8.29.2012

An adjustment

Unfortunately, this is the first spare moment I have found since we got home on Sunday, so I'm sorry it took me so long to update you. Don't get us wrong... we are thrilled to be home!  Everybody's been asking, "Isn't it wonderful to be home?!" with excitement in their voices, and I find myself hesitating a bit.  Let me just give you a glimpse into the last sixty hours...

We unloaded the car on Sunday afternoon, and the bags had barely dropped to the floor when home care showed up for review and training.  The nurse stayed for approximately two hours, making sure that we knew what we were doing hooking up her TPN and lipids, then Ethan took off for Clifton again to pick up a bedside commode at 9:30pm.  I ran back and forth between Lily's and Becca's rooms to read books, tuck in, and assist in getting Becca to the bathroom.

While we were in the hospital last week, Becca apparently picked up a virus, which is aggravating her kidneys and bladder, causing her let out bloody urine every 15-20 minutes.  We decided that trying to move her IV pole over the carpet into the bathroom each time she needed to go would not work.  Thus, the need for the bedside commode.  It is an ugly, unpleasant, and sometimes painful condition, but not typically dangerous (otherwise they wouldn't have let her go home).  The virus is supposed to take two weeks or more to clear up.

Unfortunately, Becca (nor the rest of us) have slept well since last Tuesday, as her urge to go occurs day and night.  She really has not received more than 45 minutes of uninterrupted sleep in over a week, and she is totally exhausted.  Ethan and I have been taking turns sleeping with her to assist her at night, and I have been working, too, so we are pretty much zombies.

Monday at 1:30, Ethan and Becca had an appointment in the clinic at Children's to get Pentamidine, but they wound up getting home at 7pm with a ticked-off Becca, as she was forced to "go" in her carseat on the ride home.  Again, as Lily and I walked in the door after Lily's meet-the-teacher night, and Becca in the bathtub, home care was knocking on the door for more signing off and training.  Before that could happen, though, we had to do a dressing change, as her dressing was falling off and then wet from the bath.  Usually she despises dressing changes, but she has progressively gotten a little more tolerant of them.  That night was surely an exception.  We had to hold a screaming, writhing Becca down as she tried to pinch the nurse and me and kick Ethan, so that he could remove the tapes and coverings, clean the central line area, and apply a clean dressing.  Lily ran outside so that she didn't have to hear or see what was going on.  Needless to say, she was totally spent by the end of that ordeal, and she fell asleep as I rocked her in the chair.  She slept for 30 minutes, and we were excited about that, but then she woke up to go again.  Becca wanted to go right back to sleep, but we still had a fight ahead of us to get nine syringes of oral medications in her.  Let's just say it ended with us saying, "Well, we'll ask Nurse Linda to give us a shot of your medicines, then..."  We decided to hold off on her TPN and lipids overnight that night so that she had more of a chance of sleeping for longer bits of time.

Tuesday was a bit better.  Ethan tethered Becca to her TPN and lipids, using the nifty and much more portable backpack instead of the IV pole.  They didn't have to head to the hospital, so it was nice to just hang at home, and they even made cookie dough together.  Ethan spent a large portion of the day organizing the abundance of medical supplies, medications, and "stuff" we will be using.  Luckily, we won't be entertaining anytime soon, because our dining room now looks like the Pyxis at the hospital.  If you know Ethan, you realize he's not the most organized person, so it was cute to see that he had so thoughtfully planned out where things belong and what is most functional. He had also cleaned the bathroom, counters, and floors in the kitchen several times during the day, which is also unlike him.  All of this on not much sleep is pretty impressive.

Becca was really uncomfortable and itchy in her lower region last evening, screaming that she didn't want to be her again.  It is so heartbreaking to hear her say that, and I feel so helpless.  I wish I could take all or at least some of the pain away.  She was in so much pain that she was even ready to try taking a pill (one that would help her have some relief from the BK virus, but that she has resisted in liquid form because it looks like blood).  Ethan tried to help her swallow the pill, but it was a complete disaster.  Becca has never taken a pill, and the debacle ended in her spitting the pill across the room while laughing.

