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Saturday, May 12th, 2012 6:12 PM CDT
Hello Friends and Family,
We celebrated what has been in our house lovingly named "Emily's Day" today, and while we did things a little different this year, the sentiment was the same.
We chose to do our butterfly release at home this year instead of at the cemetary. In preparation, we bought all of the typical butterfly plants, put them in the garden, and hoped for the best. The idea is to have the butterflies lay eggs on the leaves of the plants, the caterpillars eat the leaves, and the cocoons to be laid on these plants with the new butterflies to be born there, snd hatch and fly away, at our home, where Emily loved.
Emily was most taken with that cycle and loved every step of it, and we will embrace it forever.
We went to the cemetary and did our balloon release as was always the tradition, but it was a cloudy day, and the balloons were soon lost from our sight.
It never gets any easier, but I guess you learn to deal with it better, and it will always be a sad day in our life.
As we have often said in the past, we have to maintain things normal for Emily's sister, MaryGrace. I think this is the biggest motivator in going forward, although one of our most difficult tasks of life.
Emily, we miss you more than words could ever say or understand, and look forward to the day our family will be united. Love you pumpkin, always and forever.
Monday, July 11, 2011 7:14 AM CDT
Happy Birthday to our little Angel !
While we selfishly miss you here on Earth, we celebrate yet another Birthday without you, knowing that Birthdays are much greater in Heaven.
We miss you today and every day, and love you all the way to Heaven and back. We await the day we are all together again.
All our love,
Mommy, Daddy, and MaryGrace
Thursday, May 12, 2011 5:56 AM CDT
We remember our little Angel Emily for the blessing she was, and is.
Three years ago today we lost her as she was called to be with our Father and Jesus in Heaven. While we feel the pain of her loss every day, we strive to remember the joy of Christ's promise and know that she is in paradise now and one day we will be together again.
It would be most selfish to wish her back here with us considering all of the worldly pains she had to endure, but in her short time with us she gave us so much joy that is almost painful to realize that this shall never be. We consider ourselves blessed to have had her on this earth for the time we did.
No amount of time will ever diminish the feelings of loss of our baby.
You can shed tears that she’s gone, or smile because she lived. You can close your eyes and pray she’ll come back, or open your eyes and see all she’s left. Your heart can be empty because you can’t see her, or be full of the love you shared. You can turn your back on tomorrow and live in the yesterday, or be happy for tomorrow because of the yesterdays. You can remember her and only that she’s gone, or cherish her memory and let it live on. You can cry and close your mind, be empty and turn your back, or you can do what she would want.... Smile....Open your eyes....Love.....and.. Believe......
With all our love and peace, Mommy, Daddy, MaryGrace, and Grandma and all your family
Sunday, September 12, 2010 6:45 PM CDT
Hello Friends and Family,
It has been some time since our last update, and we realize we may have lost a lot of people who used to regularly read Emily's page, but in keeping true to our word we will not convert Emily's page to a family blog. This page is all Emily's and we will only contribute those things that apply to her.
There were several milestones since our last update that we could have addressed in relation to our love and missing of Emily, but back to school seems to be a particularly profound season.
Since the beginning of the year, we have faced holidays that all have meaning and subsequent sadness.
Then Easter comes and reminds us of the last Disney trip we took Emily on before she were to pass and reliving the holiday as we will year after year, is a bit heart wrenching. To look at her with the joy she was having and all the special treatment she got on that trip and the whole time, she never knew why.
We will never be able to reconcile how or if we should have told her about her impending outcome, but we will always know that we made her feel special in the days she had left with us, and she loved being a Princess. Disney provided so much joy from her Make-A-Wish to that very last trip, the magic helped her always.
We made our way through Mother's Day, and while it will always be recognized, will never be a celebration in our house again. Then came Father's Day which while a little less painful for me than Mommy, still leaves a big hole emotionally considering all it stands for.
The summer is fairly uneventful, but when it is time for a family vacation, it is not hard to realize that someone is missing. It was always four and anything less is blatantly obvious, not to mention emotionally devastating as you are packing or even driving. To look back in the rear view mirror and know that someone is missing never goes away.
I know people talk about time healing all wounds and silly clichés like that but the fact remains, our little girl will never be back in that back seat, and no amount of time will change that.
Back to school is especially meaningful because of all we did to try and keep Emily in a "normal" environment. At times she had no hair...but she wanted to go to school. At times she had short hair, and children made fun of her and said "you're a boy, not a girl, you can't play with us" but she wanted to go to school. Her spirit was never broken, and one of her last school events was a trip to a fishing museum that a classmate took pictures of. Afterward, the pictures were assembled in a frame and sized and will remain a part of our home's decor as this was her last school trip.
Emily enjoyed school because it made her feel normal. The fact that she had lived in the cancer world, made her yearn to be "normal" and her teachers, especially Mrs. Vitale, Mrs. DiLiello and Mrs. Sanchez did just that. And Ms. Sappleton did that for her sister MaryGrace.
We have now begun the school year and are just trying to get used to taking just one child to school...it is hard, and always will be.
Good night and God Bless,
David, Diane, ^Emily^ and MaryGrace
Wednesday, May 12, 2010 5:39 AM CDT
Hello Friends and Family,
Updating Emily's web page is as difficult today as it was at this time two years ago. While time has passed, the pain and feelings of loss have not diminished in the least. In fact, this entire time of year is filled with hurtful markers on a timeline.
As we set out to battle Emily's third relapse (which would become her last) it was at this time of the year that we had to face the fact that there were no more treatment options available, and at the end of February got the talk about taking her home and "making her comfortable".
As we faced this new reality wiped clean of any hope whatsoever, the focus became making every second of Emily's life beautiful for her. Anything you can imagine a child would want, we did. Then came Easter and trying to make it special knowing it would be her last one. She had a newly found intense interest in butterflies at this point and we gathered caterpillars and raised them in a container for her to see. During this time of year butterflies and caterpillars are abundant and we will have that reminder every time this anniversary date returns.
Every day that we had to keep up a brave face while knowing what was ahead, was the most painful challenge, until May 12th. That was without question the most painful day in our lives. People appeared in droves at Emily's Celebration of Life service from nurses who cared for her daily to neighbors we barely knew, and this is a memory that we will have to ease the pain. She touched so many lives and ours will never be the same without her in it. The most we can do is hang on to these good memories and try to push out thoughts of all the days, months and years of torture our little baby had to endure in fighting the disease that finally took her from us.
We have maintained what I guess most would call a "normal" life and MaryGrace continues to flourish and grow. A lot of what we do now revolves around keeping a normal environment for her. That is probably therapeutic for us because we cannot run and hide, or sink into a hole, because your responsibilities as a parent far outweigh your own feelings of sorrow and depression. However, watching MaryGrace grow triggers thoughts of wonder as to what Emily would be like at this age. These are thoughts that we will always have, but will never have answers to.
We will carry on today, and all the days to come with the hope that we will all be together again one day, and the peace of knowing that our little Emily is pain free for eternity now. We plan to release butterflies again, and MaryGrace will send a message to the heavens with her own balloon and we will always remember our brave little baby. Today's newspaper has a memorial in it that reads:
It has been 2 years since you left us, to be with Jesus in Heaven. We continually remind ourselves that your life in Heaven is beautiful, pain-free, and without the torture you went through here on earth in your short 7 1/2 years. The pain of missing you is something that will not ever go away, and your presence is felt every second of every day. Emily, we love you, all the way to Heaven and back, and await the day we will all be together again.
With all our love and peace, Mommy, Daddy, MaryGrace, and Grandma
You can shed tears that she’s gone, or smile because she lived.
You can close your eyes and pray she’ll come back, or open your eyes and see all she’s left.
Your heart can be empty because you can’t see her, or be full of the love you shared.
You can turn your back on tomorrow and live in the yesterday, or be happy for tomorrow because of the yesterdays.
You can remember her and only that she’s gone, or cherish her memory and let it live on.
You can cry and close your mind, be empty and turn your back, or you can do what she would want....
Smile....Open your eyes....Love.....and.. Believe......
Good day and God Bless, on this most somber of days,
David, Diane, ^Emily^ and MaryGrace
Friday, December 25, 2009 5:05 PM CST
Merry Christmas Friends and Family,
Below is a beautiful little poem we came across that is suitable for this time of year. Below the poem is our family letter that went out with our Christmas cards this year.
Christmas in Heaven
Author Unknown
I see the countless Christmas Trees around the world below,
With tiny lights, like Heaven's stars, reflecting on the snow.
The sight is so spectacular, please wipe away the tear,
For I am spending Christmas with Jesus Christ this year.
I hear the many Christmas songs that people hold so dear,
But the sounds of music can't compare
with the Christmas choir up here.
I have no words to tell you, the joy their voices bring,
For it is beyond description, to hear the angels sing.
I know how much you miss me; I see the pain inside your heart.
But I am not so far away, we really aren't apart.
So be happy for me, dear ones, you know I hold you dear.
And be glad I'm spending Christmas with Jesus Christ this year.
I sent you each a special gift, from my heavenly home above.
I sent you each a memory of my undying love.
After all, love is a gift more precious than pure gold,
It was always most important in the stories Jesus told.
Please love and keep each other, as my Father said to do,
For you can't count the blessing or love he has for each of you.
So have a Merry Christmas and wipe away that tear,
Remember, I am spending Christmas with Jesus Christ this year.
Adamson Family Letter 2009
Hello Friends and Family,
We opted to not send cards last Christmas, as we were not feeling very festive after the loss of our little Emily. And while the loss is no less this Christmas, we do need to get back into a normal life and carry on holiday traditions for MaryGrace. As you might see by her picture in this year's card, MaryGrace has certainly grown over this past year, and is becoming quite the young lady. If you look closely, the tree behind her is adorned with a photo ornament of Emily just above her shoulder. We know that Emily is watching over all of us.
MaryGrace is doing quite well in fourth grade and even though it is more challenging, she seems to be taking her school work very seriously. This past grading period she made the A-B Honor roll. She was promoted to Intermediate II in gymnastics, and has mastered "Rudolph the Red-Nosed Reindeer" and "Fur- Elise" in piano. Diane is still at the hospital and is doing a countdown to retirement which is still 3 years down the road. David has rejoined the workforce and it was no small feat in this economic environment. He is enjoying his role as Route Manager at Ecolab. So I guess you could say, we are starting to get into a normal life. Grandma Ruth stays with us on and off throughout the year, and has been here since Thanksgiving. She is a big help around the house and MaryGrace enjoys having her Grandma so close.
We still follow a lot of our little friends who have been battling Neuroblastoma, and it is so sad to see the scores of children who have gone to join Emily in Heaven. There are a lot of new treatments that doctors are trying today, but nothing has proven to be a true success. We always wondered "what if" the much awaited vaccine had been ready while Emily was alive, would it have saved her? We will never know but new trials are going on every day, and we only gain solace in knowing she is without pain and suffering forever now.
This Christmas season, we would like to extend our love and well wishes to all of you, and would ask that you love those around you with all you have, embrace every day even the most mundane, and know that every day on this earth is a gift.
With hope and peace,
Until later,
Good night and God Bless,
David, Diane, ^Emily^ and MaryGrace
Wednesday, September 9, 2009 9:04 PM CDT
We came upon an interesting poem on the website of a parent who also lost their child to cancer recently, and while we don't know her name to credit her (or him) properly, it was quite touching. This is a close knit community in the Pediatric Cancer world, and whoever that kind soul is will most likely be seeing this come back around.
I Lost My Child Today
I lost my child today
People came to weep and cry
As I just sat and stared, dry eyed
They struggled to find words to say
To try and make the pain go away
I walked the floor in disbelief
I lost my child today.
I lost my child last month
Most of the people went away
Some still call and some still stay
I wait to wake up from this dream
This can't be real, I want to scream
Yet everything is locked inside
God, help me, I want to die
I lost my child last month.
I lost my child last year
Now people who had come, have gone
I sit and struggle all day long
To bear the pain so deep inside
And now my friends just question Why?
Why does this family not move on?
Just sits and sings the same old song
Good heavens, it has been so long
I lost my child last year.
Time has not moved on for me
The numbness it has disappeared
My eyes have now cried many tears
I see the look upon your face
"They must move on and leave this place"
Yet I am trapped right here in time
The songs the same, as is the rhyme
I lost my child.........Today.
We miss our Little Girl so much, and regardless of the time that has passed, nothing will ever be normal for us again. We will continue to miss her, and will cherish every memory we have in the past and pull it into the present on a daily basis. We will do this for MaryGrace, for our sanity, and for our Baby Emily's loving memory. Many thanks to all of you who have continued to pray for our healing and strength, and know that we are appreciative.
With hope and peace,
Until later,
Good night and God Bless,
David, Diane, ^Emily^ and MaryGrace
Tuesday, July 7, 2009 5:31 PM CDT
Hello Friends and Family,
There was a time when writing in this journal was therapeutic, even cathartic to an extent. But as time goes by, you find less and less joy in sharing that which is your life in the cancer world. It becomes more and more difficult to write something inspiring, amusing, or even mildly entertaining because the hope is gone. During the cancer fight, in either good news or bad, you always had something to say. If you got bad news from the doctors, you had an outlet to get it out and inside you felt better and knew there were people out there that had traveled your road. On the same hand, with good news, you couldn't wait to share with others and you actually felt like you were doing something good, and giving hope to someone else who may have been feeling down about their situation. But when the fight is over, the words just seem to be words. There is no real impact because nothing you say is going to change the fact of the matter. We are committed to keeping Emily's site her own and not droning on about our day to day life but rather only those things that pertain to her, even in our loss of her. However, that doesn't leave a whole lot of room for uplifting, positive postings and we fear that eventually people may tire of reading such depressing news day in and day out.
Once you enter this world, the world of pediatric cancer, your life begins to revolve around dates. You have an indelible mark that begins with the date you first hear "your child has a mass and it is malignant, your child has a rare form of cancer" and from that moment on, you begin to live a life collecting dates both meaningful and insignificant. You begin to measure every facet of your life whether you need to or not, you can't help it. You have the date of diagnosis, the date you started treatment, the dates of transplant, recovery, scans, and if you're fortunate, date of NED. You start to measure holidays whether you were in the hospital or not, and make comparisons about what you were doing the year before diagnosis and it all comes back to dates. Then, those of us who have lost our little ones begin a whole new series of dates, and worse than that...firsts. You experience the first birthday without them (which for twins is a little extra whammy) the first day of school, the first Christmas and so on. However, none of these dates seemed to have the gravity of the most recent one we have gone through...the one year anniversary of our little girl becoming an Angel.
There was such a feeling of anxiety, fear, and sadness surrounding May 12th, that in a very strange sense, it was nice when it had passed. It was like some sort of pressure building up that was immediately gone once the day had gone by. It was as if something was going to happen or something was going to be different and it was going to be this earth shattering event that would change us forever when the fact is, the earth shattering event was a year ago, not now. As the 12th approached friends checked in on us, as did some of Emily's doctors and our church pastors as well, and they were all cognizant of the date and what it meant to us, and for that we are thankful. But all things being equal, it was just a date, and the real meaning and the real pain revolved around the 365th day that we have been living without our baby, Emily.
We commemorated the date with a butterfly release at Emily's gravesite, and we spent a good deal of time there. Afterward, MaryGrace released a balloon with a message written on it up into the heavens for Emily to see. It was a very symbolic day, and needless to say, a very sad one. Diane took the week off of work and we did things around the house. We reveled in the thoughts of Emily, and amazingly had a lot of very fond memories and conversations about her during that time.
We now are carrying on as best we know how, but for any that are curious, rest assured, the pain is no less. The tears remain just below the surface and can be erupted instantaneously by the ignorant comments of a complete stranger or the good natured intentions of a well wishing friend with no apparent rhyme or reason differentiating the two.
MaryGrace is in a Christian summer camp and is enjoying it quite a bit as they keep her full of activities throughout the week. This weekend we will go away for a few days to celebrate MaryGrace's birthday, but with that, we also remember Emily's birthday (again, more dates). There is no escaping the constant reminders that we have of our little Angel, and we are doing our best to embrace these thoughts and allow them to fill us with smiles instead of sorrow, and carry on for MaryGrace so that she will not be deprived of an otherwise normal childhood. But with all that she has been through, I don't know how "normal" that will ever be.
We ask for prayers for all the little children who are traveling this journey at whatever stage of treatment, and know that aside from faith, there is nothing that can give the strength needed to face this disease.
