Late May 2009 - July 2009

5-22-09 (+805) (Three years post-diagnosis & Baby A's 3rd birthday celebration)


mid-June (swimming in our pool - getting lessons from Mom - first time swimming without floaties)

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.

I can't believe it has been another 3 months!

They have been wonderful months!

Asher is doing so much better running. Last night he ran down a hill, that has landscape rock on it, and was going pretty fast towards the grass and I wanted to leap over to catch him (but I was too far and I didn't dare, he's a big boy now). He got to the grass, with no balance issues, no feet issues, no pain, and, with the same speed, he kept on running in the grass.

I think he has already forgotten all about the 6 months of hospitalization and 10 months of treatment!

I haven't completely forgotten, but much of it is far from my mind!

I even have little to no anxiety about his MRI tomorrow!

I'll post again Wednesday night with results from the MRI, blood tests, and even a little surprise!

Thanks for thinking of us!!


^Asher in his playground / treehouse in the backyard, 12/12/07, 9 months post-transplant.

ETA: Tonight while talking in bed, Asher said, "When I go to see Dr. Etzl (that's his oncologist), he will shave my head again." So....we talked about why his hair fell out during chemo and I told him he is just getting a check-up and the doctor is going to say he looks great!

How is it already November 12th? Wow!

We had a good Halloween! Not enough time to do all we wanted, but we (I mean, I) did get two pumpkins carved, the kids in costume, and trick-or-treating was fun for everyone.

Now, as we approach Thanksgiving, I think about all that I am thankful for.

The biggest, as I am sure you know, how can it not be obvious, my son is cancer-free.

CANCER-FREE

This is part of the brain-cancer journey we hope lasts forever, but we fear it may not....I remember when we had the last clinic appointment, the oncologist and the neurosurgeon's assistant were talking to each other, and I caught part of the conversation...."With kids that do not have radiation, we do MRI scans every three months for longer than we do if they had received radiation." The is what hangs over my head the most....we didn't do radiation....did we make the right decision. I think we did. Today I know we did. Will I think the same thing tomorrow....time will tell.... The next MRI has been scheduled: Tuesday, December 18, 2007, 10am.

There is always doubt. There is always wonder. But, we live today and enjoy it. The only thing I am doing wrong is avoiding getting Asher in school....I have this thought in the back of my mind to not let go of the rest of this year with him at home with me. What if something were to happen to him....I would never regret keeping him out of preschool. I like seeing him with Andrew every day, something I didn't get to see last year when Aubree was a newborn. With that said, it may be time to send him to school in January. He is yearning to do more learning than I can do teaching. Please pray that we will all make the best decisions and not live with regret.

The thing about time going fast at age 34, I can remember my life at 33 like it was yesterday. I still remember my friend Barbara coming in with part of our Thanksgiving meal (my AZ moms group provided us with a wonderful meal) and I wispered to her, "I think I'm pregnant." Shortly after she left, I took a HPT. Now my baby is almost 4 months old and the great thing about having a baby that wasn't 'planned' or expected (by Scott and me), is that the miracle of life is much more appreciated. Of course, we know the miracle of good health and good life after Asher got cancer, but now our house is a bit more dirty, more cluttered and messy, and our arms are more full of baby. Having Andrew has relaxed me so much more. I have realized that I can not make time go slower and I certainly can not know how long my baby will be with me, which ever baby that may be.

Happy Thanksgiving to all our blog readers! May the reflection of thanks be full in your hearts.

This weekend is very special to me.

It was a year ago that I would bring my son home from the hospital so his head wound could heal before more chemo.

It was a year ago that he was cancer free after finishing round 3 of chemo a month earlier (but we wouldn't find out for another month after the Nov. '06 MRI).

It was a year ago that we would have all three of our children home, together, our family, and we would celebrate Halloween together.

It was a year ago that Scott and I conceived Andrew (had to throw that one in...we always said that thanks to the doctors and nurses (for letting Asher go home) we have Andrew - can you believe he is 3 months old already?!).

