September

Most of the year I don't think too much about Austin's medical issues. They don't affect our lives all that much on a daily basis and I suppose it's natural to try to put unpleasant things out of your mind. Even when I meet other parents of babies or children with large nevi and try to raise money and awareness I still don't think of Austin as having a serious condition that will be with him all of his life and could shorten his life. I'm pretty successful at this until it is time for his annual MRI of his brain and spine. I am ashamed to admit that this year I put it off as long as possible, partly because this time he required general anesthesia instead of what we usually do which is called IV sedation. He usually goes to an outpatient clinic where they hook him up with IV medication and he has the MRI there. It is not far from our home and we have gotten to know the people there over the years and feel somewhat comfortable there, as comfortable as you can be at a medical facility. But last year the anesthesiologist informed us that Austin woke up several times during the study and as a result he strongly recommended that we do not attempt an MRI with only sedation again, he should be put under a general anesthetic in order to get the best result and to prevent having to redo the MRI. I was very upset at the idea of putting him under and therefore procrastinated and did not have the MRI done until late July. On August 3 we went to see Dr. Tomita who once again informed us that there were no changes in the MRI, in the spots or with the hydrocephalus. Obviously great news, and it makes me feel ridiculous for the emotional turmoil I put myself through for the preceding several days. Even though I saw no signs of any ominous changes in Austin and I knew he had been doing great developmentally, just like every year I panicked right before the MRI. The what-if's take over my brain and memories and feelings from that September four years ago come rushing back. Too many children have been taken by NCM in the past 4 years and it's so hard to believe that Austin is still here with us and doing so well.

September is hydrocephalus awareness month. If I would have had any awareness of hydrocephalus 4 years ago I think I could've avoided some pain for Austin and possibly some of his early developmental delay (in gross motor skills). But all I can do now is hope that I can help someone else understand and help share what I know to help parents of children with NCM or hydrocephalus, or both. The only way I know to do this is to share Austin's story with everyone and hope that they understand hydrocephalus better, as well as the strange and rare condition that caused it so we can someday find a cure for both.

As a coincidence, September is also childhood cancer awareness month. Four years ago this week we were told that Austin had an extremely rare and incurable form of brain cancer called leptomeningeal melanoma. I'll never forget the day the oncologist used that term and I said "what's that? I thought they said he had neurocutaneous melanosis," and the look on his face when he told me that at this point we are hoping he *only* has neurocutaneous melanosis. Even though not many survive NCM with hydrocephalus, leptomeningeal melanoma is worse. And that night when he called me from the train after meeting with the tumor board, saying we should have a catheter implanted in Austin's chest for chemotherapy at the same time when his brain biopsy was performed, but he completely understood if we choose not to do chemo because at his age (one month) it would be terribly hard on his little body. In my mind he was saying he had no chance and that the humane thing to do was let him die peacefully. That seemed like the final blow to our hope after so many days of bad news and worse news and hospice nurses and chaplains and little booklets telling us how to arrange his funeral and doctors talking about him in the cafeteria like he was a lost cause. Thank God we also had a neurosurgeon who knew better than to jump to conclusions about anything and insisted we get the biopsy results before even discussing chemotherapy because as you all know he did not have cancer. And as soon as we got home from the hospital, especially after the shunt revision but even before we knew he didn't have cancer, he was such a different baby. Smiling, happy, interacting with people. I knew a baby who was dying would not be thriving the way he was. I always said we just want all the time we can get with him and all I ever asked God was please don't take my baby. Every year at this time I find myself saying it. I'm glad September is over.

After shunt revision

Home after first shunt

In the hospital in critical condition

Amazing 3 year old

It's hard to believe but Austin just turned 3! Besides just being amazed that my baby is starting preschool and 3 years have gone by, three years ago we were told that he had a 10% chance of living to be 3 years old. We celebrated his birthday with our fantastic group of family and friends. This is a video of Austin's friends singing Happy Birthday to him!

