Yesterday Asher had his first pediatrician well-checkup since she sent him off to MRI because she suspected he had a brain tumor. That was 23 months ago. He has started up with his vaccinations now. He got five shots yesterday and he was not happy about it. His next set of shots will be in six months, October 23, 2008. He is about 50% for both his weight and height.

Asher is feeling well, is physically doing well, and is enjoying drawing and writing, which is pretty new to him. He is swimming almost everyday, about 2 hours a day. He does use arm floaties, but he is swimming well. Last week he decided he would float on his back and then swim the length of the pool on his back. Asher still likes to cook, but he has gotten into a comfort zone. He is becoming more picky and wanting to eat only what he knows or what he can make.

A year ago Asher came home after completing his last round of chemo and a stem cell transplant. Amazing what a year can do.


Kit, March Idea Notebook, by Gina of Digital Design Essentials; Font, Bell MT

We finally made it up to Flagstaff today. Asher got to see his first snow along the highway. He then got to feel his first snow with his fingers, as he learned to make a snowball and throw it at his dad's head. He made a snow angel; immediately after making it he stood up and stomped on it with his boots. It was a very pleasant, relaxing, wonderful 1 1/2 hours. We drove longer than we played (six hours to be exact), but it was oh so worth it! We were at elevation 7600 feet, in the Coconino National Forest. It was 53 degrees fahrenheit outside. The snow is melting and the Wing Mountain Winter Snow Play Area is already closed. Snow Bowl is still open, however, for skiing (and I think sledding). I fully intend to get Asher up to play in snow more next season.

Asher had a nap on the way home (his sister, Alexa, didn't need one (she just turned 4 today)).

When we were almost to Grandma Val's house, to pick up the babies, Aubree (22 months old) and Andrew (8 months old today), we saw six hot air balloons over some mountains during sunset. Just last night Asher and I were reading a book about modes of transportation and a hot air balloon was one of the modes. I'm seriously considering taking Asher up in a balloon; not sure when, but he and I have talked about it. He does tell me that we can't go up to space in a hot air balloon though, we would need a space shuttle for that.

No evidence of disease!

phew

When Annie called me, she said, "I got your email. No, I don't give MRI results over the phone, because it could get awkward. But Dr. looked at the results and gave me the okay to call you."

Yeah, I had emailed her last night because I feared they had no intention of calling me with the MRI results. When I was called in December, it was because they wanted to post-pone the clinic appointment a month, so they told me the MRI was clear and asked, "Could we reschedule you?" So, I guess I was right. I would have had to wait till 3/26 for the MRI results. Well, pooey. That would not have worked for me.

And, what would be awkward? Well, maybe awkward for her, but not for me. Nothing could be worse than the call I got on 5/26/06 around 5:30pm, when I was home alone with 2 daughters, one of which was 6 days old...."There's a mass growing in the back of Asher's brain...."

Really....I've been thinking....no call could be worse than that day, even if the MRI showed suspicious spots, or a big mass, I mean, I've been there, and even in the depth of my mind, I know that call could come some day. So, if the MRI showed something this week, I mean, what the heck would they have done? Just ignored it for 2 weeks till clinic....? I doubt it. I am sure they would have called and moved the appointment up, had another MRI done, or something....and in any of those cases, I would know something showed up on the scan. In any case, I will be talking to them on 3/26, at clinic, to find out what is the routine then since I was sure I would get a call.

OK....enough talk about the 'what-if.' The news is a sigh of relief. I never celebrate, or get excited.... I just calm down. My nerves relax. My mood becomes evened out. No more nausea, migraines, or diahrea. And, life carries on. I was this close to starting back up on the Zoloft this week, especially yesterday....my goodness....I was a mess, no matter what I did! I'm okay today, though, so I think it was just temporary anxiety....I was a bit nervous because Asher has been getting up in the middle of the night for a week, and, well, I didn't want to mention it because I didn't want anyone else to worry. But, I was worried. Now I know my son can get up in the middle of the night for no reason....it doesn't mean his cancer is back.

Thanks for the emails and prayers!!

The phone just rang. It was PCH. When the lady started talking, I thought, 'This isn't Annie. What's wrong?'

Ahhhh, it was just the gal wanting to know if Asher did okay after his anesthesia. I always forget they call....I used to ask them not to call me but the last two times I have forgotten.

So, now I feel like throwing up, because I got butterflies as soon as the phone rang, but it wasn't MRI results, so the butterflies never went away.

I think I'll clean house while I have two babies sleeping....maybe that will help waste the time away....

Scott woke me at 6:05am, today, to nurse Andrew....I couldn't go back to sleep while nursing (and normally I do). By 6:50, I made Andrew stop nursing so I could go to the bathroom, which is where I spent 20 minutes, and this was expected. No matter what I tell myself or what I think I'm doing (trying to ignore MRI day 'bad' thoughts), the overnight anxiety always reveals itself in bowel problems first thing in the morning. Always. I'm never spared that. At least it happens quite fast and I could still shower and get out the door on time.

I had to reinstall the carseat in the SUV before leaving this morning (Scott had taken it out to buy something big to put in the back of the SUV). It was pretty easy. After getting Asher buckled in and backing outta the driveway, Asher yelled at me to put my seat belt on until I put it on (which I always do once I'm outta the long driveway). Then I got to a stop sign and Asher said, "I love you more!" He thinks he is pretty silly saying that, skipping the other stuff.... I always had this thing with Asher, when he was 3, I would say, "I love you Asher." He would respond, "I love you too." I would quickly say, "I love you more!"

I was driving in the HOV lane (2+ people per vehicle). Asher told me, "You had better hurry and get there so they can put me to sleep or I'm going to fall asleep in the car!"

