Category — General

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A few weeks ago Serenity started behaving really oddly. She would scream for hours every day about various things, often because she was hungry and didn’t know what she wanted to eat. She had trouble hearing us, and would often throw things and hit people. It seemed like nothing we did would serve to calm her and it was very frustrating after many days of it.

At one point I spent some time researching the symptoms of a brain tumor, because her behavior was so unusual. We wondered if it was a delayed effect of the chemo, but that didn’t make sense since she has been off chemo since the end of July. Finally it occurred to us that she might have an ear infection and so Phil took her in. She does have a double ear infection, poor girl.

Since we have had her on the antibiotics things have calmed down a lot. She is more like her normal sweet self. She complains of leg pain sometimes - almost always the same leg - which makes me worry about AVN. The clinic has yet to do a follow up EKG which I am anxious for as well. But overall, things are good and we are enjoying the days with our sweet children.

I’ve been feeling frustrated about things I cannot control. Sweet Brinley had a lemonade stand several weeks ago that raised over $6,000 for childhood cancer research. This was so amazing and touching to me. The next morning I woke up and saw all over the news that our current governor had received $700,000 in campaign contributions that same day. I know the two are totally unrelated, but it bothered me A LOT that there is such a huge discrepancy between where we as a society spend our money and where we SHOULD be spending it.

Yesterday I went to sign up for the National Bone Marrow Registry. A local boy I do not know had decided to host this for his Eagle Scout project, and someone had left a flyer on my door. The test was simple: 4 cotton swabs were used inside my cheek to collect cells. The family of this boy was willing to cover the cost of the test ($100). When I arrived at the location I was the only donor in the building. I wanted to run outside and yell at the world, “WHY isn’t everyone in here donating?”

I understand it is a commitment that maybe not everyone is willing to make. By signing up, I was agreeing to donate circulating blood cells or bone marrow for anyone who is a match, until I turn 61. But these donations save lives! They save the lives of people who will DIE without a match. They save the lives of little innocent children with leukemia. (Serenity did not need a bone marrow transplant, but many children do. If she were to relapse someday she very well might.) The donation is USUALLY done via blood nowadays, not even bone marrow. I was just shocked and saddened that this event did not get a better response. Maybe people really don’t care.

The last few weeks have been rough for Serenity. She has been fighting off viruses left and right. First she had an eye infection, with goopy eyes that were sealed shut every morning. For that we had to hold her down and administer eye drops (ciprofloxacin). She hated it because the medicine feels like it’s burning her eyes. She has also had this persistent, barking cough for weeks now. In addition to the septra, mercaptopurine, and methotrexate that she takes regularly, her pediatrician put her on a nasal spray medication (fluticasone) and an oral antibiotic (Amoxicillin) to help with the cough. When there was little improvement, the doctor put her on first an inhaler and then a nebulizer (Albuterol). A week later, the doctor sent her for a chest x-ray because she wasn’t improving. The chest x-ray showed some viral inflammation but no pneumonia, which we were thankful for. Our doctor also prescribed prednisolone. (Yea! bonus steroid week!) Just kidding. Steroid week is one we all dread around here. It makes Serenity feel awful and she turns into quite the little monster some days. Then she cries and says, “I hate it when I’m mean to people.”

Several siblings have had the same cough but they are mostly over it.

Serenity seemed to improve for a few days, but now it’s back. We’ve made a third trip to the pediatrician and she has an ear infection now, too, which boggles my mind given the multiple antibiotics she’s been on this month. She is now on a different antibiotic, and has a second nebulizer medication (Budesonide). It breaks my heart to see her propped up in bed with the mask - which she dislikes - over her face, trying to breathe in as much of the medicine as she possibly can. She is tired of being sick, and I wish more than anything that I could do something to help her. The other day she spiked a fever of 102.6 which made us nervous, but Tylenol brought it down and she’s been ok since.

We had a clinic visit about 10 days ago and I mentioned her cough to the nurse practitioner. He thinks she will feel better soon when she is off treatment and not on so many medications. I hope so! She’s had leg pain that comes and goes for months now, and I thought again about pressing for a bone scan to rule out AVN. Since she has only a few weeks left of treatment I decided to hold off and see what happens when she goes off the steroids and chemo.

Next month! I can hardly believe it. In the beginning I couldn’t imagine life this far down the road. Serenity goes back to the clinic next month for her final lumbar puncture and her final dose of intravenous and intrathecal (in her spine) chemotherapy. Then 5 days of steroids and then we finish out the month of July with her daily oral & weekly chemo and she’s done!

