Posted by Steph in
3 Years Post-Treatment, Feelings, Letters to Asher, Scans, on Thursday, February 10. 2011 at
me: "Your MRI is in two weeks. On a Monday when you don't have school. Its a holiday. Daddy doesn't have to go to work either. Do you know why we do the MRI?"
Asher: While wiggling his fingers by his left temple, "To make sure there are no balls in my head."
me: "Yes, tumors. We are making sure no tumors are growing, in your brain, and your spine. They will scan your spine too," I said while rubbing a few fingers along his spine.
me: "Because the fluid in your brain travels down to your spine, and we need to make sure there aren't any tumors there, too. If your back ever hurts, you need to tell me."
Asher: "My back hurts."
me: "Like hurts and never goes away, or hurts and gets worse each day."
Asher: "Oh." (long pause) While touching the back of his head, at his scar, "Why did they cut back here, cut my head, when I was awake?"
me: "They never cut your head while you were awake."
Asher: "Yes they did."
me: "No, they put you to sleep just like you go to sleep for your MRIs."
Asher: "Yes they did. It really hurt."
me: "I wonder if you are remembering when you had the open wound and they were changing the dressing back there."
Asher: "They did cut back there while I was awake; I was holding a toy and looking this way and it hurt."
me: "That was when a child life person came in and gave you a toy to try to distract you. I wonder if you are remembering when they took the tape off your head. The very first time they did it, you were awake, but sedated with medicine, which didn't work very well. You were crying and holding my hands. I was there with you to make sure you were okay."
Asher: "They did cut my head when I was awake. Were you there to see it?"
me: "No, I couldn't go in with you for surgeries."
Asher: "Why not?"
me: "Because I am not a doctor or a nurse?"
Asher: "Why couldn't you go in and see the surgery."
me: "Like I said, because I am not a doctor or nurse."
Asher: "Well, they hurt my arm, right here," he said while pointing to his arm near his elbow. "And it was all bloody and it really hurt."
me: "Wow. (pause) Sounds like you remember having your Picc Line in your arm. You got an infection in the central line that was in your chest," I said as I touched him over his heart. "And you had to have a new one put in, in your arm. Before you started the last three months of chemo, they took the one in your arm out and put one in your chest," I said as I touched over his sternum. (bit of a pause) "OK, it is time to go to sleep now. Say your prayers. I love you. See you in the morning," I said as I kissed his forehead. I left him, in his dad's bed. (He still sleeps with his dad. When he started 2nd grade in August, I had him sleeping in his own bed. But, it didn't last but a few weeks.)
Asher: "Good night mom," he yelled to me after I was already downstairs.
me: Yelling loudly, "Good night Asher."
Downstairs I was in a bit of shock over his memories. He even seemed a bit upset while talking, as if he really remembers the pain. Wednesday afternoon I talked to my psychologist about Asher's and my conversation. I told her I hadn't looked at pictures in a very long time and I don't think Asher has seen any. His memories seemed real. Can he really remember? She asked me how old he was then. She said it is possible, that he remembers. Then I had a sudden thought. I wondered if that is why Asher wants the IV in his foot for MRIs instead of in his arm.
Posted by Steph in
3 Years Post-Treatment, Feelings, Letters to Asher, on Monday, January 17. 2011 at
We have been blessed with another year with Asher. He's grown physically, normally. He has remained healthy and not needed any antibiotics or doctor visits for illness. He can coast on a scooter and keep his balance. He is still trying to learn how to ride a bike without training wheels. He is reading better (but has trouble with story re-telling). He's good at math. He continues to be good at video games. He has friends. He is still shy. He tells me, his mama, that he loves me, and hugs me. He tests me, whining like a toddler, to get his way, but does not win. He's a normal kid, with a not-so-normal past.
Sometimes you hear, "Everything happens for a reason."
Sometimes you hear, "You will be happier if you are more grateful."
Sometimes you hear, "Don't fear or worry about things you can not control."
But, rarely do you hear the emotional truth, from a parent of a child who has/had cancer.
