Asher's neuropsych evaluation was about what I expected...I don't have a written report, as it was just the parent conference today.

Asher's IQ for three areas was between 92-99, so all fine there.

He's below grade level in a few areas...

One area I remember her saying was hard for him was a shopping list....he was supposed to remember a shopping list, and then even cluster the items in the list into categories (i.e. food, clothes, etc). Then after the first shopping list, he had to remember another one....yeah, that didn't go well.... She said that is a sign that he needs to learn math, take a break, work on reading, take a break, and separate each subject like that in order to process.

Memory even looked good, however, a test that has him look at faces and then asks which faces he remembers seeing was very difficult for him. I asked her if it could be due to vision problems (as she said a similar test that had dots was not as challenging as the faces).

She did notice testing anxiety.

She did not see attention problems.

She noticed he is still shy, but he has matured and had no problem having a different gal in the room performing the tests, even when she left.

She highly recommends I do a 504 plan....even just to address his loss of vision.

Next testing is in two years, I think, and she said she only tests ages 2-5 (she did Asher's as a favor and because she wanted to see how he was doing, she said), so we will be with a different doctor next time.

We should have the full report by the beginning of the school year, early August.

We went to clinic yesterday. Asher's MRI was "crystal clear." His hearing is normal. All blood tests were normal. Everything is just fine. Asher has graduated to MRIs every six months, now, instead of every four months. They also said because he didn't have disease in his spine originally, that the spine no longer needs to be scanned. Last year they told me this, and then I asked if anyone relapsed in the spine and not the brain, and if I am remembering correctly, the answer was yes, and she was five years out. So we continued scanning the spine each time last year. Well, I'll just say, I'm not ready for 6 month intervals, but we carry on....
<----Asher on dome climber at home

Asher had his OT evaluation today at 8am. Today Andrew and I went with him. He cooperated really well and called the therapist by name (after only hearing her name one time right at introduction). He does okay buttoning buttons, but taking them back out is more difficult for him. He is only a little behind for his age group. The therapist said since he can write his first name well for a 5 year old, he will not get OT assistance through his school, and doesn't appear to need any weekly assistance through the hospital (her words). Schools only help when kids are 'way behind,' she said. She said I could call her or email her if I have concerns, though. She gave me some pvc pipe insulation, a piece cut off, to put over his pencils. This will help him when he is writing. She is sending me a list of exercises to help at home; she will be sending it with the report in a few weeks. In the mean time, she gave me a chunk of putty, too, kind of like silly putty. It is more resistant than playdoh, so will help strengthen his fingers. He could catch a ball if it was a light weight ball, otherwise had trouble. He also seems to not throw overhand, only underhand. He has weakness in his abdominal muscles....for instance, 'curling' the body inward or outward was a challenge for him (i.e. laying on his belly (or back) while picking up his legs to the hips and his arms and head at the neck). He definitely has almost no balance when he's on one foot, as I said yesterday. That's about all I can remember, till I get the report. She would like to reevaluate Asher in 3 months or 6 months. I think I'll have him go back at the same time as PT in January when he turns 6.

Asher had a PT evaluation at 8am at the hospital today. Scott went with him.

When the therapist talked to Scott afterwards, she said she had read his history prior to him coming in and thought, "What will he be like? What will he look like? What should I expect?" She said she was quite surprised at how well he is doing for all he's been through. He cooperated well. She said Asher is about 6 months behind other kids his age. He can't stand on one foot, still, but we knew that. She said she sees his fine motor skills are the weakest, which will evaluated in depth tomorrow. She wants to see him back in 6 months to reevaluate him; this will be around his 6th birthday.