I was thinking yesterday about how we would do trick or treating this year with 4 kids and still hand out candy. Last year we put out the candy and left it for the kids to self-serve. We had to have two strollers because Asher wasn't strong enough to walk on his own and he had the vac thing attached to his head and we had to find a way to carry that around. A stroller worked best. Aubree and Alexa were in the other stroller (Aubree only 5 months old). This year we could have Asher and Alexa walk and Aubree and Andrew in one double stroller and one of us stay home to hand out candy...but our neighborhood is dark and I would worry...so...I think we'll do the self-serve thing again this year and enjoy trick-or-treating together. I think Grandma Val is going to come by in costume to surprise the kids, too. Also, a neighbor has invited the neighborhood over for fun prior to trick-or-treating.

Asher didn't want to go to the pumpkin patch today, he said. He is almost all better after his cold, cept his voice is still a bit funny with the lingering congestion, but he felt fine. (He was sick first, so he got better first...the girls and I are close behind though.) I think Asher just doesn't realize / remember what a pumpkin patch is. We'll go tomorrow.

Today was more yardwork. My grass seed took and came in nice, except it was striped a bit. Nice. So, I had to go out and add more seed with the spreader, walking slower this time to get it to go in the rows that didn't have any or enough. Ended up using 2 more bags....I only used 2 bags to begin with. Each bag is for 20,000 sq ft according to the directions on the bag. The front lawn is 6,400 sq ft. That's a lot of seed, but necessary to get it to look nice. I just hope the striping goes away and when I mow for the first time it still looks okay. I still haven't overseeded the backyard lawn...being sick last weekend slowed me down.

Anyway....

So, I also trimmed bushes, trimmed some palms, and played with the kids. The kids keep busy in the yard while Scott and I work. Scott was fixing some trees (3 blew over to 45 degrees in the wind storm last week) and irrigation leaks and stuff. When I rested on the patio the kids were playing with water. Their favorite thing to do. Asher decided he would "wash his hair"....


^Asher at home, in the backyard, 10/27/07, "Washing my hair," he says.

At least it was 90 degrees out and the water cooled him off a bit from his hard play. He wanted to go swimming but I wouldn't let him do that! The water was cold. Whatever he chose to do today, sure beat last year!


^Asher in the hospital, 10/27/06, after his head dressing change under anesthesia, not quite awake yet.

Hope all our blog visitors have a wonderful Halloween!

10/28/07 - added pumpkin patch photos - look over there on the left under photo journals

This was a special trip that I (Asher's mom) planned for Asher. We paid for it. This was Asher's first time on an airplane.

Here is what we did:

Tomorrow is Asher's half birthday; he will be 4 1/2!

Yesterday was as good a time as any to get his new Superman bike out of the box (that has been in the garage since Christmas) and put together and ridden by this very happy boy!

So, Asher is officially back swimming and loving it! The first evening (7/2) we took him he was scared off the steps, even with arm floaters on. He wanted to remain on the steps, for the entire hour. Then when Aubree was napping this morning, I took the big kids in and Alexa does fine by herself with arm floaters on, so I took Asher by the hand and swam with him, told him to "Relax!" and "Close your mouth!" and a few other things and after about 10 minutes he realized he wouldn't sink if I let go and all was great! He was swimming from one end of the pool back to the other. He couldn't wait for Scott to get home from work tonight and to tell him he wasn't scared anymore and he wanted to show him. So he did just that!



And, this smile is proof that he has gained the rest of his life back....the final thing he couldn't do because of cancer....it has been 14 months since he had been swimming. I'm really thrilled for him and I'm nothing but happy, even with tears (of joy), to see him smiling, laughing, happy, and living! Especially after watching him last night being thrilled and so happy watching fireworks, which, by the way, we were able to do from the comfort of our own front yard because a high school put off 30 minutes of fireworks a few miles from our home (thanks for letting me know about it Kate)! We even had some friends come watch with us and that made Asher even happier! These are the moments we just don't take for granted (anymore)....small moments, usually only lasting 30 minutes, but they mean so much to us! I can't help but thank God, each and every day, for these moments.

