Another Three Months

I took a half a day off work today to take my little princess up to the hospital for her three month (really 4 month) oncology checkup. The first sign that it was a good day - I forgot which exit to take to get to the hospital! That is a good sign that we're moving further and further away from our nightmare! I do have one request for all of the nim-whits driving around the parking garage trying to find a parking spot - just keep on flipping moving - there are open spaces on the bottom floor!!! It drives me nuts when people block up 10 cars waiting for a family of 4 (or 10) to load into their mini van. Those of us who have 'done some time' already know that it makes more sense to drive down to the bottom and park right by the elevator. It's quicker AND you don't have to walk as far schlepping your nap-deprived child.

On to the important stuff. The doctor said she looked fantastic - no concerns. Everyone from nurses to child life commented on how much she's grown. They said she's not a baby anymore ... try telling her mom that! She did kick the you know what out of nurse holding her down during her blood draw, but I'm pretty sure that baby in her tummy was kicking right back. They didn't get quite enough blood so we actually had to stick her twice - she was PISSED. We had to get an extra tube for the sleep doctor - whom we will see later this month.

We had a long wait for the blood draw, and as always Chelsea used her time wisely - greeting kids from teenagers to toddlers. Some were stuck in isolation, others were trying to hide behind a curtain - but in true Chelsea fashion she found them, popped in and said, "HIIII!" While I worry that she's bothering people sometimes, I know she always puts a smile on their face - and for a kid on chemo I think sometimes that's just what they need.

I called to get her results on the way home: ANC 2,200, HGB 15.8, Platelets 387, WBC 4.8. So that's it, she's perfect. But we already knew that right?!

De-nied

I am so backed up on blogging. Wow. One day you'll check up and there will be multiple entries. That means I couldn't sleep.

For now, I can't avoid sharing our story from last night. Anytime I get ticked off I feel the strong urge to share it with the world. So here you go. I have to warn you I must backtrack a bit though ...

Friday I took Chelsea to her babysitters house so I could go to my staff meeting. An hour after dropping her off the sitter called and said she was crying and following her around the house. She said when her husband tried to go to work, Chelsea started sobbing, reaching for him and saying DADDY. He came back in and held her for a bit before leaving. The sitter thought it might help for Chelsea to talk to me so she put her on the phone.

Chelsea? It's mommy.

Mommeeee??? (full blown bawling).

Don't cry baby. Mommy's coming.

Yeah, I'm a sucker. I tried to just help warm her up so I could leave, but she wasn't having it. It was not a good day for any of my backups either, so Chelsea got to attend her first staff meeting. I'm pretty sure none of the other teachers there minded a bit! She tends to be pretty charming.

Fast forward to Sunday. She wakes up coughing. She did pretty well during the day, then started coughing again at night. It was barky, a classic croup. We've done this multiple times before (usually with Logan), so no panicking yet.

Monday evening Grandma comes over, immediately notices Chelsea's warm (bad mama!) Seriously I felt bad I didn't notice. I didn't think she felt too warm, so I went ahead and ran our errands before checking her temp. By 7pm when we got home she felt warmer and was acting sick. She wasn't playful, wasn't talking, and was just downright grumpy. Sure enough, she was up to 101.7.

At this point you know what I'm thinking right? Swine flu. Seriously I panic a little too much. I called the school nurse (can you believe they publish the staff phone numbers in the school directory. Crazy. I still can't get over that.) Anyways I called and bugged the school nurse and she assured me they haven't had any H1N1, or even any fevers at the school lately. Whew. We're back to classic croup. My next call was to our ped.'s office to see if they wanted me to see have her checked for the flu, or seen for any reason. She did say that it might be worthwhile to take her to a prompt care so we didn't end up in the ER where it was super germy later on that night. I thought that was definitely not a bad idea.

I quickly called every prompt care in town until I found ONE that took Chelsea's insurance. You see because she has a disability she has a medical card, and not everyone accepts her medical card. Health care. I won't even start. So I head across town, literally. Once I get to the other side of town, I'm taken on a 5 mile detour. Did I mention I'm fighting the clock? Making every effort to arrive before they close at 8pm. In the end I was successful, I arrived about 5 minutes before close.