Here are Home Activities and Play Ideas to help Asher (which she gave us):

-Overhand throwing with different sized balls and types of textures, start working on 'targets' (for 5-6 year old, we use a 2ft x 2ft target)
-Catching with different textures, sizes, and weights of balls
-Anything in the water/pool: play games, have "races" in the water with walking or moving, kicking with kickboards, etc.
-Standing on one leg ('make sure to switch legs') for activities during the day: during commercial break on t.v., brushing teeth, combing hair, playing catch
-Pillow fights with couch cushions for strength, endurance, and coordination
-"Red Light, Green Light" and "Simon Says" types of games for coordination, quick responses, separate upper body vs lower body types of movements
-Step-standing for catch/throw activities: one leg up on a small stool or step while the other is on the ground

Asher doesn't pay attention.

He is very inattentive.

Inattentive.

Inattentive.

This was repeated to me a lot, today, while I heard the results of Asher's neuropsych evaluation from last month.

I know....I know....I'm worried about it. It has gotten worse over the last year, too. She told me he should be okay, depending on the teacher, this year in Kindergarten, but to be prepared for the possibility that he may need medication.... (Nothing can prepare me for that.) She said he will need to sit right by the teacher; if there are rows, he should sit in the very front. She said sometimes in kindergarten they sit in a circle though....

Other than that, which is a pretty big problem for him starting school, he is average or above average on most of his testing.

He is very visual. He will do awesome at visual learning.

He is below average when it comes to verbal stuff. If he hears a story, he can't repeat it back, for instance. But, if he is given a choice (i.e. was it a brown dog or a black dog in the story?), he will do better. And, he can't list things. For instance, if asked, "List as many animals as you can," he will say, "Lion, 2 lions, 3 lions," until the doctor says, "OK, more," and then he will say, "Rhino, 2 rhinos, 3 rhinos." When asked for a grocery list, he said, "Strawberries, strawberry shortcake, strawberry cream...."

She said she doesn't see Asher asking for help or clarification if he needs it. She said he would just sit and do it, best he could, but maybe do it wrong, and then be crushed (disappointed) when he is told it is wrong.

She also said he is a 'serious' boy, although, a few times he purposefully answered with wrong (not pertaining) answers, and then smiled at her. One time he started whining and she told him to stop whining and he did. She said he took it fine; his feelings weren't hurt. She said he needs a gentle but firm teacher, and he needs big praise for success!

He has a good memory, she said.

His IQ is exactly the same, testing on 2/07 and 6/08. I think she said it was 98.

She said he is VERY shy and will be for awhile till he gets comfortable with the teacher and other kids. She said, most likely, when the teacher calls on Asher he will just stare at her and not answer (he did that to her at times, she said).

She said she also noticed he was clumsy when he walked. I told her I noticed the same thing when he has shoes on. It seems to have gotten worse, over the last year. He trips over his own feet. She said he should have a PT evaluation, as well as a OT one and a speech one. She feels he doesn't talk or understand speech real well / doesn't have a varied vocabulary (not sure how to say that). I don't know about that. I don't understand, after all this time, why they are waiting till now to recommend these evaluations. Why couldn't the oncology team recommend/order the evaluations prior to now, only 10 days away from school starting?

She also said I should call the school and discuss the IEP ("Individualized Education Plan")....or even a "504 Plan." He definitely qualifies, she said (even without radiation). She said once it is in place, it is good for up to three years. The fact that I would have a bunch of tests already done, at PCH, would be helpful, as the school gets so busy, she said. Although, if the school wants to test themselves, let them, she said. I don't know why I haven't wanted to do this....I'm so reluctant....

I'm feeling pretty emotional today, deep inside. It isn't just that my baby is starting school, it is my baby that had a very serious illness that is starting school....

I don't want to let him go....

I'm excited for him, though....really....all that he will learn....the friends he will make....

I'm just scared, in general. I need to let it go, though, because I know Asher can sense it. We are very close that way. Maybe I can double dose on the Zoloft for a month or so. Hahaha. Wouldn't it be nice if there was a magic vitamin to take all anxiety away....

On a great note....Asher and I were in Anaheim, CA this past weekend at a National (model) Train Show and Disneyland. We had a great time, a really great time. We even flew instead of me driving 11 hours, so we got more time in CA Wonderful memories for the two of us.... I wish Scott had wanted to go, so that we could all have been together, but, I loved the one-on-one time with just Asher, too. I'm glad for those memories.

