4.28.2012

Up and down


This pic was taken yesterday afternoon, when I came to stay with Becca for the weekend.  She's looking pretty good, sitting up, talking more, and giggling a lot.  She is now able to be off the monitors while she is awake, which is four less wires tethering her, and it allows for a ton more hugs and cuddling.  I really enjoyed climbing in bed with her after Ethan left so that we could watch Wall-E together while snuggling.  As Becca put her head on my shoulder, and I stroked her hair, my heart felt the happiest it has in a long time.  Those few minutes were the most blessed I've had this week.  

Becca wanted to go to bed pretty early (around 8:45), and I was exhausted, so I didn't fight her.  Unfortunately, our attempts at sleep were thwarted at every turn.  You see, Becca's body decided it needed to rid itself of extra fluid all night long, every half hour (literally), so we got up to use the bedside commode twice an hour until 6am, when we awakened for the day.  In addition, every time I helped her back in bed and got settled in my "bed," her leads would decide to lose contact and honk loudly until I jumped up and tried frantically to rearrange them and quiet the alarms.  The final element working against our sleep was the fact that our room has "the tube" running through its ceiling.  This is the transport system for medication coming up from the pharmacy, and it causes loud rattles, rumbles, and bangs at all hours.  We SO need a new room... and preferably one with an anteroom so that it's darker for Becca.

Today Becca has a little more energy, but she's looking pretty pale with dark circles under her eyes.  She is anemic, so they started her packed red blood cell transfusion a couple of hours ago.  Hopefully, this will perk her up a bit more, although the pre-meds made her awfully entertaining this afternoon.  I am savoring her giggles and loquacious ramblings, as she was so very quiet during her long stay in the ICU.

Unfortunately, the inevitable hair loss is beginning.  The last time we went through this, it didn't bother Becca at all, and I was the one who cried as I shaved off her beautiful locks.  This time, I'm worried that she is older and it will affect her self-concept a little more.  Last night, she did not seem concerned about losing her hair, and she even thought that maybe the hair fairy would bring her a lollipop.  Today, though, she confided that she didn't want to lose her hair.  Hopefully, Becca can get out of contact precautions soon so that she can see other bald children in the playroom, and she will realize that other kids here are getting chemo and losing their hair, too.  Luckily, she is not staring in the mirror at herself, so it is not a constant reminder.

On a positive note, Becca had a manicure last night, thanks to my talent and the kind donations of a crazy amount of nail polish and nail stickers.  Today, she had an arm and leg massage, courtesy of the holistic medicine department.  Becca is one of the most ticklish people I know, so I wasn't sure how it would go.  Let me just tell you that Kate was awesome, and Becca's looking forward to her coming back.  At least she's getting pampered in little ways.    



At Loveland Elementary School, they are selling really cute Becca's Believers t-shirts so that staff (and eventually students) can show support to Becca in her fight with leukemia.  If any of you friends and family would like to purchase a shirt (white shirt with pictured design), let me know the sizes, and I will place the order for you.  They are $10 each, and you can get the money to me later.

Only two weeks until the Butterfly Walk for CancerFree KIDS... an event that our family looks forward to every year!  I wasn't up to recruiting a big team or lots of donations this year, but WOW!  Our Becca's Believers team is at 62 members right now (the second largest team), and our total of donations is over $3,400 as of last night.  Thank you so much to those of you who have joined the team or donated to such a worthy cause!  A special thanks to Kelly Hundley, who is acting as team captain this year, although I will most likely be at the event.  Look for communication from one of us regarding details for the day.  There's still time left to make a difference for cancer research!  Visit http://www.active.com/donate/2012butterflywalk/TKniske1 and click on the Register for this Event link to join us, or make the appropriate selections in the Make a Contribution box, and click the Continue button.

Please cross your fingers for less frequent potty trips tonight, as well as the last dose of chemo for the month!
TK

4.27.2012

ummm sleep

We paid some of our sleep debt off last night it would have been uninterupted if Becca were not getting so many fluids. It was grand for us both, Becca was fever free all night long. Lily came to visit last night as Trisha and I met with the BMT folks. Dr. Grimley (kind of an unfortunate name for a Doc) is going to be our new primary Doc after we finish the chemothoerapy part of our cure, and enter his world of transplantation. We got a better idea of what to expect throught the BMT process, it goes something like this: finish chemotherapy (2-3 months), once in remission go through consolidation phase (about 1 month), go to BMT side of hospital and get oblative chemo where all Becca's bone marrow is destroyed forever (couple of weeks), get transplant and live at hospital while new marrow is stirictly observed and nurtured (3-4 months), assuming nothing bad has happened we go home under house arrest (6 months)and go to hospital 3x week for check-ups. We are hoping to have a good long string of quiet weeks ahead of us as her chemo cycle is done tomorrow night and nothing to major planned.

4.26.2012

SO close

We have a major sleep debt to pay. Becca woke at about 3:30 in the morning and battled fever till about 10:00AM. She is fever free for the moment, it seems to start every 12 hours between 3:00 and 5:00. I am thinking has something to do with the Ara-C she gets at 11:00. Other that the fevers she is doing great, but man do the super high fevers really flatten her. We recieved a copy of the HLA test results. They were not what we were originally told. It turns out that both Trisha and me are both a 9/10 match to Becca. That does not make us a cantidate, they want and expect to find a 10/10 match. Lily was only about a 8/10. What was very interesting is that hubby and wifey were a 9/10 match to eachother? Only one little protein on the 6th chromosome was different. There has been a fair amount of interesting research done on this part of the 6th. The "stuff" on the 6th chromosome seems to play a part in mate selection in a scent(ual) way. Oddly it seems that women prefer the scent of men that have less "stuff" in common with themselves. It also seems that men did not warrent any study of preference, I suppose it would give data similar to asking the question "who likes pizza?" to a frat house. Despite the odor of being a 9/10 HLA match I must have done something right.

4.25.2012

Stoned to the bone

Ok watching a little girl off her rocker, high as a kite and stoned to the bone is pretty darn cute in some ways...till about 11:30 PM. At 1:00 AM it is much less entertaining. Something in the extensive list of drugs she is getting is really making her "Loopy loopy loopy, I'm so loopy hehehehheeehheeee" and wanting everything "FORrrr FREeeeeeee?" and initiating the subtle probe of "WHAT THE...???hehehee". I gave up trying to get her to sleep at about 1:30 and put on my head phones and went to bed. The nurse said she kept going till about 2:00. it is now 10:00 AM and she is still very much asleep, my sweet little rave girl. On a more clinical note, she had a fever outside of her Ara-C time frame which has spawned a new round of blood cultures and a trip to radiology tomorrow for a waist (or waste) up CT to look for fungal infections. All in all she is doing very well and responding to the chemo as expected/hoped. We are hopefull that she will get weaned from the steriods and narcotics without much trouble and get to her normal appearance again soon. She continues to chew through platelets and is also getting a unit of the red stuff as well. Time to wake up the party girl.

