NO NEWS IS GOOD NEWS....2011 in a Nutshell

I WROTE THIS BLOG A FEW WEEKS AGO, BUT WANTED TO ADD PICS BEFORE POSTING. I DECIDED I BETTER POST IT AND THEN WORRY ABOUT THE PICS BEFORE IT BECOMES 2013!

Hello!! Eeeek! Anyone out there still :0). Thanks to those of you who still check in on our little guy, I'm always surprised when someone tells me they were checking our page for an update. I'm sorry for the great delay.... but I've discovered from reading other blogs that this generally is an indicator that things are going well. For us, thankfully has also been the case in 2011 and into the first month of 2012.

Casper has taken his treatment like a champ for the most part and he has become an active participant during his doctor visits, eagerly "helping" the nurses administer his medicine during his monthly visits to Cottage Hospital. There have been what we would now term as "minor"complications during the winter and spring of last year where he continued to come down with pneumonia, a chronic ear infection and then finished the spring off with a nasty viral infection. Before he got diagnosed with leukemia, a diagnosis of pneumonia would have frightened me. Now, when he develops a fever or cough, I'm relieved to learn it's only pneumonia again.

Last June, after his third bout of pneumonia, and having tubes placed in his ears to try to minimize his persistent ear infections, Casper's oncologist Dr. Greenfield recommended we try to see how he responded to a type of blood transfusion referred to as an intravenous immunoglobulin treatment or plasma protein replacement Therapy (IVIG). Basically the treatment which involves using plasma from thousands of blood donors is administered to immune deficient patients to try to maintain adequate antibody levels to help fight and prevent infection. The medicine Casper takes daily is supposed to keep his immune system depressed by keeping his white blood cell count low - white blood cells being the cells that the Leukemia grows from. So it's my understanding that the IVIG is a way to boost his blood and immunity without affecting his white blood cell count.

At first I was hesitant to try it because the thought of using blood from that many people didn't sit well with me, but after being reassured that the risks nowadays are very minor, we decided to go ahead and see if these cells would give him a boost. Spence and I were blown away by the results. In some ways we had become so used to Casper being run-down that all of us had forgotten how different his overall mood and demeanor is when he's not fighting something off. All of a sudden he had a buoyancy and lightness about him that had been been absent for a long time. It was thrilling to see him so happy, rosy cheeked and full of stamina.

I'm hesitant to jinx myself, but since that first treatment in June, Casper has received an IVIG every two to three months, and has maintained his strength and health through the winter. Amelie has even come down with a couple flus that he's managed to stave off.

Speaking of Amelie, she is almost THREE now! We have been blessed to have such a loving, easygoing (for the most part), little lady. She absolutely adores her brother, and lights up even upon the sound of hearing his name, it's pretty comical. One day she'll wisen up...(:0)). She has also been lucky that Casper now combines his five-day-a-month dreaded steroid treatment with a mellowing anti-histamine. His behavior during this time is now tolerable, and he no longer pummels her down with the same frequency and intensity. Also Amelie's development of speech has worked to her advantage. She is able to tattle when she's being pushed around, and Casper has come to recognize her as another human being rather than as some sort of annoying pet. To my amazement hey are becoming good little friends and play-mates, and this development makes our lives MUCH MUCH easier.

Casper also continues to thrive at school. He loves his classmates and has two AMAAZZING teachers. One of his teachers is a breast cancer survivor and she's definitely taken a shine to him. Spence and I are still slowly adapting to living in Ojai. We love the beauty, I love the weather, but we miss the "vibe" of the Northwest and are still adjusting to the lack of restaurants/nightlife in the town. When I'm feeling a little down, I remind myself how lucky we are to have the biggest blessing of all and that's Casper's continued good health, (and of course Amelie's, but for obvious reasons his health is never too far off the radar).

Casper is still on schedule to finish treatment in May 2013. This day actually doesn't seem like many decades off like it did when we first heard it. when I think towards next May, there is excitement, but along with it comes a bit of a sense of dread. I know the drugs he is on are terrible on his body, but knowing there's something there fighting any potential cancer cells often keeps my anxiety at bay. Half of the children who relapse, relapse during treatment, and the other half relapse post treatment. He has a "great" prognosis, so I "shouldn't" be worried, but I just wish there was a specific day where someone would hand me a certificate that says "Congratulations, he'll now be fine." That's just life for all of us though isn't it! So we will continue as we are praying for and expecting good things, and being grateful for what we have day-to-day. Thanks again for stopping in, and HAPPY WAY BELATED NEW YEAR :0)!!


ADDED NOTE:****This is a plea that I had intended to add, and forgot until checking in on some families of children who are not faring so well. PLEASE look up http://www.bethematch.org. ANY person under the age of 64 is eligible to sign up as a bone marrow donor. Even those who are not eligible to donate blood are eligible. THE ONLY thing you need to do to put yourself on the list of candidates is fill out the paperwork and swab your cheeks for the saliva that will give enough DNA information to allow the database to know if you are a potential match for a person needing a Bone Marrow Transplant. Casper has not been a candidate, and should not be...knock on wood, but relapsed leukemia requires a transplant and other types of leukemia and life threatening conditions require transplants to give patients a chance of survival. Humans have such complex DNA that each of us only has a few perfect matches on earth, and the number of donors is very limited. The chance you would be contacted as a match are slim for this reason. However in the event that you are a perfect match for someone needing a donor, your contribution only requires a quick and relatively painless marrow aspirate to save a life. Casper has already had several aspirates to check his marrow, and the procedure is not traumatic, and well worth the potential gain. I URGE everyone to add themselves to the list.

Well that's it for now! With our love, the Los-Parsons clan.

