A 6 Hour Pass

The doctors are giving Alex a 6 hour pass from the hospital to go trick-or-treating at the Magic Kingdom tonight.

We are so excited that he gets to experience this part of his wish! His doctor here was really excited for him too.

We are bummed that Alex has to come back to the hospital to be observed overnight, but we expect him to be released tomorrow, to finish his wish at Give Kids The World, as long as he doesn't spike another fever.

The Grandparents took Tessa-Lynn to Sea World today, and they say she is really enjoying it. We'll go again with Alex on Monday or Tuesday - I can't wait to see their faces!

Alex's platelets were low, but started rising today, so no transfusion necessary (whew). We haven't heard what his ANC is yet - but we anticipate that it is rising...(we hope!).

It's OK To Cry

Yesterday was not as bad as I thought it would be - for staying in a room the size of a one car garage at the hospital.

Alex giggled with Eric, carved virtual pumpkins on the computer, and watched WAY to much TV. At dinner time, Eric headed back to Give Kids The World to hang out with Tessa and the Grandparents, while I stayed here with Alex.

Everything was great - Alex ate a good bit of his dinner, and had some early Halloween candy for dessert.

Then, it was time for bed.

Alex tried so hard not to cry. His eyes were wet, and his face was red, and he could barely speak. He looked at me with such soulful eyes and said "We aren't going home?" I said "Not tonight honey - but hopefully tomorrow - we'll see what the doctors tell us in the morning".

He rolled away from me, and said "I just want to go home", and started crying. I felt so helpless. This is all so unfair - I'm so angry that my sweet boy is having to deal with this. He tries so hard to be brave.

A little earlier in the evening, Alex heard another little kid crying down the hall. He told me "Someone is crying. It's OK to cry. Sometimes, you just have to cry, and it's OK".

I reminded myself of that, as I turned off the lights, and listened to the sound of his tears, while trying to stop the flow of mine.

A Pile Of Candy & Giggles

I went downstairs here at the hospital to get something to eat. The whole lobby is full of trick-or-treater's, and hospital workers dressed up in costumes. It broke my heart that Alex couldn't participate, due to his low counts (he is quarantined in his room).

A few minutes after I returned to the room, a ChildLife specialist came in with a huge bag of candy and toys for Alex. A little bit later, Candlelighters brought MORE toys, candy, and cookies on a stick.

Alex is currently sitting in a pile of candy and toys on his bed, and playing with a "sticky hand" with Eric (it keeps getting stuck to the ceiling - hmmmm...I wonder how that happened?). Alex and Eric are giggling away, having some fun and normalcy.

Alex is so resilient - I learn so much from him every day!

Give Kids The World & Make-A-Wish

Give Kids The World and Make-A-Wish are extending our stay until November 4th. Hopefully Alex will get out of the hospital on Sunday morning, and we can continue with his Wish for a few more days.

Words cannot express how much we appreciate what these amazing organizations are doing for us!

Make-A-Wish Trip & A Bump In The Road

We have been having a wonderful time here in Florida - even with the humidity and heat (90 degree weather - and high humidity in October - really?!?!?!).

I'll write more about our adventures when we return.

In the meantime, I wanted to let everyone know that Alex spiked a fever, and was admitted to the Arnold Palmer Hospital for Children last night (well, early this morning...). We'll be staying for at least 48 hours - but hope to have him well enough to get a 6 hour pass to go Trick-Or-Treating tomorrow night at Disney World.

Tessa-Lynn is in good hands with 3 of her Grandparents, enjoying all the wonderful things to do at Give Kids The World.

In fact, Give Kids The World is working with Make-A-Wish to extend our stay for a few days, so that Alex can experience his whole wish. These groups are truly amazing - and we will be forever grateful for their support of our family through this ordeal.

Alex has a small spot on his lungs, which the doctors are concerned might be the beginnings of pneumonia, so they are treating him with heavy antibiotics. They are also starting him on Tamiflu as a precaution.

He was admitted because his ANC was only 98 last night. This morning it is up to 119, which is trending in the right direction at least. His fever spiked at 103.4 last night, but has been normal since about 2am.

I'll update more as I find out new information.

Thank you for all your support of our sweet boy - we really feel it right now.

