Heading Home

We are on our way home - the fever is reducing - so, nothing to do but wait to see if it goes up or down...

Oh Snap!

Since cussing is not allowed in our house, I will say "Oh Snap!" We are headed back up to Doerenbecher - Alex's fever is 100.7 this morning. He looked at me and cried saying "I just want to play, Mommy!" My heart is breaking for him.

I bought us an hour, and he's outside playing with Gamma Carol and Gampa Pat while I get things ready to go.

I hope it's a short visit...

Update #2

Alex's fever is dropping - down to 99.7 about 30 minutes ago. I expect we'll go home around 5pm or so, and wait to see if the fever comes back tomorrow.

I really hope that this was all just a side effect of the Chemo. He has slept all day, and just woke up. He is hungry, and sitting next to me in a chair.

Tessa-Lynn is hanging out with her Gamma Carol and Gampa Pat today. They came for a visit this week, and unfortunately have not seen much of Alex the past 24 hours :(

Hopefully, this little "fever episode" will pass, and we'll be able to enjoy the rest of the week fever free!

The nurse just walked in to de-access his PORT - a good sign that they don't think he'll be back tomorrow!

Update

The doctor just came in and said that they are going to give another dose of antibiotics, and also hook him up to an IV for hydration. Alex has only been awake for about 2 hours this whole day. He is sleeping, and shivering under two blankets in a room where the thermostat reads 76 degrees.

The doctors want to see a marked improvement in his fever before they will send him home. The suspicion now is that this fever is a side effect of the Cyterabine - what they call the Cyterabine Syndrome - fever, aches, diarrhea - a lot like the flu.

Right now, Alex is getting hooked up to the IV and just received a dose of Tylenol to combat the fever recorded at 104.0 a few minutes ago.

The goal is to send us home tonight. For right now, my sweet boy is sleeping, and fighting off this blasted fever. I think I will modify our bedtime chant: Go away fever, Go away!

Isolation

I'm sitting in an isolation room with a sleeping Alex while the doctors determine what they want to do about this persistent fever. Over the last two and a half days it has gone as high as 104.0 - Right now, it is at 103.4. He is chilled, and flush, and has no energy. It sucks to see our son so worn out, and I can't do anything for him.

They are concerned that it might be a flu, although he isn't exhibiting all of the flu-like symptoms. They even mentioned Swine Flu - but, it may just be a nasty virus or just a side effect of the Cyterabine.

The doctors are perplexed that his ANC counts keep rising (5,500 today) because after the two weeks of Chemo he has just done, his counts should be plummeting, not rising. His Platelet count and Red Blood Cell count are cooperating with the Chemo, but his White Blood Count keeps rising instead of falling. I don't know what that means, and I refuse to speculate at this point.

So, we wait...I don't even know if we are coming home tonight...

4th Trip to the ED This Month

After Alex's nap today, we headed back up to the ED, since Alex's fever returned with a vengeance. He received more antibiotics and Tylenol, and the doctor checked his ANC again (4,400!), and then sent us home. I think it was in record time at 2.5 hours total.

The suspicion is that the fever is a side effect of the Cyterabine. Since he took his last dose today, I hope that it will work through his body, and the fever will disappear.

We get to visit the Clinic tomorrow if the fever returns. Let's all cheer on Alex's body to return to a normal temperature, and save us the trip up the hill.

Good night all!

Amusement Parks and Fevers

Today was quite a roller coaster (excuse the pun...). The Optimists Club had a fundraiser for the Candlelighters Childhood Cancer Foundation today at Oaks Amusement Park. We enjoyed free ride bracelets and free lunch.

This morning, Alex took a while to wake up, and when he did, he said that he didn't feel very good. We gave him some Zofran and Oxycotin to ease his pain. We headed for breakfast, and by the time our food arrived, he was back to his old self. After a good meal, we were off to Oaks for a day of fun!

We rode some rides, ate a little lunch, and then at 2pm, Alex started to complain of a headache. We felt his forehead, which was hot to the touch, and headed back to the picnic area. After giving him some cold water, and some food, we took his temperature. As I watched the numbers climb above 100.4, I knew we were going to head up to Doerenbecher. After talking to the On-Call Oncologist who confirmed our new travel plans, Eric and Tessa-Lynn dropped Alex and me off at the ED where we were whisked into a room immediately. The hours passed, as we waited for blood draws and chest X-Rays to be reviewed, and antibiotics to be administered. Alex napped for 4 hours, and at 8:30pm, Eric came back, and took us home.

With the Tylenol and Motrin, Alex's fever came down, and we were able to get him to sleep by 10:30pm. We'll see what tomorrow brings!

May the Force Be With You...

Alex is a huge, I mean, HUGE Star Wars fan. Today when we were in the clinic for his Chemo appointment, he looked at me when the doctor came in, and said "May the force be with you". I replied "May the force be with you too"!

We had a great Chemo appointment today. After last weeks marathon (9+ hours) appointment, getting in and out in 3 hours was a breeze!

Last week, Alex had to be hydrated for 2 hours before and 4 hours after his Cytoxan Chemo. This is so the Chemo doesn't burn a hole in his bladder. He also had an lumbar puncture where the Chemo called Methotrexate is injected into his spine in order to travel up to his brain, trying to make sure that brain cancer is not in his future. We came home from that appointment with his PORT accessed so that we could administer more Chemo at home for 3 days. A new drug, Thioguanine was added to the mix this last week too. He takes that for 14 days. It is hard on the liver, so they only give it to him once during his whole two-year Chemo cycle.

