Sunday, October 26, 2008

I must share a letter I sent...

to the television show "The Doctors" after I watched an episode that aired on 10/22/2008 about parenting. I don't know if these people will even read the letter, but I could not just sit by and watch these doctors advise millions of people about a subject they clearly know little about. That subject is cord blood donation, something that I'm (obviously) quite passionate about. I am afraid of what kind of damage that these doctors have done to cord blood donation programs with their unresearched and flippant remarks, and so I do hope that my letter is read and will inspire them to make things right.
Thanks for reading.

To whom it may concern:
My name is Sarah Kelly White and I have a 15 month old daughter named Gracie. Gracie was diagnosed at 6 months of age with a rare metabolic storage disorder called Mucopolysaccharidoses (MPS) type 1 – Hurler’s Syndrome. Hurler’s Syndrome is a fatal genetic disorder caused by a defective gene that is responsible for producing an enzyme called AlphaL-Iduronidase which breaks down the mucopolysaccharides. In Hurler’s patients, there is no enzyme being produced and therefore metabolic wastes are being stored in the cells causing them to destroy themselves and most of the patient’s vital organs. Without treatment, children with Hurler’s Syndrome generally die by the age of 10 following a long decline in functioning and severe mental retardation.
Thankfully, there are treatment options for patients with Hurler’s Syndrome. First, there is an artificial enzyme which can be given through IV which will slow or stop the deterioration of the cells and organs, however it cannot cross the Blood/Brain Barrier, so it is not ideal for long term use. The other option is a Stem Cell Transplant using either donated Bone Marrow or donated Umbilical Cord Blood. This is the best treatment going as it can save the patient’s life and also their quality of life. My husband Jim and I chose this option for our daughter, and she underwent a transplant of donated umbilical cord blood on May 8, 2008. As of today she is almost 6 months post-transplant and doing very well.
On the Daddy Boot Camp episode of “The Doctors” which aired on October 22, 2008, an expectant couple posed a question to your panel of physicians about banking cord blood. He specifically asked if they should privately bank their baby’s cord blood for future use or if they should donate it to a public cord blood donation facility. I was shocked and appalled when I heard the responses from Dr. Jim Sears and Dr. Lisa Masterson. They both agreed that this couple should privately bank their baby’s cord blood because public donation sites are few and far between. They then went on to laud the private banking option and stated that it would be “worth millions” if they should need it later.
I sat stunned for a minute in disbelief that this panel of doctors who were chosen to give medical advice to millions of people via television would give such irresponsible and inaccurate information. According to the website for the National Marrow Donor Program (, there are hospitals in at least 20 states who offer expectant mothers the option of donating cord blood. While it’s not offered everywhere, it is offered in more than just “a few places” which is what Dr. Masterson said on the air. If the mother’s chosen birthing hospital is not listed, they can contact Cryobanks International who accepts donated cord blood from anywhere in the continental U.S. to be listed on the NMDP registry.
Private Cord Blood Banking is expensive and in most cases, it’s useless to the family who is paying to bank it. The AAP states that the chances of a child needing his or her own cord blood stem cells in the future are estimated to range from one in 1,000 to one in 200,000. Private cord blood banks target parents at an emotionally vulnerable time when the reality is most conditions that can currently be helped or cured by cord blood stem cells are treated by providing a necessary component from the donor stem cells which is lacking in the patient's own cells--for which a patient's own cord blood would be useless.
The American Academy of Pediatrics, of which Dr. Sears is a member, has publicly stated that they encourage the donation of umbilical cord blood for public use. The AAP openly discourages private cord blood banking unless there is knowledge of a full sibling in the family with a medical condition (malignant or genetic) who could potentially benefit from cord blood transplantation.
The American College of Obstetricians and Gynecologists has also publicly stated that OBGYN’s should be advising patients of the option of cord blood donation and giving them accurate information regarding the usage of privately banked umbilical cord blood and the very slim chance that the banked blood will actually be used for that child or a sibling.