They asked what we were there for and I told them. Because I have a big mouth, I did say that I didn't think she was extremely sick, but I wanted someone to peek at her so I didn't end up in the ER. I mentioned that she would catch more bugs there than here, and since she has AML in remission I wasn't comfortable with that.

Honk. Beep. Buzz. (Imagine RED lights flashing everywhere).

That was the wrong thing to say.

We can't see her here.

Ummm, yes you can. Her leukemia is in remission, she hasn't had treatment for almost a year.

Well still, we can't see her. Did you call her oncologist?

Her what? They have real cancer patients they are taking care of. They don't really want to know every time my daughter has a fever.

Well I know our doctors won't see her.

For crying out loud, let me talk to them.

The doctor is on the other side of the room and the nurse whispers our situation to him. He asks me who told us to come here. I told him her pediatrician did. Then he says, "did they tell you what our operating hours are?"

Hmmm, so is this a case of ....

You don't want to see my daughter because she had leukemia A YEAR AGO ...

or you're sick and tired of seeing patients and you just want to go home?

I'm pretty sure it was the latter. I made one of those instant mommy decisions and decided these didn't seem like people I really wanted laying hands on my kid anyways.

Forget it. We're going home.

Well, m'am. We've noted that our medical advice was for you to go to the ER.

My kid has a fever and a cough. I'm not going to the ER.

Call me bitter, whatever. I thought that was completely ridiculous. For crying out loud, how long after chemo do they expect us to harass our oncologist? I'm pretty sure they will get a kick out of it.

And by the way, we went to the ped. today. She's got a sore throat, a cough and a fever still. No flu. No strep. Just a virus.

Just In

The director of our Leukemia & Lymphoma Society called today. She asked if Chelsea could be their honored hero for the 2009 Light the Night Walk! I told her I'd have to talk it over with Ryan. Just kidding, of course I said yes! Thank goodness Ryan is easy going about our families adventures!



They haven't set the date yet, but you'll be the first to know! If you didn't walk with us last year, I hope you can join us for our 2009 walk!

Please Consider

I wanted to share with you the letter we are sending to our neighbors in our neighborhood drive. It was emotional writing this as we approach the one year date of Chelsea's diagnosis.

Dear Neighbor,
I wanted to take this opportunity to share with you a very personal story. You may be surprised to learn the trials we have been through this past year, but I hope our story touches your heart. Blood cancer happens to people of all ages, races and cultures. You never know when it will happen to someone you know.

One year ago, we received a phone call from our daughter’s pediatrician that would change our lives forever. With his four words, “we need to talk,” I knew something was terribly wrong. I had taken her to his office the day before, as she hadn’t been acting much like herself. She had just learned to walk and was stumbling more than normal, she had been running a low-grade fever, and was sleeping a lot. Along with her falls came bruises on her legs, back and face.

I called my husband to have him meet me at the doctor’s office, “Chelsea has leukemia,” I told him. He told me not to jump to conclusions, but I knew in the pit of my stomach, it was blood cancer. I knew nothing more.

The doctor confirmed her blood tests showed telltale signs of leukemia; extremely low platelets, and a high percentage of blast (cancer) cells. I knew nothing about where we would go from there. I had no idea what leukemia was, what causes it, or if we could get rid of it. The doctor told us to go to Children’s Mercy, so we did.

The next few days was a blur of new faces, doctors, nurses, social workers, surgeons, and a jumble of new medical terminology we had to quickly learn. I furiously took notes, asked questions, and watched helplessly as they poked, examined and tested my baby girl. An early bone marrow aspiration, in which they sedated her and removed red marrow from her hipbone just above her buttocks, showed she had the more aggressive form of leukemia, Acute Myeloid Leukemia (AML).