The emotional truth is that I am still searching for the reason, or trying to figure out how to live without one.
The emotional truth is that I thought I was plenty grateful. Somewhere, somehow the emotional trauma caught up with me, and no amount of thankfulness has repaired my pain.
The emotional truth is that I feel afraid and I worry.
A friend shared this blog article with me. My friend said, "It is written by an 'autism mom,' but I thought you could possibly relate." I read it and sobbed. Absolutely sobbed. There are no words that will express how I feel when I realize I am not alone.
When I last posted that I needed a break from this blog, I had started weekly therapy with a psychologist (July 1, 2010). By mid-August, after Asher's last MRI and clinic, I was much worse. She said I was in clinical depression and needed to seek help from a psychiatrist. So, I did, in early October. The med (Lexapro) the psychiatrist recommended, and prescribed, and I took, made me worse. By late November I chose to stop taking Lexapro (after my psychiatrist was unreachable (he went out of town for 6 weeks)). Under the advisement of my therapist, I voluntarily went into a mental health hospital in December to withdraw from Lexapro and get on new medications (Wellbutrin SR and Seroquel). I was there 12 days. Now I'm back to weekly therapy with my psychologist, and back to my psychiatrist bi-weekly. (Updated 3/3/11: Seroquel wasn't helping me and it was disturbing my sleep. My psychiatrist gave me Symbyax and instantly I noticed a change in my sleep and I even felt really good the first week I started it. Not so sure right now how the mediations are working for me, but just wanted to update here.)
I have to say, thank goodness for real help.
I have no shame in my emotional journey, and I share it with you.
And, to my beautiful boy, happy birthday!
Posted by Steph in
3 Years Post-Treatment, Blog, on Saturday, July 3. 2010 at
Asher is doing well and I need to keep his new healthy life separate from the past sick life.
He currently has MRIs every 6 months, so not often, but I will post scan results under "TREATMENT" (clickable along the top of this frame around the text).
I've gone through and made most of my "feelings" posts from the last two years private so I can read them, if needed, in the future, but I do not want to read them anymore.
The blog will remain up, as a way to reach out to those that may be interested in Head Start clinical trial for a three year old (or those under 6 that do not receive radiation). I am available if you have any questions; just sign the guestbook and I can email you back. I've done this for several people who have emailed me.
Posted by Steph in
3 Years Post-Treatment, Feelings, on Sunday, June 27. 2010 at
But I think that was because I stopped talking, again....
I have found, coming to my own blog, to blog, has become emotionally disastrous for myself....the pictures, the memories....all of it....
I wish I could wish away the memories....the pain....
Found a new doctor, really near my house and her internist is amazing....connected with her right away yesterday....
It is unrealistic to answer What do you want to accomplish in therapy? with, "I want to not remember that time in my life...." Even more, unrealistic, to say, "I wish this wasn't my life."
I thought about this yesterday, after therapy with my new doctor/internist team (and I think I found two wonderful women to work with), that I simply can not answer, honestly, that question What do you want to accomplish in therapy?.
I want to not feel like I'm in a dark hole.
I want to clean the house and not feel like it is too much for me.
I want the memories to not hurt me so deep in my throat and shoulders and chest.
I want to not feel pain when I look at the back of my son's head.
I want to not feel all this anger.
I want to not feel afraid to accept another sunrise because something bad might happen.
I want to be able to read a book about a sick little boy and not have it make me swell up with tears.
I want to be able to go pick my kids up from school, and not look at all the kids there and wonder who will get cancer and who will die.
I want to not feel this fog....this murkiness around me....
I want to clear my head.
I want to play and run and ride a bike, and play games, and teach my kids all the things I have inside me to teach.
I found it really hard to answer another question Who is your support system? I actually, paused, thought, paused, and then said back to her, "What do you mean by that?"
When asked if I took medication, I answered, "Yes, but I stopped F E E L I N G." Then I was asked, something like, How long did you stuff your feelings with this medicine?
I was trying to think back, wondering if she really asked me this, in this way, because I thought could she really understand what I was saying?!
