The Starfish Project

The combined effort of our whole family.

Archive for January 2009

We’re Getting There!

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Well, we’re still here in the hospital.  We’re trying to coordinate her release – but there are so many things that have to be arranged that we’re kind of pulling our hair out.  We need a shower bench so we can bathe her at home.  We need a transfer slide board so we can transfer her from the wheelchair into her bed and into the car for doctor’s appointments, and we need a rolling commode that can be rolled over the toilet.

We are trying to arrange a special transport home for her so she can ride in her wheelchair rather than having to transfer between the wheelchair and car seat.

Her doctor ordered some home nursing and physical/occupational therapy so she can get back to her old self within a few weeks.  As the Decadron gets out of her system, she’ll be able to do more and more – until she’s 100% again.

She’s had her lunch and she’s just awaiting her chariot so we can go home.

I’ll let you know when she’s home.



Written by Tracey

January 31, 2009 at 2:58 pm

Posted in Updates on Mom

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Weesa Goin’ Home (1/30/09)

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Mom is doing well today.  Several doctors came by and looked at her thumb and they all agreed that it looked better to them.  Still, we need prayer because we’re not out of the woods on this yet.

Everything is looking pretty good for Mom except her platelets are still a bit low.  No one is really sure why.  They’ve cut back on her meds and we’ve stopped giving her any of her “at home” alternative meds and we’re just waiting to see what happens with that.

However, they feel comfortable discharging Mom tomorrow and have scheduled her Gamma Knife surgery for next Tuesday.  So, while we’ve waited a very long time for this, we’re very excited to finally have it happen next Tuesday.  Better late than never, huh?

One of Mom’s fantastic nurses, Sarah, brought in a water-heated pad to keep under Mom’s arm and hand to keep her thumb warm.  It’s working great and so much better than just changing out warm blankets every hour or so.  This works all the time to keep her thumb warm all day long.  I’m not sure why no one thought of it before Sarah came on shift.  But, we’re grateful to her for bringing it in and letting Mom use it.  It’s helped a lot.

[Note to Judie:  Mom’s vascular surgeon didn’t come in today, so I couldn’t ask about the hot/cold treatments.  I’ve used it in other things when I’ve needed to move the blood along, but I’m not sure it would work in this instance.  They don’t want her thumb to get cold ever.  Even when she showered today they didnt’ even want cold water to touch it.  But, I will ask him when we see him next about the alternativing hot/cold treatment.  Thank you so much for the suggestion.  I hope you’re doing well and your hand is healing up nicely.]

Mom’s main doctor said he thought it would be okay to bring her home tomorrow and let her recover a bit more at home until her Gamma Knife surgery on Tuesday.  We are all very excited to have her back home again.

Her neurosurgeon has also lowered her Decadron dosage to 4 mg every 8 hours (it was at 4 mg every 6 hours).  This will continue to be lowered until she’s off of it completely in 5 weeks.  We are most thrilled about that.  I’m convinced that Decadron is the most insidious drug I’ve ever seen.  It’s probably really great for short-term usage, but being on it this long (which was caused by her primary care doctor’s delay with getting the referral cleared with the insurance company) has devaastating effects on a person and on their family.  If you’re out there and you’re reading this and considering taking Decadron, please make sure to move quickly to resolve your brain issue so you can start to wean off of it quickly.  You definitely don’t want to be on this stuff long-term.  I’ve heard it referred to by spouses and children of patients taking it as “The Boss Pill,” the “Insidious Drug,” and “THE DRUG.”

Mom’s wonderful physical therapist, Al, came in and saw Mom today and recommended some equipment we can get for the house that will make it easier for us to care for Mom during her recovery.  He was really encouraging and said he’s seen this type of steroid-induced myopathy before and that Mom should have significant improvement in 3 or 4 weeks and could be fully recovered in 6 weeks.  So, that was very exciting to hear.

Mom is very weak right now, so I know it probably seems impossible to her that she could be up and around again in just a few short weeks.  But, hospital stays definitely take their toll on the physical body and we often feel worse just being here than we do once we get home and start to recover.  This will be an 11-day hospital stay for her and that has certainly taken its toll on her.  However, I think Mom is going to make a wonderful recover and I believe her thumb is going to completely heal, as well.

