Clarity

Jon's going to elaborate on our Houston experience thus far, but that's taking a little time, so I wanted to update some key developments.

Essentially the normal 4 rounds of consolidation chemo are unlikely to result in a lasting solution for dad given his rare karyotype in the leukemia cells. Most AML patients have around a 30% chance of staying in remission, but with dad's mutations in the leukemia, he would have less than 10% according to his doctor at MD Anderson. But we have good news on that front, we have a preliminary bone marrow match (we are still waiting for high resolution gene sequencing to confirm) in dad's sister Sissy.

It was wonderful to hear how fired up Sissy was when she found out that she is the preliminary match, and humbling that dad's brother Buddy was disappointed he couldn't be the donor. Sissy pointedly referenced Donkey from Shrek in expressing her emotion, "Pick me! Me! Me! Pick me!"
We are still waiting on Paul's initial low-resolution results to come back, as men can create the marrow stem cells easier than women. But the stem cell doctor, Dr. Elizabeth Shpall was elated that we have a sibling match- which really reduces the likelihood of any potential difficulties down the road. If all goes according to plan, dad will be cancer free by his birthday, and confirmed by Christmas, with Sissy's help!

Even better, we won't have a relapse hanging over our heads in the future, as Sissy's stem cells should take over completely and dad's blood will become Sissy's normal blood. We will write more about the awesome process later (pictured below learning about all the transplant intricacies). But in the mean time, we have been sent back to good ole Louisiana to undergo a round of consolidation chemo while we wait for everything to be set up for the stem cell transplant. Even though we are ahead of the curve in having found the potential match (normally, patients will only now begin the search process), typically patients would undergo at least 1 round of consolidation chemo before a transplant. Ideally, they get the bones completely empty of everything so the donor's cells ride into the rescue.

So we have a few more weeks to savor the bayou before we put on our boots and hats and drive the wagon west for a while. Jon's already setting up an office at Jefferies in Houston, and we looked at multiple overpriced apartments this morning before we hit I-10 eastbound.

Preliminary Analysis

We just met with Dr. Faderl and got preliminary results from the latest bone marrow biopsy. The blast (cancer cell) count from the marrow (core) biopsy is below 5%. Final results will be out Friday and we will get certainty over whether or not that number is accurate. If it is, dad is in remission!!! Also, because dad's neutrophil count is above 500 (762 yesterday), we don't have to be hospitalized.

We are waiting to talk to a transplant specialist, probably tomorrow, and have been hounding the bone marrow registry to give us the results, 2 of dad's siblings' results have come back. It's quite funny the marrow registry is telling me that the doctor needs to confer the information along, as he didn't even set it up, we set all the marrow registration tests up. Anyway, we will post results when we get them.

Your prayers are working, please keep them up!!

Sunset

Another great day rolls into a summer night.

Nice Bounce

The absolute neutrophil count bounced from 45 to 182, a very welcome development. Dad is in great spirits, vitals are all good, and the last several days have seen a lot of walking around. He got a new meditation by Bernie Siegel from Wade and Muguet and he's been reading his book. Dad's also been whittling away at the cases of Mary's Gone Crackers that Mary Anne sent (Steven is helping too).

Just killed a 750

Dad had a great day, and we night-capped it with a 750mL of wine, mostly mom and Steven, but dad definitely participated. Dad's officially being transferred to MD Anderson in Houston most likely on Monday or Tuesday. Either they'll go for a transplant (assuming we find a match) or another round of biohazards to knock the cancer completely out. We are so thankful dad has responded to standard chemo, we now have evidence that the light at the end of the tunnel is not a hallucination and is the real deal.

We can't thank you enough for your thoughts and prayers, may we ask you to keep it up until dad's marrow is cancer free? Dad's gratitude below will be conveyed in person!

Lucky Number 7?

We got preliminary results back from the core biopsy, and the blast (cancer cell) count fell from 32% of the marrow to 7%. Remission is 5%, so while the doctor wasn't jumping for joy, we are certainly happy. Jon and I think it means that even though dad has a rare mutated leukemia, he is responding to standard treatment so far. That is clearly a good thing. The doc is calling his "buddies" at MD Anderson to confer on what to do next. We will keep you all posted once we hear back. Steven continues to aggravate the bejesus out of the lady at the bone marrow registry to see if we have any results. We expect them soon on his first 3 siblings.

Dad is pictured below telling the results to Jon, and also sneaking some sips of real wine Wednesday night. We will keep up the Nebbiolo regimen given the positive developments thus far!

More Birthday Photos

1 Birthday Candle

Sweet Pea (Paula) didn't need to think more than a millisecond about what her birthday wish would be. We had some carrot cake cupcakes from Steven's favorite bake shop- Babycakes of course. Vegan, gluten-free may not have passed the Oser test earlier this morning, but dad sure did like it. We only had one candle, nervous we'd set off the sprinkler system in the hospital, but Sweet Pea got her wish sent up to the heavens.

