Posted by Scott in
Chemotherapy, on Wednesday, June 28. 2006 at
There's a high chance that we'll be put in the "Head Start III" Protocol Trial which is a trial specifically set up to reduce Radiation. Radiation of anything really has a high risk of long term side effects on the brain, and in my opinion, that's a really good thing to try and avoid Radiation at all, or for as long as possible.
it will all depend on how Asher "takes" the chemo and if the cancer responds well to the combination of drugs being used. If the tumor bed dissapears, then we may be able to avoid radiation altogether (from what I'm remembering at this time of night w/o re-listening to the tape of our meeting).
I've been looking for information on the protocol and I found their main site and some other corresponding information from a powerpoint presentation given at a conference in 2004.
Children's Head Start
Headstart III, From Dream to Reality
As well as some information on the first two head-start treatment protocols
HeadStart I, II
Basically, there are 5 cycles of chemo drugs given. After each cycle, they hospitalize Asher while his immune system suffers and then rebuilds itself (white/red blood cells) and he gets an infusion of his own Stem Cells.
The biggest "uff-dah" from us was the probability of hospitalization throughout the implementation of this protocol. Basically, Asher would be looking at spending the majority of the next 5 or 6 months in the hospital due to the serious impact on his immune system and the risk of infection. That means that one of us will pretty much need to be at the hospital during that time too.
Still trying to absorb everything that was said, and it's going to take a while. In the next few days we need to get a hearing test done, kidney function test, blood tests and meet with the in-home care company.
Here we go.....
Posted by Scott in
Surgery, on Wednesday, June 28. 2006 at
It's weird. Earlier today I heard myself saying to someone "When I had kids, I didn't know I was signing up for this". But you know what, parenting sometimes throws you a curveball and you can either sit there and watch it strike you out, or you can take a honest hard swing at it and hopefully hit it out of the ballpark.
This whole ordeal has been a wake-up call to me that I don't think has sunk fully in yet. Life isn't always about having fun. Life isn't always about perfection. Sometimes Life Just happens and you need to deal with it.
This is Asher's Catheter. I feel so bad for him needing to have this. I know that I wouldn't like to have it and can't even imaging what he's thinking about it. Thankfully he hasn't started to try and rip it out, or play with it. i think it's still too sore and tender to do that (He just put it in on saturday).
Posted by Scott in
Surgery, on Sunday, June 25. 2006 at
Posted by Scott in
Hospital Stay, on Sunday, June 25. 2006 at
Said when they kept calling Code P on the intercom and the door was partially open in our room
"Daddy, I'm wanta play Hippos when we get home"
After he saw a commercial on TV for Hungry Hungry Hippos Game. We just bought it at Wal-Mart.
"Uh oh, it's coming off" (about 30 times)
Referring to the tegaderm bandage on his head
Said when he pressed his freshly filled milk glass against his nose, followed by a huge roar of laughter.
Posted by Scott in
Scans, on Sunday, June 25. 2006 at
Posted by Scott in
Surgery, on Sunday, June 25. 2006 at
We came to the hospital today aware that they might want us to stay over night, but curiously hopeful that they would discharge us this evening, because Dr. Manwaring had mentioned that it was only a 15 minute surgery and that it could probably be released "same-day"
The minute that a nurse brought us back into the pre-op area, Asher started to get a little cranky. He got weighed - Asher is 15.4 kg today and measured - xx in ?
and then we answered the same sheet of question as the last few times we were in. Is he allergic, how's the anestetic, etc.
Asher was pretty good with Steph and I in the pre-op room when we kept him busy with his Gameboy, Madden football on Playstation that was in there, Every time he saw a nurse or a doctor, he would freak out a little bit. For that reason, we held off on putting on his admitting band, or the hospital gown he would need until the last minute.
We talked to the doctor, learned about the surgery about the shunt, the Catheter they would put in, and a few more trivial things. Basically, the shunt was sitting on an artery and they cut a piece off and put it in the 2nd best place. They also turned it down to 10 from where it was before. (On a side note, I saw the bill for a shunt, and HOLY COW!!!! I wish I had invented programmable shunts!)