I have been struggling, deeply, about admitting that I pray....if that makes sense at all....this struggle with prayer, and life and death, etc., has been going on most of my life....there is a lot of loss, illness, death in my mind and heart, and it is a struggle. And, I do not believe, as two people have said to me in the last two months, that my pain and heartache are due to the devil. I believe it is because my mind is just wired a bit different and I need help to find much better coping mechanisms. I believe I just didn't get a chance to cry, grieve, process all that went on when Asher was ill, and unfortunately, I don't think I can when I am taking care of four children, four pets, a house and yard....
BUT, with that said, I believe my loved ones on the other side have shown me the way to this doctor....I'm feeling positive, through my tears this morning, that THIS IS IT. They ARE going to help me. I am going to be able to deal with the overwhelming emotions much better. I'm going to take back control of my emotions and life.
At the end of gathering my info, the doctor and internist sat down with me and said they want to do EMDR (eye movement desensitization and reprocessing) therapy with me for PTSD (post-traumatic stress), saying I was a perfect candidate....we start this week, unfortunately she won't see me on Saturdays, but that was too much to hope for. I hope it "works," but I know if it doesn't, something else will, it is just a matter of time.
I'm Trying to remember how the psychologist explained this to me....let me see if I can type in words what she told me about EMDR.
When the trauma event occurred (when Asher was diagnosed with cancer), my body went into survival mode, trapping "pictures" of memories in the right side of my brain (the emotional side). So, now when memories come up, I go into emotional over drive, and can't process facts or thoughts without emotions. What EMDR does, or hopes to do, is move those pictures over to the "fact side," the left side of the brain.
I hope I explained that correctly.
The doctor says, the hope is, that I can take a phone call to schedule clinic without crying, some day, but today, it didn't go so well. I couldn't stop apologizing to Annie for crying only a minute or so into our conversation....
(Edited to add: I won't be working with the internist, though, I'll be working with only the psychologist, starting July 1st. After the first visit with me, the internist asked the doctor to take me as a client because her husband was currently in treatment for brain cancer (currently doing the radiation part of his treatment)!)
Posted by Steph in
3 Years Post-Treatment, Tests, on Wednesday, June 16. 2010 at
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.
Posted by Steph in
3 Years Post-Treatment, Feelings, on Sunday, June 13. 2010 at
"They also talked to us as the caregivers about how now is the time that the reality of it all begins to settle in and you begin dealing with your own emotions, etc. I have found that to be very true for myself. It's sorta like being on a crazy roller coaster ride - the ride comes to a stop, but you are left sitting in the front row sorta in shock. You watch others zipping along, but your life just doesn't quite "zip" the way it used to anymore. Sorta hard to put into words .......... "
I wish I was alone, in this, meaning no other mommy had to feel what I have been feeling lately, but I know there are so many. Her email to me tonight, this little piece of knowing that I'm not alone, and I'm normal, means a lot to me.
Posted by Steph in
3 Years Post-Treatment, Feelings, Thank Yous, on Saturday, June 5. 2010 at
I’m not sure I was doing it for her; I needed to thank someone.
I FELT LIKE I WAS NEVER THANKFUL ENOUGH.
Today I feel like I am not thankful enough.
My son is ALIVE and THRIVING. He is amazing and beautiful and growing and learning and doing so wonderful.
I’m not thankful ENOUGH for this....
I’m in tears....
I feel like I need to give up my life.... Like OK, he survived, now take me....
I never made a deal with God, not that I remember, but the way I feel now, it is sort of like I did, subconsciously.
So, I made a paper-bag card. Front was a picture of Asher from the week of diagnosis, May 2006, and inside a picture from now, May 2010. Then a photo from each year in between were on sheets you could slide out of the inside of the bag. Inside, next to the picture from May 2010, I thanked the doctor for being the very first doctor in our lives to save my son. I thanked her for ordering the urgent MRI after only one 45 minute sick checkup. I thanked her for giving me these extra years with Asher-B. I told her there really is nothing in words that can express what I truly feel in my heart (because there aren't).
