Deb Here!  (A.k.a Ella’s Step-Mommy)

A few days ago Glen, Alycia, Ella and I went back down to Kaiser Oakland to review Ella’s recent MRI results with Dr. Kim.  The scans show that Ella’s brain is healing, and shows no signs of cancer.  GREAT NEWS!!! 

We are all still decompressing from the stress that built up leading to the results.  She has been making such great progress and the unknown was very scary. 

She will continue having regular MRIs for the next few years to monitor her progress.  At this time, there are areas that still show trauma, and only time will tell how those areas of the brain will heal.  Science and technology are amazing.  It was so interesting to see the MRI scans from last August, September, October and then compare those scans with her scan in February and her most recent one from last week. 

The progress this little 7 year old is making is AMAZING!  And she’s not so little anymore, this girl has grown.

Ella has been keeping us busy.  She has been splitting her time between her Mom & Daddy Marks home and our home here with Daddy and Deb.  I will say it again, Thank you to Alycia (Mom) and Dad (Glen) for being ‘on demand’ 24/7 when Ella is at the respective home.  Us step-parents get out of the home for our full-time jobs, and try to help as much as we can when we are home.  Alycia and Glen are AMAZING PARENTS and their strength keeps me going. 

Ella works very hard each day to relearn how to use all of her muscles.  Her ankles & legs are getting stronger, and with assistance she is able to stand, and take steps.  It’s been almost five months since we brought her home from her five month stay in the hospital.  She now can sit up on her own and even scoot across the floor on her own. 

Ella still has the g-tube, but only for additional water intake.  I am pleased to report that she is ‘eating’ all of her food, and drinking the majority of her liquids.  The g-tube will stay in until this fall. 

She is still wearing her eye patch.  It gets switched back from eye to eye to strengthen her eyes, and hopefully help reduce her double vision.  I need to sew more eye patches, so she can color coordinate them with her stylish outfits.  She LOVES purple, she loves pink too – but I think she has more fun teasing her dad (Glen) about how much he ‘loves’ pink.  Luckily Ella still has her witty personality and jokes often.

Ella & Glen have been trying to convince me to get a new pet bunny for the home.  I think our home is full & tending to her, our other pets, the land and our 13 chickens, well…  We were out visiting with some friends, one who has a bunny.  Ella says in her sarcastic tone ‘Deb loves bunnies, don’t you Deb’ – I looked at Ella puzzled, and then see Ella start laughing and reach behind her to give her Dad a ‘high five’.  She really got me.  That kiddo has timing and her sense of humor (atleast dishing out the jokes) has only gotten better in the past few months.  She is hilarious.

We have taken her out on a few short trips recently.  The Petrified Forest, the Geyers, The Exploratorium, CA Academy of Sciences (just Daddy & Ella) and then most recently… Monterey Bay Aquarium, where we also had Ella’s first (and successful) swimming experience in a year.  She LOVED being in the pool, and got very sad when we had to leave to go back to the room.   We are home now, and have recently taken her to a local pool for exercise and fun.

Back to Monterey Bay Aquarium… It was great!  Glen and Ella battled about which would be cooler to see, the penguins or the otters.  We got to see both.  Don’t tell Ella, but my vote is for the otters.  They are amazing little creatures.

The trip was very memorable and enjoyable; and we look forward to going back when the jellies exhibit is open.

We will be working this summer, not only to get her physically back on track, but getting her ready to start school.   She will continue weekly with her physical therapy sessions, occupational therapy and speech therapy.  We are working with Ella on reading and her writing.  She loves to draw, it’s now time to start working with getting her prepared to start school in August.

Thank you for all of your love and support.  We have been busy, but we will continue to update the site to keep everyone updated on the progress Ella is making.

Thank you again,

The Stewarts

Deb here to share positive updates…

Thank you to each and every one of you for all of your continued support.  We are so thankful to have Ella home, and apologize for not keeping you updated on her progress.  We all have been so busy with our new routines.

It’s been almost 3 months since we have had Ella home, and that time has flown by.  The progress she is making amazes us daily.

Over the past few months Ella has been eating yogurt, bananas and soft foods but getting the majority of her nutrition from blended whole foods that we feed her through her g-tube.  About a month ago she started eating bites of turkey sandwiches (one of her favorite foods) with tomato soup.  She now eats orally most of her daily intake of food & it seems as if every hour she is saying, “I’m hungry” (which we LOVE hearing).  From peeled slices of fruit, to eggs and pancakes, this amazing child is starting to have normal diet again.  Ella is able to use utensils  to feed herself.  Sometimes it gets quite messy, but we’re so happy with the progress we’ll deal with the mess.