4.24.2012

Back in the A.5.S.R.

Back In The A5S Room Oh Let Me Tell You Honey Hey I'm Back! I'm Back in the A.5.S.R Yes, I'm Free! Yeah, Back in the A.5.S.R HA HA! We do know how lucky we are to have made it over the hump in the ICU and back to the oncology floor. Lucky in the sense that we got out of the fire and into the frying pan in some ways. A5S is much more relaxed were they can be, remember the cultural differences between units I mentioned earlier. Yesterday, Brian "The Music Man", came to our room in the ICU and played some great tunes. This is a service that Becca really loves, even if she is sometimes stoic about it. Brian and a couple of other great folks actually get paid to go room to room and sit down and jam with the kids. Often it is just Brian and his guitar strumming out some relaxing vibes other times he breaks out a few instruments for the kids to bang shake or rattle along with him. Poor guy has been given homework to brush up on his ABBA so he can play Dancing Queen. I wonder what he will think of my Beatles spoof? Becca had a mildly crumby day yesterday with regards to her response to chemo; fortunatly the next few days feature much lighter chemo, so she should be much more active and playful. I see some games of war in my future (she cheats btw), no old maid, she refuses to play anymore due to anxiety about getting stuck with the "old maid". That girl hates to lose, if only cancer were a card game. EK

4.23.2012

Moving Day!


Overall, Becca had a good day yesterday.  She ate 3.5 popsicles in slushie form, played a little with Nana and Papa (and even giggled and smiled a bit), then took a four-hour nap in the afternoon.  She's still having trouble hanging on to those platelets, so she received another set, as well as some packed red blood cells in the evening.  She spiked a fever during the transfusion, despite the Tylenol as a pre-medication.

Unfortunately, Becca felt nauseous and very sad in the late afternoon, and after vomiting, she didn't want any more popsicles.  She kept stroking the picture of Lily and tearing up.  She wanted to hear Lily's voice, so we called around dinner time to talk.  This is so difficult emotionally on all of us, but especially the girls who are so close.  I struggle to see her furrowed brow and tears, and I just want to pick her up, hug her, and tell her it's going to be okay...

Even with all of the sedatives, Becca didn't go to sleep until around 2am.  During those hours that she was wide awake, she kept the nurse on her toes by pushing the nurse button over and over, in addition to waking me up by turning the lights on and off with the button on her bed.  One time, I woke up to her standing next to her bed, which honestly freaked me out.  With all of the wires and tubes, I was shocked that she was able to get up on her own.  That girl certainly cannot be kept down!

This morning, she was again febrile, but we got the good news that we will be able to move back to A5S today (if they have a bed available)!  Becca's getting platelets right now, as she was quite low again.  Her WBC were at .3, and her ANC was at .01.  That chemo is sure working!  She's interested in eating, too, and her diet this morning consisted of the following:

  • half a can of Sprite (lemon pop)
  • a Keebler Jumbo Fudge Stick
  • sips of a Capri Sun Roarin' Water
  • a marshmallow PEEP
She's requesting chicken fingers and French fries, so once the NPO order is lifted, we will get those delivered.  It's so nice to see her up, playing with a Squinkie castle and some Tiana Polly Pockets (thanks Uncle Rick and Aunt Louisa), and eating and drinking.  They just turned down her oxygen from 3 to 2, and now to 1, and she's still hanging in the upper 90s for her pulseox.  

Ethan's heading back midday today - he had strep, which oddly coincided with the opening of spring turkey season.  Hmmm...  Lily is sick, too, and we think she may have been the culprit that passed the strep along to Ethan.  Please continue to pray for health, strength, and good news for our family... I think the prayers are working!
TK

4.22.2012

Still looking up

Becca continues to rally; she is now on a normal canula at a low oxygen setting. Right now we are getting her out of bed about every fifteen minutes to pee, she just received her last dose of lasix this morning, and had her catheter removed overnight. Now that her A-line, peripheral IV, and her catheter have been removed, she has three fewer possible infection sites. If she continues on this track, we have a shot of going back to A5S tomorrow. Any one seeing her for the first time would gasp at the number of wires and lines running in and out of her, but she now seems greatly less encumbered to us, and we are grateful for the improvements. She is still not herself and is pretty down, but I did get a smile and laugh out of her as she dug her index finger into my ear canal yesterday. Great feeling to see her smile! Oh, and if you're wondering what her first words were after waking up... "You have blue hands" to Trisha, as she had blue gloves on, and later, "I'm NOT a princess," in response to a nurse that had told her, "Sorry, princess, we need to move you up." She just had an orange slushie (smooshed up popsicle in a cup), and she seemed to really enjoy it. After all, other than mouthcare, it's the first thing she's had to eat in about ten days. She's requesting Great Nana's cookies, so Trisha's grandma has a little work to do today. I spent Thursday evening with Lily and picked up a bug, presumably from her, and now must leave the hospital. I am going to stop at a "Doc in a box" (little clinic) to get checked out, though I am pretty sure it is just a mild virus. It is always something. Hopefully Trisha does not catch it as well. I am hoping I can get back here on Monday to resume Daddy Duty for Becca.

4.21.2012

No more tube

Becca is now off the vent!!! and doing great, keeping her saturation in the mid 90's with a bit of support from a canula in her nose. The extubation was very quick and easy, and Becca did great. My guess is that we will be in the ICU for at least another 24hrs for observation, but hopefully not much longer. Sadly, business is a little too good on the oncology floor; they are at or over capacity. We hope that does not delay our return to our "home" department. One other bit of news was that none of us are a great match for Becca. Trisha was the closest with 5 of 6 alleles matching. She could be used if it is an absolute necessity, but they have very high expectations that a closer match will be found. Her blood work looks good, and she is over the tumor lysis hump. Her WBC dropped like a stone again to the low single digits overnight. A very good day here! Thanks for all the positive energy, kind thoughts, healing crystals, and divine prayers... they seemed to have worked. EK

Extubation day

Becca gets off the ventilator today. She is pretty worried about it and does not want it taken out, but I think she will forgive us is a couple of days. Last night her hands were busy busy; I put a small rubbery elephant in her hand and she messed with it for hours. She is more awake for longer than ever before, though we are joyful, it is harder to see in some ways. She is clearly positionally uncomfortable and is moving her arms and legs all over the place. She also seems a bit depressed, with furrowed brows, and is tearing up during some of our conversations. We will give another update later today after we she how she does off the vent.EK