Both the American Medical Association and the American Society for Blood and Marrow Transplantation have also made similar public statements advising physicians to encourage expectant parents to donate their cord blood to a public bank as opposed to privately banking it.
Considering all of the public statements from these highly respected organizations and the availability of all of this information on the internet, I find myself wondering how Dr. Sears and Dr. Masterson could give the couple on the show these recommendations in good conscience.
The basic fact is that these doctors have now provided the Cord Blood Donation Program with yet another hurdle to overcome. Considering the wide scope of the potential viewing audience, Dr. Sears and Dr. Masterson have told millions of people that it’s just not worth it to donate your cord blood to someone else who needs it. For parents like my husband and me, the implications of this type of attitude and carelessness are grave. The irresponsible and ignorant remarks that were made by these doctors may have cost hopeful families that “perfect” or even “good enough” cord blood match that their child so desperately needs to live. And just like anything else, as the demand for these centers increases, more will become available to meet the demand which will offer even more people the opportunity to donate their cord blood.
I hope that those who receive this letter will do the truly right and responsible thing and rectify this situation by any means necessary.

Copied to:
Dr. Jim Sears, The Doctors
Dr. Lisa Masterson, The Doctors
Dr. Phil McGraw, Executive Producer , The Doctors
Dr. John Wagner, Head of Pediatric Stem Cell Transplantation, University of Minnesota
Dr. Paul Orchard, Medical Director, Inherited Metabolic and Storage Disease Blood and Marrow Transplantation Program, University of Minnesota
Posted publicly on

Dear friends...

Please pray for one of our transplant friends from Minnesota. His name is Kamran, and he is such a sweet little boy. He used to play with Gracie and share toys with her during the weekly bingo nights and his parents are kind and friendly people who never failed to share a smile with others, even on the bad days. Right now Kam is on a ventilator and he's been having a hard time battling infections and Graft vs. Host Disease. Please lift Kam and his parents, Kelli and Bahram, up in your prayers.

Much Love.

Monday, October 20, 2008


Its not often that individuals get to experience they type of outward support and love that we have been shown since we began this journey. Our families, friends, and especially our church family have given of their time, talents, and hearts in a way that humbles both Jimmy and me. Although the road we are walking is a difficult one, we walk it with complete understanding of the support system that God has so generously blessed us with, and despite the hardships, we are so thankful to have had the opportunity to see love in such a tangible form.

This past weekend we celebrated with friends and family as they again came together to support us with a party and silent auction in honor of our Gracie. It was a night of fun and laughter, and Gracie was as charming and smiley as ever. Our girl has touched so many, but it is us who have been given true enlightenment. We could never begin to express our thanks to the many loved ones who have supported us through our ordeal, and our hearts remain full of peace and hope knowing that no matter what, we will be held tight in the arms of such loving comfort.

Thanks to all who love our Gracie and us.

Tuesday, October 14, 2008

Back home

Just a very quick post to let you know that gracie is back at home. Sarah said Gracie is ecstatic to be able to crawl around and chase the kitties. We're glad she's home.

The last few cultures have all been clear, so we are cautiously confident that the bug is gone. Gracie will have a few more cultures across the week to monitor.

Next big exciting thing is the trip back to MN for the 6 month check up. Seems like there will be a lot of Hurler families there at that time. In fact, Sarah said that there might be some sort of transplant reunioin.... I don't know and details, but I wish Gracie and all of the others the best of luck.

Thanks for keeping up with us. :)

Monday, October 13, 2008

Quick Update - Still Waiting

Howdy. Gracie ad Sarah are still at Wolfson's in Jax. I have nothing new to report other than that. They should have more news tomorrow. I did check in with the docs in Minnesota to verify that wolfson's is on the right path. I sent a message at midnight last night, and by 1:00 Dr orchard responded. How awesome is that! Anyway, he reassured me that they are doing what would be done in Minnesota if she were there.

