Posted by Steph in
2 Years Post-Treatment, Eyes, Feelings, Scans, on Tuesday, June 2. 2009 at
Not sure when it started, but a friend noticed in a photo posted on facebook and called us on 5/22. I saw it, too. But yesterday is when I really saw it and my emotions/body went into a major panic for several hours....
I slept okay last night.
Other than being shakey and running to the bathroom, I'm not doing too terribly today. I convinced myself (well, okay, I didn't, but I calmed down a bit) that since he's not throwing up in the morning and not saying his head hurts, that this is JUST an eye problem, not something in his brain....NOT cancer....
I moved up Asher's well-checkup from Monday June 8th to Thursday June 4th so I can have his pediatrician take a look at him. I also found a pediatric eye doctor that can see him this Friday, June 5th. And, I just got off the phone with oncology....they have moved up his 7/17 routine MRI to next week, June 12th. And, they aren't doing just brain, they will include the spine.
So, I'm a bit spinning in my mind, in my spirit....
I had gotten to the point where I never thought I was going to feel panic....
But, really, I think he is okay, and he just needs glasses....
And, now I just got off the phone, again, and they moved his MRI up even further....it is tomorrow, 10am....
Now if I could be as 'excited' as Asher is....I just told him that his MRI is tomorrow and he said, "Is that the one with the mask?" "Yes, it is." "Yes! I like that one. Tell them to put the IV in my foot, because I know I have to have that. And don't forget the stroller, because you can't carry me."
Well, I'm anxious, anxious to dismiss the idea that cancer is back....
Posted by Steph in
2 Years Post-Treatment, Clinic Visits, Counts, Feelings, Scans, on Thursday, March 26. 2009 at
All clear, but still, I feel like I have been punched in the gut. In a good way....I guess....maybe....sounds weird I suppose.
Asher fell asleep only 10 minutes away from the hospital today, at 3:15pm. He was exhausted. When I woke him, though, he was in a descent mood. On the way out of the elevator at the parking garage, before clinic, Asher said, "Mom, I'm dizzy. I want another MRI today." I kind of wondered if he knew what he was talking about. Like if he knew WHY he gets MRIs. I've had a difficult time explaining to him, in the past. I've never really wanted to explain everything to him, because I didn't want to scare him. He knows little. He remembers little. He seems to not have questions. I've told him he has MRIs to make sure there are no more tumors, bad spots, in his head to give him headaches. Anyway, I actually think he might have felt a little dizzy because he was very nervous about clinic.
Dr. Etzl actually met with us today, instead of his partner. Been awhile since Dr. Etzl has seen Asher. Although Asher knows him and he has a wonderful way with Asher, Asher still refused to talk to him or barely look at him. He wouldn't walk for him, or jump for him, or squeeze his fingers, or push on his hands with his feet, or anything. He was terrified. Nervous. Dr. Etzl even said to Asher, while he was about to listen to his heart and lungs, "Are you as nervous as you look?" He was. He was rigid, looking down. I feel so bad when I see Asher feel the way he feels when he goes to clinic. Everyone is so nice to him. He never gets poked. He never gets bad news. But, it is like what he went through, 2-3 years ago, changed him forever....
When school started, a kid at school asked him about his scar and he said, "The doctors did something naughty to my head." Well, every clinic appointment, I tell him, "These doctors didn't cause your tumor or your head owie. They fixed it. They made you healthy. I am so grateful to them. I would be grateful to you if you would answer their silly questions." I told him this today, as well. I was hopeful, but it didn't change the way he was at clinic today.
Dr. Etzl showed me all the blood test results....everything normal, including kidney function, liver function, bone marrow function, and thyroid function. I don't have a copy, otherwise I would put the results here. I am going to try to get a copy, as I forgot.
Dr. Etzl reminded me what Asher's treatment goal was. To cure him, rid the body of Medulloblastoma, without radiation. He told me that there is still no evidence (proof?) that the treatment Asher had cures Medulloblastoma. He said, "Even when radiation is done right at the cerebellum, AND whole brain radiation, there is still only a 75% cure rate."
I'm not a numbers person. I never have been. I've seen this thing called Medulloblastoma blast into the lives of many kids, and it treats each one differently. Statistics? Why do they matter?
I guess I'm a scientist, to a degree. I was a engineer, a problem solver. I get why there are clinical trials, and statistics. There's a need to know what the BEST treatment is. What the BEST outcome can be, as far as living life. As far as the many children they must cure of this nasty beast. That's why we gave Asher that poison, because we wanted our child to have the best chance of beating cancer. The scar on the back of his head is a constant reminder, to me, every morning, as I brush Asher's hair while he eats his breakfast (helping it to dry faster).
But, sometimes I feel Dr. Etzl is waiting, and warning. Waiting for the cancer to come back, and warning me it will.
Or, he is simply telling me something I already know....Asher is doing so well, beyond their expectations, and I should feel blessed. (And, I do. How do I even put it into words how I feel about Asher's state of health right now?)
