Little Dooneret

So I have a very good friend in LA, Jason Muldoon, who had a baby girl born back on June 9th, Samantha Lynn.  Samantha was born with a very rare disease called Auto Recessive Polycystic Kidney Disease.  So rare in fact, Southern California has had only three cases this year.  The disease causes calcified cysts to form on the filtration duct of the kidney, thus not allowing normal functioning of the kidney.

Samantha has been through quite a bit in her short life.  When she was born the medical team was providing oxygen and burst one of her lungs.  She then had one kidney removed to allow room for the stomach to grow, unfortunately the second kidney took up this space and when it was removed it had grown to one pound (1/9 of her total weight).  Samantha had since progressed quite rapidly through her recovery until about two weeks ago when seizures started to occur, but after further inquiry the tests proved that they were actually little strokes.  She should fully recover, but the concern is avoiding the next one, which should be possible by closely monitoring the blood pressure.

The good news of this story is that Samantha was supposed to be moved last night out of the NICU and into regular care on “the floor”.  If all goes well, Samantha should be able to go home for the first time in four weeks, but Jason and Trisha still have a long road ahead of them having to watch her closely and take on the activities that the hospital has been doing for the past several months.  She should be eligible for a kidney transplant once she hits 33 lbs. 

I post all of this not to tug at your heart strings for yet another baby, but because Jason has been so generously there for me with his time over my past two weeks and being inspired by so many messages from everyone out there I wanted to ask that you add one more baby to your list of prayers.

If you want updates, and are a facebook member, please add Samantha Lynn Muldoon.  They are posting daily updates and photos.  Thanks in advance for your support.

Arrrr, Go Vols!

Just moved again, but fortunately not to the PICU.  We moved next door into a much larger room.  It feels like the penthouse compared to all of the other rooms we have had the pleasure of occupying.  This one actually has an entire wall of windows, unfortunately they face east, but with all of the rain we are having here that shouldn’t be much of an issue. 

Apparently this room is reserved for those that will be here a long time.  Hopefully long time means only a few more weeks until we can get Cutler home for a few days before starting the next round of chemo.  What’s good about this room becoming available is that it means that a little girl got to go home today!  I look forward to the opportunity to pass the room along to the next survivor after Cutler finishes this battle.

By the way, did you know that September is Child Cancer Awareness month?  Irony really stinks sometimes.  On that note, we have been blessed to have such a tremendous network of support on all avenues and we are still getting offers of “let me know what we can do to help”.  What we have recently discovered, is that for the locals, if you make a blood donation in Cutler’s name, we get a credit with the blood bank.  So, from what we have been told if you go to any Carter location and provide them with Cutler’s name and dob (3/14/09) we will receive a credit which will help go a long way at the pace he is going.  Their web site is http://www.carterbloodcare.org/.  For those that don’t live in the local area, donating in his name won’t help us in the same manner, BUT it will help someone else.  So in recognition of Cutler and the Child Cancer Awareness month I would recommend donating blood if you have the time and ability.

I have been touched by cancer a few times in my life and have lost some loved ones very close to me, but it is only now that I am really seeing what cancer is all about.  I had no idea how much blood and platelets come into play and so be prepared for a soap box occasionally about the importance of supporting via donations of both blood and to cancer charities.  I only wish I had been more proactive before now, but I am quite certain we will be heavily involved going forward.   You don’t have to be a Vols fan to be a Volunteer, but it doesn’t hurt…just ask Mason. (Please refrain from any Gator taunting after tomorrow’s game)

Larry, Moe, and Curly

I don’t know where we would be without the three lovely ladies pictured above.  Yes, they had to ask how to turn on the lights in Cutler’s room because they were afraid to “set off alarms” by using the light switch because it was colored red, but without them during this time we would be lost and we can’t say enough…not to mention Mason and Cutler have a special affinity for them. 

Larry is my mother in law Betty, Moe in the middle is my mother Carol, and Curly on the right is my Aunt Pat.  Thank you so much to the three of you for cleaning house, doing the laundry, grocery shopping, making Mason’s lunch, playing with Mason, watching over Cutler and just overall being tremendously loving people.  Melanie and I love you very much and can’t begin to thank you for what you are doing.

So this isn’t going to be the typical blog complete with wit and political insite.  Instead, with the recent events, I have decided this is the easiest way to keep in touch with all and provide updates on Cutler (more to come) and the entire family as we continue to progress with life.  Most importantly, this is easier than putting together and manging a web site.