With hope and peace,
Until later,
Good night and God Bless,
David, Diane, ^Emily^ and MaryGrace
Tuesday, May 12, 2009 7:31 AM CDT
It has been one year since our beautiful little girl was called to be with Jesus in Heaven. While we know that she is dancing with the angels and free of pain forever, there is a never ending hole in our hearts and in our lives that will never heal. Emily, we will love you and miss you for the rest of our lives and await the day we will all be together again.
You can shed tears that she’s gone, or smile because she lived. You can close your eyes and pray she’ll come back, or open your eyes and see all she’s left. Your heart can be empty because you can’t see her, or be full of the love you shared. You can turn your back on tomorrow and live in the yesterday, or be happy for tomorrow because of the yesterdays. You can remember her and only that she’s gone, or cherish her memory and let it live on. You can cry and close your mind, be empty and turn your back, or you can do what she would want....
Smile....Open your eyes....Love.....and.. Believe......
With all our love and peace, Mommy, Daddy, MaryGrace, and Grandma
P.S. - New photos on the photo page
Thursday, April 16, 2009 10:10 AM CDT
Hello Friends and Family,
The twelfth has past, as have a lot of significant holidays and some ugly milestones.
The whole Easter season has a bit of a cloud over it. No, actually it has a huge cloud over it and I don't know if it will ever change. You see, at this time last year we had just begun to digest some of the worst news any parent should ever have to swallow. Although we got the devastating news that there was nothing more that could be done for Emily in late February / early March, it was several weeks before she was in good enough shape to go home. Once home, we still had daily doctor / hospital visits and she was effectively transfusion dependent.
Come Easter time , knowing what we knew, we arranged for a spur of the moment Disney World vacation. We had no idea how difficult it would be getting a room over a holiday, but sparing no expense we found our way into planning a speedy Easter vacation. We took Emily to the hospital, got her loaded up with blood and platelet transfusions, got the numbers of oncologists in Orlando and with the doctors' blessings, we took off. She was going to have anything she ever wanted at Disney because fact was, that was all we could do for her anymore. The valiant 4 1/2 year fight was over now, and all we could do was spoil her, and shield her from the awful truth of what was ahead. Sadly, even though this was to be her last trip to Disney World, she couldn't really even take it all in. After just a few attractions she would be tired and run down and while her mind wanted to do so much more, her little body just couldn't do it. So, we would retire to our room and she seemed just as content to watch Disney Channel and have milk and cookies and for the remainder of the day she would get spoiled there in the room.
One very funny thing from that visit was Emily's obsession for getting a "Coon Skin Cap" from Disney's Frontier land shops. While MaryGrace was trying on frilly little princess hats and scarves and the like, Emily latched onto this thing that looked like a dead animal. She put it on her head and had no intention of taking it off, and it only took Diane and I a few minutes to figure out her logic, whether it was a conscious choice or not. Emily was bald again and while she never voiced the actual words, maybe because she was older now, for the first time it was actually bothering her and this hat made of fur with a long tail hanging from it was the closest thing to hair she could have. With that in mind, purchasing that cap was not even an issue and she wore it constantly even after we returned home.
Later in that same month, Emily was awarded the "Kids of Character" award and went to school for the ceremony. Every month a child is chosen from each class in the school who most represents the particular character trait for that month. Emily was very upset that after three years in that school (including kindergarten) she had never been chosen for the award and miraculously in April she got it. But now, it is so sad to walk by her picture on our refrigerator of her holding her certificate with the date on it "April 2008" and know that just weeks after such joy and happiness for her, she would be gone forever.
No, Easter is not a good time of year for us but in reality, we can tie almost any holiday or significant event to something that is Emily and it doesn't appear that it will ever be any different. We still try to pepper in some good memories of things she would say and do that can still make us smile, but the sadness and grief show no signs of lessening, especially around holidays.
We did however make the most of the Easter season and try to keep the Promise of Easter at the forefront. It is only this promise that we have any joy at all now in that we know that through the resurrection we will all be together again someday, and that Emily is truly in a much better place. It just hurts so much to be without her here, while we wait for the day that we are reunited.
We came across a beautiful poem over the holiday that we felt was simply beautiful and decided to put it up here:
WHISPERS FROM HEAVEN
When I left this world without you
I know it made you blue.
Your tears fell so freely,
I watched; I know this is true.
While you were weeping,
Days after I passed away-
While all was silent within me,
I saw you kneel to pray.
From this wonderful place called Heaven
Where all my pain is gone,
I send a gentle breeze to whisper,
"My loved ones please go on"
The peace that I have found here
Goes far beyond compare
No rain, no clouds, no suffering-
Just LOVE from everywhere.
You need not be troubled
Just stay close to GOD in prayer
Someday we'll be reunited
My love, HIS love surrounds you always,
EVERYWHERE!
© Al Littleton and Brenda Smith
Until later,
Good day and God Bless,
David, Diane, ^Emily^ and MaryGrace
Monday, March 16, 2009 1:39 PM CDT
Hello Friends and Family,
We have past another "12th" of the month, and are continuing to swallow our grief as we feel the pain and loss of now ten months without our little Emily.
Since our last update, we came across another milestone but did not feel it was worth commemorating or posting about. On February 28th of last year, we were given the news of Emily's progression of disease and got what we refer to as "the talk". That is when the doctors tell you that nothing is working and nothing is going to work and you should take your child home and make them comfortable and wait out your days. Just typing these words, I am as sick today as I was the day this all happened (for those of you with a strong stomach, you can see our journal entry of March 3, 2008) and there are no signs that this is going to change any time soon. Again, it was an event, but not an anniversary worthy of making note of. No, that should be saved for things like birthdays, weddings, and graduations. We will never forget that day, though, because at that date, we finally lost hope,.... hope we had held onto since August 31, 2003,.....when they told us that our daughter had cancer.
MaryGrace is doing okay, and while a wee bit emotional at times, seems to really be identifying with her feelings of loss, and does not hesitate to recount and talk about memories of things the two of them experienced together. She really does seem to look back at their times together fondly. When instances come up now, she talks about them as a happy memory and we just pray that Emily stays that significant in her heart forever, now that she is gone.
As we approach the one year mark of Emily going to Heaven, it's hard to not think about the differences in our life now. I actually have thought of them as "replacements" in our lives and routines. Of course things were different when she was diagnosed, and our lives and routines were different, but nothing as permanent as what we live with now. Things are changed forever now like daily visits to the hospital have been replaced by daily visits to the cemetery. Buying stuffed animals in the hospital gift shop are replaced by buying flowers for her grave, and the thoughts of Emily missing school are replaced by crying when you drive up to the school. The dream of walking her down the aisle in church one day are replaced with the awful memories of walking out of the church on May 17th last year behind her beautiful casket. Overall, feelings of hope and inspiration have all been replaced by just plain grief and sadness.
No, we will never be able to celebrate....her graduation from grade school,.....her first date,....her prom,.....her graduation. We celebrate her life EVERY day, and love her so much, here from earth....all the way to Heaven! We love you, Pumpkin.
We ask prayers for all the children that are still fighting this horrible disease, and strength for their families as they face such day-to-day uncertainty. There have been so many more little ones lost since our Baby Emily, and it's frustrating to think that there are alternative therapies around the corner, but not in place yet...all we have is prayer.
Until later,
Good day and God Bless,
David, Diane, ^Emily^ and MaryGrace
Thursday, February 12, 2009 12:15 AM CST
Hello Friends and Family,
The twelfth of the month is upon us again, and at 4:57 p.m. today we recognize that we have now lived for nine months without our Baby Emily.
It is so empty without her here, and in a way lonely. Emily formed a relationship with us that is not shared by many other parents except possibly those with special needs children. We had very concentrated time with her, hours, days and sometimes even weeks that we were together 24 hours a day. Even the most attentive parents have time away while their child goes to school, or at night when they go to sleep, but not us...side by side for almost five straight years, all day every day.
I think what hits even harder, is the particular time in Emily's life that we shared this bond. It was a period of great development and transformation for her, and I suppose us. That night that we sat in the emergency room back in 2003 we were relatively new parents who had just settled into life managing twins, and Emily was effectively a baby. She had just turned three years old weeks before, and did not have the awareness to understand what was going on. She was scared and held onto Mommy and trusted in whatever was going to be, as long as Mommy was there.
During the nearly five years of Emily's treatment, we not only made the most of the aforementioned "concentrated time", but we watched her grow up. She grew up in some of the most grueling circumstances and dealt with things that no child should ever have to withstand. But instead of being upset, she learned to deal with the special needs and was as cheery and bright as any kid who never had the first medical problem. She learned that she had to be careful of her tubies, she never complained about the hours on end in doctor's office, and never cried when we woke her up at 11:30 at night because she had a fever and we had to race to the hospital emergency room. Indeed we watched Emily grow and change from an innocent little baby to a smart, happy, funny, warm and loving little girl with wisdom that rivaled any pre-teen.
As we reflect on these nine months without her, all we have to cling to now are memories, and we need the memories, we need the feelings, it is all that keeps us connected to her. In most cases the memories bring pain or at the very least melancholy, but any memory is emotional and they come fast and furious. There is literally nothing that we can do in a day's time that doesn't trigger thoughts of Emily. It can be as mild as a program on Disney channel or an ad for a toy she wanted, or as intense as realizing that this tax season we will have to tell the accountant that we are only claiming one child as a dependent this year instead of two.
This past month has stirred up a lot of memories as we have attempted to do some normal things around the house that have been neglected for years. We tidied up the garage and Mommy tried sorting the girls' craft projects from over the years. We came across paintings Emily did, diaries she wrote in, pictures she drew of her family and herself and a lot of these we had never seen before. It all stirs up so much and is very emotional and saddening. The next challenge came when it was time to tackle the mountain of paperwork and receipts to get ready for tax time. In the pile were photos that were not yet filed away from our last trip to Disney with Emily, and many others. In addition there were pharmacy receipts and hospital discharges from May of last year and to see some of them was heart wrenching. I mean to think we are filling a prescription for pain or nausea medicine and on the drugstore receipt are also entries for Gatorade or Doritos that she had to have right then and there, and you look at the date and realize that it was just weeks before she would pass. It was an ugly pile to have to go through, but I don't think the IRS will give us an extension for mourning, so we had to do it.
Also this past month, MaryGrace has begun to show some emotion over her loss. Never has it rung more true, "be careful what you wish for..." because this came out of the blue, and after nine months of nothing, she is a fountain of emotions at times. It seems like the bereavement group at school is helping her identify with her feelings, and we may be entering a new realm with her. Each day may be a new set of feelings, but she does miss her sister, and it's good to see her in touch with her feelings of loss.
We are taking a quick trip to Texas next week to get away and visit a dear family friend. The diversion may be good for all of us considering the waves of emotion filling the house these days. It seems more than apparent we will never stop missing our Emily and the pain will never lessen. It may go on a shelf for a little while but it's still there, and it doesn't take much to bring it right back to the forefront. Somehow though, we manage to keep it together, and try to take on each day with a smile, and we still try to laugh when we can. All I know is I could never do it without my Valentine...Diane.
Until later,
Good Day and God Bless,
David, Diane, ^Emily^ and MaryGrace
P.S. - Please see the link below to the Band of Parents Fundraising page. They have added artwork from Emily on many of their products and all of the proceeds go to Neuroblastoma research. The artwork is a little bird that Emily drew on one of her last visits to the doctor's office. While we were speaking to the doctor, a Psych Med Student was asked to sit with Emily (we were in hospice by this time and didn't want Emily in on those grim and tearful conversations). The student asked Emily to draw something that made her happy, and this colorful little bird is what she came up with. The caption came from our Pastor who told Emily that his wife was getting ready to start chemo too, and he wanted to know if Emily had any words of wisdom that he could pass on to her to make her feel better. Almost without thought Emily told him, “tell her don’t be scared, don’t be afraid”. With that, the pastor’s wife began and completed her chemotherapy, and the two of them never forgot those words.
Monday, January 5, 2009 1:08 PM CST
Hello Friends and Family,
The holidays are behind us, and in some ways it wasn't as bad as we thought. But in other regards it was so much worse, if that makes any sense.
As we have thought so many times in the past, "Thank goodness for MaryGrace" because she is our motivation to carry on and sustain some sort of normalcy when we would much rather go into a cave and hide from the whole situation. We cannot deprive her of her childhood and all that comes with it just because we are mourning. As a result, we must continue to do those things that we would have done if Emily were still here, even things as tough as the holidays.
Our faith has always taught and reminded us of the meaning of Christmas and it is something we will never lose sight of. However, when you become a parent, so much of that same holiday is for the children and you take that responsibility very serious and want to make each Christmas more special than the last. That feat became especially important after Emily got sick and we always made sure things were extra special. This even goes back to the first year of treatment when we ate Christmas Eve dinner in the hospital room and Emily awoke Christmas morning to find that Santa had to deliver her presents to the hospital for her...always special.
All that in mind, this year was quite different and most saddening. The closest point of reference for Christmas morning was remembering just last year when we were waking up at 6:00 a.m. to the squeals of two little girls who found all their goodies from Santa under the tree, and they then feverishly tried pulling Mommy and Daddy out of bed because they wanted (or almost "needed" ) to start opening presents. Also, at this time last year, in the face of Emily's third relapse, we had finished a round of high-dose chemotherapy, flew to New York for scans, and were given a report of "stable disease and some improvement". In other words, this time last year we still had so much hope, something that is now gone forever.
This year though, there were no squeals or six o'clock wake ups, and MaryGrace waited quietly downstairs reading until Mommy and Daddy woke up. It was still wonderful for her, and we did have a nice time in the morning, but there is no denying that there was a huge hole in our morning, our hearts, and our lives.
We later had Christmas dinner with the family and luckily MaryGrace said the prayer as there was no chance of Diane or I getting through such a thing that day. We spent time together, went to work for a few days, Grandma stayed home with MaryGrace and we just counted down to the next holiday in hopes we could get through it and have it behind us. I mean, does anyone really feel like saying "Happy New Year" considering what 2008 held for us?!?
So now with all of it behind us, we reflect on the fact that we did have a good bit of time together as a family, more than usual and it was nice. Now, we try to continue moving forward into this new year while remembering our little baby Emily. In one week we will be at eight months since she left us to be pain free in Heaven and while it is almost one year, it's no easier now than it was after one day. We cope with the pain of the loss, we tell ourselves she is in a better place and free of disease, and lean on each other daily if not hourly. All of this combined, we should do okay.
Please continue to pray for all of the other little children who are still in the fight, and strength for their families. This horrible disease continues to ravage little ones across the country and we read tragic stories every day. Also, we added new pictures to the photo page.
Until later,
Good Day and God Bless,
David, Diane, ^Emily^ and MaryGrace
Sunday, December 14, 2008 10:18 PM CST
Hello Friends and Family,
This week marks the passing of the seventh month since losing our baby to her new home in Heaven. These past months, with Thanksgiving.....and upcoming Christmas....have been very hard. We miss our little girl so much.
We have done our best to keep the holidays normal for MaryGrace. We picked out a Christmas tree from the local high school and put it up, and even took in the annual performance of the Nutcracker this past weekend as we have always done, so things wouldn't seem too out of place for MaryGrace. We missed Emily so much then, as we had always been to every Nutcracker performance together. The Nutcracker was beautiful.
In the past month, we have also had some other significant events take place. The City of Cooper City allowed us to dedicate a tree in one of the city parks to Emily and a granite marker was placed in front of it to show that it was hers (a picture is soon to follow). The tree is a tamarind tree,...so beautiful with light, airy leaves, and pods that would have definitely made Emily interested......she loved things like this. There are many people to thank for this gesture and they begin with our friends Rick and Stacy, and their thoughtful kids, Abbigail and Cameron, Cooper City Commissioner Neal DeJesus, the City arborist Jeanette, and Panciera Funeral Home for the beautiful granite marker. The memorial is beautiful, and we are so thankful for such wonderful friends.
We have chosen not to send Christmas cards this year, it would be difficult to rehash our year. Please accept our wishes, for a wonderful holiday. We will be thinking of you all, and thanks for the thoughts and prayers for us. Our friends have made this journey much more bearable....thank you.
Until later,
Good Day and God Bless,
David, Diane, ^Emily^ and MaryGrace
Thursday, November 13, 2008 11:53 AM CST
Hello Friends and Family,
How saddening that our lives are measured in increments of time.
We now have marked the sixth month since losing our little Angel Emily to her triumphant victory in Heaven. While she has triumphed over all things hurtful of this earth, she has left a family that is so heartbroken. We are having such difficulty losing her to all that Heaven has to offer and working to understand that she is in a better, most glorious place. Selfishly we wish for her back, daily. But as I have said before, that is not to be.
