5.25.2012

Good things and great people

We had a great night at the Landen LaRosa's on Wednesday.  Thanks to everyone that came out to the restaurant or carried out.  What a crowd we had!  Friends, family, neighbors, and even some great folks from Shaker Run.  We feel very lucky to have such a caring and active support network, and a special thank you goes out to Kami B for arranging the fun night.  Another thanks to LaRosa's and the management team (including Stacy) of the Landen location for their sponsorship; the LaRosa's folks continue their long tradition of community involvement.

Kara M. and the Pharmacy Department of the Milford Kroger also helped out our family by donating food and staff to a car show at Kroger last weekend that accepted donations for Becca.  We really appreciate your time and support!

Right now, we are mostly soaking up and banking every sweet bit of togetherness in preparation for the dry spell that is to come (but we are trying to not think about that right now). The astounding love and support that we have received makes that possible and keeps me from selling myself in the park.

Today is also the Hoxworth blood drive at J.F. Burns Elementary School.  I am going to donate to help all the good little boys and girls on the other side of the mountain...ithinkican ithinkican ithinkican.  EK

5.21.2012

What a weekend

Becca has been glowing since getting in the car to come home Saturday morning, and not from the chemo. She is so freaking happy that she makes everyone around her feel like they are walking on air. She is so much physically stronger than we thought possible. She is staying on her feet and walking alomost all day.  Though she gets pretty stiff after she takes a break, she loosens up in no time.//

We spent Saturday night making cookies, eating fish sticks and tater tots, and watching Laurence Welk on TV. The girls love the darn show; it is amazing what they choose to watch when you get rid of cable and dish. We mostly watch PBS, if anything now.  Why did we not do this sooner?!//
First night at home with pillows courtesy of the Dunn family - thanks!

Last night, we had most of my family out and had a nice little meal of carnitas with your choice of cumin roasted pulled pork or braised beef tongue, all with a fresh guacamole. The tongue was very impressive, tender and succulent; who would not love the food that tastes you back. We followed it up with a camp fire and s'mores.//

Thanks to the J.F.Burns PTO and the Book Blog Club for putting on a lemonade stand during their Laps for Literacy on Friday.  Becca, Trisha, and I surprised Lily in the afternoon when Becca had a four-hour pass from the hospital.  She REALLY wanted some lemonade, and she was such a celebrity when we arrived at her school.//


Thanks to Kami B. and LaRosa's for arranging the fundraiser for our family that is taking place this Wednesday, the 23rd from 4-9 PM at the Landen LaRosa's on 22&3. We are planning on being there around 6ish and will hang out as long as we can. LaRosa's is donating 20% of the proceeds to us from 4-9 for dine in, carry out, or delivery. It says that you must present the flyer to the server, cashier, or driver. Please come one and all and join us; we will have some flyers at our home and will bring some to the restaurant as well. If you are an organization or business that would like to make a large lunch order during the day, they will honor it if you mention Becca's fundraiser.//

More big thanks to J.F. Burns and Katina Peters and Hoxworth for hosting the blood drive at J.F. Burns Elementary this Friday the 25th from 10-4. I must admit that I am not very brave when it comes to needles (or hornets and wasps, since I am confessing) but I AM going to go donate Friday. I really would have donated sooner but I was afraid of being too weak while staying with Becca, and I needed to clean the house, wash my hair, and organize the DVDs. So I WILL donate this Friday, unless of course it is raining or too hot outside. To schedule an appointment, visit:  www.hoxworth.org/groups/jfburns . There is also a blood drive at Loveland Christian Church on Lebanon Rd. this Thursday arranged by Cindy F. from Loveland Schools.//


Trisha is overwhelmed by the number of thank you notes she feels like she needs to write. This is in most ways a very good position to be in. The amount of love and caring from everyone has touched our family more than you will ever know and more than we could ever express in a short note. Those of you that have Trisha's contact info, please shoot her a note, or post to this site, releasing her from her self-imposed obligation of responding to everyone. She is going to beat the tar out of me for writing this, but I hate to see her beating herself up for feeling like she is letting people down by not quickly responding individually to everyone with our sincere gratitude.
EK