4.20.2012

Keeps getting better

Good things are happening at the hospital. Becca's lungs continue to rally despite some episodes of trying to vomit from the chemo side effects. Her settings are about as low as they can go on the vent and I must assume that extubation is the next step. She is much more emotionally at ease despite the lower sedation. When she wakes Becca is clearly seeing, understanding and responding in a lucid and calm manner. Lily has been very open and honest through this about when she felt like she was able to see Becca. Recently it is has been a no but this morning after talking to becca on the phone and getting and "I love you too" from Becca, Lily felt like she was more than ready. One little hang up is that Becca is in "contact isololation" due to a positive culture when we first were admitted, despite every culture since being negative and her recieving a lifetime supply of every spectum of antibiotic she remains in isolation. This is thanks to the, as some one put it, the "OCD handscrubbers in ifectious disease". I presume that it is cheaper and easier to make rules than it is to make individual decisions. I contacted her oncologist to see if anything can be done to grease the skids and get Lily into the room without compromising patient saftey. So Lily was allowed to stand unmasked and ungowned inside the threshhold of the open door??? Lily has planned to see if she fits into one of out large suitcases and make a covert entrance bypassing the nurse ratchet of the moment. Never the less, it was still a good visit and Becca really perked up and responded to Lily being there. It was very touching to see and a reminder of how comforting they can be for eachother. EK

4.19.2012

Looking up!

Sorry, you'll all have to endure my dry and boring writing tonight, as Ethan is spending the evening at home with Lily.  I'm glad you are enjoying his humor and writing... they are two of the reasons that I fell for him so long ago.  

Ethan told me on the phone this afternoon that Becca was doing really well at a PEEP of 6 and a rate of 35%, and that she would be starting on the CPAP. She was also responding to questions he was asking, working with the physical therapist, and trying to talk to him.  I was so excited to see a response from her that I think I flew down the highway at 95mph!  Good thing Ethan got me that fast car... even he was surprised at how fast I got here.

Finally, I am able to see those big, brown eyes again, and at last, she is interactive!  She has the ability to be one of the most cantankerous little stinkers ever, but man, have I missed her!  Becca was finishing up with the physical therapist when I arrived, and she noted that Becca has lost about 5% of her range of motion.  Hmmm... doesn't seem so bad, but we'll see what that means when she is mobile again.  Apparently, she had some bouts with loose stool today, and it's quite an ordeal to get her cleaned up.  The third "big change" hit almost immediately when I walked in this afternoon, so of course, Ethan bolted. As the nurse and PCA wiped and repositioned (and wiped more), I helped to keep her calm and guarded her tube.  She told me that she needed a tissue, which most likely resulted from feeling the feeding tube in her nose.  I massaged her legs with baby lotion (mmmmm!), and continued when she nodded that she liked it.  The best part of the night was when I told her, "Love you, love you, love you" (our little ritual), and she mouthed those same words back to me.  I simply melted.

The doctors are pleased with Becca's progress today.  She is breathing on her own, her sats are staying up, she's responding to our questions and trying to communicate, and she is calming herself after being disturbed by us.  In addition, she is responding to the chemo.  Her WBC went from 55 to somewhere in the 30s (don't remember exact number), but it looks like she's headed in the direction of tumor lysis.  They have increased her fluids and given her Rasburicase to try to combat the syndrome, and the docs are watching her lab numbers for calcium, phosphorus, uric acid, creatinine, etc..  

I'm so anxious to see what she says and does tomorrow!

Chemo morning

Well they have run out of access points now that they are adding on the chemo, but they decided to drop off the IV cipro and bactrim to make room, now that they feel better about infection. Just as soon as she has gotten her fluids inline, they are bumping them all up in preparation for the havoc that the chemo will cause with her electrolytes and various cellular debris. So restarts the tightrope of keeping her plumped up with fluid and controlling seepage into her lungs and backtracking resparitorially (if that is a word). Her platelets are low again and showed some blood in her urine again. The Docs had lowered her goal for platelets but they have decided to give her another infusion because of the urine. It is always something.//

Becca's sedation is also being lowered again, along with her vent settings. She is doing very well on the current settings of PEEP=6 O2=35% and keeping her saturation up in the mid 90's. As far as sedation goes she is becoming alert more easily and communicating a bit. Last night she told me, "I'm hot," not that it was audible, but I could clearly see her mouthing the words. I painted her fingernails purple with lime green polka dots; I thought it was a touch Alice In Wonderland. I am sure that Becca feels "down the rabbit hole" about now. I sure wish I knew what was going on in her mind. Thanks for all the kind words in your comments, we both look forward to reading them.

4.18.2012

Chemo resumes

Tomorrow morning Becca will resume chemotherapy. Dr. Absalon (her primary oncologist) and the rest of the oncology team have decided to go to a protocol more like one used for a first cancer diagnosis of AML. Ara-C is still used but at a 10-fold lower dosage for a longer period. New to us is a drug called Etoposide. The mechanism of this drug is a toxin that impacts an enzyme with a very, very long name, that causes the DNA to unwind. This enzyme is used more heavily in cancer cells. The chemical makeup of Etoposide is derived from one of our local flowers. The American May Apple (Podophyllum Peltatum), which Lily K. can tell you, has its flower on the underside of its leafy canopy so it can attract ants and bugs as opposed to most other flowers that face skyward attracting flying insects. Thank you, Nanna... another useful fact I learned from you during home school. //End of paragraph. FYI, the ipad interface does not transfer any spacing or breaks when I publish.

During afternoon rounds today, my father was visiting and we got a pretty good scare. Becca woke up coughing, which is pretty normal, but as they were suctioning her, she got really upset and very alert. I was partially on the bed looking into her eyes and reassuring her, while trying to hold myself in check. I could see her mouth moving trying to speak/yell the word "DADDY!" That was also the last thing we heard her scream before they gassed her and intubated. I am still haunted by this.//

I know that not being here as often is very difficult for Trisha and Lily. Girls, I love you like crazy and wish a great number of things could be different and that we could be a whole family right now. I also know that the burden of not being able to stay with Becca is far greater than that of being here. As a family, we still have the strength of the sum of our parts regardless of any barrier or distance. I have two very strong daughters who have faced more demons than any kid should ever need to, and despite all the crap they have gone through, still retain their grace, compassion, and innocence. Trisha is a "tiger mom" but the soft cuddly plush kind, one of the kindest, loving, and selfless people I have ever known. I almost forgot to add forgiving, a bit of a prerequisite with me around; oh yeah and a gorgeous-super-sexy-rock-star. But seriously, Trisha, I love you to the moon....and back. //end emotional open letter :)

what to call it?