I've always respected the straightforward, honest, direct surgeons and doctors. I'm straightforward, honest, and direct. So, I need that in return. Especially as an engineer.
In case I haven't said it before, I don't believe it will be back. And, I'm saying this as Asher's mom, not as an engineer. Screw science.
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, Feelings, on Thursday, September 25. 2008 at
That has been hard to admit to anyone.
When I ( try to ) forget the past, it is easier. Coping. Life.
Like Asher said when I asked him if he ever tells anyone he had cancer, "It's a secret."
I just wanted him to go through life like he didn't have to explain anything, he didn't have to have excuses for anything, that he was just "normal," like any other boy.
I just got off the phone with the school principal. I was holding my breath until she said, "Nothing is wrong at the school."
Asher's teacher has talked to her about Asher. Her main concern right now: Gross Motor Skills (bigger movements — such as running and jumping — that use the large muscles in the arms, legs, torso, and feet — whole body movement).
The principal wanted to know if he was in therapies right now. I gave her the run down of the evaluations we had done and that they weren't all back yet. I did tell her that I just got back the PT one and the conclusion is that he is within normal limits and doesn't need therapy.
Interestingly enough, clinic was yesterday and I was asked, "Has his school called yet?" I said no. So, I guess a day later and things have changed.
Now I have to face reality again. I need to get outta the fog and stop pretending cancer didn't happen. When I do this, sometimes it is hard to stop crying. Right now the tears are just flowing...and flowing...
Makes me think about how Asher probably feels when he is at clinic and people talk about him, look at him, make a fuss....
We don't want to talk about it.
But, we have to.
I have to start the process to get the IEP. I'll be working on a letter to the principal this week.
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, Feelings, on Sunday, August 17. 2008 at
A couple of mornings were a challenge to get Asher ready to go to school. One morning, he was in such a good mood, but then after breakfast he coughed so hard he threw up. His cold seemed to get worse before it got better. Anyway, after an hour to watch him, he seemed fine and was getting a bit bored and I asked him if he wanted to go to school, so when he said yes, I took him and signed him in and got him a late pass.
There is a boy in his class that he seems to be getting into trouble with. Two days in a row. I'm not sure what, maybe talking, the first day. He told me he got a timeout because he was doing something naughty with D. The second day, I actually got a call from the teacher after school, right as I was headed out the door to get Asher from the bus stop. It didn't seem major, but Asher is a sensitive child. Apparently he went out to the bathroom with his friend from class and they took too long to come back and the teacher went looking for them. There is a drinking fountain outside the bathroom, which I think is where she found them. She said she saw the other boy spitting water at Asher. She did say she didn't think Asher was spitting water; she didn't see him. She said, "He was very upset." But, I don't really think he was upset about the boy spitting water at him. He told me later that night, right before bed, "My teacher yelled at me. I cried and cried. She broke my heart." She had told me she just wanted to make sure they understood to go to the bathroom and come back to class right away. So, that's what I explained to Asher, too. I can imagine, that it would be easy to get distracted, to go from class to the bathroom, when it is outside. I grew up where the entire school was enclosed under one roof. Here, in AZ, where it is so warm, year round, there are no hallways. They walk outside each time they transition to different classrooms, or need to go to the bathroom.
I was really proud of him, by Friday I was able to drop him at the bus stop, from the van, and he stood waiting with the other two kids. I waved from the van when he was on the bus looking out the window. Friday afternoon they gave us an updated bus schedule and I saw there is actually a bus stop a bit closer to our house, so I think I'll have Asher use that one because in 2 months when the temps are cooled off enough to walk, we can walk to that stop then. It is also on a less major street in our development with less traffic (I think).
Saturday Asher was in such a great mood, until around 4pm when he started holding his tummy. About 30 minutes later he started vomiting, and he hasn't stopped. He did tell me last night that a boy threw up in class, "Not me," he said, "Just one boy." I was happy (is that the right word) when I took his temp at 9pm and he had a fever of 102. A fever is a good thing; he's sick. There isn't something wrong in his head. His cancer is not back. He's just sick. He has also been sleeping since around 8pm last night. When I saw him a couple of hours ago in bed, after he threw up (bile), he said, "Mom, leave me alone when I'm sick."