The Audiological consultation report came in the mail yesterday and it reads:

"In summary, normal hearing sensitivity, cochlear outer hair cell and middle ear function was measured for both ears from 500-8000 Hz. Normal cochlear outer hair cell function for the left ear represents an imporvement from the 2/23/07 evaluation. Asher continues to exhibit a moderately severe hearing loss in the ultra high frequencies, which remains unchanged from February 2007."

Day +105

In 1/2 an hour Asher will be leaving for his hearing test (7am) and his Broviac removal surgery (9:30am).

The anesthesiologist called us at home last night at 7pm to discuss anesthesia and pain meds. I don't ever remember them doing that.

All should go well today.

Update #1 (7:50am): Hearing Test
High frequency hearing is within normal range now. Dramatic improvement in left ear normal ranges. No hearing aid necessary. (I'm not Scott got the correct info - read more here.)

Update #2 (12:05pm): Surgery & Home
Asher went into surgery about 9:40am, and after my OB appointment, I met Asher and Scott at the hospital entrance around 10:35am to take Asher home. Quite the fast in and out just like we thought it would be. When I called them to see if they were done, Asher wanted to talk to me and he was crying a little and said, "Mommy, my catheter is gone." I think it was a bit emotional for him. He was very protective of it. Always helped me take good care of it. I know he won't miss it, but he is a lot like his mommy in that he is emotional about change. He had that particular central line since January 2, 2007. I guess Asher can actually go swimming in 5-7 days. Right now, though, Asher is asking to go swimming NOW and he says he is already healed. So, hopefully the 7 days go by fast. I can't wait. He used to love to swim. At the lunch table he said, "Lexa, the nurse took my catheter out." He already doesn't seem to mind that it is gone. Asher had slept all the way home, and I even drove a little further west than I had to to give him a chance to sleep a bit longer. They had given him a little demirol for pain; we have oxycodone at home if he needs it.

Update #3:
Scott told me when he was waiting to be called in for pre-procedure, a nurse came out, looked around and left. Then 10 minutes later she came back out again, and called, "Asher." When Scott and Asher went in she said she was sorry, she had been looking for "Mom." Then he said while they were waiting inside at pre-procedure, all the nurses kept poking in looking for "Mom" and asking, "Are you Dad?" and "How's Mom?" and asking how Asher was doing and how his head was. This brought a huge smile to my face! I think I had met almost all the nurses there when I was taking Asher 3 times a week for his head dressing changes for his head wound last fall. I seriously think their smiles and friendly hellos got me through those visits! I'm so greatful to all of them for caring for Asher, and our family!

Transplant: Day 4

When I got to the hospital today shortly after 10am, Asher said to me, "You came back." I said, "Yes, remember yesterday I said I'd be back tomorrow. Here I am." I'm glad to see he is trusting me.

Asher enjoyed his shower today, did his 12pm mouth care without arguement, and his dressing change went very smooth. He barely flinched when the tape was being removed today.

Today's chemo (carboplatin) started around 12:50pm. Really can't even tell he's receiving chemo at this time. It's 2:10pm and Asher is still going strong, in a good mood, playing with car race track and playstation. He refused any lunch, which Scott had ordered before going to work, but did drink 1/2 a carton of milk.

PT came in around 1:30pm and she said his ankles feel great and Asher is looking really good. Asher showed her how his car race track works.

Scott has taken a break and gone to work (since around 12pm) and I think he'll be back around 4pm in time for us to both meet with the doctor that did the neurodevelopmental tests on/with Asher.