I gave it to the gal at the front desk, asked her to put it on the doctor's desk (I didn't want to disrupt our well-checkups with emotion), and as the kids were getting weighed, she came out and gave me a hug and said, "You're going to make me cry at work." And then she said, "I went to 1000 years of school for that one day."
Posted by Steph in
3 Years Post-Treatment, Feelings, on Friday, June 4. 2010 at
And, when he lost his hair in chemo, I came to LOVE THAT BALD HEAD OF HIS.
But after a year or two, after treatment was over, it became difficult to look at any photo of Asher bald. The big website one, at the top left here, isn't too bad as he has a hat on, but even Asher says, "I look weird" when he sees that picture (I'm sure because no eyelashes or eyebrows).
Last year, after kindergarten was out, I thought I would like his hair being short, so I buzzed it off right when school ended.
Then his left eye started drifting inward, and I had that major scare that his cancer was back....
But it wasn't.
But after his hair grew again, in first grade, I kept the top much longer for him. He liked it that way. A few weeks ago I left it even longer, as he always wanted to comb his hair straight down and close to his eyebrows. So, I actually thought this was my best haircut for him.
Well, today I buzzed off my baby's hair, with a #2 clipper. His hair is naturally curly and just looks ratty in the back after he lays on it, leans on it, sits in his car seat, etc. I was going to keep the top longer but then it was just easier to shave it all. Then I took pictures. He has those same gorgeous blue eyes that Asher and Aubree have. He looks much more blonde with less hair. His head is round. And, he's almost three. And, looking at his picture today reminded me of sick Asher. Not Asher. Sick Asher. Asher has the same chin as the girls, from my genes. Andrew's face is so much like his daddy (comparing age wise), so in that way, he doesn't look that much like Asher to me, but the hair....
"I want a summer haircut, too" Asher says tonight after brushing his teeth. "Just like Andrew's." "Oh, you don't want it longer like this? I thought you liked this longer?" "No, I want it shaved off." "OK, well, maybe I can buzz it off with a #7 then, so it isn't too short and your scar doesn't show as much." "No, I want it just like Andrew's, I like my scar" he says. "Okay, I'll do that after the two birthday parties you have to go to on Saturday and after your two neuropsych test days next week then." "OK," he said.
I guess I'm just going to have to deal with this short hair issue and what it does to my mental craziness.
Speaking of mental craziness, I had a therapy session on May 26th. The first one as an adult (I'm almost 37), on the 4th anniversary of Asher's cancer diagnosis (I actually didn't pick the date, I noticed it after the lady scheduled it for me). It was an extremely emotional 40 minutes. The lady was very nice, however, she is just too far for me to drive. I see I need to go more, and maybe for months, and probably include my husband, so I'm going to find someone closer. I'm in the process of this....as well as the social worker that works with the oncology team is guiding me a bit.... I also bought, from Amazon, a book: "Writing For Emotional Balance: A Guided Journal To Help You Manage Overwhelming Emotions." It should be delivered tomorrow. I can't wait to journal and work with this guide.
Posted by Steph in
3 Years Post-Treatment, Feelings, on Monday, May 31. 2010 at
This month has been especially hard for me. It might be because I made that video....looking at photos of Asher pre-diagnosis made me relive it all over again and I'm not sure that was the healthiest thing for me to do. Sometimes I think I need to do these things, because it will help heal me, but it makes me feel horrible and so much worse.
I find that, four years after diagnosis, not many people think about Asher or his cancer or his treatment, and no one asks about it anymore. But, I find I need to talk about it, a lot lately, all the time, it is like a daily book that I need to open. It is very painful. I'm in a very tough spot right now in my life and I'm saying it, I'm letting you all know. It sucks. It really really sucks.
I went to my first therapy session last week, on the 4th anniversary of Asher's diagnosis. It was only 40 minutes, and the therapist concluded my marriage was the source of all my problems, and as I was pushed out the door, I felt horrible. I could barely function the day after.
