Thanks for visiting my site! If you're new here, you may want to subscribe to my RSS feed. Also, please sign my guestbook, my parents read all the guestbook entries and comments to me and I love to hear from everyone! If you or your child have Leukemia too, leave us a link to your blog - we love reading other Cancer Fighters stories! Thanks again for coming by! Love, Serenity

One of the things on my mental To Do list is to put up a page of websites and organizations for friends and families dealing with childhood cancer. Today I read about the Andre Sobel River of Life Foundation. Please take a moment to read about this very special organization.

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

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!

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.

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.

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.

I am so sorry to leave everyone hanging. Things have been crazy-busy, but Serenity has been ok. We ended up moving suddenly & I got consumed with packing & house hunting & forgot to update the blog.

Last week we had a clinic visit & things were uneventful. She had a lumbar puncture & received her IV Vincristine. Her ANC was only 700 (they like it to be at least 1000), but she has not been sick. She will have another blood draw this week to check her numbers.

She is finishing up her monthly 5 day pulse of dexamethasone, but it hasn’t been too bad having her on steroids. She has grown a inch since last month but her weight is still the same.

She’s particularly adorable these days so I will try and get some photos up.

Serenity has a stubborn cough, and is running a slight temperature. I really hope she’s not getting sick.

Tonight I was lying next to Serenity when she put her feet in my face. And the first thing I thought was that I love this girl so much, I even love smelling her stinky feet. There is a nurse at the hospital that, like so many of them, just has a way with children. This particular one is tall, probably in his mid forties, and has long greying hair pulled back into a ponytail. He goes out of his way to talk to Serenity whenever he is on the floor. At first she was intimidated and wouldn’t acknowledge him at all. In an effort to coax her out of shyness, he would ask her if she had stinky feet. Before long she would smile each time he asked and even laugh a little bit. At home whenever her feet are smelly we tell her, “We’re going to tell Irish about your stinky feet!” and she laughs, “No! Don’t tell Irish!” It has become a little game.

She was trying to stay awake so that she could nurse before falling asleep. She had just taken her medicine and so she knew she had to wait an hour before she could eat or drink anything. Every few minutes she would ask to see my watch. Although she can’t tell time she would study my watch intently for a few seconds and then announce, “Not time yet.” I was thinking about how well she (usually) takes everything in stride. She knows there are times she can’t eat because food affects how her medicine is metabolized. For her, daily medicine has become just a part of the routine. Doctor visits, hospital stays, the fact that she can’t do all the things her older siblings can do…it is all part of her life and she accepts it without too much complaint. I am glad, but it is sad to see. And I know that as normal as life is now, we will never again be those people we were before leukemia.

We had another clinic visit yesterday. It was pretty uneventful. The waiting room was jam packed when we arrived; there was not even room to sit down at first. I overheard the receptionist tell someone that there had been a code earlier that morning.

Serenity didn’t take long to warm up once the waiting room emptied out a little bit, and she got right to business making her craft. She was making a ladybug but instead of giving it legs she gave it as many googly eyes as she could squeeze onto its body.

She had gained a whole pound since our last visit! She has really had an appetite lately. I wondered why she was so hungry when she wasn’t on the dexamethasone but maybe she was going through a growth spurt.

Our doctor is out of town so she saw another doctor who adores her. On her way out of the examining room the doctor said, “Will you blow me a kiss?” and sweet Serenity ran over to her and put her face up. I don’t think the doctor understood but I knew Serenity was offering to kiss her, which made me smile.

Serenity worked on a puzzle while we were in the infusion room waiting for her chemo to arrive & several of the nurses were astonished at how well she put the puzzle together. It was a 63 piece Mickey Mouse puzzle, and I worked on it with her, but she does love puzzles and is good at finding the flat pieces to get the edges done first. I filled in things like the sky and the grass and let her figure out how to fit together Mickey Mouse.

After her IV vincristine we were ready to go. Serenity pitched a fit when it was time to take her line out. Phil hadn’t been able to come with us and Serenity wanted to leave her line in so that Daddy could see it. It was cute but sad to see her so worked up about it.