----

Asher was still napping during our hour with the doctor. The results of the neurodevelopmental tests were pretty consistent, being either below average or well within limits. Many of the below average items were much explained/expected since he had a brain tumor and two craniotomies, and 150 days in the hospital in the last 9 months, such as, decreased fine motor sills, inability to potty train, etc. He was better at visual tests than verbal ones, although I am not sure this is always because he is shy, which is what so many people say about him lately. I think he is more reserved with his trust and since he has little to no control over chemo and hospitalizations, when he can control something, he often chooses to not participate, such as these neurodevelopmental tests. With that said, Asher performed pretty well for the doctor, and, interestingly enough, the one session I sat with Asher, he was above average. We discussed a bit about getting a consult from OT while he's in the hospital this next month as he has difficulty holding a crayon or pencil and getting the results he wants with them. Most likely he will be able to continue with therapy, such as speach and maybe even PT and OT.

When he woke up from his nap, we were just finishing with the doctor, and he pretended to go back to sleep, but then started throwing things off his bed at us. He is so silly. That reminds me, during one of his neurodevelopment tests, the doctor said she told Asher, "You silly boy," and he responded, "That's what my mom calls me too."

He was in a super good mood when he woke from his 2 1/2 hour nap. He ate some green beans and then a ham cheese lunchable (again - actually, the kitchen had made this one look like a lunchable all on a plate because they had run out - I was pretty impressed that it looked just like it, ham in circles and cheese in squares and some crackers).

Then he played with the ball from PT with daddy and me and a little baseball, swinging a bat, and this and that.

He was okay about me leaving and when I got home it was just in time before Alexa went to bed (actually she had just gone to bed but gotten up when I got home) and I had her call and talk to Asher and they had a good talk, even talked about Humpty Dumpty.

I'm going to miss my little guy now as I won't be going during the yucky skin-problem-causing chemo. I'll return Monday night or Tuesday morning so Scott can get back to normal work at work instead of working from the hospital. The only concern might be the smell of the preservative they use with the stem cells; we have been warned it smells bad! My smell is so ultrasensitive (as is my stomach) when I am pregnant, so if the smell is too terrible (have heard it is like fish, or sulfur, or garlic), I may have to hold off going full time till around next Thursday or even Friday.

I'll end with two quotes:

A friend emailed me this one recently (and I have read it before (and posted before) but is always nice to read again):

I wanted a perfect ending. . . Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious ambiguity. -by Gilda Radner

Another good one:

You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do. -by Eleanor Roosevelt

Thanks for your continued prayers and support; it helps us to know we're not alone!

Asher is DONE with all his pre-transplant testing!

He finished the neurodevelopmental tests, although he had a challenging time today. Since both Scott and I were there he wanted one of us. At first Scott went in and it wasn't working so the doctor came out and asked for me to come in and whatever I said and did with Asher in the room got him motivated to do lots and get almost all of what the doctor needed from him done. The computer test was challenging, like it was last time, but Asher did use the mouse a bit and then just stopped saying he didn't want to do it.

Oh, and a funny story....during one part of pictures/pointing testing the doctor turned the page and asked Asher a question (I don't even remember what it was now) and his eyes caught the open can right away and he said, "Which one is open?" The doctor just laughed and laughed and laughed, so of course I did too, and of course Asher thought that was great he made us laugh. The reason it was so funny is because about 15 minutes earlier she had been on a page with four pictures, one being an open can, and she asked Asher, "Which one is open?" and he pointed to the open can. He has a good memory and it was nice to just have a funny moment during the boring testing.

ALL tests came back GOOD. His liver was JUST within normal range. His blood was positive for something (similar to HIV but not) and it may be a false positive so they are sending it off today to be tested further but it takes three weeks. All should be okay as he tested positive for this in the past and it was a false positive so we're just hoping it is a false positive again. The transplant doctor feels it is okay to proceed to transplant without waiting 3 weeks, mainly because then the tests all have to be done again and we'd be in the same boat if he tested positive again. And, Asher did test positive for Hepatitus C on one test but a 2nd more accurate test, done at the same time, gave a negative result, which is the correct result. I'm confused why they even bother doing the first test if it can give false positives, but at least he's negative.

Asher's nose swab came back negative today so even though he is dripping, he can go to transplant. He got his first dose of Palifermin around 3pm at clinic and will have a dose Thursday and Friday at HOME. YEAH! Home health will come out and give it and we just have to pay a $15 copay! WOOHOO!

