that P had rehearsed for the cupcaking (that's what I was doing in the above pic). It covered these areas: Pablo's final night of chemo, our gratitude for ALL of the nurses, and our love for them in the form of cupcakes. The nurses were all smiles and very quickly brought out the knives and bowls for some sugary stimulation.
Polly's at CHLA now. Jo Ann and I are home—we have a show to go to at Spaceland tonight. Then we'll be back at CHLA to breathe in the air of the final night.
Sunday, March 22, 2009
When Tony dropped me off this morning, I took a nap, and came straight to CHLA to relieve Jo Ann. She's been on duty for two days without leaving this building. After two days of nonstop Austin action, my best contribution to playful Pablo's Sunday is to lay in his bed and allow him to jump on me, punch me, and snuggle with me while he watches a movie and we have quasi-convos between disco naps. We've been watching a 'Sponge Bob Square Pants' DVD for - seriously - like four hours. The dudes who produce that show are clearly insightful and benevolent people. This is the longest horizontal integration I've had in four days.
As I write this, Pablo is literally bouncing around the room, hopping from bed to chair to floor, singing 'Only two more days of chemo! Only two more days of cheeeeeemo!'
That song is an immediate #1 hit. Request it at your local radio station or roller rink.
Saturday, March 21, 2009
When we woke up we found out that our day nurse today was Jeff. We love Jeff. He is so kind and caring - so very attentive and nurturing. Pablo went to the playroom at opening time - 9:30a and jumped into a game of Bingo. I went next door to Starbucks and got us our morning beverages. When Pablo came back to our room, about an hour later, he had a bag of loot. Apparently he won five games of Bingo and got to chose some fun objects from the winner's bin. His favorite being his groucho marx glasses and eyebrows as seen here.
After a short nap, Pablo decided that he wanted to go visit someone... Zoey! We went over to 4E and found that Zoey had moved to the big corner room. We went in and, seriously, a party ensued. Zoey was in a great mood - all smiles. Zoey's roommate has a sibling Pablo's age and they had met earlier in the playroom - so they had a great time. Then Heather showed up with three of Zoey's siblings... it was fun.
Francine brought us dinner tonight, so we left for the conference room and more playing ensued. Pablo set up some games to play with whatever he could find - and kept himself and us entertained until 9pm.
Danica is our nurse tonight - how lucky are we... all of our favorites! The chemo is flowing and P is sleeping and I'm on my way.
Jeff comes home tomorrow - we miss him like crazy. Grady is with Jimmy and we miss him like crazy, too. We get to see them both tomorrow.
Friday, March 20, 2009
We got home and got the call from Liza that platelets were at 84,000... That's what we wanted to hear! We hung out, played and casually packed waiting for the word that our bed was ready. Pablo decided to take a nap and I called to check in with the charge nurse - she said to come on in - they were ready for us... now, we had to wait a bit, as P was out.
We got here around 4:30p and saw Pablo's friend, Jaden on her way out. She has been here for over 4 weeks, so we were really excited to see her on her way home (even if it's just for a few days... she's back for her next round of chemo on Tuesday). When we got up to 4W we discovered that we were assigned to 429B. This is the exact spot where Pablo did most of his surgical recovery and it is where he received the first round of high dose chemo under his current protocol. I was trying to negotiate a room that would provide a better sleeping situation for me, then it just dawned on me... this is where we are supposed to be. Pablo's last chemo here brings us full circle. The charge nurse tonight is Shelly and she was actually the one that administered that first dose back in August. We both remember the night and had a sweet reminiscence about it. Then Dr. Mary Austin came in to see us.
Ok, tears are flowing now... Dr. Austin was with us in the emergency room on the evening of May 17 and the early morning hours of May 18, 2008. She was the surgical fellow on call that gave us Pablo's diagnosis post CT scan. She scrubbed in for every one of Pablo's surgeries as Dr. Stein's co-pilot and we adore her. She came in because she heard that P was in here for his last chemo... it's really something here, I just don't know how to describe it.
Pablo is in the best of moods. He is ready, willing and excited about getting through the next four nights and then on with the rest of his life. Today he told me that after this chemo he gets to go back to school. What a patient, courageous, soulful boy.
Please keep angels Luke and Thomas in your hearts, as well as our fellow CHLA warriors: Zoey, Jaden, Ricca, Lauren, Hope...
With loads of gratitude and love,
“Most Sacred Heart of Jesus, I place my trust in Thee.”
Our beloved Thomas passed away today, the Feast Day of St. Joseph, at 4:33 p.m.. We were all by his side as he peacefully took his last breath. Thomas is our valiant hero; he fought with Hope in his heart until the very end.