We left the house at 7:45am and made it to audiology by 8:34am.

The hearing test was 30 minutes late. It went fine. He enjoyed playing with a barrel of monkeys to indicate when he heard the noises. Seems to me, based on my memory, that the high frequency hearing loss is the same as it was last year and the right ear is awesome. So no worse; good news. He can hear for conversations just fine.

The MRI didn't start till 12:30pm (it was scheduled at 11am). The wait felt horribly long, longer than 1 1/2 hours. Mainly because it was really longer as the hearing test ended at 9:30am and then we sat around waiting for MRI. With RSV season, I couldn't go too many places with Asher, just admitting, and radiology waiting. So....it was boring. I wish I had brought more things for Asher to do. I will next time.

There was one point where I was growing so tired, I wanted to lay on the bed in pre-op and sleep! Asher was getting irritable, and kept saying, "I want them to call my name. I want my MRI now." I told him I was sorry he was hungry and promised we would do McD's drivethru after he woke up. Then there was a quiet moment in Asher and I looked at him and I found myself wondering.... I wondered, "How long will he live." I wondered, "What kind of job will he have as an adult." I wondered, "Is he going to live with no more cancer....or....will I lose him." They were quick thoughts, ugly, but quick.

I don't want to know the future. I do want to live in the moment. I want to remember, that ultimately it doesn't matter what tomorrow holds because it isn't here yet.

When Asher went into MRI, I gave him a high five and smooched his cheek and he smooched mine. I didn't even go into the MRI room with him.

I found a bathroom. Then I got a salad from the cafeteria, that and a Mountain Dew and a vending machine bag of pretzels. Waiting 1 1/2 hours for him to be finished went okay, too. I was quite tired and thought it would be nice if I could have napped, but I was actually surprised when they called me so soon. They did brain and spine MRI, an ECHO, and blood draw while he was under.

The post-op nurse was happy to see Asher. When I got back to her she was fussing about him, saying how great he looked and how she saw Scott at Khols during the holidays but didn't want to bother him, but really wanted to ask how Asher was. She said as soon as she saw the copy of my driver's license, THEN she knew it was thee Asher and she had them call me right back to see him, earlier than they would most parents. She was funny. She made me smile. She made me happy. She asked me how I feel when I come back to the hospital and I said Asher and I were both smiling and happy today. And we were. And, it is nurses like her that make us happy to come back. There are painful memories, but my son is healthy and that is because of PCH and the doctors and nurses inside of it. I actually was hoping to run into some nurses and doctors that I knew, but I didn't see anyone today. I didn't even recognize the anesthesiologist. Even he said he didn't think he took care of Asher before, and he said, "I am not sure how that can be with all that he has been through."

Anyway, Asher took a long time to wake up. Removing the IV in his ankle didn't even wake him up. I then started making him sit up, talking to him, touching his head and face, and then he said he wanted to go home. He slept so long that his popsicle was dripping into the cup when Asher picked it up to lick it.

I carried Asher out to the SUV in the parking garage. I had to put him down three different times to take a rest; he is so heavy! He was so sleepy that there was no way he could walk. Usually he can walk 1/2 way. Not today.

I did as promised, and when we were almost home I went through the drivethru and got him a plain cheeseburger and medium french fry ($2.15). He had already finished the popsicle (eating and drinking it). The french fries were hot and he told me, "You should go back and tell them to not make them so hot." I told him to eat the cheeseburger first. Luckily he has never had a nausea problem after anesthesia!

We got home around 3:45pm.

I haven't even looked at the MRI CD. I think I will just wait for the call tomorrow; hopefully they call with the MRI results then.


I have to admit, that I was surprised tonight. I only heard from 5 people prior to the MRI and this evening. Three in the guestbook, my mom (yesterday and today she called me), and then a neighbor (who happened to see me come home with Asher this afternoon and drove by and said hello and asked about Asher). As Scott and I were talking about it tonight, he said that people still ask about Asher at work. Many of them, when beginning a conversation, ask about Asher first, before discussing work. It means a lot to us, to know people still care about Asher's health, and care about us as we go through these routine checkups. I use that word (routine) carefully, but I did use it on paperwork today because when you take your baby in for a MRI, the sheet asks what the symptoms are and why are you there, basically. What is routine about bringing my 5-year-old son into the hospital to see if he has cancer in his brain? And, why was Asher and I so happy today? The answer to that is obvious....


A year....a year isn't much time....but when I think that one year is 20% of my son's life, then I think it is a lot of time....and the memories I have in my mind and heart of my son, fill up so much of my thoughts....he's had an awesome year, I think. One without treatment! Not one med. Not one therapy. One year where he was free, even of school. I have no regrets (as of now) that I did not send him to preschool this past year. And, I think he will do OK going straight into kindergarten. I worry about his writing and he's behind on reading, but I still have time to work with him, and I do a little each day. Anyway....I think we did what we wanted to do this past year and that was live in the moment and keep Asher healthy.


Instead of thinking so much about Asher's transplant, I find myself thinking about Michael. Michael had medulloblastoma at 6 and was healed but relapsed 5 years later. He had a stem cell rescue the same day as Asher, 3/13/07, but he passed away 5 days later! I find myself thinking about Michael tonight, not Asher....

This is what any parent wants, right? A normal kid.

Asher went to the dentist today. The gal that was going to clean his teeth wouldn't touch him until the doctor gave her the okay. Actually, same for Alexa. The medical history needs to be clean / cleared by the dentist before any work is done. So, the dentist asked lots of stuff about Asher, and most of it was about whether or not he was currently taking any medications and if his ANC was in the normal range.

He said Asher's teeth and gums looked wonderful. Although, his teeth are horribly crowded. He wasn't going to do an xray and didn't want to until he turned 6, but I requested it anyway. And, so he did it.