The first week I had such a horrible time, emotionally. Just felt so out of sorts! Actually, this past week too. But, the first week I realized something. I do a lot of self analyzing. I think a lot. I try to figure out why I feel a certain way or why I react a certain way. I'm my own worst critic in that way. Anyway, so the first week I wanted to understand why I felt so horrible. Was this just a control issue. Asher is in kindergarten, in someone else's care, and I have no control. No. After 3 days of wondering and thinking and analyzing, I figured it out, with the help of so many flooded memories coming back to me. As I was sitting at home, Asher at school, and feeling horrible, I realized having Asher at school, and not at home, reminded me of a time when Asher was in the hospital and I would be at home, alone, with the girls. With the exception of Andrew, toddling around, walking and smiling and laughing, it felt so much like 2 year ago when Asher was in the hospital. The day of his diagnosis invaded my thoughts part of Wednesday, that first week of school. It felt like I was re-living it. It was powerful, it was horrible. When I finally figured out how I felt and why, I had a solution. Every time I started to feel bad, I told myself, "He's not sick. He's just at school. You'll go pick him up at the bus stop at x time. He'll be home, soon." After two days of doing that, I started to feel so much better. I still feel weird, as far as him being in school and me not knowing what he's doing, etc. But, I don't feel horrible, like I'm having a panic attack. The bad memories have stayed away and I'm functioning again. I can not only take care of the kids, I can clean up the kitchen and do other daily tasks. Sounds silly, but it was pretty bad that first week.
This morning, while I sat next to him in bed, as he threw up, I had some bad feelings....about watching him throw up....but, then I told myself, he's going to be better in a day and not throwing up anymore. What a good thing that will be. I told Asher too, you'll feel better in a day or so and then you can eat and drink and play again.
Since Asher still has a fever, he won't be going to school tomorrow. I do hope he's not still throwing up tomorrow, but he has to be fever free for 24 hours before going back to school, so.....I'll have a full household, and possibly more little kids vomiting with fevers and sleeping....maybe I could be spared so that I can take care of the kids and Scott can go to work.
I'm also praying for a more healthy rest of August for Asher.
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, Feelings, Tests, on Wednesday, July 23. 2008 at
He is very 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.
Posted by Steph in
Feelings, Home after Treatment, on Tuesday, February 26. 2008 at
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.
Posted by Steph in
Chemotherapy, Feelings, on Friday, July 13. 2007 at
I was looking back in the blog, and early in this journey, thoughts and feelings were more difficult to record, but I realize, even without the journal, I can't forget, although I wish I could, for the most part.
I remember our first hospital room, off in the corner, thought it wasn't a bad room. It was by the stairway so sometimes the door slammed a lot, mostly in the early morning hours. It was always a corner that people would go to talk on their cell phones, to get a little privacy, I guess. The room would have two patients, one by the door and one by the window, with a curtain separating them.
I remember I didn't like being by the door and couldn't wait for us to move to the window side, and at that time, it was only because I got little to no privacy when I needed to pump breastmilk for Aubree when I was there.
I remember the first family that we roomed with. Their little girl, a baby in fact, had eye surgery because she had cancer of/in her eye. In fact, it is Grace's carepage that reminded me of today. I got an email that they updated their journal. She has been cancer free since her surgery. It would be the first of many roommates that I barely said hello to. I haven't ever been too big on socializing, and this wouldn't change too soon.
I remember after Grace went home, we got our second roommate, after Scott moved our stuff to the window side. The little boy was a bit younger than Asher and also had brain cancer.
I remember being tired, but finding I couldn't nap at all with the people and the noise. This wouldn't change too soon, either, unfortunately.
I remember the first time Asher threw up. He didn't look so well in the playroom and we began our walk back to the room from the playroom and I was carrying him. That's when he threw up, down the back of my shirt. That was my first lesson in two things (1) bring extra clothes to the hospital even if I'm not staying overnight and (2) always bring a large plastic vomit bin when walking in the halls or going to the playroom.
I remember the sick look on Asher's face, in his eyes, in his expression.
I remember the fear on Alexa's face when she saw Asher throw up in his bed for the first time. She immediately wanted to go home and that made me sooooo sad!
I remember the joy it brought to Asher to see the girls and I come to play with him and to see him! He loved to hold Aubree and help take care of her. He's such a good big brother!
I remember being so scared, so angry, so unsure how I was going to watch Asher go through chemo and how I was going to help him feel better or pass the time.
It was one year ago today...so many memories...so many thoughts and feelings...and I pretty much can't really come to say anything wise, except, if it weren't for chemo, we wouldn't be where we are today!
Posted by Steph in
Feelings, Home after Treatment, on Thursday, June 28. 2007 at
Not "...for making pancakes for dinner (instead of chicken and corn)."
Not "...for giving me Kool-Aide for lunch (instead of milk)."
Not "...for reading to me before bed."
But, "I love you for taking my catheter out."
That brought a lot of tears to my eyes. Lots of things are doing that lately, but this one hits the heart deep. If only it were that easy. If only I could have stopped him from needing that catheter in the first place....
Oh, and I forgot, Asher watched me put his pole (with backpack and pump) outside the front door this morning. He asked if the nurse was going to pick it up and I told him yes, and he didn't need it anymore. He was pretty happy about that. Home Health came and got it a couple of hours later. At next clinic, 7/11, we'll be taking some left over supplies that we have and they will be given to families that do not have insurance and need them. It will be nice to have some space back; seriously, some of these supplies seemed to have multiplied and take up 1/2 the under counter of the kids' bathroom.
