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15 months post-transplant

Brain - Impression: No evidence of tumor recurrence.

Brain - Full Report: Midline suboccipital craniotomy changes are noted. Parenchymal {pertaining to the parenchyma (the key elements of an organ essential to its functioning, as distinct from the capsule that encompasses it and other supporting structures) of an organ} volume loss is seen in the cerebellar hemispheres. No focus of enhancement to suggest recurrent tumor is seen. The ventricles are normal in size and position. No enhancing intracranial lesions are present. Mild gliosis (scars in the central nervous system) is present in the posterior fossa (a small space in the skull, found near the brain stem and cerebellum) adjacent to the resection site.

Spine - Impression: Normal MRI of the cervical, thoracic and lumbar spine. No evidence of metastatic disease (in other words, no spread of cancer from brain to spine).

Asher woke up with a cold today so I emailed the clinical nurse to see if I should cancel clinic tomorrow or just have him wear a mask and her answer:

"Hi Steph, You are so considerate and obviously a Mom who has had a child travel a very tough road. He certainly can still come in and a mask would be a great idea. I appreciate you thinking of others. I look forward to seeing you tomorrow. Annie"

So, I'm going to have my mom over to watch 2-3 of the other kids while I take Asher to clinic. Just don't want to spread more germs than needed. Asher has already said, "I have to wear a mask."

We'll get the MRI results and the oncologist will check Asher over and they will say how great he looks and then we'll head home. I noticed my tummy is in a few knots about hearing the results of the MRI in clinic (I prefer phone calls), but I expect to hear clear scan results. I'm not prepared to hear anything but good news. Most of the time I wish this stuff could just be done over the phone, but like a good friend of mine said, they wouldn't get paid then.

How about the gas prices? I filled only 1/2 a tank Sunday at $4.19 a gallon. Yikes! Seems the only time I leave the house is for medical appointments now!

Asher did his first two hours of neuropsych testing last week but it is difficult to keep him focused on the boring testing. So, I'm bringing him back for about two more hours of testing this Saturday. I'll be signing a release so after the doctor scores everything, she will be calling the school in July to discuss Asher. So far she says Asher is very visual, right-brained. That sounds right.

Here's a photo of Asher yesterday; he actually looked up and let me take a nice photo (no tongue sticking out). He was doing a puzzle at the table. It was picture cards where you fill in the things (i.e. rocket, robot, flower, etc.) with foam shapes. He did awesome at it. He's been running around shirt-less for two days now....with the 114 degree heat, who can blame him. I gave him a haircut last week; his head was always hot with all that thick hair! He was quite mad at me for cutting his hair (talked about being bald, talked about his scar), but I told him it would grow, and fast. The reason it got so short was because he was crying almost the entire time I was trying to cut, so instead of using a scissors, I used a clipper with a one inch guard.

I realized today I'm starting to forget how to do things....

I went to admitting to sign-in and got Asher's paperwork in record time and then sat back down. Then I started to wonder why they weren't calling Asher's name. Then 10 minutes passed....then 10 more....then I was like, what the heck....

OH! Wait, I'm supposed to go down to radiology and give the paperwork there and sign-in and fill out more paperwork.

What has it been, only three months since I went last? How many times have we done this in the past two years?

Yeah, so it is nice, to be getting a little further away from the memories.... Not so nice feeling dumb, but.... Whatever.


All went well at the hospital today. We checked in, Asher played Toy Story on their video machine, I gave him a smooch and high-five, then he went off with the nurse to have his MRI (he talked with her about his boat (remote control one for the pool) as they walked off together and I walked the other way), then they called me in because he was done, the volunteer told me his 4 year old's name is Asher, I saw Asher (almost couldn't find his bed) all bundled in blankets, the nurse that took care of him post-op laughed because "Asher was popular," everyone knows him, she took out his IV (in his foot), then I asked her to bring a popsicle, a big colorful one (she said, "Oh, he wants a bullet?"....I didn't tell him it was called that, I thought that was weird), then I helped him wake up, he said he wanted to go home, I put him in the stroller (thankful I remembered it this time as he is 43 lbs and too far to carry out to the parking garage!), and started outta there, with Asher saying, "I want to go home," while holding his popsicle. On the way out, we ran into the M-Th, floor 2 nurse, "A," and she said, "Well, it is a good thing Mom is here or I would not have recognized you, Asher." She said we made her day.