I looked at the images with the dentist then and his teeth looked great. No decay. No cavities. They are very crowded; even the adult ones are overlapped already and no way they will have enough room in his mouth without extractions / orthodontics. I basically already knew this. He did ask me if Asher had fallen face / mouth first into something, and I had to stop and think. I remember when he was maybe 14 months old he did stumble and hit face first into an airtivity playtable (I even have a video of it because I was video taping him at the time). The dentist said three of his front teeth don't have proper roots on them for their age. He said the trama made them think they were supposed to come out. He said to expect they may come out earlier than usual.

They reminded me that flossing needs to be done nightly as he will have a higher risk of cavities between the teeth / sides of the teeth with the over crowding problem.

He told me that chemo would cause the sides of the teeth to decay, but Asher has no signs of any problems. He also said the chemo could make his teeth fall out late, because of grow rate decreasing in kids that receive radiation and chemo (although Asher did not receive radiation).

He said, "So, we will treat Asher normally, like we treat other kids."

Woohoo.

Asher really wanted me to hold his hand the entire time he was having his teeth cleaned. I didn't realize he was nervous at all, until he saw the chair and was told to sit in it and he sat but he kept telling me (more like begging me) to hold his hand. I did hold his hand at first, and then told him he was doing great. Then he wanted me to go in with him during his xrays and I told him I couldn't so I just walked away. He cooperated fine with the gal, though, even when I wasn't there. Next time I won't even go back with him.

As I was looking up St. Patrick's Day events and Easter events, I was finding 2007 events and seeing fun photos and I actually said out loud, "Wow, why didn't we do this last year?"

Scott and I married at Fountain Lake Park in Fountain Hills, AZ, 2/29/00. As the ceremony (small private one) was nearing an end, the fountain went off, right about noon. For St. Patrick's Day they put dye in the fountain and it sprays green water. On our first non-anniversary year, we went back to the park to see the green fountain, but have not been back since.

Last year St. Patrick's day was on Saturday and they had a huge event for it. This year, March 17 is on Monday, and there doesn't seem to be any special events at that park. So, anyway, back to my comment, "Wow, why didn't we do this last year?" As quick as that came out my mouth, I let out a sigh and said, "Oh yeah, we were stuck in a hospital room."

How could I forget?

It was nice, even for a moment, to not remember what one year ago was about.

The past two weeks have been about lots of time outside. Watching everything blooming. The shamel ash trees and our two largest chinese evergreen elm trees have leaves already. We have a lot of flowers on some small trees and shrubs. Spring is one of my favorite times, as is autumn. As much as I do not like change, I like seeing change in the yard.

It is nice to be passing the one year hump. So nice. I have to admit, I do not feel better about more time post-chemo....I actually am a bit more nervous about it.


Asher had a friend over yesterday, a neighbor. Asher really likes this boy, who is 14 months older than him. He talks about him a lot and even though Asher isn't as mature as his friend, I like to see the interaction they have. Asher asked his friend to play dinosaurs, but his friend said, "No thanks, I'm not into them anymore." They were playing in the back, in the playground, and Asher's friend was up on the monkey bars and said, "I see you still have the scar on the back of your head." Asher didn't respond. It was a quick comment and then on to some playing. Made me think....I probably shouldn't tell Asher that people don't see it. I still plan to take him to see the plastic surgeon, but not till after clinic, which is 3/26 I believe. I wish Asher wouldn't have to talk about his cancer forever, but the scar is there, visible on his head and invisible in his heart....


We have a busier than normal week ahead, and our days are pretty 'lazy' around here (as far as the kids and I go).

Asher and Alexa go to the dentist tomorrow. It will be Asher's 2nd dentist visit. His first was prior to transplant in 2007. I wanted to take him to a dentist on our side of town (instead of the one he went to near PCH last year). So, the kids are 'new patients'. Their appointment was 4/1 originally, until the scheduler called me and said the owner of the dentistry wanted to see my children himself, because of my son's medical history. I found that interesting. She also said no xrays would be done unless the dentist felt they were necessary, but I want Asher to have xrays, as I have heard chemo can be pretty rough on teeth. So....we'll see what happens tomorrow. Should be interesting.

Wednesday is coming fast. We'll have a pretty full day. Sounds like clinic isn't for two weeks, though, so when I get the MRI news via a phone call, I'll post.


I picked up the kindergarten packet for Asher and will fill it out this week and as soon as I get the good news, post-MRI, we will celebrate by turning in the papers to get Asher registered for kindergarten. I'm also hoping to hear good news tomorrow, as we put Alexa's name into the preschool lottery and we're hoping she will be going to school this fall too!


As always, thanks for checking in on Asher.

Right before a late-lunch today, Asher asked me to take a photo of the back of his head. I was actually taking a photo of baby Andrew in his booster chair at the kitchen table at the time. So, of course I did as Asher asked. I took the picture, and then immediately he wanted to see it on the screen of the digital camera. I showed it to him. He made a quick comment that his hair is growing there. I said, yes, it grows over the bald area with the way it is cut.

Asher plays really silly games with Andrew....but they are kind of accidental.

Last night Asher was telling me a story about peanut butter and jelly sandwhiches. I'll be honest. I can't remember the story. It was a long day of yard work, and I was exhausted. Just sitting on the couch, with Andrew on my leg. Asher came up, a few inches from Andrew's face, with a smile and a lot of love in the eyes. Andrew beamed the same love right back to his big brother. Then Asher said, "Peanut butter and Jelly..." and Andrew giggled histerically. I laughed, then, as it took me by surprise.

A baby finds so much joy and silliness in the every day things.