OCT-DEC 2010

Wow, how time flies when life is busy and things are going well! Casper has continued to gain strength back and has remained in good health (knock-on-wood) despite the fact he is on a two-year, daily regimen of taking powerful immuno-suppressing drugs. It's been a very busy last couple of months for the family, but I'll go into that in a minute, first to follow up on Uncle Louis and his ride.

As we had posted in our last entry, Casper's Uncle Louis generously decided to tackle and succeed in completing an unbelievably difficult ride up Maui's Haleakala Highway, the to raise money to cover medical expenses for Casper. Uncle Louie must be quite the guy, because so many people came forward to support him and generously donate to Casper without ever meeting him/us. We continue to be mind boggled by the goodwill of others. Please be sure to check out Louis's web page to read about the ride and see pictures. We are also posting some on our page. Way to go Uncle Louis!!!

We finally set the date to make our long anticipated move to California, and decided upon November 15. The idea was this would give us time to get settled in before Christmas and Spencer could get a needed head-start on studying for the California Bar exam which takes place at the end of February (this of course, we've discovered was wishful thinking). October finally brought some good weather, which allowed us to soak in some local sights before leaving the beautiful Northwest. We even managed a long weekend trip up to Vancouver and Seattle, forgetting that we would be traveling on the days that Casper was due to take his monthly steroid dose. I think the kids have some good memories of that trip, seeing polar bears and a lumberjack show at Grouse Mountain in Canada, visiting the Seattle Children's Museum, etc., but Spencer and I returned home completely exhausted from four days of closely escaping many potential 'roid induced disasters. Handling Casper when he's on steroids is a delicate and skilled job that requires an amount of patience that I am not ordinarily accustomed or interested in possessing, and it also requires one to have lightning fast reflexes as at any moment he's likely to physically attack or strangle whomever is closest to him, the target generally being his poor little sister. And as has been mentioned before, Spencer and I have had to additionally develop an almost intuitive ability to respond to food requests almost before they are made. So yes, when we arrived home, after four days of that, we felt like we needed a holiday.

November was busy, busy, busy. I started to wrap up my business in Oregon, Casper said his goodbyes to all his friends at school, and his best friend Mae Mae. We were lucky to have an unexpected army of helpers emerge. "Yia Yia" and Auntie Lissa flew up to Oregon, and Auntie Lissa offered to drive one of the cars down with our dogs. During their stop over in San Francisco, Diablo expressed his appreciation by marking his territory on every piece of furniture in Auntie Lissa's house (Sorry again for that:0/). We were also blessed to have Marrieta in our lives who helped with everything during the move. She also has been so wonderful with Amelie and has often over this past year been single-handedly responsible for helping us maintain a sense of order and security amidst the craziness of everyday life, we will miss her dearly. Audrey, (who shaved her head earlier in the year to raise money for Leukemia research), generously agreed on short notice to come down and help us out during our first week here in California. Our moving truck broke down and was delayed almost a week and showed up Thanksgiving morning, so she graciously gave up her Thanksgiving to help watch the kids while we moved in. She will also be sorely missed by all of us as.

And then of course there was "Uncle Tas" who arrived in superhero form, in a new black "race car," thoroughly impressing his nephew. In addition to just looking so darn cool, he also came bearing a toy toilet which opens and has green slimy goo on the inside which is intended to be prodded and manipulated against the edges to make the sound of "pookies."(family name for farts). If the race car wasn't enough to make Tas seem like a superhero to Casper, the "Pookie toilet" definitely did it. In fact, that toilet was a hit throughout the household, and even last night (a month later) as I sat watching a film with Spencer, I had it in my grasp, and peripherally enjoyed the sounds emanating from it as I watched the TV screen. The TV incidentally, along with all other electronic equipment was installed by Uncle Andy, who was also present during the big move-in. Uncle Andy, the silent magician, who stealthily creeps around fixing, building, installing, doing 100 jobs without anyone really knowing, we are additionally truly grateful for his unique skills and constantly under-appreciated generosity.

Gosh, this sounds like an Oscar speech, but it really was quite the production getting here to Ojai. So about two days after we arrived, we took Casper to Santa Barbara for his first treatment at Cottage Hospital. In addition to monthly visits for intravenous chemotherapy, every three months he is scheduled to be sedated and have methatrexate administered intrathecally. The staff was so good with him, that after he woke up from the sedation, Casper didn't think he'd had anything done to him. It was only later that night while he was in the tub when his hand discovered the band-aid on his back, that he looked up at us with a puzzled face!

Both the children are now officially in "school." Casper is attending an adorable pre-school called Monica Ros which is located up in the Oak groves at the base of the mountains. Amelie is not quite as fortunate yet, Monica Ros only accepts 3 year-olds and up, so as seems to be the trend right now, she's getting the short end of the stick and attending Noah's Ark pre-school which is located at the back of the Methodist church across the street from the grocery store and pharmacy. Despite it's less pristine location, both kids seem to be lucky enough have lovely teachers, and are adjusting well. Amelie is turning into a very sweet and spunky toddler. She loves to dance, and has taken a special liking to monkey's, so she carries a little Curious George doll wherever she goes. Casper's school just put on a Christmas performance on Friday which was so amusing and poignant, I found myself laughing and crying through it. Santa showed up at the end, and asked the children if they had been good. One little voice rose up projecting above the rest and the room got silent. The voice said, "Hey, I was being nice [this year]...but...I was being mean to Amelie at home," and the whole audience broke into laughter.

So that's about it, I don't even know if anyone really checks this page any more since the recent updates have been few and far between. I suppose this is also thankfully because at this point things are going well, and we just continue to hope/pray that the New Year brings continued good health. We appreciate everyone who has been interested in Casper's journey. We love comments too, it helps me think I'm not just writing into a personal diary:0). Happy Holidays everyone, and we'll be in touch in the new year!!!

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.