One More Request

Thanks to everybody who has been so supportive over the past 12 months. To our old and new friends and loving family who have been here through it all, present physically or not.

Beatrice benefited from the dedicated doctors and staff from so many different medical institutions. These are places where I met and saw so many children and families with their own amazing stories.

These institutions are incredibly well run and make life as smooth and easy as possible for families like us.

Where Bea Received Radiation and Lots of Loving Care and the Workplace of Dr. Greg - The Winship Cancer Center at Emory: http://winshipcancer.emory.edu/support-winship/WinshipContentPage.aspx?nd=747

Provided Lots of Support to Our Family - The Brain Tumor Foundation for Children: http://www.braintumorkids.org/

Where Bea Received Rehab and All Kinds of Health Support in 2012: Children's Healthcare of Atlanta: http://www.choa.org/Support-Childrens/Give-to-Childrens

If you or your employer plan to donate this year, please consider the places that provided the best care and experiences for Bea. It was the little extra things that made all the difference for us.

• CHOA has musical clowns and therapy dogs that entertain the children on a daily basis. They have a music therapist who wanders the halls looking for children to sing and loan an instrument to during their stay.
• The Winship Cancer Center has the most up-to-date radiation machinery that allowed for more targeted therapy for Bea. The machines had little radiation bounce. This was very new equipment at the time. The new machine meant no ricochet of radiation to the area of the brain that's healthy. Less bounce meant less injury to her brain. This is also where Bea met Dr. Greg, her biggest crush and a loving man who made her look forward to going to radiation.
• The Brain Tumor Foundation for Children does so many things for children and families. Some of what they do is provide financial support for families who are struggling with their bills. They also pass along your info to other foundations, such as Super Sibs, who also provide amazing support.

Memorial Service

Chris and I spent yesterday planning Bea's memorial service and have most of it planned out pretty firmly.

DATE: Sunday, December 30
TIME: 3:00 pm
LOCATION: St. Catherine's Episcopal Church in Marietta, GA.
     571 Holt Road - Marietta, Georgia 30068

RECEPTION AFTER SERVICE: After the service a reception will be held in the church hall offering some simple refreshment and a nice place for everybody to spend time together.

ALL ARE WELCOME, including children. If you plan to bring a child or children please note that it will be a fairly long service. Feel free to bring a snack or something quiet they can do if they have a hard time with the time.

CHILDCARE: This has still not been confirmed so I would assume that a staff member of the church has not been found to watch children during the service. Children are still welcome but they will remain with you during the service.

FLOWERS: Flowers will not be displayed in the sanctuary at St. Catherines.
We would prefer that in lieu of flowers being sent to our home or to the church that you consider donating to one of a few worthy causes on behalf of Beatrice.

Where Bea Received Radiation and Lots of Loving Care - The Winship Cancer Center at Emory: http://winshipcancer.emory.edu/support-winship/WinshipContentPage.aspx?nd=747

Provided Lots of Support to Our Family - The Brain Tumor Foundation for Children: http://www.braintumorkids.org/

Where Bea Received Rehab and All Kinds of Health Support in 2012: Children's Healthcare of Atlanta: http://www.choa.org/Support-Childrens/Give-to-Childrens

And Now the Hard Part

Beatrice....
My Sweet Bea...
Daddy's Boo...
Lewis' Bee-trice...

Sweet Bea made it to Christmas Day, her favorite day of the year.

She died in the early evening last night. She was at home and I believe she was gone before the paramedics arrived, which was lightning quick. It came on so suddenly and happened so fast.

Taking care of her for the past 12 months was so incredibly easy. I am so happy for the joyous months I had with her and was able to share with so many of you.

Chris and I are beginning to prepare for a memorial. I will post details as soon as we have them.

I have just a few more words left in me, I think, and no clever way to close this post to make myself feel better. Writing today is hard. Even just yesterday morning I could look over and see Bea and breathe a sigh of relief that she's here. I'd feel hope and write something that felt really inspired. Today I don't know how to end this post other than ending the post.

Keeping Bea and Lewis Entertained

Santa came to visit on Sunday. He brought a beautiful fabric book of The Night Before Christmas and read it to Bea. The kind old gent brought with him a very adept photographer who worked his own special magic with Lewis, my little man who detests mugging for the camera.

Santa Finds a Book in His Sack

Santa Reads Bea The Night Before Christmas

Lewis and His Silly Pal Mickey Mouse

Bea & Her Buddy Eva the Cat

Uncle Steve from Philadelphia visited for the weekend. He spent a lot of time with both Bea and Lewis. He and I took Lewis to Lake Lanier to see the lights and also indulged Lewis with some amusement park rides and popcorn. Uncle Steve got a bit dizzy on one so mom had to do most of the riding with Lewis. Uncle Steve and Daddy also took Lewis out to do mini-golf and go-carts at Mountasia.

The weekend before brought a visit from Grandmom from Philadelphia who spent a lot of time sitting with and reading to Bea. She also went Christmas shopping with me and bought Bea a beautiful red velvet Christmas dress to wear on the big day.

Through all of this Bea has been holding steady and holding court at our house. We have had a steady stream of visitors of friends and family and are so thankful for you all. We are thankful for the company, the gifts, the food and most of all the love you bring and leave behind for Bea to keep her strong.

Better Still

Bea is still going strong and is finally having some truly happy moments. She'll make a little noise now and again. Nothing specifically verbal but it's always when something she likes happens - like when our cat Eva hops up to nap on her. She also giggled last night while I watched Wallace & Gromit with her. Cracking Contraptions is a steady favorite and there's one particular skit about soccer that always cracks her up.

So, it's clear that she's pretty much totally lucid and follows what's going on as long as she's awake. And, that's almost all day. We do whatever we can to entertain - reading books, playing with a ball, bringing out some of her favorite toys, painting her nails, massaging her hands and feet - whatever we can think of to keep her feeling good.