In July we were lucky enough to attend the 2010 Nevus Outreach Conference. This year it was again held in Dallas, TX. We spent several days visiting our dear friends in Austin (yes Austin is named in honor of the city of Austin!) and then came to Dallas to spend the rest of the week with our wonderful Nevus family. It was wonderful to return to the conference having 2 more years on this disease and a lot more hope and optimism. Of course we also enjoyed seeing all of the great people that we met 2 years ago again, and spending time with parents who truly understand our situation. We were extremely fortunate to hear from and have one on one consultations with some of the world's top experts on large nevi and NCM. I had the opportunity to sit in a small discussion over drinks one evening with several of the world's top experts on nevi and other parents dealing with NCM. Priceless. Genetic research currently being done in England sounds very exciting and groundbreaking. Many participants at the conference (parents & children) had their blood drawn in order to contribute to this research (though we didn't because Austin wouldn't comply). We have always been told that the condition is not hereditary but apparently new research is proving otherwise. Not that parents and children both have giant nevi or NCM, but that they may be passing down a gene that causes the condition in the right circumstances. The research is being done by Veronica Kinsler at Great Ormond Street Hospital in London. She even introduced the concept of "CMN syndrome"- the idea that our children having large/giant nevi is just one of a collection of symptoms that all fit together- for instance, that many (most) of them have similar facial features. Sounded crazy until she started putting pictures on the screen that really did look alike and guess what, really did look like Austin. Even more amazing, she said they may have identified the gene that causes this syndrome! There was an overwhelming feeling that day that a lot of earth shaking (at least to those in our world) information is coming down the pike very soon. It was extremely exciting to see and hear researchers and doctors from the US and Europe working together and discussing their research. They are going to have an international science conference next year for just the scientists/doctors in Germany. This is a first and such a huge step! We are so proud to be a part of Nevus Outreach and so amazed at all that has happened in the past 2 years. It is really something to see the kids at the conference 2 years later growing up and changing so much. I especially enjoy the teenagers, many of whom have many, many spots all over their faces and bodies. Beautiful girls and handsome guys who seem confident and happy and Austin is so privileged to have them as his role models as he grows up "spotted."

Today Austin started preschool. He was so excited, he's been asking for weeks when it will be his turn to go to school. He had no hesitation whatsoever about going into the classroom. On "Meet your Teachers" day he walked up to a group of kids and proudly showed them one of his favorite spots, the one on his left hand. Today as I pulled up to pick him up from school the whole class was walking back from the playground holding hands. I have to admit to a few tears, thinking this is my baby, the same one who was in that hospital bed clinging to life 3 years ago. I dared to hope for this, I admit, but to see it really happening in front of my eyes is the best. I'm so proud of him!

Austin's 2nd birthday!

I can't believe that my baby is turning 2 on August 24! We are so happy and thankful that we have made it this far! Of course we are planning to celebrate in a big way. Remember, we were given a small chance that Austin would live 2 years. We have no idea what the future holds but we are celebrating this moment right now! Last year in addition to having a great time at Austin's birthday party we raised over $2100 for Nevus Outreach to help find a cure for NCM. Nevus Outreach is currently funding a few very interesting research projects which we hope will help lead to a cure. This is the only organization we know of that is trying to find a cure for NCM. We are so grateful to our family and friends who have given to Nevus Outreach and very touched by the fact that others love Austin and want to help us find a cure. If you would like to commemorate Austin's birthday by donating online, please use the tool at the left under the heading "Donate to Nevus Outreach," or go directly to their website at www.nevus.org and click on "donate" at the top right corner. Additionally, donations can be made through our Cause, "Austin's Angels," on Facebook. If you would prefer to send a check the address is: Nevus Outreach, Inc., 600 SE Delaware Avenue, Suite 200, Bartlesville, OK 74003. Either way please clearly indicate that your donation is in honor of Austin King or Austin's Angels and the money will be used only for NCM research projects. Nevus Outreach is a 501 (c) (3) and your contributions are fully tax deductible. We are grateful beyond measure for your generosity!