Today we are at the hospital for a bone marrow aspiration and biopsy, and they just finished giving Becca platelets.  Ethan and Becca will come back tomorrow for IVIG.  Will post more later!
TK

8.26.2012

Headin' home

The docs gave us the "go ahead" for discharge today, though they want to boost Becca's platelets before we leave.  We're hoping to be home in the early afternoon, and boy, are we excited!  Becca and Ethan will go back to the clinic tomorrow at 1:30 for a follow-up.  Thank you for continuing the prayers for Becca's healing!  I will write more later... I have to pack!!! TK :o)

8.22.2012

Sisters reunited

After several weeks apart from each other, Lily was able to visit with Becca at the hospital tonight.  Ethan and I teared up as they gave their first hugs to one another, and there were lots of giggles in the room tonight.  Nurse Amanda even came in to (jokingly) tell us that it was much too loud... they were setting off the noise monitoring traffic light in the hallway. Becca ate several of the Chick-fil-A nuggets and drank the lemonade we brought (man... we're gonna need to buy some stock in that place - that's three days in a row!).  We ventured down to the gift shop for a quick outing, then Lily and Becca played Connect Four, and we rounded out the evening with a family game of UNO.

It was fabulous to see Becca so positive and see her spirits lifted.  I think Ethan's optimism and pushing to get out of the hospital on Sunday is really motivating Becca.  She says she's feeling good, and I kept telling her how good she looks (which only made her smile and hug me more).  I asked her if she was happy that she would get to come home soon, and she grinned.  Last week, she didn't believe that she would ever be able to go home and stay there.  Becca's getting up out of bed more, and getting out of the room a few times during the day (OT, PT, walks, and private play time in the playroom thanks to Amy). Ethan has talked her into taking some of her IV meds as oral medications, explaining to her that it will allow us to go home sooner.  Even though Becca still doesn't enjoy taking oral medicine, she's being a great sport about it and doing what needs to be done.  Ethan is wonderful about prepping her for things that will happen or that need to be done and using calming words.  I guess you inherit some of that in a family full of psychologists...

On rounds this morning, Ethan mentioned to the doctors that he knows they are counting on the middle of next week for discharge, but he's going to fight for Sunday.  At that point, one of the doctors said that they don't discharge patients on Sundays, and Ethan replied with, "Uh, yeah, you do."  One of the docs who has gotten to know us pretty well looked at that doctor and told her, "He's been around... he knows we do."  It's not like they were trying to hide the fact that they do, but the current attending's service ends on Sunday, so we think they just don't want to hang around to fill out discharge papers.  I guess you had to be there or to hear Ethan tell the story, but I was chuckling on the other end of the phone.  Ethan's pretty determined when he feels strongly about something, and it was great to hear the excitement in his voice today when he started getting the process moving by having the continuous flow lowered on Becca's pain pump, some oral medications replacing IV meds, and training from home care on what we need to do.  What a wonderful advocate he is for Becca!

 Believe it or not, Becca looks so much better here than she has in weeks!  If you've ever 
gotten a hug from her, you know that she gives the best hugs in the entire world...
The girls wanted to cuddle, since that's something they don't get to do very often these days.  
It was pretty adorable!


Please continue to pray that Becca's counts continue to go up, up, up, and that her body shows that it is ready for the transition to home... I know her mind and heart would love to be there!  TK

8.21.2012

YEAH BABY!!!!

100% engraftment!!!!!!  Well, all the hard work, nasty chemicals, and general hellishness has not been for naught.  The Docs are using the "D" word pretty freely (as in discharge).  We are starting to wean her off the narcotics and transitioning some of her IV meds to oral in preparation of going home.  At this point we are optimistic about mid next week; between you and me, I am thinking this weekend looks possible.  At home she will still be getting some IV fluids and nutrition to help keep her strong while she is getting used to resuming her diet of chicken nuggets and strawberries.  I am a bit worried about her coming home right at the start of the school year when all the little vectors of infections and disease are in one place trading germs like Pokemon.  Unfortunately Lily would not be a good candidate for home school and would miss out on all the life and social skills one learns on the bus, not to mention the basic survival skills from the lock down drills.  Becca, on the other hand, is more likely to be on the other end of a lockdown situation given the right amount of steriods.  EK

8.20.2012

Out and about

Becca's counts are still heading in the right direction!  They sent off an engraftment test today, and we should have the results by tomorrow evening or Wednesday morning.  We want to have a 98% or better to earn an "A" or "B," and below 50% is considered a failure of the transplant.  Please join us in praying for 100% (yes, I'm a perfectionist, especially when it comes to this!).

