Be the Match Marrowthon

Many years ago when my mom was diagnosed with multiple myeloma I decided to register as a bone marrow donor. There is a $52 fee for the testing kit, and each time I thought about donating I put it off a little bit longer. Years have gone by and I still haven’t been tested.

The National Bone Marrow Registry has set a goal of 46,000 new members. Until June 22, or until that goal is met, you can register as a bone marrow donor for free. (A donor is covering the testing kit fee.)

I’ve registered already, and I hope that you will consider too. I hope that Serenity will never need a bone marrow donation, but it is a very real possibility, and finding a match isn’t always easy. The test just requires you swab the inside of your mouth, and then mail the swab back for testing.

Please think about becoming a bone marrow donor at http://marrow.org

A Day in the Life of a Cancer Kid at the Clinic

This Saturday is Serenity’s 1 year survival anniversary! I’m planning on doing a couple special posts for that day.

For her last clinic visit of her 1st year (which was last week) we took tons of pictures of her going through the Clinic process. Keep in mind that last year when she first started going everything was horrible and it was nearly impossible to get her to do anything. Now she goes through the routine pretty much on her own! We’re so happy for her for how well she’s doing! We know it could be much worse (as it is with some of our good friends we’ve made since being diagnosed) for her and we’re very grateful that we haven’t had major issues – not sure how we’ve gotten by without any MAJOR hitches so far.

So, with no further adieu and without anymore waiting:

Crashing out on the hour drive to the Hospital.

In front of the hospital with Mom

Outside the Hemo-Onc Clinic door

Making crafts while we wait for our room (they have several GREAT volunteers that sit in the waiting room and entertain the kids)

Starting the check-in guantlet run – getting measured…

Getting weighed….

Blood Pressure….

Picking out a toy…

Finally in our room! Now the fun begins…

Getting stickers made from her admin bracelet – since day one she has always had them make her extra stickers, she puts them on her shirt.

Getting prepped for port access…

Accessed, getting blood draws…

Getting chemo through her port…

Her AWESOME Oncologist, Dr. Fluchel comes to visit and do her checkup.

Then it’s downstairs to the RTU to visit her favorite Nurse, Dahlia, who always showers her with stickers, toys, tattoos and whatever else she can find – we LOVE Dahlia!

Waking up from anesthesia and having a Lumbar Puncture done…. NOT fun.

Pretty much recovered thanks to the help of Cheetos and Gatorade! Now it’s time to go home after a 5 hour day at the hospital!

She checked out great at her visit, excellent blood counts and growing well!

Update – Almost a year!

In a couple weeks it will be Serenity’s one year anniversary as a Cancer Survivor!

It’s been a while since we’ve updated the site, things have been going so well lately that there hasn’t been much interesting to blog about. Currently Serenity is a happy, healthy, enthusiastic almost 3 year old with a huge love of life! We’ve recently moved even farther out in the “country” to a great place on 50 acres with lots of animals and room to play. She plays outside so much lately that she already has a tan that most people would envy!

She is SO PROUD of all her new hair! She loves to style it to make a little unicorn horn out of her bangs. At the same time she really wants to be like Daddy and thinks she should still have her head shaved. Every time I shave my head she begs me to shave hers. 🙂
After almost a year of regularly taking chemo, and considering how difficult it was a year ago to get her to take it, she is a real trooper about taking her meds. She still has to take several medications each day, depending on the day of the week. Every night I wake her up at midnight to give her her chemo. I just slip the syringe in the corner of her mouth and she either sucks it down or takes it from me and gives it to herself. It’s so nice to have her just take it now and not have to fight over it. Cancer sucks but having made it a year it’s become fairly routine.

Cute little one

Serenity is so cute lately. She says the funniest things. The other day we were outside and it was cold, and I said that my nose was cold. My 4 year old said that her arms were cold. And Serenity stated that her elbows were cold. She had a jacket on, and it just seemed so funny.

And the other day I had the door shut. She came in the room, angry that the door had been shut, and wanted to know why I’d shut it. I said, “Because I don’t want everybody coming in the room right now.” She said, “Not everybody! Just one person! Just Serenity Burns!” When she says her name it sounds like “Retty”. She loves her name and goes around saying it all day long, reminding us that she is “Retty Burns”.

We have a clinic visit on Thursday. I expect it will be quick and routine. She has been complaining that her legs hurt the past few days. Also one eye looks pink, I’m not sure why and she hasn’t complained about it.

She balances being ridiculously adorable with throwing ridiculously frustrating tantrums several times a week. Or in the case of days like today, several times a day. But her cuteness makes up for it.

March

I haven’t updated for awhile because we’ve been busy getting settled. We found a place about 15 minutes south of where we were living before. It’s a little further away from the hospital, but the area
makes up for that. I never thought we’d be weighing distance to the childrens hospital in our decisions about where to live, but there you go.

We are further out in the country & surrounded by 50 acres of horse property and farmland. Our landlord lives next door, so the kids have convenient access to his horses, cats, and chickens. The little
ones are loving it!

We got 2 puppies about a week ago, and they are a lot of fun. They tend to get a little rambunctious around Serenity, but when they are calmer she loves to play with them.

March’s routine clinic visit was just that. Serenity’s numbers looked good and we were in and out of there fairly quickly. Her ANC was on the low side (0.7) but nothing too troubling. She is still getting
100% dose of her maintenance chemo. (During maintenance the oncologists want her ANC to stay within a certain range. If her ANC gets too high or too low, they will adjust the dosage accordingly. The
trick is to give the most chemotherapy possible while minimizing side effects.)

Our insurance will not cover Serenity’s care until May 1 because of her pre-existing condition, so we have to make the drive to the hospital for even routine blood draws as well as her treatments. Like so many things in this area, it makes no sense, financially or otherwise.

Serenity is getting better at taking her medicine in the middle of the night. Phil has taken over the job so I am getting a little more sleep. I am still exhausted all the time these days, though.

Last week Serenity ran a fever of 101 and had diarrhea. After a couple hours of it I called the hospital and they told me to bring her in. Even though she was feeling pretty good aside from the diarrhea, it
was a difficult time for her. Once we got into the examination room she clung to me & refused to cooperate for the exams. When the doctor came into the room she burst into tears and was inconsolable. She continued to fuss throughout most of the visit. The nurse practitioner ordered fluids for her, and a dose of Rocephin, an antibiotic. They took blood and stool samples to test for several things, then let us go home with instructions to call if she started feeling worse or her fever continued beyond 24 hours. Fortunately she was feeling substantially better the next day and is back to her sweet, goofy self.