I have to say, I am beyond excited for her and also pretty nervous. With ALL, the ideal is for the doctors to achieve remission within a period of days. So when people ask if Serenity is in remission, they’re shocked to hear that she was in remission by day 14. Research has shown that if treatment isn’t maintained for several years, the child is more likely to relapse. We were told that she would be on treatment for approximately 2 1/2 years. (It’s 3 1/2 years for boys.) It is actually calculated to be 2 years from the time she started Interim Maintenance (one of the phases of treatment). So the end of July will be 2 years for us.

I asked the nurse practitioner about Off Treatment follow up. They would still like us to bring her in monthly for a CBC and exam, but it will be in another part of the clinic and “quick in and out”, he said. He asked if I wanted her port to come out at her appointment next month, or wait an extra month “just to see”. I told him I’d like to leave it in for another year! Her port has been such a blessing. Blood draws are quick and painless. He said they won’t leave it in for a year, one month it is. A CBC can be done with just a drop of blood so they will just do a finger poke. I still have reservations getting her port out, because if they needed a line for anything in the future she would have to have an IV, like anyone else. I do understand why they want to remove her port-a-cath. With a central line, there is increased risk for infection, and when she gets a fever, we run her to the hospital for IV antibiotics. With the port gone, we won’t need to do that anymore.

In my heart I believe we have kicked this thing and I am excited for my little girl to get her healthy body back and be a normal kid. At the same time, the idea of *not* giving her chemo every day to keep the beast at bay terrifies me. For the past 2 years she has had chemo nearly every day and multiple doctors have hovered over her, with us chronicling and reporting every symptom, no matter how mild. Now we’re going back into the world of Everybody Else where a fever is just a fever and a cough is just a cough. Except we’re not Everybody Else and maybe never will be. I walk around with an anvil labeled Cancer hanging over my head, wondering when it will drop. Sometimes I forget it’s there, but not often. Maybe in time that will change.

Phil took Serenity to her clinic visit this month. Here she is sitting in the room waiting for the nurse to come draw her blood for labs.

In the Rapid Treatment Unit awaiting her lumbar puncture procedure.

Waking up from her procedure. She is very sleepy and HUNGRY after fasting all morning.

Back in the clinic for her intravenous chemo. These quarterly visits are especially hard on her because she gets chemo in her spine and also IV. We are lucky that her side effects are minimal. After this visit she was running around and even jumped on the neighbors tramp! She’s supposed to spend extra time lying down - I think to keep the chemo in her spinal fluid longer - so we were a little aghast to realize she had been on the tramp.

Serenity is doing well. I haven’t updated here regularly and I’m feeling guilty about that. There was some drama with our new insurance and getting authorization for her to have Home Health do blood draws at home, and then some more drama with getting them to pay for one of her prescriptions. Both instances involved many phone calls and more than a few tears but everything worked out in the end.

We go back to the clinic next week for her monthly visit. Right now she is on 75% chemo and feeling pretty good. She was very tired yesterday and fell asleep in my arms at lunch, which is unusual for her. Anything unusual makes me worry but today she is running around and acting fine, so hopefully she’s not teetering on the brink of any illness.

Serenity has had a cold for several days now, and a cough that sounds painful. She’s run a low grade fever for several nights, but it’s always gone by morning. And today she started complaining about her ears.

Mommy, why do I talk funny? Am I talking in Spanish?

Last night she was up most of the night crying and generally feeling awful. So this morning I took her to the pediatrician. I was starting to worry she had bronchitis, because a cousin who is also sick has both bronchitis and infection in her eye and ear. Good news! It’s just an ear infection and her lungs are clear. The doctor gave us a prescription for Amoxicillin and said it’s not usual for her fever to only surface at bedtime.

Serenity had her monthly appointment at the clinic on the 20th. I was anxious to learn what her ANC was because of her previous dentist appointment. Fortunately, it was 2.8 which is pretty high for a cancer kid. So high, in fact, that they decided to bump her chemo up to 75%. She was on 100% chemo for months originally, so it makes me a teensy bit nervous when they have her on less than a full dose. (Her ANC should ideally fall within a certain range, so the chemo is adjusted based on her ANC. Too little and she’s not getting enough to fight the cancer; too much and her counts will crash. It’s a delicate balance.)