Well it is kind of like government spending, is a reduction in the rate of increase really a cut? So it was with Becca's breathing last night. She had been doing much better and was being challenged and pushed by the Docs tweaking her vent settings. Overnight she began to struggle with keeping her saturation up and a chest x-ray showed the she was derecruiting somewhat [collapse of the aveoli (little air sacs in the lungs)]. The PEEP pressure that I have mentioned in the past is what keeps those sacs open during exhalation in a kiddo that is struggling like Becca. For normal lungs, this is done by the ambient air pressure. So lowering her PEEP closer and closer to normal air pressure is necessary to get her off the vent, but every tick down gives her less support. So I will call this a slight and specific decrease in the gross rate of increase, she is still getting better, just a bit more slowly. It looks like the oncology folks are going to restart her chemo today or tomorrow. At first, it will just be the Hydroxy Urea... remember that compound from a hundred years ago when we were first admitted? Begin digression... admitted? Jeez it sounds like a red velvet rope barrier should be involved, digression over. The Oncology team is currently discussing how to proceed with her dosing, specifically whether or not to lighten the dosages and extend the time or to use the tried and true sledgehammer approach. A rise in her white blood cell count, that dropped so precipitously, has begun to come back up rapidly along with her ANC. The small gift that this timing may bring is that she may be sedated for the worst of the symptoms following the administration. Something that just popped into my mind...I really hope she does not wake up bald. Father's fears of failing follicles force foreboding flights of fancy. Sorry I just needed to get some "f-words" out.

4.17.2012

4/17 morning

A full night of sleep for Ethan and Becca, mine was due to hers and the stealth of the overnight nurse, so thank you ladies. Today on rounds the Docs have decided to lighten up on the sedation and are going to change some of the ventilator setting to really challenge her the next couple of days. They have also set a soft goal of extubating in two days. This is very good news but comes with some anxiety as well. Best case senario is that she gets off the vent and goes onto a high flow canula without a great deal of agitation and fight. We are hopeful for this outcome but also know well her temperment when not getting large doses of steriods. I am betting on a fist fight but you never know. The director of the ICU, Dr. Hector Wong (I am sure there is a good story behind that name), we liked straight off but were not exactly sure why. As I spoke with him over the last week I found out that he is an avid outdoorsman and steelhead fisherman. These facts alone certainly raise my opinion of him and would give him a fine seat in the afterlife if only he would include wing shooting in his pursuits. We will be here for a while and I will continue to attept to show him the path of rightous shotgunning. We enjoy and look forward to reading all the comments left on the blog, even when it one of my lovely aunts reprimanding me for being overly critical of hospital bureaucrats. I assure you that we give ten fold the praise to the care givers when due, which is quite often. EK

4.16.2012

evening 4/16

The Docs decided to give Becca a try on the NAVA ventilator this afternoon after she fought the standard ventilator for a good long time. It was not a failure but she never really got in a rythem but was able to keep her saturation up for the most part. for the time being the "white coats" are going to switch back to the NAVA tomorrow for a few hours because it gives her a good respiratory workout and helps to stave off atrophy. It seems we are still heading in the right direction as far as her lungs are concerned. I spoke with her oncologist today about their plans for resuming her chemo therapy. They are still holding off untll she recovers on the respiratory side and her counts come back up. That will likely be measured in weeks and it is unlikely that we will be furloughed from the hospital between cycles. So we are mentally preparing for a two month plus stay from.
"Spring turkey season opens on the 23rd, I know you agree that what Becca needs is massive full body mount tom turkey in her hospital room. I have every intention of meeting that need and you know that I really need to shoot something about now, so any help would be great.....AMEN"

4/16

Overnight was calm, well as calm as an ICU can be. Becca had a great nurse overnight who was gentle, kind and silent. I was only up a few times during the wee hours. Trisha enjoyed the comfort of home last night and is going back to work for a couple days. The Docs have lowered her PEEP to 10 and planning to lower it more today. The trick now is to slightly lower her sedation and play with the ventilator settings to find a the magic mix that will lessen her panic at those times when she becomes more alert. One method/change is called NAVA (neurally adjusted ventilatory assist). This involves replacing her NG feeding tube with one that senses and anticipates her diaphram contractions then relays this to the ventilator allowing her to determine her breathing pattern. The idea behind this is to lessen the struggle between her and the vent, essentially allowing her to hold the reins. Other than her body chewing up platelets her blood work looks very good. All are pleased with the direction Becca is going and are hopeful that she will get off the vent soon. EK. (p.s. I published this without the editorial oversight of "She who must be obeyed", and appologize for the poor punctuation and spilling)

4.15.2012

To catch you up (morning 4/15)...

Not much new yesterday...  From what we hear, we have a child that wakes up with a vengeance (yeah, like we didn't know THAT!).  Becca woke up four times overnight Friday, and she immediately tried to grab her ventilator tube with all the strength she had.  This was a scary sight to behold, and it happened a few more times during the day yesterday.  She was given platelets and Lasix in the morning yesterday, and she responded to the Lasix with a little over a liter of output. Her PEEP (Positive End Expiratory Pressure) was weaned to 13 yesterday, and they increased her sedation to reduce the use of paralytics.  Everything is a balancing act... fluids and diuresis, waking and sedative, etc.  Any one change directly impacts another aspect of her treatment.

Her nice nurse last evening helped me to give her a "bath."  In her hospital bed, we lathered her up with Johnson & Johnson baby shampoo, washed her hair, and gave her a good washcloth rinse.  I was able to finally brush the back of her hair (she won't normally let me get to it), and the nurse overnight even braided her hair.  Her coloring looks good, and she smells like a baby... LOVE it!  I just wish I could rock her and hug her tightly to me.  I really miss that, as well as hearing her cute little voice.

Not much happened overnight, except for a little ventilator malfunction that freaked us out.  Becca only needed Roc (paralytic) twice overnight; once when the ventilator wasn't working, and the other time when they weighed her this morning.  Weighing her while she is under sedation is a big production in which they actually use a large sling-like contraption.  Kind of interesting to watch, but it reminds me of watching a marine biologist weigh a whale.

On rounds this morning, the team talked about again weaning Becca's PEEP today, giving her another dose of Lasix, yet keeping all of her antibiotics on board (four different ones plus an antifungal).  It's kind of shocking when they read back the orders for the day and give the full list of her medications!  They will try to cut her PEEP to 12 this morning, and if she tolerates it well (meaning her saturation recovers), they will try for 11 in 6-8 hours, and so on.  Dr. Wong (the ICU attending) said that they will not even think about extubating her until she is down to 5 or so.   Becca's got some work to do, but at least she's conserving some of her energy so that she has the lung strength to do this.

Dr. Adams (her oncologist from A5S who has been on rounds with us all week) is very pleased with how Becca is doing, considering where she is right now.  She told us that usually when patients end up in the ICU, they have a rough patch where they have lots of "other things" going on.  Becca's sole problem right now is ARDS and pulmonary issues related to it, but she isn't having renal, cardiac, or other system failures.  Her labs look pretty good with her hemoglobin holding, but she just can't hold on to her platelets.  She's been getting them each day, and a few more seem to be sticking each day.