DAY +100!!!!!!

I was up around 3:30am to go to the bathroom and, typical of late pregnancy, couldn't turn off my mind so got up for about 1 1/2 hours. Then I woke at 6am after a dream and went to help get Asher up, lines flushed, clothes and sandles on, and toys picked out, and into the van and off around 6:20am. Hopefully traffic won't be too bad. These two incredibles have been his favorite and they came from the Kenzie Kase way back when Asher was in the hospital. And, I'm not the only one up early this morning. When I went up to get Asher up, he's still sleeping but Alexa was up! That's pretty early for her to be up. After my shower, got laundry going...Asher's diaper overflowed (but we are almost done with nightly fluids, yahoo!)...dishwasher going, swimming pool water tested, and about to start cleaning and it is only 7am. That's how I'm going to deal with not being at the hospital sitting in the waiting room while Asher has his MRI, chest xray and blood draw. Alexa is quietly playing in her playroom and Aubree is still sleeping so I'll start breakfast once she is up.

And, AGAIN, thank you for the emails! I had a few tears in my eyes this morning as I read three new emails! It really does make it easier, knowing people across the world are thinking about my boy as much as me this morning!!

OH, AND, I did get an email yesterday from the transplant coordinator saying we should hopefully get a call from one of the transplant doctors by end of the work day Friday; that is when they hope to have the MRI results. And, hopefully the hearing test will be at 7am Tuesday (6/26). And, we should call and schedule a clinic visit for week of July 9th so the transplant team can see Asher one last time and then go over the test results and then Asher will be 'given back' to the brain tumor oncology team.

UPDATE #1 (9:05am): He went under around 8:30am because anesthesia was a bit late. He should be home around noon at the latest, I hope.

UPDATE #2 (11:38am): He's home. He can't walk straight, but that's just the anesthetic wearing off. He's watching a little TV so he can just rest on the couch. Scott said Asher did so well! He woke up in a good mood (how can that be???) and said, "Daddy, I don't want to be at the hospital anymore." So they left. Scott said Asher ate a cheeseburger on the way home. It must have been the special cocktail that Dr. Maze gave Asher prior to him waking up. Dr. Maze was Asher's very first anesthesiologist; he's a good guy. I remember one time he went into his schedule and changed it so he could be there for Asher during his surgery! Usually if we find an anesthesiologist we like, they often just tell us they go where the schedule takes them and we can't really request them. Anyway....feels so good to have him home. I got the family room all dusted, blinds and all, and vacuumed, and 3 loads of laundry done. If I could have slept, I would have. The girls have both been napping since 9:45am! Off to start lunch for the girls and me. Check back tomorrow; we should have the results then! (I'm still loving all the emails! You all make me smile!)

HOME SWEET HOME!!!! ASHER IS DONE WITH TREATMENT AND CANCER-FREE!!!! NOW WE PRAY IT STAYS AWAY FOREVER!!!!

3-31-07 - Home and Happy!!!!

Water balloons are so fun!!


4-3-07


peekaboo with Aubree


4-4-07 - playing with Alexa on the couch


4-6-07 - this is his backpack with his pump and (1000mL) IV fluids in it (he's hooked up 12 hours from around 8pm till 8am)


4-7-07 -




4-8-07 - Easter morning


4-10-07 - outside




4-13-07 - note the brown marking on his forehead / head, that isn't hair, it is discoloration, dark skin left from the thiotepa, much of it is still peeling (especially from his neck and back)






4-15-07 - checking out the new van


4-19-07 - new tennis shoes, size 11


4-20-07 - scar on the back of his head - scratching at it and making it bleed


4-21-07
New Car Seat

At the tree place looking for some new trees to replace at least some of our 37 trees (mainly the Ficus, Jacaranda, and Thevitia) that froze this past winter - Asher rode in the umbrella stroller and held onto the back of the double stroller to make a stroller-train LOL


4-23-07
Asher and Alexa played ALL day and I think there was one minor fight and they worked it out themselves. I think it was one of my most calm days in months!


