Short intro about the blog

This blog is about our journey to healing with Grade 3 Anaplastic Oligoastrocytoma

Friday, March 23, 2012

The Schedule

I've finally found a few minutes to update you all on our daily goings-on at home.  Things have been very hectic, but manageable.  It took a couple of weeks to settle down and get into a routine, and there are times of the day which are absolutely horrible, but overall it's not too bad.  Luckily, I can be very anal, and I do love schedules and flowcharts.  I'm very big on making spreadsheets and charts for just about everything.  I love to plan.  Not that everything always works according to said schedule, but it does help.  I've had to up everything to a whole new level, however.  I never used actual times of the day in which to slot everything in, we just had basic routines that we followed.  But, now I'm a scheduling master, and everything has it's time slot.  It had to be done.  I was forgetting really important things like bills, medicine refills, gettting Adam hooked up to his pump in time for his first dose, etc.  So I wanted to share with you what our typical day looks like at the McArthur household!

6:00am - Mummy wakes up and tries to fit in 30 minutes of exercise, often with at least one child underfoot
7:00am - Disconnect Daddy from pump (while Daddy is still asleep!)
7:15am - Lay out breakfast and supplements
7:30am - Kids and Mummy eat breakfast
7:45am - Mummy makes Daddy's breakfast
8:00am - Wash dishes, give Ali medicines, dress children and Mummy makes herself look human
8:30am - Draw blood (Daddy should be awake and fed by now) and prep medicine bags
9:00am - Program pump and reconnect Daddy in time for first infusion at 9:30am, filter water
9:30-10:30am - Take blood to lab, or tackle To-Do list (laundry, bills, phone calls, make veggie juice, etc.)
10:30-11:30am - Do something with kids (park, library, Lego, puzzles, etc.)
11:30am - Prepare lunch
12:00pm - Eat lunch
12:30pm - Wash dishes, give Ali medicines
1:00-3:00pm - Finlay naps, and Calum and Ali homeschool
3:00pm - Wake up Finlay, prepare snack for kids, give Daddy enzymes
3:30-4:00pm - Free time!  Mummy lies unconscious on sofa while kids watch TV or play on computer
4:00pm - Make protein shake for Daddy, give Ali medicines, prepare dinner
5:30pm - Eat dinner
6:30pm - Wash dishes (or Jatta does it if she's here)
7:00pm - Disconnect Daddy from pump, give Ali medicines
7:30pm - Kids bath, ready for bed
8:00pm - Lights out for kids, Mummy showers or Daddy has bath (we alternate nights)
8:15pm - Mummy checks emails, makes soups/soaks beans, preps medicine bags, filters water
9:00pm - Reconnect Daddy to pump
9:30pm - Enzymes for Daddy, Mummy does a bit of stretching/yoga to wind down
10:00pm - Mummy and Daddy go to bed

Meanwhile, Adam tries to work as much as he can, complete with twice-hourly potty breaks and through crippling fatigue.  He takes breaks throughout the day and tries to nap here and there on the sofa.  At first, the kids were spending a lot of time on the Wii and in front of the computer, but that has died down a lot.  I'm glad to see Calum spending more time sketching Pokemon characters, and Ali playing Legos.  Finlay just wanders around destroying everything, and occasionally plays with toys.  Needless to say, the house is a bit of a disaster.  I know that I'm supposed to be vacumming the carpeting, and regularly changing the sheets on the beds, but I'm going to have to wait until Adam is finished with the treatment before I'll be able to do any of those sorts of things again.

Well, my 3:30-4:00pm opening is over, so I've got to go make Adam's protein shake.  I skipped my nap for this!

Thursday, March 22, 2012

A Cause for Celebration

Sorry everyone, I just don't have much time to post these days!  We got the official results from Adam's first follow-up MRI since starting antineoplaston treatment.  The radiology report indicates a 40% decrease in tumor size!!  This is incredible news, and we are so grateful for such a quick response to the treatment.  We are praying for "NVT" (no visible tumor) on the next MRI.  It will probably be in 6 to 8 weeks time.  And that would be following the timeline that Dr. Burzynski predicted.  All I can say is, thank you God for the Burzynski Clinic.

Friday, March 16, 2012

Looking Good

We just received a call from Dr. Barbara.  The radiologist still has to do a few more measurements, so he cannot say for sure if the tumor has shrunk.  However, there is considerably "less enhancement" in the tumor.  This means that there is less activity, and the tumor is showing up less dense on the MRI than before.  That explains why it is so difficult to see in the image.  All good news!!!  Dr. Barbara said, "Geeve Aatum beeg hug frum mee and goa celebrate!"  And so we shall.  A big ol' sugar-free alcohol-free celebration.  Hmmmm.  Just what are we going to celebrate with??  I know... carrot sticks!  Yee-hah!!

Thursday, March 15, 2012

Adam Has a Brain!