Alycia took Ella back to Kaiser Oakland last week where they conducted a series of tests watching Ella swallow food & liquids.  She coughs a bit when drinking water, so we have put down the sippy cup for now.  She will build up her throat muscles by drinking through smaller straws and working her way back up to normal drinking.   At this time she isn’t capable of getting enough fluids orally.  We give her water boluses, through her g-tube, several times a day, and also feed her fresh organic veggies that we juice at home for her daily.

Ella’s hand-eye coordination is improving.  She is still wearing a patch over one eye.  She has double vision, especially when she looks at anything more than two feet away.  We realized while reading books the other night that she can see the pictures in the books better without the patch on.  Ella is drawing daily and her drawing is getting better and better, and the content of her drawings are heart warming.  She loves drawing hearts, birds, fish – A few days ago she drew a scientist that makes machines.  Fantastic!

Ella’s speech has improved.  For outsiders it may be difficult to understand all her words at first, but she is talking up a storm like no time has passed.  She is also singing and laughing everyday (which is wonderful to hear and for awhile months ago we thought we may never hear those joyous sounds again).  She does get frustrated each day, which is understandable.  The goal is to explain to her as much as possible and remind her that she is getting stronger and that with her hard work she will able to do the things again that she once was able to.

Ella will continue with speech therapy, occupational therapy and physical therapy.  Each week is very busy with doctor appointments and therapy appointments – and all of the exercises we do with her at home.  Ella is splitting her time between Daddy & Deb’s home here in Sebastopol and with Mom & Daddy Mark in their new home.

The doctors say that Ella has 12 months from the time she ‘woke up’ in December to make any progress she can.  After 12 months statistics show that progress plateaus.

She is getting stronger each day.  Sitting up on her own daily has helped build her core muscles.  She has learned to use her hands to help balance her if she starts to fall.  She now has the proper ankle braces that allow her to put her weight on her feet when she stands.  Typically when we have her stand, one of us parents stands behind her with our arms under her arms, but Ella is taking the actual steps and getting her legs moving again.  Glen made pancakes the other morning and spelled out Ella’s name.  She loved it and then she ate it, and then she loved it even more!

Well everyone, it’s been a little over a month since we last posted an update.  We’ve been working hard on a new routine with Ella home, it’s been a struggle to say the least, but we’re feeling more and more comfortable every day.  Ella as well is settling in, I will say much better than the four of us parents.  To her there are only two concerns, we hear “when do I go back to school?” and “what’s for lunch and then what’s for dinner?” about 50 times a day.  We’re hoping to get her back to Live Oak Charter School in Petaluma, in the fall, we’ll be speaking with them next week.  As far as the food goes, she knows she’s still on a G-Tube and won’t be eating full meals, orally, for quite some time.  This however doesn’t prevent her from dreaming out loud, and we try to answers those dream/wishes the best and safest way possible (with a little sneaky food now and again).

Today was a very important day for Ella.  Last week she had another MRI to see if there was any new tumor growth.  The results were given to us today at Kaiser in Oakland in a meeting we parents and Ella had with all of Ella’s amazing doctors.  The results are very good, as of right now there is no new tumor growth.  Ella will have an MRI done every three months for the next year and a half, if the results are the same each time, she’ll move to having it done every four months, then every six months, then every year, for the rest of her life.  There is no way anyone can say for certain, that Ella will never have brain cancer again, and due to all the CT scans and X-rays she has received, there is an increased risk of her developing another form of cancer down the road.  However, her long term prognosis looks good, and within the next year she will continue her daily rehabilitation exercises, and hopefully one day this incredibly brave and inspirational little woman, will walk up on stage at another school talent show, and sing a song she wrote about the cancer that tried to destroy her.  Or maybe it should just be a song about kittens.

Had a chance to see the two brilliant neurosurgeons, Dr. Pang and Dr. Zovickian today, the two men who saved Ella’s life.  As I shook their hands again and thanked them, I felt chills, and got nervous.  I usually don’t get star struck, and it’s not like I’ve never met these guys before.  But as an avid fan of science, these two brilliant doctors are like rock stars to me.  I have so much respect for what they do, that I seriously get a little shaky and wish I had head shots of them both, so I could get autographs.  I should do that, for Ella, I think later on in life she’ll be thrilled to have pictures of the two men who saved her life, up on her wall.