Earlier today mom had a VERY special visit from Claire Guilbault, Christie Oser, and Anne Prat. Midnight flights and long drives were nothing for this close group of Mount Carmelites. Don't worry, they had a proper visit at home instead of a hospital hallway catch up. You ladies REALLY made mom's day!

Of course she couldn't wait to return to dad, and this evening we're doing a wine and cheese night while we watch the sun set on Paula's first day of her new year. Happy 22nd anniversary of your 39th birthday, mom!!

Biopsy Done

Paula, the birthday girl, had to leave the room, but Jon and Steven stayed to watch the bone marrow biopsy. Jon was doing some old fashioned market research into his sector, and followed the lab technician all the way to the restricted area after the biopsy was taken. It was quick and simple, with a lot of pushing by the doctor. "You may feel a little pressure," was the understatement of 2012, although dad really didn't feel much of anything. He was awake, but under the influence of ativan. About 3 inches of marrow core came out (roughly 2mm thick), and the procedure was done after about 5 minutes.

Dad is feeling good, still really relaxed, and pictured below less than 5 minutes after the biopsy was taken.

Also, white blood cell count has doubled overnight but the neutrophil count has come down, perplexingly. And importantly, no more blood today.

New Quarters

Who knew serious cardiac health problems were elective? HCA is looking like it may have to pre-announce a tough quarter because our second floor was a ghost town this last week. They shut down the entire floor and moved the stragglers up a couple levels. And dad got hooked up with the suite of the hospital! Many of you know dad has a serious affection for clouds, and this room serves up the best, we moved in right as the sun was setting.

Tomorrow morning, the doctor is going to be here bright and early to take the bone marrow biopsy. That will take a few days in the lab, and we'll see if the 7 days of biohazards have had an effect on the rude leukemia cells. Please keep your fingers and toes crossed!

Back on Track

The past several days have clearly been some of the tougher ones, but today, dad is back on the right track. After the neutrophil count dropped to 18 yesterday, it's back to 42 and hopefully on the upward trajectory. Importantly, temperature is still benign and the rash has significantly diminished.

He's walking, laughing, eating, and in good spirits. Jon and Steven have taken the first step towards joining Carl in the frills-free hair club. We're less than 1 inch away from matching dad.

Tiny Dancer in My Head

In addition to a Benadryl addiction, dad's been hankering for Elton John, particularly Levon, Your Song, Burn Down the Mission, Tiny Dancer (of course). He woke up last night at 11pm to put on the earphones and reminisce. We really need the Pat O's piano players to show up, maybe we'll have to say a few things to the "Make a Wish" foundation that we won't be entirely proud of.

Spirits are up, rash is down, itching to get out of here...

Man on Fire

A nurse who will be shortly getting a pink slip didn't follow blood transfusion orders this morning (even after mom told her she needed to include more pre-medication) and then rushed the red blood cells into him, turning dad into a "man on fire," using his own words. He had a significant allergic reaction, and has been battling the subsequent flares all morning.

Thankfully the temperature has come down from 101.5 last night to 97.0, so it's not maximum discomfort. We couldn't even tell he was feeling poorly last night, as he was even pretending to drink some wine with us (pictured below with his concord grape juice). He is hanging in like a trooper, with the help of main-lined Benadryl.

Thank you all for your concern, but we really can't handle the call volume, so don't feel like we are ignoring anyone in particular, we just need a cool and quiet period to put the fire out.

Yul Brynner

After having the fever balloon to 100.9 yesterday, it's back in the 98.0-99.0 range. Dad's been sleeping well lately, and we think that's been bringing the temperature down.

Sorry for the lack of posts, we have all been distracted. Dad is hanging in there, keeping his chin up, and his absolute neutrophil count continues to bounce, hitting 75 this morning.

Oh and we shaved his head! Look at the new Yul Brynner look!

Big Bounce

Dad's neutrophils had a big bounce, the absolute neutrophil count has bounced from zero to 42 (on its way to north of 1,000) in the last 24 hours. He is feeling great this morning, and has already walked nearly 2 miles on the hospital floor. The bedtime whistler has kept the cheer going into the new morning. Whatever you all have done and asked the heavens lately, it is working and please keep it up!

Make it a great day today!

Positive Thought:
"Sweet are the uses of adversity,
Which like the toad, ugly and venomous,
Wears yet a precious jewel in his head."
William Shakespeare in As You Like It

Whistling in bed

Only one hiccup today, after the platelets went in too quickly, dad had an allergic reaction. Perhaps he planned it though, because a mild addiction to Benadryl has been building. But other than that it was a good day of waiting for the neutrophils to bounce. Dad felt great today, so much so that he's up like a kid on
Christmas eve, joking around at the terrible infomercials (don't worry the TV has been off except for the brief interludes when Paula is allowed to turn it on). Steven put on the western movie themes and had dad whistling in bed, he's outlasting mom this evening.

It's obvious there's been an improvement, even though lab results still show no neutrophils.

Walking the time away

We're still waiting on the neutrophil bounce, and walking the time away. Dad walked nearly 2 miles today, and is feeling well. Vitals still steady, one extra antibiotic was added to try and eliminate the red area around his main line port. Other than that, we've just been watching the clouds and lightning roll by, talking about life and trying to sneak some work in during quiet moments.