My heart hurts. I don't understand. Last night, Jeff and I sat silently in our bed and wept. We each had our own separate experience receiving this heartbreaking news. The thing that makes any of this even slightly bearable is Thomas. As my friend Julie put it: "Thomas is definitely the angel sent to earth to be a messenger." As I've mentioned before, Thomas' unrelenting faith has altered me for good. For the better. I still don't understand, but will walk with hope in my heart forever.
And with my heart flooding with hope, we begin Pablo's final round of chemo. We are due to check in this afternoon and get going with the chemo sometime in the night. We tend to start late and it has always worked out well for Pablo. Tonight he will receive three chemo drugs: carboplatin, etoposide and cytoxan. The next three nights are the etoposide and cytoxan.
Keeping Thomas and all childhood cancer families in my heart, prayers and meditations - please do the same!
Thursday, March 19, 2009
By the way, we decided to give Pablo $5. As Jo Ann opened her wallet, she said, 'Most kids only get $1, but we're giving him a five!' It was the easiest convo about money any married couple has ever had. If she'd have pulled out a $20 bill I would have agreed to that as well....
A few minutes later, I got a call at the office. It was Pablo. I picked up the line and heard this voice on the other end scream 'My tooth fell out Papa!' I made them stop in their tracks and come to the office so I could see this wonderful toothless boy. Amazing!
By the way: earlier this morning, Jo Ann took P to CHLA for a blood draw. His platelets are at 71,000. Dr M told them to come back in the morning, and he'll check him in for his FINAL ROUND OF CHEMO!!!!!!!
I will be on a plane to Austin at 6:30 a.m. Going there for the South By Southwest music festival. I wish I was going to be here to check in for this last run. But, then, it's symbolic that I'm taking my FIRST business trip since Pablo's diagnosis as he and Jo Ann check in at CHLA for the final run. That will be some fuel in my tank, knowing that Jo Ann and I are dividing our duties and kickin ass.
Wednesday, March 18, 2009
The second is blurry because he gets annoyed at me snapping his photo all the time and I was trying to be sly between his backward glances. He found a great walking stick and was leaving me in his dust. I kind of like the photo though. It looks like a painting.
On the way home I remarked on what a great day we had. He agreed, sighing "We had adventures..."
Tuesday, March 17, 2009
Polly sent me an email a few minutes ago. It fit so well with Adam's pic of P from earlier this afternoon, I had to post it
Her email said: Has anyone told you that when P pretends to be a dog the name he chose for himself is Little Jackie Mischief? If not, there's your daily cute P fact.
When they got here, I handed Jo Ann her St Patrick's Day present: a CD bootleg of the U2 show she attended in 1982 on the riverboat President. Ben in our office has been working on downloading the music for a while - it was from some janky file sharing site, which we'd NEVER use, except for this sort of a special occasion. When I came in, Ben was assembling a cool package for the CD - a proper cover and everything. Total coincidence that this all came together on St Pat's Day [insert Irish cliche here], and that's why I wanted to get her to the office today.
My special reason for Pablo to come to office was even simpler: to walk him next door to Town and Country Cafe for a giant ho-made Hostess Cupcake-style cupcake. As you can see in the pic, he loved it, and made good use of the Dangerbird conference room while doing so.
Monday, March 16, 2009
This time honored time of wonder has its cautionary side for our family. Last night, when Jo Ann was disconnecting Pablo's antibiotic pump from his port, she noticed a small pool of blood on his pillow. She and Grady and I were up in P's mouth with a Maglite searching for the origin of the blood. We didn't want to assume it was his tooth. In fact, there was no blood on the tooth. It was a serious scene, prying open the mouth of our sleeping child. He didn't wake up - he's so used to people poking and prodding him during the night that it doesn't phase him.
We're back at CHLA to meet with Dr M. We assume this is a general meeting. We didn't know about it until this morning. We do know that P's blood counts are not high enough today to start that final four day run of chemo. But Jo Ann swears we'll be in the zone by the end of the week.
Sunday, March 15, 2009
The major difference is that we didn't lounge around and have the kind of fun that sane people yearn for, like Jo Ann and her friends did. Instead, Piero, Jeff and I woke at 6 a.m., ate like we were going to the chair, pinned numbers on our jerseys and set off like bats out of hell into the cold morning air of the Santa Ynez Valley in an attempt to conquer the course in a remarkable time. It was epic. That's the cliche that cyclists of all levels use when describing rides that didn't shatter them. So, it was epic, and made our bodies hurt. But not too badly. I finished 6,000 climbing in 102.9 miles by expending just 6,658 calories in 5 hours 29 minutes. Just nine minutes slower than last time I did the event, and that was in November of '07—at the end of an incredible season of races and events and thousands of miles of training. This being March, I'm at the start of that cycle. Solvang '09 was meant to lay out the harsh facts of who I am as a cyclist, and where I am in my fitness.