We learned that the catheter we are having is called a Ash split catheter and Asher will have a couple of tubes sticking out of his chest for a month or so. I'm sure he'll just HATE that. The oncologist chose this because it's the best one for the chemo he's going to be getting and also allows them to do harvesting of stem cells for testing during chemo.
The oncologist is not here this weekend and I believe he wants to talk to us Monday to tell us about the protocols and walk us what we are about to embark on.
A little over an hour into the operating time, we talked to Dr. Manwaring and he said everything looked great, he was worried a little about the head-incision for the shunt in that it looked a bit 'red' (maybe infection starting) and wanted us to call him anytime we see it getting any redder.
We also learned that CSF fluid is crystal clear - which I believe means that we don't have any cyst fluid building up in the brain and there is no bleeding from anything going on - but that's just what I remember reading somewhere.
Finally it was all done and the pediatric surgeon talked to us about the cath surgery. Overall We waited for about 2+ hours for this set of 15 minute surgeries to happen. Not sure what the delay was, but it was probably just set up and timing issues. What they did end up doing in everything is repositioning the shunt, redressing his bandage, installing a ash split catheter, doing a spinal tap.
After the operation, Asher woke up from his anestesia on Fentanyl and Steph did an amazing job with him keeping him calm and just sitting with him on his bed! The doctor also gave him Clonidine and Fentanyl during the anestesia as well because he said that helps some kids wake up better. I think she is probably better at this then I ever was! We also got confirmation that for sure that he would be staying the night in the PICU due to the repositioning of the shunt.
Asher was sleeping and Steph left a bit ago to go and take care of the girls and feed Aubree tonight. Asher just woke up as I'm writing this, so I'll fill in the middle later. he's got a temperature, so we'll give him some tylenol to get rid of it. He seems to get one everytime he has surgery and tylenol has taken care of it each time. He seems to be awake and quiet after the Tylenol and is just content watching Mary Poppins and doesn't want to eat any of the food we got him.
(Update: Asher's temperature went down one whole degree in about 20 minutes. Hurray for Tylenol)
Posted by Scott in
Scans, on Saturday, June 24. 2006 at
The doctor seemed pretty disappointed to find it in there. He said that he scanned all over the head when he was in there the 2nd time and didn't see the tumor. He figures something is covering it up. I guess we need to just trust chemo to take care of it.
We didn't get to meet with the tumor team today as one of them was out of town and the other one just had morning hours today. We'll probably talk with them next week about the protocol they want to select to treat Asher with. We've decided that we're going to stay at PCH for the treatment instead of trying to find and travel to a different hospital/clinic throughout the country. It may limit some of the treatment options, but we trust in the team and doctors of PCH and in the COG that they are a member of, and they will do their knowledgable best to help Asher. I'm sure of that. If at any point, something happens to mess up our trust, we might do something about that, but not for now. All of our kid-watching support is in Arizona. We have a world-class hospital in Arizona. We have a world-renown neurosurgeon. I have my job here. It just makes the most sense to us. Thank you to everyone who's supplied information on all of the possible locations/treatments/protocols out there for me to research. It's really meant a lot that you've taken the time to care about someone you don't know at all. I know that you're praying for us.
Something is starting to bother me a little bit and I am not sure what to do about it yet. Asher appears to know what the various rooms in the hospital means and what doctors and nurses look like. When we get into rooms that he recognizes, he starts to get this defiant/mad look on his face and wont' look at us and doesn't appear to trust us.
He's starting to really be afraid, scared when they walk into the room, like they are all going to inflict pain on him. He was so mad today that he was poked to get an IV for the CT Scan and he cried/grabbed one of us each time a nurse walked into the room. We've tried to tell him what is going to happen there so that he is aware (no owies this time, just a small poke, they are just going to look at your bandaid) and will learn to trust us. We also learned about some sort of numbing cream (EMLA Cream) that may help Asher get through learning to trust us because the IV pokes won't hurt with the numbing cream on.