Sunday, November 2nd was All Saints Day in our church and our Pastor had called and asked if he could include Emily in his sermon. This was a day to recognize and commemorate all those that had passed this year and gone on to their own triumphant victory and he felt compelled to remember Emily in the message that day. His biggest memory that he conveyed that Sunday was when he actually sought advice from her while she was in the hospital. She was in-patient getting who knows what, but smiling just the same when he came in and asked her a question. Pastor said that his wife was getting ready to start chemo too, and he wanted to know if Emily had any words of wisdom that he could pass on to her to make her feel better. Almost without thought (and probably with one eye on SpongeBob on the TV) Emily told him, “tell her don’t be scared, don’t be afraid”. With that, the pastor’s wife began and completed her chemotherapy, and the two of them never forgot those words. It meant a lot to think that a little child could have such an impact on someone’s life.
Our little Emily continues to touch our lives, even in memory. Not a moment goes by that we don’t relive something she said, think about something on the radio or TV that she would comment on, or even if it’s just looking at her empty bed in the bedroom and wondering “how did she ever sleep with all those stuffed animals in her bed?” The memories will never fade for us and I don’t really know if that is good or bad. After all, if memories are all we have now, albeit painful, what do we have if we lose them? So we’ll take the pain, mix in a few laughs thinking of her personality and just how cute she was, and trudge forward with life knowing we will never know another soul as happy, innocent, and pure as our little Emily. We love you baby, watch over us. The holidays are not going to be easy without you.
Please continue to pray for all the little ones who continue to fight and suffer in the name of this horrible disease, and keep their families strong.
Until later,
Good Day and God Bless,
David, Diane, ^Emily^, and MaryGrace
Friday, October 31, 2008 8:53 PM CDT
Hello Friends and Family,
It’s Halloween, and here we are again faced with one of those dreadful dates that remind us of all we have lost and the hole in our life. However, as we have said so many times in the last few months, we must continue “normal things “for MaryGrace, and so we shall.
Last year at Halloween we were on top of the world. Emily had cleared two rounds of scans with no disease; she had grown back a full head of hair, and was happy as a lark. Little did we know that less than a week later, we would be given that gut wrenching news that Emily had in fact relapsed for the third time…never good news. Everything deteriorated from there, but no need in going over that again right now. We go over it enough in our minds; we don’t need to torture everyone else with rehashing the sorrow and heartache.
MaryGrace seems to be quite well adjusted and has continued to open up a little at a time about her sister but she only seems to have fond memories, and doesn’t seem to have any reaction to the loss. She draws little pictures and always includes Emily whenever she draws a picture of herself. The counselors at school check in on her at least once a week, and they concur that MaryGrace is doing fine and by all estimations, much better than her parents.
Speaking of school, we met with the principal and guidance counselor of Embassy Creek Elementary to discuss the progress of Emily’s Butterfly Garden, and while it is not quite finished, it is already gorgeous. There are some finishing details but it is going to be a beautiful tribute to a beautiful little girl. They have tentatively set an inaugural ribbon cutting ceremony for November 17th, but that is not definite yet. In addition, a most generous friend has worked out an arrangement with Cold Stone Creamery Ice Cream to have a benefit at the store closest to the school to raise money for Joe DiMaggio Children’s Hospital with the teachers being Special Scoopers for the event. I think the kids will get a kick out of ordering their principal around for an ice cream cone.
We received an invitation to attend a Holiday bereavement group from the hospice agency that saw us through our last days with Emily, and for the first time in almost six months we are almost entertaining the idea of attending. We still hold strong to the idea that nobody will know what we went through and what we are dealing with and have not really welcomed outside counsel. In fact, just days and weeks after Emily’s passing, we were bombarded with offers to talk to people and attend group meetings but at that point we were just not in any position to do that with strangers. But now, with whatever healing has come from time and each others consoling, we feel maybe there will be some nuggets of information that we can consume and feel better with. We will still always rely on each other for the sharing of feelings, but it doesn’t hurt to listen and maybe learn how to better deal with our loss. It won’t mitigate our loss or lessen the pain of our baby girl being gone, but if there is something that helps us make sense of this madness, we owe it to ourselves and each other to explore.
We have had a bit of a cold snap here, and by cold that means in Florida terms less than 70 degrees. Any such weather reminds us of our trips to New York, and we will miss real cold weather and how the girls loved it. It was nice to bundle them up and make that trek to the hospital every morning and no matter how cold, it was always a fun trip. As we have said in the past, we may have been there for a bad reason, but we made every day and every event fun and the girls always knew it, and Emily was never scared. There will not be any trip to New York this year (good or bad) or any annual trip to Disney World at Christmas, so cold weather will be limited this year to whatever we get here in South Florida.
We thank you all, for your continued thoughts and prayers for us. Please pray for all the children that continue to fight, and for the families of those children who have lost their fight.
Until later,
Good Night and God Bless,
David, Diane, ^Emily^, and MaryGrace
Sunday, October 12, 2008 9:00 PM CDT
Hello Friends and Family,
As is evidenced by today’s date, we are facing the fifth month without our Little Emily, and in truth, the fifth month is no better than the first. There is never a day that passes that our hearts don’t yearn to hear Emily’s voice or to feel her in our arms. But this shall not be, and we move forward in a feeble attempt to continue to try and pull all of our memories to the surface for consumption every day, sometimes with meager success, and sometimes with none.
I think this is one of the most disturbing parts of reckoning with the loss of our baby is that it gets more and more difficult to retrieve those thoughts. It gets harder and harder to smell her smell, to recount her demeanor, to remember the feel of her skin, and this is all very upsetting. We can refer to video, or voice recordings and photographs, but what I am speaking of is the actual feeling that comes with reliving these moments. Long and short of it is, those thoughts and instances are drifting away and we are begging our subconscious minds to keep the memories fresh, even if constantly painful.
I assume that God has wired us to learn to move past the pain, and be able to function in all that His Earth has to offer, but in this instance, we almost don’t want to. We want to feel that pain because that pain is our connection to our little girl. To lose the pain is to lose the connection, and that is not an option. We need to feel Emily every day in every dimension and we do not want the intensity of our feelings diminished in any way. The memories now are very ambiguous, we want to remember her, but the last days were so sad. We want to rejoice in her memory but it is tarnished with what we saw over the last weeks, days, and hours of her innocent life.
We continue our vigil of daily visits to the cemetery and in doing so; we reflect and think of funny things or situations that would remind us of Emily. These reflections are not painful, and actually give us a laugh or two but I am confident there will not be a situation in our lives that will not make us giggle thinking about what Emily would have to say about it. In our visits, we have not been blessed with any of the things we have heard about people in the past who have been in our scenario. We had always heard of sudden gusts of wind when speaking the child’s name at the cemetery, or a cloud formation overhead that spelled out the child’s name or their silhouette, or a butterfly landing as a sign of their presence. But no, we have gotten none of these, just we and our memories see us through these visits and maybe that’s best.
MaryGrace has begun to open up a bit about her sister and when she is alone doing drawings, will make drawings of the two of them. Not sad drawings, but just drawings of butterflies or families and rather that draw three, she always makes four characters and always delineates her “big” sister (even if she was only older by one minute). Otherwise she is enjoying being the secretary of the student council, and is quite happy in school.
We are thankful for all the well wishes, and prayers, and look forward to the opening of Emily’s butterfly garden at school soon. There will be details about all of that soon, and as soon as we know, we will put them on this page for all to know.
Please pray for all the children who are still fighting (and adults too, as cancer is a horrible, unpredictable disease) and we ask peace for their little souls.
Until later,
Good Night and God Bless,
David, Diane, ^Emily^, and MaryGrace
Wednesday, September 17, 2008 8:37 PM CDT
Hello Friends and Family,
As this weekend passed, so did the marking of the fourth month since we lost our precious angel, Emily. In the scheme of life, four months is such a minimal amount of time, but measured against the loss of Emily, it seems an eternity. When you try to recapture that last hug, or kiss, or smile, or even a word, you have to reach deeper and deeper to pull it to the surface.
Living our lives without Emily is difficult, but moreover, it is empty. I will selfishly say that having her smiling face and spunky demeanor here with us, even if it’s during cancer treatment, is much better than being without all of the grief of cancer, and being without her. It is a horrible trade off and just when you wish you could turn it all back (as if you can) you have to also face this…would you want her back to go through what she went through those last few months? No person, no child, and certainly not Emily should ever have to live through that torture, but it’s so hard to think of the finality of never seeing, smelling, holding, or hearing her again.
We look at pictures now and are very cognizant of the dates and situations from which they originated. We look at them, school papers, awards, and everything else and produce an instantaneous morbid timeline comparing it to when she left us. It amazes us to say, “She got this award just three weeks before she passed” or “that picture was from a field trip just a month before she passed” and then realize what we are saying. Again, it may sound macabre, but this is what life is now and all we have left to hang on to are these reminders of Emily and her beautiful spirit.
This really came to light when the hurricane was threatening to come through South Florida and we were feverishly backing up everything on the computer and one of the things was a set of audio files that were recordings of Emily. When things got really bad near the end, it didn’t seem right to take video of her just lying in a bed, but we did buy a digital voice recorder to capture whatever tidbits she may have had to say. The files on the computer were from that recorder on May 11th, Mother’s Day, and to listen to those recordings and say “that was the day before she passed” just seems surreal. But, as weird as it sounds, those are some of the most treasured sounds we will ever have, now or ever.
During this period of learning to live without our Emily here with us, MaryGrace has begun to categorize things in her mind about her loss as well. It first revealed itself when we spent the weekend helping her make posters for her run for secretary of student council (can you imagine, third grade and student council ?!?). It took much longer than we thought it would, but we were all proud of our efforts at the end of the day. The next morning we were packing the posters up to take to school, and MaryGrace said she wanted to show them to Emily. I was taken aback because she is very limited in her conversations about Emily and I didn’t really know what she meant, so I asked. At that point MaryGrace told me that she wanted to take the posters to the cemetery so Emily can see them, and I immediately understood. I know that it is more symbolism than anything else, but to an eight year old, that piece of granite in the cemetery is all MaryGrace can equate to where her sister is now. She knows that Emily is in Heaven, but we can’t go to Heaven to visit, but we can go to the cemetery. So with that, we told her that after the election, we will take them to show Emily.
Everything else is pretty much status quo, and we are just going through life, putting one foot in front of the other, and trying to keep MaryGrace’s life full of activity and learning. We are out of the woods as far as holidays for right now, but we aren’t looking forward to the winter season. Inasmuch as it is a time to celebrate “Thanksgiving”, we are not feeling very thankful, and while it will be a time to celebrate “Christmas”, how can you celebrate after this loss? As we have said before, we have to make things “normal” for MaryGrace, but it sure isn’t going to be normal for us…it never will be again.
Thank you for all the thoughts and prayers, well wishes and good deeds we have received over these many years.
Until later,
Good Night and God Bless,
David, Diane, ^Emily^, and MaryGrace
Tuesday, September 2, 2008 9:48 AM CDT
Hello Friends and Family,
This past Labor Day weekend is the five year anniversary from when we heard news that would change our lives forever. It was then that we entered the world of pediatric cancer, and more particularly, Neuroblastoma.
It was a Saturday afternoon and while the girls would normally be playing in the kiddies’ pool on the patio, Emily opted to just lie on the couch and watch cartoons. They turned three years old the month before and to not want to splash and carry on was quite out of character, but we allowed her have her way and assumed she may have had a bug or just didn’t feel well. Later that evening, eating was a nightmare and throughout the day we were battling with the struggle of potty training twins. We did everything from pediatrician recommendations, to picture books, and even videos but Emily just wasn’t getting it like her sister was. We were told by the professionals to not let her “control” us that we had to be firm in our insistence that she go, and not let up. In the weeks prior we had numerous visits to the pediatrician who said she was constipated, and with each visit prescribed more and more laxatives, but this night, nothing was working. We put Emily to bed without any sort of dessert or treat that evening and a short while later, she began vomiting. We got her cleaned up and back in bed, but a short while later it happened again. Eventually we brought her into our bed sensing that something was wrong and that her malaise during the day really must have been some sort of stomach virus, and then she threw up again, and was completely pale. By this time it was around eleven o’clock at night and we decided this was serious enough that she needed to see a doctor. Grandma was with us that weekend, so knowing she was there with MaryGrace; we scooped up Emily and headed to the ER.
That night in the ER may go down as one of the longest nights of our life. Holding our baby and trying to comfort her until we found out what was wrong was all we could do. She was sweating as if she had run a marathon, and was still very pale but from fatigue she would nod off intermittently as we waited. The battery of tests began with urine, and an IV to do blood work, and then after we described her constipation issues the doctor ordered an x-ray and it appeared she was in fact, constipated. All of her blood work came back normal and the doctor said we need to just comfort her, follow the laxative regimen and see her doctor after the holiday. At this point the doctor had directed the nurse to take out her IV and discharge us but we felt we had to speak up. We had never seen our Emily like this and she never cried like this, even as a baby. We took the ER doctor aside and begged her to understand how well we knew our child and asked if there were “any” more tests we could do to get a more definitive answer. She explained to us that as an ER doc in a community hospital, without more to go on, she could not order anything else. She saw the depths of our souls that night and excused herself for what seemed to be an eternity and came back to tell us she ordered an ultrasound scan and that she could lose her job over ordering an unnecessary test, but at that point we really weren’t worrying about her career path. We were later taken to ultrasound, and we explained to the technician what we were dealing with and he was very friendly and accommodating considering the late hour that it was. After a few minutes into the scan he said “yep, I can see that entire stool backed up right here” and with that we felt we had our answer. Even though as a technician he wasn’t supposed to say anything, I guess he too saw how worried we were, and felt happy to give us such news.
So we went back to our bed in the ER and awaited the strategy for combating this massive constipation/bowel obstruction, and we could go home with a plan and get some sleep. We waited for what seemed like hours, because it WAS hours, and we couldn’t get the doctor’s attention much less any answers. Nurses, doctors, and patients all continued to buzz around the ER and we were just suspended in time, we felt like saying “it’s just a constipated baby, give us something and let us go home”. By now, the sun was coming up and the doctor/nurse said they were going to get us a room upstairs, and when we asked why they just said we had a long night and needed some rest, and it would be best for Emily. Reluctantly, we did what we were told and made our way to a room on the pediatric floor, room # 473, a number we will never forget. Emily dozed off again, and we waited some more.
Later that morning, after all the usual registration forms and papers, the nurses hovered around asking if they could get us anything. We didn’t want anything except to know why we are in this room for such a minor issue as constipation. Finally in walked two well dressed people, a man and a woman who had ID badges but after being up for over 24 hours they could have been doctors or policemen and we wouldn’t have known the difference. They asked if they could examine our daughter and we obliged, still not knowing exactly who they even were, but we were in a hospital so we assumed it was okay. They each took turns feeling Emily’s stomach and pelvic area, and then they asked us to go out in the hall and a nurse stayed in the room with Emily. It was outside that room in the middle of the hall that we were given the most horrifying news any parent could get. “Your daughter has a mass in her abdomen, and we need to treat her immediately”, this comment was followed up by our asking if they felt certain it was malignant and we were punched in the stomach again when the doctor said “we are 99 percent sure it is malignant”. Diane started to cry, and I became weak and nearly passed out right as the words came out. From that morning we began our journey with Emily.
Five years, both an eternity, and merely a few breaths, but life changing, none the less.
Until later,
Good Day and God Bless,
David, Diane, ^Emily^, and MaryGrace
Tuesday, August 12, 2008 9:50 PM CDT
Hello Friends and Family,
Today marks three months since our Baby Emily went to Heaven, and we are learning to live with our loss. It certainly is safe to say that it does not get any easier, any better, or any less sad. However, short of becoming a shut-in or a recluse, there is a certain amount of human interaction that has to take place in a day-to-day life just to function in society. We have to work, we have to carry on for MaryGrace, and we have to act at least “somewhat” social. If we were not bound by these generally accepted rules of society, we would probably be just as well suited to spend our days remembering and talking about Emily, going to the cemetery, and being alone together because nobody knows our hurt better than the two of us.
When I said earlier about learning to live with our loss, it is a very tricky thing. Of course there is no manual or resource guide to follow, and even though there are many other parents who have suffered the loss of their child, I will dare to say that no two scenarios are the same. Moreover, loss comes in a lot of different phases or levels.