Sunday, October 12, 2008

What is gram-positive bacillus?

Just a quick science post for all those who might be interested...

"Gram-positive bacillus" is more of a description than a diagnosis. "gram-positive" means the bacteria show up when stained with "gram stain"--a purple stain used to make bacteria show up better on microscope slides. "Bacillus" is a description of the shape of the bacteria. Bacilli are "rod-shaped" bacteria.

Other than that, there is a list as long as your arm of species of gram-positive bacilli. They are mostly harmless--mostly.

Gram-positive bacteria have weaker cell walls than the gram negative kind (the weaker cell wall happens also to absorb the stain--neat trick, huh?), and so are not usually the dangerous kind. "Gram-negative" bacteria tend to be tougher, and those are usually the ones that are human pathogens.

Only two Bacillus species are considered medically significant: B. anthracis, which causes anthrax, and B. cereus, which causes a foodborne illness similar to that of Staphylococcus. If any of you docs out there know of any other bacillus baddies, please report them immediately to Wiki. ;-)

Now I'm all the way up here in Philly, so I don't know first hand, but I would venture to guess that we're talking about B. cereus in this case. I seriously doubt that the folks on Gracie's medical team would be behaving in such a cautiously lackadaisical way if she had anthrax...

Saturday, October 11, 2008

Hospital update

Just wanted to give everyone a quick update. Gracie's second culture also had a gram positive Bacillia, which is some sort of bacteria. A staph or something similar. Weird thing is that she has no fever and is bouncing off the walls in that hospital. The infectious disease doctor came by and sounds like she thinks the infection might bed in her catheter. They should know what the bug tomorrow, and will know if ots in the line or her body by Monday. I'm a little concerned by the lack of urgency on their behalf, but not sure there is much I can do about it. I plan to email Dr. Orchard tonight to see if he has an opinion on this.

Good news is Gracie seems to feel great. I'll keep you posted on her progress.

Uncle Mack

Quick Hospital Update

Gracie is at Wolfson Children's in Jax. I was there last night to see her and she looked fantastic. She was happy and playing, and wanted nothing more than to get on the shiny colorful floor and play, but no no no... No floors in the hospital. They have a big oval shaped crib with a big clear, tinted plastic "hood" over it. She loves to pull herself up and cruise around it (she even completely let go once). She also loves to bang on the plastic hood. :)

It has been a couple of months since I've seen her and she looks so much better. First off, she has a full layer of hair on her head. It's short, but dark. Also, one of the anti-rejection meds she takes makes her furry all over. She has a nice layer of fur on her back and shoulders... very cute. I wish I had taken anti-rejection meds when I was in high school and college. I would've dated a lot more (bu-dum-ching). Not sure how namy of you remember what a monchichi is, but she looks eerily like a monchichi.

On to medical stuff. While still not 100% sure, it sounds like the positive culture was for a skin staph infection. I'm no doctor, but it sounds a little odd that a skin infection would show up in a blood culture, especially when Gracie has no open wounds or anything. Our current best guess is that the sample the collected was contaminated between the time they drew blood and the time they started the culture. They took two additional samples to see if anything shows up.

Regardless, giver her weakened immune system, the safe call was to admit Gracie and fill her up with powerful anti-biotics. She'll be in the hospital for a couple more days until they can rule out the infection.

Thanks for checking in.

Friday, October 10, 2008

Back in the hospital

Noni called me this AM and told me that the lab at Nemours called and that something grew on one of Gracie's cultures. I'm not sure of any details, but the asked Sarah to pack up and come to the hospital in Jax. Hopefully nothing to panic about, but figured you all would want to know...

I think they'll be at Wolfson Children's. The plan is to stay there for at least 2-3days. I'm sure they'll want Gracie on some high octane antibiotics to help her fight whatever grew on the culture. Hopefully she'll be discharged shortly, but this is a good reminder to keep on our toes.