I mean people have pictures of Jesus up on their walls, but when do they have pictures of actual real people who have saved their life?

I’ll ruffle a few feathers with last statement, but ya know what, who cares!

I’ve got my daughter back, she’s alive, cancer-free and recovering by leaps and bounds on a daily basis!

Again, many thanks to all of you who have stood by our family through all of this, helped us with your compassion and love and so much more.  Truly you are the people who got us through to where we are now, and we owe you so much. Anyone who wants to meet Ella, wants to see in person the little girl you’ve read all about all these months, please send me an email excuse2realize@hotmail.com and we’d love to have you to our home for some food and drink and friendship.

We’re always open to accepting donations, Alycia and I are still not working as we are caring for Ella full time, so please know that your financial donation goes a long way as well.
Deb said she’ll upload some video of Ella celebrating at Fenton’s Ice Cream Shop, today, the results of her MRI.  It’s both hilarious and heartwarming.

Glen.

And there is a lot of progress and a lot of joy being had by both the Stewart and Madden families.  We are all tired, and stressed, and feel like we should all go go to therapy or take a long vacation or both.  We’re getting a good routine down; Ella is with dad and Deb from Tuesday afternoon to Friday afternoon and then is off to mom and daddy Mark.  Her rehab is everyday, but we’re doing proper physical therapy on Tuesday and Thursday.  Ella is getting a lot of strength back since losing so much while in the coma for all those months.  She can roll on the floor, hold herself sitting up for 30 seconds, and is really getting much faster and more fluid with her movements.

Alycia and I are not going back to work anytime soon, and thanks to the support from so many of you, along with Arnie and Susan Cohen from carouselfund.org , we have been able to afford to put all of our time into helping Ella recover from the last 6 months of battling brain cancer and 3 month long coma.

We also were invited, but unable to attend, the clambake for a cure charity event, held annually in Pebble Beach and put on by mother and daughter Susan and Brandi Curtis, who lost their father/husband to brain cancer.  The event website golfandgrapes.org is where all of you can go and donate to this great cause.

Please also know that Arnie and Susan Cohen who run the Carousel Fund and hold an event every year in Petaluma, have been helping our families since Ella went into the hospital, they are amazing people who have been raising money to support the families of children with cancer.  Ella will hopefully be walking up on stage at their next event, to give both of them a big hug.  Please visit their website, donate, tell your friends and family members about these great organizations, and help them continue to do so much good in our community.

Ella has some big hurdles to overcome still, she is slowly starting to realize that she is going to have to work very hard to get back all that she has lost, and that even in doing so, she may never be the same as she was before.  I see this incredible 7 year old girl realizing and accepting things that most adults would struggle to discover and that most would purposefully use denial to avoid these realities.  She is my biggest inspiration, she is making me a better man, a better father, a better human, every day I spend with her.  I love her so much and I’m so hopeful for her future.

Here is something for those of you who came down on me for not being hopeful enough, during the worst of the last 6 months.

http://www.msnbc.msn.com/id/41299984/ns/health-cancer/

Deb here to give you some long awaited Ella updates…

What an amazing feeling to come home from work to a peaceful home with Ella resting, and Glen doing what he does best – being a dad!

It’s been months since I’ve heard what I am hearing now.  Glen playing Ella lullabies on the guitar, helping her relax to go back to sleep – and then laughter.  It’s been too long since I’ve heard that little girls laugh coming from her room, it feels good.  It finally feels like home again.

Last Wednesday, January 12th,  Ella was discharged from UCSF, and we brought her home.   After 5 emotional months, we start this next chapter of our life.

I was luckily enough to ride in the backseat with Ella on her ride home from the hospital.  Alycia drove us through the streets of San Francisco, across the Golden Gate bridge, through the Novato narrows and finally home to Petaluma.  Ella had been at Alycia and Marks house the past 5 days, today she came home to Sebastopol.  Glen has spent the past 5 days, scrubbing the house, organizing and decorating Ella’s room.  He is a wonderful man, and a dedicated father; I’m lucky to have him, and Ella.

Ella has always had an awesome room at our home, filled with books, games, puzzles and art – Well this kiddo’s room just got a whole lot cooler.  Glen has transformed her space into a visually stimulating & aesthetically divine, recovery room.