When you first get the diagnosis of pediatric cancer, there is the immediate fear of the “possibility” of a loss, and it is quickly ushered to the farthest reaches of your mind because you begin this fight with the outright belief that your child will survive. This is a smart premise because if you entered into treatment with anything less than that you are already selling your child short and can’t even begin to fight this with all your heart. So, you fight, and support your child, follow the meds, keep your home life together, care for your other children, meet with the doctors, smile at all the visitors (wanted or otherwise) and have enough love left over to just shower this poor stricken cancer child with all that he or she could ever need. Then as treatment progresses, loss thoughts get buried even deeper away in your mind and with any luck you one day hear things about remission (or NED).
Then one day, you hear the word “relapse” and “possibility” of a loss transforms into “fear” of a loss, but again you continue to fight and shelve those horrible thoughts whether for personal strength or just the juvenile fear of a jinx. As if speaking about it would make it so. From there, as things begin to deteriorate, you eventually are told that there are no more treatment options, and are forced to face the “anticipation” of a loss, and it’s no longer buried away in the back of your mind. Now that “anticipation” is at the forefront of everything you do and you begin to evaluate every decision as a comfort vs. cure battle, and pray you are making the right decisions because a child can’t begin to tell you all that is going on in their little mind or body. Then, once you “suffer” the loss, you are too distraught to recognize your feelings and are generally too busy with final arrangements to let it sink in.
Lastly, you get to where we are now, “living with the loss” which having lived all the other phases this is clearly the worst of all. Living with the loss includes all the immediate things like the empty car seat, the empty extra bed in the girls’ room, mistakenly calling for Emily when MaryGrace is running late, and reckoning as to whether you are happy or sad when you look at Emily’s pictures, which fill our home. But after three months, it is even more than all of that. It’s every holiday without her, the first day of school approaching and only buying one backpack, or even turning on a TV that was left on cartoon network and remembering Emily’s love of that show. Then you try and take on the day and you see a mother walking with twins, a billboard for the hospital, or a conversation with a stranger who asks “how many kids do you have?’ and not knowing immediately how to answer.
Part of our living with this tremendous loss is maintaining our daily vigil to Emily’s earthly resting place (always with fresh flowers), long conversations with each other about our feelings, and allowing ourselves to feel however the mood hits us. We cry when we need to, we laugh when we can, and we remember Emily throughout the day, I guess that’s all we can do.
School starts next week, and we think it will be good for MaryGrace to get back into a social setting. A few weeks after school starts, we will be meeting with the principal of the school to review design ideas for Emily’s butterfly garden, and the inauguration of it will be sometime in October with all the kids and teachers to view. It will truly be a tribute to a beautiful little girl who touched a lot of lives in her short time on this earth.
While we miss our little Angel Emily, we are thankful for what we have, and for all of those around us. We just pray for peace of heart and wisdom of mind in caring for MaryGrace and may God guide us in helping her heal as we do, and with time may we all learn to “live with our loss”…a loss that will never be otherwise filled.
Until later,
Good Night and God Bless,
David, Diane, ^Emily^, and MaryGrace
Friday, July 11, 2008 6:42 AM CDT
Hello Friends and Family,
July 11th has always been a big day of celebration our home because on this day in the year 2000, we were blessed with two little angels from heaven. Any child’s birthday is a big thing to a parent, but when you are fortunate enough to have two on the same day; it’s just wall to wall joy. However, as anyone might expect, this will not be the case this year. There are a whole different range of emotions today and it is not unbridled bliss anymore. Instead, we spend this year having to temper our celebration for MaryGrace’s happiness on her birthday, with the indescribable sadness of the loss of our other precious angel. We knew this day was coming and weren’t quite certain how we were going to feel, and to be honest, the day is upon us now and I still can’t say that I know how we feel. The day has so much meaning in our family, and yet there is so much hurt, loss, and grief it’s hard to just put on the “happy face” and celebrate.
We will be visiting the cemetery today with extra special flowers and balloons, but that’s all we can do where Emily is concerned. This birthday, all we are left with are memories, and little symbols we leave behind at her resting place. It is sad to think that someone with so much spirit who affected so many people and touched so many hearts, is left to be remembered for the rest of time with a chunk of granite and a bronze plaque…it hardly seems fitting or appropriate for such an abundant and joyful soul.
This is just one of what I am certain will be many holidays that will be met with mixed emotions. I think the hard part is feeling the absolute compulsion to properly honor Emily’s memory, and yet not walk around moping and depressed and allowing that to spill over onto MaryGrace, who also is dealing with her own feelings of loss, whether she verbalizes it or not.
The entire weekend is going to be filled with activities, food and family so fortunately (or unfortunately) we won’t have time to sit and dwell on the sadness and MaryGrace will be on top of the world.
We have enrolled MaryGrace in piano classes which begin today and we feel this will lay a good foundation for her future education. The girls have always loved making music. Even if at the time it just sounded like noise, it meant something to them. So we feel it’s good to formalize the process and let her start learning on another level. Thank goodness for technology too. Instead of having to invest in a big piano and wonder where to put it, we just had to buy an electric keyboard and to top it off, she uses headphones to practice, so no noise for us.
So today, we will attempt to make the most of the day, and this weekend and we thank all of you who have continued to pray for us and our peace. It has not gotten any easier, but we are trying to replace all the sad memories with all the happy ones.
Happy Birthday Emily and MaryGrace!!!
Until later,
Good Day and God Bless,
David, Diane, Emily and MaryGrace
Tuesday, June 24, 2008 9:30 AM CDT
Hello Friends and Family,
As we surpass the six week mark of having lost our precious angel, I find it grows more and more difficult to update this journal. Not because of the emotions, because they remain intense no matter what we are doing, and in light of it, we have managed to keep things in check enough to get through day-to-day life. It’s also not because we don’t have things to say about our Little Emily, because we could fill a book and write another volume every week for the rest of our lives. Actually, it just seems unfair to Emily’s memory that any entry going forward, is about us…not Emily. It’s about how we feel, about how we are dealing with things, and about our problems but this page was set up to chronicle Emily’s journey, not ours.
I guess to sum it up, updating Emily’s Web Page was one of the many daily activities that were just part of life, until May 12th 2008 when it became a gut wrenching chore. So many things that were “normal” (even though we were in the cancer world) are now just painful reminders that we are now living a life without her. The other night Diane was trying to get some Thank you notes out, and signed the card David, Diane, Emily and MaryGrace. This otherwise mundane daily activity was now heartbreaking because that’s how every piece of correspondence that ever left this house was signed, but this shall never be the same again. Almost everything in our daily lives takes us back to Emily and it hurts so badly. Oddly enough, it’s not the obvious things that hurt so much, like the daily trips to the cemetery. No, it’s little things around the house like doing the dishes and noticing just one cereal bowl instead of two, or finding a missing stuffed animal that Emily loved and not being able to surprise her with it, or packing a lunch for just one child, or even that omnipresent butterfly in the front yard, it all brings up such emotions. Rest assured, Father’s Day was no picnic either, and I have a feeling a lot of holidays are going to be this way. Our next big hurdle is going to be their birthday…another huge, hurtful reminder that we will have to swallow, so as to not bring MaryGrace down.
I never imagined anything having such an impact on your life that you go through your days with this irreparable hole in your heart. Sometimes you get so overwhelmed you go into her room and pick up pillows, blankets, or stuffed toys and inhale every inch begging to just smell her one more time. We have video tapes & DVD’s of her that we still can’t watch yet, but on the same hand are dying to hear her beautiful little voice just one more time. And had we any idea just how quick her passing would be, we would have lived every hour of those days thirsting for a hug and an “I love you”…just one more time. But “one more time” is not to be, and we trudge forward for the sake of MaryGrace and for each other, knowing this emptiness that is Emily will never be filled again.
Diane said she feels that going back to work will help me as it has her. You still have your moments throughout the day, but if it’s not in the forefront of everything you do, and you have work to do to keep your mind busy, you can get through the days. So it just may be time, it’s all part of moving on. However something inside feels like even saying the words “moving on” is somehow tantamount to saying “leaving Emily behind” and those are feelings I will never accept. Instead I think we should tell ourselves that we are moving forward with Emily over our shoulder, and ask for her blessing with all we do. We are all still a family; it’s just that one of us got a head start getting to Heaven. Emily always did have to be the “Line Leader”.
Until later,
Good Day and God Bless,
David and Diane, Emily and MaryGrace
Thursday, June 12, 2008 9:14 AM CDT
Hello Friends and Family,
Today is one month since our Baby Emily has left us to be in God’s loving care. No matter how you phrase it, think about it, or look at it, she is gone and the realization of that has really set in and we are somehow trying to learn to live with that fact.
This is not to say that it is easy to exist with this gaping hole in our hearts, but every day we have to get up and go out into the world and try to function knowing that we will never see Emily running to the front door when we come home from work, or telling us about her day, or even just sitting together in the clinic waiting for blood work results. No more hugs hello, kisses goodbye, and not one more “I Love you” will ever be heard. I guess it’s that word “never” that rings so loud in your mind it’s just so final with no return. As ugly as the fight with cancer is, there is still always a glimmer of hope for a turnaround, even if the odds aren’t good you can still cling to that minimal percentage that is in your favor, and fill your days with hope and joy that you have one more day with your beautiful child. But in death, you no longer have that small percentage to cling to, just the finality of it. From there your hope then either turns to despair, or you begin to find solace in the joy that is Heaven and Thank God for His promise of eternal life in paradise. We are working so hard at the latter of the two options.
With all we know, and all that we believe, a rational mind says we should be happy for Emily who is now free of disease, free of pain, free of fear of the next surgery or the next big machine she will have to climb into. We should be thankful that she is dancing in Heaven with a perfect body and is with so many of her cancer playmates who went before her, and family members she never met. But this is not a rational time, it is an emotional one and all of these thoughts, while we wholeheartedly believe them, take a back seat to the overwhelming fact that…we miss Emily so much it hurts, it physically hurts.
After weeks of going through pictures, letters, toys and the like, of course we have our moments but in a lot of cases, we now look back fondly at how Emily would question things, or how much she would like a movie that’s coming out, or how much she would appreciate an animal story in the news, and Diane and I share those thoughts and even smile at them. The constant breakdowns over looking at Emily’s things have gotten better and now it seems its deeper thoughts that trigger the tears now. Something like opening a bill from the hospital seems rather ordinary, but then you see what the bill is for, and then you go, “oh, that was the scan when we found out about her last relapse” and then you fast forward from that point to today and see the outcome and grow quite somber, if not depressed.
You begin to straighten out the garage and come across several boxes labeled “Emily’s extra medical supplies” and inside are dressing change kits, needles, alcohol swabs, and bandages and you are thrust back into a period of time when you say, “this poor child was tortured, look at all this stuff!” You attempt to reconcile those feelings with the idea you were trying to save her life and kept extra supplies of everything just in case. But a true reconciliation is not there because once you open that box, you realize you will never need these things again and have to throw them away, and with that you have thrown away a piece of your life, and piece of your life with Emily, and a piece of Emily’s life.
The whole family considered, MaryGrace is probably doing the best out of all of us, and we are thankful. We haven’t ruled out that there are feelings under the surface that she is not dealing with, but why pick that scab. As of now she is able to talk about her sister, pray to her sister, visit her sister at the cemetery, and share her sister’s toys with playmates all with no negative emotions whatsoever, so we shall let her be a child and play, and when she feels she needs to discuss something, we will be ready to do so.
Diane has started back to work in an attempt to go back to a “normal” life, and I will be starting back soon as well once all the little nuances and paperwork around the house are completed. As previously mentioned, going through a lot of these papers is most trying, but needs to get done and will help us to move forward. Please keep in mind that moving forward does not mean putting Emily’s memory on the back burner because she is at the forefront of everything we think and do. However, we must learn to live and function with Emily’s memories, and carry on our family life for her sister until we are all united again one day, for this we pray for wisdom, strength, and understanding.
We ask that you continue to pray for all the other children in this fight, especially little Marissa Monroe who was sent home on hospice and is sharing her last days with her family. Her page is under the “links” section of this page. This disease is so unfair, and we have seen so many children succumb to it recently, it is truly heartbreaking.
Until later,
Good Day and God Bless,
David and Diane
Saturday, May 31, 2008 8:12 AM CDT
Hello Friends and Family,
We are approaching three weeks since our little Angel Emily was called to heaven, and we have decided to have a little family getaway time. While there is no escaping the memories or pain of our loss, we just wanted to break the routine we have fallen into, relax together as a family, and come back home with an understanding that we are now going to have to try and re-join the human race.
Our daily trip to the cemetery, mundane chores around the house and a trip to the grocery store only as needed are not lending to “getting back to normal” so we have to really make a conscious effort to come out of our little fortress and get back into society. We owe it to ourselves, MaryGrace, and the memory of Emily to not become just reclusive, anti-social parents who sit home mourning their loss all day. From this we must go forward and let the world know that we believe in Christ’s promise and His delivery of Emily into Heaven without pain or cancer, and the knowledge that one day we will all be reunited again.
We would like to thank all of the wonderful people who have continued to send cards, meals, and kind words and prayers; it is most comforting to have that support. In addition we would especially like to thank our friends Rick and Lucy as well as Pastor Tim Hartner and his wife Laurie whose love gifts have made this trip possible and they encouraged us to get away.
As I stated earlier, there is no escaping the memories, and they come up at every turn. Packing for just one child was heart wrenching to say the least and for all the traveling we have done over the past few years, it just didn’t seem natural to not be packing Emily’s clothes. Even traveling was uncomfortable without her as we look in the back of the car and not see two little heads bopping with their MP3 players, just one. I am not sure how we will feel about taking pictures because it is so blatant that something is missing from every shot, but we will cross that bridge when we get to it.
Friday was a special fundraising day at the girls’ school, and everyone (students and staff alike) was asked to wear pink in honor of Emily, and donations are going toward the memorial butterfly garden they are going to build in Emily’s honor. It appears that it was a big success if you measure by all the pink we saw when we arrived. This project is going to go on over the summer and will have a dedication ceremony early in the school year next year. We are so proud to know that Emily made such an impression on so many people that they would go to all these lengths to honor her.
Please pray for safe travel for us and strength to begin acclimating to real life again. Please also pray for all the little children still in the fight against cancer, and that one day a cure will be found.
Until later,
Good Day and God Bless,
David and Diane.
Saturday, May 24, 2008 5:40 PM CDT
Hello Friends and Family,
We are approaching two weeks since our little Emily went to sleep and joined our Father in Heaven. While the most comforting line anyone can offer us is “she’s in a better place now” it’s no comfort living without her. We miss her so much, and the pain that accompanies that is unimaginable. There is a hole in our hearts that will never be filled, and the best we can hope to do at this point is learn how to live with the hole, and not try to fill it.
We visit the cemetery every day to try and keep that connection with our little girl, and even though we are just talking to a piece of granite, we know she is listening from up above. This is the faith that enables us to get up in the morning, put one foot in front of the other, and function throughout the day. For without this faith, we have emptiness and will have lost our daughter in vain with nothing to look forward to in the future. MaryGrace goes with us to visit Emily quite often, and eagerly runs up to her site and places her hand on the stone and tells Emily how much she misses her and loves her. We are happy about this because at her age we didn’t know if going to a cemetery was going to be too upsetting for her, but she’s doing fine and is pretty well adjusted considering the circumstances.
We are filling our days with mundane tasks like organizing the house or yard work, but get very little accomplished compared to the dynamos we used to be. It’s busy-work at this point. Just enough to keep our minds off things for a while, but it doesn’t work. Because Diane could be straightening the girls’ room, and come across one of the blankets Emily always took to the hospital, or a favorite stuffed animal and just sink into deep meditative thought, if not outright sobbing. On the same hand I could be working in the yard and have nothing on my mind but the dirt and weeds, then all of a sudden here comes a butterfly to land on the flower next to me, or a neighbor driving by will stop and say, “how’s Emily doing” and on come the waterworks. There is just no escaping it, Emily is everywhere.
We said to each other a few days ago, we can’t hide from all of the memories of Emily, there are just too many. There are her favorite toys, animals, TV shows, computer screen savers with her pictures, photos around the house, all the drugs and her schedules, her own foods in the fridge, our cats that she loved to hold, the butterflies outside, the clothes in the laundry room, it just goes on and on. To add insult to injury, we are comforting MaryGrace by taking turns sleeping in the room with her in Emily’s bed, and if that’s not emotional enough, the other one of us sleeps in our bed which is the bed in which she took her last breath. None of this is easy, and again, we can’t escape the reminders, so we better learn to live with them, and embrace them.