Well, Asher played on this. He ran a few feet away, and ran back, facing Andrew, "Peanut butter and jelly!" Andrew giggled and drooled in extreme joy. I smiled huge. Asher ran a few feet away, and ran back, "Peanut butter and jelly!" Andrew laughed some more.

This goes on two more times, till the baby goobering simmers down and Asher loses the excitement of making his 7 month old baby brother laugh.

As Asher walks away I get this sadness over me. Then a joy. Then a sadness. Then the immediate urge to blog about this moment.

It is a similar feeling when I take photos of the children playing together.

I guess if you are to have memories, you must have the good with the bad.

There are two powerful bad memories that haunt my days (1) the time Asher went to PICU with a fever over 105 F, right prior I was sitting in his hospital bed, holding him, as he was shaking, and nurse Jaclyn said, "You OK Mom?" and (2) the time I was sitting in surgery waiting, alone, with the neurosurgeon and plastic surgeon telling me about Asher's first debridement and that the infection could very well be life threatening.

There are just moments in my week when those two memories invade my mind. I immediately attack them with the good, and awesome memories I have of Asher being a wonderful fighter....and of course, having Asher to play with helps, too!!

But, it is a challenge, and I think some of my anger is due to the bad memories haunting me.

I've thought a lot about my faith recently, even downloading some christian music on ITunes. Music helps when I feel down. But, the anger is still there.

I fill much of my day with a camera in my hand. Sometimes it feels like a chore, until I actually see the photos on the computer, after copying them over from the digital camera memory card. I feel like I have to record every moment. That's a huge responsibility I lay on myself, too. I feel like if I don't record everything, with photos, or videos, or comments / stories in the kids' blogs, that I will some day regret it. I would be completely happy if my eye glasses could act as a video camera, and when the day is done, I could attach them to my computer and burn the 13 hours on a DVD.

I can't help but smile, when I see my beautiful children. My eyes can't help but swell with tears, at the same time, especially when I see my Asher with his siblings.

There's always this what-if thing going on in my head.

What if some day I will be looking at these photos, and videos, with Alexa, Aubree, and Andrew, but not Asher?

Remember, a few blog entries ago, I posted that I was prepared for when / if Asher were to die? I lied, because that isn't completely correct. And I am sure if you were to ask any parent who has lost their child to cancer, they would tell you that nothing prepares you for that. I'll even bet if you ask them, they will tell you they never thought they were going to lose their child to childhood cancer.

Sigh.

The dreaded bad memories. Just the mere threat of losing my Asher....

"He lost a lot of blood. The surgery didn't go so well...."
"There's an 80% chance for 5-year survival...."
"This could be life threatening...."
"We're going to kill his bone marrow, and then rescue him with his stem cells...."

I'm pretty good at smiling and nodding when someone says, "Asher looks so good." I don't know, is that comment supposed to mean something more? Does it mean, "Asher will never be sick again."

I want to get away from the memories, but I can't.

Right now I feel like getting a punching bag and beating the crap outta it.

This is what (my son's) childhood cancer did to me, did to my family. And, I'm angry about it. I'm really angry about that.

We have been spending a lot of time outside. I guess this week it might reach 80 degrees!!

Every day Asher gets stronger, and I swear, taller! A few weeks ago I bought him size 12 1/2 tennis shoes. Today he said, "Thank you for buying me new tennis shoes mom." I really think I might as well just bought him size 13 tennis shoes!

Here is Asher hanging off a handle bar and a fireman's pole this afternoon. This is his new way to 'jump' down from his treehouse (as of yesterday when his daddy taught him this, so he tells me).




I am shocked he is a year post-treatment, already!

It looks like the hearing test, echocardiogram, and brain and spine MRI will be on 3/12/08. I'm not sure if there are additional tests or appointments to make. I do know I need Asher to get into the dentist; it has been a year now. He was cavity free last year, and I'm hoping the chemo didn't destroy his teeth and he is still cavity-free this year. I am also going to make a consultation appointment with the plastic surgeon; Asher asked about having hair on his bald spot (and he doesn't mean hair 'hanging over' the spot like I have allowed it to grow) and he deserves to discuss this with a doctor per his request.


It was 3/13/07 when Asher received his stem cells, when he was rescued back to health, and when he was given a chance at life all over again. I'll tell you, he hasn't disappointed....he's growing, learning, loving, and fighting. I am challenged as his mother. I am abundantly blessed to be his mother.


I have nothing but good thoughts about his upcoming MRI.

Like I have mentioned before, MRI day is just like any other. Any day our life could take a turn. We treasure each and every one right now!

Thanks for checking-in on Asher!


And, for those that check in on me, Asher's mom, I just wanted to mention that I am now off Zoloft, the anti-depressant I had started back on the day after Andrew was born, 7 months ago, (and what I was taking for 3 months prior to conceiving Andrew). It was a mighty-tough withdrawal; I weaned off of it over 6 weeks. I am feeling better now. I think it will help to be off the drug, to get some perspective on my 'real' feelings. I've done plenty of crying the last three weeks. It is apparent that the Zoloft had dried up my tears. But, the tears have now been cleansing. I have some left-over anger, and I need to work on figuring out where it really comes from and how to release it in a healthy way. I have more growing to do, and I always will.

Again, thanks for checking in.


Looking for new inspirational quotes? I added some to this blog and they randomly come up at the top of the left side-bar.

I think I mentioned that one other time, a few months ago (I think?), Asher asked about his bald spot on the back of his head....

Well, tonight, at dinner, out of no where, Asher said, "Mom, what did the doctor's do to me?"

Well, here is how our conversation went (the photo is from 2/6/08 after I gave him a haircut - first time I cut it with a scissors all over instead of using a shaver/buzz cut):


A "Mom, what did the doctor's do to me?"

me "What do you mean, Asher?"