(EMLA is an anesthetic cream that numbs your skin. It's great if you need to have a needle stick for an IV, access your medi-port, or have an injection. It can also be used for procedures like spinal taps and bone marrow aspirations.
All you have to do is apply it to your skin about 1-2 hours before the procedure, cover it with an airtight dressing, and it will numb the area. You don't feel a thing (if you wait long enough). EMLA is only sold with a prescription.)
We do what we can to entertain him or distract him during the procedure, but it doesn't seem to be working all of the time, duh - he's 3.
Saturday is going to be a busy day. AT 9:30 we head to the hospital for an 11:30 surgery appointment in which they will move the shunt drain tube up a little bit because it's right up against an artery and could cause scar tissue (which in turn could cause a stroke down the line) and then they are going to put in one of those portoCath devices for chemo. They won't change what you see here, just where it feeds into the brain.
Asher basically can't eat anything prior to the surgery, so we kept him up until midnight tonight feeding him food, in the hopes that he'll be not hungry when he wakes up and will also sleep until it's time to go to the hospital.
Saturday is going to require sedation again so that they can do the surgeries and a follow-up spinal tap. The 10 minutes prior to sedation/anestesia is really hard on Asher and I normally bring him in and put him on the right apparatus so that it at least helps. But it's hard to see him get so upset and to not be able to do anything about it. It's good that he doesn't really understand, but sometimes I wish that I could say at least something to stop the tears.
We may get to come home "same day" if the surgery and sedation goes well. Asher always wakes up REALLY TERRIBLY from anestesia, so hopefully they can do a nice safe controlled wakeup.
Posted by Scott in
Scans, on Friday, June 23. 2006 at
Asher hasnt' been able to eat since 7am. Thankfully, Steph reminded me last night that I needed to wake Asher up at 6:30 and force feed him (well, my words).... so that he wouldn't be too famished since his scan isn't until 1. The not-eating part is always the hardest for me. It's hard to try and redirect when he's SOOO hungry.
Thankfully, Asher woke up enough to have a banana and be force-fed two eggos. He then slept until 10am, which made the morning go SO much faster.
I am bringing a bunch of toys with us today because I don't know how long we'll be there. WE're supposed to meet with the tumor team after the CT scan and that might take hours, or it might take minutes. I at least have a gameboy now for Asher to keep busy with. Thanks everyone for the games! Wish us luck today.
Posted by Scott in
Feelings, on Friday, June 23. 2006 at
Asher's bandage has been sorta coming off from the back of his head, so I've been reinforcing it to the best of my ability with those tegaderm bandages . He's finally getting us used to looking at/touching the back of his head, so he hasn't complained that much as I've been pushing on the decsision.
Tonight (Thursday) I mowed the grass.... In the Dark. Well... Not entirely in the dark, but the last two-thirds of it in the dark. We hadn't had the front yard mowed in over 2 weeks when the neighbors did it last. With Asher in the hospital last week, we just didn't get it done. Also, I felt bad accepting offers from non-neighbors for lawn mowing services. Besides, I was out of garbage bags for the grass.
Anyway, Normally, we have about eight 25/30 gallon bags full of grass when we are all done with the front, and today, there were 37. No, not all of them were FULL of grass, but they all had at least one lawnmower bag full of grass in them.
Back to the night mowing part. At about 7:30, I thought that I should go take a stab at starting the grass - at least get the edging done - because things were SOOO long that it was going to take a while. I finally finished the entire front yard at 10:15, including picking up all of the bags. So - For those of you who volunteered to Mow my lawn.... I should have let you!
So, what's my point to writing about mowing in the dark - well, it was pretty peaceful actually. Besides the occasional car driving by with their headlights on, I was by myself, in the dark, trying to see where I was going with a lawnmower.... and it wasn't so hard to do.
I needed peaceful. Lately, I've been feeling pretty detached. Some people have said it's depression, but I'm not sure that I agree with that word.... Actually, that probably IS the right word based on this definition -
"a mental disorder marked by altered mood, this may occur daily with the addition of diminished interest or pleasure in most or all activities"
Well, that's what's wrong with me. I am getting almost zero pleasure from any/all activities. I don't really want to play with the kids, I don't want to play on my computer, Nor reading, nor TV, nor games or even exercise. I just want to sit and stare at the wall when I get into a funk like I've been this week. Also, when I get like this, I start to snap at people and that's not so good for anyone.