When she gets particularly excited she tries very hard to sit up. If she keeps improving I think that'll happen soon. She is also moving her fingers on her left hand a bit - enough to pet the cat, jingle a bell or hold something important. She also can push a ball just a teeny tiny bit. I'm planning on doing more ball play with her today.

I'm still in a bit of disbelief that the doctor's wrote her off so quickly just 3 weeks ago. My thought is that it was a mistake but an understandable one. Bea was recovering from hydrosphalus. No doubt about that. This was the fourth time and the second time that is was really bad. She has never healed quickly from it. Her slow response to therapy has given doctor's pause in the past but she always managed to come through. It just takes her longer than most people. That's what I believe happened here. The doctors didn't take into account her past recoveries and were basing their conclusion on the common. Commonly, one would have no recovery. But, we all know that Bea is no common little girl.

A Whole Week at Home

Bea has been home for 8 days now and is still doing quite well, all considering. She is by no means living a normal life but it's the closest we can get so we'll take it.

We've set up a hospital bed in the living room so that she's in the mix all day. She doesn't seem to have trouble falling asleep when she's tired so noise isn't an issue. And, this is the center of our annual Christmas decorating and we want her to enjoy the season as much as possible.

It is difficult to tell what she's thinking or feeling because her facial expression does not change significantly, except when she smiles. We have found that viewing old photos of herself does make her very sad so there's no more of that.

She's on a fairly regular sleep schedule, which is good for all of us. Chris and I are taking turns sleeping in the living room. Bea needs constant monitoring as well as a dose of Tylenol every 4 hours. So, it means someone has to be in the room with her pretty much every minute of the day.

We spend most of the day caring for her physical needs, reading her books, watching videos and having occasional visitors.

So, that's what our life is like today. I don't know what it will be like tomorrow. I usually don't even go there. I have today and try as much as I can to focus on that.

Bea Is Home

Bea came home late Tuesday for hospice care. It is much nicer than the hospital. Less dark and more colorful. She seems quite happy to be home but I imagine she may be a little confused. Hospice care means that the hospital came home with her, at least a little bit.

She is in a hospital bed. She still has a feeding tube in her nose. She is still not allowed to eat. She still can't sit up on her own. Whenever she has returned home in the past she was always significantly better. This is not the case this time but even if she's confused it's better than being unhappy in the hospital.

The hospice are is being taken care of by Harbor Grace and has been pretty smooth so far. We met her regular nurse yesterday and she's very well informed and sweet. So, so far, so good. Chris and I are taking turns staying with her, which means a split night shift. Chris is a night owl and I'm a morning bird so it works out OK for us. And, my in-laws are here so that gives us some respite during the day.

I expect that many of you, especially if you are local, would like to visit. We are requesting that visits come by invitation or request. We also need the visits to be scheduled. So, no drop-ins, please. It's not that we don't appreciate everyone's love for Bea. Bea is just sooooooo lovable. And Bea likes visits but we want to protect her from infection and fatigue. And, we have a deep need for private time with her now, too. I am sure you all understand.

Still Amazing

11 days ago we were told that Bea had a few days or maybe at best a week left. She is still very much here and showing modest improvement every day. She is awake and aware all day. This has been the case for a week. She started smiling on Thanksgiving. Today I held her hand up to her Kindle and she moved enough and pointed her finger to choose her own cartoon to watch. She is trying so very hard to talk. She can often squeeze my hand with her left hand when I ask her.

Assuming she stays this stable or better we are hoping to get her home early this week. It seems highly likely we can do it and we asked Bea if she wants to go home. Her response? A smile and a squeeze.

Another Day... We'll Take It

It's been 8 days since we were told that there was nothing that could be done for Bea and she is still here. Actually, she is doing a little better than last week. Nothing to get too excited about with regards to a miraculous recovery. But, she is awake most of the day and has had moments where she is being clearly responsive. She even smiled a few times yesterday. Thanks, Lucy!

Bea's vital signs have been consistently good all week and have given the doctor's cause to talk about a return to home for permanent hospice care. We are considering this but do not know what would be covered in terms of staff/nursing support. We have been told that her external shunt can remain as if we take her home but there seems to be confusion about this with different doctors. Chris and I have decided that the procedure to reinsert the shunt is unacceptable because they will not use general anesthesia. The other option provided was to cap the shunt and we decided this is a choice we cannot make as it would escalate her death. It's not a choice we can live with today.

Assuming that we get all or most of what we feel we need for support, that we get a clear and honest answer from our insurer (and know what we're getting into instead of getting billed after the fact which is their usual course) and that Bea holds steady for the next 3-4 days we will take her home. It's her favorite place to be and I know that living at the hospital day in and day out is wearing on her, too. We're all well taken care of but... just like in the Wizard of Oz... there's no place like home. 

It's Never Too Early for Christmas

I've been asked a lot what people can do to help out the family during this awful time. Until yesterday I had very few ideas. Today I have a good one and I hope you will oblige.

Beatrice will not survive until Christmas. It was my one wish left that she would. But, no, that isn't possible.

So, Chris and I have bumped up the date. Bea is in a large hospital room that is set up for hospice care. We have decorated for Christmas and play seasonal music. Even though it's way early, please put one seasonal decoration out on display today and keep it out until the holidays are over. This will pay homage to the life and loves of our Sweet Bea. 

Sleep Revisted

Again, I wish I were asleep. But, I can't sleep. It's just not possible. My mind is racing with a thousand thoughts and nothing from moment to moment.

I wish Bea were at home, sleeping in our bed, nestled between me and Chris like she's been doing for months. She doesn't go to sleep that way. She goes to sleep in Lewis' bunk. Then in the middle of the night she wakes up and wants company. When she could walk she would enter our room on her own and climb into bed. When she could no longer do so she would call my name... mom. I would walk over to her, carry her into the room and tuck her in.