Mom is an anomaly here.  Everyone who cares for her asks her questions about her treatment.  They can’t believe she’s never done any conventional cancer treatment.  Many of them have loved ones who have cancer, so they’ve been extremely interested in getting information from Mom about what she’s doing and who her Naturopathic Medical Doctor is.  If you’re in the Phoenix area, Dr. Jason Porter is Mom’s doctor and you can see his website at:  He’s fantastic and even called me back last Sunday when I had a question about Mom.  If you’re looking for a good Naturopathic doctor to treat cancer and you’re out of state (and not in a state with good Naturopaths or any) he would be a great choice.  We have nothing but wonderful things to say about him and the treatment he’s given Mom.

So, as it stands right now, we’re looking at busting Mom out of here sometime tomorrow.  If that happens, I’ll post tomorrow night once we have her home and situated.

We’re so excited to have her home for Superbowl Sunday so we can watch the big game (Go Cardinals) at her house instead of in the hospital!!

Thank you all so much for leaving her comments on the blog.  She has really enjoyed me reading them to her here in the hospital.  I have my laptop here and the hospital has wireless – so I’ve been able to keep up with the blog while I’m here.

I think that’s all the pertinent stuff.  Until tomorrow…


Written by Tracey

January 31, 2009 at 12:05 am

Thumbs Up & Thumbs Down — The Waiting Game

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Well, Mom is still having some fits with her thumb.  They came in and did a Doppler ultrasound of her right neck and all the way down her arm to her thumb.  The blood flow was really good up top and even below the elbow.  but as soon as they got to the wrist and thumb, the blood flow was pretty poor.

So, again, the mad scramble was on and doctors were called, nurses were rushing around, and I was getting pretty concerned.

First, she saw her internal medicine doctor.  He was very nice, but didn’t really know much about the thumb issue.  Then, the vascular surgeon came in to see her and he was very nice.  He basically told us that it’s a wait and see situation.  He didn’t feel that doing an additional surgery would benefit her at this point and that we needed to wait and see.  The tip of her thumb is still warm (meaning it’s getting some blood flow) and it’s not a solid black color.  It’s kind of a mix of purple shades.

Here are some pics of her thumb and hand so you can see what she’s dealing with right now:


















So, we’re going to be doing a lot of praying and a lot of visualization exercises about the blood flowing into Mom’s thumb all the way to the tip.  If you’re one of our prayer warrior friends, we ask that you please pray for this too.  Now, we just get to stand back and watch God work.

Until next time …


Written by Tracey

January 28, 2009 at 6:05 pm

Update on Mom’s Thumb

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I just spoke with Dad and he said the vascular surgery was a success.  The color has returned to her thumb (except for the very tip), but the doctor thinks that will heal up too.  They found one large blood clot and several smaller ones and removed them.  Her hand is a little swollen, but she’s doing so much better.  Dad said she’s resting comfortably and they’ve been giving her a little bit of morphine for the pain.

Man, we just never saw this one coming.  We noticed that her thumb was a little discolored yesterday and mentioned it to the nurse.  But, her nurse said it was just from poking her fingers to check her blood sugar.  The Decadron makes your blood sugar go up and she’s had to receive insulin a few times.  Her blood sugar was 240 on Monday night and they gave her six units of insulin.  And, it was 146 yesterday afternoon and they gave her 2 units of insulin.

But, when we thought about it, they never poked her thumb to take her blood sugar.  I’m just glad they were able to do the surgery right away and save her thumb.

Okay, I’m getting in the shower and getting ready to go back to the hospital and relieve Dad.  Our plan is for her to have a wonderful and restful nights sleep so she’ll be ready for the Gamma Knife surgery in the morning.  She’s on the schedule for 7:00 AM.  It takes a while because there are many different steps they have to complete for the procedure.  They have to bolt the frame onto her skull.  She will have four screws that go into her skull.  They say this doesn’t hurt – it just feels like pressure when they’re doing it.  Then she has to have an MRI done of her brain while the frame is attached to her head.  Then the doctors will look at the MRI and make a plan for the actual Gamma Knife procedure.  They have to have a scientists on the team who will determine the angles of the gamma rays.  Then, she will be put into the Gamma Knife machine and the frame will be attached to the machine.  The actual procedure takes about an hour – about the same amount of time as an MRI.  Then, they remove the frame from her head and she’ll be under observation for a few hours.  Then, she’ll be sent over to their rehab part of the hospital to work on some physical therapy.

So, that’s our day for tomorrow.  I hope and pray everything goes according to schedule.

I’m bringing my laptop with me to the hospital this time, so I can update you all much more quickly.