Steph intervened today and previously this week so that I could go and have some "me time". For anyone lacking "me time", you absolutely must make sure that you get a serious periodic dose of "me time" because you'll go nuts without it. I had a problem though. Since nothing was going to make me happy, I didn't know what to do with my ME time. It's kinda silly, but I decided I was going to go shopping.
Shopping always makes me feel better. Actually - the shopping part isn't all that fun, it's the buying stuff part I like. I had hoped that I would make it to a "fun" store like Fry's Electronics, but ended up at Walmart instead where I was looking for the collectable die-cast cars from the movie CARS. We had just started filling out collection and I hit a gold mine at one of the stores today. This escapade stalled me from Fry's, but I'll make it there soon enough (since it IS right across the street from work basically) to get infrared security camera(s).
Buying stuff has always made me feel better in the short term. As long as I don't get carried away and spend thousands of dollars, it's been a 'harmless' activity that's generated it's share of 'trinkets' around my closets. I wasn't sure what I was going to buy today to make me feel happy, but maybe it would have been an Xbox360 or some other game that I'd never play. it's a good thing that I ended up finding a bunch of CARS to distract me. Also, I felt pretty satisfied that I found them so that changed my mood around.
Posted by Steph in
Blog, on Friday, June 23. 2006 at
I received a few emails from close friends asking about my online journal about Asher....
First I want to say that I started it thinking it would be the only way to update family and friends, and as the news was spreading, there were many people looking for updates. I thought Scott and I would have one blog and both post. Then I started one but he did too and it ended up being we both had one.
I can't even really begin to tell you why I have decided to not share it online, but I'll say I decided it during the night around 2am when Aubree was up, wide awake. I saw Scott's post about 'treatment protocols' and the 'Steven Bell Blog' and I clicked....probably my biggest mistake this week....
It depressed me....as if cancer isn't depressing enough. I didn't want this website to turn into a "memorial" some day. I didn't want complete strangers or even my mom reading about how I was really feeling but at the same time I wanted to be able to say whatever I felt at the time, without feeling guilty or someone saying I shouldn't feel that way. I want to remain positive and optimistic that my son will be in the 80% that get cured from this (although I don't really believe statistics matter). He is a fighter, and I am sure every kid is!
The biggest thing that affected me, that I read on a blog that night, and it was linked from the first one (I think I visited 5 that night), was the mom saying she had guilt....guilt about not being able to save her son's life and guilt about being on the computer when she could be with her son.
That's it, that is when I hit the delete key to my online journal. Wake up call for me! Going into my room on my computer or opening my laptop on the couch didn't feel good, didn't make me feel better....being with my son did and does! I am amazed at how good I can feel being near my son, even when he is in pain, telling him it is okay to cry or whatever it is he needs to do. I am there with him, for him, as much as I can. It was so hard for me to leave the hospital each night, but I knew Aubree needed me as did Alexa, even if it was during the night. Now my son is home, most of the time, and I want to be right there, with him, no where else.
You know, I don't want to cry right now, and I don't feel the need to, for the most part. I want to be focused. I want to fight this cancer. I want to go to bed when all the kids are sleeping so I can get as much sleep as I can. I don't want to be held by this computer and website. I have decided, even if I do journal, it will be for me and just for therapy, to get through my days when I can't cope with feelings, so I can sleep at night....if my mind is racing with thoughts or feelings and I can't sleep, I can type it out and then go to bed to get the rest I need to function the next day.