The neat thing is, Asher and I have a good time going for his scans, now. We laugh, and giggle, and talk, and it is nice, just us. We don't get enough 'just us' moments. Three times Asher said, "Mommy, I love you," while we were at the hospital....and that was a lot seeing as that was all in one hour (and the rest of the time he was sleeping). I rarely hear that at home!

We were gone from 6:30am-11am. Not bad at all!


A good online friend, Ryan's mom, said my last post gave the feeling of peacefulness....

I am calm, and peaceful. I don't mind going for MRIs and treat them like any other 'normal' medical checkup, now. I don't even need the results right away.

I'm truly living in the moment.... I guess.

I do occasionally have the 'what-if' thing going on, and yes, I think about it when Asher is in the MRI and I'm out waiting for him, but today, I was more thinking about Alexa, in Ohio, who is in the hospital because she has a fever....I think about the other kids....and I sit and pray for them, as I wait for Asher to be done with his little nap....


Thanks for the notes/emails today & thanks for checking on my sweet boy. He's a huge part of my everything, and it means so much that you check in on him, more than you will know.

(Two years ago, 6/15, Asher had his 2nd and final craniotomy to remove his brain tumor. It was a miraculous operation and would be just the first little step towards complete healing.)

It is that time again. Tomorrow is Asher's routine MRI checkup. It is bright and early; we'll have to wake him up to take him there.

I told him today, during breakfast, about going for his brain picture. I told him his dad would wake him up early to go and after his picture and he wakes up he can have a special cheeseburger. He said, "And a popsicle?" He likes that now, getting a popsicle in post-op when he wakes up. It made me smile when he said that.

I expect nothing but good news....a clear scan!

Next week is his neuropsych evaluation at the hospital. I'm going to be interested in seeing how that goes, if I'm allowed to watch this time.

The week following that is clinic appointment....I don't think I'll have the MRI results till this time (as last time they said they do NOT do them over the phone).

So, I'll update again when I have more news.

Thanks for checking in on my precious boy.

2 years ago we saw a picture of our 3-year-old's brain that would throw our family into nightmares, night after night, for awhile....

2 years later...

is now...

We have come a long way, together, in 2 years. Andrew might have only been a dream 2 years ago, but even he was part of the plan for healing. We are complete. We are healing. It takes time, and Zoloft. I went back on it last month, or whenever that was, because I was m-i-s-e-r-a-b-l-e. Unless you have suffered with depression, I couldn't even tell you how it felt to go off the Zoloft, not the first time when I got pregnant with Andrew, and not the second time this past February....but I'm doing better and I've decided I need it now and it is okay.

We celebrated Baby A's 2nd birthday today, just immediate family. She turned two on 5/20. We had a party just the 6 of us. The weather has been so beautiful here the last 3 days after the cold rain we had at the end of last week.



To whomever catches our balloons, may your wishes come true, too!

Please pray for Alexa. Not Asher's sister, Alexa, but a young girl in Ohio. She was diagnosed with the same brain cancer as Asher, about one month before Asher (so 2 years 1 month ago). I had followed her journey through the last part of her treatment up to today. In her latest routine MRI, three new spots showed up in her spine (not in her brain). This cancer is known to spread through the CSF, from the brain, to the spine. She never had it in her spine before and her spinal tap came back clear (I don't understand this). Several doctors have all concluded, it is Medulloblastoma recurrence. I think she was only out of treatment 10 months or so. Please pray for her as she fights her fight again!



Note to self: radiology will never stop scanning Asher's spine just because they feel like it

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.