Posted by Steph in
Feelings, Home after Treatment, Scans, on Thursday, June 21. 2007 at
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. 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!)
Posted by Steph in
Feelings, Home after Treatment, on Saturday, May 26. 2007 at
One year ago today our lives changed. We got the very unexpected news that our oldest child, our 3-year-old, had a BRAIN TUMOR. There was this thing growing in the back of his brain, a mass. They expected it was CANCER.
"No no NO NO, this can't be happening!" That's seriously all I thought and all I remember thinking and still today, all I think about sometimes. The moment I got to the hospital that night, finally around 8pm, and saw my little guy sitting in a chair with a smile on his face, but saying he wanted to go home, my heart sank and grew at the same time. I looked at him differently from that moment on. This little boy, my first baby, that I named "happy & blessed," my Asher, he was about to undergo things that made me sick inside just thinking about.
Today, 57 days post-treatment, when I look at Asher, I feel so proud of him. All he has done to overcome the pain of this past year....most people say to Scott and me that they can't believe it has been a year, but it has been the longest year of my life. It was just so slow. And, in many ways, it doesn't bother me. I had a lot to learn and I knew they were days I had with my son and I wanted them to last FOREVER. So, while sitting in the pain of the moments, we found joy.
Sometimes, I understand now, why some people have emailed me about their child who is fighting this nasty monster called Medulloblastoma and have said, "No we don't keep an online journal." One person said they want to forget when the treatment is over. One person said that keeping the journal makes it more real. I'm feeling that lately. I want to forget. I want it to feel less real. Unfortunately, every time we go to clinic, it FEELS more REAL. The doctor asks questions and REMINDS you it CAN COME BACK. I have only been to 2 recent clinic appointments with Asher and I have gotten a bit depressed, more so, after leaving there. It was easier when I just sent Asher in with Scott. I didn't have to deal with it. People say I am strong, but I don't feel like it. The strong one is Asher. He is truly amazing. Amazing. I'm so glad he is my oldest child and that he copes well, and grows well, and thinks well, and learns well, and lives well. I'm just so proud of him and I feel blessed that he IS "happy and blessed!"
Posted by Steph in
Clinic Visits, Cord Blood, Counts, Family, Feelings, Home after Treatment, on Thursday, May 24. 2007 at
Asher went to clinic yesterday. He weighed 17.3kg, up from 17.0kg which was pretty consistent through April.
We are going to go with 750mL of fluids at night now, over 10-12 hours, down from 1000 bags (although we were stopping them early, he was probably still getting around 850mL). Then in about 2 weeks we'll go down to 500.
We are dropping the Prevacid since it is for tummy issues and I don't think Asher has any. Acyclovir goes for 6 months though, so got some time on that one yet. Still doing Bactrim Tuesdays and Wednesdays, and I think that is till Day +100 but I forgot to ask on that one.
I am going to call and schedule surgery for Asher to have his Broviac out for the week following his next MRI (6/21), so week of June 25th. They won't let me do it the same day as his MRI because they (not me) fear the MRI could show recurrence.... Just want to get that done before July hits as we're thinking Andrew could be born anytime in July. Also, sooner the better, to let Asher get back to his life, swimming included. He deserves to enjoy our pool this summer. He has always loved to swim since he was a baby. Today the pool is done (the reconstruction) and is being filled with water as I type this. He was so excited this morning and before the girls were awake he and I walked around the pool. He keeps talking about getting his catheter out so he can go in the pool. I told him it will be around the time Andrew is born that he will get to jump in the water! I think I will have tears then....it is like he has his '4-year-old life' back but then he has these tubes hanging out of him....I can't wait till they are out and not a constant reminder of this past year.
He is doing well. His fingernails are all healing and growing more normal now. His jumping is improving, as is his running. He may even need a haircut in a few weeks!
Counts 11:30am 5/23/07 Day +71:
wbc 4.3 (4-12)
rbc 3.69 (4-5.3)
hemoglobin 12.5 (11.5-14.5)
platelets 309 (140-450)
neutrophils 46 (25-50)
monocytes 13 (3-15)
ANC 1978 (doc says this fluctuates a lot at this point, so it dropped, but not to worry)
Next clinic appointment is June 6th.
Before clinic I had the kids at the pediatrician for the girls' well-checkups (3 years for Alexa and 1 year for Aubree). It was one year ago this week that we had Asher looked at by this pediatrician and I think she knew what the MRI would show before she even told us she was going to order an MRI. I think back, about how she handled that, and didn't freak us out....and how she called and checked on us a lot after we did know the results....
She was observing Asher quite a lot yesterday. I noticed her doing that and I said I was so amazed how Asher had come out of this past year with very little to no deficits. She said she is amazed at how well his mind is working (she used a different term, like brain-something), how balanced and coordinated he was, how much he had grown, and how good he looked. She said she couldn't believe it had been a year already but that she was sure it had just been an awful year and couldn't imagine really what it all had been like for us....there was hesitation in her speaking, and I could feel her thinking back to that week last year....she even said she remembered how he was last year and he is so different now.