I'll never hear that again. Not from Bea. Not ever. Her weight is something I will not have to carry anymore, not that I ever complained. It was never a burden.

Bea will be moved to hospice today, at Scottish Rite. The doctors have done all they can for her. She will not awake. She will not speak. Her little body will not survive her cancer.

She has maybe a few days or possibly a week left. It is hard to tell. But, she is on her way and there is no stopping it. No amount of tears or blogging or making art or anything can stop it. It is happening.

I don't know if I'll post again or what I will have to say next. Again, I'm entering a world that I don't want to belong to. Gaining experiences that nobody wants. It is a living hell. There's no more apt symbol than that wretched place.

A Longer Stay Than Expected...

Bea is still at Scottish Rite Hospital and is not doing well. So far she has had 2 surgeries. The first was on Saturday to replace part of a faulty VP shunt. That fix went well. However, the shunt was fixed but was still not draining well. That's making her very sleepy all the time.

Her neurosurgeon relieved pressure in her brain on Sunday by tapping her shunt and taking off some fluid. Later that day she did improve some. She could eat, talk a little, smile and do some foamy sticker crafts. She also watched some cartoons and a movie with me. She was awake on and off for several hours. Everybody thought her issue was the shunt, for sure.

Monday was another story. She was not very responsive and spent most of the day sleeping. This is not a good symptom. A CT scan was done and showed that her ventricals were still not draining well. Her neurosurgeon said that she should have showed more improvement than she did and for the first time indicated that he was concerned that the issue was not just the shunt.

Her neurosurgeon revised her shunt temporarily to be an external shunt yesterday afternoon. The brain fluid has been draining well. She woke up for a couple of hours last night and was able to hold onto toys and watch cartoons but that's it. No food and no talking.

All of her doctors have now said her condition is likey a combination of the shunt not working and the cancer growing. Bea is going to have an MRI tomorrow to see where she's at with that.

It's almost 11am and she still hasn't woken up though. It's making me kind of insane. I mean, she woke up for maybe half a minute earlier and I got all excited. But, it was a tease and she went right back to sleep.

This is total hell. I'm terrified that she's never going to really wake up.

Some Days at Scottish Rite

Bea has been at Scottish Rite Hospital since Satuday morning. Her symptoms were worse and worse almost by the hour last week and so Chris and I took her to the ER. She was constantly sleeping and could hardly sit herself up. Her speech was disappearing, too. My suspicion was that her shunt was broken. And, well, it was.

She had a partial replacement of the shunt on Saturday that is not working up to par. Her improvment has been slight so the neurosurgeon will be investigating further today. She is talking a little but is still very weak and lethargic. When a VP shunt is replaced the change you see is almost immediate - if it's successful.

Her hydrosephalus is entirely treatable here and we'll be going home soon but really, really unfortunate. For Bea to survive this horrible disease would in almost every sense be a miracle. And so we want her days to be as healthy as possible so she can enjoy every possible minute.

Lots of Updates

OK, so a lot has happened in the past month so I'm just going to post a list of it all. It'll be a mix of good, bad and in-between with running commentary per list, depending on how strongly I feel about it today. It won't be in chronological order either.

1. Kiki from the Fresh Beat Band called Bea a couple of days ago and was as sweet as can be. Bea was thrilled to talk to her. And, a package from the band arrived today full of fun things for the kids. Bea gave whatever didn't fit or she didn't want to Lewis. He was happy to get the scraps.

2. As of yesterday Bea is formally out of the Pittsburgh trial. I have no idea when the decision was made. The team that runs this trial never told us specifically. I found out from Bea's neuro-oncologist in Atlanta. I'm disappointed at this treatment of Bea and our family. My guess is that this decision was made a couple of weeks ago and I'd like to have that time back. We need it to figure out what's happening next and time is something we may not have much of.

3. Bea is being home schooled and has an amazing tutor. As long as she's on steroids there will be no school for her but, honestly, with the way she's holding on physically right now, I don't see her going back unless we find another therapy that can either cure or give her another "honeymoon".

4. She has regressed significantly since her birthday and can no longer stand on her own, much less walk. She is on steroids and the dosage is being reduced bit by bit. So far, that's been OK. But, she's visibly very, very sick. She has been stable for the past 2 weeks but that's about as good as I can say. Today she cannot walk or sit for long periods of time. She drools constantly. Her right side is almost completely numb. She has trouble with bowel movements and that upsets her more than anything else.

4. Bea has a swallow study on Monday to determine if any food or drink is going down her airway. If that's the case we will have to change her diet immediately. Her doctor here thinks it's possible because her voice often sounds watery.

5. We took Bea to Disney for her birthday. It was a pretty good trip but not as magical as in May, when Bea was almost totally healthy. Also, Chris got food poisoning and, well, a couple of days weren't pretty. But, Bea did get to meet Minnie Mouse and Pluto. She got to go on safari and bought another half dozen stuffed animals. So, she and Lewis came home happy.

6. We have found 1 open study at the NIH and are in discussions to participate. There are 2 other studies open, one of which she is not eligible for yet. I'm waiting to hear back from the other. Both could be good. Last year I would have said there's no way we're going to take her from trial to trial. However, Bea has been asking some more specific questions lately about her physical state. She has not asked about death but seems more interested in finding a way to get healthy again. She is very keen to do so and I feel that if this is her wish then we have to do it and take another shot with a new trial.

7. Bea had her first "art show" at our yardsale 2 weeks ago. Our next door neighbor organizes a neighborhood wide yardsale every couple of years and we always participate. Bea asked to sell  her art at the sale and I told her that I'd do better and put up an art show for her. She sold several pieces to friends of ours and even one lovely lady who was just looking for a bargain! Bea was thrilled and used some of her earnings to buy a toy the next day. Lewis also sold some of his old toys and was given that money to buy a new toy as well (with a few bucks thrown in from mom).