The clinic was super busy when we were there. Our provider told me that there were 6 new cases that day! It’s always a weird feeling to see newly diagnosed families in the waiting room. I hear the things they say and a part of me wants to interrupt and tell them what they’re really in for for the next 2-3 years. Instead I keep my mouth shut and mind my own business.

Serenity had her lumbar puncture after our clinic visit. For the first time the medicine the anesthesiologist gave her didn’t put her to sleep immediately, which unnerved me. After a few seconds he drew it back through her line and pushed it again. This time it made her sleepy, but she was still sitting up and looking at me, and she started to cry. Usually she falls asleep instantly. He gave her another small dose and she continued to cry and call out for me as I laid her down on the bed. He put the oxygen mask on her face and she was writhing around on the bed and crying softly. It was the saddest thing. At that point they asked me to leave so they could start her procedure, so I did, but it was hard. I knew she was too out of it to know what was happening, and would be asleep in a few more seconds, but it was hard to leave her there calling for me. She did great through the procedure and woke up quickly afterward, still calling for me. We had an incident when Indigo broke her jaw a few months ago and kept waking up through the anesthesia, despite the fact that they kept increasing her dose. I was afraid that Serenity would wake up during her lumbar puncture (spinal tap) and maybe she did. These kids go through so much and just take it all in stride. It makes me proud of her, and in awe, and breaks my heart all at the same time.

After her lumbar puncture, where they put chemo into her spinal column and draw out some fluid to test for blasts, Serenity was soon back to normal although a little subdued. She’d been fasting all day for her procedure and it was funny to hear her talk about all the different things she suddenly wanted to eat.

We went back up to the clinic for her vincristine in her port, and then home. I was supposed to start her back on dexamethasone, which helps the vincristine cross the blood barrier, and I forgot! I didn’t remember for 2 days, and I am just kicking myself for that. They even reminded me at the clinic. Every once in a while we make a mistake on her medications - and while I know that it happens, and it’s even factored into the 2-3 year treatment protocol - there is always a small part of me that knows that if she were to relapse, I would always hold myself responsible.

This week we’ve been dealing with a VERY emotional and clingy Steroid Girl. Serenity gets hysterical very quickly on steroids and stops speaking in words we can understand. She throws herself on the floor and screams unintelligibly while Phil and I rally around trying to guess what she is upset about. This week has been harder than most. I’m sure it’s not helped by the fact that she doesn’t feel well. The kids have all come down with a horrible cough and cold as well. Phil and I are teetering on the brink of becoming sick and I just don’t know what we’ll do if it happens. I’m so exhausted and worn out just trying to take care of everybody that I can’t get sick myself.

Serenity had a dentist appointment today. She was scheduled for a cleaning next month but yesterday the receptionist called and said they could fit her in today.

It wasn’t until we were there at the appointment that I remembered that her oncologist wants her to have prophylactic antibiotics a few hours before her appointment. I’ve forgotten in the past and they’ve always had us just hurry up and take some as soon as I remembered.

So I called the oncology department, a little embarrassed that I’d forgotten. The person I spoke with chastised me because she was supposed to get a CBC ahead of time in order to make sure her ANC is above 500. I’ve never done this before! I really think I would have remembered. I mentioned that we’d never done it before and I don’t think he believed me. He said they always want them to have a CBC ahead of time. He did agree to call in a prescription, but I wonder now what her ANC is and if everything will be alright.

We have an appointment next week for her monthly vincristine, and she’ll have another lumbar puncture with methotrexate injected into her spine.

Serenity’s ANC was good again at our clinic visit last week, so she is back on her chemo. The break has been nice, but I’m relieved that she’s got some immunity back to protect her this season.

No news is good news. I expected Serenity to get exposed to something over the holiday weekend, but she has been feeling great. A few days ago she had horrible dark circles under her eyes; it usually happens when she is about to get sick. But she’s looking better now and acting like her adorable sweet self.

Today was the last day we have health insurance. We’ve applied for Medicaid, so hopefully that will cover us until Phil’s able to find work. It’s funny to me that in some ways we’ll now have better insurance - no co-pays for prescriptions and hospital stays. Medicaid won’t cover home health visits so we’ll have to make more frequent trips up to Primary Children’s.

I think she will have another CBC sometime this week to see if her ANC has risen at all.

Today was another clinic visit. I expected the place to be packed but it was almost empty. That’s always nice. We were assigned to Room 3, which Serenity thought was very cool. 3 is her favorite number (because she is 3 years old).