One funny story about her lab results - the nurse had told me that she would call me when Serenity’s numbers came back. I was in the gas station when my phone rang so I let it go to voice mail because I didn’t have a free hand to write down the results. The nurse left a message to please call her back because she “wanted to talk to me about Serenity’s lab results.” My heart just plummeted. I felt like I was reliving the phone call when we first had labs drawn on the day she was diagnosed with leukemia. Really, there was no logical reason for me to panic. If her numbers had been low I would have turned around and gone back to the hospital so that she could get a transfusion. As it turned out, the nurse said she didn’t want to leave the numbers on the voice mail because she couldn’t tell from my greeting if she had the right number. I wanted to say, “At least say EVERYTHING IS FINE when you leave a message,” because I had been so scared.

We are back on the dexamethasone this week so I’m preparing for some late night eating and an increase in temper tantrums. As far as her 6MP goes I try and feed her dinner by 6 and then have her fast until 8:00. Then I give her her medicine and she can go to bed or play around until 9:00 when she can nurse. It’s hard for her to fall asleep without nursing but she is a pretty good sport.

8:00 PM fervently hope Serenity will put down the oranges and not ask for any more macaroni
8:30 PM realize you are asking for the impossible
8:45 PM pry oranges from her hand and help the littles brush their teeth
9:00 PM lie down with kids to sing songs and nurse Serenity
10:00 PM offer up a prayer of thanks that finally everyone is asleep
11:30 PM wish for bed and remind self that in 30 minutes you can wake her up for medicine
12:00 AM try and rouse a sleepy girl
12:10 AM continue in the hopes that she will open her eyes
12:15 AM try to explain that it is time for her to take her medicine
12:17 AM try and calm her tantrum while keeping her awake
12:25 AM offer a different drink to wash it down in an attempt to bribe her into taking her medicine
12:30 AM wonder if forcing it down would have been better
12:40 AM recoil when she spits most of her chemotherapy in your face
12:45 AM re-dose the medicine
12:50 AM breathe a sigh of relief and break the news that she cannot eat or drink for 60 minutes
1:00 AM beg a now wide awake girl to please go to sleep
1:15 AM try to remain patient when she becomes hysterical
1:17 AM agree to sleep alongside her on the floor
1:20 AM agree to move to the other side of the room (still on the floor)
1:25 AM give up trying to please her and try not to nod off while she throws a tantrum
1:30 AM look at the clock and laugh that you’d hoped to catch up on sleep
1:40 AM keep one eye on the clock and know that if you hold out for another 10 minutes it’ll be ok
1:50 AM announce that she can nurse and climb into bed hoping she will do likewise
1:52 AM nurse a sleepy child
1:55 AM contemplate the insanity that is your nighttime routine

I have an confession to make.

We haven’t always been giving Serenity’s 6MP the way we are supposed to. Actually, I do not think that the clinic gave us any instructions aside from not combining it with dairy or citrus products. But I knew from my friends on the ALL list that it is supposed to be given 2 hours after a meal or 1 hour before (always on an empty stomach).

We tried. We tried hard. In the beginning we would wake Serenity in the night to give it to her and she did NOT like it. She would kick and scream and spit it back into our face and we quickly decided that trying to get it in her at night was pointless.

So we switched to just before bed. I should mention here that she usually nurses to sleep, but I consoled myself with the knowledge that breastmilk is not the same as cow milk, and honestly, getting her to sleep without nursing is near impossible. (Actually it IS impossible if I am also trying to get the other little ones to bed.)

So I had gotten a little lax and there were even a few times that she ate before taking the medicine, but she is so thin that I wanted to let her eat whenever she was willing.

So lately on the list there has been some discussion of just how very important it is that the 6MP (which she takes daily, by the way, and will for 2 years) be taken on an empty stomach, at night, and especially not combined with dairy or citrus. And I started to worry and feel guilty and I followed the links and started looking at some of the research.

From what I can tell the compound in cow milk that interferes with the 6MP absorption is also found in breast milk. And it really IS important that she take it on an empty stomach. So I feel horrible, knowing that I should have been more stringent about all of this.