4-29-07







Summertime Fun!











4-30-07
Day +48
Looking so handsome as his new hair comes in!

See more photos from 3/13/07 - 3/16/07 in the Autologous Stem Cell Transplant Photo Journal #1

3-17-07
Still some red (back and forehead) but mostly "tan" looking, splotches of different colors, peeling by where his dressing change tape used to be) - Awake from 6am-12pm, watching TV, playing balloons, playing Sims2 with mom



Playing with Daddy (he came to visit for 4 hours or so) - painting his window with paints that child life brought in





3-18-07



3-19-07






3-20-07 - Asher receives FFP (fresh frozen plasma)


3-25-07


3-27-07


3-30-07 - Discharged at 6:45pm!!!! First photo is Asher waiting for the elevator to leave the 2nd floor at PCH. First time we ever had Asher WALK out of the hospital on his own two feet (instead of carry him or pull him in a wagon)! That's his special mask he has to wear now, when he is out in public or in really windy outside areas, until Day +100.

This morning at breakfast Asher said, "Mom, we had a good day in the pool." The kids sure did have a fun day yesterday; they were out in the pool already first thing in the morning (well, after we blew it up and stuff it might have been 10am by then)! It feels warm already in the morning and gets to in the 90's for a high, already. I got a $30 blow up pool on Saturday....has a basketball hoop and slide even! $30. Thought that was a steal, especially for how much fun the kids had. (By the way, ToysRUs has this pool for $30 and Target had it for $40.) Our inground pool is under re-construction still so that is why I bought the blowup one Saturday, and Asher had actually asked for one the week before. Guess he just "remembered" us having small blowup play pools before. But, with Asher having a Broviac in still (till at least end of June) this really is a better, safer option.

Chemo Round 6 3/5/07 - 3/10/07 (see Chemo Round 6 Photo Journal)
Days of Rest 3/11/07 - 3/12/07 (see Chemo Round 6 Photo Journal)
Receive Cells 3/13/07
-------------------------------

3/13/07 - Asher receives his FOUR bags of stem cells (from 10:51am-12:20pm)
Asher before receiving his stem cells

Childlife made the signs for his room

Opening the freezer


Removing one "cassette" (which holds one bag of Asher's stem cells)

Removing the bag of stem cells from the cassette

Putting the bag of stem cells into the "bath" to thaw

Still thawing and turning a darker red color

Checking to see if thawed (and gently mixing?)

Passing on to one nurse

Showing a bag (this was the smallest bag 1.9x10^8 cells) and label

That nurse brings the bag to Asher's nurse and they compare the I.D. on Asher's ankle band to the one on the label (for EACH bag)

Asher's nurse prepares the bag, attaching it to the tubing she has already primed (for EACH bag)

Asher's nurse hangs the bag on his IV pole

The infusion begins

Asher receives the stem cells through the tubing and then through his Broviac, almost immediately he has a terrible taste in his mouth (from the preservative) and begins to vomit

A syringe is used to get as many of the cells out of the bag and tubing and into Asher

Empty bag!


After it was over, while vitals were still being taken, Asher playing with a race track and three cars that child life gave him during his infusion

Truly LOVES this frog and lizard


3-14-07

Wanted to color with crayons on the posters childlife made him & Tracing his hand


Taking a nap


3-15-07
Really red/discolored skin
Playing with his train on the floor mat on the floor

Listening to mommy's ipod and then fell asleep listening to music



3-16-07
Really red/discolored skin
Fevers today





See more photos from 3/17/07 - x in the Autologous Stem Cell Transplant Photo Journal #2