The ride home from the hospital was wonderful and memorable.  I videotaped the majority of the trip, a few times I would put the camera down, Ella would turn and look at me, and say ‘Where’s the camera?’ – and as soon as I started taping again, she would start with the shy act.  She is so funny, and I’m so thankful that even though she has physical limitations, her mind and spirit are intact.

I asked her ‘Are  you glad to be home and out of the hospital?,’ and her wide eyed response was ‘Oh Yes!  It’s much better, definitely Yes’.

Ella has a long road of recovery ahead of her.  We are all hopeful, but only time will tell how much recovery she will make.  She is getting stronger with each day, learning to use her hands, and strengthening her neck and shoulder muscles.  One of her eyes is very weak, so she wears an eye patch to strengthen it.  She is still being fed by the g-tube, but is able to have yogurt and ‘soft’ foods too.  For now, she is mobile only by wheelchair and our arms.  She will start out-patient physical therapy soon, but the most of the rehabilitation will come from stretches and exercises done at home with all of us.

Luckily Ella has four parents that love her more than anything.  Mark & I (step-parents) are working the (out-of-the-home) full-time jobs, and trying to help with Ella as much as we can in our time off.  Glen and Alycia are the real workers here.  Their jobs just turned into being a 24 hour a day nurse to Ella, as well as trying to balance life.

We are all so thankful to be home and learning the new routines of finding ‘normalcy’ in our life; however, this next chapter, yet hopeful, is even more demanding – but of course, also very rewarding.  Ella needs 24hr a day supervision, the only break you can catch is during movie time.  It’s a challenge because we want to keep her motivated and gaining strength and not just laying in bed watching movies all day.  She knows that getting better will be hard work, and our job is to keep her motivated and on track with a structured routine.

We’ll post updates & video weekly, if not more frequent.

Thank you to each of you for your love and support.  We have so many people to Thank, that one of these days, I’ll dedicate a blog just to recognize some people that have changed all of our lives for the better.

UPDATEISH

Glen here, I wanted to add that Alycia and I took Ella to see the surgeons who saved her life, today.  She didn’t remember them, and the full impact of this meeting won’t be felt by her, until years from now when she watches the video.  However, Dr. Pang and Dr. Zovekion were moved and relieved to see her doing so well.  Dr.Pang immediately went into doctor mode, checking her out, asking her to lift her arms, move her legs, etc.  He addressed the paralysis that still affects the right side of her face and right vocal-chord; he said in a few months we can talk about surgery to try and repair the nerves in the face, if they don’t gradually come back on their own.

It was very emotional for me to see these men again and thank them for saving my daughters life.  I have been waiting to do so for over a month now, going over what I would say time and time again, in my head.  Of course the well rehearsed speech was condensed into “thank you for saving my daughters life, I owe you everything”.  They are incredible men, scientists, doctors, humans.  If it wasn’t for science my daughter would not be downstairs, in her room, laughing at her favorite movies, screaming for me to come down because she has something very important to tell me, which turns out to be “daddy has a half-brown eye” which is audible gold to me.

I’m the richest man in the world, without a penny to my name.

Think back 5 and a half months ago.  What was happening in your life?  Do you remember the little details from each day, how the air smelled, the sounds around you?  Do you remember the little things your child did that made you laugh, or angry, confused?  How about your spouse, do you remember some wonderfully kind thing they said to you, some supportive and honest bit of vocal warmth that entered into your shattered brain and helped piece it together, so you could get a good nights rest?  Maybe just one full night.

I do, I remember everything, every detail.

I remember each day, every twitch of Ella’s body as she lay in a coma after undergoing brain surgery to remove that fucking cancer!  I remember each tear, each time a doctor would hint, through some slight facial expression, that they didn’t think Ella would live.  Every new nurse, every tasteless meal, every time Deb would hold me and tell me she was there for me, no matter what.

I remember the last five months vividly and I suspect I always will.  What all of us who know and love Ella have gone through in this past five months is trauma, and trauma tends to stay with you.  Not that any of us plan on trying to remember, I’m sure we will all have so much overwhelming joy coating our insides, each day we get to spend with this brave little girl.  We’ll have to work hard at putting that joy aside, for a moment of reflection.  Everything I have expressed on this blog over the past 5 months has been honest, and has been as close of a description of our suffering and pain as I could manage to write about.  I did this as both way to to vent, as a way to explain to those of you who cared, what it was I was feeling and as a way to document this ordeal for Ella.