Why either of those things matters is cos in 10 weeks I will be on the start line of a much different event: the California State Time Trial Championships. Why would I subject myself to such physical and psychological torture? First, I truly, actually do love to suffer and the time trial is my fave way of doing so, more than any other event on the bike. Second, I figure anything—ANYTHING—is easy now that we have repeatedly walked on the mixture of hot coals+broken bottles for the past 10 months. The French call the time trial 'the race of truth,' because each rider goes alone, and is riding against the clock without help from any other riders. In regular pack racing, those in the front of the peloton block the wind for others, lots of strategies play out, and so on.
This year, the race of truth has untold levels of meaning for me. I see now that the past two years of early morning training with Coach Rick at the Rose Bowl, and all the kooky+cold early morning drives to the monthly TT race in Piru, CA were leading up to something. The pursuit of me against the clock was etching into my soul what it would be like to walk over hot coals+broken bottles. And now that Jo Ann, Grady, Pablo, Polly and I—and all of you—have done this for nearly a f**king year, bringing it full circle back to the bike seems like a dream. Yesterday, I emailed Jo Ann from the start line and told her I was going to pedal like hell for her and G and P. I did it. And it felt good. Ramming my pedals and pumping my lungs is a freedom and a luxury I appreciate. Making a bike move at speeds of 35 or 40 m.p.h. makes me feel like I'm actually doing something—the exact opposite of countless moments over the past 10 months, when Jo Ann and I have felt pinned and mounted.
Jo Ann and I just got Pablo to bed, and we're off to have a date upstairs—watching the premiere of the new NBC show 'Kings.' But what I do have to say is simple: I love Pablo. I love Grady. I've had moments with each of them this week—slivers of time, conversations, experiences—that are the kinds of things life builds up to. I'm grateful that I was paying attention when the moments arrived.
A great moment with Grady happened on Thursday night. We were both up late working on our laptops—he on homework, me on business stuff. He came into the den and asked if he could run his Geography report. It was a PowerPoint presentation on the three members of Green Day. He had an elaborate show of visuals, stats and personal facts on each guy rolling on the computer as he eloquently and naturally spoke about them. He spoke as if he was talking about three of his friends. Not a surprise—they've been his fave band since he was six or seven. I was so damn proud of Grady as he read. And I felt like a grown up—a parent no less—when he asked if he could run the show for me.
This evening, Grady asked me to help him change out the rear tire and tube on his dirt bike. I was happy to help him. It was fun. We did it together—something I really enjoyed. After we got his bike together, we raced up the street a couple of times. I was on my feather-light carbon fiber TT bike, wearing street shoes on pedals meant for special cycling shoes with cleats. He was on his army tank heavy dirt bike, wearing tennis shoes on big fat platform pedals. Guess who won both races? Grady! Looks like I have a lot more training to do. And, as always, Grady showed his natural athletic ability—something he's inherited from his dad, Jimmy, who's also a major all-rounder in every sport he does. Now if I could only get G on a road bike....
My moments with Pablo were many. Some snapshots: he counted to 500 by 50s this afternoon.... He explained the premise of the tooth under pillow / Tooth Fairy / money exchange; when I responded, 'I know,' he assured me that I didn't.... He recalled that on the night of my last bday party, when he and Jo Ann went to the ER at CHLA because 'I had bumps in my tummy and I wasn't feeling well,' I brought only Jo Ann a bday cupcake (for the record: I did so cos I thought he'd be sleeping!).... I told him I was meeting with Coach Rick in the morning (he hasn't seen Rick since July); his response: 'Oh! I remember him—he brought me the book about the Chihuahua on the bike!' He informed me that the movie 'Robots' has better music that 'The Black Hole' (he got this cos earlier today I told Peter how great the music was in 'The Black Hole.').... I can't think of more, but there are so many other little capsules of wonder with this little dude....
Saturday, March 14, 2009
My heart is heavy. I have been crying for three days. On Wednesday, my friend, Tish, wrote this on her son's caringbridge site:
God Answers Prayers. He not only answered our every prayer these past 8 months, but He never failed at guiding us with each and every bump and roadblock along the way. God's plan for Thomas and our family is to take him HOME to heaven.
I met Tish at baby Luke's memorial and we started crossing paths the very next day in the clinic. What a blessing for me. I was able to not only meet a remarkable mother, I mean truly remarkable, but I was also able to meet one of the most amazing young boys, her son, Thomas. In the short time that we have known each other, I have to admit, I have been greatly influenced by the strength and faith of precious Thomas.