Emily’s school has been wonderful and as soon as they thought we could sit down without blubbering uncontrollably at the mention of her name, they invited us into the office. Embassy Creek Elementary wants to construct a memorial to Emily and wanted our input on how to do it. Oddly enough, their idea was the same as ours and they want to construct a butterfly garden on the grounds in her honor that will remain forever (or at least as long as Mr. Becker remains principal). This is a process that will take place over the summer months and hopefully we will have a dedication ceremony in early October. This came about when parents were frantically calling the school asking what they could do, and even children were coming to school with jars of money from their piggy banks asking the principal if they could give it to Emily. If the whole world was made up of the personalities we have seen in the past two weeks from the Celebration of Life service to the parents and kids in Emily’s school, this would truly be utopia.
Diane and I have both opted to take some time off to just deal with things, and get our life situated before we get “back to the grind”. On top of it all, school will be out in two weeks and we have to get MaryGrace settled into a summer camp before we go back to work. Speaking of MaryGrace, we have gone out of our way to try and give her some control in this very uncontrollable situation, and given her options at every turn of her life. Going to school or not, going out or not, she makes all of her own decisions right now (except for bedtime and tooth brushing). In fact, she had her very first play date this week after school, and it felt very strange to us. We always told both girls they didn’t need to have play dates because they had their own best friend right here…but that’s changed now and we have to let her have social interaction. After all she isn’t going to want to sit around and watch us cry all day, so she is spreading her wings and we are getting used to it.
We still have some odds and ends with the funeral home in designing her plaque and the like, but the worst part is over and with each day we are growing a little more used to the fact we have to deal with life. We can’t stay in a cocoon, but we do still mourn, a lot. We miss our little Emily with every thing we do, and the idea we have to now live our life without her smile, her voice, and her hugs tears us apart.
There is an additional loss that we are experiencing right now and that is the big emptiness that comes along with our day to day life. It used to be filled with around the clock attention to medicines, doctor appointments, hospital visits for blood transfusions, hospitalizations when things got complicated, juggling who was going to stay in the hospital and who was going to get MaryGrace, the list goes on. We went from that to nothing and while it is a lot less hectic, we would go back to that life in a second if we knew we could have just one more pain free day with her, if we could get just one more hug, or hear her speak just one more time. But since those things will never be, we pray for strength to go forward in this new, less complicated life without our little baby.
We want to thank all the friends and family that attended Emily’s Celebration of Life. It was comforting to see how much of an impact that Emily had on so many people’s lives. We especially want to thank Pastor Tim and Pastor Luis, and the people of St. Paul and Pines Baptist for such a beautiful celebration. Thanks also for all the meals, flowers, cards, and support from all of you.
Please pray for MaryGrace and for all the other little children fighting this horrible disease, and think of us as you worship.
Until later,
Good Night and God Bless,
David and Diane
Monday, May 19, 2008 8:39 PM CDT
To our Dear Sweet Angel, Emily,
Today is one week since you flew to Heaven to be with Jesus, and you cannot know how much Mommy and Daddy miss you.
Everyone else misses you too like MaryGrace, Grandma,
Uncle Gordon and Aunt Amy, Kathy, Cinda and the hundreds of people who know and love you. We had a celebration of your life on Saturday and it was beautiful, complete with releasing butterflies in the playground at the end. Everyone was there, your doctors, your nurses, neighbors, friends from school, teachers, and even friends of Mommy and Daddy. Pastor Tim talked for a little while and Pastor Luis talked for a little while, and then people came up and told stories about how wonderful you were. We were so proud to know that so many people cared about you, and loved you and your beautiful smile.
But now, everyone has gone home, the celebration is over and the house is very quiet. Mommy and Daddy are so lonely when MaryGrace goes to school because we are left home all alone and there is nothing to replace the time and sounds that filled this house just a week ago. You will never know how big a part of our life you were, and how big a hole you left when you flew away to Heaven. We love you so much.
Mommy and Daddy are taking turns sleeping with MaryGrace because she gets afraid when she is alone, so one of us is always sleeping in your bed. It allows us to remember you so closely, and your animals are all being taken care of by us.
Until later,
Good Night and God Bless,
David and Diane
Tuesday, May 13, 2008 8:16 PM CDT
Hello Friends and Family,
We will be celebrating the life of Emily on Saturday May 17th, 2008 at 10:00 a.m. in a beautiful service at:
St. Paul Lutheran Church
580 Indian Trace
Weston, Fl 33326
(954) 384-9096
For directions from where you are, click Mapquest
This celebration is open to everyone who wishes to attend, and children are more than welcome. There will not be a viewing. Services will be followed by a Fellowship Gathering in the breezeway of the church afterward.
We have asked that in memory and celebration of Emily’s life that everyone wears pink, as this was her favorite color and black is far too somber for a “celebration” of her life.
We are asking that in lieu of flowers please feel free to make a donation to either:
Joe DiMaggio Children’s Hospital Foundation, in honor of the life of Emily Adamson (this is designated to go to the Pediatric Oncology Unit to be constructed soon)
Joe DiMaggio Foundation or,
The Lonliest Road (a group of parents of children with Neuroblastoma who are raising money in search of a cure)
The Loneliest Road
Below is a little something that has been circulating on the internet for years, but we felt it appropriate for this time:
A Bereaved Parent's Wish List
1. I wish my child hadn't died. I wish I had her back.
2. I wish you wouldn't be afraid to speak my child's name.
My child lived and was very important to me. I need to hear
that she was important to you also.
3. If I cry and get emotional when you talk about my child
I wish you knew that it isn't because you have hurt me. My
child's death is the cause of my tears. You have talked
about my child, and you have allowed me to share my grief.
I thank you for both.
4. I wish you wouldn't "kill" my child again by removing
his pictures, artwork, or other remembrances from your
home.
5. Being a bereaved parent is not contagious, so I wish
you wouldn't shy away from me. I need you now more then
ever.
6. I need diversions, so I do want to hear about you; but
I also want you to hear about me. I might be sad and I
might cry, but I wish you would let me talk about my
child, my favorite topic of the day.
7. I know that you think of and pray for me often. I also
know that my child's death pains you, too. I wish you would
let me know those things through a phone call, a card or
note, or a real big hug.
8. I wish you wouldn't expect my grief to be over in six
months. These first months are traumatic for me, but I
wish you could understand that my grief will never be over.
I will suffer the death of my child until the day I die.
9. I am working very hard in my recovery, but I wish you
could understand that I will never fully recover. I will
always miss my child, and I will always grieve that she is
dead.
10. I wish you wouldn't expect me "not to think about it"
or to "be happy." Neither will happen for a very long time,
so don't frustrate yourself.
11. I don't want to have a "pity party," but I do wish you
would let me grieve. I must hurt before I can heal.
12. I wish you understood how my life has shattered. I know
it is miserable for you to be around me when I'm feeling
miserable. Please be as patient with me as I am with you.
13. When I say, "I'm doing okay," I wish you could
understand that I don't "feel" okay and that I struggle
daily.
14. I wish you knew that all of the grief reactions I'm
having are very normal. Depression, anger, hopelessness
and overwhelming sadness are all to be expected. So please
excuse me when I'm quiet and withdrawn or irritable and
cranky.
15. Your advice to "take one day at a time" is excellent
advice. However, a day is too much and too fast for me
right now. I wish you could understand that I'm doing good
to handle an hour at a time.
16. Please excuse me if I seem rude, certainly not my
intent. Sometimes the world around me goes too fast and I
need to get off. When I walk away, I wish you would let me
find a quiet place to spend time alone.
Compiled by Diane Collins -TCF, Bay Area Chapter. Houston
Until later,
Good Day and God Bless,
David and Diane
Monday, May 12, 2008 9:33 PM CDT
Hello Friends and Family,
With our deepest, most heartfelt tears, we must announce our hearts are broken. Emily has been called home to the Kingdom of God and is free of pain at last.
While we feel this is probably the saddest day of our lives, we are respecting Emily’s dignity and will not recount her last hours of life on this earth. Suffice to say she went to sleep peacefully and at 4:57 p.m. took her last breath and went with the angels to Heaven.
While we mourn our tremendous loss because we selfishly wish we still had our little girl, we rejoice in knowing that she will suffer no more. We are blessed to know that she is dancing in Heaven with all that is good, and that one day we will all be reunited.
Right now we just pray for strength to carry on day-to-day, and wisdom to guide MaryGrace through what is the biggest loss she will ever know.
Please pray for Emily, our family, our strength, and pray that MaryGrace can cope. Please also keep in mind all of the other children who fight this disease day in and day out.
Arrangements will be announced on this page as soon as all the details are worked out.
Until later,
Good Night and God Bless,
David and Diane
Sunday, May 11, 2008 11:10 PM CDT
Hello Everyone,
Not much new to say, and the days are very unpredictable right now.
Emily woke up actually talking a little bit, and with it all, after a few hours, mustered “Happy Mother’s Day” to Diane. As luck would have it, we bought a digital voice recorder a few days ago to get all these last days on record, and we got some priceless moments to have forever.
She was fairly alert most of the morning, but moaned a lot during the day, even when she was asleep. The doctor visited during the day (even though it was Mother’s Day she was glad to do it) and checked her out. Her liver is still growing, and is continuing to fill her abdominal area all the way down to her pelvic region now.
Emily’s pain medicine has just about tripled in dosing since Monday, and as of this evening, is still not providing complete relief. We got authorization to increase the medicine, but she is still grunting and moaning and we just want to get her pain free.
As of tonight, she has sleeping spells of thirty minutes to an hour, but awakes moaning, and while we have medicine available, we have to wait until she can get her next dose. Needless to say, it is very upsetting to listen to her cry when there is nothing we can do about it. We have a whole closet full of medication, but we can’t overdose her, so we stand here helpless.
Sorry we don’t have better news or happier stories, but they aren’t there to be told right now. Our girl is suffering, and ironically this is all we asked that she wouldn’t have to deal with, but we don’t get to make that call now.
Until later,
Good Day and God Bless,
David and Diane
Saturday, May 10, 2008 5:06 PM CDT
Hello Friends and Family,
First off, we would like to thank all of the people who have offered such great words of encouragement and prayer both on the web page guestbook and on the phone. There is nothing that will make this situation any better, but these messages do make facing this a little easier. We are together at home, and Emily is relatively pain free most of the day, but that’s it for any good news.
Our time at home is filled with trying to keep Emily comfortable and staying on top of different crises as they arise. She is uncomfortable and gets agitated very easily, and we are trying to pull off a real balancing act. We want her comfortable and we have drugs for her agitation/anxiety, but by the time we pile all this medicine on her, all she can do is sleep throughout the day. This wasn’t what we had in mind when we discussed “quality of life” with our doctors. As a result, we try to temper the dosing of different medications so we can alleviate the situation but not knock her out for the day. She continues to have frequent nosebleeds, and it is upsetting to her.
The hospice agency is most responsive to our needs and any little problem that pops up, they are on the phone with the doctor and an appropriate drug is at our door within hours. In some cases I think we have actually gotten meds faster than if we were in-patient in the hospital. However, now we have a whole cabinet filled with new medicines that we have never used before, and it’s a bit overwhelming trying to keep it all straight.
Emily’s liver has enlarged to the point hat it fills almost her entire abdomen, and it is quite noticeable. It seems to bother her to sit upright and it’s most likely for just that reason, the liver. Her breathing is shallow and somewhat labored and depending on her position she becomes very short of breath. Again, another balancing act is involved because the doctors want her laying at an incline to help the breathing, but such an incline puts pressure on the liver and her tummy hurts. There is no winning. She has stopped eating, but continues to drink water, Gatorade, milk, and her favorite “bunny milk” (strawberry flavored Nestle’s Quick). We are giving her whatever she wants.
Probably the saddest thing is watching Emily’s interest decline. It started with not wanting to play video games anymore, then not wanting to play with her Nintendo, then not wanting to listen to her MP3 player, and now all she wants to do is sleep and watch cartoons. She doesn’t talk, and for the most part, doesn’t want anyone to talk to her. Her sister tries to help by getting things for us (tissues, wipes, clothes, etc.) and Emily just yells at her. This is none to easy for MaryGrace to take and it is very upsetting for her. This disease truly affects everyone in the family, and it’s sad to see how it has upset MaryGrace. We have people in place to talk to her though when the time is right, and will help her work through all that she is dealing with right now.
A lot of people have inquired about visiting, and while we appreciate the gesture, it is just too hard on Emily. As we mentioned, she is primarily just sleeping now, and for the few hours she is awake, it’s not pleasant. She is either taking medicines, going to the bathroom, or changing positions and then its right back to sleep, no fun for anyone. So we are asking that everyone respect our limited time we have left, and allow us to keep Emily in as comfortable an environment possible.
Please pray for Emily’s peace, pray for our strength, and pray that MaryGrace can cope. Please also keep in mind all of the other children who fight this disease day in and day out.
Until later,
Good Day and God Bless,
David and Diane
Tuesday, May 6, 2008 0:19 AM CDT
Hello Friends and Family,
Today our journal update will be lacking cute anecdotal stories of our precious little Emily. We cannot dig deep enough into our souls to find anything amusing about today’s turn of events and our updates are relegated to nothing more than medical information now.
Emily’s body is chewing up platelets; she’s having nosebleeds, and still not eating. These are the things that brought us back into the hospital Saturday even though we vowed to keep Emily home and comfortable. The problem is, it was explained to us today by our doctor that all of these maladies are not going to get any better. Emily’s liver has more than quadrupled in size since last Monday’s exam, and this is the catalyst furthering her decline. The liver has compressed her stomach, so she can’t eat and this same compression affects her bladder, and soon will cause difficulty in her breathing if it hasn’t already. The years of chemotherapy and radiation combined with the progression of her cancer have compromised her bone marrow to the point that she is all but completely dependent on platelet transfusions just to keep from bleeding out.
This is not the news we were expecting to get on the eve of our discharge. We knew there were problems, and thought we were doing a pretty good job of addressing them, but from what the doctor has said, we are just obfuscating the inevitable outcome. We originally came to terms with Emily’s condition in late February when we were told that there were no more curative approaches to treating her cancer. Since then, we have lived our lives to completely indulge her every whim while maintaining constant medical attention and giving her the greatest quality of life. While it has been taxing to balance the two, we do it gladly and our reward is her every smile. Maybe one too many of those smiles have altered our minds and allowed us to not be so focused on the grim nature of her condition, and savor the happy times we are having. Well, our happiness in making memories has taken a back seat to cancer today, and nothing prepared us for the task we would have to undertake today.
After the knockout punch we got from the doctor, we were greeted by the doctors and nurses from hospice and a discussion ensued that no parent should ever have to endure while speaking of their child. However, at this point there was no hiding from the issue anymore. We did our best to remain composed as we discussed things with Emily lying just feet away on the other side of the room. For almost five years we have taken great efforts to make sure we have never exposed her to fear, so we weren’t about to start today, but I can easily say it was the most difficult thing either of us has ever had to do. The entire travesty of a day concluded with both of us in tears, but trying to not show it, and when we thought it was the worse day ever, out came the papers to be signed. This entire horrible journey of four years and nine months was now to be punctuated with our signatures on a document that is tantamount to a death sentence, and brings about a whole new set of feelings regarding Emily and her disease.
As parents, have we failed Emily? Have we turned our back on her or mislead her in some way? No matter what angle we choose to view this from, there is one underlying feeling that there is no escaping from. Over and above the obvious emotions like fear of loss, sadness, fear of the unknown, anger, there is one thing that is undeniable. That one thing is the all consuming feeling of helplessness that has enveloped every second and every inch of our very existence. The fact that we have sought out what we thought to be the best doctors, best institutions, best pharmaceuticals, didn’t do enough. We still could not save our Emily from this beast that is Neuroblastoma. Indeed, helplessness is a big part of our emotional makeup as we enter this final phase of our journey, and it is none too pretty.
We are thankful for all of you who have been faithfully praying for us over the years, and ask that you don’t stop now. Going forward we ask prayers for Emily to be pain free and worry free, and we ask for the strength to keep her secure as we begin to face the ultimate loss as a parent. We need to maintain the ultimate faith that has kept us positive all these years, and we need the wisdom to not get bogged down in our own pity so that our focus is on Emily and her comfort and needs now.
Until later,
Good Night and God Bless,
David and Diane
Sunday, May 4, 2008 11:29 AM CDT
Hello Friends and Family,
Now that the webpage is working again, we can fill everyone in as to the events of this week. Evidently, Caring Bridge had a problem with their computer, then we had a problem with ours, then Emily had a problem, and now we are back in the hospital.