A (feeling the back of his head at the dinner table, while eating dinner) "My hair, isn't there. Why not?" (looking in the patio door, at his reflection)

me "Well, back when you were in the hospital, you got an infection in your blood, and it got in the tissue in your head and made an owie. Then the doctor's fixed your owie and now you have a bald spot."

A "But I want hair there."

me "You know, it looks okay. You can barely tell it is bald there. Remember at your birthday party, no one even noticed or talked about your bald spot. Right?"

A (nods head yes)

me "But if you want hair there, we can talk to a doctor. Do you want to talk to a doctor?" (I didn't say plastic surgeon.)

A (nods head yes)

me "You'd have to have surgeries. Do you want to have surgery again?"

A "No." (looked down at his plate)

me (squishy lips / hmmmm expression)

A (finished his dinner)



Asher is sick again. He had a low-grade fever a few days ago and now has a nagging cough and some congestion. He was very tired today, even yawning mid-day. He hasn't had naps during the day in quite some time now. Alexa was going to have a sleep-over at her grandma's house, so after Aubree woke from her nap, we were on our way there in the van. I brought Asher's blanket and when I buckled him into his carseat, I bundled him with his blanket and told him to take a nap. He did just that, but only on the way there (25 minute drive).

We have had beautiful weather here this past week. Not today. It was cloudy, grey, rainey, and even a bit chilly. But the three days prior to today were absolutely gorgeous. We spent a lot of time outside. Swinging. Sitting. Laying and looking at the fluffy white clouds. Petting the dogs. I think it was 75, slight breeze, sunny - partly cloudy. If I could choose, I would have that weather every day, 365 days a year.

There are so many children suffering, so much cancer, so many losing their precious lives and becoming angels....

I don't blog about very many. I haven't decided why. It was just something I didn't do.

It wasn't / isn't because I don't care, or I don't hope for them, or pray for them, or love them....

I don't know....

I guess I always wanted to focus on my little Asher, in this blog....and....if you mention one child with cancer, how do you not mention them all??



With that said....I wanted to ask you to pray for Madelyn's family.

I just visited her site for the first time a few days ago! Terri entered the Bloggy Giveaway and said she wanted the care package to go to Madelyn.

When I read, today, that she passed away yesterday, my heart sank.

If I am allowed, I will close by saying that I HATE CANCER!

And the winner for the Bloggy Giveaway is:

Jeanine




Jeanine, I will email you. You have 72 hours to respond with a shipping address. If you do not respond, I will pick another winner.

Here are photos of the items that Jeanine will receive: Click Here.

Thank you, to the 80 people who entered the contest! I wish Scott and I could afford to send out 80 care packages! We do send out some, at random, though. A few weeks ago, we mailed a video game to an 8-year-old boy with cancer in Australia. And, in the past, Scott gave one of our old laptops to a mom with a daughter in the hospital (Leukemia). I plan to bring a bag of goodies to clinic in March when we are there. No matter how small, if you can, reach out to the families. From experience, I will tell you, the cancer journey is a confusing, scarey, and often times, lonely experience.

Thank you, to everyone, for visiting Asher's Brain Cancer Journey. Over the last 5 days, we had around 1200 unique visits, which is about 800 or so more than usual right now. I am glad I could raise some awareness of childhood cancer.

If you're wondering how you can reach out to families with a child who has cancer, please click here.

Here are the items! This care package retails over $50! I went overboard on quality/value items! I had actually purchased these items several weeks ago to put a care package together for a little girl in cancer treatment (not a specific little girl though), so the timing for the "Bloggy Giveaway Carnival" was perfect. All items are brand new, unused, unopened, etc. All items are for ages 3 and up. The items are a bit girly....

I'm sure whoever wins can find a little girl (or even, several little girls) that will be able to fill her (their) hospital / clinic time with some fun. I hope these items will bring a smile to her (their) face(s)!













Tomorrow is the day to pick a winner - don't forget to enter and make a difference in a child's life!

I'll post tomorrow morning around 10:15am - see you then!

Asher came down with a sore throat Monday and very stuffed up by Wednesday. The cold doesn't seem to slow him down too bad, so that's a good thing.

(at bedtime he had a low-grade fever (100.5) but it did not return in the morning)

So, I saw this on a friend's blog: Bloggy Giveaways Carnival: Winter '08:



I thought this would be fun. Maybe I can raise awareness of childhood cancer!

All you have to do is post a comment at the end of this post to enter. It is free and there are no obligations.

Due to the size of the item to be mailed, please, only US entries allowed. Shipping cost outside of the US would be too much on top of the care package items.

The winner will receive one care package including all brand new (store bought) items:
1) one Webkinz plush (with unused code to activate at webkinz.com)
2) one coloring book or activity book with appropriate writing/coloring tool
3) one (or more) puppet(s)
4) one puzzle
5) one game - such as Hi-Ho Cheerio

(photos have been added here)

As you can see, this is a care package geared toward a child. My hope is this will go to a child with cancer who is hospitalized. If you want to enter, and you do not have a child with cancer in your family, please feel free to enter and if you win, please consider taking the care package to the oncology floor of your local children's hospital. Or, if you know of someone, send me their hospital address (or send me their blog address / caringbridge site) and I will send the care package directly to them. This is optional. You can keep the package for yourself, but I think it is a good way to reach out to an ill child.

On Sunday, February 3, 2008, at 10am AZ time, I will use a random integer generator to find a winner among the comments posted.

So, enter now! The winner will be announced in a new post in my blog around 10:15am AZ time on 2/3/08. I will also contact the winner if they posted their email address, otherwise, they will need to contact me through the guestbook.