We were able to venture out of our room for a short walk today.  This is the first time Becca has left her room since July 16 (except for one trip to radiology).  I pushed her in a wheelchair, and she brought along her Becca American Girl doll with matching nightgown, slippers, mask, and bracelet.  It wasn't the smoothest journey, as I had to take her IV pole with six pumps and loads of dangling wires and tubes while steering the wheelchair and opening doors, but we did it.  Becca and I actually went down to the end of the hall on the BMT side (our first time down there), then we circled around to head over to A5S to see if we could find some of our favorite nurses.  Though she wasn't really talkative, and she was hesitant to go out at first, I think she enjoyed it.

The other good news is that it is looking like we might be talking about discharge in the next couple of weeks.  No promises, of course, but Dr. Grimley is on service next week, and we hear he is the least conservative of all of the attendings.  We still have some loose ends to tie up, though.  Her liver and kidneys are improving, but they are still not where they need to be.  They want another ultrasound later in the week.  Her ANC needs to be over 2000, and she is only at 870 today.  He would like Becca to be off TPN (the liquid nutrition she receives through her line), but he said she could still be on it at home if she had to.  Finally, she needs to be off the pain pump in order to go home.  This week and next week we will work on switching over to as many oral meds as we can.  Though she will still receive IV products once we go home, the docs would rather she take as many things orally as possible.

In terms of eating, Becca is getting really interested in food again and hungry.  The problem is that things taste differently because her tastebuds have been pretty much obliterated by the chemo.  The only things she's finding that taste good right now are cold and sweet/sour... namely lemon and cherry Italian ices and orange sherbet ice cream.  We keep trying other things, but everything just tastes bland to her.  Maybe we'll try some lemonheads or sour patch kids - yuck!  Hey... they are calories anyway.
TK

8.18.2012

Looking Up

You will be pleased to know that I have no major complaints to air in this post.  You will be more pleased to read that almost everything I write is pleasant and positive.

Becca's eyes are improving daily. You are now able to discern some patches of the white in her eyes, where only a few days ago there was only dark red.  The bruised "Uncle Fester" eyes are also much faded.  The swelling of her face and around her eyes is lessened, and she is almost able to fully open her eyes.  Her overall visage is still not so hot but is much improved from only a few days ago.   Pain is still a familiar companion for her, but it has moved out of her hips and legs and is more in her gut.  The belly pain is most likely a result of her swollen liver and is usually kept tolerable by her pain meds.

Most importantly, her blood is looking good!!!  She has been showing steady growth and improvment in her labs, and is sporting an ANC over 900 and a falling Bili.  She is doing very well on paper; in person she would tell you differently.  We have been trying to reassure her that even though it is difficult for her believe right now, that someday she will feel good again and will want to play, and that she will not always feel sad and tired.
EK     

8.15.2012

Engrafting

Well, I'm going to give the bad news first so that I can end on a positive note.  It turns out that Becca does have VOD after all.  Supposedly, it is reversible, and three days of high dose steroids (methylprednisolone) should placate her liver by functioning as an anti-inflammatory agent.  An ultrasound with doppler of her liver on Monday morning showed the portal flow reversal the docs mentioned.  While we are quite concerned about her liver, we are also worried about her state of mind while she is on steroids.  Those of you who have followed the blog for quite a while know Becca's relationship with steroids and her tendency to get "roid rage."  Needless to say, Ethan immediately asked for a consult from psychiatry when he learned of the plans to put her on high dose steroids.

The team of docs decided to kind of blow Ethan off and chose to put Becca on Zyprexa (the drug they gave her the day of the bone marrow transplant) without consulting with psych.  As many of you know, Ethan does not like to be ignored, so he used some of his contacts to get a pretty rapid response from the psych department.  Their opinion was that IV Haldol would be a good option.  It is an antipsychotic drug, and it should be helpful in combating the side effects of the steroids for Becca.  Zyprexa would have had to be given orally, and we are struggling to get any oral meds in Becca right now.  We are lucky to get one dose of anything in her each day. In addition, if the Zyprexa didn't work, the docs would not be able to switch her to Haldol later.  Ethan's timing and persistence are again (hopefully) saving the day.

