CONSOLIDATION!

...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.

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…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

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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.

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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.

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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.

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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.

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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!

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Week 3 & 4

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.

_20.5"

CLICK HERE TO VIEW PHOTOSTREAM

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:

_irritability

_raging appetite, weight gain & water retention

_restlessness, insomnia

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.

Week 3

Fascinating...right?

Week 3 can be classified as “difficult”. Our Monday 8/18 clinic day was a relative breeze, with no surgery or transfusions….no surgery scheduled for this coming Monday 8/25 [due to her good 7 day benchmark] but we are expecting transfusions…potentially both red blood and platelets. These are not painful…just time consuming and any time in the hospital is not fun.



All the meds have officially set in and are manifesting their expected “side-effects”….the steroid in particular…which she receives twice a day. She’s not yet “Chucky”…but let’s put it nicely; if she is not eating, watching Elmo [A-mo] or going on a walk [Wok!]….she is NOT HAPPY. As mentioned earlier, the steroid has also made her appetite spike off the charts….big carbs in particular. I was not there to witness it, but it is claimed that she ate an entire Pizza during one feeding. Fortunately or unfortunately, depending on who is on bathroom duty, she still enjoys her veggies and fruits...particularly frozen peas in a cup…which she can be seen above, sharing with Big Bird [who by the way, Sesame Street mgmt needs to re-staff whomever does his voice…because it is creeping me out] She feels 10 lbs heavier, has a bit of a double chin…and towards the end of the day her belly begins to look unnatural.



…still no walking. It has now been 42+ days…and we are getting anxious. Our doctors assure us that she will be cruising soon, but it is still very difficult to accept…and it obviously has her frustrated. We did get her to stand a bit in the beginning of the week at her new stove…making, you guessed it: Pizza. [FYI, please don’t say that word in her prescence…because she will demand it, regardless of the time of day.]

On the brighter side, she is virtually 100% potty trained on both fronts. A slight case of “thrush”…which is believed to have made things slightly painful down South, is to thank.

She is holding on to her hair so far…so hopefully that means that all the chemo is too busy killing the Cancer to be bothered with the hair.

Move over Mom & Dad, Elmo is now sleeping w/ us too. [fortunately we were just gifted a king size bed! Thank you!]

Special thank you to our Norfolk Avenue neighbors for the nightly meals…that is a terrific program and is so much appreciated.

...and a huge thank you our friends and family for all the fun gifts. Some days, it is tough to get just 1 laugh or smile out of her. Above is a rare smile captured upon the arrival of her new kitchen set.

...and the BIGGEST thanks to her Mom, Casey...for so gracefully dealing with:

_her "roid induced" demands

_"roid induced" fits of whining and crying 

_midnight trips to the bathroom [seemingly every 10 minutes]

_midnight trips to the fridge [seemingly every 10 minutes too]

_and just plain clinging like glue to Mama

You lead by example.  I LOVE YOU.

...so we have been "out-patient" since Thursday evening 8/7.  The more days we get away from the hospital and her IV chemo, the better she does.  Above is a sequence of her taken on Sunday 8/10...listening to dancehall Reggae w/ Dad...enjoying it, and dancing...plus an interview with Dad, Mom and Auntie CamCam regarding teeth brushing, Sesame Street and her binky... [which we call "JaJa"...and Rogan calls "GaGa"].

Home is much more enjoyable than our hospital room and it has been nice to take a break from "Elmo in Grouchland" [except for the opening scene....a montage of Elmo's ode to his blanket....which is amazing].  We have a wonderful home-nurse named Lynn, who is on-call on an as-needed basis.  She helped us change her dressing Friday night....which was just as rugged as the first time.  Rogan was only sick once and the most stressful week is now over.

On Monday 8/11 we were back in the hospital at 8 AM for our scheduled "Clinic Day"...another morning spent NPO [fasting]....which is always tough for Rogan.  We had blood drawn and then went down stairs for her procedure....where she is taken into the surgery room and given anesthesia through her central line, immediately falls asleep [scary] and is handed off to the doctors.  Over the next 30 minutes she had the following work done:

1.) bone marrow aspirate

2.) back poke [test and treat spinal fluid]

3.) change central line dressing [thank heavens!....better you than me, doc.]

She woke up groggy and angry...yelling for a baba [bottle] and a numana [banana].  She proceeded to crush an entire large banana in 20 seconds and wash it down with a pint of milk, Cheerios and cranberries. [one of the drugs she is receiving twice a day is a steroid...that attacks the "quick-multiplying" Leukemic cells...and also makes her ravenously hungry] 

After recovery, we were back up stairs where Rogan received her IV chemo via her central line. Her blood draw showed that she was low on platelets, so she received 1 bag via IV. We did not leave the hospital until 2:30 PM.

Home since Monday afternoon 8/11....the greatest challenge has been administering her combination of 4 different drugs orally. Despite being ravenously hungry and eating like her Dad.... her "distinguished palette" can pick it up in most everything we have tried to disguise it in....and it has now become a full-time job in itself. Aside from Sesame Street in her high chair and staring at the Tractor on our street...pretty much everything else seams to be a nuisance to her.... including bath time!...which was once a favorite. The doctors have warned us of this inevitable "roid rage".