It's an unique relationship, the CHLA cancer family. We become invested instantly in the progress of each other's children. Like Jeff has written before, another child's progress becomes synonymous with Pablo's progress, another family's hope becomes synonymous with our own. We had actually not become part of that "family" in the beginning of Pablo's treatment because we were not in patient for our first 12 weeks of chemo. Then, when we were there for 31 days last August for Pablo's multiple surgeries, we never really left our room. It wasn't until the new regimen was put into place for Pablo, that we started becoming all too familiar with the rooms and halls of the Day Hospital and the 4th Floor. That is where the family is formed. One parent introduces you to another, or you start to see the same child a few visits in a row, or you end up sharing a room up on 4W. Whatever the introduction, we are brought together and we belong together. We are mothers, fathers, advocates, soldiers and most importantly, friends.
Again, please continue to keep sweet Thomas and the Hearne family in your prayers.
As we close in on Pablo's final chemo treatment, I find that I am anxious and emotional. I have been praying for months for a sign that we should stop treatment as originally written by Dr. M, and I find that instead of one distinct tip-off, I have received many. The most recent being that Pablo's counts mysteriously dropped this week and it is a long shot that they will be recovered by Monday to start chemo. This is now, officially, our longest delay from the Dox/Cytoxan/Vincristine round. There will not be another one, so it's not too concerning, but definitely an indication of the toll that P's little body is taking due to all of this high dose chemo. Dr. M said again, actually, that if we told him that we wanted to stop chemo now that he wouldn't put up a fight. When I asked him if he was telling us that he recommends that we stop, he said, "No." His point being, that Pablo will have had enough.
My mom and our niece are coming for a visit this Monday - we are excited to see them!
And a head's up: Carrie will be organizing another healing circle sometime in the next few weeks - please stay tuned for details.
Wednesday, March 11, 2009
Tuesday, March 10, 2009
As Jeff and I mentioned in earlier posts, the GFR is a radioactive kidney function test. The result of this test is put into the dosing formula for P and determines the amount of chemo he will receive on his next round. Pablo is meant to be super hydrated and stay hydrated throughout the testing. I have to admit, the hydration thing is not always that easy... it's hard to make a little one drink and drink and drink. I felt like we were good on hydration, but Pablo's results showed a slight decline in kidney function from his last test. He is still in the normal range (although the low end) and his chemo dosing will not be affected. Dr. M didn't seem too concerned and as usual, we will keep a close eye on him and continue to check his blood levels and his urine chemistry for any indication that there is trouble. The lower number can do with a few factors, one of which is the amount of chemo that Pablo has had to date. As we continue on this aggressive chemo schedule, Pablo's counts drop faster and take longer to recover.
This is normal, but something that needs to be watched closely. Dr. M did an abdominal exam and feels like there is no need to do immediate scans and advises to stay on schedule. Pablo's next scans, which will be a CT of his chest and an MRI of his abdomen and pelvis are scheduled for mid-April. These will serve as his official "end of treatment" scans. That's right! We have decided after much much much deliberation to end Pablo's chemo with this next round. Jeff and I have gone over it thousands (literally) of times in our own minds, with each other, with Dr. M, with other Wilms' parents, with other parents from our floor and in prayer. We feel great about our decision to follow Dr. M's original treatment plan for Pablo and look forward to that end of the tunnel light we have heard about so much!
We also received Pablo's echo results yesterday. We were incredibly pleased and relieved to find out that Pablo's heart function is EXCELLENT. This is Pablo's official "end of DOX" echo. This does not clear Pablo for life, but we know now that there were no immediate side effects from the Dox. His heart is meant to be under close watch for the rest of his life, however and he will be restricted in certain areas due to this... like weight lifting (hmm, this could be one of those blessings we keep hearing about).
So, here's where we are today... Pablo's counts are on the rise. White blood cells and ANC are coming up nicely, but his platelets are taking longer to recover. We are hoping for admission next Monday, if not sooner, and we will be in for four nights of chemo.
In closing, I have a request. Our friend from 4W, Thomas, is in need of prayers today. As I write this, he is in surgery. We are praying and hoping for the best possible outcome. Thomas and his mother, Tish have been an enormous inspiration to me and I ask all of you to hold them in your hearts today.
Monday, March 9, 2009
This process will take us til noon. We have to come back for more blood draws in an hour, then two hours later. Jo Ann and Pablo are gonna come to the office during the two hour gap to hang with me. Pablo's gonna watch a Scooby-Doo on iTunes cos he was heavily bummed when he had to walk out on his episode that was playin in the GFR lab.
We'll have news of the GFR test result later on. There aren't many stats we can chase with the type of treatment Pablo's doing so the kidney function number is exciting to us. Jo Ann and I are goal-oriented peeps and so is P.
At 2 p.m. Dr M is gonna do an exam of P's body. Over the weekend, he noted some pain in the center of his tummy and on his right side. He also had a burning sensation whilst deucing it up. Dr M is the man with the plan. We've learned not to freak until he takes a peek.
I'm heading back to the office. Van Halen cranked to 11 in the car. Haven't listened to music in two weeks. Must be a sign. This could be better than last if I let it.