I am a perfectionist and wanted to make the site for everyone else, with great presentation, photos, and accurate info....now I realize this isn't about anyone else. This is about Asher. This is about my son, my husband, my daughters, me and our future. I am sure, unless you have or had a child with cancer, you can't begin to imagine how I feel right now and I have heard that some people don't want to know. That reading the journaling is too hard. That they just want to know the medical updates. That that is all they can deal with. I think that makes a lot of sense and maybe the most sense right now. I don't want to get others caught up in my emotions. I just want everyone that is willing to pray, to pray for Asher, for my son to not have to suffer or feel too much pain, for his strength and courage as well as our's, his family, those that must take care of him and watch over him and his sisters....pray for us all!
So with all of those thoughts going through my mind (they sound cluttered and messed up, don't they?) I hope you understand why I went private with my journaling. I hope Scott will still find the time to update all of you here in his blog when he can, but he returns to work next week and Asher goes to surgery this weekend and starts chemo shortly after....there is always a lot going on but I am sure he will post when he has time (and he types fast so that helps too!).
Thank you for your thoughts and prayers - God Bless You - Steph
Posted by Scott in
Scans, on Thursday, June 22. 2006 at
I'd rather not have Asher go through a 3rd operation to remove this little piece, but if I'm not mistaken 5mmx5mm = 2.5 cm^2 and almost all of the protocols for cancer treatment I've seen say that there must be 1.5cm^2 of residual tumor remaining.
I know that it's pretty impossible to predict the success or failure of a protocol based on a small amount of residual tumor, but if the dr's feel that it'd be better to get it out of there before adjunct treatment, then lets' get it out of there!
I'm really just hoping that it was a phantom and not tumor and that on the next MRI it won't be there.
Posted by Scott in
Chemotherapy, on Tuesday, June 20. 2006 at
Steven Bell Blog
Kathleen, his mother, wrote to me and mentioned the trial that he participated in because I had applied for membership to a yahoo group that she's a moderator of. That's what got me interested in looking at all of the clinical trials out there.
One of the problems with going out to do research, is that the internet is basically a black hole, a miracle worker, a yellow pages and a fire hose. Number one, it can suck the life from you because of all of the sadness and depression you read about. Second, you can be on top of the world because of all of the miracles and surgical successes and treatment successes that have been created out there. Third, you can get phone numbers and email addresses for just about any organization, business, or person that you need to contact. Finally, there's just too much information to absorb and too many big words that I don't know.
As part of my true character, I don't really generally trust people until they prove to me that they know what the heck they are talking about. I feel uneducated about this stuff right now and when we sit down to talk with the oncologist on friday, he's going to tell us all about radiation and Chemo and he'll use a bunch of chemical names and treatment plans and protocols and maybe weird dances we need to perform in-between. Prior to that, I feel that I need to know what's out there. What have people at St. Jude's been doing outside of their participation in the Childrens Oncologist Group (COG) that PCH is a member of. What have international people been talking about at the brain tumor conferences. Are there trials out there that will reduce any risk of long term neural side effects. It's a freakin' fire hose. Normally, I can sit and absorb the internet all day long. Wanna teach me something about computers - no sweat - hook me up and I'm there. I know those acronyms. I know those big words. I don't know these big words and it's making me angry. I need to be Lawnmower Man right now and be able to watch the 7 year neurosurgery course in one night. I need to be Johnny Mnemonic so that I can just suck data into my memory bank in my head. OR, I just need to learn a little and trust my son's doctors.
I know that I'll trust them ultimately. I think I just want to know what questions to ask.... How much will it hurt. What do I do to make him feel better. Does he need to stay in the hospital. How long, How often, How Much.
There's so much out there talking about new protocols, new treatments. Most of the time I think to myself. Thank God I live in 2006 and not in 1956. At least now, people have an idea of what to do about this sort of stuff.
I don't know if we're going to have to make a decision along the way to select a protocol that will weigh different choices. I'm hoping there will be a clearcut choice or recommendation. I don't want to have to choose between a lower dose of radiation and a probability of the tumor coming back but asher keeping all of his mental capabilities and a high dose of radiation and no tumor, but asher losing some mental capabilities. That's just not a decision parents should have to make, but sometimes, one they need to make. PCH seems to know what they are doing. They have talked very positively about the protocol they know they are going to use on this one if it was truly a Medulloblastoma.