8. Bea is back to making art but not freehand drawing. We have found that stencils and stamps and colorful tape are great ways for her to make art with her limited physical abilities. She can't make art all day like over the summer but she still enjoys it and I'm glad she and I found something creative that she can do.

So, it's a lot to put in writing but it's been awhile and, honestly, I'm pretty burned out. For some weeks it seemed that Bea had a new issue every day and I spent a lot of time catching up with them. And, now I'm waiting for the other shoe to drop.

Another Update / A Bea Event, Kind of

Bea is home. And, that's the good news. She's happy to be home and that's the great news.

Other than that, well, there is not a lot of really good news to share. Dr. Jackaki, Bea's trial doctor, told Chris that the mass (tumor) has increased in size. It is smaller than when she started the trial but larger than her last scan. The MRI gives some detail but not enough to determine if the mass is too many good Tcells, bad cancer cells or both. Her gut says it's the cancer.

Bea had a sodium scan to see if that could provide more detail. The results should be in within a few days. They could be inconclusive, too.

What will be conclusive is the effect the steroids she will start taking today. If the steroids cause a significant improvement that means it's the Tcells. Tcells are the body's immune cells and steroids make them go away. Supposedly fairlly quickly. If Bea's improvement is modest then it will indicate that the growth is cancer.

Either way, I've taken Bea out of school indefinitely. The steroids pretty much destroy one's immune system so sending her to gradeschool would be irresponsible. I mean, she'd get every bug on every kid there and not have the ability to get rid of it on her own. So, that was an easy decision.

So, we're in a wait and see mode... again. Dr. Jackaki suggested we consider a second clinical trial at MD Anderson for Bea, if this one doesn't work out.

Now a change of editorial direction... our neighborhood is having a yard sale Friday and Saturday from 8-2 with supposedly 20+ houses participating. I'm doing it because it's always fun and I can sell off all of those things we don't use or fit into anymore that clutter our house.

Bea asked if she could sell her art and I said I'd make a little art show for her. Not everything will be for sale. I'm going to display a few of my favorites that are on display in the house but that I'd like to show for her. But, most will be available for purchase. If any of you have a hankering for some art or want to come see it or just want to see what me and my neighbors are selling off, please come by.

The neighborhood is Woodstream at Blackjack Hills in Marietta. The main corridor through the neighbhorhood is Rockcrest Drive, right off of Allgood Road.

Bea Update

Bea is in Pittsburgh today with her dad, getting an MRI and hopefully receiving her 8th vaccine. However, I have my doubts that this will happen today.

Bea has severely regressed in the last 2-3 weeks. At her birthday party she was able to walk around, a lot on her own, and only needed a wheelchair for long distances and to stay safe at school.

Today is a different story. She can't walk on her own. She can stand on her own but only if she's holding onto something with her left hand. And even that isn't for a very long spell. If she tried to walk on her own she would collapse in one step. Her right hand and foot are completely numb. Her left foot and hand are starting to become numb now as well. She can't dress herself or go to the toilet without help. She can't draw and has trouble feeding herself.

She drools constantly out of the right side of her mouth and her speech has slowed. She's more easily fatigued and her eyesight goes blurry now and again. I'm pretty sure her right eye is blurry all the time but she just can't tell.

And she has become fearful to tell me when something about her body changes because she doesn't want to go the hospital for a stay.

So, she's in a pretty bad state. There could be 3 causes - in combination or solo. The cancer may be having a growth. DIPG cancer grows in fits and spurts, which is frustrating. It either grows really fast or not at all and it starts and stops for no apparent reason. It could be her Tcells massing and causing significant swelling. That would mean the vaccine is causing the harm. It also could be that the shunt put in at the end of August is faulty and the hydrosephalus is not being treated. The purpose of the shunt is to treat this condition, also called "water on the brain." It could be all but  if it's not it's definitely one of them.

My guess about what will happen today is that she will be sent home on steroids to treat her symptoms and provide her with some temporary relief. That means no school because they squash her immune system. They also make the vaccine not work at all.

If the shunt is faulty she'll probably stay in Pittsburgh for a few days to have that replaced.

So, today Bea is not doing well. Not at all. So, although I'm not a big prayer person I do believe in something so if you're a believer in something send those thoughts, prayers, whatever her way. She really needs them.

Happy Birthday, Bea!

Bea is 7 years old today!

She is at school probably sharing home made cookies with her friends as I write this blog entry. Otherwise it'll be a fairly ordinary school day. It's library day so she gets to choose a new book. Chris took the day off so he will pick her up for physical therapy today, per Bea's request. Then they'll pick up Lewis on the way home and we'll celebrate with take out from Fuji Hana (edemame, anyone?), carrot cake and presents.

And, what neither kid knows is that when they wake up tomorrow there will be no school. We're taking them on a suprise trip to Disney World!

I'm so proud of Bea for being such a strong and happy little girl. Even though she still has some physical problems she has adapted and is even becoming pretty adventurous with how to get around a room. If she wants to do something herself that's exactly how it goes.

It's a great day to be Bea's mom.

A Day to Celebrate

Today is a day to celebrate.

Bea was diagnosed with DIPG 9 months ago, on December 17, and she's still here and she's still going strong.

The fact is that most children with DIPG survive about 9 months post diagnosis. Tomorrow will be the first day that she is truly beating the statistical odds.

As of today Bea can still walk (albeit not perfectly), talk, read, write, tell jokes, paint, play games, eat whatever she wants, bowl (her latest obsession) and go to school. She can play with Lewis all day long. She can sit with and pet her little pal Eva, our runt of a 5 pound black cat. She can hang with friends.

And, even more significantly, Bea will be turning 7 years old on September 26. She's going to have a great day and then we'll figure out the next milestone. Life works out at about one week at a time in our household and, well, that's a pretty good way to be.

