Meet the McNeil Family

Meet the McNeil Family

Tuesday, May 27, 2008

Confident

A few days out from our decision and we still feel extremely confident. This does not mean that I won't spend time wondering "what if"...I think that I will always wonder how things could be different had we chosen to go forward with the transplant.
There are many more big decisions ahead of us, waiting for an answer. We need to decide where we want to settle. We want to move some place for the long term - a place to really call home. In 10 years of marriage we have never done that!!
I am anxious to get back to the US. We have a ton of doctor appointments and we need to prepare a "safe room" for Waverly. (A "safe room" is just a bedroom with no furniture, just soft toys and a bed. We will have to install a dutch door and a video monitoring system. This allows us to put her some place safe to play and sleep. She is getting strong and will start hurting herself if we don't create a safe place for her.)
Unfortunately, Wavey seems to be changing daily. I am not sure if it is our interpretation of things now that we have a diagnosis or if she really is beginning the rapid regression. It is so incredibly difficult to watch. In a way, I feel like I am losing my beautiful little girl to this horrible disease. But then I get a smile or a look, and I know that she is still there.
I wonder if it scares her or if it hurts. I certainly pray that is not so.

Saturday, May 24, 2008

Drum Roll, Please

I know that many of you are wondering what our next step is going to be. We have made a final decision to NOT transplant Oliver.
Unfortunately, the benefits from the umbilical cord blood transplant are not great. There will be no cognitive improvement, because the cells cannot pass through the blood-brain barrier. The doctors have seen behavioral improvements and the physical deterioration is slowed in patients who have been transplanted. When we add all of the benefits up against the risks (he has an 85% chance of surviving the transplant, but still at risk for graft-versus-host disease or other very serious infections) & the impact on our family, especially Waverly, we just don't think the transplant is the way to go.
As a mom, my instincts are to do whatever I can to help my dying baby. Saying "no" to doctors who think they can do something to help Oliver, is the absolute most difficult decision that I have ever had to make.
We did not want to sequester our family for an entire year; away from family and friends, schools and church, playgroups and parks. We are choosing to relish in Waverly & Oliver - to never pass a carousel without taking a ride, always taking the time to pick up sticks, carrying a balloon all over town, and making as many trips to Disney World to see Pooh & his friends.
We will now embark on a long journey of decisions. We are trying to determine if we can fulfill our commitment to another year in London. We feel like there are SO many doctors and specialists we need to see, that a move back to the US will most likely be in our best interests. We are also trying to figure out where that move will take us. There is so much to consider. Thanks to all of your for your support. Thanks to Duke for being such a pioneer in this field and wanting to help kids with Sanfilippo so desperately.

Saturday, May 17, 2008

Visitors

One of Matt's old roommates from college stayed with us the past 2 days. It was really good to see him after all of these years. It was especially good for Matt to be with an old friend. It was great to watch them laugh together. Matt's parent's are arriving tomorrow morning for a 14 day stay. They are excited to see Waverly & Oliver and our life in London. We are planning on having a conference call in a few days with the doctors at Duke. We are hoping they can answer any lingering questions we have and that a decision will be made shortly after we speak with them. The kids are both doing well, although I think the sudden cold/wet snap has given them a bit of a cold.

Friday, May 16, 2008

Thank You!!

Thanks to all of you who wrote saying you joined the MPS Society and/or made a donation. You made a very sad girl quite happy. We have no decision yet on Oliver. We are highly stressed and feel such confusion. Your continued prayers are vital in helping us make this huge choice.

Thursday, May 15, 2008

Happy MPS Awareness Day!!!

Happy MPS Awareness Day, everyone!!! Please visit www.mpssociety.org to figure out how you can help fund research so we can find a cure to this horrible disease.

Wednesday, May 14, 2008

Photos From Our Weekend




MPS Awareness Day - Tomorrow

Tomorrow, May 15th, is MPS Awareness Day. Please join us in celebrating other kids who have MPS and make others aware of this terrible disease. We are members of the National MPS Society. If you are interested, I encourage you to join and donate to help fund research so we can find a cure. Their website is www.mpssociety.org They are rated a 4 star charity and they have served us well during our journey thus far. We hope to create our own charity soon, so we can hold fundraisers for research and to help support other families. Maybe next year we will be hosting an event for all of you to attend!!

Sunday, May 11, 2008

Happy Mother's Day!!!

Happy Mother's Day to all of the moms out there. We hope you have a wonderful day.

Tuesday, May 6, 2008

A Desicion

With a huge list of decisions before us, we did make one decision. We are NOT going to pursue the transplant for Waverly. Unfortunately, the disease has progressed too much in order for her to benefit. Plus, her risk factors are too high based on her age. We are still thinking about Oliver, who the doctors at Duke feel is an excellent candidate. Our time at Duke and UNC was very helpful. The doctors were incredibly helpful, in that they have seen 40+ kids with Sanfilippo. They are more knowledgeable than just about anyone on this disease. We feel fortunate to have been able to spend a week with them. I will write more details later. I am still exhausted from our trip.

Saturday, May 3, 2008

Back To London

We just wanted to let everyone know that we are flying back to London tonight. We still have an abundance of decisions to make and we think we can do that best at our home. We need to take some time to think.

Thursday, May 1, 2008

MPS III A

Tomorrow is going to be a big day for us. Both of the kids have MRIs in the morning and we are meeting with the doctors in the late afternoon to go over all of the results from the week. We did find out that Waverly has MPS III Type A. Our neurologist in PA called us today with those results. The doctors here suspected she has Type A. It is usually regarded at the most severe type. It is most likely that Oliver has the same type.