Make-A-Wish Thank You Party

On Sunday, Make-A-Wish, and our amazing "Wish Fairies", threw a party for our family and friends who have supported us through this first year of cancer treatment.

First, let me say that our Wish Fairies are amazing! We had the party at the new Tigard Fire Station, and Firemen and Policemen were there along with our friends and family.

Alex was a little shy at first, but did truly enjoy riding in the fire-truck around the neighborhood, and getting to spray the hose!

We are so excited for our trip - we just need to make sure we stay healthy between now and then!

Thank you again to everyone who has helped us make it through this last year.

Flu Mist Update

I received a call from Doerenbecher today, updating their policy on the Flu Mist.

Due to the shortage of flu shots, and the prevalence of Flu Mist, both Doerenbecher and Emanuel Hospitals have been forced to alter their guidelines for their pediatric cancer patients. Alex can now go to school even when Flu Mist has been used.

I have been given additional instructions to keep Alex out of the classroom if his blood counts drop to a certain level.

It seems that there was a lot of confusion and frustration by some of the parents as to what was being asked of them. I never wanted their children to go unvaccinated. I just needed to know if they did the Mist so I could take the appropriate precautions for my child.

Having a child with cancer is the most terrifying ordeal I have ever encountered. We have a long road to recovery – 18 more months of daily Chemotherapy.

Thank you, and I express my deep appreciation for helping keep Alex safe. With all of the chaos that cancer has brought to our life, the simple act of going to school has been a huge chunk of normalcy back to his life.

No School...

One of Alex's preschool friends got the H1N1 Flu Mist last Thursday, which means that Alex shouldn't attend school this week.

We got a call at the last minute on Monday, saying that child was not attending that day, so I rushed Alex to school, to enjoy some time with his friends.

But that was the last time this week. We had some playtime with some of his friends on Tuesday, and today, we visited with more friends this afternoon. Tomorrow, we'll again try to distract Alex from missing school.

This cold and flu season is just getting started, and I'm already exhausted...

A Sea of Balloons

Friday night, our family and friends all donned their Warriors 4 Alex T-shirts and headed for downtown Portland. The Leukemia & Lymphoma Societies Light the Night Walk events were scheduled to start at 6pm, with the walk at 7:30.

Alex carried a white balloon as a survivor, while all his supporters carried red balloons. Eric carried a gold balloon in memory of Dawson, a young boy who lost his battle with Leukemia recently.

The balloons were illuminated with flashing lights, and the view of all of them walking along the waterfront and crossing the bridges in Portland was a sight to behold.

Alex had AMAZING energy that night. Playing, and running like it was the middle of the day, and not past his bedtime.

Half of us walked the short route, and half walked the long route. Somehow, we ended up as the *very* last team to finish the walk. But we finished it.

What a great night. We Are Warriors 4 Alex - we will win this battle!

Alex's Make-A-Wish TV Appearance!

Make-A-Wish

Today, Alex will be interviewed by our local TV station at 4:45 pm (KATU - channel 2), to help promote Make-A-Wish Miles for Smiles campaign.

The Make-A-Wish Foundation is asking for donated airline miles. Seventy-five percent of all wishes start with "I wish to go to...". These airline miles help make our children's wishes come true.

We are flying to Disney World for Alex's Make-A-Wish later this month. We know that this was made possible by the generous donations of people just like you.

If you cannot watch our interview live, please consider clicking HERE to donate any unused airline miles to Make-A-Wish.

Alex talks about his upcoming trip so often, I am so excited for him, and so grateful for Make-A-Wish for making it happen!

What A Difference A Day Makes

Alex woke up this morning in a great mood - we had a great day hanging around the house, with a quick trip to Home Depot.

What a difference a day makes. He didn't need any Zofran, had no GI tract issues, and ate quite a bit.

I hope the next few weeks are quiet, and relatively uneventful!

"I Don't Have Enough Blood..."

Today, we ventured to OMSI - Alex was in a much better mood, and with the last dose of steroids behind us for another month, I was in a better mood too.

After a few hours of running around, we grabbed some lunch, and headed for home. While both kids fell asleep on the way back, Alex woke back up as we were carrying him back into the house. He rested on the couch while Tessa-Lynn napped.

Once his sister was awake, Alex, Tessa, and Eric went outside to play basketball while I cooked dinner. While Eric went to get the balls out of the garage, Alex just sat down on the little wall. Eric walked over and asked him what was the matter. Alex said "I don't have enough blood to throw the ball".