I was really happy with how careful the kids' pediatrician is too. No one warned me or told me that the girls' vaccines need to be post-poned or anything like that. For instance, Alexa couldn't get her chicken pox vaccine because it is a live virus vaccine (if I said that right) and Asher could get quite sick, so she will get it at 4 years or 5 years old since it is a 3-5 years vaccine.
Every day this week it has been nothing but THERE....the memories, the pain....if I'm not playing with Asher or near him I feel the pain. When I'm with him I can celebrate his victory. I'm always rubbing his head...it is WEIRD to MISS his baldness. I kinda do. The bald head...there was something about it. It wasn't a sign of his illness or anything like what missing eyelashes meant to me....
So anyway....a flood of memories this week, of feelings, and of prayer. I found myself praying to God last night after thinking about what the transplant doctor said...."if Asher has a recurrence we will do radiation"...I know...I know...that has always hung over me. I'm so afraid of radiation and I ask God to what? NEVER let Asher's cancer come back? SURE! But really, I'm the realistic person here, and I just ask that IF it comes back, to keep it away till we can do radiation at an older age. I'm just so afraid of it.
There, got that outta me. We can just go on with life and act like there is NO CANCER in our life! So there, Cancer, go away! Let us have some peace and enjoy the upcoming new life in our family! I want to give birth to a baby and not feel like my world is going to fall apart.
I saw a little boy at clinic today with his mom. I almost didn't recognize him. He had leukemia, at 2, and he looks so big now. Last we saw him was at the end of September when he was DONE with treatment but got a line infection (in his catheter). She remembered how sick Asher was back then. Anyway, it is good to see the kids post-treatment. There's something about it. Hope. Faith. Something. He's the same adorable boy I remember, just taller, and with hair! The mom said to me, "OH! You're expecting!" Yeah, you can't miss it now. I have a good size 7 month belly. She said, "What, you thought you didn't get to enjoy the last one so you'll have another one?" I said, "I guess that is what God was thinking!"
And....before I forget....I talked to the transplant doctor about Andrew's cord blood....it was a GOOD conversation, one where I didn't feel horrible after having it. I had done a bunch of reading and anyway, it was just GOOD to have the doctor be honest with me and not just say, "Of course you should bank it!" She actually didn't even say that, and I told her it surprised me! Both my OB and the kids' pediatrician said that, "Yes, you should bank it!" I'm still trying to decide what is 'right' and hoping God gives me a sign, and soon. Some programs require registration by 35 weeks and I'm 30 weeks tomorrow.
Posted by Steph in
Family, Feelings, on Wednesday, May 9. 2007 at
On another family note, Asher is just so excited about the photo of his baby brother that I got taken (via 3D ultrasound) this past Saturday (5/5). Asher just loves babies. I'll never forget all the times that bringing Aubree to the hospital during Asher's first three chemo rounds brought joy to Asher. Lately, Aubree really reacts to Asher. In play, she will even lean back and lay on him and Asher will look down at her and say, "Oh, Aubree, I love you." Back to the other baby of the family...Asher talks to Andrew (his baby brother) a lot and even kisses him (my belly I mean) before he goes to sleep at night. Asher is also the only other person to feel Andrew kick, besides me. He loves to feel him. He says, "Andrew is growing bigger and bigger," and "Andrew is kicking. Boom boom." I often think about how Scott and I are a bit stressed out about having another baby, if only for the reason that four kids under five is A LOT of work, but Asher puts everything into perspective...LOVE.
I think I forgot Mother's Day is coming up. I heard on the news tonight, "It will be hot for mother's day." I had to look it up on the Internet. Yup, that's this weekend. And yup, it will reach around 105 degrees (and yup, my pool is STILL under reconstruction). It is one of those times in my life that makes me stop and look at myself and really ask myself, "Am I the best mom I can be?" Lately I struggle. I know I am a far better mother than daughter, wife, sister, or friend right now. I still just don't have it all together and I'm scared I won't be good enough for Andrew. I wonder if this is normal, to question like this. I still remind myself that God sent Andrew for a reason. Heck, He even warned me in a dream. I don't think I mentioned that in this blog before, but after Aubree was born, and after Asher was diagnosed with cancer, I had a dream that I would have another baby. He was named Andrew in my dream, thus the reason he is named Andrew now. Anyway, long story....after this dream I cried a few times while thinking about it....I told Scott (and God), NO, I didn't want to bring another baby into the family. Scared what effects Asher's cancer would have on another sibling, I really believed I would not have another baby....and like I said, long story. Won't share it all here. I believe I get messages in dreams like this and when they come true sometimes I think it is freaky, although, I am grateful for them. I was 'warned' prior to my first miscarriage. It comforted me then, and with Andrew, I don't think I would have coped with getting pregnant so soon when I didn't 'feel' ready if it weren't for that dream.