I'm writing to you currently from the recliner in the bathroom, since I have been banished to this spot by Becca.  She is mad at me for some reason or another and vehemently told me to go away and close the door.  Unfortunately for me, whenever something or someone hurts her, she immediately blames it on me (not sure why)... but I'm trying to have a thicker skin.  She would not let us get her weight this afternoon, because that was something she had control over.  I tricked her into getting on the scale around 10:30pm, though, telling her that if she didn't get weighed, they would need to give her the "pee medicine" (Lasix).  Maybe that's why I'm in the bathroom...

Becca's had a lot of pain the past few days, mostly in her hips and back, so they have upped her pain meds. She is also very uncomfortable with the added weight, as well as itchy.  Another mean trick that the steroids are pulling is that she is all of the sudden hungry.  When she hasn't eaten in about two weeks because of the mucositis, and she turned down all of the foods here or anything else I offered to get her, she finally yelled at me to stop asking.  After we got her weight, she had trouble going back to sleep tonight, because she told me she couldn't get comfortable.  We tried and tried to readjust her pillows, etc., but she broke down crying, saying "I don't know what to do... I can't get comfortable!"  I had a feeling it was the steroids making her feel this way, so the nurse gave her a bolus of Dilaudid, and she drifted off to sleep watching Ariel sing.

The good news is that Becca's cells are engrafting!  We have seen her white blood cell count increasing little by little this week, and she now has an ANC that is trending slowly upward.  Once that gets to 500, they will send off an engraftment test to see what percentage of her cells are engrafting.  She's still in the double digits, though, so it might take a little time.  We are also seeing signs of improvement in the appearance of Becca's face and mouth, which is where the cells go first to heal.  She had two tiny mouth sores under her tongue, and they are now gone.  Her deep purple (black) eyes are now a lighter purple, the bruising is moving down her cheeks, and there is actually a tiny skin-colored area surrounding her eyelids again.  I'm also seeing a bit of white in her eyes again.  I don't want to speak too soon, but I think Becca's coughing fits are decreasing, too.  We'll see what tomorrow brings...
TK

8.12.2012

Monocytes in sight

Well Becca still looks like hell and feels about the same.  The best way to understand how she looks and  feels is to envision Uncle Fester (from the Addams Family), bed-ridden with a very bad flu.  It is pretty hard to look at her, but when nothing crummy is going on, she is still able to maintain her sweet disposition.
We got our tiny first glimpse of engraftment today.  Monocytes are becoming apparent in her blood work, as well as sporting an ANC of .08 and WBC of .1.  While the latter numbers are nothing too terribly exciting at this point, it is better than looking at a column of zeros like we have been for quite a while.  We are currently waiting for rounds this morning to feel out the docs' reactions/interpretations of the lab results, but we are expecting a bit of a positive spin.  Her liver numbers are slightly down but still elevated, and I am sure that a repeat ultrasound is going to be discussed to ensure that she is not developing VOD.   So keep the corks in the Moet et Chandon A Epernay, Champagne Dom Perignon Brut Millesime, Vintage 1996.  EK






8.09.2012

The valley

"Only if you have been in the deepest valley, can you ever know how magnificent it is to be on the highest mountain."
-Richard Nixon

Well, I think hope we are in the valley!  Becca is feeling miserable right now.  The mucositis combined with her cold have produced an abundance of powerful coughing and vomiting in the last few days.  I explained earlier that the blood vessels in her eyes broke, causing the whites of her eyes to be blood red.  Now, she has a really swollen face/head/neck, two dark purple eyes, and some newly broken capillaries on her cheeks.  Her eyelids are so puffy that it's difficult to tell when her eyes are open.  They are merely slits, and she's having trouble seeing as a result, which makes it challenging to watch movies (the only thing she wants to do right now). As her mom, it is extremely heart wrenching to see Becca in so much pain and looking so broken.  It's a good thing that she doesn't realize how she looks, because she wouldn't be able to handle it.