A little while later, Eric was able to convince Alex to play a little baseball in the court.

He ate very little for dinner, requesting more Zofran, and went to bed without a fight.

I don't have anything else to say right now...

A Crazy Day In Alex's House

Tomorrow is the last dose of steroids for the month. I can't wait.

Today was so hard. In the morning, Alex was just all over the place. He was happy, sad, mad, angry, hurt, playful, sincere, selfish, joyful, loving, distraught, delighted - all in the span of a few hours. I did my best to juggle his emotional turmoil, while his younger sister fed off of the emotions, and was a wreck herself!

Alex wanted to go to OMSI. In his state, there was no way I was going to take him and Tessa-Lynn there by myself. He lost it - crying, hysterics, pouting, you get the picture.

After a bunch of deep breaths, and after giving myself a 5 minute timeout away from the kids (Eric worked from home today, and watched them for me). I was able to hold back my tears, and proceed with my plan of distraction.

I told Alex that we would go to the store to get gingerbread cookie mix, and then come home, and make Halloween decorations and make the cookies.

It worked for a while - Alex and I happily cut up paper and taped googly eyes and pipe-cleaner, donning the house in festive "boo" fashion, while Tessa took her nap.

After cooking the gingerbread men, Eric took Alex to the store. When they returned with dinner, Alex stated he needed Zofran. We obliged, and noticed Alex took a total of two bites of his dinner. A few minutes later, he was sitting on Eric's lap, and fell asleep. We gave him a 1/2 hour nap, and when he woke up he started running to the bathroom. He was in and out of there at least 10 times before bed. He didn't resist his medicine, and went to bed easily. A few minutes later, Eric heard Alex calling for me. Eric walked in and rocked with him for a few minutes. Alex was complaining that his tummy hurt (we think it's his lower intestines/bowels). We are keeping our ears open for him, and hope that he can get a good night sleep.

Since this cycle will repeat the week we go to Disney World for our Make-A-Wish, we have a call into his Oncologist to see if they have any stronger nausea/digestion medication we can give him so he is comfortable during his Wish. I'll let you know what I find out as soon as I know.

School

Alex woke up from his impromptu nap, and was ready for school. I spent the first 30 minutes of class cleaning the toys in the classroom with the help of a good friend. The reason? One of the kids in another class got the flu mist, which spreads live vaccine everywhere the child goes. Normal healthy individuals can fight off the weakened virus, but in immuno-compromised children, the virus can take hold, and could ultimately take a life.

Since Alex cannot get the flu shot for another 2 1/2 weeks, he is especially vulnerable.

But I digress....

Alex did great for about half the class - then, his tummy started hurting, and the tears started flowing. The rest of the class time was spent with Alex on my lap, holding my hand, or clinging to my leg.

The wave of nausea has subsided for now, and Alex actually ate some dinner (along with another dose of Zofran). He is outside with Eric and Tessa-Lynn working on a giant string spider web around our oak tree...

Sleeping

For those of you who don't know our son personally, let me explain that he is a ball of energy with legs, arms, and a head. He loves to play, and run around.

Right now, and for the past hour, he has been asleep on the couch. He is so tired. These monthly chemo rounds just drain him.

Today, his school will be making traps to catch those sneaky gingerbread men that escaped from the school kitchen on Monday. Eric and Alex even devised a trap last night, that Alex was going to show teacher Susie at school today. He was so excited! Now, he is sleeping on the couch, and I'm not sure he'll have the energy to go to school...

I hate you, cancer!

Appetite

Alex essentially had nothing to eat yesterday. Everything was sitting in his stomach all day, and then decided to take the road less traveled to leave his body.

Alex felt better after the elimination of everything in his stomach, but went to bed with nothing but water in his tummy.

He woke up this morning very hungry - he's already eaten a bowl of cheerios, some oatmeal, and is now working on some applesauce. Unfortunately, the chemo is still reeking havoc on his stomach, so while he is so hungry because of the steroids, the food is just not digesting as well as it should because of the chemo.

You may ask - "Why are you giving him so much to eat then"? My response - "Have you ever tried to stop a steroid induced eating machine"? All I can do, is give him his Previcid and Zofran, and hope that he can keep his food down...