5.17.2012

Getting a break

Well it looks like we will be getting a much needed break and will be heading home for a week or two on Monday! We will need to check in with the clinic a few times over our home stay but we are not complaining one bit. She also will not be connected to anything that drips, beeps, bonks or honks outside of some periodic overnight potasium spiked fluids. Becca is very very happy about going home and getting to see Lily and Mommy more. She will still be quite limited as to what she can do, we look at as a risk/benefit equation when selecting things to do and places to go. One little infection or slight fever and we are back in the box faster than you can say "pudding pants".// We are getting home nursing again and all the gear that comes along with it. Last time we donated several large boxes of our surplus medical supplies to Mathew:25 Ministries for the Hatians. Lets just say that the massive first aid kit that I carry on trips is capable of allowing for a wide variety of sterile operations and procedures.//

5.15.2012

It's all good!

What a wonderful day!  Let me recap...


  • Becca's bone marrow aspiration and biopsy that was scheduled for 1pm was moved up to 9:15am.  While this doesn't seem like a big deal, you try telling a five year old who really wants to eat and drink that she cannot have anything for five hours straight.  Luckily, we only needed to do it for about 3.5 hours, as we didn't really get into the OR until around 11am.  
  • Talked to the bone marrow folks, and they are very pleased.  According to the doctor, there are "lots of matches" for Becca.  This means they are a 10 out of 10, and now they are busy contacting some of the matches to see if they will be willing to be tested (donate a few teaspoons of blood) to determine if they are a KIR mismatch for Becca.  This is what we want... a perfect HLA type with a KIR mismatch.
  • Becca's counts went up ON THEIR OWN today!!!  Her ANC (Absolute Neutrophil Count - neutrophils are white blood cells that fight off infection) has been hanging at ZERO since she had chemo many weeks ago.  Today it was 20!  Though it's not a huge jump, it's finally heading in the right direction.  We are hoping that this number trends up over the next several days, and if she can get to 500 (or so) without a fever and be off antibiotics, we might get to go home for a week-long break from the hospital before the next round of chemo.  In addition, Becca's platelets went from 47K to 76K today without a platelet transfusion!  I believe this is the first time her platelets have actually gone up on their own since we were admitted at the beginning of April.  
  • We got results from the bone marrow aspiration and biopsy this evening.  There were NO BLASTS!  Dr. Absalon said that we got the best results we could have from today's test, in that normally he sees the same type of cells in the bone marrow of leukemia patients, yet in Becca's marrow taken today, he saw lots of different types of cells.  This means her bone marrow is starting to do what it's supposed to do again and "be a factory," as Ethan would say.  Becca's reply to that is, "I'm NOT a factory!"
  • Finally, we moved to a new room (actually, the one we moved out of to go to the ICU, but that they wouldn't hold for us)!  It's so much quieter (no banging), darker (has an ante-room), and it actually has a nice view of Burnet Avenue from the window, rather than the brick wall of the other side of A5S.  Another bonus is that it is across from the playroom, so toys, movies, and arts/crafts are much closer. 
Thanks so much for all of the prayers for NO blasts today!  They did the trick beautifully.  I never considered myself superstitious, but I'm sure going to wear my Becca's Believers t-shirt every time we need some good news from now on...

5.14.2012

Mother's Day


Becca was looking forward to Mother's Day all week, because she had made me a surprise on Wednesday, which she hid somewhere in her room.  Though she mirrors her daddy in many ways, unlike Ethan, she can actually restrain herself from giving gifts until the special day they are due.  So... first thing Sunday morning, Becca's head popped up, and her sweet voice intoned "Happy Mother's Day, Mommy!"  She then pointed to the shelf over our desk so that I could retrieve the beautiful card she made earlier this week (see above).