Yes, my marriage isn't strong right now, but it isn't the "source" of this stuff I feel. With a large yard and house and four children to take care of, I feel like I don't have enough time to process when I need to process. I find myself talking (or trying to talk) about the same stuff over and over to my husband, who, from what it feels like, doesn't want to listen to me. This weekend I was even asked by my mother-in-law if I talk with Scott about anything fun. Am I really that depressing of a person? It is especially hard for me, because I would rather talk to someone who has an emotional interest in me, someone who might even love me. Lately I feel like there are very few people that even love me. As well, I feel like really talking about this stuff alienates my relationships. That is why I finally decided to call a therapist. What made me pick up the phone....being alone at home, husband out of town, and crying that I had trouble stopping.
I feel like I need to go away for a week or two and just process and cry.... I refuse to cover this up with Zoloft or any other drug. I am convinced, a therapist can help me. The right therapist.
I'm not going to go back to this first therapist. I found one much closer to my house, and am hoping I can get in to see her early a.m. or in the evenings when Scott can be home, or during the day when my mom can watch my 4 kids. She is even trained on EMDR Therapy, and maybe that, and a little of Cognitive-behavioral therapy, I can be helped, without medication.
Here are some things I feel, at random times:
Re-experiencing the traumatic event
Intrusive, upsetting memories of the event
Flashbacks (acting or feeling like the event is happening again)
Feelings of intense distress when reminded of the trauma
PTSD symptoms of avoidance and emotional numbing
Loss of interest in activities and life in general
Feeling detached from others and emotionally numb
PTSD symptoms of increased arousal
Difficulty falling or staying asleep
Irritability or outbursts of anger
Other common symptoms of post-traumatic stress disorder
Anger and irritability
Guilt, shame, or self-blame
Depression and hopelessness
Suicidal thoughts and feelings
Feeling alienated and alone
Feelings of mistrust and betrayal
Sometimes my anger is very focused, like if I see the words "Praise God," or "everything happens for a reason," I feel like I'm going to explode. I've been waking up at 3am every night this month. This is new. I keep thinking I'm just hot; been pretty warm. But, it is the depression....
I need help.
Posted by Steph in
3 Years Post-Treatment, Feelings, on Friday, April 23. 2010 at
Yesterday, I had one of my mini-meltdowns. After a few different "medical" things ("symptoms") were showing up with Asher, I just lost it and cried and cried and cried some more. Because, sometimes it is just too much for me to take.
You might think after four years of living with the knowledge that my son had brain cancer, and three years of not having to live with it (meaning not being in treatment), that this would all just be a nightmare from my past. A big bad dream. A traumatic event that I am just supposed to let go of, kind of like crossing the monkey bars, because it is in the past. You might think I could stop thinking about
WHY DID MY SON GET CANCER?
WHEN DID IT START TO GROW?
DID HIS TIGHTLY WRAPPED UMBILICAL CORD CAUSE HIS EYE DAMAGE AND MAKE THE TUMOR GROW?
DOES HE HAVE A SPECIAL GENE THAT MADE HIM GET THIS?
WILL MY OTHER SON GET CANCER?
WHEN IS IT GOING TO COME BACK?
WHEN IS IT MY TURN TO WATCH MY CHILD HAVE A RECURRENCE?
You might think it, and I might think it.
But, just like the many other things that float around in my brain at any given moment, those questions hover in there and all it takes is hearing, "I have a headache," to bring them right up front. When they are in front of my mind, Asher's cancer might as well be back, because I throw myself into a research mode. I can't stop. I Google, looking for answers. I want answers. I NEED ANSWERS. I look for answers to things I don't really need answers for, at this time. I talk myself into 'these symptoms mean his cancer is back' and then I go looking for proof, or lack of proof. Then the heart (the part heavy in faith) comes in and tells the mind, stop it, his cancer isn't back, he has a cold, get over yourself, pick yourself up, get off the computer, he's cured....but I remain very fragile for hours and even days after....
It is sometimes a battle between science and faith in my own mind. I'm still convinced it is okay to be an engineer and believe in spirits.