It's All True

This has been an awful week. No... not true. The last 2 weeks have been awful and I'm battling emotions that I usually feel very short terms and it's an uncomfortable space for me to be.

And, because I know that so many people read this blog I've found that it's really, really hard to go in and write truthfully about the bad stuff. The feeling sad stuff. The got the blues stuff. The "I'm so f-ing angry" stuff. Well, that's the stuff that these past 2 weeks have been made of.

First, the "feeling sorry for myself" stuff... I got laid off from my job. A job that I love and want to keep. A job I've been at for 8 years and that I have become very, very good at. I teach at a for-profit college. One of those evil schools that's been in the news a lot lately. Problem is that it's not an evil school. Sure, it's totally mismanaged but it does so much good for the students and the teachers are fantastic. I'm one of them. I have the opportunity to teach part-time while still getting a severance and I'm jumping all over it. It's still a loss and it still makes me really angry that this happened to me and over 60 other teachers. So, hopefully I'll be back part-time. If not, it's off to the unemployment line for me.

But, in the larger picture, that's really not important. The big thing I'm dealing with is Bea showing regressive symptoms. Her balance has not improved since the VP Shunt was put in. The numbness in her right hand has not gone away. It's not changing one bit day by day. I wake up hoping to see Bea walking down the bedroom corridor with a skip in her step and what I see is a girl who often has to lean on the wall and sit down all the time. She can hardly stand up for a minute. With physical therapy this may improve but there's no telling right now whether it's a weakness that can be improved on or if it's a long-term or permanent problem.

It makes me sick to my stomach to think about. When I go to that mental place my body tenses, my face gets hot and I feel just totally ill. Because it doesn't feel right. It's almost all wrong. And, this feeling is based on the thought I had months and months ago - that my fear would trickle into Bea's life. I'm afraid that I'm losing hope.

It's all true. And it feels awful and so good to say it. Because acknowledging what I'm really feeling means that I'm just a normal person. I need to be normal sometimes.

Bea Update / More Bea Art for Sale

Beatrice loves making art and had a very productive period in late July/early August. She was just getting over her bad bout of hydrosephalus and the feeling in her right hand was almost 100% normal.

And so, of course, she made lots and lots of art. I finally put it all together, photographed and have most of it posted online for sale, again. She loves being a selling professional artist. So, to be direct, if you like her art there are lots of items for sale in my Etsy shop at http://www.etsy.com/shop/HelenZigaFineArt?section_id=10049301.

 

 

Some of the sales become pocket money for her and some go into her bank account. The pocket money is especially important because, well, even though Bea is doing OK right now she's still not well enough to do regular chores and earn an allowance. She's not 100% steady all the time and the feeling in her right hand is highly diminished. This lack of sensation has been pretty steady for about 2 weeks now and we're hoping that it will heal as it did back in January. If not, Bea's a trooper and is doing the best she can with it. And, she's learning to use her left hand for a variety of tasks.

Bea's a very adaptable little girl but I know she's having some stress about her illness. She's a good student and not being able to write well or quickly has made learning a little less enjoyable for her.

This last trip to Pittsburgh and her bout with hydrosephalus definitely took its toll on her. She isn't as happy as usual and has a lot more fear. She doesn't like to go out as much and prefers to sit. She just doesn't move around like she did a few months ago.

Recognizing this problem is hard because it is fairly new and I want to believe that Bea is OK. I don't believe that Bea is depressed but I do believe she is experiencing real stress. I imagine that this would be inevitable. She has been through so darn much over the past 9 months. I don't know how she didn't get stressed before. So, now me and Chris have to work on handling her physical health as well as making sure that she can cope psychologically.

No, that's not totally true. I want better for Bea than just coping. I can cope. She should be happy. Bea really, really, really deserves at least that.

Coming Home

Bea and I are coming home today. The doctors have looked her over and say she's ready to go back to Georgia!
Bea is in some pain from the 2 surgeries but is in good spirits. She's super happy about going home and can't wait to play with Lewis and see her dad.

Me, too. I'm pretty exhausted but very glad we made the decision for her to get the surgeries. Her eyes are more focused. Her energy seems fresher. Her balance is slightly improved. So, it was worth the worry and sleepless nights.

Still in Pittsburg

Just a short note... Bea and I will be at Pittsburg Children's Hospital until Sunday. She still has hydrocephalus, although not as badly as before. But it will continue to get worse again. So, we've opted for her to have the surgery here. She will get a shunt as well as a medical port. This will not interfere with the trial.

I spoke at length with the trial doctor and was told that Bea's MRI yesterday looked good and that it's clear to her that the vaccine is working. Bea will receive another shot tomorrow. So, she will be continuing with the trial!

This is a much better outcome than I expected.

Off to Pittsburgh Today

Bea and I are off to Pittsburgh, hopeful that the MRI will look good and that Bea will be able to continue with the cancer vaccine trial. I'm trying to be optimistic but it's hard. We've had so many bumps in the road this summer. And, now, Bea has a terrible head cold that's making her tired.

She came home from school with this cold on Friday. The the steroids have a side effect we weren't told about. Steroids are anti-inflamatory and reduce swelling. So, for that they're great. But, we did not know that they also suppress one's immune system and reduce body temperature. We sent Bea off to school last week not knowing that she would be more susceptible to germs. Had I known this I would have has her tutored for the first 2 weeks of school, until after this trip today. Hindsight is 20/20, of course.

I get really frustrated some days that doctors don't tell you what commonly happens when one is on a medication or about the side effects of a procedure. And then they blame the parents for not asking the right questions. It's very beaurocratic. Dot your i's and cross your t's but make sure you don't say more than you have to. C.Y.A.....

Apparently, getting colds is common with steroids. I found this out when I took Bea to her pediatrician yesterday to get her cold checked out. He told me without thinking twice about it. Bea's oncologist didn't say a word about what it would do outside of fixing the hydrosephalus.