We were blessed that her chances of survival were high, but because of the aggressive nature of her cancer the treatment would prove traitorous. One of the leading causes of death for AML patients like Chelsea is due to side effects from the chemo. We knew the treatments would be difficult, but it was particularly hard to hear that even when the chemotherapy was finished, we would be far from done. Many children with AML die from the toxicity of the chemotherapy drugs. Her heart in particular was one of the major organs in danger of being seriously damaged, and a heart transplant was something we wanted to avoid in the future.

Because of advanced research, Chelsea had the opportunity to participate in a study regimen of chemotherapy that would reduce the toxicity and in turn, perhaps, increase her chances for survival. While we were still struggling to understand her leukemia, we were faced with making this important decision; do we participate in a study regimen or do we follow the standard protocol for children like Chelsea? We didn’t have much time to think, we had to decide, and we had to begin treatment immediately.

Without looking back, we decided to go forward with the study protocol. Determined to do what was best for Chelsea, we felt good about participating and helping other children who would later be diagnosed with AML. Hours after signing the consent forms, she began the first of six grueling rounds of chemotherapy. Each one knocked out her bad cancer cells as well as her good infection fighting cells. Basically each time she received a round of chemotherapy she would be left defenseless against minor cuts or scratches, the flu, and even the common cold. Each round was different, but most ran nonstop into her veins from 4 to 8 days straight.

While each treatment plagued her with the typical side effects: nausea, lethargy, mouth sores and hair loss, her tender hearted spunky personality prevailed. She remained happy throughout, and battled the cancer like a true fighter. Over her 9 months of active treatment, we spent 157 days in the hospital. Looking back, it was a small price to pay for something we often take for granted, life.

Chelsea is now in remission and returns to the hospital for monthly blood work and a thorough exam. She will continue to be monitored closely into adulthood, but we are hopeful that the side effects she faces in the future will be minor and easily corrected because of her participation in the research study protocol. Please consider donating to the Leukemia and Lymphoma Society in honor of our sweet Chelsea. Cancer doesn’t discriminate. Chelsea could be your grandchild, your daughter, your sister, or your neighbor. Thank you for helping to save lives. I know the families who will face similar cancers in the future also thank you.

You can donate via our team page, team Dream Big. This is also the page for local family and friends to join our team, we would love to have you walk with us, all of us. I can't wait to see Chelsea walking as a survivor!

New Friends, Old Friends

Last night we were eating dinner on the patio at a small Mexican restaurant near our home. As we were finishing our meal, I noticed a family who was seated next to us. They had an adorable little boy, about Chelsea's age who looked awfully familiar. I already knew, but I asked anyways ... "did you shave his head?" You see we're members of the same club, so I knew it would be okay for me to ask. Looking like they were surprised at my comment, the shook their heads no. I replied in understanding, "oh ... chemo?" They affirmed my suspicions and when I asked what kind of cancer they told me he had leukemia, ALL. At this point I'm sure they thought I was crazy, so I immediately explained that we've been there and I pointed to Chelsea pointing out that she just finished treatment for AML. It's funny because you could see everything clicking now, they're faces showed some relief to know that I wasn't some extremely rude, crazy woman. As we left I gave them our blog and email to check in on Chelsea and crew, and the mother reciprocated. We will be adding little Hunter to our prayers as he finishes his intensification and goes into maintenance for the next couple of years.

I would also like to ask for prayers for another friend, who we met while in the hospital. Baby McKensie was diagnosed with AML 6 months after Chelsea, so I spent a lot of time with her and her mom during those long hospital stays. Parents of kids with AML tend to stick together because we're all stuck in the hospital for such long periods of time. McKensie's family just found out this week that she has relapsed. She was preparing for a bone marrow transplant later this month, but now they must give her a different protocol of chemo in hopes the leukemia will go into remission again. They cannot do the transplant until the cancer is in remission. I know this family would appreciate all your prayers. Their faith remains strong throughout these trying times and I know that McKensie is in the best hands possible!

Here's a picture on one of our last days in the hospital of Chelsea and her little buddy McKensie. It's one of my favorite pictures.