On behalf of our entire family, I wanted to take a few sentences to send a HUGE thank you to so many of you wonderful angels out there!  We are overwhelmed to have received so much help with everything from providing a nurturing and loving home away from home for Lily, to cleaning our house, to bringing yummy food and good company down to us at the hospital, to furnishing an inordinate amount of bribes for Becca and fun items for Lily, to supplying numerous gift cards and financial support, but most importantly, all of the cards, thoughts, and prayers!  We feel so blessed to be surrounded by such a wonderful support system, and I don't know how we would do this (again) without all of you.  You help to give us hope and make Becca's recovery seem possible.  THANK YOU!
TK

 

4.13.2012

4/13 Afternoon

Becca is still hooked up to the ventilator, and we are expecting to be here for another week or so; not sure if she will be hooked up that whole time or not. Becca does not really look like herself with the tubes and tape around her face and nose, and she is being kept sedated so that she doesn't wake up and cause damage in a panic.

This event appears to be primarily a respiratory failure, meaning that it is not currently being complicated or compounded with other system failures (i.e., renal or cardiac). This offers some latitude in treating her breathing. Today she had another peripheral IV put into her right arm and a "A-line" in her left. The A-line is like an IV except that it is tapped into her radial artery, which gives them real-time blood pressure and access to arterial blood. Good thing she was asleep for these!

Her chemo has been suspended for the time being, and we have not been given an idea when it will resume. We feel like Becca is in good hands with the ICU team. It is a very different culture here than on A5S... not bad, but different. The nursing and medical staff on A5S is a bit more nurturing and relationship-attuned, while the ICU team is much more task/treatment focused. This makes some sense, and actually, we appreciate their efficiency and rapid response. I do not intend to take anything away from either team, just another of my pointless cultural observations. FYI few people on the ICU begin their statements with "so...."

Ellen, thanks for the "Amen" re: eviction from A5S. I met with the Family Sevices liaison this morning; she was more in the mode of conflict resolution than anything. I am getting in touch with the Famiily Advisory Council as well to see if there is way to improve the quality of communication and to address JAHCO's regulating this joint into absurdity regarding the windows on the wards. I was encouraged to apply for a place on the Family Advisory Board - LOL. Trisha does not think it is such a good idea. She will not let me run for the school board either. My verbal filter runs a touch on the free side.

Becca is receiving a great deal of platelets, plasma, and blood. I will give another call for folks to go to Hoxworth to make a donation of blood or plasma, if able. I am not really sure how the procedure is different with regards to time and volume but know that they want and will take both. Mention Becca when you go in, even though it will not be directly for her. I have heard from a few people that when they went in and mentioned her that the Hoxworth folks said others had been in recently for her. Lots of other kiddos and adults are in need, too!

By the way, Trisha and I were "swabbed" in the clinic yesterday, and Lily was today.  This "high tech" test entailed rubbing two long Q-tips at a time on the inside of our cheeks, rolling them around to get cells on them.  We each had to do this six times on each side, to total 24 swabs per person.  They then put the swabs in a regular paper envelope, sealed them in a plastic bag, and sent them off.  This test will determine whether we are bone marrow match for Becca.  Lily will likely be the best match (she has a one in four chance); however, she is very nervous about being a match.  We should know the results in a week or two, but when the nurse from the Bone Marrow Transplant unit met with Trisha, she told her the good news that Becca's HLA type is very common.

Please continue the prayers and positive thoughts... we can use them!  We are so lucky to have such an amazing support system of people who love Becca (and all of us), and we thank you for your continued help in getting through what has been the most difficult and emotionally draining time of our life so far.
EK & TK

ICU 4/13

This is going to be brief, as we are physically and emotionally exhausted. Around 2-3 am Becca took a respiratory down turn, and after various efforts to improve her lung function, she needed the artificial support of a ventilator. The event is unofficially being treated as ARDS (acute respiratory distress syndrome). It was a frightening experiance to have her struggling so much. She is currently being kept under while she is tubed and all her vitals are stable. We hope that this allows her body make some needed recovery without the added stress of stuggling to breathe. The ICU doc indicated to us, "I believe that she will make it through this and get better." We will post more details as we know them... EK

4.12.2012

5pm - ICU

Becca was transferred to the ICU this afternoon. Her respiration rate was quite high, she had a high fever that wasn't responding to the Tylenol, her profusion was poor (circulation to extremities), her blood pressure was extremely low, and she was retracting (sucking air/flaring nostrils). We have been battling fluid seeping into her lungs, especially with the increase in her IV fluids, but Becca was really struggling with breathing this afternoon. She is still on oxygen and is being kept NPO (no food or drink) in the unlikely event that they need to use a ventilator over night. She is sleeping pretty peacefully, has gotten a unit of a nice 2012 Vintage O+ and is looking a great deal better. We are okay with the switch, so she can be monitored more one-on-one. The casualty of the move is that we were evicted from our room and floor. I am meeting with Family Services tomorrow to yet again start complaining. Here in the ICU we have several weeks worth of groceries, toys/bribes, and gear piled up in the corners. The bottom line is that they have not yet figured out a way to bill for two beds. The charge nurse at the time (Nurse Ratchet), I described in the moment as "tits on a boar." I am partly complaining about the eviction and circumstances surrounding it, but mostly is focused on setting the right expectations. We were fully prepared for a trip(s) to the ICU during this ordeal, we were not told that such observation would require an abrupt and complete removal of belongings. We have been jointly working on this posting over several hours. Most recently, Becca is looking better and stronger, and we are hopeful for a return to A5S tomorrow. EK

And so it begins (again)

Late yesterday evening, Becca recieved her first dose of the hard stuff. Part of the deal with the Ara-C is that she needs to have special eyedrops every six hours; this is less than popular but necessary to protect her eyes from inflamation and potential infection. Very soon after the chemo started, so did the nausea and everthing that goes along with it. Becca's upset verbal response to this was, "I don't want to be me anymore."  Hearing that pretty much made us want to drop to the floor.