Back to being a mother....
I was reading a book to the kids prior to nap. Aubree lost interest first, so got put into her crib. Alexa kept talking while I was reading, so she got put into her (new) daybed. Asher was totally into listening. I kept reading (it was a THICK book) and he suddenly said, "I love you, Mom." Asher will say this, probably one time a day, if I am doing something with him that he likes. Alexa, too, but she says, "I like you Mom."
It reminds me of a cute story, in which I don't know all of it, but my sister, Tracy, when we were kids, starting making/giving me cards for birthdays or whatever and she started signing them, "Like, Tracy," instead of the 'normal' "Love, Tracy."
I know I'm tired. I know I feel like I am failing in so many parts of my life. That's hard. Keeping up with what I think I should do, but feeling like I just can't do it. I'm rambling....off to get the kids baths and reading and into bed....
Posted by Steph in
Feelings, on Thursday, April 26. 2007 at
Then I remembered a conversation between a mom and a resident doctor, way back when Asher started his chemo, in round 1. The mom wanted an MRI. The doctor asked, "What would it change? It won't change the course of treatment." The mom said, "I just want to know what's happening."
So, I reminded myself that Asher's head had to heal before we did more treatment anyway, so just let it go. But he did have an MRI at the end of November, finally, and I remember crying and crying in the waiting room....
There are things, external, naked to the eye, that you can see, and understand. That is what I cling to every day now. I constantly ask Asher if he is okay. I noticed I do that. ANY time he falls, I wonder if he just lost his balance. Last night I found myself staring into his eyes, as he was faced looking into the bathroom mirror. I was looking to see if his eyes were straight.
But, with Asher's MRI 6 days away, I honestly don't expect anything but clear results. I think I believe it is just too soon to worry.
I've thought a lot about worry. I grew up worrying. I wondered all the time, while I was growing up, if "God was going to take my mom away too." I wondered where I would live and what would happen if my mom died.
I hated growing up with that worry.
I think because I grew up like that, I have learned to focus my worry into something else now.
Faith. (I say "faith" as matter of fact. I know, no matter what happens to my children in this life, on Earth, that in the end, God will ALWAYS take care of them. I told myself that after my first miscarriage and I was carried through my second miscarriage with that thinking.)
Living. (If I am consumed with worry, I can not live. I have learned that happiness is ALL in how I allow myself to be. When Asher was sick with cancer, at least I was with him. We were living, and what a blessing it was and is!)
And, I do worry, but I try to turn my worry into helping me teach my children to be as safe as they can. I worry they could get hit by a car, so I try to teach them to always look for cars before moving in a parking lot or street. I worry they might get kidnapped while I'm out shopping, so I try to teach them to stay close to mom and not stray. I tell them, "Stay by me, I don't want anyone to take you because I love you."
It hit me one day, months ago, that I had turned my worry into a good thing when Asher said to me, "Mom, don't talk with food in your mouth because you might choke and I love you." I can still smile and laugh when I think back to that day. He heard my teaching (even though you wouldn't know it during dinner time when he's goofing off at the table with Lexa).
I do constantly, constantly think, "What if?" It made me a good problem solver, a good engineer, and I think it makes me a good mom. It means more weighs on my heart, but if I could protect my children from all the hurt in the world, I would.
As for Asher's cancer.... I ask God to handle that. Let Him take on that worry. I don't need that worry. As we approach the first birthday of our youngest, the one year anniversary of Asher's diagnosis, and then the birth of our 4th child, I just want to be free. Free to be happy....I give myself persmission to just BE HAPPY, and tell myself I am a good mother and do the best I can.
Ecclesiastes Chapter 3:
There is an appointed time for everything, and a time for every affair under the heavens.
A time to be born, and a time to die; a time to plant, and a time to uproot the plant.
A time to kill, and a time to heal; a time to tear down, and a time to build.
A time to weep, and a time to laugh; a time to mourn, and a time to dance.
A time to scatter stones, and a time to gather them; a time to embrace, and a time to be far from embraces.
A time to seek, and a time to lose; a time to keep, and a time to cast away.
A time to rend, and a time to sew; a time to be silent, and a time to speak.
A time to love, and a time to hate; a time of war, and a time of peace.