Wine thirty

Everything has been steady today, a couple bags of blood and a couple more hairs shed, but vitals all steady and no additional family members have been admitted to the hospital (phew)!

We're still waiting on the immune system to bounce, but as pictured below, we're passing the time well! Jon and Steven have mastered the art of smuggling Italian wine into the hospital, and dad is still sucking down the concord grape juice!

Carl Today and the Off-Site Office

Lightning Strikes

"God is happy, Msabu, He plays with us."

It's been one of those days- Carl's mom Rosalie (fondly known as maw maw to all family and non-relatives) had a routine fall at the Winn Dixie and showed up with one less pint of blood at the ER downstairs.  Shortly thereafter, lightning struck the parking lot and blacked out the hospital for a moment.  Then of course the seafood-platter-craver had an "all hands on deck" episode during the black-out.  

Rest assured, maw maw is doing ok, and even attempted to drive back home.  Thankfully Paul came to the rescue and is shepherding her back home.  

After having slept a large chunk of the day away, dad is feeling well.  Except for a few lost hairs, things are still in a holding pattern, waiting for his marrow and immune system to rebound.  The lack of wine over the last several weeks has caught up to him, and he's been downing the Concord grape juice.  Stand by for an update from the poet.  Have a nice Friday night, and thank you all again for your positive energy and prayers you are sending our way.  We're confident we wouldn't be in such good shape without them.  

H2No

Carl was allowed only 1 liter of water today, since his sodium was getting low, so he had a huge palate of juice brought in. Everything is going well still, and dad said he feels stronger than all the previous days. Odd to the typical patient in post-chemo recovery, he hasn't needed any blood today for the fourth day in a row. He feels nearly normal, and besides after walking a half mile on the floor (round and around), he can't tell he has anything wrong with him. Let's knock on wood and keep praying, hopefully we will have good news when they take the next biopsy.

God Bless 'Merica

Everything is going very well, dad is feeling great, and we live in 'Merica! It's a great day to count our blessings, and one of the ones we are very thankful for is our outstanding quality of healthcare. While Jon and Steven have a laundry list of things that could improve the efficiency of our system, all of the innovation in the industry happens in our wonderful capitalist country. Given Carl's rare karyotype, having access to exotic treatment options helps us sleep better at night. It's our hope that the pending massive changes to our system don't remove the incentive for companies and labs to continue to expand the boundaries of medicine.

That said, here's an update on Carl: white blood cell count has bounced from 100 to 800, but neutrophils are still running low. He has no fever, blood pressure remains low, and spirits are high. He's still on antibiotics until the doctor can confirm he doesn't have a blood stream infection. He hasn't needed any new blood in 3 days, which the medical staff has been shocked by (since the blood-cell-generating marrow has effectively been wiped out, patients typically need new blood every day). And dad still has a full head of hair, another pleasant surprise.

We're jumping through a ton of administrative hoops to get Carl's siblings' marrow profiled to see if they can potentially be a donor to Carl. The chance of a sibling matching dad is 1 in 4. The chance of the general population matching dad: 1 in 600,000,000.

Other than that, things are quiet and happy. We probably won't get the BBQ pit setup, we got a huge frown when we inquired about the feasibility here.

If this whole episode has taught us anything, it's that every day should be a strong qualifier to be your last. So go out and make it a great day! Thank you for your prayers and support. We have 4 religions praying for dad, an alkaline diet, modern medicine, meditations, satsangs, and a family that is all-in on restoring dad back to health.

"Ahead of the curve"

During the early morning interrogation, the doctor said Carl is "way ahead of the curve," with his health. His temperature remains below 98, and blood stream infection (not final until Wednesday) is still returning a negative result. This is really great, as one of the key determinants to seeing the light at the end of the tunnel is durability. Carl is "Built Ford Tough."

Dad is feeling great, even though he still has no neutrophils, so basically zero immune system and likely nearly zero substance in his marrow. He is chipper, walking, eating, and has remained out of bed all morning. No blood needed today, which the doctors were surprised by, but still some antibiotics going in on an infrequent basis.

Plans are underway for HLA-typing close family members to identify possible marrow matches should we be lucky enough to get to that possibility in a couple of weeks.

Separately, plans are also underway by Jon to set up a BBQ pit in front of the hospital for Independence Day. If he's actually serious, we'll post plans here. Dad can wave to everyone from the sealed window!

Absolute zero

While the white blood cell count has bounced from 300 to 400 from yesterday, the neutrophils (another type of disease-fighting white blood cell) has hit zero. Niente.

This is a computer reading, so it could have some error, but there's pretty much zero immune system left in dad.

He's still on antibiotics (cipro right now) and 2 days into the blood stream infection test, no bacteria have grown, knock on Carl Wood. Temperature has come down to 97.2 without any fluids going into his blood. And most importantly, dad's spirits are high and his vitality continues to bounce from the Friday low.

More platelets are going in at the moment, and the Benadryl has knocked Carl out.