Chemo Effects

Alex's breakfast and lunch decided to make a repeat performance this evening in our truck. This chemo is so hard on his poor body - and we still have 18 months to go...

Steroid Week - Ugh

We have already gone from happy, to rage, to giggly, to sad, to angry, to thoughtful, to happy, to rage...etc. You get the point. 1 day down 4 to go.

Clinic and Heartache

Alex had his monthly chemo appointment today. He was such a trooper when the nurse accessed his PORT. He is now comfortable enough with the process to ask for everything he needs. "I want the iodine instead of the stinky sponge" (used to clean his skin before accessing the PORT). "Please tape up the tubie" (to keep it from hanging down and getting in the way when he goes to the bathroom). I'm so proud of him! His blood counts were good - no transfusion necessary, and his ANC was at 1000 - right in the middle of where they want it (between 750 and 1500).

After Alex received his Vincristine, and was de-accessed, we headed down to the cafeteria to eat taco salad. Alex has decided that's what he wants every time we go to the hospital. I'm happy to oblige...

On the way home, Alex was talking about school, and how excited he was to go. The timing couldn't have been more perfect. School starts at 1pm, and we got off the freeway at 12:45, so we headed directly to school.

Alex ran down the hallway, so excited to play outside with his friends. I gave him a kiss good-bye, and watched him go outside. As I was talking to his teacher, the door opened, and my son - with eyes full of tears, came walking up to me "I need Zofran - my tummy hurts!". I just held him tight, and told him I would go home and get it. He decided to come with me, so we left the school long enough to come home, and get the medicine to calm his achy tummy. After packing Tessa-Lynn into the car (thanks mom for watching her while we went to clinic!), we headed back to school.

Alex asked me to stay for a few minutes, which made Tessa-Lynn so happy to play on the playground. Then, the tears really started. He said he wanted to just go home. But he didn't. He talked about school all weekend. He talked about school the whole time we were in the clinic. He just didn't feel good. With all the poison running through his body, it's amazing he can even get out of bed in the morning.

He cried as I sat there holding him in my lap. A few of his classmates came over to see what was wrong. To be honest, I was crying too. My boy was hurting, and there isn't anything I can do about it, except continue to give him the medicine that makes him feel so bad.

After about an hour of calming him down, I was able sneak away with Tessa-Lynn, and let him enjoy his class. When I came back, his teacher said that he got teary two other times that afternoon, but really enjoyed himself.

My heart just aches for everything Alex is going through. He has such a strong spirit, and he fights so hard against this cancer - it's exhausting for him, and for his family.

Eric's Words

I'm sure all of you have figured out that I'm the one who writes the blog entries. I have asked Eric if he wanted to contribute, and he always turns me down.

Today, I was copied on an email where Eric was asked to write a quick paragraph on Alex's life outside his battle with cancer.

This is what Eric wrote:

"Alexander is an incredibly playful four year old. On his first day of pre-school this year the first words in the morning were 'I get to go to school today!'. He couldn't wait to get out on the playground with his friends.

He does not watch tv shows, he plays tv shows. Right now he especially likes the Dukes of Hazzard. Every chase scene, jump and car wreck in reproduced, with extreme attention to detail, using hot wheel cars on our living room table.

He loves to do 'space turns' on anything he can. At the end of the movie Space Balls the flying Winnebago spaceship does a 180 casting off stars like rocks on a gravel road. Alex first started doing his 'space turns' on a tricycle. He would get it going as fast as he could and then turn hard swinging the back end around and stopping. Then he graduated to using his battery powered Jeep. One day we asked him to put it away in the garage forgetting that the garage doors were closed. He immediately started down our rather steep driveway going faster and faster heading directly for the closed doors. We were screaming at him 'Stop! Stop!'. He didn't listen, he knew what he was doing. At the very last second he pulled the wheel hard to the left swinging the back end around and stopping inches from the door. He looked back at us with a huge grin on his face and expression that said 'what, you didn't know I was going to do that'?"

Do you see why I love my husband so much? What a great description of Alex - our wonderful 4 year old boy!

Too Close To Home

Eric came home on Monday, and told me that a friend's nephew had died from complications of Leukemia over the weekend. The complications began with a simple cold that turned into pneumonia, and his poor little body couldn't fight it off. There were tears in Eric's eyes, and a quiver in his voice as he told me the sad news. While Eric had never met this sweet child, the idea that cancer had robbed this poor boy and his family of his future had hit too close to home.

Our hearts ache for this family, and we can't help but think how easily this could be our story. This battle against blood cancer is fierce, and we cannot let our guard down. We also must remember the casualties of this war, and hope that our battle is successful. Not just for Alex, but for all children with cancer.

Light the Night

As we approach the one year anniversary of Alex's diagnosis, we have so many people and organizations to thank for the support we have received throughout this ordeal. One of those organizations is the Leukemia & Lymphoma Society. They have been working tirelessly to help families like ours fight this vile disease. Twenty-five years ago, Lymphomas like Alex's were just about a death sentence - only 20% of children and their families were saved from the agony of a senseless and painful death. But now, with research funding provided by the Leukemia & Lymphoma Society, the tables have turned. Over 80% of children diagnosed today with T-Cell Lymphoma and many other blood cancers are cured. Not just for 5 years, but forever.

