End of Delayed Intensification, Beginning of Maintenance, Casper’s 3rd Birthday and Uncle Lou’s Big Ride

First, as some of you may already know, in a few days Casper’s Uncle Louis and Aunt Jaye are departing for Hawaii. But Louis and relaxation are a bit of an odd couple, and he has more than a little masochism in him, so it comes as no surprise that he has decided to dedicate one of his precious vacation days in Hawaii (that might otherwise be spent re-enacting a Corona beer commercial) to riding his bike up the grueling Haleakala Highway in Maui…in honor of Casper. Wow! There is now a link to his blog page on the links page, or you can find it at http://www.climbforcasper.blogspot.com. Please check it out. Thanks Uncle Louis!!!

Next, to get everyone up to date on Casper, he ended up getting admitted to the hospital again just after Janet left for England. After two weeks it became obvious that Casper did not agree with the cytarabine we were administering to him through his port at home. We were supposed to give it to him, in two separate rounds, for four consecutive days a week over a two week period. But he landed in the hospital each round after receiving only his first dose at home. He developed really high fevers both times, lost his appetite and generally didn’t feel well. The skin issue became much more severe the second time around. A bright red rash broke out all over his body and we were put in isolation for several days while the doctors ruled out the possibility of it being contagious. Thank God Maria’s friend Izzy was in town visiting so there was someone to take care of Amelie, feed the dogs and smuggle wine into us at night while we waited out the storm at the hospital. Izzy is awesome, period.

After we got past the two cytarabine rounds, things became somewhat more civilized and less surreal. Casper began to physically recuperate after getting absolutely hammered during Re-Intensification. His hair is on the rebound, he is finally back to his original energy level and that great sense of humor is definitely 100% back. Maria’s mom returned from a trip to Europe and came up for a visit and to help with the kids, and Maria's dad and brother Andy also made the trip to Portland to see everyone and lend a hand in helping us regroup. Casper absolutely loved seeing them.

The transition from Re-Intensification to Maintenance was fairly painless as well, except it was delayed by a week because on Casper’s scheduled start date his blood counts weren’t back up yet. But yes, CASPER IS NOW OFFICIALLY IN MAINTENANCE – HALLELUJAH! We even have a treatment end date: May 10, 2013. That may seem far off at this point but at least it is a date certain we can mark on the calendar, as long as Casper remains in remission (knock on wood). While he will continue to receive medication daily at home, Casper’s hospital visits will become less frequent. He was even able to begin going back to nursery school last week.

One final note, we celebrated Casper’s third birthday last week. We stuck candles in a Boston Cream Pie and had a mini-party with Mae Mae (Casper’s original homie) and her mom Erin at our house. Erin and her husband Jason also provided much needed Amelie coverage during the second hospitalization (thank you!!). Casper’s birthday was bookended by quick visits by Spencer’s sister Marian before and his brother Louis after. Birthday gifts generally fell into two categories: train stuff and race car stuff, and there were waaaaaay too many of them for his own good. Still, it was a very happy birthday week.

Thanks to everyone for their continued heartfelt generosity, well wishes, love and support. Please don't stop sending the positive thoughts our way, we can't tell you how much it means to us!**

**Another post hammered out by Dada, who in posting agreed to indemnify, defend, save and hold harmless Mama, her officers, agents and employees, from any and all potential claims, suits or actions arising out of the post.

End of first half of Re-Intensification

So just a little update on the past few weeks. Casper completed the second round of steroids. The second dose was a little harder on everyone, and the toll the chemo is taking on his body was also more obvious. In addition to his explosive roid induced anger outbursts, he's been quite pale and lethargic at times. The hair that was growing from his head has mainly fallen out again. Casper recently learned how to do sommersaults, and so he's been practicing this skill at home, as a result he's created a backwards mohawk effect at the center of his head. There is a perfectly straight line of shiny baldness running down the middle with peach fuzz around, it's quite funny looking!

We've known that the possibility of being admitted to the hospital over this period was high, and Janet very generously offered to take the long trip over here again to help. The first week of her visit was nice and event free. Casper's bloodcounts were good enough last Wednesday for him to start phase II. On Friday, however, Casper started spiking a fever and developed a few unidentifiable red dots on his chest. We were admitted back to the hospital that night, with concern that the rash might be chickenpox which can be serious to immune compromised people. Because of this, we were placed in an "isolation" room, and Casper hasn't been allowed out for the past two days. Janet has been great and has spent the last couple days with Amelie at home while Spence and I have remained in captivity with Casper :0)

Since he's been here Casper has received one large dose of steroids (lucky us), anti-viral medication, IV antibiotics and fluids for the past couple days and he's doing very well, he even has color in his cheeks again which we haven't seen in a few weeks. The spots on his chest never got worse, so today the disease specialist concluded that he just developed a bacterial skin infection which we are very relieved by. We just got the green light from the doctors to leave our room and we are expected to head home later today. We took a one day break from the chemotherapy, but now that he's "fine" they are resuming with the program again. Hopefully he'll tolerate the next few weeks of therapy well and continue to fight off infections, and we won't be back here too soon!

