7.31.2012

Ramping up

Becca with her new buddy "Woofy" - thanks to Great Nana's nurses at Mercy Hospital, Mt. Airy! 


So Becca's side effects of the chemo have started to come in pretty strongly, but it seems like she got away with a couple of days symptom-free following her transplant last week.  Most kids start needing a pain pump much before day +4, but Becca just started on it yesterday.  She'll be getting a steady low dose of Fentanyl, and then if she needs more, she can press a button to get an additional bump.

The docs are pretty impressed with how Becca's hanging in there and looking "robust," as they put it.  The mucositis is happening, giving Becca a croup-like cough, sore throat, abdominal pain, and lots of vomiting.  This is due to the cells dying as a reaction to chemo, and the mucosal lining of her mouth is becoming thin and sloughing off, while becoming red and inflamed.  So far she doesn't have mouth sores, which is good, but we were told to expect them.  Most kids stop eating and drinking before transplant, because of the intense pain and vomiting, but Becca just stopped eating on Sunday.  She is vomiting pretty frequently, though, and coughing a lot, but the mucositis is making the vomiting unavoidable... her belly just doesn't like all of the increased mucous, saliva, and blood, and anti-nausea meds cannot help with that.

Becca is still staying up for most of the day, and she's enjoying spending time with the PT, OT, and speech therapist in our room when they are available.  She takes it pretty personally on the weekends when none of these specialists work, though, saying with tears in her eyes, "No one came to ask me to play today."  She's spending time watching lots of movies, playing her Leapster or the Wii, doing arts and crafts, and playing card games such as UNO and war.

Ethan and I have been trying to switch off staying at the hospital this week, as Lily has really missed us (and we've missed her!), and we are attempting to remain sane.  I really enjoyed spending a whole evening and the next morning with her cuddling, watching a movie and eating popcorn, cooking dinner, and polishing her toenails and fingernails.  I know this doesn't seem like a night of "big fun" for most of you, but we are missing the simple things like this.
    
The most striking difference I noticed in Becca as I returned today (which luckily Ethan warned me about), is that she looks bad and it's difficult to look in her eyes.  Due to all of the coughing and vomiting and her low platelets (they were at only 3 this morning), she has burst blood vessels and capillaries in her eyes.  Thankfully Becca doesn't realize it, but they look like they are filled with blood.  Also, she has some petechiae on her chin and under her eyes for the same reasons.  Hopefully the platelets she got this morning will help with this.

Please, please keep the prayers coming for decreased side effects, Becca's stem cells to engraft properly, and for her counts to start coming in. TK

7.26.2012

They're in!

Despite Becca's best efforts today, she has healthy stem cells settling into their new home in her body!  Becca was trying to get a fever and "pick a fight" with us all morning (that's usually how we know she's getting ready to spike a fever... she gets really nasty and unreasonable).  The marrow came right on time at high noon, and when we tried to get Becca to put a mask on so that the nurse could hook the bag of cells into her line, she started fighting - swinging fists, kicking legs, screaming at the top of her lungs... you get the picture.  Ethan, two nurses, and I ended up pinning her down so that we could get her hooked up, and following that she continued the assault.

Vitals were needed every fifteen minutes, but Becca wouldn't allow the blood pressure cuff, she ripped the leads for her monitors out, and wouldn't keep on her pulse-ox sensor.  She continually screamed, "GET OUT OF MY ROOM," as well as hurling other insults meant to hurt our feelings for about two and a half hours straight.  She flung her head back, kicked her legs, threw objects, hit anyone within her reach.  I was exhausted for her.