We had a pretty big scare today.  Of course we were last on rounds, which didn't happen until after 1pm, and the docs were concerned about Becca's bilirubin level.  It was elevated yesterday and was even higher today.  Dr. Mehta said that they are concerned that she might be developing VOD (Veno-Occlusive Disease) and they wanted to do an ultrasound to check her liver.  When Becca was 2 1/2 years old, she ended up with VOD as a result of one of the types of chemo she was given.  Here's the post regarding that http://beccakniskern.blogspot.com/2009/04/new-disease.html so that I don't need to repeat the information.  Needless to say, Ethan and I spent the day petrified that she has again developed VOD, and that this time it would be much more serious.

After a three-hour-long ultrasound in radiology with Becca screaming, the good news is that she doesn't have VOD!  This brings much relief to us.  Now they still need to figure out how to get more fluid off of her; the Lasix isn't working.  Since we were admitted on July 13, she has gained almost eleven pounds.  That's a TON when you're just over 3 1/2 feet tall and you've put on about 20% of your weight. Becca is extremely uncomfortable, but the way to get the fluid off of her is to force her to urinate more.  They are planning to double her dose of Lasix, and she'll get it a half hour after Diuril.  Unfortunately, this entails her getting out of bed, where she just wants to sleep off the pain, so that she can go to the bathroom constantly.

In addition, Becca has become febrile, so the doctors are adding on another antibiotic.  The fevers give her chills, make her skin extremely sensitive, and cause her to be quite mean.  It's not her fault, and I try not to take it personally, but I'm the type of person who internalizes conflict.  My stomach has been in knots all day today.

The pain medication that Becca has been receiving through her PCA pump is not really doing that much to help control her pain right now.  "The pain whisperer" (Ethan's nickname for the main "pain team" doctor) told us that oftentimes kids at this point become immune to particular pain medications, and they need to switch them to a new one.  Today they will start giving her Dilaudid instead of Fentanyl.  Let's hope this works, because she tells me that it doesn't help when she pushes the button on her pump.

Becca got platelets this morning, as they were only at 12.  Her threshold is 20, which means they try to keep them over that number.  Her afternoon labs showed that her platelets were only 5 (even after the platelets she got this morning), and her hemoglobin is low, too.  This evening, she'll be getting pre-meds of Tylenol and Benadryl, platelets, Vancomycin, red blood cells, and Lasix, in addition to all of the other meds she normally gets.  I sure hope we have a good night nurse who is adept at juggling!

I was a nervous wreck today.  Boy... this BETTER be the valley!
TK

8.05.2012

Spoke too soon

Well, almost immediately after posting to the blog the other night, Becca started vomiting up blood.  As Ethan said, it's never a good sign on the show House when this happens, and I agree.  It scared Becca immensely to see the dark red liquid in the barf bucket, which didn't help matters any.  Her platelets were low, so she received them during the night.  Unusually, Becca slept in until 10am yesterday and kept having coughing fits upon waking due to the mucositis.

Perhaps the largest shift I noticed yesterday was in Becca's spirits... she was quite down and almost looked defeated.  Though she wanted to watch a movie when she woke up, she turned on her side and just stared at the rail of her bed.  When Dr. Grimley came in to examine her and noticed how badly she was feeling and how depressed she looked, he told her that this was not going to go on forever... she would feel better and get to go home to her sister and mommy and daddy soon.  She shook her head, not believing him.

Becca asked to go to sleep again around 2pm, and she slept fitfully for a while.  My girl was back around 6:30pm, though!  She woke up, wanting to play UNO... imagine that.  We played four long games filled with giggles, splitting the wins, then played a game of Old Maid.  Cackling could be heard when we exchanged the Old Maid card a few times and finally when she won.  Becca smartly refused another game, as that might damage her winning record.      

Thanks to my wonderful friend Timmiera, we were able to watch some old Muppet Show episodes before Becca wanted to go to sleep around 10.  Unfortunately, she woke up vomiting blood again shortly after and received platelets again during the night.  The docs have decided to raise her threshold for platelets now, and they will give her more when her level is below 50 (she's been staying in the teens and 20's even after transfusions).

The good news is that Dr. Grimley says Becca's organ function looks outstanding, and that's what his main concern is after such intense chemotherapy.  He says the mucositis is a "mild annoyance" (easy for him to say!), but it will heal quickly once her cells start to engraft.  When Becca complained about her mouth hurting last evening, I did notice some redness and irritation under her tongue.  I'm hoping this isn't the beginning of mouth sores.