What advantage has the worker from his toil? I have considered the task which God has appointed for men to be busied about. He has made everything appropriate to its time, and has put the timeless into their hearts, without men's ever discovering, from beginning to end, the work which God has done. I recognized that there is nothing better than to be glad and to do well during life. For every man, moreover, to eat and drink and enjoy the fruit of all his labor is a gift of God. I recognized that whatever God does will endure forever; there is no adding to it, or taking from it. Thus has God done that he may be revered. What now is has already been; what is to be, already is; and God restores what would otherwise be displaced. And still under the sun in the judgment place I saw wickedness, and in the seat of justice, iniquity. And I said to myself, both the just and the wicked God will judge, since there is a time for every affair and on every work a judgment. I said to myself: As for the children of men, it is God's way of testing them and of showing that they are in themselves like beasts. For the lot of man and of beast is one lot; the one dies as well as the other. Both have the same life-breath, and man has no advantage over the beast; but all is vanity. Both go to the same place; both were made from the dust, and to the dust they both return. Who knows if the life-breath of the children of men goes upward and the life-breath of beasts goes earthward? And I saw that there is nothing better for a man than to rejoice in his work; for this is his lot. Who will let him see what is to come after him?
Posted by Steph in
Feelings, Home after Treatment, on Friday, April 20. 2007 at
I feel as if this was/is my journey, more than Asher's, at least right now. Obviously, I have a piece of it, Scott has a piece of it, Asher's sisters have a piece of it, and Asher has a life sentence with it.
Right now I feel I am in search of support, understanding, reasoning, something, not exactly sure what.
I often go from one blog or caringbridge site to another, all written by parents that have or had children with brain tumors. This is especially difficult because I will be encouraged one moment by a child that has survived for years post treatment, but I will also end up on a blog where a child has passed or is currently labeled as "terminal." I want to reach out. To say I am "thinking of them" or "praying for their child" and I usually do, but I feel helpless. Even children that have been prayed for, die.
So, sometimes I want to read other "cancer" weblogs which are not brain tumor related. Many cancers are similar as far as how treatment is administered, what side-effects are short or which ones are forever, etc. I often search for someting on Google and it is amazing where it leads me.
Today my search was "cancer blog."
It led me to this blog: Life with Cancer, by Erin.
For some reason I want to read more sites like this. I want to understand thinking from a person that HAS or HAD cancer. I'm just a mom of a kid who has/had cancer, but cancer isn't in me. What Asher thinks (or might think someday) is important to me. I like Erin's honesty, straightforward thoughts, and her sharing it online!
I was drawn to these posts:
Do you believe in the power of positive thinking?"
Am I a survivor?"
What NOT to say to someone who has cancer
They all touched me....I could respond to each of these in my own blog entries....maybe I will some day.
Then, from Erin's blog, I came across two websites: I'm Too Young For This & Steps for Living. They are both started or run by Matthew Zachary, 11-year-survivor, Pediatric Brain Cancer, I think.
This is from Steps for Living:
It takes more than 'being cured' to survive cancer. (What does that mean anyway?) It takes resilience, creativity, audacity, and irreverence because cancer is changing. What was once simply a death sentence is slowly becoming, for many, a life sentence.
Our value is that your life is a work of art, unique, expressive and capable of taking you places that you could never imagine. Cancer doesn't change that. It's gift is a blank canvas—and when faced with the realities of cancer, the art of survivorship is all about how you choose to get busy living.
The helped me tonight. Not entirely sure why, but I saw it as a sign from God to just let go of the JUNK I feel in my heart and "get busy living." I think we're doing that pretty well. We are still being kept from doing fun things with Asher (till at least Day +100), such as going to the ZOO, but we're making the most of things right now. He's running, and smiling, and fighting with his sister, and being 4....that's what matters.
And back to my post the other day about people staring at Asher....and my response to an email from a wonderful online friend....
I think what it is, is that I know people's hearts hurt when they look at Asher. I think this because I think I do that if I see a "sick" child. I get sad. Back when Asher had his head wrap stuff on to hold on his head wound bandages, and I'd be at the store, I always had at least one person who would say, "What happened?" or "What kind of accident did he have?" And I would always say, "No accident, it was an infection during his cancer treatment." I just want people to look at my son because he is cute or being polite or friendly or smart or something like that. I want people to feel happy when they see Asher, like I do. I feel so happy when I see him. I don't want people to feel sad.
Today Asher took some balloons (balloons that we blew up, at home, with one of those Target-bought helium tanks) and homemade cards to a friend's house....little Zachary had to have surgery Tuesday and was recovering at home today. Asher wanted to put "HAPPY BIRTHDAY" on the cards and I said they were going to say "GET WELL." I could tell he knew exactly what that meant. By the end of his treatment, he was opening each card he received and was saying, "It says, 'Get Well!'" Anyway, afterwards I took the kids to Famous Footwear. They were both needing new shoes, probably for a few months now! The first store Asher has gone INTO since his transplant. I knew there would be hardly any customers, and sure enough, there were NONE in there. Asher picked out shoes. I put the ones he chose back on the rack (they were too big) and put some new ones (that I picked) on his feet and he went running off, even jumping a little. When I saw his little jumping move, it reminded me of a move you make in basketball when you're guarding someone with the ball (I used to play basketball). He had a huge smile on his face. The salesman asked him if they felt good and he said, "Yeah, they feel good." I knew the salesman had to be smiling after seeing Asher enjoy his new shoes (and I wish I had had my camera!).
