Christmas At Home

Whew, we made it through Christmas without any fevers! Alex has a nasty sounding cough, but no fever - let's keep it that way!

Tired Boy

Alex is *so* excited about Christmas - he has been jumping, running, full of energy all day. He just ran out of steam this evening, and fell asleep at the dinner table at 6:30. I hope that it is just regular exhaustion, and not the beginnings of a battle against infection with his body. His counts are still low enough, that a fever would most likely end us back in the hospital for a few days.

Santa, all I want for Christmas is to spend it with my family AT HOME. Please?

Make-A-Wish Trip - Day 5

Friday, October 30, 2009

I woke up in the hospital, and started posting stuff online, to let everyone know we had derailed on Alex's trip. This is the first post: Make-A-Wish Trip & A Bump In The Road

A little while later, I talked to my mom, and she told me that Make-A-Wish and Give Kids the World were trying to extend our stay. Words cannot express how grateful I was that Alex would get to finish his Wish trip.

I notice I am using the word grateful a lot in these blog postings. I looked at the Thesaurus to see if I could mix it up a bit, but no other word really worked. Give Kids the World heard that Alex was in the hospital, and told *us* that we would be staying longer. It was not something we asked for - I couldn't imagine even asking, after all that they had done for us. So yes, grateful is the best word.

A few hours later, I got the call from Make-A-Wish that our flights were rescheduled, and our rental car extended. The tears were warm on my cheek, as I tried to thank these amazing organizations for their support of our family.

Here are a couple posts that I did that day:

Give Kids The World & Make-A-Wish

A Pile of Candy & Giggles

It's OK To Cry

Our nurses were dressed as Thing 1 and Thing 2 from Dr. Seuss' "The Cat In the Hat", complete with green/blue wigs. I think Alex was a little confused - they don't make nurses like that in Portland!

Next: Day 6 - A Six Hour Pass

Make-A-Wish Trip - Day 4

Thursday October 29, 2009

We woke up on Thursday very excited to see Mickey Mouse and friends. They visit GKTW on Thursday mornings, and we wanted to make sure we saw them!

All of us headed down to the Gingerbread house for breakfast, and then wandered over to Julie's Safari Theater to meet the Big Mouse himself.

As we got closer, both Alex and Tessa started getting really excited! Pluto, Goofy, and Belle were outside the theater. Tessa was ecstatic, and Alex was thrilled to meet them all!

Then, we went inside to meet the Main Mouse, and his sweet-heart. Mickey and Minnie were on stage, and after a few minutes wait, we got to go up and say "Hi". Honestly, I just about lost it. Tears were welling up in my eyes, as I looked at Alex give Mickey a great big hug. This was the essence of the Wish.

After our "meet and greet", we went back to the Villa to get ready for the day. Of course, we had to pass the Carousel on the way so, of course Tessa and Alex had to take a spin or two, or three.

The weather was predicted to be in the 90's again, as we gathered our stuff to go to Universal Studios. It was HOT, really HOT. Alex was grumpy, and I think all of us were getting tired, and we hadn't even made it to the park yet.

We went on a few attractions at Universal. We were able watch Shrek 4D (fun, but gross at times!). Everyone went on the Jimmy Neutron simulator (I held Tessa on my lap on the non-moving seats). Watching the Grandparents, Alex and Eric on that ride is a highlight of the trip for me!

Universal Studios is definitely geared towards older kids, and there wasn't much that Tessa could go on. The three Grandparents watched Tessa while trying to find shade, as Alex, Eric and I went on the Simpson's ride. It's a simulator, and I ended up missing the last 5 minutes, since I had to squeeze my eyes shut tight to keep from throwing up all over Alex.

After the ride (which Alex and Eric loved), we went to get some lunch. Alex was sitting in a stroller, and started to really act out. He wasn't behaving at all, and hardly touched any of his lunch. I felt his forehead, and then touched Tessa's. They felt the same - hot. I felt Eric's too, and it was hot. I just chalked up the behavior to the excitement, and heat of the day.