Yellow was his favorite color. He was only a few months younger than Asher.... He will be laid to rest today.... Julian, fly high, little man, you had a good fight and now you're free! Light a candle for Julian - here. Pray for his family.... Thank you.

In speaking with Asher about going to clinic this week, he would respond that he would be going to get a picture of his brain. I reminded him that we did that last month but clinic had been post-poned to January. I told him he goes back for his brain picture in March, two months away.

So, Asher went to clinic today at 2:30pm. It was his 9-month post-transplant brain tumor clinic, but they had asked us to reschedule last month to this month, so he is 10-month post-transplant, however, no tests were performed today so the discussion was regarding December 2007 tests/scans.

The transplant doctor came by the room and said hi to Asher. She said she didn't recognize him, but she recognized me. Then she carried him off to go see a transplant nurse-practitioner that cared for Asher most of the time during his transplant, but she had already gone over to the hospital. She just kept saying he looked so good.

It was a pretty low-key appointment. The clinical nurse, oncologist, and social worker were there. The oncologist checked Asher, although, Asher was being uncooperative today. It was weird, because when we got there he said, "Where's Dr. Etzl?" with excitement. But, as soon as the doctor came in the room, Asher wouldn't look at him, have eye contact what-so-ever, and he wouldn't even squeeze the doctor's fingers with his hands when asked. They asked me a few times, "Does he talk at home? Does he interact normally?" etc.

The oncologist asked Asher (and me) questions such as:

Do you ever see 2 of anything? (not sure)
Has he had any infections? (no)
Has he had any fevers? (yes on 12/24/07 105.5)
Has he complained of any headaches where you could tell he was in pain? (no)
How's his memory? (great - he remembers things from today and even months ago)

He's 41.1lbs and 3'-7" tall today.

His counts on 12/18/07 (9-months post-transplant) were:

wbc 5.1 (4-12)
rbc 4.10 (4-5.3)
hemoglobin 12.8 (11.5-14.5)
hematocrit 35 (33-43)
platelets 275 (130-450)
segmented neutrophils 44 (25-50)
lymphocytes 41 (40-65)
monocytes 10 (4-10)
sodium 139 (135-145)
potassium 4.1 (3.5-5.2)
chloride 103 (96-110)
co2 23 (20-28)
protein, total 6.1 (5.7-8.0)
calcium 9.4 (8.8-10.8 )
bilirubin, total 0.3 (0.2-1.3)
magnesium 2.1 (1.5-2.4)

They said his kidney is functioning fine and all counts/levels were within normal.

We should be hearing within the next week or so regarding the schedule for the March tests....hearing, MRI (brain and spine), and heart or something (I forget, I think ECHO).

When I asked about when they will scan his spine again (they didn't do it in Dec '07), they said they will do it in March. Since he did not have radiation, and on very rare cases a recurrence could begin in the spine, they will scan his spine.

And, remember, because Asher did not have radiation, he continues MRIs every 3 months the second year post-treatment, just like the first year post-treatment.

The clinical nurse ended the appointment by saying, "It was a very tough protocol he followed. He looks really good."

It was, tough, and we are very thankful, to the entire medical staff at PCH, for getting Asher to a healthy state. I do believe without medicine, we wouldn't be where we are today.

However, I also believe "that it was not Asher's time to go." I think the second craniotomy was miraculous. I think healing from the biggest infection / head wound involved miraculous healing. It was also the break he needed in the protocol to be strong for the transplant. It wouldn't matter to me what anyone else says, this is what I believe.

There are memories of crying in those clinic rooms....to smile today felt good. I will allow myself this happiness.

Oh, and I remembered one more thing....I seem to remember a little piece of this appointment as time goes on here....I was asked if Asher was going on a Make A Wish trip. I said no. Then I was asked, "Don't you believe in it?" Then I sat there with confusion, in my mind and heart, and I stumbled with my words, "I guess, not for us." I guess I always thought Make A Wish was for really sick kids. Asher isn't sick. Then I was told, "Well, if you change your mind, it would be a nice vacation." I don't think I'll change my mind, though. Maybe it is just because of our family size....and a trip would everyone would be far too stressful. Also, Asher didn't understand cancer, and he didn't / doesn't understand what a wish is. I took Asher to Georgia in September '07 and he had fun and I have memories with him and he still talks about the trip, however, Scott doesn't have those memories with us. I don't know....

There are moments when I feel guilty for celebrating.

I guess this is the survivor's guilt, although I am just the mom of a survivor, not one myself.

There is never a moment that goes by in a day, when I don't think about another child who is ill, or even may be ill. I frequent the caringbridge sites, other blogs by parents, and I read the stories, which aren't really stories, but lives. Lives which are so affected by cancer. Three children, that I know from online, have passed away in the last week. I don't visit many sites, though, so three is a big number to me.

My life is affected by cancer. I grew up without a dad and that forever left an imprint on my heart. My life is affected by cancer, because my 3 year old son had brain cancer, but now he doesn't. It has forever changed me.

It is very weird, still, that Asher is not in treatment anymore. That we had ten months of go-go-go, fight-fight-fight, and then, bam, in March, we're done! The last ten months, post-treatment, have flown by compared to those ten months in treatment, which dragged on-and-on-and-on. We were given the gift of more time, time without medical treatment. I want to say without medical worry, too, but realistically, I'm a mom. He's my boy. I worry.

I took several moments during the birthday party yesterday, to just look at the people, mostly through my camera lens. I looked into their eyes and I listened to what they weren't even saying....how is it I can feel like I'm doing this, when it doesn't even make sense?