The MRI results are in!  Well, not exactly, because I'm not really a radiologist.  But, I couldn't help but sneak a peak at the images before we overnighted the disc to the clinic.  I'm just a little bit excited, because to my untrained eye it looks kinda good.



The top two images are from early February taken at the Houston Imaging Center.  I won't show you the pre-op images, because they are just too darn scary.  Anyway, you are looking at Adam's brain, but flipped around so the cavity looks like it's on the left side, but actually resides on the right side of Adam's head.  That big black hole on the left bottom is the cavity remaining after the humongous tumor was removed.  That cavity will probably always be there.  It's actually much smaller now than it was immediately post-op, but I don't think it's shrinking anymore.  In the top two images you can see a lot of angry white stuff around the rim of the cavity.  That is swelling/fluid, and most likely a result of the body trying to repair itself after the surgery.  However, in the right hand image, there is a little ball of really bright white matter on the right side of the cavity that Dr. Burzynski said is a recurring tumor.  It's roughly the size of a chickpea in real life.  The two images below are from today. So you can compare top-to-bottom.  A lot of the angry white stuff is gone.  It looks like there is less swelling and/or fluid around the cavity at this time.  And (drumroll, please) you can see in the right-hand image that the really bright white ball of tumor appears to be gone.  I could be misinterpreting the images, but I couldn't help but get really really happy when I compared the old images with the new.  There really is a change, and it looks like it's definitely for the better!!

The disc should be in the hands of the radiologist tomorrow, so hopefully we'll have a more professional interpretation by the weekend.  Adam is still feeling good, and we are getting the hang of this whole cancer-treatment-thing.  Thank you so much to all of you who have brought meals and are helping with blood transport and getting Ali to his therapies.  I honestly don't know if I could do this without you.  By about 3:00pm, my body powers down for the day, and I'm a useless lump on the sofa for at least an hour.  And I'm a woman who NEVER sits down.  Knowing that I don't have to try to prepare dinner is an absolute God-send.  My mother is helping with dishes and laundry, so we are actually able to keep on top of those.  And the first week of blood-runs went off without a hitch.  We're moving forward, and it's all good!

Wednesday, March 14, 2012

Waiting for the first MRI

Adam has his first MRI since starting treatment scheduled for 8:00am tomorrow morning.  I'm a little anxious about the results, but Adam is totally Mr. Cool about it.  I don't know how he can be so calm.  He just *knows* that it will be a good result.  To be honest, I also have a really strong feeling that things are going to be fine, but I still have that nagging part of me (we'll call her Little Miss Negative) who worries that after tomorrow everything will suddenly change for the worst.  Usually, I'm the one with the stronger faith, but throughout this whole cancer journey, Adam has been lifting *me* up.  It should totally be the other way around, but it is what it is.  So, watch this space... I'll post a post-scan update as soon as possible!

Thursday, March 8, 2012

Teamwork Makes the Dream Work

A lot of people have asked me this week how they can help.  I am horrible at accepting help, and even worse at asking for it.  On the extremely rare occasion that I have secured some help, I'm terrible at delegating.  That is the main reason we no longer employ aides for Ali!  Anyway, I've been giving our current situation a lot of thought, and I've been pondering some excellent advice I was given by a mother of a boy receiving the same treatment as Adam.  This time I really do need help.  And I shouldn't be ashamed or feel guilty for asking for it.  Sure, I am able to cook and clean and do laundry, but I really *shouldn't* be focusing on those things right now.  Adam has to get better.  Unfortunately, he also needs to work.  In order for him to focus what little energy he has on working, I have to do everything else for him.  That means all of his medical care and a lot of his personal needs.  Also, the children need me.  Ali needs medications 4 times a day, he has 3 therapists, and needs more help than the average 6 year-old with daily tasks.  Also, Finlay has developmental issues, a speech therapist on Wednesdays, and the normal demands of a 2 year-old in nappies.  Not to even mention my only neurotypical child, Calum, who we homeschool.  With all these exceptional circumstances in one household, that means I'm pretty much stretched out to the limit.  Even if I find myself on the odd occassion with spare time and energy, I should be spending that cuddling up with my boys on the sofa, playing games with Finlay, talking with my wonderful husband, or just plain reading a book with my feet up.  I have to keep convincing myself that it is okay to pass the baton to my amazing caring friends and family so I don't end up cracking and crumbling into a shattered mess two months down the road.

So, having said all that, I have decided to post a list of things that I'm anticipating needing help with.  My lovely in-laws are leaving tomorrow, so I'll be on my own as of this weekend.  My hope is, that by posting a list of "responsibilities" those of you who want to help can sign up for whatever tickles you.  You can email me at or send me a message on Facebook and let me know what you would like to help with. 