After we ate, we wandered a bit around the park, but Alex just wasn't interested in doing anything. We managed to get him on one roller coaster, but after that, he was done. So, we decided to head back towards the Magic Kingdom. This was the night we had tickets for "Mickey's Not So Scary Halloween Party". We were excited to have the kids dress up, and trick-or-treat in the park. Alex fell asleep in the stroller on the way out of Universal Studios, and slept all the way to Magic Kingdom. I was grateful that he got some sleep, and hopeful that it would improve his mood.

We got Tessa-Lynn dressed into her ADORABLE Minnie Mouse costume in the car. She kept saying "pretty, pretty!". Alex had no intention of getting on his costume until we were in the park.

Once we got in the park, Alex was still acting tired. We decided to just push him in the stroller for a while, and let him rest. We tried to go on a few rides, but all in all, Alex's energy level was so low, that we decided to head into an air conditioned restaurant to cool off. The problem was that while all of the rest of us cooled off, Alex did not. He stayed flush, as the rest of us returned to normal. I started getting a sinking feeling in my stomach as I realized he was now hot to the touch, and the rest of us were not. We all headed to the First Aid Station to get his temperature taken. I kept telling myself that Alex's counts were probably great. He had been off of *all* medication for a week now, so even if we went in for some IV fluids and antibiotics, he wouldn't need to get admitted - right?

Unfortunately, the thermometer read 102, so we went into the Disney Wish Lounge right next to the First Aid Station, and made a call to Doerenbecher. It was 6pm in Florida, so only 3pm in Portland. The advise nurse told me what I didn't want to hear. Alex needed to be seen at an emergency room.

We had our guide book from Give Kids the World, and it listed nearby hospitals. We chose one that had an ER, and that "fed" into Arnold Palmer Children's Hospital in Orlando, in case Alex would need to be admitted. We figured that this was a little detour, and that all would be OK after some fluids and maybe some antibiotics. I hoped it was just exhaustion and heat that caused this fever spike.

As we were leaving the Magic Kingdom before we got to go to any Halloween activities, I stopped by the customer service desk to see if we could get a refund on the "Not So Scary Halloween Party", since it hadn't even stated yet. Disney came through for this Wish family. They gave us tickets to the Oct 31st party, which had been sold out for months. And, if we couldn't make that night, we could get a refund then.

We crossed our fingers as we left that Alex would be able to come back, and finish his Wish.

We dropped the Grandparents and Tessa-Lynn off at GKTW, and headed for the Emergency Department. We used a big band-aid to put over Alex's Port to hold the numbing cream on, and made our way to the hospital. When we got there, we explained what was going on, and that our son was going through cancer treatment, and had a fever, and could be neutropenic (low white blood cell count). They said "OK", and stuck us in the regular waiting room with all the sick people. We really are spoiled here in Portland. When Alex goes in the ED, they whisk him away to a clean room *immediately* to reduce the risk of infection in his delicate state. Here in Orlando, at this hospital, Alex was just a number. After what felt like an eternity, we were called in, and put in a room. After another eternity, a nurse came in and wanted to access Alex's Port. By this time, the numbing cream had been on Alex's skin for a few hours. Either he was numb to his toes, or it had worn off. I hoped it was the former.

I asked for some adhesive remover to help take off the band-aid. The nurse said that they didn't have any. So, I started gently peeling the band-aid off of Alex. It was slow going, and he was obviously in pain (so much for being numb all over). I decided that it would be better if I just pulled it off fast. As I did it, I remembered that Alex's skin is so sensitive in that spot; it had been taped up repeatedly over the past 11 months, but it was too late. I heard him cry out, and then I saw blood. I had actually ripped off some of his skin with the band-aid. I just cried with him, and told him how sorry I was. He was such a trooper about it. I felt like crap. All three of us were exhausted by this point. The nurse used a "huge" needle on Alex (thankfully, the numbing cream still worked). It took WELL over an hour for them to get Alex's counts back. By this time, it was after 9pm at night, and we still didn't know what was going on. I called my mom, and told her we would call when we knew something. I doubt any of the Grandparents could sleep at that point.