On another note, I need to mention what a terrifically sweet husband I have.  Though he is still feeling really sick, Ethan felt bad about me being "stuck" at the hospital for a few days straight and cooked me a steak and mushroom dinner with corn on the cob at 2am this morning.  He was planning on coming back to the hospital today to stay with Becca, and has the table set with fresh flowers and a bottle of wine, along with the yummy plate of food in the fridge.  I told him he is not allowed to come back yet (he still has a hacking cough and drainage), and Dr. Grimley nixed his plans to wear a mask and gloves to come down for an hour so that I could go eat the dinner with Lily.  Plan B is that he and Lily are headed down in a bit to drop off the meal, but they will not even enter the BMT unit.  My tummy is growling thinking about it...
TK

8.03.2012

On-track

Becca's not exactly at the top of her game right now (well, except for her UNO game), but she is doing amazingly well.  Many kids at this point in their treatment are sleeping for twenty hours a day, have sores coating the insides of their mouths, need loads of pain medications, and continuously vomit.  Becca is not there, thank goodness.  Though she is not eating or drinking, she is still managing to get her one oral medication in each day, as well as doing her mouth care, without throwing it back up.  We have told her that this is why she doesn't have mouth sores, although we're not really sure why she doesn't.

She is waking up each day around 8am and staying up until 5 or 6pm, when her body is just too tired to be awake any longer.  Becca is on a pain pump, and they have increased the doses slightly each day, due to her increasing throat pain.  She sounds like a seal when she coughs, and she is still vomiting as a result of the mucositis (but much less than earlier this week).  Platelets and red blood cells were given yesterday, and she seemed to hold onto them pretty well overnight.  Fevers chew the platelets up pretty quickly, so we're hoping that the fevers stay away.  Her liver and kidney numbers look good, but she is retaining some fluid.  The docs have given her lasix over the last two days, hoping to drain off some of the extra fluid. Becca is also now requiring some blow-by oxygen while she sleeps.  This is something that has happened with her before, because she breathes pretty shallowly when she's in a deep sleep, and her pulse-ox level dips into the upper 80s (they want to keep it in the mid- to upper-90s).  During the day, it is not a problem, and the docs aren't concerned.

As far as her disposition, you wouldn't know how sick she must be feeling by looking at her.  Becca is smiling, laughing, playing UNO (and beating everyone she plays!), and being her normal sweet self.  She gladly sits or stands up to play with OT, PT, speech or behavioral therapists, but her stamina is not what it used to be.  When she has pain, she is thankfully now beginning to press the button on the pain pump.  Before today, she was afraid it would make her fall asleep, and Becca doesn't like sleepy medicine.  The whites of her eyes are still filled with blood (which she says makes her look "evil"), but those should heal when her counts begin coming in.  Dr. Grimley told us that her pain should be peaking by the end of the weekend or the end of next week.  Once her cells begin engrafting, the mucositis will heal quickly and she will pretty suddenly feel better.  I'm hoping for the end of the weekend!

Ethan has some kind of virus, so he's banned from the hospital until there is no trace left.  We switched off days here this week, which was a nice break, and it allowed us both to spend time with both of the girls (separately).  Again, thank you to all of you out there praying for Becca and the rest of us!  I am humbled by the love, care, and generosity shown to us, and I don't know how we could do this without all of you. TK

Leg (and arm) warmers courtesy of Fancy Nancy, 
and an awesome cupcake hat knitted with love by Sandy - Becca is stylin'!

8.01.2012

wonderful parenting continues

Some humor never goes out of style, like the The Three Stooges, good ol' fashioned "low brow" slap stick.  Becca and Lily have always enjoyed the violent physical hi-jinks of Tom and Jerry and Woody Woodpecker.  So the good father that I am introduced Becca (and later Lily) to the more modern, but certainly not higher brow, incarnation of Jack-@$$.  Okay, before Child Protective Services is called, it was censored and the volume was off for the scenes that I let them watch.  Nothing brings out the deep laughs from the sweetest of little girls like watching a guy get smashed in the "no no's"  or getting covered in poop.  I knew that they would think it was funny, but nothing could ever have prepared me for the uncontrollable, doubled over, laughing and and knee slapping glee of watching this band of drug addled reprobates getting rich from willingly assaulting their genitals.   hahahaha
EK