So, it's not Bea wouldn't have taken the steroids. It was that or surgery. So, duh that's a no brainer. But, seriously, a little help, please?

Another World

I go through phases where I'm feeling introspective and want to share and other times where I want to just keep every thought close to my heart and not expose myself to outside scrutiny.

Today's one of those days where I want to share. I've had a lot of friends and strangers comment that they don't have any idea what it's like to live my life. Well, it's another world. My world is almost cinematic in its definition and the characters I've come to know and observe.

I live in a world where I sit in a doctor's office and overhear a beautiful teenage girl with remnants of hair casually talk about her Make a Wish trip with her mother. It's a world where I sat in a hospital room with Bea and several other children talking about their accomplishments of the week and what they want to do the next week. These accomplishments included things that we take for granted - standing up, eating a meal, talking. It's a place where a blind child is verbally directed by her mother to a box of toys. It's a world where my daughter fits right in. And, funny enough, she'd fit right in even if she didn't have cancer.

It would all seem to sad if it weren't. See, I so rarely see any of these children crying or upset. They're living, laughing and enjoying life. THey're just kids and that's why Bea would fit in with them cancer or not. She's not moved by these other children's illness or physical limitations. They're just another kid to play with or talk to.

They're just kids but they are so much more than that. They are the lesson we all need to live... that life is pretty great even when the worst possible things happen.

New School Year!

Bea started First Grade Today!

 

 

 

A great end to a beautiful day... Bea's smiling face after her first day of First Grade.

Oh, and not too shabby either... Lewis started PreK!

 

So, How's Bea Doing Now?

It's been awhile since my last posting and a lot has been accomplished in between. Bea is doing very well today. Actually, I'd say she's about as good as she was in June before she got an ear infection and all kinds of other kids stuff and then the hydrosephalus from a few weeks back.

She is on a steroid and the dosage is going down bit by bit. She will be off them this Friday. So far there have been no symptom recurrences while the she's being weaned off the steroid. That's good news. And, she's regained her balance, her focus, her intensity and regained a really healthy appetite (partly in thanks to the steroid). Actually, she's been perpetually hungry because of that drug. But, her hunger is becoming more and more normal now, too.

Her first day of 1st grade is in 2 days, on Monday, August 13. She's going to take the bus, per usual. She's going to have a new teacher in a regular classroom. I am completely comfortable with her going back full time. With how she's been the last few weeks I have no doubt she can handle it just fine. Actually, it's not even a matter of handling it. She really, really wants to go back and learn and play with her friends.

So, after a stressful month things are looking up. Wahoo!
I told you all I'd "wahoo" again.

One Step Backwards and a Half Step Forwards

So, good news... Bea got sent home last night with no surgery. Her oncologist and neurosurgeon agreed that she does have hydrosephalus but it is very, very mild and it appears that her body is taking care of it. It's at a level where steroids can be used to reduce swelling but where surgery is not necessary.

Bea is going to have a follow up consultation with both doctors on Monday. It's possible that things could worsen and she'll still need the procedure. But, of course, our hope is that this won't be needed.

So, that's half a step forward.

The area of concern is still about whether a new growth is cancer or super spectacular T-cells doing their business. Based on the Pittsburgh trial doctor's synopsis of the visit on Thursday the cancer area has grown but it's impossible to tell if the growth is good or bad.

Bea's oncologist in Atlanta indicated that the trial doctor suspects it is the good stuff but I'm not gonna get all excited about that. The emotional roller coaster (excuse the cliche) that this causes for a parent can tend to flatten inconclusive news. I need real proof these days before I get excited and write that classic "Wahoo". I hope to "Wahoo" soon.

One Step Backwards

I wish I had good news to post again but, unfortunately, that's not the case. It's been a breezy 5 months all considering and a few backslides were bound to happen.

Bea has hydrosephalus, also known as "water on the brain". She started exhibiting worrisome symptoms early this week. We were at the shore with my family and Bea couldn't walk for any real length, was falling a lot, could not change direction easily and said that her right hand was feeling a bit numb. She was also getting more headaches than usual. This all happened very quickly.

Bea and her dad went to Pittsburgh for her 6th treatment on Thursday. An extensive MRI was done and it revealed two things. First, she has hydrosephalus and it has to be treated today. Second, there is an area in her brain that is showing either a new growth of cancer OR an area where her T-cells are attacking the cancer. If it's the latter that's really good news because the vaccine is working. But, it's impossible to tell right now.

So, the bad news is that her participation in the trial has been suspended. She got no vaccine yesterday. The good news is that she's still in it and will be returning on August 13 for another analysis.

But... the big bad news is that Bea will be admitted to Scottish Rite Hospital today and will have to endure a minor surgery to treat the hydrosephalus. She doesn't know this yet and hates being in the hospital. I know she's gonna flip out when we get there and she realizes that she's not leaving right away.

I'll post details on what's going on as soon as I can.

Two Teeth

We drove from Atlanta to Philadelphia on June 22/23. Beatrice had 2 loose teeth and thought they might fall out soon. She brought her tooth pillow just in case the big event happened while we were away. The tooth fairy had to find her, of course!

A few hours into our trip the first tooth fell out. Within an hour the second was gone. That's 2 teeth in an hour!

Beatrice had also made some drawings for the tooth fairy that we put in her pillow. Her hope was that the fairy would give her more cash if there was a drawing AND a tooth. Very entrepreneurial of her. And, she was rewarded.

She's looking for exactly the right toy for her $20. Any suggestions?

What a Week / Overzealous Doctors

I'm not even sure how to start this one there's so much to write. I think I'll start simply... if you take your child with cancer to a doctor that isn't hers for an ear infection you may find yourself in the hospital with a bunch of overzealous oncologists.