Finally, a doctor came in to save us from another hour of horribly acted Disney TV. Unfortunately, his news wasn't good. Alex's counts were only ninety-eight, yep 98. They would have to transport Alex in an ambulance to Arnold Palmer Children's Hospital. So, we waited, and waited, until the ambulance arrived. Then, Eric and I watched our son get strapped down on a gurney, and rolled out to the ambulance. I rode with Alex, while Eric followed behind.

I NEVER EVER wanted to ride in an ambulance with my son. He was exhausted, and fell asleep on the way. It was now about midnight, and exhaustion was making the tears easier to breach my eyes.

When we arrived, we lost Eric in the parking lot as Alex and I headed up to Pediatric Oncology. Once we got there, I told the night nurse that I was *really* unhappy with the way Alex's Port was dressed in the ED. She shook her head and said "tsk, tsk, tsk", as she gently cleaned and redressed Alex's Port. I was grateful for her tenderness. Eric showed up a few minutes later, and it was decided that I would sleep there that night, and Eric would head back to GKTW, to return in the morning.

I hardly remember putting sheets on the roll-away bed, or even putting my head on the pillow. I DO remember my heart shattering in pieces thinking about how unfair all of this was. Alex wouldn't get to finish his Wish - he was cheated out of another opportunity to just be a kid. I silently cried myself to sleep, listening to the quiet breathing of my sweet, sweet boy...

NEXT: Day 5, a day at the hospital.

Another Counts Check

Today, we went back up to the clinic to get Alex's counts checked again. They stayed level at 600 - which is lower than they want, but not low enough to change his dosage. So, we stay the course for 3 more weeks, until his next Chemo appointment in January.

We need to just be really careful that he doesn't get sick and a fever, or he has a very good chance of getting admitted.

Only 4 more days until Christmas - we can do it!

Think Healthy Thoughts!

Make-A-Wish Trip - Day 3

Wednesday, October 28, 2009

We woke up to another beautiful, and HOT day at Give Kids The World. Today, Grandma Diana and Grandpa Bob were staying at GKTW with Tessa-Lynn while Eric, Alex, Grandma Carol and I went to Disney Hollywood Studios.

After another yummy breakfast at the Gingerbread House, we walked over to "Keaton's Corral", where gentle horses were giving rides to all the children. Alex didn't want to go on the horses, but Tessa was just about jumping out of her shoes trying to get to the "Zebra"!

The volunteers were so sweet, and gave Tessa-Lynn and Alex cowboy hats. After watching the horses and donkeys for a few minutes, we headed back to the Villa so we could get ready for our next adventure. Alex, Carol, Eric and I loaded in the mini-van, while Grandma Diana and Grandpa Bob pushed Tessa in the stroller over to the Carousel.

First stop at Hollywood Studios was "Star Tours" - Alex LOVED the simulator ride, and got his orange Star Wars Blaster. After acquiring his Rebel Alliance weapon, we went over to the Jedi academy training center. Alex was a bit overwhelmed, and decided just to watch the other kids battle Darth Vader. He was fascinated!

Next, we went to the Indiana Jones show. Alex has never seen the movies, so it was fun to see his eyes get big as the giant bolder came barreling down on Indie. As a Wish child, we got front row seats. Alex had his blaster ready, and was ready to assist Indiana Jones fight off the bad guys if he was needed. The fire and explosions were quite impressive from the front row, and the dry heat rolling off the set was actually a welcome change from the humid, HUMID, Florida weather.

We ate lunch, and went on the studio back lot tour. On our way there, we ran into Lightning McQueen, and Mater from the movie Cars. The line for a picture was long, but again, as a Wish family, we went to the front of the line. I saw one father scowl at us, and it was all I could do not to walk up to him afterwards, and explain that childhood cancer was the cost of admission, and that the price was too high...

We were getting exhausted at this point. Alex fell asleep on the back lot tour, and after it was over, we found a corner in an air conditioned restaurant, and Alex and I napped, while Grandma Carol and Eric just rested.

We then hit "The Tower of Terror" ride - which is a free-fall ride. Alex LOVED it - he thought it was great! Here is a video of the ride for those who want to see what it its... Click here. He was smiling ear to ear the whole ride, and having the time of his life!