Sunday, March 8, 2009
Lance with Nike CEO Mark Parker and Shepard Fairey. That's Shepard's stunning 'Defiance Courage Action' mural in the background. He is giving us the much-smaller version off the side of his building in Echo Park after it runs its course. So excited. We're going to hang it in the back yard at Dangerbird. We have the perfect spot for it.
At 11 a.m., Polly came over so Jo Ann could go to the Eulogies video shoot downtown. Eulogies is my partner Peter's band—they're about to leave for an unending tour, so this is Jo Ann is our video commissioner at Dangerbird, so while she had plenty of work at home, she had to punch the clock like Fred Flintstone, and check in on the shoot. Our friend Scott Henriksen directed (Helen McCusker's husband—many of you know her from your food and blood coordination), and Grady was the Director's assistant. I wasn't able to attend, but Peter, Jo Ann and Adam Harrison from DB all told me that G did a top-notch job as Scott's assistant/slate guy.
After my ride, I wolfed down my post-ride meal, showered, and headed to the Montalban Theater in Hollywood with Polly and Pablo. We went there for lights, cameras and a bit of different kinda action. Last week, Nike and Livestrong invited us to be filmed for a Livestrong TV / web commercial. Instead of showing Lance on a bike or whatever, they're doing 'people from the front lines of cancer.' That would be us. Pablo wasn't too interested in the TV cameras or the idea of sitting in a tiny room under hot lights, so I did it by myself. That was fine with me. I knew that I didn't want him in the room for part of it anyway. I had things to say that will not be appropriate to say to him or in front of him until he's much older.
There were four people in the room—director George Hickenlooper, two cameramen and an audio tech. 60 seconds in, we were all crying. It was ill. I say that cos they were there to get authentic s**t. I assumed by their tears at several points of the interview that they got what they needed. The energy in me that would normally be nervousness in a situation like that transformed into calmness and clarity. I was able to put together words and sentences that conveyed the horrifying forgotten moments, the gradual numbness to anything in our lives except Pablo and his well-being, and, of course, the incredible grace and serenity and power we have found in ourselves, in our family and in our community. We sat in there for what seemed like an hour. So we covered a lot of ground. I talked a LOT about our community—if you are reading this, that means YOU!—and how the Pablog has had over 135,000 page views since we wrote the first post on May 18 2008. George was extremely gentle and nurturing in his interview direction. Great questions and great care in how he phrased each sentence.
From the moment I met him, I could tell that George was a very talented dude. He sat right in front of me, with my left knee touching his. As I spoke I looked him in the eyes. He did not flinch once. From writing this blog and speaking about Pablo's cancer journey to all of you and at CHLA events, I realize why God gave me these talents. I've put them to good use for years, but never really felt like I'd found the precise purpose for those talents. Communication from the front lines about the darkness before dawn; the watching Pablo as he sleeps wondering...and wondering...and wondering; advocating for P on every level every day about everything (I spoke a LOT about Jo Ann in this realm); the absolute need for Jo Ann and I to have self-care and self-respect during this time; the soul-pummelling pressure of working 14-16 hours at the office and then pulling the overnight shift at CHLA; my misapprehension that the lightning bolt of cancer wouldn't strike twice in my life; and many other topics I can't recall.
After the taping, I rode my bike to CHLA and met up with Jo Ann, Polly and Pablo. We met lance in the fourth floor playroom—a room that's become P's home away from home. It was so natural and wonderful to meet him in our environment. It was so cool. He walked up to me and said, 'Hey—we talked on the phone!' As he shook Jo Ann's hand, he said, 'Hey Mom!" She swears it was because she wasn't looking. Lance is known for incredible focus. In a room full of screaming kids, we had a 10 minute convo as if we were in a private place. He also turned Pablo from a cranky mood to sedate just by asking, 'Hey Pablo, you wanna take your picture with me?' Without hesitation, Pablo flipped his frown upside down and walked over to Lance. He put his arm around Lance's leg, and the shutters started flying. I'll never forget that....There was a press corp covering the event, huddled in the middle of the play room as about a dozen cancer kids and their parents waited their turn to meet the man who beats the odds and has lived his dream for the past 13 years. After the meet + greet P, P and J A went home and I went to the ride start area.
The ride itself was fun. Very short—only two miles. We all wore street clothes and regular shoes. Strange. I hooked up with Ben Harper at the start line. Our friend Justin Meldal-Johnsen, one of the most upstanding dudes I've ever met and whom I'm honored to manage, is producing an album with Ben at the moment. He was meant to come on the ride, but, like so many people lately, is sick as heck. He rang Ben prior to the ride to let him know I'd be coming by to say hi. Like so many people JMJ introduces me to, Ben spoke to me like an old friend from the jump. We rode all the way down Sunset Boulevard talking and laughing. He heckled Lance at the start line—joking about racing him. He and Lance are dear friends. Lance called him 'a brother from a different mother' in his introduction of Ben's performance at the post-ride Livestrong event at the Montalban Theater.