Austin update

July is a very busy month for Austin.  He has appointments with all of his specialists in addition to his MRI and was evaluated by both physical and speech therapists.  He has been receiving physical therapy for 18 months, weekly for the past year, and this week his therapist discharged him because he no longer needs therapy! He was considered 58% delayed in gross motor skills as of December 2008, and now is only 18% delayed.  In December he wasn't even crawling, and now he is almost running so he has come a long way. The speech evaluation determined that he is only delayed 2 months in language expression (speaking) and is actually testing at 4 months above his age for understanding language.  So he is not going to be receiving any therapy for the time being, unless he has some kind of setback in the future.  He had an MRI of the brain and spine on July 14.  This is a 3 hour long procedure under anesthesia but he came through it with no problems.  On July 15 we saw his neurosurgeon, Dr. Tomita who did not recognize him at first because he looks like such a big kid now, walking all over the halls of the Brain Tumor Center.  He gave us the results of the MRI, no changes were seen in the brain lesions and this is fantastic news (the only better news would be that they are gone all together).  He doesn't have to have another MRI for 9 months.  Today he saw the eye doctor who also has no concerns about his eyes.  Next week we will see his dermatologist and the following week his new neurologist.  Austin is having a great summer playing with his big brothers and spending a lot of time in the sandbox.  He is the friendliest little boy I've ever seen and so darn cute! We are so excited about his 2nd birthday coming up next month and can't wait to host another celebration of his life.  We got to spend another year in the company of this amazing little boy, watching him grow and getting the chance to hold him and love him whenever we want. Knowing other families would give anything to have their children in their arms again makes me realize that every day should be celebrated and we are so thankful for Austin!

Other families who need your prayers

Unfortunately there are other families who are also battling NCM. Here is one who really needs prayers right now: www.caringbridge.org/visit/rileymitchell. Riley is an 8 year old who is currently fighting progressing NCM. I have recently been in contact with 2 other families who have recently lost children to NCM, the families of Cooper and Gabriella. It is heartbreaking that our children are suffering from and dying of NCM and the families are being told there is nothing anyone can do. Why not? I am dedicated to finding a cure for this condition and bringing all of the families touched by NCM who wish to participate together to share information in the hopes of finding a cure. If you are reading this and you are interested in being a part of this effort leave a comment and let me know how to contact you.

Beautiful article about Austin

My mom wrote this article for US Catholic. It's about the day we found out Austin had hydrocephalus and decided to baptize him right there in the hospital room, and the tough weeks that followed. Hope you enjoy it. (click on the title of this post or http://www.uscatholic.org/life/2009/04/what-do-you-ask-child)

Hope and heartbreak

It's already the end of April! The good weather is here and in Illinois that means lifting the depressing veil that has been hanging over us for months. Austin has been fighting a cold all winter and had 5 ear infections. He had tubes placed in his ears on April 3. His ears have been fine since but the cold remains. We took him to the allergist and she recommended a battery of tests to find out if he is allergic to something that is causing the symptoms. We are awaiting the results. Otherwise Austin has been doing great with no serious concerns. We even heard some promising news about a possible potential weapon in the fight against NCM. It happens that vitiligo, a skin disorder that takes away pigment in the skin, is actually more common among people with nevi (like Austin's birthmarks) than in the general population. It seems to be an immune response in the body *against* the nevi- a "halo" forms around the nevi and they slowly begin to disappear. A child with nevi and vitiligo who also has NCM recently had an MRI of her brain done, and the NCM seems to be disappearing. This could mean that if- somehow- vitiligo could be induced in people with NCM, maybe, possibly it could lead to a cure. Sounds exciting. There are actually some drugs with the documented side effect of vitiligo. Could there be a way to induce vitiligo without causing other damage? Maybe....

Unfortunately as this exciting news comes, we also receive sad news. A baby the same age as Austin died last month of NCM related complications. A boy of 9 years who developed hydrocephalus as a result of his NCM within the last year died of leptomeningeal melanoma. An 8 year old boy named Riley, a first grader like Aidan, just found out that he may have leptomeningeal melanoma as well. You may remember this is what they call it when the pigment cells in the brain turn into cancer. The reason you may remember it is that the doctors thought this is what Austin had all those months ago. At this time there is no reliable treatment (although there is an experimental one) and certainly no cure for this type of cancer. It is extremely rare and the survival rate is extremely poor. It seems to be the main reason that people with NCM who develop hydrocephalus (like Austin did) are told the chance of surviving 2 years is about 30%. We are closing in on the 2 year mark since Austin's diagnosis and I will admit that I am terrified. All of this bad news is finally beginning to sink in (and imagine what it is like for those families). For all this time we have done a pretty good job of staying in the present and are praying for the strength to continue on that path.

All of this news has made me consider what to do next. I feel an urgent need to do something more and we are considering some major fundraising ventures for the short and long term future. We greatly appreciate any input and ideas, and of course, your support and prayers mean everything to us. Of course the main thing we plan to do is enjoy Austin, Liam and Aidan and appreciate each day as it comes!