Next is to enjoy our time at home and admit Asher at 2pm Sunday!

The schedule is:
3/4-Admit to hospital 2pm, start IV fluids and other IV meds
that need to start before chemo
3/5-Start Chemo:
Carboplatin on 3/5, 3/6, and 3/7, collecting urine for 12 hours after with condom catheter each time the carboplatin is done
Thiotepa and Etoposide on 3/8, 3/9, and 3/10.
Rest Days on 3/11 and 3/12.
3/13-Transplant Day - Asher will receive his stem cells collected back in August 2006! The transplant coordinator said the 6.2x10^8 cells were divided and frozen into 4 bags and Asher will receive all of them, one bag at a time.

Because Carboplatin effects kidneys, Asher's kidneys will be checked and Carboplatin amounts modified as needed.

Because Thiotepa excreets through skin and causes a skin burn (like sun burn) Asher has to have a bath every 6 hours, daily gauze dressing changes over his broviac, and most likely I can't be with Asher until 36 hours after the last dose, just to be as safe as possible during my pregnancy (at least the doctor recommended I not be the sole care provider).

There's more but we will keep daily updates during the transplant! They figure Asher will be in the hospital anywhere between 14 days - 25 days post transplant depending on how it all goes. So, 3/27 - 4/7 (Easter is 4/8 so maybe we can make another goal to be home for another holiday, all together!).

So, after 9 months, 9 months since diagnosis, Asher goes to transplant, the final month of his treatment! Thank you God for all the blessings you have given us during the past 9 months!

If you pray, pray for no skin infections, no organ failures (esp. kidney), and complete acceptance of his stem cells on 3/13/07. Thank you for walking this journey with us by visiting our blog, praying for Asher, and signing our guestbook!!

Asher's dentist appointment went fine today. They didn't do much other than xray and look around in his mouth and at his teeth. No cavities, so he's fine there. He got a couple of prizes....an eyeball that rolls down the wall (like a wall-crawler if you know what those are) and a plastic set of teeth. He was proud showing me when he got home.

Sounds like Asher will not be allowed to go to transplant with his current snotty nose / cold situation, which makes sense, but we'll know more tomorrow. They are going to swab him tomorrow - guess they swab all kids before they go to transplant - he'll hate that. If we're delayed, most likely 7 days, so admit 3/11 instead of 3/4.

Alexa got Asher's cold Sunday night and hasn't been eating much at all and has a hard time breathing. Aubree is still having really crappy diapers and teething and being fussy about bottles (whether they are formula or orange (artificial fruit) pedialite) and food. BRAT (bananas rice applesauce and toast) diet is great if your child eats that stuff, Aubree isn't wanting to. I was pretty worried about her today and if tomorrow isn't better she's off to a doctor....such a bad time for our family to be sick

I guess the delay would give me an extra 6 days to fill out all the neurodevelopment forms/paperwork/questions. Just surprises me I got this so late and got so little time to do any of it.

Scott took Asher to the hospital at 6:45am today for his tests today. He is having a GFR test (which is many hours with draws from his line at various intervals). He is having an echocardiogram and more Neurodevelopmental Tests as well.

Day 21 Chemo Round 5

It was a full day today.

Asher and I were gone from 7:30am - 4pm.

He had LOTS of blood drawn first at clinic andv then the oncologist came in and chatted with us and checked out Asher (best he could, Asher wanted nothing to do with an exam today, all he wanted to do was go to the hearing test - he had been excited since I told him about it yesterday, going to bed saying he was going to listen to the birdies and froggies). The oncologist suggested that Asher might have had rotovirus which then passed on to the girls as quickly as it did, and probably why I never got it (although Scott got one part of the virus, so it seemed, as he and Asher both had symptoms when they got home last Saturday).

He said Asher's MRI came back clear, no tumors visible in MRI!

He said his counts are super! Going from memory as I didn't get a print out:
Platelets 185
Hemoglobin 11.6
WBC 3.6

So, as far as he is concerned Asher looks great!