Ben's a great guy, hands down. His son Ellery was at Walther School with Pablo during P's first year there. I'm not sure we ever met, but Ben swears we did. Ben hadn't heard about Pablo, and was shocked when I told him. Have to say, he took it pretty hard. I could see his kids' faces flash in his mind. Then he said that he couldn't help but wonder how he'd feel if one of his kids were in Pablo's shoes. Prior to this journey starting 10 months ago, Ben's words and energy would have stopped me in my tracks for a couple days. Today, that 'what would I do if...' sentiment is something I deeply respect coming from others, but I can't hold onto it too long.
At the theater, I realized there was something else really powerful going on: I was standing there with many of my core cycling friends, sharing the experience. The experience of being around treatment, docs, scientists, and advocates like Lance—has become just life to me. Standing with me watchin Lance speak were: my coach, Rick Babington (who works with Lance's coach Chris Carmichael), Piero and Michael, who I ridden with earlier in the day, our Friday morning compatriot Diarmuid Quinn, and Adam Harrison from Dangerbird who introduced me to the Nike people and got the whole Livestrong ball rolling in the first place. Another major detail about Adam: many years ago when he was my assistant, he would not stop goading me until I asked Jo Ann on a date. Standing behind the mixing and lighting desks, I experienced a warmth, and basked in a real moment.
All of these dudes have walked the path with me. Helped me to stay alive and sane. Helped me to be a better person. As we stood there listening to our idol speak about changing the world through cycling + art + music + action, it was clear that I was witnessing one of the gifts of being a cancer parent.
One of the many gifts of being Pablo's papa.
Saturday, March 7, 2009
For now check out these pics of our Livestrong afternoon, our hang with Lance Armstrong and the ride down Sunset Boulevard after we hung.
Me and Ben Harper on the start line. Ben's son went to the Walther School with Pablo. He hadn't heard about P's cancer treatment and was shell shocked upon hearing the news. Ben and my client+friend Justin Meldal-Johnsen are producing an Australian artist named Grace Woodruff. We talked all the way down Sunset Boulevard. A great man.
Friday, March 6, 2009
The home nurse was waiting outside for us when we arrived. He came in and explained everything we received and showed me how to administer the Ampicillin. Not too complicated, but after 40 minutes it didn't look like any of the medicine was gone from the ball that self pumps into his line. After a couple of calls to our care manager at CHLA and the pharmacist, I tried to flush his line and discovered that the nurse had not actually UNclamped his line - so none of the medicine went through. I cleaned everything with alcohol and started over. This time it all worked. Thing is, now Pablo is feeling warm—teetering on the fever mark that demands a return visit to the hospital. I'm kind of freaking out, but trying to remain calm. Going back to the ER tonight does not sound like fun to me... but we do what we must and I'm taking his temp every 15 minutes. 99.7 at the moment.
Not to "put it out there," but I am emotionally preparing for the possibility that we will be going back...
The little P, on the other hand, is happy and smiling and laughing and playing with his doggies and loving being back home - for now.
Thursday, March 5, 2009
Dr. M rounded today which was awesome. We love seeing him when we are there. We are predicting a delay for chemo, but probably not a full week. On Monday, we have to go in for the radioactive GFR kidney test. This test's results give Dr. M the formula for our next round of chemo... Carboplatin to be exact. This will be our fourth and possibly final GFR. That's another thing Dr. M spoke to me about today.
As I requested, he spoke with all of his colleagues about the additional round of chemo that I have been bringing up in every meeting. He holds his position and has an army of amazing minds (like his) standing behind him saying that it is NOT necessary. They all feel like Pablo will have received ENOUGH chemo after this next round. He even said that if we wanted to stop now, he wouldn't put up much of a fight, but that we should complete our original road map which will end after this next round of chemo. This is hard for me, but as he also said, if we were just going to follow a straight protocol without modifications, then we could be anywhere without an oncologist. His job is to give Pablo his best plan and he has done that. As all of you know, we love our onc... really love him, like LOVE LOVE him... and we trust him and we believe that he is caring for our son and all of us, really, like we were part of his immediate family. He treats ALL of his patients like that, and we feel fortunate to have him on our team.
With that said, Jeff and I need to go over all of this and make our final, no looking back, no regrets decision. It's time to turn it all over, people! To PABLO, to Dr. M, to the Universe and to God! All of them need to do their jobs and we need to accept our fate. We continue to have faith, hope and optimism. Pablo is ready to be done with all of this. His bumps are gone and they are not welcome to come back EVER. So, here we are today.
We continue to walk with gratitude and love for all of you through each and every day. Today is a good day.