We visited Philly to see my family and were supposed to arrive on June 23 and leave on June 30. Chris would stay for the weekend and then go back home to work for the week. While we were visiting I would drive Bea to Pittsburgh and Lewis would stay behind with his grandmother. It's not a long drive and it was good for Lewis to hang with family. Easy.

When Bea woke up the morning she got her shot she appeared to be coming down with a bug. We'd been staying at my brothers and both of my nephews were sick with high fevers earlier in the week. Bea's ear hurt, too. So, I guessed it was an ear infection. A little Tylenol did the trick for awhile, she got her shot and we were on our way back to Philly. By the time we got back she was lethargic and running a high fever. So, I thought I'd take her to the doctor the next morning.

She woke up totally fine. No fever. Running around like crazy. Good appetite. No problemo. After lunch she wanted to take a nap and things went downhill from there. Fever came back. Lethargy returned. Her ear hurt again. She was not feeling well. But, it was late and I thought it'd pass.

Next morning she was no better so we pack up to leave for GA with the plan to go to an urgent care clinic. My guess was that she needed an antibiotic and some Tylenol. The urgent care clinic refused to see her because one of her symptoms was mild nausea. So, we were sent to a local ER.

I told them, of course, everything about Bea. Next thing I know she's getting a CAT scan and they're insisting that her symptoms are the cancer, not an ear infection. They did verify that she had an ear infection. They also said she had "hand, foot, mouth" disease, which it turns out was not correct. They gave her an IV antibiotic while we were there and took a blood sample. The blood sample turned out to cause the second nightmare. More on that later.

So, Bea and I got picked up by ambulance to go to CHOP, the Children's Hospital of Philadelphia. We were put in the ER and the next thing I know a neurosurgeon is in the room telling me that she has hydrosephalus (water on the brain) and that she has to have a tube put in her brain. I knew that wasn't the case. We went through this in December and it turns out the tube that was put in her brain back then to reduce swelling was NOT needed. She did not have hydrosephalus then and I knew it was not the case now.

AND, if I permitted the surgery Bea would be kicked out of the clinical trial at Pittsburgh. That, and no steroids either. I explained this to the doctor but he was pushy with regards to the diagnosis and seemed to think I was making a big mistake. I overheard him discussing the case in the hallway with his superior. He was not happy that I was keeping him from the surgery that he thought was so important.

Guess what? We stayed overnight and it turns out that she did NOT have hydrosephalus. She had an ear infection. I could tell she was tired, not floppy. Meaning, she had control over her body. If she had hydrosephalus her motor skills would be diminished. Not the case. She was just exhausted from the infection.

If any of you are DIPG parents... read this. The symptoms for an ear infection - loss of balance, nauseau, irritability, fatigue, disorientation - are also the symptoms of hydrosephalus. But, this arrogant surgeon couldn't see it. They did a second CAT scan her second day at the hospital and it was the same as the day before, the signal that she did NOT have hydrosephalus.

So, Bea got released from the hospital after one night. 45 minutes later, on our way back to my mom's house, they called and wanted Bea to come back because the first ER found a contaminant in her bloodstream. I refused to go back and said we'd have to arrange something else. They thought it could be a staph or strep infection (blood strep, not the throat one we all fear). Or, it could be that a contaminant accidentally got in when they took blood. My fear was that they would admit her to the hospital again and I knew she didn't need that.

We agreed that Bea would go to a local ER to get an antibiotic shot in the tuckus just in case. We did that for 2 days. The first day went smoothly. The second day brought a host of confused doctors who, again, focused on the cancer and didn't seem to understand that we were there for the antibiotic and that was all.

It turns out that she either has no infection because it was an outside contaminant from the ER nurse OR that she has a rare blood infection that only a small percentage of chemo patients get. Bea did not have chemo.

Even so they want her on antibiotics for the next week. Just in case.

All said, Bea was admitted to the hospital 4 times in 3 days at $125 a pop. That's $600 to treat an ear infection. And, that doesn't include the $125 for 2 medications I had to purchase, one of which it turns out she doesn't need. And, there could be bills for what was done in the hospital that AETNA does not cover entirely. We'll have to wait and see over the next few months. With regards to this, thanks to all of you have donated $$ for Bea. Those donations will help us out with these costs.

Anyway, what a nightmare. UPDATE: And now because of the antibiotics she had Bea has thrush, a painful fungus that grows on the tongue when you receive heavy antibiotics. So, thanks to those 2 shots Bea can't eat much. Great.

Parents... when it comes to your kids and doctors do NOT be bullied into taking action you know in your gut is not needed. Get a second opinion. Do NOT be intimidated by the uniform. If I didn't stand up for Bea we would be at CHOP right now and she'd have a tube in her brain. We would have weeks of physical therapy ahead of us. We would not be home in Atlanta. I would have had to quit my job or get fired because I already used up my FMLA leave for the year. Her dad would be separated from us in Atlanta. And, we would have lost the one hope we have for her... the vaccine trial in Pittsburgh.

How could I have lived with that decision? Especially, seeing that she's 100% back to normal today. No fever. Lots of energy. No earache. Good appetite. She's busy being Bea!

Fun for the Summer

Bea is going to camp at the Primrose School, the same place where Lewis is going to Preschool and PreK. She has been attending for about a week and has already gone on 2 field trips - to the Art Barn and to the local Fireman's Museum. The school director has sent me a few photos that I thought I'd share.

Family Photos

Some weeks ago a professional photographer came to our home to take shots of the family. Here's some of my favorites. They're in no order and have no captions. I don't really see the need.

Milestone for Bea

I just put Bea on the bus for her last day of kindergarden. This is a huge day for every child - both the first and last day of their first year at official gradeschool. But, for Bea, this is especially significant that she has survived and is healthy through her last day of school.

To her it's a special day of popcorn and movies and a water balloon fight is waiting for her at the bus stop when she gets home. For me, it's one stop in a monumental journey that shows me just how strong a little person she is.