After a final run with Star Tours, we headed back to GKTW. Alex had a date with some dinosaurs at Mark's Dino Put-Put after dinner. Universal Studios built the 9 hole course for GKTW, and it is one of the best miniature golf courses I have ever seen. At each hole, the dinosaurs move, spray water, growl, and fascinate the kids (and grown ups too!).

After a great game, we headed to the ice cream parlor for some great dessert. We all enjoyed swapping stories about our day.

We headed back to the Villa, and eventually fell asleep. Alex was in good spirits, and we had no idea his body was starting to battle an infection, that would land him in the hospital in just 24 hours.

Next - Day 4 Universal Studios, and the Hospital

Chemo Exhaustion

Alex's counts are low, and the effects of his heavy doses of Chemo, including steroids, are showing.

He fell asleep at the dinner table tonight at 5:30 - he is still asleep. We have to wake him up in a few minutes to give him his evening Chemo before putting him to bed for the night.

He had a great day at school - and no sign of a fever - but this round of Chemo each month wipes him out.

Since yesterday morning, he has had:

9 steroid pills

5 1/2 Methotrexate pills

IV Vincristine

2 1/2 Mercaptapurine pills

2 Previcid pills

1 dose Zofran

I hope he has the energy for school, and to fight off any possible illnesses. He's been coughing a bit today...

Chemo Appointment

Yesterday, Alex had his regular monthly Chemo appointment. He did great, as always *smile*.

His counts were another story. His ANC was only 600 - gulp. That means that if he gets a fever, we have a very good chance of landing in the hospital.

The doctor told me it was my call whether to even bring Alex to school. What seems like an easy choice, "don't bring him" - gets more complicated when you realize that this is the last week of school before a two week break, and that he was already out of school for almost 4 weeks last month.

So, Eric and I decided that Alex will go to school this week, but if we see any sign of illness from Alex or anyone else, we are pulling him out.

We would hate to spend Christmas in the hospital. So, we are using hand-sanitizer every few minutes - if Alex escapes this cancer without becoming OCD about hand washing, I'll be amazed. (only half-joking...)

The doctors are nervous enough about his counts that they want to re-check on Monday to see what direction they are headed. If they are still under 750, they will halt his oral chemo for a week, and then re-assess the dosage.

It's not easy to figure out dosages for kids who are constantly growing and changing. Alex has shot up over 2 1/2 inches in the last 3 months - I'm sure his normal body chemistry is not easy to navigate with the added chaos of Chemo.

Counts Check

Alex had a quick appointment at the clinic yesterday to check his counts, since he so recently returned to full strength chemo.

The nurse accessed his Port, and drew the blood. She then flushed and locked the Port with Heparin, and de-accessed. Alex was his usual brave boy, and he told the nurse what the next step was through the whole process.

Good news. His ANC was 1,700 - slightly higher than they want (750-1,500), but good enough for the next two weeks.

Luck would have it, that the clinic received 100 - yep a whopping 100 - H1N1 shots last Friday. Unfortunately, Alex cannot get the booster short for one more week. Then, he can't get it because he is within a week of steroids, so it will be AT LEAST 3 more weeks before he can get his booster shot - and in all likelihood, the clinic will be out of them by then. Ugh - this H1N1 flu season has been a fiasco for those who really need it. Oh, but that is another post, and a different rant :-)

In the clinic we met a woman who's 6 1/2 year old was getting her very last back poke. The girl was diagnosed with a similar cancer when she was 4 - and was within weeks of saying good-bye to cancer treatment forever. I cannot put into words the joy I saw on this mom's face as she said "take care" to us, and walked her daughter back to the procedure room. I can't wait to walk in there for the last time!

We only have 16 1/2 months of treatment left. That is only 67 more Saturdays before we say "take this Port and shove it, cancer!"

I just can't wait!

Alex is back at school - and loving every minute of it - I'm so glad he is getting to be a "regular" kid so far during these holidays.

We are thankful for so many people and organizations this year who have worked so hard to save my son, and enrich his life since cancer reared it's ugly head. Thank you, thank you, thank you!