...apologies for the delay. Rogan is back!...and we have been loving it. She completed her 1st course of chemo therapy on 9/1…and since has had a 2 week break off all chemo drugs, particularly the steroid [which was causing all the grim side effects]. Within 24 hours off the steroid, she began to come back to life…played by her self, smiled and finally laughed... for the first time in 3 weeks! It is wildly unnatural and surreal for your own child, of a mere 19 months to go so long without a good laugh… and equally emotional to have her return to her self… throw a new born in the mix and the emotions at the Crawford house are off the charts.
We are very relieved that she has been responding so well to the treatment. It is hard to believe that at the start of August she had so much Cancer in her bones that she couldn’t walk, or produce her own blood cells. Regardless of how well she is responding she will still run the entire 2.5 year treatment, in case her body begins to re-generate the bad cells again, or if there happens to be 1 or 2 cells hiding out some where. Whatever it takes to make sure this goes away and stays away!
At clinic day__9/8 her ANC count [bacteria and virus fighting white cells] were not high enough to begin the second course of chemo… so she got an additional week off; which was fine… don’t get me wrong, we are terribly anxious to get these 2.5 years of treatment behind us. At clinic this Monday, 9/15, her ANC was high enough and we were able to start her second course, CONSOLIDATION. This course is focused on the central nervous system, where she will be receiving weekly spinal taps to test and treat the spinal fluid… continue to receive the IV chemo each Monday via her central line, and receive 1 other chemo drug orally, at home each day. Below is a sequence of her from this Monday, post opp… again they put her under with anesthesia via her central line [we call it her Toobies] and administer the spinal tap. She also got a dressing change. She woke slightly groggy, had a quick cry, showed everyone her Toobies, ate a Numuna… and felt better.
…now that Rogan can stand again and get outside a bit, Mama and auntie Tam Tam have been playing dress up. Here she is in Roxy
I have been forcing the premature transition from A-mo [Elmo] to Surf’s Up and big kid movies. With Rogan’s new hair-doo, I’ve noticed a striking resemblance between her and the baby penguins.
Rogan is just now starting to walk again… her legs are small and weak from having gone so long without use… and she’s put on 10+ lbs… so she is very cautious. It started with her pushing her stroller, and we were able to get her to take a few solo steps [but I had to tempt her with food]
She loves A-mo and Cookie and taking them for walks with Auntie.
The city is replacing all the gas and water lines in our neighborhood, so they are trenching 20’ holes and piling up gravel everywhere. Our street looks like downtown Beirut… but there are plenty of tractors for Rogan’s enjoyment.
One worker made the grave mistake of honking for her and now she is hooked. She calls them bee beets and is obsessed with just sitting in her stroller and staring at them go to work. She asks for them at 7 AM… and had a complete meltdown when we came home late one night and I wouldn’t take her to say good night to them. I lost that battle and was forced to tour Norfolk Avenue in the pitch black through maze of open man-holes and 20’ excavation sites. But we said good night to all 3 and that was all she needed. I will ask our doctor tomorrow if OCD is a common side effect of the treatment.
Here is Rogan in her stroller, singing a Little Mermaid song, playing hide n seek and doing “Beetle face”. I don’t now how “Beetle face” happened, but she can now do a Crab, Cat, Cow, Owl, Snake, Fish… and we are working on Peacock and Monkey.
Rogan’s immune system is still down…but not in the extra red zone….so we have been able to get out a bit [still keeping her away from other people, especially kids and dogs] This is her first skateboard session at the Park City park. I bought her first lacrosse stick last night and we are shopping for snow skis for her today!
Friday, September 5, 2008
Sorry for the delay... we had our second child on Sunday.
_Coco Caldwell Crawford
_Sunday, 8/31/2008 8:15 AM
_8 lbs. 1 oz.
Mom went sans drugs...and Coco was slightly posterior... so the "all smiles" pic is very deceiving. Casey is gnarly.
Rogan loves sister Coco and they like to watch Elmo together... Dad is over Elmo and can't wait until she graduates to "Surf's Up" and "Finding Nemo".
Rogan made phenomenal progress during week 3 & 4... maintaining "best response possible" and "highest cure rate" bracket. Week 3 clinic day, 8/25, we were told to expect transfusions, possibly both red blood & platelets.... but her counts were stable and she didn't need either! ... so with just vitals and a blood draw, no surgery... that was the easiest clinic day to date.
The side effects from the "chemo cocktail", specifically the steroid, have manifested full force:
_raging appetite, weight gain & water retention
This is how chemo makes you feel:
...still no walking due to:
_bone pain from being overcrowded w/ Leukemic cells to going hollow
_muscle pain from the roids
_weight gain & water retention
....resulting in plenty of Elmo hours logged:
The hair lose was mounting, so we were forced to do some maintenance:
...and then was force to do even more maintenance a day later whilst side tracked by a Cafe Rio burrito [raging appetite]
CLINIC DAY_Week 4_9/2/2008
Epic news Tuesday as they drew prelim blood and saw that her counts were up from last week!... meaning she is starting to make her own cells again. In particular, her bacteria fighting white cells [ANC]...so they hope she will be out of the extreme danger zone in a couple weeks! This is best case scenario and the doctors targeted goal. We then needed the 1st month bench mark bone marrow aspirate and spinal tap. Mama went to feed Coco and Papa Roger and I were left with the daunting task. This one is gnarly and doesn't seem to get any easier...as you must carry her into the operating room [O.R.] which is bright white, well-lit w/ all sorts of equipment and docs and nurses everywhere... [plenty intimidating in itself]. I hold Rogan and the doc injects anesthesia directly into her central line in her chest and she goes limp and falls asleep within 3 seconds. I lay her down, she gets oxygen via mask, and they go to work. It was subsequently followed by 2 grown men crying and then some good meaningful father / son connection and conversation. 30 minutes later [seemingly hours] we were both in recovery with Rogan. She was on her side and came to... asked for baba and numana. Big sigh of relief. The bone marrow went to Seattle Tuesday for an extra-microscopic review.... we will know this afternoon, Friday 9/5.
...so this first month [INDUCTION] has been targeted at the cancer in her marrow....where it lives and grows [metastasize]. This second month [CONSOLIDATION] will be a new chemo-cocktail targeted at her central nervous system...in case there is any cancer in there, which we believe there is not. She starts this coming Monday, 9/8 and we are fired up. In the meantime, she gets an entire break from ALL chemo drugs!... even the steroid. Which is ideal... within 48 hours of being off the steroid we saw a drastic improvement. She slept through the night without snacking...woke up without crying, smiled often, took a bath without bawling, laughed for the 1st time in 3 weeks and even crawled for the first time in 3.5 weeks. A wild world of difference. That was a tear-JERKER. Captured below is evidence of the REAL ROGAN... off steroids and loving it.
...as I type, Rogan is on the floor, reading a book by her self [which is unprecedented]...doing her "shoulder shimmy" to the back ground beats. [insert tears of pride and joy here] She is a grandchild to Charles Mason Crawford III, that is for sure. I am missing him a lot nowadays...so thank you very, very much to the special friends and mentors in my life who are helping me fill in that giant gap.
Thanks again to all our friends and family for the over the top love and support. LOVE & RESPECT.