Posted by Steph in
Family, Feelings, Home after Treatment, on Tuesday, April 17. 2007 at
I have settled into the schedule, getting up at around 6am and making sure to shower before the kids wake up, running down and starting a load of laundry if needed, then the kids are up and it is non-stop breakfast, diapering, dressing, disconnecting/flushing Asher's catheter until around 9am, and then they run off and play and chores or catch up on computer stuff starts....soon it seems I'm cooking again....3 kids, someone is almost always hungry, or tired, or wanting something. The afternoon drags a little, as I get pretty tired, my baby boy kicking me and some braxton hicks contractions thrown in the mix (can't believe they started this early)....yeah....I'm tired from 2pm till Scott gets home. I drag around the house doing what I need to do. When it is nice outside the kids and I sit outside or play outside, in front, waiting for Scott to get home. Usually when Scott gets home I can't wait to go to bed, but usually wait till at least 9pm so I can sleep well the entire night. I truly am a morning person. I'd have more energy longer if I wasn't pregnant and I look forward to the day I can run and play all day like the kids LOL. Soon the AZ heat will kick in, till then, we are truly enjoying this nice cool breezy weather.
I can't wait to try out the pool, but after 18 months we are still working to get one that doesn't end up stained 2 days after it is filled with water. Today they jackhammered the pebble sheen and tile and in-floor cleaning heads out....what a HUGE concrete dust mess now outside, all over my patio, belongings, windows, house....yuck, they didn't put plastic up or anything and when they were done they used an air hose and blew the dust towards the house. Asher can't go out there now till we get that mess cleaned up. I guess it should only be 7-10 days till the pool is done and filled with water again. I can't wait to use the pool, but I feel so bad Asher can't go in with the rest of us. When he can't do something (like eat before an MRI or swim because he has a central line (broviac right now)), I must go without too. That is how I have always been. It wouldn't even occur to me to feed myself when he can't eat....but swim? I'm not sure. It was interesting, right after he came home from transplant hospital stay, Asher said, "I can't go swimming. Just mommy and Lexa can." He seemed totally fine when he said it too. I wonder what will happen when everyone suits up to go in. I guess he knows he can just get his legs wet. Till then, he's enjoying watching the men "fix" his pool, from inside the house, looking out the window(s).
It is nice that spring is truly here too, because our grass is green again and (most of) our trees. We lost LOTS of trees from the horrible frost over the winter, but thankfully we planted a lot and do have some green ones left. It is actually nice to have yard work to do again. I LOVE yard work (I really don't care for house work). It is just so nice to go out and be in the yard and sit quietly or watch the kids run or kick a ball with the kids in the grass.
Just normal stuff.
I went to get my haircut this weekend. I hadn't gotten it cut since February 3, the morning before my flu hit. Longest I had gone without getting it cut. It was busy there Sunday morning, but there were lots of stylists for all the customers. I was watching a family. A dad, a mom, a boy (about Asher's age) and his younger brother. I was noticing how much hair both boys had, and how blonde it was. I was noticing how cute they were. I smiled watching them play, the older boy hugging his brother and trying to keep him from running off and being naughty. Then I felt a little sad....but I continued to watch them, especially when a stylist started to buzz cut the youngest boy's hair. I can't wait to give Asher a haircut again....
It is when I am not with Asher that I feel the pain of the past (almost) 11 months. What he went through. What I fear. What I remember. What I hope for. What I wish never happened. I find I don't want to be out, alone. After my haircut I went to check on car seats at a store and then I went right back home. I didn't buy a thing. I had hours to just do whatever I wanted, and I didn't want to be anywhere but home. I don't have to think about cancer or memories or my fears when I'm at home. I'm too busy to do that there....
I do truly feel like Asher isn't sick anymore. I know, because he still doesn't have any hair (no eyebrows or eyelashes either) that if we go out, people do stare at him. It is then that I am reminded of his cancer, the effects of chemo, the heartache I have felt and carried for almost 11 months now. I can't imagine how much more of that I would feel if I actually went out with the kids and took them into the grocery store or other stores, but I don't do that. The shopping is left to Scott right now. He stops on his way home from work. The only time we have been out recently was to go van shopping. It was finally time - 4 car seats for 4 kids under 5, our family vehicle, bought just 4 years ago, just doesn't work for that scenerio anymore, and I am tired of not having a trunk. Asher had his mask on because it was windy outside. Everyone stared at him. The sales men that helped us didn't make it noticeable, but other customers made it very noticeable. I did have to tell Asher that he couldn't play in the toy area of the car dealership Saturday, that was hard. In fact, then I had to leave with the kids because it got to be too much, but otherwise, my boy is just Asher, and no, he isn't sick, he doesn't have cancer, he is just waiting for his hair to grow back....and I'm waiting to feel completely normal again. It might be awhile.