It'd be a lot easier if Asher was 4 instead of 3, but he's not..... The brain is more fully developed at 4 and less likely to have long term effects. I'm tired.
anyway, the interesting protocols - more for my records than your research.
Intrathecal Radioimmunotherapy, Radiation Therapy, and Chemotherapy After Surgery in Treating Patients With Medulloblastoma
Radiation Therapy Plus Combination Chemotherapy in Treating Children With Medulloblastoma
Low-Dose Radiation Therapy and Combination Chemotherapy Following Surgery in Treating Children With Newly Diagnosed Primitive Neuroectodermal Tumor or Medulloblastoma
Comparison of Radiation Therapy Regimens in Combination With Chemotherapy in Treating Young Patients With Newly Diagnosed Standard-Risk Medulloblastoma (PCH Listed)
Combination Chemotherapy Followed by Second-Look Surgery and Radiation Therapy in Treating Children With Nonmetastatic Medulloblastoma or Primitive Neuroectodermal Tumor (PCH Listed - This sounds most like what they've hinted at so far)
Posted by Steph in
Home during Treatment, on Tuesday, June 20. 2006 at
We also tried to get him to have a bowel movement because he hadn't gone for 8 days now!! We thought maybe that was why he wasn't eating or feeling too well. I told Scott to use a child suppository and so he did and about 1/2 an hour later Asher acted like he had to go. What an experience this was, though! When he beared down he would clutch his head with both hands and all the muscles in the left side of his face squeezed real tight while those on the right didn't react at all....so he had this expression on his face that scared me so! I wanted to rush him right back to the hospital! He did have one bowel movement after that but the next time I tried to take him he said he was scared.
I'm scared too. I realized today that this was starting to feel real. That this is what I heard cancer was like. Before Asher never really acted sick for too long. The morning sickness and morning vomiting and occasional headache was all we ever noticed and even that was not much because Asher was so strong, fighting through those to be happy! When we heard the results of the MRI on May 26th, Scott and I said it didn't feel real because "Asher wasn't sick." I guess that didn't last long.
Of course we were worried about Asher so we called the doctor. Katie called us back and said the weak left side of Asher's face would go away (that eye lid also doesn't close all the way when he sleeps), that the cranial pressure goes way up when he bears down and he will get a bad headache, and that Asher would feel very tired since he had two major surgeries and it could last up to two weeks. She said to give "P" fruits (prunes, pineapple, peaches, pears) because they would make Asher want to poop. They had given stool softeners in the hospital but not soon enough, in my opinion. We will have to try the fruits and get a prescription filled for the stool softeners. I can't have my son in such horrible pain to use the bathroom.
Asher hardly wanted to eat or drink and he didn't want to play anything! He just lay on the couch watching TV or resting or napping all day. That's all he did and if he tried to do anything else, like sit up, he cried and said he was dizzy or he held his head.
I find I am a worrier now. I never was before. I never worried about a sniffle or little fever, throwing up or snot. Now I do. I worry about my son every hour now. I don't like that I have turned into a worrier!
I put Asher to bed tonight, tucking pillows around him in his bed to get him comfortable. Then I sang to him and he drifted off very quickly. Tomorrow is another day. We take them one at a time.
Posted by Scott in
Home during Treatment, on Monday, June 19. 2006 at
He seems to have a constant headache from the built up pressure in his head, and he's REALLY tired. We were worried enough that we called the doctor office just to check to make sure everything was okay.
What they told us was this.
a) It's okay if he's tired for a couple of weeks because he's just been through two major operations. Most adults are even tired for a couple of weeks recovering from the anestesia and you can imagine what it will do to a child
b) The pressure will build up in his head due to crying or pushing to have a bowel movement. The shunt should take care of it, but it will give him a headache until the pressure goes down. As long as the pressure goes down, it's okay.
c) He's got pain in his right side, and his eye won't close all the way. That's also okay short term due to the shunt and pressure that was being put on his head due to the tumor. it should go away as his head recovers inside.
I hope that now that he's getting some rest, he'll be able to play a bit, because starting next week, he probably won't feel very good with the Chemo.