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.
Saturday, February 11, 2012
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