The eyes have it. Not only are they the windows of our souls, they help us to perceive the beauties of this physical world.
author unknown


Since Asher's fight with brain cancer ended, I have seen a lot more beauty, all around. There isn't enough time to really share all that I think on this subject, but so much is beautiful to me, now. Before, things were kinda dark. I guess this is one thing that makes me wonder if coming off the Zoloft is the right thing to do, but....that's another post, another time, too.

Regrettably, I sometimes wonder, how soon will I have bad news to share with our friends....

It is a horrible, horrible feeling to wonder, "When will my son's cancer come back?"

It is a thought in passing.

Like if I was thinking about my tasks for the day....OK, I better put in my laundry, and then start the dishwasher, and then go turn on the irrigation, and then go get Aubree up and change her diaper and then get the puppies out to potty and then get Andrew up, and I hear Asher start talking, he must be up, and I think, I wonder if today is the day he has a stomachache and his head hurts, if I hear him cough, I wonder if he is about to throw up, and I almost want to ask him if he feels okay, but I don't dare, and then I realize the puppies are scratching at the door because they are done going potty and I forgot to get Andrew up and he is now crying....

So, that is what I mean about a thought in passing. Those thoughts all happen in about 2 minutes.

Let's use the birthday party for example....

I wonder, then, did I have this party, did all of these friends show up, because something is going to happen, something bad?

I remembered the last party we had, now....after talking to a few people that were at the party Saturday. It was around Alexa's birthday, I remember, but we called it a "play date" because we didn't want to make a fuss about one child of ours when we never did it about another child of ours. Anyway, I do think it was when she was 2, so March 2006, which was only 2 months before Asher's brain cancer diagnosis....

It's a horrible feeling, like I mentioned.

It isn't as easy as some people might think to just believe, or have faith, or think positive.

I mean, when it comes down to it, my thought is, "God will take care of Asher, either way." It is something I told myself when I got pregnant for the 5th time, after two miscarriages. I knew God would take care of the baby, either way. Of course, that was so different....that made me think a lot about when a person has a soul. Instantly, upon conception, or when a heart starts beating, or when?

Just so much thinking about life, and truly, it started when I was 12. Not sure, why 12, because dad died when I was 8 months old. But, I remember I cried a lot, and I felt angry a lot. I had a difficult time going to sleep at night. I only cried before going to sleep at night. I was supposed to pray before bed. I saw it in the movies. I heard other people talk about it. And, I did. Pray. But, sometimes I was just plain mad. I was growing up without a dad and I was mad at God. I didn't think it was right for me to grow up without a dad. I wanted a dad like all my friends had.

In my years that followed 12, I started to feel like I was receiving guidance. My dad wasn't there, or was he, in spirit?

I don't know....I grew up writing poetry and prose, because I had so much emotion, about life, about death. I've had a lot of years to think about life and death. On one hand, I wish I didn't have that experience, on the other hand, I feel more prepared....

I hate thinking, "I'm prepared, if my son dies," but I do think that. I think with the way I believe, with my faith, I'll be okay. But, I worry about my kids. Asher's siblings.


I wish I had more quiet time to write, now, because I always thought that writing helped me....not get answers, but to come up with a comfort, a faith.

Faith.

It isn't easy to define.

I started this post when my kids went out to McDonald's for a treat (Sunday afternoon). Scott took them. So, I had about an hour to think and with quiet. Now it isn't quiet. Kids are playing. Football is on TV. I can no longer really get those deep, pondering thoughts out through my fingers.


I will end by saying that I know my job is to help my son live. To celebrate life and turning 5 and growing up. It is my job to be positive, to be a good role model. I'm not perfect. I have plenty of flaws. I am human. God loves me. He loves Asher. And, I am so blessed to be his mom!


Now that I got all that out....on to the fun stuff.....


Tonight Asher said, "Before I blew out my candles today, I was turning 5, and then after I blew out my candles I was ten!"

Dear God. I know time goes fast, but my son wants to skip five years?


Here's Asher celebrating his 5th birthday....I added some photos, in an album, of Asher from his party. As you can see, the party theme was spiderman!

Thank you to the 21 adults and 25 kids that came to play and to celebrate life! The turn out from our invitations was awesome! Thank you for bringing him such wonderful gifts...he and Alexa are soooo busy playing today!

Many of you drove many miles, and please know, the party would not have been the same without you, so thank you for the long drives! Those that live close, we hope to see you more often. You're welcome any time! Oh, if you live far, and want to drive, you're welcome any time too! I didn't meant to say that weird. LOL

Thank you Mike and Mike for cooking the hotdogs and to everyone that helped with the kids (your's or not) and passing out cake and food.

Thank you to the ladies for passing around Andrew so I could be hands free and not worried about my baby (who is turning 6 months old tomorrow - can you believe that?!). And, thank you for returning him to me (LOL, some of you wanted to take him home)!

Thank you, Mom, for finding / hiring the magician, balloon artist, and face painter!! They made the party great! The kids loved them!

Thank you to my sister and her husband for coming down from Colorado!

Also, thank you, so much, for helping us to celebrate Asher's 5th Birthday by posting here in our blog. Knowing you continue to think about Asher, means the world to me, as his mom, and to Scott, as his dad!

Here's to another 5 years, with Asher, together with all of our family, on this earth....

^ Friday, January 17, 2003, 9:30pm, I held you for the first time....
I couldn't stop smiling....I'll never forget this moment....
The very moment I became a mom.



I'm excited about his first birthday party this coming Saturday! We have always had private, immediate family celebrations, only. But, this year is different. This year is about Asher, life, friends, family, fun....we're going to have a backyard full of some of the friends who supported us during Asher's brain cancer fight....and my mom will be there....and my sister and her husband fly in from CO late Friday night to be there, too....I'm excited because I don't think Asher knows what to expect....I'm excited because there were many days when I wondered if we would ever have a birthday party for our little boy....I'm excited because I think 5 is going to be a great year for Asher!!