Tuesday, March 3, 2009
Due to Pablo's bottomed-out blood count, he will need to complete 14 days of antibiotics starting with the first negative blood culture, which was Sunday's blood draw. Before we had an exact diagnosis on the bacteria, we were covering bases with two other antibiotics, and now we will be switching to one, ampicillin. I was told that we would get another platelet transfusion tomorrow and be on our way home with a home nurse coming over to meet us and show me how to administer IV antibiotics to Pablo so we can continue to medicate him around the clock for the remaining 11 days. Fine—I'm up for the task...no problem.
At some point when all of this information was coming my way, I just thought, 'What does Dr. Mascarenhas think of all this? Does he know everything that's happening in our little corner of 435W...and would he agree with what the attending, the fellow and the resident are saying?' I sent him a quick little email letting him know that we would like to see him and he said that he would stop by after clinic. On our way to the playroom, we saw Dr. M coming off of the elevator. He acknowledged straight away that Pablo is looking great, but that this is what we always worry about. Pablo had a bacterial infection—this is the risk! I told him that I was under the impression that as far as bacteria goes, this is a better one to have—possibly even a contaminate... "Bullshit," he cut me off. I have to admit, I was taken aback. Dr. M is incredibly gentle, yet firm with his thoughts, comments and game plans involving Pablo. This is the first time that I felt like we were taking something way too lightly. I told him that we were being sent home tomorrow, blah blah blah... "No way!" Fine, We are not interested in taking risks with our son's life—we will stay as long as we need to in order to keep P safe. That said, it still manages to change our mood and energy.
I asked Jeff to stay at the hospital tonight, so that I could be home with Grady and drive him to school in the morning. I even went out and bought fillets to cook for dinner tomorrow night for all of us... just another lesson in everything can get turned upside down in a flash of a moment. Learning how to roll with it has not been so easy for me this time. I'm sad about it. It's been another incredibly rough week on our floor and in the Wilms' Warrior world. Two sweet kids from our floor and three brave soldiers from my Wilms' email group have passed this week. Another beautiful young woman, exactly Grady's age, had to have her leg removed below the knee. That's the reality of what we're living these days.
So, thank you all for listening, caring, praying and continuing to cheer us on. And, please keep the WORLD of pediatric cancer families in your prayers.
Woke up yesterday to an email from Fred with a link to a radio/video interview with Bono and Edge. In the interview, which took place Monday morning, Edge revealed his addiction to Eagles Of Death Metal. I have that addiction too and I am grateful to call myself the manager of that band+excited to hear their name in the Edge's Dublin accent. I don't care how old I get, that kind of stuff still gets me. And I ain't too proud to say it.
Woke up this morning and bought the new U2 album on iTunes. I am a fan, and that's what fans do: they purchase records. Jo Ann hung with+saw them play while floating down the Mississippi River on the Riverboat President on February 11 1982. I fell in love with their songs on the dry land of album rock radio in Milwaukee and was fully blown after seeing them devour Live Aid 1985. I know people have their opinions on U2 and other huge bands. I love em and I ain't too proud to say it.
On October 7 2008, U2 guitarist a/k/a Jo Ann's 30 year crush, sent Pablo a hand written note. The 80s were great for all of us. I graduated grade school. Jo Ann moved to DC, then LA, to work for Esprit. The Edge, well, you know what he did: three chords and the truth and all that.
But many rattles and many nursery rhyme hums later, two people who floated down the Mississippi on that riverboat back in the 8-2 found themselves in another esteemed group: cancer parents. Edge's little girl Sian went through leukemia treatment in 2006. She is a cancer survivor. That's pretty deep when you think about it. Let's say you saw this scene in a movie: 120 people on that boat. Two of them, two decades later, would meet people, fall in love, you know, um, consummate that love, bear children...and those children would be diagnosed with cancer.
That's real deal bidness right there. But I'm gonna end on a positive note re: Edge's note. It gave us and gives us hope and made us and makes us happy. A simple piece of paper with ink on it. It's one of the reasons I am dedicated to this blog. Cos all I have to do is sit down and tap the keys. Doesn't matter what I say. What comes out is the truth. Getting rid of it makes me lighter and makes room for hope. Based on a few comments we've gotten here and from running into friends, I have ascertained that our blog+the words we write on it has given hope to others.
Sometimes I go back through the comments on the blog—letters from all of you rock stars in our lives—and I read the love and hope and shock and dreams. All of it. I take it in. And it reminds me we are not alone in this game. Remembering we are together, connected, not alone—that's the only game I want me and my familia to be in.
All of this coalesced in my head, once again, this morning, as I found myself tapping the BUY button of Edge's new record.
What I'm talking about is hope. A simple gesture sent a huge jolt of hope through our lives.