Her vomiting has been pretty hard to control, but we are trying to retime some of the drugs that work better so they offer better coverage during the hardest times. On a positive note, she responded very well to the first dose... almost too well. Her WBC went from 87k to 13k in the span of about 6 hours. This indicates that her leukemia should continue be vulnerable to the chemo. The down side of the rapid response is that her blood becomes more polluted with the leavings of the burst cells and specific salts or chemicals that negatively impact her kidneys and liver and alter the Ph of her blood. Currently, it is her potassium and phosphorus levels that are most worrisome, and her creatinine is also elevated. The Docs believe that this should be manageable without anything heroic. As I was writing this, new lab results came back indicating a very welcome drop in phosphorus and creatine. Very good news indeed. We feel a whole lot better than we did an hour ago, and that Becca's extreme discomfort has some meaning. Good juju around here...
EK

4.11.2012

Good news


So... we got the much-awaited results of the chromosomal breakage test in the late morning, and Becca does not have Fanconi's Anemia!  A small victory, but a victory nonetheless.  She began chemotherapy  (Cytarabine)  around 6pm, and it will continue for the next four days, twice a day.  Idarubicin will be added tomorrow, and will also continue through Sunday morning.  Prior to her first dose of chemo, we had to give her steroidal eyedrops to prevent infection, and she needs them every six hours.  That doesn't seem like a big deal... only four days of chemo... but check out the syringes in the first dose she is getting today.  The chemo that Becca received when she had ALL was nothing compared to this stuff!  Then, we just wait for all of the side effects to happen, and her counts to come back up.  On the calendar they gave us this morning, the doctors plan on us staying for thirty days, but in reality, if her counts don't come up, we could be here a lot longer.

It (Cytarabine or Ara-C and Idarubicin) is going to be much stronger and harder hitting, and the side effects are really scary.  Besides obviously lowering red and white blood cells and platelets in the blood, nausea and vomiting, loss of appetite, and losing her hair, she will also likely develop something called Ara-C syndrome which comes with high fever, aches, pains, chest pain, a nasty rash, and conjunctivitis.  Luckily this syndrome will subside when the chemo ends, but she will be receiving it each month for the next few months. They will be watching her potassium and calcium levels closely, as well as her uric acid to avoid kidney damage.  She has also had lots of issues with fluid collecting in her lungs since her admission last Tuesday, and the Cytarabine will add to this, making it difficult for her to breathe.  I'm not going to mention some of the other "rare but serious" side effects, because honestly, I don't want to think about them right now.

On a positive note, we have had a good day!  We have asked that behavioral medicine be called in to assist us.  Needing help in telling Becca that she has cancer again, that she is going to lose her hair, that she is going to need to be in the hospital for a long time, and that she is going to feel much worse before she feels better is going to be tough for us, and the fact that Becca has no sense of time, what cells (good or bad) are, etc. makes it even more difficult.  Angela (psychologist) came in to do a puzzle with her, and she bonded quickly with her, so that is one step toward her building a relationship with someone here who will not hurt her.  We are going to try to develop as many of these as possible through music therapy, OT/PT, speech therapy, the school program, holistic medicine, and any other services that can help (and distract) her.

We also had cuddle time watching Mamma Mia!, and she sang along to all of her favorite songs with smiles.  I thoroughly enjoyed it... it was probably the highlight of my stay so far.  Some of you remember her lip synching to a couple of these songs when she was three years old and was just getting her hair back after chemo.  Here are two of the links if you want to smile:
http://www.youtube.com/watch?v=ExEIOcS8d9U&feature=context&context=G279f058AUAAAAAAAKAA
http://www.youtube.com/watch?v=Qx2uvOSJIFY&feature=g-upl&context=G279f058AUAAAAAAAKAA



 Two big doses of Ara-C... Becca's first IV chemo for AML

 Such pretty claws

 Great Nana Russell's cookies...yummm!

Good ol' grilled cheese and fries - the first "real" food I had since being admitted (well, except for the cookie)

I was ready to post this entry for the blog when Becca began exhibiting her first flu-like side effects from the Cytarabine.  Man, this is going to be a LONG week!
TK

morning 4/11

So...we have still not gotten the results of the test we have been waiting for. The only upside to the delay is that the immense weight we feel upon us we are accostomed to. Today that weight increases as the results are expected and the chemo will certainly begin. Renee Kniskern unsolicitedly brought us a nice lunch from a great little deli downtown, and we are very appreciative for her spending her lunch break with us. So... with relative calm and nothing emergent bearing down, we were able to sneak out (thanks to my mom) and have a nice meal together. Big thanks to Dean Gregory and the rest of the Montgomery Inn Family for their hospitality at the Boathouse last night. It was a welcome respite to the enviroment and diet of the hospital. Unfortunately, Becca is not a big BBQ fan. So...we have switched rooms and feel like we are now living at a Ritz, just a very aseptic one. It is a bit larger with an ante room that drastically cuts down on the light from the hallway and a little alcove that a perfect fit for the aero bed that we borrowed from Denise Rudy. Lothrop family, we believe this was your old room across from the playroom. So...as we finished up reading a bedtime story with Becca last night, we found out that her white blood cell count was very high again (110K) and were likely to head to the ICU for a leukapheresis procedure. This is similar to hemodialysis, but instead of removing proteins and other build up this procedure removes white blood cells. The danger of very high WBC is that it can cause very sluggish flow and can impact a number of organs including the brain. The attending Doc, Dr. Adams, was actually called in to brief us and evaluate Becca around midnight. Having an attending rousted from bed and brought in is never a good sign. Fortunately with the help of increased fluids, Becca rallied and her WBC count dropped below 100 and has continued to fall below the critical threshold. Another small victory for us - narrowly avoiding the ICU and a procedure that would have required accessing a larger vein in her groin. As of right now, she still is getting a fairly large volume of fluids and lasix to make her urinate out the excess. So...if you thought it odd that I began every paraghaph with "So...". This opening is a friendly little poke at the staff at CHMC (or at least the Hem/onc staff). There is a linguistic phenomenon where nearly every person, especially the Docs, say "So..." every time they begin speaking regardless of topic or situation. We have even seen new residents develop this pattern over time. So...listen for it if you ever have the misfortune of being here. EK

4.10.2012

Ground Hog Day

Lots more of the same as far as routine goes: lots of docs, lots of nurses, in and out, all day and night.  Becca is pretty medically high-maintenance, so one nice thing is that her nurses only have one other patient and she gets pretty reliably efficient care.  The nurses on this floor are very good at what they do and are very special people. It takes a certain personality to be able to cope with the stress that I am sure their positions come with while maintaining a compassionate and friendly stride.


Becca has been eating more. We now can add Oreo milkshakes, french fries and popsicles to her repertoire.  Never have we been so pleased by the exclusive consumption of junk foods.  As many of you know, her diet since her first diagnosis has not been, shall we say, "well rounded."


It is now about 9:30am, and while she did not receive morphine overnight, she is getting some now.  Her pain seems to migrate and she is now indicating that it is in her shoulder.


We are expecting the results today that will tell us more about her what direction we are going with regard to chemo.  Though we have not been told explicitly that if she does have some issue with the way her DNA breaks her odds decrease, that is certainly the feeling we get.


Seeing as though we are going to be inpatient for the the next four to six weeks, we have requested a different room that is larger and has blinds built in to the window on the door.  Some numb-nut decided that it was a hazard to put up anything that obscures the window.  The issue for us is not privacy or decoration... it is about light from the hallway.  Those of you that have spent some time here know how common it was to block that window and made it feel just a teeny little bit less attached to the hospital. So I have made it a point to whine and complain about it at every opportunity; nothing worse than a stressed-out parent with time on his hands.  EK

4.09.2012

Yay for cookies!