JUNE/JULY UPDATE

June continued to be a good and uneventful month, (and the weather remained dismal). Casper had frequent visits with friends and attended his nursery school on a regular basis. He is so social, something neither of us attribute to ourselves, so he thrived being back with his old buddies again. His last day of school (for the time being) was on July 6th and we started Re-Intensification July 7th.

As I mentioned earlier, this is a two month phase involving regular treatments with a variety of powerful drugs, some which he's already taken, and others which are new. So far he's been doing well and is taking his intensified chemotherapy regimen without too many side-effects. He also finished the first of two alternating on-off weeks of steroids on Wednesday. We are enjoying the week off right now and he begins his second round this coming week. Again, his response so far has been better than anticipated. Other than the expected immense mood swings and some weight gain, his legs were not affected this time, we're hoping this will be the case next week.

Over the next couple of months the treatments should wear on his immune system and lower his white blood cell counts again, so we're just crossing our fingers and hoping things continue to go smoothly. We will post updates more frequently just to keep people up-to-date on his progress during this time. We are also posting a recent video on this page and some new pictures on the photo page from this past month.

Interim Maintenance

We have been enjoying a rainy, but event-free Spring. Audrey shaved her head at the beginning of May at the St. Baldricks event and raised $1500 for childhood cancer research. She truly is an inspiration to all or us! Casper is finishing off the last four weeks of Interim Maintenance. This period of treatment is less intensive than what he's received until now, with Chemotherapy treatments every ten days for two months. The drugs he has been on recently are also not as strong, so this has allowed him to recover to a large degree from the earlier treatments. He even has some peach fuzz growing from his head right now.

We were told that if we want to travel any time this summer that this was our window, so we made a trip down to California to visit family. We were sort of disoriented by seeing sunshine for the first time in so long :0) but we soon recovered and we all had a lovely time. Since we returned Casper has attended Sunflower House a few times, had the opportunity spend much missed quality swing-time with his BFF "Lilie Mae." and he's becoming a master tricyclist.

In July, Casper will start a period termed "Re-Intensification" which is a two-month, two-phased, very intensive treatment regime. As I think I'd mentioned earlier, no blasts were seen during his last marrow aspirate and he's termed "in-remission", but based on prior cases, researchers have come to understand that despite this, it's likely there is the odd cancer cell here and there still lurking around, and by adding in the re-intensifaction phase, doctors have been able to significantly lower relapse rates. From what we've read and heard from parents and doctors, this is going to be the most brutal period he's seen treatment-wise. He'll be back on the dreaded steriods again, (luckily he should only take these two weeks), but he'll also be introduced to three new very powerful chemotherapy drugs. We've been told that he'll be miserable, and there's about a 50% chance of him being hospitalized for a couple of weeks during both of the month-long phases.

It's been so great and revitalizing seeing Casper regaining his strength and bounce, so it's going to be difficult watching this regress for a period, but we are simultaneously grateful day-by-day just knowing that he's responded so well up until now, and that there is such a good chance that as a result of these incredible (and simultaneously medieval) medical interventions that he will continue to live a long and full life.

We also want to continue thanking our friends and loved ones for their continued love, wisdom, concern and support. We're also touched and surprised by the outpouring of kindness and generosity from people who don't even know us personally! We are blessed to be surrounded by so many caring, remarkable people. We haven't done a stellar job in communicating this with the outside world, and I'm sincerely hoping to: a)try to re-aquaint myself with the telephone sometime in the near future and b) post our next update a little sooner!

April 2010, Consolidation

This month has been a good month for us from a medical standpoint, and we've also enjoyed visits from Casper's Yia Yia (Grandmother), his "Granny Nanny" Janet, Uncle Louis and Aunty Marian, and Aunty Sascha. Although Casper's mood improved quickly following Induction, it has taken some time for him to morph back into his original shape (we're still working on the chins :0)), and for his legs to start functioning again. The muscle in his legs had atrophied considerably from the steroids so, unlike the rest of his body, his legs were very thin and spindly by the end of March and he had to spend time re-building the muscles again. The process of re-learning to walk, though, was generally a joyful one for Casper. The first day he crawled across the room successfully he squealed with glee, "Look at me Mama, Dada, look at me!!". It was as if he forgot that only weeks before he'd been running and climbing. He spent a few days proudly "showing" Amelie how scoot across the room. Next, he started jumping in Amelie's little doorway jumper, and then staggering across the room holding onto the baby "lawn mower." For Spencer and me, seeing him work so hard to just balance himself had an undercurrent of horror, but Casper's pure delight at each success ended up shifting our own perspectives about the whole ordeal and we too found ourselves delighting in each little achievement. Casper is now walking quite steadily, and attempting to run which is also quite amusing to witness.