So last week with the hand tremor, this week with the headaches, tummy aches, and eye flutters....yeah, I have been stunned and numb and very emotional the last two days. And, I tell myself, it is all for nothing. There is no reason to be panicking, or crying, or thinking what-if, or believing in anything past today, really.
Yet, I want answers. And I often think about gathering all the cases of childhood brain tumors and looking at the data so I can find the cause for my son's cancer.
But, I'm not going to get answers. And, I am trying to learn to not need them.
If Asher didn't get a fever last night, I could get an MRI, and a clear scan could bring me back down. Back down to some normalcy. I'd be back to functioning, but....BUT THOSE QUESTIONS HAVEN'T BEEN ANSWERED.
I am an engineer. I problem solve. I think ahead. I think about what-ifs. I believe in the right and wrong answers. I believe there is a solution to avoid buckling and failure. I believe there ARE answers.
I believe in God. I believe in spiritual connections. I believe in "the other side" (Heaven to some of you). However, I am not religious.
I do believe in medicine. I do believe in clinical trials, chemotherapy, surgery, doctors, nurses, antibiotics (oh do I believe in antibiotics!!)....
I do believe God works through people.
I do not believe death is a bad thing. (That's a tough one to leave as one sentence, without further explaining, but I am going to leave it.)
I do believe in angels and spirits. I do believe my maternal grandmother has sent me messages in my dreams. I do believe my father has visited me at night to comfort me.
I do not believe everything happens for a reason. I do not believe my son got cancer for a reason.
I do not believe in praising God when my son gets a clear MRI; I don't believe God or Jesus had anything to do with it.
I do not believe if I pray for something I will receive that something.
I believe prayers don't have to be spoken.
I believe if I am angry with God, and ignore Him today, He will forgive me when I come back to Him tomorrow.
I believe everyone is allowed their own beliefs.
I do not know what I believe, or what there is to believe in or about, 100% of the time. I know tomorrow I could change my mind. And, I know, sometimes there are no words to express what I believe.
But....tonight I will say this:
As awesome as I think God is, I think people deserve way more praise and credit for what they do, who they are, and what they plan for tomorrow. People matter. People need comfort. People need encouragement, understanding, and hope. People need recognition and appreciation and respect. People deserve the truth; people can handle the truth. People are always growing. People need other people. People should be trusted. People should work together to build something better.
And that is love.
People should love each other before they die....
Posted by Steph in
1 First Grade, 3 Years Post-Treatment, Eyes, on Wednesday, April 21. 2010 at
Asher's first grade teacher called me at 11am, the kids' lunchtime. She said she noticed Asher's eyes fluttering today.... Once I get a hold of my emotions, I will talk to her more about it, probably after school.
Just doing some reading, after my first reaction being - the fluttering is due to his scarred retinas - however I don't know everything and didn't see it happen. Read this on a website: If when he has the eye fluttering he stops his activities and stares, it could represent a seizure. Which is what I mentioned to Annie today when I called her about these things, and of course what put my emotions in instant panic when the teacher called. But, maybe it could just this bad eyesight, especially if he had just come out of the sun and into the classroom (although it a very cool, cloudy day for us today).
I talked with Asher's teacher after school and she said Asher was reading in front of his class. It was his day to share his journal. He was standing in front of the class reading, looking down at his paper and then back up at the class, and then back down at his paper. She said all of a sudden he put one hand to the side of his temple, near his eyes, and then both of his eyes fluttered. She said both her and her student teacher noticed it. The teacher said, "Asher, are you okay?" and then he said, "Yes!" He responded immediately and it doesn't seem like a seizure to me. Sounds like a focusing problem....poor eyes.
Anyway....when we were home an hour or so he said, "Br, I'm cold," and sure enough, he had a 101 fever....so I am sure all this crap is just because he's sick!! What a relief!!!