For those of you interested in exactly what some of his Chemo drugs do, click the following links:

Thioguanine

Cytoxan

Cytarabine

Methotrexate

Vincristine

Daunorubicin

Doxorubicin

Mercaptopurine

Prednisone

Dexamethasone

PEG Asparaginase

This week, Alex had another LP of Methotrexate, and Cytarabine. So, his PORT is accessed until Sunday night. He also continues to take the Thioguanine for another week.

In the Star Wars movies, the Force is a power that binds all things - I like to think that Alex's body plus the Chemo is acting like the Force, destroying his cancer, and making him whole.

May the Force be with you Alex!

As we say every night before bed: Go Away Cancer - Go Away!

Hair in the Bathtub

The other night, I was giving the kids a bath, and when it was time to wash Alex's hair he said:

"Mom...I don't have to wash my hair, because...I don't have any!"

I laughed and said - "Well, then your head is dirty - we'll just wash that!"

After bath time was over, and the kids were dry and in their PJ's, I walked back into the bathroom, and noticed the hair floating in the bathtub water as it circled the drain. It hit me so hard that Alex has cancer, and that the reason his hair is falling out is because of the poison that he keeps ingesting, and that we keep injecting into his body.

I really thought: "Once it hits me that Alex has cancer, I'll deal with it, and get used to the idea". Guess what? You don't get hit just "once". You get pummeled with the realization that your child was days away from death over, and Over, and OVER again. It hits you at the most inopportune times - like draining the bathtub.

This week has been a nice break from the pills and potions of cancer treatment. Alex's sweet, funny and willful personality has returned full force. Tomorrow we have the start of round two of Delayed Intensification. He will be getting new drugs he has never gotten before, along with some of the more familiar poisons.

He is less than 40 days away from "Maintenance" which is the final phase of treatment. Maintenance is medications of one kind or another every day for 18 months, with the cycle repeating every 85 days. He'll only need to visit the clinic once a month during Maintenance - I can't wait to get to that point. It's a huge milestone in the life of a cancer patient. The next big milestone after that will be when his PORT is removed - sometime around January of 2011.

Delayed Round 2 of Delayed Intensification

After getting 5 hours of sleep, I woke up and got Tessa-Lynn and Alex ready for the day. Our friend Taegen offered to watch Tessa for the day, since this clinic appointment was scheduled as an all day affair.

We dropped Tessa off at Taegen's house, and headed back up the hill - only 7 hours after leaving there last night.

The nurse accessed his PORT for the third time in 3 days, and drew the blood for the CBC (complete blood count). She checked his vitals, and he was fever-free. HOWEVER, his ANC came back at only 400!?!? - Half of what it was only 10 hours earlier - HUH??????????

So, they aborted the Chemo for today, and will try again next week, and graciously allowed us to come home, since he did not have a fever (whew!)

The upside is that Alex gets a week off of Chemo. The downside, is that his cancer gets a week off of Chemo too...

Back to the ED...Again

Last night, at about 8:30, Alex spiked a fever again. I called the on-call Oncologist, and we were instructed to head back to the ED (Emergency Department). This time, Eric stayed at home with Tessa-Lynn, and I drove Alex up the hill. After checking counts (ANC=810), and giving an antibiotic, Alex and I were released at 2am. Honestly, I can't remember getting off the freeway, and driving into our neighborhood - I was just too tired...

ANC 625

That means Alex gets to come home from the ED...no hospital stay for him!

Good night all!

Blasted Fever

Eric is on the way to Doerenbecher with Alex - he spiked a fever again this evening. If his counts are under 500, they will be checking in - otherwise it will be antibiotics and fluids and home.

I am staying home with Tessa-Lynn - I'll post once I know more...

I HATE YOU CANCER!

An Open Letter to Cancer

I hate you, cancer. I hate you with every ounce of my being. I hate what you have done to our son, I hate that you are trying to claim his life as yours.

You have stolen some of his innocence. You have made him hurt. You have taken his energy, and his sweet personality.

I'm here to tell you, that you WON"T win this battle. Alex is strong, and even when he is tired, and hurting, he is fighting you. And he isn't fighting alone. His family is strong, and will do anything they can for this sweet boy.

You may have taken some of his childhood. But you will NOT take his life!

Go to Hell cancer - just GO TO HELL...

The Hardest Battle Yet

We knew this phase of Alex's treatment was going to be rough - but I didn't fully understand how rough it would be on our sweet boy.

On May 28th, Alex went in for his next round of Chemo consisting of Vincristine and Doxorubicine. His counts were down from 8,100 to just 1,400 - IN ONE WEEK. These drugs are powerful - and brutal. Then, add the steroids to the mix, and we had a *very* hungry boy, who didn't want to eat since it made him nauseous. What a horrible feeling.

He has wanted a lot of Mommy Time and Daddy Time during this phase. I'm glad we can provide comfort with just a hug, and snuggle and a kiss. It's all we have right now.

On Wednesday, June 3rd, Alex and Eric headed back up to the clinic for just a blood count, so we had a baseline before we headed to Salt Lake City for my sister's wedding. His counts were down to 600 - less than half of what they were just 6 days earlier. But, high enough to go. He didn't have Chemo that week - just the steroids.

Since being here in Salt Lake, Alex's energy has just plummeted. He went from tired, but excited about the trip, to not even wanting to leave the hotel room, and asking for naps. It is breaking our hearts.

Alex is also shedding his hair - the Chemo is doing it's job - and this is only temporary...right? Right? RIGHT? Please, just let this be temporary...