Please say an extra prayer for Gracie across the weekend. We'll update as we learn more.

Uncle Mack

Fun times with Gracie...

So, Gracie's appointment on Tuesday went well. We got there and first thing we got great news that Gracie had not only maintained her weight, but she had gained weight despite having her TPN reduced! We were so excited- and so was our Nutritionist!

Gracie had a quick meeting with the doc who said she looks great, followed by her routine blood draw. She also had a repeat RSV culture (from her nose). As has become our routine, we stuck around in Jax to make sure that the blood draw was sufficient for accurate results before heading home. We got a call from our nurse and she told us that it was all good and we could head home. Also, her RSV test was negative! Yay!

We got home from our long day and Gracie immediately settled down for a long nap. When she woke up, she was screaming her head off and when I went to pick her up, I noticed that she felt warm. Oh no- not again. We took her temp and again she had a fever of 101.5. We called back over to Nemours and got Dr. Joyce on the phone and it was a dose of Tylenol and back to the Lake Shore ER for Gracie. She had another round of cultures drawn and was again given an IV antibiotic. The next morning her fever was down, but our doc sent us back to the ER for one more dose of the antibiotic again. Since then she has been fine and her normal sweet self and no fever to be found. Nothing has shown up in her cultures either. No one knows why she spiked the fever, but everyone seems to be in agreement that Gracie is ok. My personal opinion is that Gracie has become dependent on her daily routine.... she is like a finely tuned weather instrument, as Uncle Mack would say. :)

On Tuesday, our clinic day in Jax, Gracie's routine was clearly disrupted. First of all, Gracie is very "regular", if you know what I mean. She basically has a pooping schedule that begins first thing in the morning and then happens at least once or twice more throughout the day. (I hope I am not grossing our loyal readers out with this lovely topic.) Well, on Tuesday, she didn't poop at all until well into the evening. This is a huge deviation from her schedule. Follow that with a long day spent mostly strapped in her carseat and you have a baby who doesn't feel so well. Since then, she has been back on schedule and happy as a clam, so who knows. We're going to see if maybe coming straight home after our next appointment will help. I certainly hope so.

Also, the best news came yesterday. Our Nutritionist called and asked if we were feeling adventurous, and despite our fever adventures, we told her we were. So I am pleased to announce that I hooked Gracie up to her last bag of TPN tonight!!!! Woohoo! As of tomorrow, Gracie will finally sleep without being attached to any tubing or pumps. I am so excited! Of course, we will be really pushing the food and fluids on Gracie to prevent having to restart her TPN regimen, but for now, we are so pleased that she is making such excellent progress and taking huge strides in her recovery.

So to end this long post, here are the pictures I promised. Smile and enjoy.

Monday, October 6, 2008

No news = Good news

But thats no excuse for yet another slack in posting. Sorry all.

Gracie continues to do well and is still not showing any visible signs of RSV. We go back to Nemours on Tuesday and I am hoping and praying that we will get a negative RSV test so that we can celebrate Gracie's official germ-kickin' immune system and get back on course with getting our Speech and Physical Therapies going and getting out and about again.

She is eating and drinking very well these days. So well that her TPN just got reduced to 10 hrs a night from 12. I'm hoping that Tuesday will bring another good weight and the chance to take it down again to 8 hours! How wonderful would it be for Gracie to be tube free every night??? She's working on it and I couldn't be more proud of her.

Her hair is coming back in full force... she just gets fuzzier and fuzzier. She officially needs a haircut now. Its starting to grow over the tops of her ears. She is just so cute and fun to be around these days. She's crawling all over the place and pulling up on everything. As soon as she figures out how to keep balanced, we are going to be in trouble... she wants to walk so badly.

I've been snapping lots of cute pictures of her lately and I hope to post a few tomorrow if I can. Stay tuned.