Posted by Steph in
1 First Grade, 3 Years Post-Treatment, on Thursday, April 15. 2010 at
4/20 - talked to Asher's teacher tonight - she said she hasn't seen anymore tremors - she did tell me it was in one hand, she thinks, as he was holding a book with one hand and pointing to a word with his other hand and the whole book was shaking - I'm thinking I don't need to worry unless I see it happen again....
Posted by Steph in
3 Years Post-Treatment, Feet, on Saturday, April 3. 2010 at
He had also fallen twice, two days in a row, at school during recess, and scuffed his knees and elbows to bleeding, both days. One day he had jeans on, and still bled through, the next day shorts. When he got home, the first day, he said to me, "But I didn't fall on my face!" Yes! This must be a very good sign....that he can catch himself now on a fall....he has ALWAYS landed on his face/head during his falls (following treatment).
He has continued to walk on his tip toes A LOT, even while wearing shoes, not just bare foot. It used to be that I really only noticed after he was tired, after a full day of school or something, but I seem to notice it whenever now....going to try to keep a better record of it....
Oncology and PT has never addressed this, no matter how many times I have told them or asked about it.
Now I am wonder if he has Neuropathy....
Just started reading about it....esp. this link:
I may take him to a foot doctor I went to for my flat feet / pain....
4/15 - first thing in the morning, sitting at the kitchen table, Asher says, "My ankle hurts."
4/17 - doing some reading on the toe walking....have I not looked this up on the internet before? Wow there is a load of info, most of which is not very promising, in that the toe walking may be permanent....torticollis....cerebral palsy....Sensory Integration Disorder....idiopathic toe walking....
Interesting though, in my reading, from a toe walker herself, regarding her ankles, "My parents tell me that I've been walking on my toes since I was a baby, way back when I used a walker. I am now fifteen....I sometimes experience sore ankles, but those can be relieved with ankle tensor bandages. I did experience a "clicking" in my ankles when I was eleven, but the doctor said that it was just a tendon clicking against a bone. I am actually faster when I am walking on my toes, and I feel this is my natural way of walking."
In all my reading, I did not find anyone's child with a past brain tumor, chemotherapy, and toe walking....
In my opinion, and I'm not sure I'm allowed an opinion since I'm not a doctor, but I'm still thinking his toe walking is related to his control of his balance. He wore those foot braces back when he was in the hospital and not walking much, and since I wasn't there when he got them (Scott was) I really have no idea WHY he got them, or if they knew he had a tendon problem or what.... Anyway....it reminds me of playing basketball....bend my knees, stick my butt out, stand on the balls of my feet, shoulders wide, elbows out, fingers spread apart some, hands facing inward....defensive stance....balance....
Anyway, sounds like I could take him to a pediatric orthopedist....where they could diagnose him....and then most likely discuss braces, exercises, casts, surgery, or outgrow on his own....
Or I could take him to PT....
I think I'll see what his pediatrician thinks and go from there.
Posted by Steph in
3 Years Post-Treatment, Teeth, on Thursday, April 1. 2010 at
Back in January, radiology at PCH said it was no big deal....they have kids with dental appliances all the time....
But, a friend told me this:
"Most of these appliances have at least some stainless steel in them, and although they don't pose a problem in terms of being magnetic, there are still 2 issues: (1) some hospitals won't tolerate any stainless steel to go into the MRI at all, if they make you pass through a metal detector stainless steel will be detected, and (2) stainless steel causes artifacts that will obscure certain areas of the brain."
Now to figure out if I have to have the space maintainer taken off and put back on for each MRI....not sure what that will cost us, but at least we are on 6 month MRIs now. And, apparently the hospital radiology team has a website that has all sorts of appliances listed and how they affect the MRIs....so getting brand and other info to them next week....
Talked to the dentist and the lab team today. This is called a Nance Holding Arch Appliance (NHAA). It is made out of stainless steel and nickel and acrylic. Even if we had another appliance made, they can not make the bands out of titanium, only the wire. I've sent this information to radiology/oncology. The dentist will remove the appliance before the MRI (like a day or two) and then put it back on after the MRI (Monday in case of a Friday MRI) for no charge, if that is what we decide to do.