Serenity got to talk to the Child Life Specialist for a few minutes. Serenity has asked to see her during the past few visits, but when things are crazy busy she’s not always easy to track down. This time she helped Serenity to pick out a toy. Phil & I laughed at the Care Bears toy that she played with. It was like a miniature doll house with all these different parts. Serenity picked up the big dinosaur-age computer and asked, “What’s this?” I don’t think she believed us that it was a computer because it was as big as the Care Bears and the chairs they sat on.

The appointment went quickly. Serenity has been especially bashful lately, so she kept her face hidden from the doctor and nurses most of the time. We managed to snap a few quick photos though!

Here she is getting her port cleaned, so that it can be accessed.

And getting her Vincristine (chemo).

She got to pick out a hat from the hat tree in the clinic.

I stopped by the pharmacy to pick up some Prevacid after her visit. It’s been a few months since we bought any, and I don’t know if our insurance was the same. The co-pay was $41! I was in shock. We’ve never had to pay more than $10 for anything. I only had $10 with me, so I left the medicine there. If she needs it we can have it transferred closer to home and pick it up in a few days.

Phil was laid off several weeks ago and we have no money coming in right now. He’s started applying for out of state jobs since so far nothing has come through locally. It will be a blessing if something comes through, but moving is complicated for the obvious reasons, but also because of Serenity’s treatment. If he is able to get a good paying job outside the state, it will mean him moving and most like I will stay here with the kids until she finishes treatment next year. We are praying that it doesn’t come to that.

Serenity seems to be feeling good, so we got a shock when the clinic called with her lab results. Her ANC is down to ZERO! I don’t know if it’s ever been that low. We always keep her out of public places when her ANC is low (less than 1000) but we are both very nervous that she’ll be exposed to something over the holidays. The good news - if you can call it that - is that she doesn’t get her oral chemo when her ANC is low. We’ve been holding her oral chemo for most of Oct and Nov now, so I do hope that her marrow responds soon and we see those numbers come back up.

Happy Thanksgiving!

Serenity cracks me up. She asks me almost daily, “Is my ANC low or high?” She illustrates low and high by putting her hand close to the floor or by her head. She knows that low ANC means she won’t be going to church or preschool, so in her mind low ANC is a good thing. (She doesn’t like to be anywhere without either Phil or I.)

Her ANC is at 500 today, so she is still taking a break from oral chemo. We will have another blood draw on Monday to see where she is at.

She despises the taste of the Flagyl she is taking for C diff. So Phil devised a method that includes a quick shot of medicine flavored with orange syrup, followed by a drink of milk and a Skittle. So far she’s been cooperative and the other kids love the fact that they get a Skittle as well.

We are back home, and happier for it.

Serenity’s labwork came back positive for rhinovirus (a cold) and so we were discharged Friday afternoon. She hasn’t had a fever since Thursday night and appears to be feeling much better. She will have another CBC tomorrow and hopefully her ANC will have come up since it was still 400 at last check.

I got a call today that she tested positive for C diff. No wonder she has been complaining about tummy pain! She’s had bright green diarrhea and smelly gas for the past couple of days. She has a prescription now to take Flagyll for 14 days, so hopefully she will be feeling better quickly.

I am still feeling yucky so I think I must have the flu. I don’t think I’ve had it before and since I don’t feel like lying down to die I had assumed it was something else. But this is dragging on for more than a week now, and I have little energy and have been really weepy, so perhaps it’s a mild case. If only I knew for sure, so I could get out of getting the flu vaccine.

We came in to the hospital this morning because Serenity woke with a 102 fever and chills, achiness, and cough. It looks like the flu, so that combined with an ANC of 400 means they are keeping her overnight. If she looks good tomorrow & flu results come back positive then we may go home tomorrow. If flu results are neg or it turns out to be a bacterial infection we may be here longer. Her bloodwork seems to indicate it could be the beginnings of a bacterial infection (high % of bands) but her doctor thinks it is probably not.

They are giving her tamiflu so hopefully she will feel better quickly.

This past weekend was a fun one. Our family camped at Bear Lake for the Halloween weekend and the kids really had a lot of fun. We took a few photos so I’ll try and make time to post them in the next couple of days.

Serenity also had another clinic visit. Her counts are good so she is back to 100% chemo. And she only has 9 months left of treatment! I am amazed that we are so close to the finish line. In some ways it’s a little bit scary to me, the thought of stopping chemo at that point.