Becca spent the morning Saturday with Nanna B, which allowed Ethan to attend the Butterfly Walk with Lily, me, approximately 90 Becca's Believers :), and thousands of others to support childhood cancer research.  It was an emotionally-charged, yet simply amazing day.  We finally had perfect weather, too.  A huge thanks goes out to everyone who supported our team by registering, attending, or donating to CancerFree KIDS!    Great job to the many team members who ran the 5K and Junior Jog, too... some even won prizes.  I surely admire those runners (as my girls will tell you, I only run when someone is chasing me).  Special kudos to those team members who were also fundraisers... you helped to put us way over our goal, and we even came in as the third highest fundraising team with more than $3,645!  I loved what one of the women who spoke at the event said (well, it went something like this): "Wouldn't it be great if someday our kids will only know about cancer because they are reading about it in their history books?!"  That WOULD be something!!!

Unfortunately, shortly after I arrived at the hospital with Becca Saturday after the walk, a fever showed up, too.  She had been without fever for a good week and a half, so this was a shocking blow.  Of course, all of the blood cultures had to be sent, then the viral and fungal studies, too.  Ugh!  Today she woke up to a pokey (peripheral IV) being started so that they could put in contrast and do a full CT scan at 9am.  Luckily, nothing showed up, but the doctors want to rule out fungal infections, since she is likely covered for bacterial infections with her meds.  They are going to switch things up a bit, as she has been on the same antibiotics for a long time (last I heard, she was on day 35 of Vancomycin - wow!), and her body can become resistant to antibiotics.

Tomorrow (Tuesday) Becca is scheduled to go to the OR for a Bone Marrow Aspiration to check for leukemia cells in her marrow.  I keep thinking, "No blasts, no blasts, NO blasts," reminding me of the old game show Press Your Luck, where contestants yelled, "No whammies, no whammies, NO whammies."  Please pray along with me that she has no blasts, and that her counts are not coming up simply because her bone marrow is wiped out, and not because the blasts have taken over. I'm planning to wear my Becca's Believers shirt tomorrow in hopes that it is good luck.  Feel free to join me in praying for no blasts, no blasts, NO blasts (and wearing your t-shirt, if your laundry schedule allows).

Many of you have asked when Becca will be able to come home...  That's a difficult question to answer.  If the leukemia cells have indeed invaded her marrow, the doctors will likely start up with chemo again, which means no break.  If no blasts are found, they will give Becca another week and then check her bone marrow again.  The goal is to let her recover before starting chemo again,  but if the cancer cells have a mind of their own and are taking over, they'll need to push forward with treatment.

We are still waiting on news from the Bone Marrow Transplant folks to know the likelihood of finding a match for Becca.  I feel like we should have already heard something, as they promised us that we would hear preliminary numbers ten days after "signing on the line" with them for the clinical study.  I'll ask about that tomorrow when I am there during normal business hours.

As far as how Becca looks... I think she looks fabulous.  Her coloring is good, her lips are pink (which Dr. Adams was absolutely thrilled about last week), she is beautifully bald, and most of her bruises and wounds from IVs are finally starting to heal.  Becca is smiling, giggling (oftentimes uncontrollably), full of energy, and very pleasant, despite the things they are doing to her.  I am inspired by her strength and her ability to keep her spirits up, even though she is stuck in a tiny room while others get to go about their lives outside the four well-decorated walls she sees.  This morning our phone conversation started like this...
Me: "Good morning, Becca Boo!  How are you?"
Becca: "Good morning, Mommy!  I got a pokey (with no whining or tears in her voice at all)."
Me: "Oh, I'm so sorry you had to get a pokey, Sweet Pea."
Becca: "It's okay, Mommy (in a matter-of-fact, if not comforting way). It's okay."

Oh, I need to send out another heartfelt thank you to those people who have so generously donated their blood at one of the blood drives (thank you Loveland and Kings Schools!, as well as the Butterfly Walk) or on separate occasions at Hoxworth as individual donors.  I know it's not easy to do, especially for those of you who are afraid of needles or who have never donated before, but it is literally SAVING HER LIFE!  Becca's body has been chewing up platelets constantly, and she's been receiving them every other day (at least) as well as packed red blood cells every few days.  If you haven't donated recently and are healthy, please consider giving this gift... kids like Becca can really benefit from your healthy blood.