Written by Tracey

January 28, 2009 at 10:05 am

Please Pray for Mom

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Dad just called me from the hospital a few minutes ago and told me that Mom’s right thumb has turned black and she’s in a lot of pain with it.  The doctor sent her down for an MRI and it was determined that she has several blood clots in her arm blocking the blood flow into her thumb due to the arterial line they placed in her arm.

As we speak, they are prepping her for surgery with a vascular surgeon to get rid of these blood clots and open up the blood flow into her thumb.  The doctor said he thought there was a 60% chance he could save her thumb.  We know that with prayer, those chances go up significantly!

As you can see, this is very serious.  So, our family is asking everyone who reads this to please pray for my Mom that the surgery is a success and the circulation is restored into her thumb.  We have not come this far with her cancer treatment to be derailed by something like this. 

As always, thank you so much for your prayers and positive thoughts.  You guys are the best!


Written by Tracey

January 28, 2009 at 12:45 am

Update on Mom (1/27/09)

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Mom is still in the hospital, however she has been moved from the Neuro ICU up to the regular Neuro floor.  Her new room is very nice and is much more conducive for the rest of us.

Since she’s not on the telemetry floor, she’s lost most of the tubes and wires that have been connected to her since last Wednesday.

Her Gamma Knife surgery is on the schedule for Thursday (1/29/09).  So, she’s working with physical therapy to get a little stronger before her Gamma Knife treatment.  She’s still having a difficult time using her legs and she seemed particularly tired today.  I’m not sure why.  Maybe just changing floors late last night and being in a different room has thrown off her schedule and increased her fatigue.  I’m not sure, though.

She’s eating well, but her sodium is running a little low so she’s not been able to drink any water, coffee, or tea for the past six days or so.  Apparently, drinking these things reduces your sodium.  She is drinking orange juice and V8, but is really hoping to have some herb tea soon.  She’s missing that a lot.

I think that’s about it for today’s update.  She’s looking and sounding great.  We just can’t wait until the Gamma Knife surgery is done so she can get back to normal again and start living life to its fullest.

Again, thanks so much for your thoughts and prayers for Mom.  We all really appreciate them.

Written by Tracey

January 27, 2009 at 5:16 pm

Update on Mom – 1/25/09

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Well, I think we’ve come through the valley and are coming out on the other side.  I just got back from the hospital and Mom is doing just great.

When I go there yesterday morning around 9:15 AM, they had just removed the ventilator tube and she was breathing on her own again.  She was very alert and said she was hungry.  So, the nurses said we could order up some food for her from the hospital kitchen.

Trying to eat a proper “cancer diet” in the hospital has been difficult in the past, but with Barrow Neurological Institute they allow you to order what you want from a menu.  So, Mom has been getting lots of fruits and veggies and some chicken and fish too.  She hadn’t been eating much meat, but since it’s a little too difficult for us to try to make protein shakes for her in the intensive care unit, we decided to just go with a little chicken and fish.

Mom ate a good lunch and dinner last night.  I think that made a world of difference for her.  Plus, Dad had cut up some organic pears and some organic veggies and brought them for her from home.  She gobbled those up while waiting for lunch yesterday.

She was slightly anaemic yesterday afternoon, so the doctor ordered two units of blood and she received those during the afternoon and evening yesterday.  Her color did “pink up” a little bit after that.

Her nurses have been the best we’ve ever had.  They are all so caring and nice to Mom (and to the rest of us too).

Mom had a great night’s sleep last night.  She took little cat naps throughout the day yesterday, and then slept for six hours straight last night.  That might not seem like a big deal – but getting a stretch of sleep that long in the hospital can really be a miracle.

She wasn’t aggitated at all during the night and she slept like a baby until 6:00 AM this morning when one of the doctors came in to do a neurological evaluation of her.  She passed with flying colors.

She’s been in good spirits all day today.  The doctors are a little concerned about the platelets in her blood and are changing her anti-seizure medicine to see if that will correct the problem.

She’s slated to be moved out of the Neuro ICU and into a regular room later today – that is if the doctor feels that the platelet issue is resolved.

At this point, we’re going to believe that Mom is going to be right on schedule for her Gamma Knife treatment next Thursday – so she can be home in time for the Cardinal’s SUPERBOWL game!!  Go Cardinals!

I’m going back to the hospital tomorrow – so, I’ll post a new update when I get home.

Written by Tracey

January 25, 2009 at 5:55 pm