Monday, March 2, 2009
That's what he said when he put on his snow boots (hand-me-downs) from Grady. He jumped off the bed and said, 'Oops! I forgot to put on my pants before I went to work!' His O.G. Silversun Pickups tee is one heck of a work uniform for a job down the street.
Right before P did that, he picked up my Blackberry and called Peter. They chatted for like 10 minutes. I could only hear P's end of the convo. It was hilarious and I enjoyed watching Pablo work the phone.
It's bedtime over here. Nurse Danica is hooking up P's meds. Jo Ann has made the parent bed under the window. Normally she sleeps in bed with P, but she is still getting over being sick and had a rough night last night.
I'm headed home to hit the rack myself. I am still fighting some funkiness in my head and in my gut. It kept me up half the night last night. Hopin for a better go of it tonight.
This is Pablo's first CHLA stay since we moved into our new office. We are 90 seconds—by car or bike—down Sunset Boulevard. I popped over here between meeting to say good morning and to hug my lovely wife and son. When I walked in, they were deep in a game of Operation: SpongeBob edition. Pablo let me pull a flaming heart out of Mr Bob, and he let me pocket the $300 fee for doing so. Great, now I can buy lunch at Vons next door.
On the medical front: the bacteria that's keeping us here has not shown itself in any tests since the first one. That's good-ish news. But it's not a get out of CHLA free card. They will still do daily blood draws and scan for any funny stuff. And P will remain on multiple daily rounds of two different antibiotics.
There's a chance we will be able to go home sooner than the seven to 10 day frame that I mentioned yesterday. The docs want to see a sustained uptick in P's white blood count in order for that to go down. We will have to administer the antibiotics at home in that scenario. That means an electronic I.V. machine will have to be delivered, and we'll (most likely Jo Ann lol) learn how to hook up P's port and start the machine. Seems easy enough. Especially with the HUGE upside of Pablo being able to be HOME.
We think we're at least 48 hours from this potential discharge.
OK, time to kiss the boy goodbye.
Sunday, March 1, 2009
This is THE kind of thing that can't be handled lightly. Pablo does not need a second major front in the war. One is enough.
We always know that this phenom is not caused by one person. And my critique of the situation is not aimed at any one person or department. CHLA is a big organization, and big organizations are prone to paralysis. Even on short, oft traveled paths like moving a kid with a well-worn CHLA frequent flyer card from the ER to a room 72 feet above.
Because Pablo has had an intermittent runny nose, he had to be put in isolation—ie, our own private room. Frankly, finding this rarest of room types was part of the hold up last night. We are in room 435, right across from the 4 West nurses station. We've been in each and every room in 4 West many times. But I think 435 might be the first room we were ever in. All the rooms look basically the same on the inside; the view from each is the defining characteristic. 435 has a narrow chunk of a view between the CHLA north tower and the CHLA research tower across sunset. The view is straight up through Los Feliz and the Griffith Park mountain. For me, it's a calming view. When I ride up there and look down, it's a zen scenario.
Jo Ann just called from CHLA. Pablo was hot through the night, but got a good night's sleep. His blood culture shows a slight infection. This is why we have to go to the hospital when P's temp is at/above 100.4. Any bacteria in P's body is a big deal when his immune system is as feeble as it is right now. But being at CHLA when the bac shows its face gives the docs lightning fast response time. He will be put on another powerful antibiotic right now, and they will continue to pull blood from his port throughout the day to monitor the situation. This is a serious sitch. But we have no reason to be alarmed.
Grady and I are heading out the door now. First stop: Intelligentsia for Jo Ann's latte. Second stop: CHLA. I'm armed with the Sunday NYT and the new Vanity Fair, and G's grabbing a few of P's fave DVDs. When we get there, Jo Ann and Grady will head home so she can shower and regroup and G can dig in on 'The Count of Monte Cristo.' I am trying to convince him to eat a Monte Cristo sandwich but he is resisting. Don't blame him. From what I recall from my Milwaukee Greek deli days, a Monte Cristo involves the deep frying of a large, meaty sandwich. And G's not buying my Animal House hazing BS. Smart kid. Now I just gotta figure out when's an appropriate time to give him the debut NWA album 'Straight Outta Compton.' Jimmy and I talked about it the other day. He thinks it's OK to give it to him now. Jimmy also started singing one of my fave lines from the album: 'Strawberry, strawberry the neighborhood.....' If you know, you know. If not, I ain't gettin into it here on this family-oriented blog. G will be 15 in six weeks (18 April), so it's time to kick up our cultural guidance a notch or two. You know, so he learns about cool stuff at home, not on the street...or whatever they say.
Getting back to today. When Jo Ann returns to CHLA in the early aft, I'm heading to the office. Have a feeling my inventory of work hours will be truncated this week. And, as I am fond of saying, s**t rolls downhill...so I better get ahead on my workload while I can.