The week started out with the usual lethargy, and the doctor’s appointment led us to Pediatric Ambulatory for platelets again, and our next appointment was to be Thursday. She got her transfusion, and we were home at a reasonable hour. Emily still wasn’t eating well, and her belly appeared to be quite distended. We just kept encouraging food, and stuck with all the things she loves, nothing new. By Wednesday, she was eating almost nothing and what she did eat, she threw up. As if that’s not bad enough, but this trend continued with all of her meds as well. She couldn’t keep down her nausea medicine, so she was more nauseous. She couldn’t take her pain medicine, so she was in more and more pain. Needless to say, if we didn’t have an appointment for Thursday, we would have gone in anyway because this cannot continue.
Thursday, we loaded Emily up and into the doctor’s we went. Even though she wasn’t eating, she wasn’t in pain, so we addressed the problems with the oncologist and while they attempted to contact the GI docs, we went back for another round of platelets (the second transfusion in 4 days). When platelets were done, we were getting ready to walk over to the GI office when Emily was hit with a wave of pain and started screaming and said it was all in her tummy. I couldn’t even complete the registration paperwork for her screaming, so I got an emergency dose of pain medicine from our bag, and tried to get her some relief. The GI doctors responded very quickly in light of her condition and even had the compassion to waive the customary “exam”, and to save her from even more pain, they sent us straight over for an x-ray.
As the pain medicine went to work, Emily went to sleep, and we awaited results. The x-ray revealed that she was completely impacted, and it was a lot more severe than just constipation. After the doctors all met they felt the best course of action was a complete cleanout via the medicine Half-Lytely. The only problem is getting a seven-year-old who has thrown up everything she has taken in, to drink almost a gallon of this solution, not very likely. We worked on it all night but come ten o’clock at night, she was falling asleep so we had to quit, but picked up first thing the next morning. She spent Friday evacuating, and by midday we were asking for a follow up x-ray to make sure this did the trick. After all, we went through this same thing just over a week before, and thought we cured this with Lactulose so this time we wanted to be sure. The second x-ray revealed that she was completely cleaned out, so things should be getting back to normal soon.
Friday night getting her to eat was impossible, and even fluids all came back up, and from the stress of all the vomiting, she has been getting nosebleeds constantly. We fought through the evening and Emily drank Gatorade every hour through the night and we decided to evaluate her the next morning. Saturday came and as she attempted to sit up, she immediately got sick, and the aforementioned nosebleeds ensued. But now the nosebleeds weren’t stopping and if they did, as soon as she got sick again they came back. We were losing this fight so we called the doctor and asked to get admitted as soon as possible. Once in, the nurses scurried to get all the blood drawn and labs done and in a few hours we found that Emily’s hemoglobin was 5.9 and her platelets were 8, hence the lethargy and the bleeding. We immediately got a unit of blood underway, and once it was done she would get a unit of platelets then another unit of blood when that was done. Just for fun, Emily decided to spike a fever of 100.4 and so in between all the transfusions, now we had to draw cultures and start IV antibiotics. It was a long day/night.
It is now Sunday, and Emily has not eaten in 7 days and even the small amount of water she uses to take her pills causes her to get sick. We have a lot to talk to the doctor about today because we certainly can’t go home in this condition, even if her blood situation is fixed, she has to eat and she has to take her meds. We don’t know what is causing this, but one prevailing theory is the idea that her enlarged liver and spleen have grown to a point that they are pressing against her stomach and intestines and she feels full after even the most minimal intake. But again, we just don’t know.
We ask prayers for Emily that we may not only find out what’s wrong, but that we find out how to fix it and get back home. At this stage, being in the hospital is so depressing for all of us. It disrupts the family, Emily is despondent, and in a lot of instances, they are not really doing anything there that we couldn’t do at home. Also, please pray for all the other little children who are fighting this terrible disease, and for the families of those who have lost that fight. Until later,
Good Day and God Bless,
David and Diane
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Thursday, April 24, 2008 10:30 PM CDT
Hello Friends and Family,
This week is good news and bad news, and maybe some unknown news. The “good” news is that yesterday’s clinic visit revealed a tremendous jump in Emily’s white blood cell count, and ANC (indicator of immune capability/function) and for the first time in a long time, she needed no blood product transfusions. The “bad” news is, we didn’t have an appointment to go to the clinic yesterday, so the tale begins.
After taking MaryGrace to school yesterday, I got home to an Emily who had already wolfed down breakfast and was watching television. She began to complain that she had a full tummy, and I looked at her (as if I know what I’m looking for) and she was right…it seemed full. So, as a parent, I just rubbed it like a Golden Buddha looking for some good luck, and that ever so slight action reduced her nearly to tears. After some thought, I called the only real expert in the house, Diane, and asked if that sounded normal and she seemed concerned too. I said I would call the doctor’s office and see if we could bump our Thursday appointment up to Wednesday, and after not hearing back from the answering service, decided to just get packed up and go. Shortly after that decision, Diane called back and said she was coming home from work to go with me.
We got to the clinic, and after the usual finger stick, we awaited results and Emily had no interest in anything other than sleeping. However, when the results came in, we were elated at the good news. No need for blood, or platelets, and her immune system appeared good enough to go back to school, but we still didn’t know about this pain. The exam by the doctor was grueling for Emily and when palpated around her liver/abdomen she screamed to a level equal to the worst we have ever seen since diagnosis. We were pushing the docs for a quick run over to get a CT and find out what was going on in her tummy, and deal with it out patient. But after the other partners in the office heard those screams, they felt this was not pain that would be managed outpatient and voila, we were admitted. So here we are, back in our old faithful room 430.
We got hooked up and almost immediately Emily got IV morphine, and the focus was to stabilize the pain and relax her, and it took some time to do this. But, once we had her pretty well drugged up, we got news that we had to (1) keep her NPO until further notice, and (2) she had to drink tons of contrast for the CT scan. Tough tasks for a drugged up seven-year-old, but we complied and administered the contrast over the next 3 hours and went for the scan around 6:30 p.m. She did great for the scan, and we went back to the room.
The challenge for the rest of the night was to get her to sleep, and to be patient while waiting for the results…neither was easy. We had some faint hope that the CT would be read during the night and the doctor would call us with some news, any news, but nothing. Then this morning came and we continued to wait for results with anticipation at it’s highest. At this point, any news was welcome, we just wanted an answer. Around 11:00 a.m. the doctor came in, and gave us the report, and it really revealed more about what it is not, than what it is.
The first opinion was that there is nothing overtly evident that would be causing this pain. The “possibilities” of what it could be are all over the road ranging from swelling of the liver to an obstruction in the small intestine. Then, as luck would have it, just as the doctor was leaving, Emily threw up what looked like pure bile and the speculation started that she definitely had an obstruction and how and whether they would treat it became the topic of conversation. Now, the doctor said that Emily was to remain without food until we see if this is a trend, or just an isolated incident, but in either event, we were closing in on 30 hours that Emily has gone without food or water.
In addition to his own input, the doctor was going to refer the scan to the surgeon and the radiation oncologist for more opinions, and so again we wait. Around 7:15 p.m. this evening the surgeon (who did Emily’s original resection back in January 2004) came in with some very unlikely news. It is her sincere opinion that Emily is constipated, but to a very bad degree. It makes sense considering all the narcotics she has been getting over the past month or so. In fact, from what she sees, extreme pain and vomiting up bile are not uncommon, and a laxative is being prescribed for tonight in an attempt to flush her out. In this world of scans, computers and nuclear medicine, it seems too simple an answer for what sounded like such complex problems just hours before. This is not guaranteed, but we feel very good about her (the surgeon’s) judgment and we are a lot more open to a couple teaspoons of Lactulose as opposed to an upper GI or surgery.
Lastly, Emily dropped in her blood and platelet counts so our jubilation for what appeared to be a recovery yesterday was dashed and she got transfusions for both today. So for now, we’ll just see what tomorrow holds. In this journey, we have heard a lot of clichés, and catch phrases over the years. One that comes to mind is, “tomorrow is not promised”. Fact is, we have learned recently that even “today” isn’t promised and that business about living every day to the fullest…is for real.
Please pray for Emily and all the little children in this fight as we seek out healings, miracles, peace and comfort. Until later,
Good Night and God Bless,
David and Diane
Sunday, April 20, 2008 6:46 PM CDT
Hello Friends and Family,
The weekend’s just about over, and Emily has continued to decline. Since we last updated, Emily has gotten several more platelet and blood transfusions, and her counts continue to drop. Her white count as of last Thursday had dropped to 1.0 and her ANC down to 0.5. Both of these are big determinates of her ability to fight off infection, and the numbers are not good. As a result, we have not let Emily go back to school, church, or anywhere that there is a big group of people…especially sick little kids.
All of this news piles up and Emily continues to get sicker, and we just feel a bit upset about the side effects of that oral chemotherapy, VP16. This was published as being of minimal toxicity, little or no myelosuppression, and just overall easy to deal with. This has not been this case, and had we known just what this was going to do to her system, we most likely would have found other ways to ease her pain, and treat her symptoms. As of now, she has almost no immune system to fight off looming infectious diseases; she has mouth sores in her mouth that start bleeding every time she tries to eat, and needs blood and platelet transfusions every 2-3 days, what kind of “quality of life” is that?!? Spending three days a week in the hospital and not being able to go back to school wasn’t what we had in mind.
On a brighter note, Emily did get to take in some school and they went on a field trip to the fishing museum. Needless to say she had a ball being with her teacher and friends (and being out of the classroom) but sure enough, at the end of the trip she got a nosebleed and we had to pick her up from school. The next day we went to the doctor’s and that is when we found out that her counts were still dropping, and there’s been no school since.
Over the weekend, she hasn’t been too energetic, and between nosebleeds and mouth sores, hasn’t had much of an appetite either. We just want her to recover from this “mild” oral chemo she got so we can have our Emily back to the same spunky little girl she has been throughout this battle. What’s more, we want her to recover so we don’t have to fear an infection and endure another lengthy hospital stay. When we made the decisions we had to make, they didn’t include all this. We were balancing pain management, setting her up to go back to school, and she had counts that were equal to that of a “healthy child”. Now, that has all been taken away from her, and while I am sure she has more ambition than to lay on the couch all day, but we can’t risk her catching anything from anybody.
I guess the frustrating thing is that we were used to this overly-precautious lifestyle when Emily was in “active treatment” and we did it day in and day out. But now that things are different, can’t we at least keep her in good health outside of the cancer, and allow her to live a robust life, with joy, and fun?!? THAT….would be quality of life.
Until later,
Good Night and God Bless,
David and Diane
Tuesday, April 15, 2008 2:27 PM CDT
Hello Friends and Family,
Maybe we spoke too soon when we carried on last week about Emily's amazing progress. As it happens, we had a doctor visit last Thursday, and we thought it was going to be a quick “in and out”, but she was critically low on her red blood cells and platelets. So, after the appointment, we headed over to the hospital for a quick “tune-up” and we ended up there until 4:30 a.m. Then, we got through the weekend (a few nosebleeds later) to find out she was deficient again, and had to have the same thing yesterday. In addition, Emily’s ANC has dropped as well as her white count, so this past round of oral chemotherapy has knocked her for a loop.
However, even in the face of the late Thursday / early Friday hospital visit, Emily had to go to school Friday because she was named a “Kid of Character” and the award ceremony was Friday and she looked forward to it for days. So we put her to bed, and we slept for about 45 minutes, then got up and started our day. Of course, after the award ceremony, Emily went home and back to bed. I wish we could have too! She is very proud of her award.
Emily has had some unexplained aches and pains and they seem to change every couple of days, and there is even some numbness and tingling from time to time. So while we cope with these and try to address them with the doctors, there really aren’t any explanations for them. One thing that they did tell us was that Emily is to limit her exercise, running and jumping. Because even though she may feel well enough to carry on outside she could very easily fracture something due to the disease progression, and hence we are back to the quandary of digesting “good news”. She is healthy enough to want to run and jump, but delicate enough to injure herself in doing so. As we have said, this is a tough tight rope to walk, and balancing everything is most frustrating.
This week is a new venture (as is every day right now) and while Emily spent the whole day in the hospital yesterday, she is in school today. The teachers have our cell phone numbers and if there is even the slightest whimper, they will call us, but nothing today. It’s as if she does better having a full plate of activities in front of her because she can’t sit and think about what hurts or bothers her.
We go back to the doctor’s on Thursday, and we will see if she is on a healing trend yet, or if she is still dropping. Either way, we will accommodate her needs, and return her to a little girl life as soon as possible, and let her enjoy.
We thank all of you who are making things so special for Emily from our friends at Disney who make dreams come true to the lunchroom ladies at school who give her free ice cream at lunch as a treat. Everything that makes Emily smile is a blessing, and we are most appreciative. Please continue to pray for Emily and all the little children engaged in this fight. Until later,
Good Night and God Bless,
David and Diane
Monday, April 7, 2008 9:06 PM CDT
Hello All,
Many apologies for the delay in updates, but rest assured it is not because of anything having to do with Emily, just the 21st century plague…crashed computer. So while the hard drive is off at HP being repaired/replaced, we are making due with our 5 year old laptop, which is overloaded itself because we are using it to backup all our data in our main computer.
Enough of the tech-talk though, back to Emily. She is greatly improved since our last update, and it’s to the point we have a hard time digesting the “good” news when we get it. After the way the doctors talked to us about a month ago, we thought there was no good news to be had, but this is not so. Emily’s liver has reduced back down to almost a normal size, her jaundice is completely gone, her pancreatic function is back in normal range, and her white cell count and immune function are equal to those of an otherwise healthy child. Is this a healing, a temporary healing, the result of effective radiation, or the works of VP 16 (her oral chemo, not affecting her counts too much)? We don’t know, and we don’t ask. Emily is pain free and happy and we are indulging her every whim (within reason) until things change. To top things off, she has gained 4 lbs. in the past 2 weeks……go figure, she continues to amaze us.
Since our last update, the girls were flower girls at our friend Amanda’s wedding. Amanda’s mother, Cindy, and Diane have been friends since 8th grade, and in fact, Diane was with Cindy when she gave birth to Amanda. The girls were absolutely beautiful and were completely giddy at the chance to be part of such a ceremony. Our best wishes to both Amanda and her husband Mike.
Spring break has included movies, activities, and even bowling. Of course we paid for that the next day when Emily had arm pain, and we had to giver her pain medicine for the first time in about nine days. She is really improved but with any exertion, she has pain afterward, so we have to monitor what she does. We want her to do what she wants, but we have to watch out for health at the same time.
Emily returned back to school today, and although she was a bit hesitant (who wouldn’t like to stay home and watch cartoons all day?) she had a great day. All her classmates were happy to see her, and were happy with her ¼ inch of “fur” on her head, as she was completely bald the last time they saw her. Tomorrow, the girls have a field trip, so it will be a great day, we are sure. Thanks again, everyone at Embassy Creek Elementary, for all your love and support!
We continue to pray for a miracle, and ask that you all do the same. Right now, faith and hope are all we have and we live by that daily.
Until later,
Good Night and God Bless,
David and DIane
Wednesday, March 26, 2008 10:40 AM CDT
Hello Friends and Family,
The trip was a success and Emily’s health held out for the whole thing. She didn’t have a lot of stamina, and was very tired at the end of the day, but then, that could probably be said for anyone who goes to Disney.
By the time we arrived in Orlando, it was too late to consider going to the theme parks, so we checked in to our hotel, ate and watched TV. It’s amazing how entertaining a hotel room can be to seven-year-olds. They had as much fun playing with the light switches and remotes as they would have in any park. We retired early as we had a big day planned for the girls.
Thursday morning we were greeted with a torrential downpour, and this was to be our first day at Walt Disney World. We resigned ourselves to the fact we were going to have to buy those lovely ponchos and tough it out for the day, because there was a big surprise waiting for us at the Magic Kingdom, and we wouldn’t miss it for the world. Once again our friends at Radio Disney and at Walt Disney World came together to provide a once in a lifetime experience for the girls. Once in the Magic Kingdom, we were led to a big building where there were huge lines. There were hundreds of kids and parents lined up, all with autograph books in their hands, and while we knew “what” we were doing, we didn’t know where we were going. After a series of doors and hallways we arrived in a special studio lined with velvet canopies. These canopies were for each of the Disney Princesses, and all three (Cinderella, Belle, and Aurora) were there to meet our own little princesses. But this wasn’t the usual line of kids crawling up on them to get an autograph then moved along to make room for the next one. Once were inside, all of the doors were closed and the only kids in the room were Emily and MaryGrace and the Disney Princesses spent time with them one-on-one for upwards of thirty to forty minutes. Each princess had a flower for Emily, and they fawned all over her the entire visit.
