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.