So I’m working on getting her to take it after she goes to sleep. She still doesn’t like this, so what I’ve been doing is giving it to her before bedtime, but then waking her up a few hours later and giving her a small dose of water. That way it doesn’t matter that she spits it out and gets upset. I’m hoping after I’ve done that for several nights, I can transition to just flavoring for a few nights, and by then maybe she will be accustomed to it and fight less. At that point I can start giving the medicine along with the flavoring.

I’ve explained to her that she can’t eat after she takes the medicine, and she understands and is being a good sport about it. It’s still hard to get the timing just right, because she still expects and needs to nurse at bedtime. Phil & I think that getting a timer will help so that we can “show” her when she can eat or drink again. And from here on out, I’ll just do better.

After the last time I posted I came to the conclusion that Serenity was probably having an allergic reaction to her Septra. I didn’t / don’t know that for a fact, but I was pretty sure of it.

On Monday she was due for a CBC and Home Health informed us that we now have to pay out of pocket for home visits. So on Tuesday we took her up to Primary Children’s for the blood draw. Her legs were bruised and she seemed less energetic, so I was fairly confident that she would need a transfusion of something. As it turned out she did not; her numbers were fine.

I think the doctor and the nurse were a little impatient with all our questions. It was a busy day and they had worked us in and I kept explaining over and over that something was not right and that her symptoms didn’t make sense. The nurse insisted that it is not uncommon for the kids to get rashes that come and go during treatment for no apparent reason. I did not mention that I hadn’t given her her Septra that week because I wanted to see what would happen to her rash.

I mentioned in passing that we had not given her her dex yet because of the rash. The nurse just about fell off of her chair. Apparently when they said “hold everything,” they meant her chemo but not her steroids. I didn’t know at the time that the dexamethasone is timed to coincide with the day she gets IV vincristine and the 4 days that follow. (She had received her vincristine a few days previous.) There was much discussion about what to do and the doctor ended up coming in to see her and tell me to go ahead and start the dex.

We also resumed giving her Prevacid, which I think is what’s helped keep the vomiting at bay. I told the nurse about her bone pain and she said it could be a side effect of the vincristine, along with jaw pain. That made sense because she had complained about her mouth also and it did happen about the same time she received the vincristine.

Serenity is doing well and back to taking her oral chemo as well (methotrexate and 6MP). Her rash has gone away again. She is due for more Septra tomorrow and the next day, so we will see what happens when I give it to her.

We have so much else going on right now. Life is crazy and it is such a relief to see her doing so much better.

Serenity threw up several times during the night and neither of us got enough sleep.

This morning she seems to be feeling better but her rash has worsened. She has even more spots and they are red and very painful looking.

Serenity has been feeling pretty good, aside from throwing up every once in awhile (for no apparent reason).

Today we had a clinic visit and her spots are back yet again! It is possible to scrape one of the lesions and test for varicella (chicken pox) but none of hers looked especially “juicy” and since she has already had a course of the acyclovir the doctor decided to keep holding her chemo and see what happens in the next few days. She did get her vincristine today, but hasn’t had methotrexate or 6MP since this all started, and he is particularly leery of putting her back on the steroids if she is fighting something. (She was due to start steroids today.) So the plan was to wait and see and check with the clinic Monday.

Serenity got a huge stocking at the hospital today, filled with candy, a Barbie, art supplies, and all kinds of other goodies. The stockings had been donated by students in the University engineering department. She also got a new hat, and received so many compliments on it! We think she looks especially adorable in it.

We were in and out very quickly but did get a call when her labs came back that her ANC is 0.1 (very low). It means she is very susceptible to illness right now. So instead of resuming treatment on Monday, she will be getting another CBC and then decide what to do.

Her appetite hasn’t been much this past week. She weighs the same that she did last month, and her weight for height is good, but the dietitian did want to speak to us because she would like to see her weight trending upward over time and instead it has been constant.

I’m a teensy bit nervous about her getting hospitalized during the holidays, and the day after Phil and the 3 kids are going on a 5 day camping trip. So think positive thoughts for us!