Keep going, Bea. You're living an amazing life.

Bea the Designer!

Beatrice has taken a liking to design lately. Funny how a parent's work can have such an influence. Even as a 6-year-old she understands the difference between design and art. She knows what an icon is and how it's different from a drawing. Every day she amazes me with just how darn smart she is.

So, just like I did back in January with selling Bea's art I thought about how to can Bea do design for sale? I'd heard about a site called Zazzle, checked it out and decided that it provided exactly what we needed. An easy way to design product with Bea's artwork (and mine, too!)

So, Beatrice and I have worked on some lovely product designs to sell on http://www.zazzle.com/craftygraphics. The sale of each will garner us a royalty. Clicking on any of the ad banners in this blog (to the right) can also garner a 15% royalty for us if a sale results. The goal of any profits we make is to help pay for amazing activities for Bea and the family this summer and fall. These activities include local trips to Savannah, St. Simon and Chattanooga.

We are also planning to use sales from this Zazzle shop to help pay for a new back garden. We have some money saved but it's not quite enough to make it happen. Our yard is a wreck and the hope is to give Bea as much outdoor time as possible to keep her strong and healthy. And, Bea would like her own garden to plan flowers and vegetables, too.


See other gifts available on Zazzle.

Third Time Around

Bea had her third treatment as Pittsburgh last Monday. Her tolerance for the vaccine was great on the day and she's had no noticable bruising at the injection site. Considering how deep this injection is the fact that she doesn't get a big bruise is pretty amazing. But, this time around Bea has complained about bad headaches. She was fine the day after but she has had a headache every day since. She hasn't had a headache in weeks and weeks. Tylenol gets rid of it quickly but I still don't like that she's getting them.

There are all kinds of reasons outside of the vaccine for her headaches right now. Bea has a cold and heavy cough and the cough bothers her head. It's getting hot in Georgia and she forgets to drink, especially at school. She had a class trip at a local nature center and then a field day last week. Not on the same day but back to back. I know she didn't drink as much as she should have because she never does. But, the headaches are a still cause for concern. I can't talk myself out of knowing that it could be the vaccine. That wouldn't be responsible.

The headaches can be a sign that the vaccine is causing swelling in her brain. There can are additional symptoms similar to what happened to her in December. I haven't seen them but am keeping watch for them. That has made life a bit more stressful over the past week but these are the ups and downs I'd been warned about. Day in and day out, week in and week out and month in and month out I'm riding them as best I can. My goal is to hit that ride into year in and year out.

40

I am 40 today.

The opportunity to scrutinize one's past on a birthday is irresistible and I believe that turning 40 is a definitive landmark in one's personal history. It's not a source of stress for me, never has been. I like birthdays but the attention that comes with it is often odd for me. I don't love being the center of attention. So, writing about my birthday on my birthday is clearly drawing attention to a day that I usually don't make a big deal about.

But, this birthday is a big one and not entirely because I'm turning 40. It's because my past has become a blur and I'm starting to recognize that fact. I've lived long enough that I don't always remember my past clearly and I hate that. I've done so many amazing things in my life. I was in Berlin in 1990 and hacked a piece of the Wall off myself. I went off to grad school at 22 and finished within 2 years. I exhibit my artwork nationally and have had several solo exhibitions of my work. I got married to an amazing man who by all accounts I never should have met. A chance meeting and the next thing I know we moved from Philadelphia to Atlanta and have 2 great kids. And, eight years ago I finally got the job I always wanted - that of an art educator - working as a graphic design instructor at the Art Institute of Atlanta. I mean, the boxes are there and check, check, check...

The sad thing is that I really have to dig to think of these amazingly good things. They are not in the front of my consciousness. In my conscious life the benchmarks include 2 major events - the day my dad died when I was 23 and the day Bea was diagnosed with cancer. It's so hard to put other experiences into perspective when these 2 events are just so huge.

We all seem to forget the good things so easily. They become a part of our past and often stay there. So, my question is... why do the sad things of the past stay with us so much longer?

With that being said, my goal for this 40th birthday is to spend the day relishing the good things in my past and to try to strike a balance between those great events and accomplishments with the difficult experiences. It's not going to be easy but I know that I deserve some joy and sense of accomplishment today. Maybe tomorrow will bring a new mood, new thoughts, new worries or new promises. But that's tomorrow and it hasn't happened yet.

Brother and Sister

A professional photographer came to our home a few weeks ago and took some family photos. This is the first I have to share. Once I get all of them I'll post a gallery for you all to see. If this photo is any indication they are going to be magical.

 

Silence

Silence can mean so many things to us. And the cause of silence can often be a contradiction. Sometimes it's a sign that something fearsome is off in the distance. Sometimes it's a sign that there's peace in the world. For me, it's a little bit of both.

There is a lot of peace in our home and in my life today. That's why I haven't posted to the blog. There's not a whole lot to say. Bea is doing really well. Actually, she seems to have improved a bit in the last week. Her appetite is really up. The hair at the base of her neck is growing back. Her energy and attention can last almost all day. She's doing remarkably well.

Lewis is becoming a little boy and growing out of some of his toddler behaviors. Not all of them, but enough to notice that he's growing up, too. And, he spends most of his time at home playing with Bea and everything is pretty normal.

Chris and I are talking more again. We spent a time living in the same space but doing what most due in terrible situations... we were just surviving. We were unified but often just in terms of the space we occupied. We're coming together again and it's reassuring that we can go through so much and still find and need each other.

And, so, I fell silent. You see, to come to this blog means that I'm thinking about Bea's illness. The illness is present, no doubt. But, the ever present and overwhelming worry is not. I don't know if it's a matter of getting used to our new life. I don't know if it's because she's just so healthy and normal right now (I always add "right now" whenever I speak of Bea's health). I don't know. But, the silence feels really, really good.