Later we went to see The Little Mermaid, and were escorted in through the exit ramp (presumably because of Emily’s wheelchair) but once we got inside the grotto, Ariel called Emily and MaryGrace by name, and sat with them for another fifteen minutes, and even let them pick some “thingamabobs” from her treasure chest. The rain had subsided by this time and while it was still gloomy out, the girls were on cloud nine. We cautiously took on the rest of the park seeing not every ride, but rather just the ones that the girls really enjoy. Emily nodded off in between rides, and was becoming noticeably fatigued, so we called it a day around 6:00, and headed back to the hotel.
The next day we went to Disney Hollywood Studios, and on Saturday we hit Epcot, but were completely rained out, so that day wasn’t too great for the girls. Finally Sunday came and the Easter Bunny found his way to our hotel room, and left baskets for the girls. After all the excitement died down, it was time to pack to head home and of course the weather outside was gorgeous… figures. Halfway home we stopped at Grandma’s house and had Easter dinner, then got back on the road to get home, after all, there was school Monday, and an early doctor’s appointment for Emily.
Monday’s appointment revealed that Emily’s bilirubin levels were all the way down to normal now after having been thousands of points too high, so it appears that the radiation really did its job to clear the obstruction in her pancreas. In addition, her liver functions are still too high, but appear to be improving with each blood draw. The tests also showed that Emily needed blood, so we went over to the hospital to get a transfusion, and then went home. Emily has been cleared to go to school, but has not wanted to yet. She feels odd because she is so sleepy all the time, and we think it may just be all the narcotics she is on for the pain. Her pain is quite well managed now, but this lethargy may be the downside of that success. She still has bouts of unexplained pain and tingling in her arms and fingers much like the pain she was having in her knees and feet before. It’s like we solve one problem and another one crops up. However, as of yesterday, the doctor feels it may be a compression on her cervical spine causing pain in her median nerve and radiating down to her fingers. The only way to know for sure is to do another MRI of her spine. Knowing what it is we are facing with Emily’s situation, we didn’t want to put her through another lengthy scan, but we can’t treat the pain if we don’t know the cause of the pain, so that may well be our next move.
Emily is going to try to go to school tomorrow as they only have a half-day and then early release for Spring Break, so we’ll keep our fingers crossed. We would like to thank all of the people who have gone out of there way to make Emily (and MaryGrace) feel better right now. There is our family at Embassy Creek Elementary, Gilbert at Radio Disney, Alex and friends at Walt Disney World, Jennifer Cohen, Michelle Hartmann, the Ziadie family, and so many of our friends who have sent cards, gifts, and well wishes, there are too many to name here.
We ask that you continue to pray for that miracle, and are thankful that the prayers for Emily’s pain free days are answered. She is comfortable, and narcotics notwithstanding, quite happy. We are looking forward to the school break to give her time at home with her sister. Please continue to pray for Emily, and all the little children in this fight alongside her.
Until later,
Good Day and God Bless,
David and Diane
Wednesday, March 19, 2008 12:53 AM CDT
Hello Friends and Family,
WE ARE OFF !!!
The doctor said Emily was okay to travel and we're not sticking around long enough for anyone to change their mind. So to Disney we go.
We will spend Easter with Grandma Ruth in Ft. Pierce, and head home that night.
First thing Monday morning it's back to the doctor to get checked out. From there we'll find out how often our visits are going to be moving forward. One part of the game plan is the beginning of an oral chemotherapy called VP16. It runs in cycles of 21 days on and 7 days off. While it is not considered "curative" therapy, it has shown to slow tumor growth and alleviate pain associated with spreading disease.
Many thanks for the outpouring of kindness and generosity these past few weeks. Especially to Mrs. Sanchez, and all of the faculty and staff of Embassy Creek Elementary who have gone out of their way to support Emily and MaryGrace, and even did a little private fundraising of their own to make our trip even nicer. This is an emotional time, but it's good to know we are surrounded with prayer and well wishes.
Until later,
Good Day and God Bless,
David and Diane
Monday, March 17, 2008 9:29 PM CDT
Hello Friends and Family,
We broke out of the hospital Friday, and made it our business to see to it we had a good weekend. The big issue around leaving was Emily’s eating and not having to remain on IV nutrition, and so it was a gamble. The next big issue was pain management, and it appears that w have that under control as well.
Friday, Emily had no pain and blood work was adequate for us to be home, so all we had to do was wait for the doctor. Once we resolved everything with the doctor, we were released with the understanding that if Emily didn’t eat over the weekend, it was either back in the hospital or TPN (IV nutrition) at home.
Saturday, we just stayed in and Emily was a bit lethargic, and after a few itching spells, she got some Benadryl and it was all downhill from there. She had a three hour nap, and was just sluggish for the rest of the day. That evening we attended a “Relay for Life” and many of Emily’s teachers and the school principal were there, and she became the night’s honoree. She had all the energy as if she were never sick, and laughed all night. Needless to say, she slept like a log that night.
Sunday however, she was full of energy and we filled the day with activities and had a great day together. It was here, that we really saw the need for the pain medicine dissipating, and actually started scaling back to see how Emily did. As it happens, she did great, and we put her to bed after a day of minimal pain meds and improved eating.
Today was radiation (on an outpatient basis) and it went like clockwork, then we went to the doctor’s office to check the blood, and surprisingly, she was fine (as far as “fine is” at this stage) and she did not need any blood products today. Emily’s liver function is still way out of line, and her enzymes are extremely elevated, but she is not in pain, and the doctor felt okay about letting us go home.
As of now, Emily is due for her last radiation treatment tomorrow, and the next day we will get another blood draw. Once we are cleared by the doctor, we are headed to Orlando for “you know where”…and see the mouse. We figure we have a limited window of opportunity while Emily’s health is still good enough to take in this sort of thing, and we aren’t going to wait until she is too sick to travel before doing this.
Therefore, we will be gone from Wednesday until next week when we come home and we will let the girls just go nuts at Disney World. We originally planned to go during the Christmas holiday, but chemotherapy messed up our plans, and we have been putting this off, but now is the time.
So for now, we face the last day of radiation, and are hoping that it is uneventful, and we can go home and pack to go see Mickey. Please pray for good health for this trip, and that Emily remain pain-free as she has been thus far. We also ask for prayers for all the little children fighting right now, and of course, for that miracle for Emily.
Until Later, Good Night and God Bless,
David and Diane
Tuesday, March 11, 2008 9:25 PM CDT
Hello Friends and family,
Not too much new right now, we’re just doing time in the hospital.
We seem to have really gotten a handle on Emily’s pain and as far as abdominal pain it is all but non existent. She still has a good bit in her legs and the least bit of activity really aggravates it. Up to now that has been resolved with a few hits on her morphine PCA pump, and she gets back to normal, but as of a few hours ago, the pump is gone. We are now going to try to control her pain with oral medicines, and tomorrow will be the first full day without Emily’s “magic button” to save her. Let’s keep our fingers crossed!
On the fever front, we know as little today as we did a week ago. They are a little more spaced apart and are averaging about once a day, maybe twice at most. The infectious disease doctors have cultured her blood (both lines) at least 5 separate times, collected stool for cultures, did a nasal wash to collect whatever may be growing in the back of her nose/throat, and as of today, nothing has grown. So while there is no infection to be found, it’s not for a lack of looking, it’s just not there. As a result, all of the doctors are agreeing that it must be a combination of the radiation treatments and what the radiation is doing to her tumor that is causing the persistent fevers.
However, that same radiation must have shrunk the mass that was causing Emily’s pancreatitis because blood work shows her pancreas levels are all back to normal. A bigger reward though is the fact that it has all but eliminated her pain. Her liver enzymes are still elevated, but first things first.
We continue radiation until next week, and at that point we will evaluate our next move. The only thing preventing us from going home (once we know the oral pain meds work) is the fact that Emily won’t eat. She is currently on TPN (IV nutrition) and has no appetite whatsoever. We can’t even force ice cream on her, or her favorite cereal, absolutely nothing.
So these are our challenges, and we still continue to pray. We ask prayer for a miracle cure and for absolute pain relief for Emily as we tackle the day-to-day complications of this horrible disease. Please also be mindful of all the other little children in these same and similar battles.
Until later, Good Night and God Bless,
David and Diane
Sunday, March 9, 2008 0:38 AM CST
Hello Friends and Family,
By comparison, these last few days have been good. Emily is fairly comfortable, but there are still flare-ups and usually in unexpected areas. So, we put out fires, and new ones pop up, but she has had a good couple of days recently. Emily’s blood work continues to get better in most areas, and this is good for her prospects of going home. We won’t bore you with all the numbers but her liver function and pancreas function continue to improve. So, if we can figure out the mysterious fevers that continue up until to today, and if Emily can get her appetite back, we can start making a plan to go home.
Friday after school, Emily’s teacher Mrs. Sanchez (Mama Sanchez to those that know her) came by and delivered a whole pile of cards from all of Emily’s classmates, and even in her weakened state, was outwardly happy.
Tonight, Emily was “de-accessed” for an hour or so and again we got to go outside for a stroll and it was wonderful. She enjoys the activity but it appears that she gets tired shortly thereafter, so we again are adapting to a new set of circumstances. Needless to say, the ensuing bath and encouragement for food didn’t go over as her first choice for entertainment, but the bribe of ice cream thereafter is always a sure bet.
The infectious disease doctor came in again, and while they are looking for a cold or flu, it’s just not there. Emily has no cough, sneeze, runny nose, or any other symptoms that would point to an obviously infectious disease to explain these fevers. To make sure, they ordered a nasal wash (which is no pretty sight) to check, and a stool sample and urine and blood cultures are all out as well. But as of this evening, nothing shows positive, so we wait.
Emily’s pancreatic function levels have greatly improved, and her liver enzymes are improved as well. We don’t’ know what this means right now, but the GI doctor has told us that she needs to start eating, and flush everything through that bile duct so she can cure the liver deficiency, and get rid of that “tan” she has gotten.
We love our ID doc, but the fact he said “she looks cute with a tan” is a test of our sense of humor, and maybe we should be grateful for the levity he provided in the face of all of this. It was very innocuous, and we still just await test results.
Again, we are thankful for all of you who have extended prayer requests for our little Emily, and ask that you keep the faith for our miracle. We still ask prayers for all of the other little children who fight this same fight and their families.
So until later,
Good Night and God Bless,
David and Diane
** The decisions we have recently had to make have all been in the best interest of Emily’s quality of life. While meant with the best of intentions, people suggesting new treatments are just making these decisions and our emotional state more difficult. We have had lengthy discussions with our doctors here as well as the Neuroblastoma team at Memorial Sloan Kettering and they are of the same mindset, there is no form of treatment ahead that would be in any way curative. In addition, our doctors here consult with other cancer institutes around the country, and the consensus remains the same. Emily’s cancer is resistant to any chemo combination on the market, and any other therapy available out there is going to land her in another weakened fragile state in a hospital bed and still arrive at the same end. If we are to reach the same end, we are going to do it with Emily enjoying her life, not with stitches, chemo, nausea, radiation and pain. As we said before, we could chase down experimental therapies around the country and the only life Emily will ever know will be that of illness and pain. If we can alleviate that for her we intend to, and allow her to just be a little girl, even if for only a short while. Therefore, we would ask that well wishers offer support and prayer, not ideas on treatment.**
Thursday, March 6, 2008 9:58 PM CST
Update 3/07/08 ** See P.S. below **
Hello Friends and Family,
Let us begin by thanking the scores of people who have responded to our devastating news with such compassion, care, and love. While we have a new path to travel on this devastating journey, we know we won’t be traveling without support, well wishes, and a lot of prayers.
As of today, Emily’s pain is fairly under control, and other than some very violent waves of pain that come and go, she is fairly comfortable during the day. We are working closely with the anesthesia doctors (pain team) to construct just the right formula of medicines to keep her “pain free” day in and day out. The doctors originally told us that it would take several days to get just the right combination to insure Emily’s comfort and they were right. But we are getting close now.
We feel that a good bit of her pain relief comes from the daily radiation treatments Emily has been getting. It was an emergency plan and was implemented the first day they got Emily’s case. The doctors wasted no time in getting her going and she got her first treatment Monday and has now gone every day this week. They are treating the pancreatic mass as well as her hips & legs, and as I stated, it seems to be working.
We will be consulting with another specialist about whether the radiation, when completed, has reopened the bile duct causing both the discomfort and the decrease in liver function. If not, there is still the option of placing a permanent stent in the duct to insure proper drainage, and get her back on track. This is a bit invasive, and as we mentioned before, we are trying to keep traumatic procedures to a minimum for Emily.
Currently we are battling a series of unexplained fevers. Little by little we are narrowing the checklist of possible culprits, but have again brought in specialists (infectious disease department) to look into the cause and cure. So far, blood cultures are clear, urine cultures are clear, there are no flu symptoms, and as a rule, radiation treatments don’t cause fevers this high. Therefore, we may be faced to look at the idea that it’s nothing more than tumor causing the constant fevers, in which case, I don’t quite know what we do about it.
Other than this, we spend each day in the hospital waiting for more answers, Emily to feel better, and for her to start eating. After all that, we can go home. We can do the radiation on an out-patient basis, and just go in for blood work and checkups, but we still have a few obstacles to overcome before we can entertain that idea.
We are going to try to keep the journal as up to date as possible, so that we can let everyone know Emily’s progress as it becomes available.
Until the next one, thank you again for your prayers and well wishes, and by all means…keep praying for that miracle as well as Emily’s peace and comfort during this very difficult time.
So until later,
Good Night and God Bless,
David and Diane
P.S. - ** The decisions we have recently had to make have all been in the best interest of Emily’s quality of life. While meant with the best of intentions, people suggesting new treatments are just making these decisions and our emotional state more difficult. We have had lengthy discussions with our doctors here as well as the Neuroblastoma team at Memorial Sloan Kettering and they are of the same mindset, there is no form of treatment ahead that would be in any way curative. In addition, our doctors here consult with other cancer institutes around the country, and the consensus remains the same. Emily’s cancer is resistant to any chemo combination on the market, and any other therapy available out there is going to land her in another weakened fragile state in a hospital bed and still arrive at the same end. If we are to reach the same end, we are going to do it with Emily enjoying her life, not with stitches, chemo, nausea, radiation and pain. As we said before, we could chase down experimental therapies around the country and the only life Emily will ever know will be that of illness and pain. If we can alleviate that for her we intend to, and allow her to just be a little girl, even if for only a short while. Therefore, we would ask that well wishers offer support and prayer, not ideas on treatment.**
Monday, March 3, 2008 9:47 AM CST
Hello Friends and Family,
Emily is in the hospital, and it is a very dark day in the Adamson household.
Last Thursday was like the beginning of any typical “chemo week”, and Emily and I packed our bags for our monthly hospital stay. Always the same things, clothes, pajamas, games, snacks, and enough electronics to keep her completely entertained while she is inpatient. Emily had not had much of an appetite for a couple days and she was limping from an exhausting weekend of physical activity, but all was normal. We started at the doctor’s office, and got the preliminary blood work (CBC) which was all fine; we got our chemo orders and headed over to the hospital to be admitted for the five day cycle. Once we got to the hospital, we had to submit for urine evaluation and more extensive blood tests, and so we were just hanging out in the room waiting for the okay to start.
The nurse came in and said there were some inconsistencies in the lab results, and we had to delay the chemo from starting until they could investigate further. We figured it was blood in her urine because the chemo regimen Emily is on causes some bleeding of the bladder. This is usually cured by IV fluids and/or Emily drinking lots of water, so we get a few hours of delay, and sometimes don’t get started until the evening, but this is expected and understood. However, this time it was a little more involved than that, and it was not to be fixed by drinking some water.
Emily’s liver enzymes were through the roof, pancreatic functions were as well and there was a high bilirubin level in her urine. Since all of this is a cause for concern, the doctor ordered a stat ultrasound, and around 5:00 p.m. we went down for the “jelly test” as Emily likes to call it. After many hours of waiting, we were told that there was a “mass” between her liver and pancreas, and this mass was most likely putting pressure on the bile duct and causing all of the things that were showing up in the tests. This seemed simple enough and while concerning, there were options on how to treat it but they were not going to treat it without more detailed imaging, so we were set up to do a particular type of MRI later that night, and scan the area as well as her limping legs. At around 9:00 p.m. that night, we were told the scan would not be done until the next morning, but Emily could not eat or drink until then. The next morning came and there was delay after delay and the MRI people called for us around 2:30 in the afternoon and at this point Emily had gone nearly 24 hours with nothing to eat or drink, cruel at any level, but it had to be done. The scan took 4 ½ hours and by the time everything was said and done we were back in our room about 7:30 at night. A short while later, we were told by our doctors that because of the time of day, there was not a pediatric radiologist in and the scan would not be looked at until Saturday at best, and possibly even Monday. Great, they tell us there’s an emergency, rush us to all of these tests, but then say to sit and wait for 3 days for any results.