Happy Birthday, Asher-B! I love you more and more each and every day!

This is Asher with Rohr, one of his puppies. He loves them a lot!

While it is really 'wintertime', my deciduous trees are still dropping leaves. These are the last two to drop them. The maroon is a Raywood Ash tree (I have two of these in my yard) and the yellow is an Arizona Ash tree (I have eight of these in my yard). I also have a Crape Mrytle, Chinese Evergreen Elm, and Chinese Pistache trees that change colors and lose leaves, but they have pretty much finished dropping leaves. The rain yesterday helped the process. My lawn is more green now thanks to the rain (I had stopped watering more than one time a week, so the lawn wasn't as green as it was a month or so ago). In any case, I love 'autumn'. I love the color in my yard. I love the cooler weather (many think this weather is 'cold' but I do not). It is fun to play outside with the puppies and the kids!

Asher is 9 days away from turning FIVE! Last night I tried to pick Asher up to give him a hug goodnight and carry him to bed....ummmm....I couldn't do it!!!! Sigh. I guess that means my baby boy is growing up! It is a true honor to watch him grow up. There are a ton of thoughts about this birthday....but I will reflect on those further after his birthday bash!

OKay, OKay....now I am really wanting to take Asher to play in the snow....look at the fun he could have....I must must must take him....it can be his 5th birthday present!! Oh will he have FUN! Hmmmm....now where to go....probably invade my sister in CO! I only wish airfare out of Phoenix was as cheap as I see for other cities....sigh....okay....you all know what I am dreaming of....

OK....my logical husband reminds me that snow is only a couple of hours away to the north....so....we'll be going sledding soon....woohoo!

This year went fast.

I remember all too well how I was feeling last year at this time. Asher had 3 months of chemo left, and a stem cell rescue. I was terrified. I had hope, but it was buried inside so much fear....

With each day that has passed, the pain has gotten less. I don't think I believed I could feel this good inside in only 9 short months. The fear has been buried by the realization of miracles, blessings from God.

Time does heal.

It does.

But, it is not all forgotten, either. Last night I had a dream that Asher relapsed. I remember so much of the dream, that I think that is probably why I haven't gone to sleep yet tonight. I don't usually stay up to see the stroke of midnight. I keep thinking, "I hope it is just because I'm sick and sleep-deprived that I was dreaming that dream...." I didn't even tell Scott about my dream. Anyone who knows me personally, knows what some dreams have meant to me.... I go to bed tonight asking God to take my worries away. Please don't let Asher's cancer return. Please let him keep his miracle, and not suffer again....

I have seen me change in a lot of ways this past year, too. Each year I grow, and I see it, but after I was given more time with my first born baby, I started living more in the now, in the moment. I have seen 'signs' and acted, quicker than I would have in the past. I have gone on an airplane, off alone, to a strange city, to do something for me, even if for only a day of renewed energy. We got puppies! Who would have thought?! Even after I brought the idea of puppies up to Scott (which had not been thought of in years due to having babies, moving a lot (to get our new home), and then Asher's illness), he thought I was crazy and not serious. OK, how many of you all thought I was insane? But, Scott saw the signs, too. We were meant to bring puppies into our family.

Anyway....

We continue to grow in our life's journey, here.

Occassionally, I worry about Asher, more than I worry about my other kids. Then I feel guilty.

One thing I have done in the past three months, more so than in any of the other months of the past five years, is love each of my kids for who they are. I more easily recognize how special each of them are and let them know how proud of them I am and what each one can work on. I try to do something special with each one, even if for only 5 minutes a day.

I have many challenges, as a stay-at-home mom, and there is seldom a quiet moment here in our home, but I am trying so hard to teach respect, independence, creative thinking, compassion, ....

And, I admit, most days I just try to get by. Getting everyone fed (sometimes it feels like that's all I do, feed the kids). Getting all the teeth brushed. Getting everyone educated in one way or the other. Playing with everyone. Getting everyone in bed without Scott pulling out his hair. And cleaning up (which is always last when it comes to clutter-stuff).

I never miss a moment to kiss the kids or be silly. A recent silly was when the kids were almost done with lunch, and I touched Asher's head and said, "Duck." I walked around the kitchen table, touched Aubree's head and said, "Duck," then Alexa's, "Duck," back to Asher, "Duck," and Aubree, and Alexa, and Asher, and Aubree, and Alexa, "Goose!" I'm not sure why I did it, but everyone giggled. I know, I know, I have a rule about no playing at the table....!

Then one night, before bed, Aubree climbed onto the couch, touched Asher's head and said, "Duck. Duck. Duck." She was actually almost slapping him on the head, but oh my gosh, it was hysterical.

I know love got us through the toughest 'cancer' moments, but the silliness was right there with it! The toughest moments were when we couldn't see Asher's smile.

With that said, I want to close by saying how GOOD Asher is, health wise.

On Christmas Eve, maybe 3pm or so, Asher climbed up next to me on my mom's recliner (we were at her house celebrating Christmas). He laid his head on me and fell asleep. I didn't think much of it. Once home and getting him ready for bed, I realized he was HOT. His temperature was 104! I freaked for a second, but then got him some Tylenol and figured it would do its job and Asher would be okay. Of course, then I took the other kids' temps and found Alexa also had a fever, but 101-102 ish. Anyway, Asher's fever got up to 105.5 around 12:30am!!! Still, hardly freaking out, I gave him some Motrin, and again, believed it would do its job. And, it did. His fever went away. We all proceeded to get sick. Alexa actually was already quite bad by the next day, coughing, sore throat, way tired. Then me.