Then we went to the hearing test. Asher can hear more this time than last time, although I didn't get a printout here either, so going from what the gal said, "We'll keep tracking it to see." So maybe he's back to only being minus high frequency hearing, but I'm not positive on this, and how the tests work and how hearing is affected by chemo and daily stuff is really quite interesting.

Then we met with a doctor that did Neurodevelopmental Tests with Asher....I wasn't allowed in so I have no idea what she did! I wasn't even allowed to watch. VERY BUMMED about that! I guess the doctor played games and did puzzles and what-not with Asher. He didn't have much attention span for this, needing a break 1 hour after starting and stopping all together after 1 1/2 hours. He has to go back and do more on Monday. It is required in the protocol, Head Start III, that we track the results from these kinds of tests, that is why he is doing it. I have a BUNCH of paperwork to fill out on what Asher can or can not do, think, say, feel, whatever, that I have to turn in before he goes to transplant. I did most of it while waiting for Asher.

Then I was trying to get Asher to drink this 20oz (sport drink size bottle) of BLUE contrast for his CT scan. I kept treatening him to either drink it or he'd have to have a NG tube. That's fun. Part of being a mom and taking Asher to hospital tests....I hate threatening him but it WAS honest. He either had to drink it or we'd have to do a NG tube and then put it down the tube into his tummy.

When I first picked up the bottle of stuff, I told the gal at the desk there was NO WAY Asher would drink even half of that bottle. She said to get him to drink what we could. So, at check-in, around 12:45, a radiologist gal came out to talk to me and I said Asher MAYBE drank 2oz so far (after I found a straw to put in the bottle, that kept falling down into the bottle) and I was trying to get him to drink more from a sippy cup now. She said, "You're going to be here a long time then." Nice. Then we discussed a little of why Asher was getting a CT scan, and about him drinking 20oz of fluid. She said she has never had a problem with any cancer child, 4 years old or not, drinking 20oz of the stuff. I was shocked. Really, could my son be the only one who wouldn't drink that much in an hour, let alone half a day, only 2 1/2 weeks post chemo treatment and only 5 days post vomitting every day. Arg. THEN, this was the kicker, she told me he had to have the scan because they were looking for tumors in his colon before going to transplant. I said, he had a tumor in his brain. She said, yes, but his cancer is a spreading cancer. I said, sure to his spine and it is clear via MRI two days ago. Then I tried to tell her that he had inflammation back in September after infection in his head, etc etc....mind you, all out in the waiting area for other patients and parents to hear. At that point I just felt way to frustrated and stopped talking. There was no use in talking with someone that didn't even know Asher's case.

She said to let them know when Asher had drank 1/2 of the bottle and if I needed HELP to have the gal at the desk call for her. She went away then and I took Asher in the umbrella stroller for a walk. Went back to clinic, talked to the social worker to vent....also trying to get a hold of the transplant coordinator to confirm they were just getting a baseline to make sure had no inflammation of his gall bladder, intestines, bladder, or pancreas, and to have her tell radiology that. So....an hour later....Asher had all what he was going to drink (threatening me that he was going to throw up)....and it was probably 9-10oz of this blue crap (which, by the way, stunk, so unless it was in the sippy cup, he gagged every time he had to take the straw and try to drink), and he fell asleep laying on the chair next to me with his head on my thigh.

So, finally, Asher went into the scan at 2:30pm. I had to wake him up and when I laid him on the table he started crying, "I don't want a tube!" I told him he drank enough blue stuff and did great and didn't need a tube....then he was okay....he laid really still on the CT scan table thingy and I had to leave the room since I'm pregnant. It went okay, in the end. And, the transplant coordinator had called the radiology lady that had told me Asher could have a tumor in his intestines and gave her the REAL reason (the same one I told her) of why Asher was getting the CT scan and she then told me, "You shouldn't worry about any tumor." I thought, "I wasn't worried. I just don't think you should tell parents about their child's condition, you're not a doctor." I could tell she liked debate and I wasn't in the mood, so I kept my thoughts to myself.

