Just when we were just again feeling hopeful, we ran into complications with our medical system.  You see, they hadn't yet been able to confirm your diagnosis because they were still waiting on the results of a few of your tests.  We were told that there was a back log at the lab and we may not get the results for at least a month.  Pardon?  I don't think I heard correctly.  How can a human life not be enough to get immediate results.  If we wait any longer it may be too late.  We've been told that as each day passes your brain would degenerate more and more.   We couldn't afford to waste any more time.  We would have to take matters into our own hands.  I'm sorry but your life is the most important thing and it is cruel, cruel for there to be such a wait for results.  Telling us that there was a backlog is not good enough, is a child's life not priority enough?  If there are so many tests on backlog, who is actually getting results????  Please, please, please help our daughter, keep her beautiful face smiling...

The number one road block through this whole thing has been our dreadful political & medical system.  There would be at least a month's wait for your test results and the doctors were hesitant to release any information to Duke as there were conflicting ideas of diagnoses.  Neurology were certain that you had Krabbe's, however, Biochemical Diseases were not convinced, they thought it could be a number of different things (possibly mitochondrial?).  No one was willing to release your MRI results to Duke as they were apprehensive about relinquishing control until a diagnosis was confirmed.  They said that if we were to proceed with transplantation and it turned out not to be Krabbes that the results could be fatal.  The Biochemical Disease physician was also not certain that transplantation was a good idea as there was already too much damage to Chloe's brain and that she would probably die from such a procedure.  He wanted us to know that transplantation was not a cure, that it could not reverse damage that had already taken place and that if she did survive she would probably live in a vegetative state.

We wanted you alive, so if transplant would keep you with us then that's what we'd do (this was our initial reaction - we wanted you alive no matter what the cost ).  But knowing what we know now, seeing precious children suffer so much from this horrible, horrible, ravaging disease, we now believe that until you are in such a situation you just don't know what you would do - so anyone who thinks that they would do a certain thing if such a thing happened to them I wouldn't be so sure - you never know what you will do until you're actually there and you live through such pain.  I would never want our sweet little Chloe to have to endure unimaginable pain and suffering all because we were too selfish to let her go.  What is best for our sweet darling Chloe, what would you want my darling?  At what point do we let go and let God do his will?  When is too much, too much?  We love you more than life itself, Chloe, and we would do anything to keep your suffering to a minimum.  But if the transplant was the only option out there and if it truly was the best thing for you and the quality of your life (because realistically with transplant or not both options are devastatingly hard on these sweet little bodies).  We would continue to fight with the doctors here so that we could pursue the transplant option further...

Your mommy & daddy did everything we could to get your test results expedited, every day your mommy hassled the doctors and lab technicians and offered whatever money was necessary (no - bribery does not work in Canada).   Finally after 3 weeks, we were told that the results would be ready in 3 more days (they were waiting for your skin biopsy to culturize - apparently it takes 3 days for enzyme testing as it is done in 2 parts).

All of the anxiousness and impatience to get the test results as soon as possible, but do you think we were actually ready to hear what we were about to hear???  Of course not...

The next words from the physician are embedded in my brain as if I were hearing them over and over every day since, " Your daughter tested positive for Krabbe's Leukodystrophy ".

It was supposed to be a mistake, this had all been a dream, right?!?!  Sorry, not this time.

Well, we would just have to go ahead and proceed with the transplant.  We would call Duke University and set everything up and we could be ready to fly out the next day.  Little did we know that our physician would call back to tell us that they can do the transplant here in Vancouver, British Columbia, at the Children's Hospital.

We met with the Director of the Transplant team, here in our hometown, the next morning and he said that he would send Chloe's MRI to Duke University for assessment as BC sends all of their test results down to Duke as they have the best screening and evaluation process.

The Transplant doctor here called us and said that he had heard back from Dr. Kurtzberg at Duke and it it did not look like Chloe was a good candidate for transplant.  The MRI which had been done in September showed that Chloe was in between, meaning that in the weeks that had since passed she would probably no longer be in the gray area but that they would do another MRI just to make sure.  The doctor said that we should know that he did not believe that Chloe would survive a transplant and if she did she would not have a nice life, she would be severely affected and if she did survive the transplant she would most likely live in a vegetative state.  He said that if we were still wanting to risk a transplant that he would support us in our decision but not until another MRI was performed.

That night Dr. Kurtzberg at Duke called to confirm what our doctor had told us that morning, that she did not see Chloe as a good candidate for transplant and that the chance of her surviving the procedure was not good.  She too provided comfort and said that she too would support us, whatever decision we made.  She said that if we decided against transplant that she knows of children who, with a lot of love and excellent care, have been able to live longer than what is expected of children with this disease.

How can we make such a decision.  What is best for Chloe, what would she want?

Please God, please help us know what we're supposed to do...

I think within our hearts we already knew the answer but were we willing to accept it?  With sadness in our hearts we made the most difficult decision we've ever had to face, no, we wouldn't put our sweet little angel through the transplant, especially knowing that in so doing we would risk putting you through unimaginable suffering and all at the risk of losing you through the process.  We would continue to love you, enjoy you, read to you, play with you, sing to you and keep you comfortable.  Above all else we would share the amazing miracle of your life with our family and friends, you bring us all so much joy.

Chloe, you truly are a gift from God and we are blessed to have you in our lives.  With every breath you take and every endearing smile or blink of your beautiful green eyes, you show us the true meaning of LOVE.