The cells didn't want to flow smoothly by gravity, so nurse Amanda risked life and limbs by getting close to Becca so that she could draw some marrow into the syringe periodically to get the cells to flow again.  When she persisted in attempting an escape from the bed and wouldn't listen to reason, we had to restrain her again (BOY, is she strong for how little she is!), and she actually tried to bite me.  Deja vu... back to the "roid rage" episode (see earlier post)... they gave her a larger dose of Atavan on top of the one she had before transplant this morning, which did nothing, then they gave her a shot of Zyprexa in her thigh muscle as we held her down.  Finally, after a long twenty minutes, the Zyprexa "broke her," and Becca started crying and allowed me to hold her.  She fell asleep shortly after with major chills and spiked a pretty good fever within an hour.  Since then she's been drifting in and out of sleep, her heart rate is up, her blood oxygen level is down, and her respiration rate is high.  We're hoping that the Tylenol can break her fever so that she can sleep comfortably tonight.  I know I'm ready to crash, and it's not even 8:00! TK

big DAY

Well today is the day,  we are scheduled to to begin the transplant at around 1:00 pm today but have been led to believe that it is often late.  Suffice it to say that when the "stuff" gets here they will begin.  I believe that  it is being harvested from our gracious donor this morning and then being driven here.  Presumably that puts our donor within 3-5 hours of Cincinnati, not that it is all the important but we are very curious about this young man.  We are allowed to find out more about him after a year.  I am sure that with the advent of digital social networks it has been much harder to keep identities secret.  All it would take is someone to make a post to 500 of their closest "friends".  Please Do Not Do This.

More to follow soon.

7.24.2012

Transplant time scheduled

Well we now have a time for the transplant...this Thursday around noon. Some families enjoy a bit of a festive atmosphere and employ some fanfare to mark the day. We are so grateful to our mystery donor for his selflessness and are forever in his debt. The transplant is a big day for us but we are going to keep thing pretty quiet and normal; maybe we have become jaded over the years after all this all Started with a limp back in 2008. Truly the transplant is a big day, but it is not the end by a long shot. Becca has been showing some significant side effects to the chemo and rabbit serum but nothing too scary as of yet (I hope I do not regret writing that). Currently it is just some high fevers around 104 and vomiting when there is a gap in the anti-nausea meds. She is plainly just not feeling well and is not really interested in doing much, partly from the chemo and partly from the meds to help tolerate the chemo. We are just trying to mark off the days with the least amount of difficulty at this point. Sorry we are not in a very verbose mood this morning. EK

On a positive note, Becca hit a milestone yesterday in that she lost her first tooth! She was pretty excited for the tooth fairy to come last night, and she was pleasantly surprised to receive a letter, gold coin, and blue elephant Zhu-fari pet from her. My, how things have changed since I lost my first tooth... TK



7.22.2012

Rear-ended

Ever been rear-ended while watching it happen in your rearview mirror?  If so, you understand the feeling of pure helplessness... knowing that the impact is really going to hurt, yet being paralyzed as you watch, cringing, unable to do anything about it.  That's how I have felt for the past few days.  I have been dreading this weekend, knowing that Becca is going to be "flattened" by the chemo, miserable with mucositis, and perhaps experiencing flu-like symptoms.  She has been feeling great all week, yet literally bored to tears. Friday night she broke down at bedtime, saying, "What are we going to do tomorrow, Mommy?"  I replied that we would probably do some arts and crafts, puzzles, and play some games, and she countered with, "Are we going to be here FOREVER?!  It's boring here!" with crocodile tears in her eyes.

We had a tough discussion about why she cannot leave the room.  She explained that she's not sick (which is true...  no fever and a good ANC), so I told her that we don't want other kids to get her sick before her bone marrow transplant.  We then talked about why she's getting a bone marrow transplant.  Her body's blood-making factory is not working, so some nice man is giving her some of his factory so that it can help her body to make healthy blood.  Becca wanted to know how they will take his factory and put it in her body.  I explained that for her it will not be a big deal at all... it will just go in through her tubey (central line) with no ouchies, and it will just look like a bag of blood hanging on her IV pole.  I then told her that for the nice man, he would get a pokey in his back, like she has had in the past, and they will take out some of his factory.  She processed that for a little while then asked who got her factory when they took some of her bone marrow out the last time she got a pokey in her back.  Oh, this is so hard to explain to a six year old!