Becca ate a cookie today!  I don't think I've ever been so excited for her to eat such a food, but when your child hasn't eaten in almost a week, the doctors start discussing putting in an NG tube, and she starts to show interest in eating anything, you experience a little bit of hope.  I SO needed this after such a long night.  Becca was up every half hour to forty-five minutes (as was I) as a result of the lasix emptying her body of extra fluids, pain, fever, thirst (yay!), the need for oxygen, nebulizer treatments, and constant beeping of her leads for heartrate, respiration, and pulseox.  We sure needed a nap today!

Her labs showed that the platelets she got yesterday did not take again, which means her body might be attacking them.  We are still awaiting news of a chromosomal breakage test so that we know how to proceed with her treatment, but so far we haven't gotten the results.  We expect them tomorrow, and hopefully we can start chemotherapy.

After taking an oral medication that she didn't want to take, Becca's eating a popsicle now and watching Chipwrecked, so all is good!  More news tomorrow...
TK
        

4.08.2012

Easter evening

Becca had a pretty rough evening.  She got IVIG and lasix, which made her urinate a LOT.  I guess it was good, because she got rid of the excessive water so that the IVIG can work better, but she started having bad joint pain which was exacerbated by having to get up so often to go.  It started hurting her left shoulder, and then moved into her right hip.  She ended up crying and howling, but she refused to take the oral Oxycodone because she had thrown up this evening.  They tried to get a quick order in for some morphine, however, in the end it turned out to be about a 30-minute ordeal with really intense pain.  Oh, if I could have only taken away her pain and made it my own!  Finally, the morphine kicked in, and after a few more potty breaks, she is asleep (but again feverish).  Hopefully, it won't be a busy night...
TK

Easter Afternoon

Last night was pretty long. Not scary or all that bad, just extremely punctuated by bathroom emergencies every hour or so. Beccas systems are pretty out of whack from all the antibiotics and other pharmaceuticals, so she does not have a great deal of control. In the early morning she also complained of her butt hurting, which we translated into, "I'm having some hip pain... would you please make it go away at your earliest convenience?" Becca asked Trisha why grown ups don't get sick and why God and Jesus want her to be sick, which made us choke back a few tears. Easter morning she was alert and fever free and played with a few toys; we were hopeful that she would be interested and awake when Lily came to visit. But as luck would have it, shortly after Lily arrived, Becca had to take a pretty nasty oral med and puked it back up. Lily is quite uncomfortable in the hospital setting and seeing her sis so lethargic and connected to machines is upsetting. We are struggling with how to balance the unease vs. separation. It won't be long until Lily has no option of visiting at all once the hard chemo begins. On the clinical front, there is not much to report. She has been receiving platelets, but her last transfusion yesterday afternoon did not show any increase at all in the overnight lab work. The Docs thought this could be due to her body actually using them or she may have just recieved a bad donor batch and her body destroyed them. They did not seem to be all that worried about it. She is currently getting a dose of IVIG (immune gobulin) that should help her compromised systems fight off an infection if there actually is one. Some are considering that all of her syptoms of infection may just be from the leukemia itself and we are treating a phantom infection. Be that as it may, we need to continue to treat until we begin the chemo early this week. The iPads continue to be a hit. I emailed Apple to let them know how we are using them; I can't imagine we are the first, but I supposed it could not hurt. I thought it might even be cool for Lily to take hers into Becca's classroom so she could say hi to her pals after spring break. Right now we have a rough plan on how we are going to proceed into summer. Trisha is paying the price of being stable and reliable in her career and will be going back to work this week. She is the source of our insurance and has the most to lose with regard to her tenure and retirement. I will be taking an extended leave of absence from my job at Shaker Run Golf Club. The owners and senior managment have been very understanding and supportive of this situation, as have the members that I have been fortunate enough to come to know well. It is a very odd feeling to say that I hope and pray that we are allowed to fight all the way through transplant, and I am out of work for some time. We are not ready to lose her. E

4.07.2012

A few quick pics


Becca on Tuesday after we finally got in our room on A5S

Becca on Friday before Lily's visit (taken with Becca's new iPad!)
Becca and Mandy the manatee (it's hard to believe we had just arrived home from vacation at this time last weekend)

Afternoon 4/7

Well I am looking at Becca right now and she is the most alert that I have seen her in days. We have gotten some real smiles, giggles and a bit of play. This is really great to see even if it only lasts a few minutes, though we hope this is indicating a positive turn.

Becca got a new anti-nausea medication this morning called Kytril, as the Zofran is not working. She hasn't wanted to eat or drink because she is feeling so badly, but she cannot even keep any of the oral medications down, which makes things tricky. Overnight, they tried to give her a tiny dose of Atavan (a sedative and anti-nausea med that needs to be taken orally) so that they could get Atarax (an alternative to Benadryl, since she has a negative reaction to it) in her, and then give her Phenergen for nausea. The problem was that she threw up the Atavan before they could even get the Atarax in. So far so good with the Kytril... keep your fingers crossed for her.
We are still waiting for a couple of test results to come in on Monday or Tuesday that will be major factors in determining what type of chemo will be used during Becca's treatment. As of right now, we are planning on Wednesday being the first dose of the hardcore chemo. As bad as she is feeling, the Docs think that the chemo will actually make her feel better. Pretty strange to consider that the drugs that are about to leave scorched earth will actually increase her general feeling of wellness temporarily. They think that perhaps it is the leukemia that is making her feel so bad, rather than the infection(s) they originally thought were causing these horrible symptoms.

We had asked my brother Jon to pick out and pick up the iPads for us (so that we could reimburse him), but thanks to the generosity of my mom and dad and brother and sister-in-law, the girls can now video chat very easily on their iPads. Lily thinks it's the coolest thing ever, and it's something positive for her to focus on, as well as giving her a way to stay close to her younger sister. As I was typing this, the girls just had their first "Face Time" and it was a huge hit! Becca enjoyed seeing the silly faces Lily made, as well as seeing and hearing her Nana, Papa, and our cat Stella. Lily even took us all on a tour of how green it looks outside, all of the flowers that have bloomed, and the status of the pond. This communication medium is so awesome for them/us!!!

We cannot stop being thankful for all the well wishes, gifts/bribes for both girls, comforting words, and offers to welcome Lily into your homes. We have made arrangements with the wonderful Barrett family, a family very similar to our own, where Lily will stay at least until the summer begins. This will provide her with a reliable place to call "home" and allow her to pretty much continue with a normal schedule while we are at the hospital with Becca. One of us will attempt to take her back to our house to stay every couple or few days, though, and she will still have visits with other friends and family members. We are so appreciative of the Barretts for offering to take on this added responsibility and giving Lily a surrogate family that she loves.