You had a Nasogastric (NG) Tube placed through your nose, down your throat and into your stomach as you are not able to get the necessary calories in a day due to the difficulty you were having with breastfeeding and eating and swallowing orally.  You poor sweet angel, the ng-tube is definitely not a nice thing to have going through your nose, how uncomfortable it must have been.  But it wouldn't be for long, you were scheduled to have a Gastrointestinal (G)-Tube placed in about 2 weeks time.  We made the decision to go ahead with the G-Tube as it would be more comfortable for you and it was better for you to have surgery while you were still relatively strong, rather than waiting until there was a greater risk of putting you under anesthetic.

You were scheduled for G-Tube surgery at 9:15am and due to the unfortunate state of our medical system, you would not go in for surgery until after 3:30pm.  I last fed you at 4:00am and because you were required to fast 6 hours prior to surgery they would make you wait over 12 hours before they even put an IV of fluids into your starving & dehydrated little body.  It is appalling how because of government and political strife that human compassion is somehow lost.  How could they put a baby through such treatment let alone adults, at least adults have some understanding of what is going on.

At about noon, your daddy & I had had enough, we decided not to go through with the surgery, we just couldn't let you suffer one minute longer.  We thought that we could continue on as we had been with your ng-tube, nothing was worth letting you suffer this way, we had just worked so hard to put weight back onto you and they were starving you again!  We bundled you up and were on our way out when the surgeon came out and asked us to please reconsider going ahead with the surgery.  For a rare and fleeting moment in our healthcare schmozzle we witnessed true humanity and compassion.  This dear surgeon (or shall I say dear man period - a wonderful human), showed true concern for our daughter, he apologized for the state of our healthcare system and he truly showed how sorry he was that Chloe was made to suffer.  I cried for Chloe, I cried for the mess we were in and I cried for this dear man who showed true empathy, it was about time someone saw our sweetie for who she was, a beautiful, amazing human being.

Dr. Murphy promised that he would get Chloe in for surgery within the hour, well it would be a couple of hours but he tried his best.  General hospital protocol states that if the child is under one year of age a parent cannot accompany their child into the surgery room while they administer the anesthetic because of the risks involved.   With babies they need to have full, uninterrupted concentration because the dosage is so important.  However, under the circumstances they wouldn't dare say no to me after what we'd gone through.  I was allowed to go in with you until you fell asleep.  I laid you on the table, kissed your warm, flushed pink cheek, told you I loved you, would see you soon and I quietly exited the room.

I prayed that I would see you again when you awoke, always in the back of my mind (okay who am I kidding - in the front of my mind) there is this haunting thought that my sweet angel would not wake up after being under anesthetic.  I should really have more faith!!!

A half hour later you did awake and I ran thru the halls so fast I almost missed the doorway.  I met you in recovery and you were so upset.  I attempted to apologize to you but no matter how many times I said I'm sorry it would take much more to make up for what you had to go through, "I'm so sorry my darling, sweet angel, PLEASE FORGIVE ME."

We would end up sharing a room with another little girl, Mackenzie, who also had g-tube surgery.  Mackenzie, it turns out, was born 5 days after you and she has been ill since birth but they don't know why.  She is the happiest and most beautiful little girl and they too have gone through all of the tests you have been through Chloe, the MRI, LP, CT Scan, etc. but all have come back normal.  Little Mackenzie only weighed 12 lbs at the time of the surgery, the same that you weighed Chloe, when you were just 2 months.  We immediately felt comfortable with Mackenzie's parents, Carolyn and Darryl.  We stayed up that night talking about our daughters and our medical experiences.  We had been faced with great challenges, but we just have to HOPE, hope that there is a reason, that there is a greater plan for us all and that there will be a time when our children will not have to suffer as they have, whether it be in this life or another.

The second night in hospital another little girl, Oriana, and her mother, Maria would join us.  Oriana, like Mackenzie, had not yet been diagnosed.  Oriana too had been sick since birth.  She weighed only 4 lbs at birth and unfortunately everything that she eats goes into her lungs.  She also has a habit of holding her breath until she turns blue.  They believe that Oriana has a chromosomal disorder but are not sure what?  It is so sad seeing these sweet little girls going through these difficulties, but it is so wonderful sharing such love and strength with one another.  We would keep in touch with these wonderful new friends we'd met, sometimes it really does feel as if things happen for a reason and that chance meetings aren't just by chance, but FATE.

Each day that passes I fall deeper and deeper in love with you.  Do you have any idea how amazing you are?

It's Christmas Day and I'm so terribly sad.  I didn't want to be sad but I can't help it, I'm just so very afraid... afraid of time.  Time is going too fast and I want it to stop.  For as long as I can remember I've tried to rush my life along.  When I was in high school I couldn't wait to graduate and gain my independence.  Then I did graduate and moved away but then I just wanted to step ahead to the next step.  I met your daddy, fell in love, and wanted so much to be married.  We married and still that wasn't enough, I wanted to be a mommy... I keep thinking that the next step, the next day will bring the happiness I so long for.  But not until you were born did I realize that TODAY is the gift, today is the blessing I should have been cherishing all this time.  Now I pray that tomorrow will never come, I want to live in this moment forever.  Each day that passes I can feel you slipping away and I can't bear it.  I need to hold you and know that you will always be in my arms.  How can I possibly exist without you?  Please tell me how I can get through today knowing what tomorrow brings?