Of course there were many times that I did not think Ella would ever get a chance to read any of this.  To be honest, I’m still in shock about Ella waking up, and although I’ve cried a bathtub full of tears in the last month, tears of joy mind you, I haven’t quite accepted it.  I was so distraught, so sad and angry, I spent so many days and weeks and months feeling that way, that it’s like my body is rejecting the all this positivity and wants to sneak back under the cloud of misery, the only home it knows.

Don’t worry, I’m fighting it back with the help of my amazing daughter and incredible wife.  Each hilarious thing Ella says, each time I look at her gorgeous face and half-cocked smile, the sadness and anger gets beat back a little.  Hopefully after a few months of my new full-time job (which I’ll share with Alycia) of working with Ella doing her rehabilitation and recovery, being her father and nurse and physical therapist, I’ll get totally blissed-out and never have to worry about being destroyed by depression ever again.

It’s 5am here in the hospital room.  Ella is sleeping, I just moved her.  She has to be turned every two hours so she doesn’t get bedsores.  She is doing a bit better at moving herself, although she has developed what I’m calling “bed madness” which makes her not want to move in the bed very much, for fear that she’ll fall out.  The doctors told us a while ago that she would be very scared of falling, because she doesn’t have the control of her body like she used to.  Fear of falling or “bed madness”(which is much funnier) she is dependent on us to turn her and that means interrupted sleep all throughout the night.

But we’re used to it at this point, and I kind of like it cause Ella starts mumbling in her sleep when you turn her over, and she says some really hilarious stuff.  What I’m not used to is the mini-fridge wheezing and crying all night, just one of the many possessed machines in this room that make very unnatural sounds, annoying sounds.  In the doctors office you get calming music, cheesy usually, but peaceful nonetheless.  In the hospital you get no music, you get beeps and buzzers, “code blues” and “visiting hours are over” on the loud speaker.  Nurses ramped up on energy drinks, with squeaking tennis shoes and big clumsy hands, crashing about in the dark. Plastic, plastic, plastic!!! Every little piece of everything comes pre-wrapped in it’s own 100-decibel-smashing plastic wrapper, which gets thrown away, not recycled.  I haven’t even seen a recycling bin anywhere in this place.  Although, in a perfect world, if each of us gave a crap about the earth and preserving it, and recycled everything, hospitals should be the place that gets a pass.  But because we all don’t do our part, ahh, that’s another blog altogether.

I’m so ready to be outta here!!

I will miss the high-speed internet though, see I have slow internet out in the BEAUTIFUL REDWOODS OF WEST SONOMA COUNTY!!!!  AHHH!! I will miss nothing about this place, not one thing, nothing no!

Patch Adams finally came in and did some entertaining for Ella today.  Robin Williams has nothing on Dr. Dan and his harmonica, pocket xylophone and dirty clown nose.  I laughed because I was truly entertained, not at Dr. Dan, but at watching Ella horrified by the 6 foot-tall clown doctor standing over her bed, speaking in a very unclowny deep voice, and scaring the crap outta her.  I think she was just respectfully staying focused on the act, after all she is an entertainer herself, she knows how to be a good audience.  I also suspect she was thinking “these people are doctors, I don’t have to listen to them, they’re a bunch of clowns!”.

Wait I think the mini-fridge just whispered “Damian” at me, I wonder what that means?  Ah, my sense of humor is back, how I missed me.

Is there a God?  Is there something in the water up here on Peaks Pike Rd?  It’s gotta be something super-natural, because we have some incredibly compassionate folks up here on the hill.  Yesterday, as I wrote about in the last blog, our landlord and neighbor Jason came over and helped me build the wheelchair ramp for Ella.  Between the porch and a hill, there is about 14 feet of access.  The ramp extends out 8 feet from the house and that leaves barely enough room to get the car up to the ramp.

A couple weeks ago we asked a neighbor of ours, who has a tractor, if he’d mind coming over and clearing a little more space so we could fit the car with plenty of room to get the door opened and wheel chair out.  We thought we’d be bringing Ella home at the end of January so we’d have plenty of time.  But now that those plans changed and Ella is coming home early, we needed this dirt cleared asap.

Tim Weber to the rescue!!