Well, as it happened, with the right amount of pressure on the doctor, we got some news Saturday Morning, and it wasn’t good. It ends up that Emily has a 3cm x 3cm mass in her pancreas (not outside pressing against the duct as originally thought) and while it is not completely inoperable, it is a very difficult operation with a lengthy recovery. That is crucial because the surgical recovery time may delay Emily’s start of chemotherapy and the chemotherapy is a must at this point. Well, this is only part one of the scan results because evidently, the radiologist that reads the abdominal scan doesn’t read the leg portion of the scan. At first we weren’t aware of it, but as it happens, the doctors were not going to make a decision on how to treat her pancreatic mass until they knew the results of the MRI of her legs, so again we wait.
Then about 5:00 Saturday afternoon the doctor comes in, and asks us to follow him to an empty room to talk…never a good sign. He closed the door and began to tell us that Emily’s hips, thighs, left knee, and left tibia are packed with Neuroblastoma, and not just a little. It was at this point that the conversation got ugly. He explained to us that even IF they could operate on the mass in her pancreas, what about all the other rampant cancer in her body. I think the exact words were, “why would you want to put her through that?” meaning that there is no way to treat her cancer any further and Emily would spend her last days with huge incision scars, in pain, and most likely knocked out from all the pain medicine, and still have the same outcome as if we did nothing at all and managed her pain and let her just live out her days as a little girl. From this point they would manage her pain, see if they could put a drain in her pancreas to alleviate the inflammation (and the pain that comes with it), and let the disease take its course.
This now leaves us to make a decision that no parent should ever have to make…how do you want your daughter to die. Do we take a chance with the operation, and have her in recovery while the cancer takes over her body because she can’t get chemotherapy, or do we just try to manage her pain, and ring a call bell when she is screaming in pain from the cancer growing in her bones, or do we do nothing and hope for a backup from her pancreas and allow liver failure to take her little body from us? These are scenarios and decisions I would not wish upon anyone in this world, but they are here and we have to decide.
As parents, we have aggressively sought out any and all possible therapies for her, to the point that sometimes we were disappointed that we couldn’t get certain drugs or trials because “Emily was too healthy for this study”, yet here we sit with such a severe onset that we can’t even put her on a plane to try something new because of her condition now. It came too fast and too unexpected, now we are helpless. In the name of looking for other possibilities, our lead doctor here said to us, “Are you treating her now for her…or for you?” We don’t quite know how to answer that either out loud or in our hearts, because she is everything to us, and I don’t know that there is a line you can draw between the two. It is for her AND for us, and we have never wanted anything but the best for her. However, as good parents, we must also realize that if all treatments are going to lead to the same end, do we really want to torture her with surgeries, nauseating chemotherapies, additional pain, and being shoved around the different departments of the hospital to the point she is disoriented? Do we really want to do all that so that we can stand back and say we were good parents, and tried everything? That would truly be selfish, and in time we would never forgive ourselves for putting her through that.
So, as it stands, the doctors here are no longer treating Emily’s cancer, and have agreed to try and keep her pain free through some palliative radiation and pain medicines. We can only pray now for such an absolute miracle that she gets up and walks away from all of this, but this doesn’t look to be the case. So, if we can’t have that we just ask that you join us in prayer for her remaining days, and that she not suffer on any level. No physical pain, no heartache, and have her know until the end how much her family loves her. It has been hard to try and be honest with her about just how sick she is without scaring her. Of course we can’t really tell her how this is going to play out in the end, but she knows the cancer is back, and that Mommy and Daddy are doing everything we can to make her feel better. For seven years old I think that’s as honest as we can be without frightening her, and her sister.
So today we ask prayers for strength to make the right decisions, strength to keep our faith strong as we face this, strength for Emily to keep up her fight as long as God and her body allow, and of course, for that miracle.
Until later,
Good Day and God Bless,
David and Diane
Monday, February 25, 2008 8:00 AM CST
Hello Friends and Family,
It's been quite some time since our last update, but we have remained quite busy. Also, our brand new computer that Santa brought us got a virus and we have been trying to get it back to normal since the crash (so much for the hundreds of dollars in "anti-virus" software, huh?!?).
Since we last updated, Emily completed chemo without a hitch. Since then it has been basic checkups for blood work, and waiting for her to recover. Finally she dropped and needed blood and platelets the same day, so it made for a long night in the hospital. This stay was complicated by yet another problem with Emily's medi-port.
As just a matter of procedure, I asked the nurse to flush both lumens of her double port because it had been a while since she was in the hospital, and we just wanted to keep it working well. The first one went fine, but the second they could not get a blood return from. After about 6 different attempts of sticking her in the chest with the needle (and no anesthetic cream)they gave up and opted use the one good one for her transfusion, and we scheduled for a port-o-gram to see if the other was in fact clotted, then went home...at 4:30 a.m.
The next day, before going to radiology, we went to the clinic first for them to access her port her yet again so they could inject the dye for the scan. We asked the nurse to use the next size larger needle, and both lines worked perfectly. As a result there was no clot, and no trip to radiology. Sometimes what appears to be a catastrophe can be the simplest thing if you can just step back from all the drama and think it through.
Last weekend we went to the MetroZoo, and the girls had an absolute blast. The weather was nice enough that all of the animals were out and about. In Florida, zoos aren't always that good. It's usually so hot the animals are all hiding in the shade or their shelters and the kids are let down because they can't see any of them, but not this time. Then, this past weekend, we went to Butterfly world and it was an equally good time, and educational too.
This week begins with school, then Wednesday we are going to see the Florida Panthers Hockey game. The girls have no idea about hockey (actually neither do we), but Emily knows that some of the players and the team mascot came to see her in the hospital, so that was reason enough for her. Then the next morning, it's back to the hospital for the next round of Topo/Cyclo chemotherapy.
Once we have fininshed this round, we will wait for Emily's blood and immune system to recover (about 2 1/2 weeks)and then we will travel to New York for a full scan workup, and see where we are. Our prayer is that the ICE chemo along with 3 rounds of the Topo/Cyclo have knocked this latest relapse back and cleared her marrow, but if not, we have some very serious decisions to make about how we move forward.
At this point we aren't worrying about what we don't know yet. We just do what the doctors say, keep Emily happy and healthy, and wait for the scans. It's really all we can do at this point without second guessing every possible scenario and making ourselves sick. So please continue to pray for Emily, and all the little children in this battle, and we will continue to march forward.
Until later,
Good Day and God Bless,
David and Diane
Tuesday, February 5, 2008 8:21 AM CST
Hello Friends and family,
After all the mayhem and misunderstandings these past few weeks, it looks like we are back on track.
Emily began her next cycle of Topo/Cyclo last Friday, and she seems to be tolerating it wonderfully. No nausea, no fevers, and if we are lucky, we may be done as early as this evening and can go home. We are going to complete this round, wait for Emily’s counts to recover, and then do one more. After that one is done, and she has recovered enough to travel, we will head back to New York for a full workup and see where we stand as far as future treatment for Emily.
In light of all this excessive testing, and the almost endless regimen of hospital visits, we have been trying to work in time at school and a little entertainment for the girls when possible.
As the picture shows, we saw Hannah Montana last week, made possible by our friends at Radio Disney (Thank you Gilbert), and at this point, I don’t think you could give a seven-year-old girl a better experience. They loved the show, but the next morning, it was back to reality as we came to the hospital to start chemotherapy.
So from here, we just hope for no complications today so we can sleep in our own beds tonight. We really don’t know what’s in store for us after we go to New York, but we are just praying for noticeable improvement (if not complete eradication) of the disease we discovered in November, and a new therapy to knock this monster out completely. Please also continue to pray for all the other little children who are in this fight with us.
Until later, Good Day and God Bless,
David and Diane
Wednesday, January 23, 2008 10:24 AM CST
*** Update 1/25/08 ***
Emily's MIBG was completed this morning and the results came in this afternoon. To quote portions of the report "Markedly improved area in the upper right quadrant, other areas appear grossly stable, and improvement in some" were just some of the comments. The images have been Fed Ex'd to our docs in NY, but long story short, Emily does not have progression of disease, and is actually improving. For this we say Hallelujah, and we sing God's praises. We are thankful for this step in Emily's healing, and are grateful for all of you who have been praying. Through prayer, all things are possible.
Hello Friends and Family,
First off, many apologies for the delay in updates, but life has been a bit hectic in the Adamson household.
Emily had just begun recovering from her last round of chemo (topo/cyclo) and we had scheduled her next round to begin last Thursday. It was just at that time that she decided to give us a big scare, and we still have not really recovered from it.
Last Monday, Emily had a doctor’s appointment that she sailed through and while it is taking a while for her platelets to come back, she was cleared to go to school and do normal kid stuff. That evening, we got home in time to take in the last ten minutes of baton practice and she was happy be able to run and play with the other girls. The next morning, Mommy went to get her up for school, and she began crying and saying that she couldn’t move her leg and she had to be carried downstairs, and even with that, she was in excruciating pain. As if this wasn’t scary enough, this was the same leg/hip that showed so much affected area in her last MIBG scan in December.
Needless to say, everything stopped and we ran to the doctor’s office. We were then ushered over to the ER where we could get the needed tests and scans much faster than the normal route of going through the office. Regular x-rays showed nothing that would explain the terrible pain she was having, and the battery of blood tests that were ordered were equally inconclusive. Next step was to get an MRI and we got in for that around 4:00 p.m. and headed back down to the ER to await the results.
The medical director came to our room, and asked that we follow her to the consultation room because she didn’t want to talk in front of Emily. She sat us down and said “it’s not good, the results show widespread metastatic disease”, and with that we swallowed hard, and tried to continue listening. Once she was finished, and we regained our composure, our biggest question to the doctor was “Is this more than or equal to what we have been treating since November?” She could not definitively say as we would be comparing an MRI to a previous MIBG scan, and they are two different imaging studies, so they couldn’t say. So that night we got Emily pain medicine, and a walker, and went home sick to our stomachs.
So, now we move on to the next step and that is to get a new MIBG scan which will (a) give us an update on how well the chemo is working since we started, and (b) rule out that the cancer is progressing and spreading to the point of causing her immeasurable pain. The problem is, when we get this scan in New York, it takes about an hour and a half, and results follow shortly after, but here, it is every day for 3-5 days and then we have to wait for results. We began on Monday, and will continue until the doctors say they have gotten enough images.
Provided the results say her disease is not progressing (which is what we are praying for) then we are left with the fact we have never determined what caused Emily’s pain. We will probably ask the radiologist to go back and re-read the MRI for any muscular issues that might explain it away. In any event, as of Friday, Emily’s pain has gone away and she has been walking, running, and playing ever since with no pain medicine whatsoever.
Emily had surgery on Thursday to remove and replace her medi-port, and for safe measure, we asked the doctor to do a bone marrow biopsy as well while she was under. This will hopefully help reinforce the findings of the MIBG scan.
Emily went back to school today, and every day after school this week, it’s off to the hospital for her scan. So, as of right now, things are still a bit tense and probably will be until we get results. Those of you who have been following Emily so faithfully we ask you to pray that her disease is not progressing and that the doctors just saw something that we already knew about, and that it’s in fact getting better.
Please pray for Emily and all the little children who share in this horrible roller coaster that is Neuroblastoma. Until later,
Good Day and God Bless,
David and Diane
Wednesday, January 23, 2008 10:24 AM CST
Hello Friends and Family,
First off, many apologies for the delay in updates, but life has been a bit hectic in the Adamson household.
Emily had just begun recovering from her last round of chemo (topo/cyclo) and we had scheduled her next round to begin last Thursday. It was just at that time that she decided to give us a big scare, and we still have not really recovered from it.
Last Monday, Emily had a doctor’s appointment that she sailed through and while it is taking a while for her platelets to come back, she was cleared to go to school and do normal kid stuff. That evening, we got home in time to take in the last ten minutes of baton practice and she was happy be able to run and play with the other girls. The next morning, Mommy went to get her up for school, and she began crying and saying that she couldn’t move her leg and she had to be carried downstairs, and even with that, she was in excruciating pain. As if this wasn’t scary enough, this was the same leg/hip that showed so much affected area in her last MIBG scan in December.
Needless to say, everything stopped and we ran to the doctor’s office. We were then ushered over to the ER where we could get the needed tests and scans much faster than the normal route of going through the office. Regular x-rays showed nothing that would explain the terrible pain she was having, and the battery of blood tests that were ordered were equally inconclusive. Next step was to get an MRI and we got in for that around 4:00 p.m. and headed back down to the ER to await the results.
The medical director came to our room, and asked that we follow her to the consultation room because she didn’t want to talk in front of Emily. She sat us down and said “it’s not good, the results show widespread metastatic disease”, and with that we swallowed hard, and tried to continue listening. Once she was finished, and we regained our composure, our biggest question to the doctor was “Is this more than or equal to what we have been treating since November?” She could not definitively say as we would be comparing an MRI to a previous MIBG scan, and they are two different imaging studies, so they couldn’t say. So that night we got Emily pain medicine, and a walker, and went home sick to our stomachs.
So, now we move on to the next step and that is to get a new MIBG scan which will (a) give us an update on how well the chemo is working since we started, and (b) rule out that the cancer is progressing and spreading to the point of causing her immeasurable pain. The problem is, when we get this scan in New York, it takes about an hour and a half, and results follow shortly after, but here, it is every day for 3-5 days and then we have to wait for results. We began on Monday, and will continue until the doctors say they have gotten enough images.
Provided the results say her disease is not progressing (which is what we are praying for) then we are left with the fact we have never determined what caused Emily’s pain. We will probably ask the radiologist to go back and re-read the MRI for any muscular issues that might explain it away. In any event, as of Friday, Emily’s pain has gone away and she has been walking, running, and playing ever since with no pain medicine whatsoever.
Emily had surgery on Thursday to remove and replace her medi-port, and for safe measure, we asked the doctor to do a bone marrow biopsy as well while she was under. This will hopefully help reinforce the findings of the MIBG scan.
Emily went back to school today, and every day after school this week, it’s off to the hospital for her scan. So, as of right now, things are still a bit tense and probably will be until we get results. Those of you who have been following Emily so faithfully we ask you to pray that her disease is not progressing and that the doctors just saw something that we already knew about, and that it’s in fact getting better.
Please pray for Emily and all the little children who share in this horrible roller coaster that is Neuroblastoma. Until later,
Good Day and God Bless,
David and Diane
Saturday, January 5, 2008 9:51 PM CST
Hello Friends and Family,
Happy New Year!!! We are off to a great start!
Emily’s doctor came back from vacation yesterday, and we just got word that her bone marrow biopsies (and aspirates) were negative of any Neuroblastoma from this last visit. So even though the MIBG scan lit up a number of areas on Emily’s body, this could very well be residual Neuroblastoma that hopefully is dying off from the last round of chemotherapy. The fact that the bone marrows are negative is quite encouraging and lends to the idea that we are headed in the right direction.
Emily just completed Round 1 of Topotecan/Cytoxan. It is a less caustic chemo than the previous chemo, ICE, but still has caused her counts to drop, although not as dramatically. She will receive another round of Topo/Cyclo in another week. She feels great, is eating everything, and has all the energy to play her new Wii that Santa brought her. (Thank you to the Depend-on-Us Foundation).
The girls start back to school on Monday, and we will go day-to-day from there. As of now, they are both ready to go to school as soon as possible, and short of Emily getting a fever and becoming neutropenic, they will be going back to a normal schedule for now. After a couple of weeks of being home, as much fun as all the gifts are, they are ready for some human interaction and time to be with their friends.
We will be going in for another round of chemo in about 2 weeks, and after she recovers from that, we will fly to NY to see where she is in her getting rid of the cancer in this most recent recurrence. If this next round goes as good as the past one, we will be in good shape and will be ready to go out of town shortly thereafter, and await our good news.
We are thankful for the good news and good progress, and we look forward to a little “normal” time for Emily.
We may be “off-line” for a bit as Santa brought us a new computer and there may be a period that we are down while we transfer everything to the new unit. So, if there is no new update, don’t assume its bad news, just that we are without a computer for the time.
Many Thanks to all who continue to pray for Emily, and we ask that you continue for her and all the little children who fight this fight.
Until later,
Good Night and God Bless,
David and Diane
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