Many people have asked if they can visit, and while we would really love to be able to invite everyone to come down, this is a pretty tough time. With love and thanks, we need to insist on very limited visitations, and only by the most healthy. No visits from children are allowed on this floor... many of the kids here are immunosuppressed.

Another tough day

TK. Yesterday was another rough day. Becca was not her normal spunky self, which is difficult to see. Her temperature remained high throughout the day, with a high of about 103.5. Luckily, this time around, they have IV Tylenol, as she vomited frequently. She hasn't eaten anything or had anything to drink in about three days, and has no desire to. She was only up for a total of 15 minutes during the day.

4.06.2012

rough night

E.
So a pretty crappy night. O2 would not stay up with out significant support. Fever was stubborn and never dropped below about 102. She became more comfortable and stable and narrowly avoided being taken to ICU for more individualized monitoring.
This morning things are pretty much the same. Her creatinine levels were up, indicating struggling kidneys. She was scheduled, since cancelled, for a full CT this morning because the contrast needed for the procedure is hard on the kidneys and she is already getting a pretty wide variety of necessary drugs. The Docs have opted for an ultra-sound for her abdomen and will wait for a CT for the upper body and head. The likelihood that the search for the infection source and its treatment will delay the start of her first real chemo cycle.
We are debating whether or not to allow Lily to see her Sis so down and despondent. The probability that Becca will look and feel much worse at times in the coming months is pretty darn high, but we are concerned that it might be unnecessarily scary for Lily right at the beginning.

We have put my brother on the search for a very efficient and easy way for the girls to video chat. We are leaning toward getting a pair of ipad2. Both the girls know how to use them effortlessly and the newer models unlike our originals have the software and camera built it. That is not a request for assistance, just what is on my mind.

Those of you who pray to a god or power (without using a compass) please do not forget to include Lily. This is going to be very difficult for her as well.

Afternoon in the OR

It was a pretty good morning here at the hospital, Becca was in good spirits and made a fast friends with a young lady from Child Life, there was still some coffee left in the parent lounge and Trisha scored some zanex from a guy out on the corner.
Mid afternoon was less pleasant with our trip to the OR. All things considered all the procedures went well, however she bled more that the docs would have liked so they ordered platelets.
Later in our normal room things were further complicated by her being unable to keep her O2 level high enough without supplemental oxygen and a high fever (bit over 103).
skipping ahead to the present time... this evening/night she has gotten platelets, been given a breathing treatment nebulizer, one unit of blood, a half gallon of Tylenol, a belt of hydroxy urea and a few other things I can not recall.
We are looking forward to a special visitor tomorrow. Lily is coming to visit her Sis and spend the night with Mommy at our house. We also are telling Lily tomorrow that Becca is sick again, that is going to be very very difficult
I am feeling the need to shoot something...if it were winter that Easter Bunny would not have a chance. It is not Trisha writing BTW

4.05.2012

Sorry, but I "Ethan" will be writing some of the blog posts; you will not be treated to Trisha's brilliant writing in Becca's voice.

Thanks to all for the kind words and prayers of support... they mean a great deal to all of us. We are back at Children's Hospital Medical Center (CHMC) with really crappy developments. Becca again has leukemia. Her original diagnosis in 2008 was with A.L.L. This time around it is the wicked stepsister called A.M.L., rather than a relapse. In fact, her treatment of ALL is what caused this AML. Needless to say, we are devastated by this news and even more terrified this time because we have some idea of what to expect.

The treatment protocol is quite different for this type of leukemia. We are prepped for extended inpatient stays for the next several months while the docs administer very aggressive rounds of chemo. Following the treatments, we wait for her immunity, blood counts, etc. to drop to zero and continue to wait for them to come back up. Once her "counts" are stable, they give us a handful of days off to go home, then we go back in and repeat until her tests results indicate remission. Remission is not our final goal, however. Remission more or less is just an indicator that she is ready for a bone marrow transplant.
Though this setting is no stranger to us, this different treatment protocol is all new for our family, and we are learning more every hour. Today, Becca is going to the O.R. for several fun procedures including a lumbar puncture, chemo into her spine, bone marrow aspiration, central line placement in her chest....but wait...there is more...if we act now, we also get a broncoscopy with lavage, which features a flexible scope down her trachea that looks around and then flushes her lungs with saline and vacuums it back in order to get a secretion sample.

With regard to the bone marrow transplant, many people have volunteered to be donors. In Becca's case, the docs will only test parents and siblings. If no match is found then they go the national bone marrow registry, www.bethematch.com . I am told that they are likely not accepting new caucasian donors, but they might have some drives going on in which they would.

Hoxworth Blood Center, however, is very much in need of blood and we would encourage anyone able to donate to please do so. Kids like Becca get blood and platelets frequently, and I know Hoxworth's stock is currently low.

Everyone has been asking what they can do, which we truly appreciate. While we have trouble accepting help from others, we realize that we will need so much more assistance this time around. Honestly, right now, we are not even sure what we need. We are trying to make sense of all of this and to take it one (or two) steps at a time. After the bone marrow aspiration today, we will have a better idea.

Some items that will definitely help us out in the short term would be lots of "bribes" for Becca. She is having truly awful things done to her, and she is much bigger, smarter, and more vocal this time around, so any tiny rays of hope would be helpful. These are some of the things she likes:
  • Tiana (princess from the Princess and the Frog)
  • Polly Pockets
  • Squinkies
  • Littlest Pet Shop
  • Barbies
  • Arts and crafts kits/projects (especially those requiring peeling and sticking of foam tiles, mosaic-like projects)
  • Nightgowns
  • Earrings
  • Fingernail stuff...stickers, pens, polish, polish sausage


4.04.2012

No news is good news

Ethan here. The following is a draft that Trisha began some time ago and though it does not address our current situation is does offer a glimpse of how our world has again been turned on its head.

Well, it has been since August that Becca's blog was updated, and that should tell you that things have been going pretty well. If you'll notice past blog posts, the more frequently I updated, the worse things were.


*By the way, the blog posts will now be in Trisha's voice, as I no longer have the energy or creativity to write from Becca's point of view. Sorry!

We've had our share of bad luck with Becca's health this school year, but nothing to really warrant a chain of blog posts. To catch you up in a nutshell:

  • Becca's now in Kindergarten and loves school and her teacher
  • She is learning to read and write, and she's oh-so-excited about it
  • She is still the puzzle queen of her family
  • Becca did Soccer Shots in the fall and a little cheerleading with Upwards over the winter
  • She was supposed to have her tonsils out next week, since she has had strep throat five times (in three months!)
  • Three instances of croup this year have caused her to miss even more school