At 8am this morning Tim came over, riding a big ol’ earth mover, and begun clearing some space.  Tim is like a surgeon with that tractor, getting up on three wheels, making it look a lot more like fun and not like work at all.  But it was work, Tim was out there for 4 hours this morning, donating his services to help our family.  Tim and Shauna Weber live up the street in this amazing house.  The first time Deb and I drove by I said “A contractor lives there”.  Ok, the house is incredible, but maybe the tractor and dump truck were a give away.  When I went over and introduced myself to them and asked if they could help us, I got the sense right away that these people were special.  They were super nice and offered to help right away.  Deb made them one of her awesome persimmon puddings over the holiday, which I’m positive, sealed the deal.

Turns out Tim owns a construction and design company, and as soon I have the website address I will link it here, because after seeing the inside of their house, there is no doubt Tim is one talented guy, and any of you in need of construction and design work, should go to him.  Not to mention his exceptional tractor skills!  Tim said he and his son Zack, who works with him, are doing a designing and building a big barn for one of our other neighbors.  Those cows and horses don’t know how lucky they are, that barn will be a palace after Tim is done with it!

I gifted Tim a couple bottles of wine, told him if he ever needs some free labor to call on me anytime, even if it’s cleaning out septic tanks (although I really should think more about that one).

All of our neighbors up here on Peaks Pike have been so supportive, we can’t wait for them to meet Ella, and get to experience the awesomeness that is her, and finally get to know the little girl they have all been supporting.  Different religious beliefs, different political leanings, but all coming together to as a community, to help one another and share in the joy that is our children.  My faith in humanity is being restored. Thank you universe, or God, or human nature or whatever is in the water up here on Peaks Pike rd!

Whatever it is I’m drunk with happiness!!  Thank you Tim and Shauna Weber, you’re awesome!!!

Yesterday was a very difficult day for all of us.  Waiting to hear the results of Ella’s MRI brought us all back to those days when our emotions were in tatters, when we were waking each day not knowing if this would be Ella’s last.  I tried very hard to concentrate on the logic; Ella just completed her radiation treatment, all MRI’s have shown no cancer re-growth.  We shouldn’t see anything, it would just be very unlikely that the cancer had returned this soon.  But of course we didn’t know for sure and the not knowing, was killing us.

My stomach has been in knots for a week, I knew this was coming and I tried to put it aside and just focus on getting Ella’s bedroom together, for her big homecoming.  An hour before we got the word, I was almost in full panic-attack mode.  Deb and I drove to Reno to get Ella a new kitten, because one of her pet kitten, Sebastian, died while she was in the coma.  Since finding out about Sebastian’s death, Ella has been very concerned with our female kitten Gaffy, and whether she was getting too lonely and sad, without a friend.  Ella said to replace Sebastian we would need to get two new boy kittens== and one new girl.  She had names already picked out, and each time I tried to reason with her to compromise and just get one new kitten, she became quite upset.  With all that she has been through I’m not going to spend a lot of time debating with her; she deserves to get anything she requests, and as Deb had a free day yesterday, we decided to drive to Reno and get the new kittens before Ella comes home.

This left Alycia at the hospital, reporting to us while we were on the road, the news of the day.  There were a couple of times when we had no cell service while going up the mountain and over Donner pass, and I was freaking out.  Driving faster than I normally would, to get to cell service quicker.

When Alycia called around 4pm, we were just getting back into Sonoma County with a car full of kittens and a belly full of butterflies.  Deb answered the phone, my heart stopped for a moment, I held my breath, and then I felt her hand on my leg as she said “she’s fine, the results were negative”.  A rush of emotion, tears gushing, heart beating again but racing as I gasped for breath.

Either way were bringing Ella home.  Five months in the hospital is my limit, I think it’s Ella’s as well, hell I think it’s anyone’s.  But bringing her home cancer-free was what we were hoping for, starting this long road of recovery with just a little less to worry about was certainly in all of our wishing pots.  Is that a thing?  Anyway, yes we all have these magical wishing-pots, they don’t do anything, but we didn’t care, we were filling them with hope and wishes anyway.

So our amazing landlord and good friend Jason Micheal came over and helped me build a ramp off the back porch for Ella’s wheelchair.  He went and picked up materials for us, paid for them, refused to accept money from me when I asked how much they cost, and then proceeded to spend a perfectly good Saturday afternoon, sawing and hammering (nail-gunning) and just being an all around great fellow.  He brought over his daughter Taelyr, she and Deb hung-out inside and went through some clothes that were donated to us, for Ella, as Ella has grown in the hospital over these 5 months, and no longer has any clothes that fit her.