So the rear-ending happened this afternoon.  Following Lily's visit this morning when Becca was feeling great, full of energy, and really enjoying playing with Lily, Becca started complaining of her tooth really hurting, actually screaming in pain (and this child has a very high tolerance for pain, mind you).  It will be the first tooth she has lost, so the feeling of a dangling tooth is new to her.  We thought that maybe the chemo could be exacerbating her nerve endings, so it could be making her more sensitive.  I asked the nurse if she had any Orajel or something similar they could give her, and we discussed if we should just pull the tooth to give her some relief.  The doctors wanted to avoid giving Becca an open wound in her mouth intentionally (which I totally get), so we decided on some Atavan to take away the pain a bit.  About fifteen minutes after taking one of her oral medications and getting the Atavan (also used to combat nausea), she began vomiting.  When she complained of severe stomach pains and kept vomiting, they ordered some Ben-Phen (Benadryl/Phenergan), and she fell asleep in the fetal position clutching her belly before 6pm, telling me, "I don't want to be me, Mommy."

Oh how I wish I could take on this pain for her!  It sucks.  I know it's "to be expected," but that doesn't make it any easier for Becca (or us) to endure.  Our daytime nurse today was working all day to get Becca some type of pain medication that could be used PRN, just so that when she needs it, she won't have to wait forever for the doctor's orders, etc.  Needless to say, it's now 10pm, and she still has no pain medication available.  I'll be bringing that up on rounds tomorrow.

At least we have a wonderful night nurse who is going to get Becca's anti-nausea meds double-covered over night, staggering them so that she's getting something every two hours or so.  The good thing is that she will probably sleep a lot, but the bad thing is that they need her to have urine output every two hours to make sure her kidneys are happy.  I woke her up around 7pm to go, and she vomited again upon standing.  Around 9:30, when I was debating trying to wake her up, she sat straight up in bed and vomited, so there was my opportunity to get her on the toilet without having to wake her up.  It's not easy to wake a drugged child up to go to the bathroom, by the way.  Wish me luck the rest of the night!  I can tell I'm going to be at the top of my game for rounds tomorrow...

It's time for my request to you:
Please, please keep up the prayers and positive thoughts for Becca and the rest of our family!  They have worked wonders so far, and they will be critical this week as we struggle through what we anticipate to be the trenches.  In the midst of the trenches, though, is "infusion day" on Thursday of this week.  This is the day when Becca will receive the bone marrow given by a 21-year-old male that could save her life.  We are so grateful to this young man, and though we cannot thank him in person yet, we look forward to someday expressing our gratitude for saving our baby.  We also ask that you pray for the donor's bone marrow to engraft well and for it to adapt to its new "home" without attacking the host (Becca).  Maybe some of you will wear your Becca's Believers shirts this week to remind you to think and pray for her often.  I'm wearing mine right now as I type...
TK

7.19.2012

Quick rant

I would like wad up a good number of the well intended CHMCC policy sections and bugger their authors with them.

7.17.2012

IN A WORLD OF BM

This stay is not going to be the slightest bit pleasant.


We apparently are in a different hospital.  It is a cross between a hostel for shell shocked adults and a hospital for unsuspecting children.  There is one large parent lounge that houses numerous refrigerators/ freezers, all of which are packed to the gills with the stuff of the 24 families on the BMT ward.  Connected to the lounge is the communal and sole bathroom and shower facility on the ward available to parents.  We are not allowed to use the toilet or shower in Becca's room.  It all has a nice European feel and odor to it.  There are other facilities sprinkled about the hospital.  Let's just say my coffee intake is going to go down.  


Becca is starting her chemo as I write this.  God forgive us for the terrible things we are going to do to her. Forgive me for what I am going to do Him when I see Him.  


We transferred over here last night and had a great start with her first medication. She had an allergic reaction to an anti-convulsant; the reaction was manageable and short-lived but did not make our first experience feel as special as we had hoped.   