I would love to start having dinners brought as soon as possible.  As many of you know, we are on a gluten- and dairy-free diet.  To add another complexity to the mix, Adam is now sodium-free.  He has to avoid salt to keep his already faltering potassium levels as high as possible.  So, obviously, no table salt, soy sauce, seasoning packets, or anything processed.  Canned beans and vegatables are okay if rinsed well.  And I've been pleasantly surprised by how many low-sodium and sodium-free items there are out there.  We scored some sodium-free ketchup today, and Adam is so excited!  Another challenge is the thrice-weekly blood runs to Winchester.  Adam has to have his blood tested every Monday, Wednesday, and Friday.  I've been trained to draw the blood at home, but the tubes need to be dropped off at the Diagnostic Center at Winchester Medical Center.  I usually draw at 8:30am, and they have to be in the lab's hands by 10:30am.  I can do it on Mondays, because I can tie in our weekly shopping trip to Walmart at the same time.  But, perhaps a babysitter for Monday mornings could be helpful.  On the other days, if anyone is able to take a day to deliver blood/urine samples to the lab, that would be great.  One other issue is Ali's weekly therapy sessions at Berryville Primary.  Mornings here are really hectic with bag changes, pump programming, dressing changes, not to mention Ali's medicines.  If anyone would volunteer to pick up Ali on Thursday mornings (he needs to be at the school at 8:45am), and bring him to the school it would be infinitely helpful.  He has PT, Speech and then OT and is done at 10:15am.  I can probably pick him up, or if someone else was able to pitch in with pick-ups, that would be awesome.  I could also use someone as an emergency mid-week grocery shopper.  It's inevitable that before the weekend I'll run out of half-a-dozen things and need to run to Food Lion to get them.  If one or two people wanted to sign up for those random Food Lion runs, that would be fantastic.  I can provide Food Lion gift cards to pay for the items.  Finally, help with laundry would be appreciated.  I usually wash about 2-3 loads of clothing a week.  With Adam working at home, and homeschooling, we wear the same things for several days in a row before washing.  So, laundry is pretty minimal, but I won't be able to get around to it regularly.  If anyone would like to be a laundry helper, you could choose a regular day to collect a load or two once a week.

So, these are the most glaringly obvious challenges that I can see in the coming months.  Please contact me if you can help, and if you aren't local or aren't otherwise able to help, prayers are always appreciated!  Adam has his first MRI scheduled for next Friday, and we are already getting nervous about it.

Monday, March 5, 2012

The New Normal

We're here.  We're back home.  We made it.  Three exhausting days of driving finally over.  Now the fun begins!  We've spent the better half of the day driving around Winchester, filling prescriptions, returning the rental car, and trying to find a lab to do Adam's thrice-weekly bloodwork.  Thank God for Winchester Medical Center.  I never thought I'd be putting those words together in one sentence.  But, the people at the Diagnostic center were great this morning.  I can draw Adam's blood at home myself, and just drop in the tubes every Monday, Wednesday and Friday.  Labcorp wouldn't do it.  Some crap about liability, yadda-yadda-yadda.  But, WMC... no problem.  And they set up an account for us, so we just get a bill once a month.  Fantastic.  Unfortunately with all the hubbub this morning, I had forgotten that Adam needed to be off his pump for at least 1 1/2 hours before drawing blood.  So we disconnected, ran some errands, had some lunch (so not easy to do when one is on a sodium-free/gluten-free diet), and went back to the hospital.  Then I realized that I'd left the house without a single syringe, so they had to stick Adam anyway to draw blood.  Poor Adam.  At least they gave me a bag of vials and urine containers, so from now on we just get samples in the privacy of our own home.  I know this will be easy once we get the hang of things, but man this is a steep learning curve.  This morning's bag change was a debacle.  I got everything out to start prepping bags, but couldn't find any flushes, so I ran upstairs to hunt through the massive box of supplies that now takes up the entirety of Adam's office.  I found a flush, ran downstairs, and the medicine bags were missing off the dining table.  Finlay had decided to "help" and had put the bags back into the box in the living room.  I found him methodically taking bags from one box, transferring them into another box, and back again with absolute serious precision.  My big helper.  We finally got the bags prepped, Adam bathed, pump programmed, and hooked back up again an hour later than scheduled.  Oh well.  He also had to miss a dose because of the bloodwork adventure, so his treatment dose will be a bit off today.  Adam's been wearing his Camelbak today for convenience, and safety as it keeps all the tubing on his back instead of hanging down by his side where little children could run past and get tangled up.  Ali thinks Adam is now Ironman and insisted on having an Ironman pack like Daddy.  So, he's been running around with his Toy Story backpack on, complete with extension cord hanging out the side.  I love it.

Thankfully, Adam's parents are hanging around for a few extra days before going back to London.  I haven't been able to prepare food, give Ali his medications, clothe the children, nothing.  I'm terrified of what it's going to be like when they leave us at the end of the week.  You may find my children roaming the streets of Berryville in tattered clothing, dirty faces, and searching dumpsters for food.  If you see them, please only give them grass-fed meat or organic produce.  We must keep up our standards, you know.