We can’t bring her home naked!  We’ve got to get that girl some clothes.

Deb said that while her and Taelyr were folding clothes, Taelyr said “I’m really sorry that Ella got sick, I wish it wouldn’t have happened to her, I really hope she gets better”.  Deb had to hold back tears as I did too when she told me.  Trust me Taelyr, I wish it wouldn’t have happened either, but at least Ella will have a good friend like you helping her get better.  Friendship is a cure, a cure for a great many ailments.  Ella and all of us have so many new friends now, we’re lucky to have them and value you them greatly.

Ella will be home on Thursday of next week, starting a new chapter in her incredible life.  We’ll have to get used to these MRI’s, because we’ll be doing them every 3 months for the next 5 years.

Lets hope she walks into the hospital for the next one.  This girl, I wouldn’t doubt it.

Ella will have one last MRI before we leave UCSF, after nearly five straight months in the hospital.  From coma and despair, to hope and joy, our family has been through more in this five months than most will ever experience in their lives.  The feeling of not knowing if your child will live or die, is the most horrible feeling even if it only lasts for 5 minutes.  Our feeling of hopelessness lasted three months, and none of us will ever recover.  Ella on the other hand appears to be recovering quite well, and although she is functioning at maybe 20 percent of normal, she is still progressing rather well, and pending the outcome of this last MRI before we leave, it would appear that her cancer is gone.

If she makes it to the 5 year point, with no new tumor growth, then she will probably never have a return of this form of cancer.  Although with the dozens of CT scans and x-rays she received while in the hospital, her chances are fairly good of getting another form of cancer later in life.  Those are things that are very hard to think about, because what were our options?  It doesn’t matter much now, what’s done is done and we can’t take back all that radiation exposure Ella received.  We are just going to cherish the time we have with her, regardless of what happens in the future.  We all die someday, none of us knows when. The most important thing is truly living everyday, and never taking life for granted.

None us will be taking our time with Ella for granted, that much I can be sure of; not that any of us did before her illness.  Ella was loved deeply by all of her family, we were all very aware of her special personality and talents.

We had a great christmas with Ella, all four parents were with her and she opened a slew of wonderful gifts from some very compassionate and amazing people.  I videotaped the whole thing, but just want to show a small portion right now (see video below).

Thank you to Dan and Michele from Forestville, for donating to us a new hospital bed and delivering it free of charge!  You both have enabled us to set up each of our homes, for Ella’s recovery, allowing her to be equally comfortable at dad’s house or at mom’s.  Both of our families are so grateful to all of you who have donated money and time and gifts and advice and your personal stories, over the last few months.  We have so many new and awesome friends now, Ella is sure to have a very rich life with all of you playing a vital role in it.

The letters and stories that some of you have sent to us, have left us in tears.  It truly helps to know that there are others out there who have suffered and yet have found ways to feel comforted, that have enabled them to live happy lives.  The advice you all have shared has not fallen of deaf ears.  Maybe not some of the more religious stuff, as my Atheism prevents me from finding solace in the idea of god.  But the more practical things like meditation, relaxation techniques, focusing on the positive just slightly more than the negative, have really helped.

Some of you very religious folks have taken issue with my Atheism and some of the things I wrote about in this blog, especially during the worst of the last few months.  I want to say to those of you who wrote me and said terrible and hateful things to me, like I was going to hell for not being religious and worse things I can’t even bring myself to type, shame on all of you.  A father was watching his child lay dying, and was helpless to do anything. You people chose that very sensitive time to argue and fight with me about my personal beliefs and how I express them in a blog set up for my family and my daughter.  Should there be an all powerful creator, and should you meet him at the end of your life, you will surely be judged harshly for what you did to a grieving father in his darkest hour.  That’s all I wish to say on this subject, I’ve obviously had some time to think about it, and have only written a response now, because my main focus has been on Ella’s recovery.

Regardless of my personal beliefs, some of you incredible people have simply seen a family in need, a little girl with a rare form cancer, and you have come to our aid as fellow human beings.  For those compassionate acts, we are all indebted to you forever.  Never hesitate to call upon me if you need some help remodeling your kitchen, yard maintenance, gutter cleaning, male escorting (dinner only), laundry services, chicken training (certified chicken trainer, by the way) or anything else you can think of.

Keep following Ella’s story, she will always need your support.

Thanks again and happy 2011!!!