The latest treatment phase called "Consolidation" has been a 29 day regime. We are almost at the end of this phase now. It has involved Casper taking nightly chemotherapy pills, and going in three times during the period for intrathecal Methotrexate (another chemotherapy drug). He had to be sedated for these three treatments as they inject the chemotherapy into his spine. He has experienced few painful side-effects to these drugs other than being somewhat miffed for a few hours following his treatment and having one unpleasant late-night trip to the Emergency room, but luckily he was able to be discharged the same evening. Casper's next appointment is on May 3rd, so we'll see then what is in store for the next couple months. We are hoping he will continue to improve and return to Sunflower House for a couple days a week so he can catch up with his "homies".

The other big news from this month is Amelie turned ONE-YEAR-OLD!!! She had fun eating her first meringue, and staring at her cake before Casper blew out the candles for her and unwrapped her presents. Next year, I doubt she'll let Casper take this on, as she's definitely starting to hold her own, that's my girl!

Finally, one last plug for Audrey who will be shaving her beautiful hair off on Sunday to raise money for Children's Lymphoma and Leukemia research. Obviously we think this is a very noble cause and urge people to check out her webpage and the St. Baldrick's foundation webpage for more information.

Audrey is Shaving Her Head!!!

Many of you know (or know of) Audrey. She is Casper's "handler" when ma and pa aren't around. So, a few days ago she dropped a bombshell of a surprise on all of us by announcing that she would be shaving her head bald at the upcoming St. Baldrick's Foundation event on May 2 in honor of Casper. St. Baldrick's raises money for cancer research and staffing money, and does cool things with it like fund research for less profitable solutions, or positions for young up-and-coming doctors who might not otherwise get the nod for scarce federal dollars when pitted against Member-of-the-Establishment doctors...our kind of organization. Anyhow, Audrey is raising money to help St. Baldrick's continue its noble mission, in honor of Casper no less, and so we're plugging the event right here, right now:

http://stbaldricks.org/participants/AudreyThomas

There is also hypertext link to the page on the "Links" page of this blog.

Go Audrey Go!

(This plug was written by Dad -- Mom had nothing to do with it other than censoring some of its content.)

End of Induction

The last couple weeks have been somewhat challenging and fatiguing. Towards the final days of his steriod regimen, Casper started to experience some severe side-effects. In addition to the freaky amount of weight gain (see pics), he also lost the ability to balance and stand up. Additionally, the drugs severely altered his personality, and we felt as if we were witnessing him morph into a completely untamed wild animal in front of our eyes. During the past few days of the 'roids he spent literally all day and all night growling and crying (in-between mouthfuls of macaroni and cheese). Any attempt by us to soothe him was predictably returned with a swipe and a "Go Away," or a "I don't like...". He was very upset and in chronic pain, and Spencer and I felt quite helpless in our efforts to comfort him. We were able to keep him well fed though, Spencer spent a couple weeks on the couch downstairs primed to respond to Casper's requests for food throughout the night.

Thursday the 25th of March marked the last day of Induction, which also meant the last day of steriods (at least for the time being). Casper went into the hospital and had another bone marrow aspirate, lumbar puncture and the picc-line in his arm was replaced with a "port." The results from these tests are a crucial factor in predicting how he should (in theory) respond to treatment, and in determining which protocal in the treatment "road map" he will be taking.

We received the results back from these tests this past Tuesday, and we were cautiously optimistic to learn that Casper has continued to respond very well to treatment, and that he is officially termed "in remission" at this time :0). His treatment protocol at this point should be the most benign, toxicity-wise, of the four arms on the map, but as with all the protocals it will remain a three-year program.

It's amazing to see the resiliency of youth. Within a day of being off the steriods, the storm cloud above Casper's head subsided and the rate at which the transformation took place was astonishing. The past few days have felt surreal, it has really been therapeutic to see him smiling, laughing and cuddling, and all of us have felt emotionally re-charged by the return of his quirkly little personality. Unfortunately, Casper still hasn't gained back the use of his legs yet. The doctors are confident that this is a side effect of both the steriods combined with one of the chemotherapy drugs, Vincristine. He still has one more dose of Vincristine so this may not change for a while, but the good news is at least he's deflating, so carrying him around is not quite so crippling!