I will close with a few pics to hopefully brighten your day...



And finally, a short video clip...



5.09.2012

Molasses

We are currently in the phase of treatment that tests our ability to endure periods of extended boredom. So much of what we do as patients revolves around warring with recurring stupifying monotony punctuated by hyper-intense stressful battles. Good thing Becca is such a good patient and well suited to enjoying what ever pleasures are available.// The only real exitement that we have had over the past couple of days was when she had a reaction to a batch of platelets. About half way through the infusion she began to get a tummy ache, very hot, coughing and wheezing, and just plain agitated. Half hour after the infusion was stopped and a hit of albuterol later, she was back to normal. The Docs ordered a batch of blood and unrine tests to try to determine what it was in her or the platelets that caused the reaction. No news yet, and I have been led to believe that it is unlikely that anything will come of them.// We Hope to see many of you this weekend at the Butterfly Walk.

5.06.2012

Loving the Gifts

Outside of some seemingly random puking and belly pain, Becca is looking and feeling very good.  Her counts continue to be at zero.   We are hoping to get out in a week or two for a bit of a break as a whole family if her immune system recovers in time.  As Becca continues to feel better, she is really starting to enjoy all the goodies folks have sent to her; they greatly ease the boredom and bring out lots of smiles.

She has adjusted to having a shaved head and all the little hairs are falling out easily now.  Becca liked the idea we came up with... to scatter her locks around in our yard for all the birds, bunnies, and mice to make soft beds and nests for their babies.  Lily and Trisha did this last week to Becca's great pleasure; she is waiting for a report as to if her hair is still in the grass.

Shaker Run Golf Club is going to be doing a golf outing/scramble for Becca on Sunday, June 24, in the afternoon.  Any golfer interested can contact the proshop at 513.727.0007.  I do not have any more information regarding specific times or cost at the moment, but will get that out as soon as I know.

Also a big thanks for the overwhelming support of Becca's Believers and CancerFree KIDS in the Butterfly Walk coming up next Saturday, May 12.  I am not sure if I will be able to make it, but it is still worth going even without me being present.  It really is a great deal of fun for everyone.  Let's hope for sunny warmth this year!  

 Thanks to Becca's show choir friends for the cool Minnie ears with tiara and veil!
Becca's self-portrait... everybody is right, she does look like Daddy

5.04.2012

6 donut gems, a bag of Cheetos, and orange pop

 Yes... that was what Becca inhaled after waking up from the anesthesia following her nasal washout procedure today.  She kept telling everyone she was hungry and "starving," so as soon as she was given the "go ahead" by the PACU nurse, she proceeded to shove one chocolate donut after another into her mouth, until she had eaten all six in a matter of about ten minutes.  She quickly followed that with a bag of Cheetos and a few ounces of Fanta.  Amazing, considering this little one who cannot even take a bite of her peanut butter sandwich during her 20 minute lunch at school because she "doesn't have time..."

The ENT doctor (crazy that it was the same doc that did Lily's tonsillectomy/adenoidectomy and was scheduled to do Becca's at the beginning of April) said the procedure went well.  They cleaned out her nasal passages and sucked out the mucous, sending some to the lab for cultures.  All was clear... not the green or yellow color of infection, and she didn't bleed more than a few drops.  We were relieved that she didn't need a transfusion, as they had prepared us that she might.

The hardest part of the whole procedure for Becca was the peripheral line that she found in her right forearm upon waking.  She was quite ticked off (to say the least), and I could hear it as I approached the recovery room.  Luckily, the PACU nurse got the dressing and IV out very quickly, and Becca got a little sidetracked by the eating I mentioned above.

Before the procedure, we concentrated on arts and crafts and other activities to distract her from the fact that she wasn't able to eat or drink all day.  The rest of the day since her OR time has been spent recovering from the insult of being poked again and made to go to sleep with Propofol.  She has never liked the feeling the white, milky drug gives her, and today was no different.

So far, so good tonight... no fever, not congested, a full tummy, good numbers on the monitors, and asleep at a decent hour. Life is good!
TK

5.03.2012

OOPS!