We are not expecting any major nasty side effects to start until this Friday or so.  By Monday she will very likely be flattened and feeling like total crap.  As her mucous membranes begin to break down, her mouth will begin to spawn numerous bloody ulcers that we are told are highly painful.  Other soft and sensitive areas of her lower body will also affected.  Not much can done to keep this from happening, but they will have her on narcotics and various other velvet hammers to help her manage the severe discomfort. ek

7.14.2012

A nice reprieve, but cut short

Since my last blog post (you know, the really uncharacteristically negative one - sorry about that!), our family has taken a trip to the Cincinnati Zoo, played with cousins in the Chicago area (thanks Maria, Matt, and kids!), traveled over 2,000 miles by car, fished on several Michigan lakes and rivers, played at a few beaches and playgrounds, cruised around Lake Michigamme on a pontoon, picked eight quarts of strawberries (and attempted to pick wild blueberries), made 36 jars of delicious strawberry jam, hiked, collected buckets full of beautiful rocks, eaten Jilbert's ice cream next to the big fiberglass cow, shopped for cheesy UP souvenirs, visited a Michigan fish hatchery and iron industry museum, celebrated Becca's birthday three times, spent the day at both sets of grandparents' houses, seen Madagascar 3 at the movie theater, gone shopping, participated in multiple other little things.  Though these might seem like small and inconsequential activities to some of you, these are some of the things we have only been able to do since being "free" from the hospital. We have soaked them up, relishing the time with all four of us together, knowing that what we are facing in the coming weeks is going to take all of the strength we have. 


We have returned from our 10-day escape to the UP, and after Becca's first fun-filled "friend" birthday party at our house Thursday with a dozen little adorable princesses, we landed back on A5S Friday around 1pm due to a fever. We were scheduled to be admitted on Monday around 11:30, so this is an unwelcome early admission.  Ethan, Becca, and I all cried like babies yesterday when she spiked the fever and we realized this would be the last time at home for a LONG time.  I'm sitting under the horrible blowing vent (those who have stayed here know exactly which vent I'm talking about) writing this update right now.

So far, all of the blood cultures are negative, and Becca has been fever-free since 4pm yesterday.  The docs ordered Zosyn and new (to Becca) antibiotic that is an alternative to Vancomycin that is easier on the kidneys.  Becca had a repeat GFR on Tuesday, and though there was an improvement in her kidney function, she definitely still has damage, so we appreciate them using this other antibiotic.  She also had a full-body CT on Wednesday, and the doctors said everything looked fine.

Becca was on heavy fluids overnight (translation: she/I was up every hour to go to the bathroom), but they have discontinued them today.  Though she now has a stuffy nose, I have convinced them to not do a nasal swab yet or go looking for some type of infection.  In my "expert opinion," she picked up a cold/virus from either the hospital visits on Tuesday or Wednesday or from one of the princesses at our house Thursday.  Because her IgG level was relatively low the last time they checked it on June 20, tonight they will give Becca IVIG to boost her antibodies prior to the bone marrow prep. If she happens to have a virus, it will help with that, too.

So, the bottom line is that we are here on A5S until Monday, when we will move over to A5N (the BMT unit).  I'm looking at the positive side... at least we get to be with the folks we know and love on A5S for a couple more days before being thrown into a whole new environment with more restrictions and people who don't know Becca or us.  Also, it's a good thing Becca got the fever on Friday, when the clinic was still open, so that we didn't need to come in through the ED. Finally, Lily is having fun in Michigan (again) with her cousins, Uncle Jon and Aunt Renee, and Nanna B. and Poppa, rather than being shuffled around while we are inpatient.  Again, thanks for all of the prayers and positive thoughts for Becca and the rest of us... they are helping to lift us up and carry us through!  
TK



 Birthday celebration at Nanna B. & Poppa's house

 Snuggling with third cousin Emma

We love the manatees at the zoo 

Fishing lessons with Daddy on Lake Michigamme 

 The Falls River - a great picnic spot

 We found tons of beautiful rocks at Presque Isle on Lake Superior

Typical pic on "the rock" with a blooming Lily 

Kniskern totem pole 

 Cabin cuddle bugs

 The birthday girl, ready for the day

 Presque Isle breakwall - a lot less smoky than last year

 Blowing out candles on the Tangled cake

Princesses Becca and Avery