…wanting to keep an extra close eye on her, she has now joined us in bed...which Dad has aggressively spent 19 months attempting to avoid at all costs. She likes to sleep completely perpendicular to us...usually her sweaty head in Dad's neck, swatting my face every time I move and her heals in Mom's belly, kicking like Bruce Lee. At approx 3 AM each night she wakes up and goes on another “roid induced” eating binge. 2 nights ago she woke up and ate 2 pieces of toast with jam and a whole milk bottle….last night she ate 2 entire bananas and a whole milk bottle.

GREAT NEWS: On Thursday 8/14 we got a call back from her doctor on the results of Monday’s bone marrow aspirate….it showed no production of Leukemic cells, which is the best news possible for her Day 7 benchmark and also puts her in the highest “cure rate” possible.

WALKING: It has now been approximately 19 days that Rogan has refused to walk.  Again, our doctors attribute that to the Leukemic cells in the bone marrow, “crowding out” the space and creating “bone pain”. 2 bone marrow aspirates and 2 spinal taps only 7 days apart can’t help either. We hope that the chemo will knock the Cancer back enough in the coming week to where the pain is relieved and she takes her first steps again. Before she got sick she was almost running…and Mom & Dad had taught her to kick & trap a soccer ball and do a “Sumo step”….[where if you say “Sumo…..step!” she will balance on 1 leg, then slam the other down and laugh.] Her hair is beginning to thin and fall out a bit…at approximately the same rate as Dad’s…so we may be shaving our heads at about the same time.

NEW BABY: Rogan’s new brother or sister is due 8/30. Mom is feeling great and, I won’t go in to specifics, but things are progressing as scheduled and we are looking forward to the newbie. A full moon and a cold front are on the horizon…so stay tuned. The Canyon is closed for a few nights this week...so we are hoping to avoid going into labor on one of those nights and being forced to off-road it over Guardsman’s Pass. If you are reading this, please help us “manifest” a delivery when the Canyon is open and my sister is still in town.

THANK YOU: …to all of our wonderful family, friends, neighbors and co-workers for all the positive vibrations, prayers, love and support. We could not get through this without all that you have done for us and are eternally grateful. Much love & respect. 

DIAGNOSIS

Rogan began to limp....which, in a few days, progressed to her not wanting to walk at all.  When nothing showed on the X-Rays we went to Primary Children's Hospital on Saturday 8/2, for answers. She showed no other symptoms of illness. Blood work came back and her counts were off...indicating the possibility of some form of Cancer. Rogan has never been ill or been to the hospital for any reason...needless to say, the environment, staff and administered procedures during our first 24 hours, were NOT well received. That first night an IV was placed in her foot, her vitals were monitored every 4 hours and blood was drawn from her arms 3 different times. I'd like to commend the nurse who was on that night...he had the magical ability to strike the vein on the first try, each time despite her chubby arms and her resistance [she is strong]. Unfortunately, the nurse who was on the following day did not have the same magic touch and I was forced to make an executive decision and "re-staff". Sunday AM was spent recovering and that afternoon Rogan was forced to go NPO [fasting...not well received either] in hopes that she would go into surgery. They could not get her in, so she was able to eat that night and Monday AM was spent NPO again. She went in for surgery at 12:30 PM...and they were able to get the work done in 1 hour & 30 min:

  

1.) Bone Marrow Aspiration & Biopsy: a special Biopsy needle inserted in her hip, though the bone and into the marrow [a sample of marrow is pulled and analyzed to measure the Leukemic "blast" cells and achieve a "base-line" for the disease. The "blast" cells have "crowded-out" her marrow, prohibiting the production of the "good" blood cells and causing bone pain...which is why she is not walking.] 

2.) Central Nervous System [CNS] Prophylaxis: basically a "spinal tap" or we prefer "back poke". Test spinal fluid for Cancer cells [it was clear]....and also treat the spinal fluid with a Chemo injection.

3.) Indwelling Catheter [Broviac]: a special tubing inserted into a large vein in the upper chest. The catheter is tunneled under the skin of the chest to keep it firmly in place. The external end of the catheter can be used to administer medications, fluids or blood products or to withdraw blood samples.  The catheter must be flushed and filled each day [to prevent clotting]...and the dressing must be changed once a week to prevent infection. The dressing is an airtight adhesive and is painful & traumatic on both Rogan & Dad to remove and clean. No swimming : (

Rogan came out of surgery and was fine....within 2 hours she was relatively happy, eating ice [new obsession] and watching Elmo in Grouchland [another new obsession].

For the next 4 days we stayed in her hospital room and did the following in order of frequency:

1.) cared for her and became educated on her illness

2.) watched Elmo in Grouchland

Big thank you to all of our family and friends for the love and support. I am not a "blogger", Oncologist or Hematologist....but I am becoming proficient at all 3....so stand by and please send us positive vibrations.