Trisha and I had a nice afternoon and evening yesterday, as Trisha's mother stayed at the hospital. We were able to both get a massage and then get a Lily for the night! I made a nice little meal, on request, of seared walleye and sea scallops with an avocado and citrus relish, toasted basmati rice, and fresh corn, washed down with a nice bottle of riesling. All in all, a good night topped off by getting to go outside and throw a ball with Lily.// Becca has gotten a couple of fevers over the past 48 hours, which means she is getting the "water boarding" (aka sinus washout). Bummer... that is not going to be fun, but at least she will not be awake for it. She continues to need lots of platelets, and they are going to be packing her full of them prior to the procedure to help control any possible bleeding. Remember Hoxworth Loves You The main thing she is not going to like is that it is scheduled for 2:00pm, which means nothing to eat or drink all day. You can offer her food and drink all day and she won't touch a thing; tell her she is not allowed to eat or drink, and suddenly she is famished, parched, and ticked. Ghandi she is not.// We were able to get out of the room for a while today for some PT and OT work in the gym. It was great... she is much stronger than she thought she was. It was really a pleasure watching her on the swing...until....OOPS! Her line got caught on the corner of the matting below the swing and ripped off one side of her central line. This is NOT a good thing to happen at all. All the time when she had a line in the past, we did not leave the house without a pair of hemostats in our pocket, just in case. Fortunately, the oops did not pull at the stitching in her chest, thanks to an adhesive clip and good engineering that allowed it to break off right at the joint of the two lumens. It was several moments of panic as the OT (who is really wonderful and felt terrible) scrambled to get some help and stop the leaking. I was able to find the clamp from the broken line and work it on above the branch to get it pinched off. Effective, but not pretty. Becca hardly noticed anything wrong until she saw the look on my face and a little bit of blood; then she was pretty worked up and scared. The best part of the bad situation is that the line was able to be repaired without going back to the OR to get a new C-line put in and the old one removed. I just hope that my nonsterile clamp job does not cause an infection. Never a dull moment...// P.S. The Mamma Mia! folks ended up cancelling their visit. Evidently, the entire cast is passing a bug around. I guess the show must not ALWAYS go on. It was a nice thought, and a big thanks to our good friend Kara for arranging it. EK

5.01.2012

5/1 morning

Sorry I have not written in couple days; afternoons have been a lot more full now that Becca is feeling better. It is hard to write much when the DVD needs to be changed every fifteen minutes. "I find television very educational. Everytime someone turns one on, I go read a book." Groucho Marx.

Becca had a very emotionally charged make-over with Daddy, as her hair began to fail we talked about it and decided to shave it off. Her body pretty much began ignoring it, and it would become felted into a mat on the back of her head because it was so dry and scaled. It was also covering her pillow and getting into her mouth and eyes. She really does miss her hair; yesterday was pretty rough. Every hour or so she would sob, wishing she had her own hair again. The good news is that she is absolutely beautiful bald. I try not comment about how similar we look, but it is hard not to notice. Though she certainly does not look like a boy, it is on her mind. If anyone comes to visit, please don't mention that she got her lovely head, long eyelashes, perfect ears, and big brown eyes from her Daddy.

She has had some tummy aches and has recently developed a nagging cough. Being on a cancer ward, you are not allowed to have either without getting a list of tests on your bodily fluids, an ultra-sound of the abdomen, and talk of a sinus lavage and another CT. Sinus lavage is a bit like water boarding except you are sedated, and the person doing it is wearing white. Many of her treatments are essentially enhanced interrogation, just itemized as something therapeutic. But truly, the people caring for her here are really great. It is obvious that even the most seasoned attending gets emotionally attached to their patients and deeply cares about their comfort. We have seen many of her Docs tear up with the arrival of some good news.

Trisha and Lily are coming over tomorrow. Lily is getting to play hookey for the morning, a perk of getting all A's in her classes. KLSD, especially JFB and the PTO, has been very understanding and supportive of the situation. If I were to thank everyone and every group that has been understanding and supportive, I would be writing for a hundred years, but please know we are extremely grateful. EK