We are hopeful that our son will be part of that 80%. However, that still means 2 out of every 10 children die.

That is unacceptable.

Because you have given us so much support over the past year, and your concern for our family is so greatly appreciated, we now come to you to ask for your support of the organization that has helped our family, and so many others.

The Leukemia & Lymphoma Society (LLS) has a fundraiser every year called "Light the Night". Our family and friends have joined as a team with a goal of raising money for LLS to aid in the research to end the deaths from blood cancer. We would love to see Alex's generation as the last to loose children to blood cancers.

We know times are tough, and money is hard to part with. We wouldn't be asking if we didn't feel as strongly about this as we do. Every dollar helps.

Please click the link, and donate to LLS - we thank you with all our hearts.

http://pages.lightthenight.org/or/PortlndL09/sarawilkison

Nausea

Now that we are in the maintenance phase of Chemo, we know exactly what drugs he will be on for the next 18 months AND they are really messing with his whole GI tract. Eric and I just rushed downstairs 15 minutes ago because Alex was crying. When we walked into the room, the odor of vomit was so strong, Eric had to leave the room.

I guess we will just have to rely on good-old Zofran to combat the nausea for the next year and a half - there is no "getting use to this" - poor guy. My heart just breaks again and again with everything he is going through.

As I stroked his head while he was falling asleep in new PJ's and sheets, I told him "I'm so sorry honey". He said "It's alright mom, it's alright..." My strong boy is giving me comfort while he is going through so much.

I just love him so much...

Alex - a face of childhood cancer

Alex's picture is on page 52 of the new National Childhood Cancer Directory Resource, the Kid's Cancer Pages!

He is also now the "thank you" face for the American Red Cross here in the Pacific Northwest!

School

Alex is back at school!

This was the first week, and he was exhausted. The combination of afternoon school, no nap, and his daily chemo is quite tiring. Yesterday, he actually fell asleep in the car on the way home from school (which is just 1 mile from our house).

We are trying an earlier bed-time to combat the exhaustion. I hope it works...

Twilight Zone

This week is a steroid week. I actually fooled myself into thinking "this week isn't too bad..."

I was wrong.

Today, in the middle of Fred Meyer, my normally decently behaved 4 year old decided that "I NEVER GET ANY TOYS...never, Never, NEVER!" And just in case someone over in the produce section didn't hear him, he repeated this proclamation every 20 seconds or so for the duration of our time in the checkout line.

My daughter, who never wants to be left out of the fun, decided that she could squeal louder than Alex could lament, causing the ground beneath my feet to quake. I quickly looked around to make sure we were not going to be hit by glass shards if the windows shattered under the pitch of my daughter's delight.

I held strong, I held true. I did not give in and buy the source of all this drama - a $1.00 matchbox car.

The checkout guy wouldn't even make eye contact with me. I know I saw him roll his eyes as I returned my credit card to the well worn spot in my wallet.

Now that Alex looks like he has a real short buzz cut, instead of looking like a cancer patient, the reason for his behaviour is no longer obvious to the judgemental shoppers burning scornful holes in the back of my head.

I just wanted to scream: "My son is battling cancer - and he is acting out due to the medicine he takes to save his life. PLEASE give me and my kids a break! I AM a good mother, I DO discipline my children, I DO set limits - which is why we are all subjected to this symphony of wailing to begin with!"

Once I rolled the shopping cart out of the store, I felt this calm rush over me, and I looked at my two kids and they were calm.

Did I imagine the whole thing?

Alex was smiling, and Tessa-Lynn was quietly watching the cars through the parking lot. I would love to get my hands on the security tape for that moment. I want to see the demon that possessed my son, leave his body and return to the toy aisle, where it will wait for the next Mommy to stumble into the Twilight Zone.

Cautiously Relieved...

Good news! The mom with the child scheduled to get the FluMist decided to have him get the Flu Shot instead! So, as of this moment, I do not know of anyone at Alex's preschool who will be getting the FluMist *after* 9/7/09. That means Alex should be able to attend the first week of school!!!!

While I am relieved, I also know that this will be an ongoing issue for the flu season - and Alex could get taken out of class at anytime because of complications from some aspect of his cancer treatment.

Crushed

Alex will have to miss the first week of preschool, because a child in his class is getting the flu mist on September 11th - only 3 days before school, and unfortunately, Alex cannot be around *anyone* who has had the flu mist vaccine for 7 days.

As a mother of an immunosuppressed child, I am frustrated, and terrified about this coming flu season.

Even though Alex will be getting the H1N1 flu shot, it isn't ready yet, so until then, Alex is so vulnerable to the flu - both the standard strain, and the H1N1.

I cannot find ANY documentation to show me that the flu mist is better than a shot - in fact, it seems like just a gimmick to me. Since kids already get "shots" in order to be enrolled in school, what is one more?!?! How many doctors ASK the parents if their child will be around an immuno-suppressed person, before they administer the flu mist?

I am crushed that Alex will have to miss his first week of school - something he has been looking forward to for a month now - I'm so mad that yet again, cancer is interfering with our lives.