Sometimes it is all a very frustrating process, and I so can't wait till it is over, as I am sure Asher is.

Monday will be another full day at the hospital, till then we'll have a good weekend.

Day 19 Chemo Round 5

I told Asher yesterday that I would be getting him up at 8am to eat breakfast because he had to go in to get a picture of his brain. So this morning at 7:50am, he was sound asleep, and I woke him up and he crabbed....I told him it was almost 8am and I made him pancakes and he had to come eat. Then he was happy and I carried him down where he gobbled up 2 pancakes. He did well with all the deadlines of eating and drinking today. He only had one meltdown, that only lasted about 1 minute, which was after I reminded him about going to get a picture of his brain. He said he didn't want a picture. Then I talked to him about what he wanted to bring to play with. He said he wanted to pick out 4 toys to bring with him and I helped him get ready to go, loaded him in the SUV, and up drove daddy to take him to his appointment. He fell asleep as soon as Daddy drove off and then I got a call that the anesthesiologist was an hour late so I called Scott on his cell and told him to take his time getting to the hospital and check in an hour late.

Asher is just so special to me, as I see how he has learned to cope with going to these appointments the last 9 months. And, as much as it hurts me to send him off to the appointments and treatments, I sure as heck can handle it okay if he does!

Alexa started complaining her tummy hurt around 5pm (and running a 101 fever) and started throwing up in bed at 10:30pm. Aubree still can't keep a full days worth of food down. So, it has been fun times around here. I just want to feel better, get better, myself, so I can go to these appointments with Asher and feel like I know what is going on. I also want Asher's nose to stop running so I can feel like he's 100% for transplant.

Today was day 1 of tests/scans needed to go to transplant. He had an EKG, MRI, chest xray (front and back, to check his lungs) and spinal tap. Will know the results tomorrow, at least of the MRI. Asher came home from the hospital tonight (at 9:45pm) eating McDonald's and being pretty quiet. He just wanted to watch TV before bed. He said his picture went okay.

Got to clinic at 10am and had Asher's counts checked. WBC is low but the oncologist said it is okay to start chemo as it will take a week for this week's chemo to take affect on his WBC.

Asher got his room around 2pm, non-window side right across from the nurses' station. At least they found us a couch as the room next to us had someone check out after we arrived.

Asher had a hearing test around 4pm. He participated wonderfully, as always. The gals loved working with him. After it was over the one gal wanted to go over it with me. This was the first time and she said he will need a hearing aide in his left ear when he is all done with treatment. "For now, just talk into his right ear," she said. I swallowed what could have been lots of tears and smiled and said, "OK." We expected this and at this point I'm just thankful he isn't completely deaf in the left ear.

Then, since GFR tests are only given Tuesday - Thursday (I'm just now told this) Asher just got a Foley Catheter(6:30pm). His urine will be collected for 24 hours and then he can immediately start chemo, so probably around 7pm tomorrow night, although, that's change of shift, so maybe he won't get to start till 8 or 9pm. I'm going to push for the day nurse to give it before she/he goes home though. Don't like having chemo so late in the day.

Now...the oncologist came in to discuss the hearing test results (unfortunately, just as Asher was getting versed and we were headed to the treatment room). He said, "I'm shocked. We didn't expect this as his tumor was not specifically on one side of the brain. I just got off the phone with Dr. Finlay (the man who I have talked about before, the one that has developed the Head Start protocol Asher is on)...." Here is the summary of the short conversation: Asher will NOT be getting Cisplatin this round because he has more than 50% hearing loss in his left ear. Cisplatin is extremely ototoxic, which means on a scale from 1-10 as far as affecting hearing loss, Cisplatin is a 10.

I'll add more if I can remember what else was said....Asher's dinner is here, gotta go.

COUNTS:
WBC 2.8
RBC 3.64
Hemoglobin 11.9
Platelets 185
Neutrophils 65
Lymphocytes 7
Band Neutrophil 2
ANC 1876