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!

March 1-20th-ish 2010: INDUCTION

First we want to thank all the people who have been so kind and generous during this ordeal. We are less than a month into the process and we have so many people to thank. We don't want to attempt to list you all and hurt someone's feelings by missing someone or something, there have been so many gestures of kindness!! We also don't want to offend those who have not been able to be here physically but have been sending us good thoughts from afar. We truly feel blessed by having so many loved ones in our lives.

Casper arrived home from the hospital at the beginning of March. His good white blood cell count was very low at the this point due to all the initial treatments he had received in the hospital, so his risk of developing an infection was high. We were all worried he was going to have to be re-admitted within a few days, but despite the fact that he and his dad picked up a nasty stomach bug almost immediately, he was able to battle through it on his own, and we've been at home most of the month. Spencer on the other hand is still recuperating :0).

Over the past few weeks, Casper has gone through some incredible physical transformations. First of all, he and his dad went for a haircut shortly after arriving home. Casper was thrilled with the new look and the fact that his dad was sporting the same one. More incredible is the effect of the 'roids, both physically and emotionally. Casper has transformed from a normal toddler of average size to a Chris Farley Mini-Me with the temperment of, as Spencer put it, a "rodeo bull stung by a bee." Suffice it to say he is less than pleasant both on the eyes and as company right now! We are longingly looking towards Thursday when this course of steroids comes to an end.

As far as his responsiveness to the treatment, the first marrow aspirate done on Day 15 of his treatment came back with very good results. The cancer appears to be on the way into remission, and the Dr's are very pleased with his bloodwork at this time. Casper will be having a number of tests done this Thursday to determine which protocal to follow during the next "Consolidation" phase, depending on how he is responding to the chemotherapy.

Amelie, although on the receiving end of much of the steroid side-effects, remains in high spirits and shows a lot of love and compassion towards her brother.

FEB 23, 2010: CASPER'S FIRST WEEK

Casper arrived at OHSU in good spirits. The rest of us were reeling a little, but he was chatting up all the nurses, and running around the halls. We were checked into the swanky, "suite" room, which was purely luck. It is designed to have a negative air flow for patients who can have no exposure to outside bacteria or something, but I guess there was no one in at the time requiring this treatment so we got the sweet party penthouse. As soon as she heard the news, Casper's Auntie Ellie came right up to the hospital where she added much needed moral support and spent the next few days running hundreds of errands for us. "Yia Yia" Ariel also arrived in from California late Tuesday night and spent the week helping us maintain a level of sanity and stability.

We were introduced to a couple of the doctors on our team, Dr. Russell, and Dr. Kurre, and the resident Joy Johnson. They were very warm and spent a lot of time in the room with us, going over what was going on, what news they did know, what news they didn't but would get for us, etc. They informed us that the biopsy showed pre-B leukemic cells within it. Leukemia does not usually present in this fashion with one isolated point of origin. As a result of this strange presentation, it appears that we were able to find the leukemia early before Casper became very ill or his bloodcounts were very abnormal, which was lucky. The fact that pre-B cells were found in the biopsy also indicated to the doctors that Casper had Acute Lymphoblastic Leukemia (ALL), rather than Acute Myaloidal Leukemia (AML). The treatment for ALL is generally less intensive, but has a longer duration. We were a little shocked to learn that treatment for boys lasts about three years, but thankfully most of this with any luck should be on an outpatient basis with a number of specific treatment phases over this course of time. Casper's age at diagnosis is also considered a very good prognostic factor. Generally children between the ages of 2 and 10 have the best long-term results.

Over these first days, Casper had a Bone Marrow Aspiration to find out how much of his marrow had cancerous cells, and a spinal tap to see if there was any cancer detected in the Central Nervous System (CNS). Again we were relieved to learn that at this point no cells were detected in the sample taken from the CNS, and there was only a moderate number of cells in the Bone Marrow. Chemotherapy will target both, as it's common for cancer to show up in the CNS if it's not preventetavely treated. The final test that was done during this initial week which is a relatively new addition to the treatment protocal was to test the actual genetics of the cancerous mutations. This is not to be confused with the DNA of Casper's healthy white cells. Researchers have come to discover that the existance of certain chromosomal patterns in the cancerous cells may indicate a higher or lower likelihood of success from standard chemotherapy treatment. The results took several days to come back, which was a little nervewracking, but I guess we need to get used to this. Casper's cancer was found to a triple trisomy chromsomal pattern that is likely to respond favorably to chemotherapy. So we've found one other positive thing to add to our little battle quiver!

Casper started the preliminary "Induction" phase of his treatment while we were in the hopital. This is a more intensive period where he's given a number of chemotherapy drugs, and a strong dose of steriods for 28 days. The goal during this month is to bring about a full remission by killing the cancer cells. A full remission generally means that after this 28 day period, no cancer cells can be found in a sample, but the understanding is that there are still some cells in his body, they just aren't detectable with the technology presently available.