Update 12/14/03

 

We are getting closer to the finish line.  On Thursday, Stacey and I (as well as Staceys sister and her husband) rented a mini-van and drove down to Baltimore to Johns Hopkins Hospital.  We had appointments for Friday to meet the surgeon and the gastroenterologist, as well as to get Addison entered into their computer system.

 

The doctor who will perform the operation will be Dr. Columboni.  He has done many of these operations, including several on children even smaller than Addison.  Each one is, of course, different, and the outcome depends on the child as well as the doctors skill. 

 

Here is where we stand, according to Dr. Columboni:  Addison is showing remarkable progress with respect to the chemotherapy.  He believes that if the next set of test results are as good as the previous ones, then we should continue with a fifth round of chemo.  Basicallywhy stop something that is working so well?  All of her tests have shown that the cancer is shrinking in both size and activity, so it is reacting in the best-case scenario.  However, the doctor believes that there will eventually be a point where the chemo will no longer show improvement, and it is at that point that we should proceed forward with the surgery. 

 

What type of surgery?  Well, the bottom line is that we dont know yet.  There are three choices resection (cutting out the cancer) transplant, and some type of hybrid procedure.  As Ive said in previous updates, the cancer is shrinking back directly to the main veins in the liver.  This makes it difficult to do a resection as there must be a clearance around the removed cancer to insure there arent any cells left behind.  They will not know the answer to this question until they actually open her up and dig around, and do a pathology test to see if it is dead or active tissue. 

 

The full liver transplant is still an option, although the last resort.  He believes that the introduction of a new liver creates all new problems, and that we shouldnt do that unless we have to.  As an example, one of the children that had a liver transplant 7 years ago now needs another transplant due to complications. 

 

The hybrid procedure is based on new technology and new procedures that have been developed over the last few years.  There are several kinds and this doctor has done each of them.  One of these procedures is a transplant involving her own liver.  If they go in, and have a difficult time cutting out the cancer, they can remove her entire liver, operate on it separately, and then put it back into her (thereby avoiding all the rejection complications associated with a donor liver).  Think of this as removing the engine from a car so you can reach everything easier, fixing it, and then putting it back in. 

 

Another kind of hybrid is to cut out the cancerous vein section and then reattach the ends.  Think of this as a garden hose that has a leak in the middle of it.  You cut off a few inches on either side of the hole, and then reattach the two ends.  There are more options than these, but the basic idea is to avoid the full liver transplant from another person as much as possible. 

When will the surgery take place?  Addison be entered on the national donor list next week on a priority one status (highest).  The operation will occur when a suitable liver is found regardless of where she is in her chemotherapy treatment.  As soon as she goes on the list we will basically be on call, day and night, until a donor is found.  As you can imagine, a liver is only found when a death occurs somewhere else in the country, and that liver is a match for Addison. 

 

To you dear people who have graciously offered your livers to Addison, we cant thank you enough.  Yours is a wonderful offer and sacrifice.  However, according to the doctor, the person donating must be less than 100 pounds and this excludes just about all adults.  The piece of liver needed for Addison is so small that adult blood vessels would be too big for her and also too big for her heart to supply the required blood to keep the liver functioning.  Therefore, we must wait for someones family to suffer a tragic loss of their child in order for Addison to get the liver of a proportionate size.  If it is a teenager that is the donor, then just a part of the liver will fit.  If it is an infant, then the whole liver can be taken. 

 

We still expect the operation to take place in January, but that is up in the air.  The difficulty of this operation is demonstrated by the doctor telling us that there must be other surgeons around to take over for him in case the operation takes too long.  Also, this is a teaching hospital, and other doctors in training will be assisting but not doing the actual operation.  The least-experienced learning doctor has 10 years surgical experience, so these arent exactly new medical students. 

 

The Newport Polar Bear Club (these are the people who jump into the ocean on January 1st every year) is actually a charity group that raises money for different causes each year.  They called our social worker, Fred Barbosa, and asked if he had any recommendations for people they could sponsor this year.  We gave our approval and he recommended Addison a very nice thing indeed.  The only thing they asked for is that a family member be present on the beach on January 1st.  Although I am not required to go into the water, I have decided that if they are going to go the extra distance for us, then I will do the same for them.  So, I invite, (or is it challenge?) anyone here in the area to join me in freezing my ass off on January 1st to raise money for Addison, and to become an official member of the Polar Bear Club. 

 

Also, one of the eldercare centers that Stacey works for is going to have a fundraiser for Addison on January 17th in Fall River, Massachusetts.  And, I believe, Debbie (Staceys step-mother) is going to have one in Newport, too.  All very nice things, and we are very thankful.  We will try to be at each one of these events unless we are called down to Baltimore. 

 

Overall, Addison is doing well.  She is in good spirits and continues to do very well developmentally.  She is a joy to be around and still almost never cries.  She weighs 11 pounds 4- ounces although the chemo is taking a toll on her.  She does seem quite run-down at times, and the side effects seem to be hitting her harder with each treatment. 

 

Stacey is just wonderful at keeping up with all of Addisons care.  Her medical knowledge has really helped the entire process, especially with explaining things to me in a dumbed down way.  She is never too tired to get up with her, and play with her, even in the middle of the night.  Her stamina and dedication are incredible.

 

Taylor is doing well in school, and is handling things amazingly well.  He will be leaving on the 20th to go to his mothers for the holidays, and he will return on January 2nd.  Addison loves her big brother and gives him the biggest smile every time she sees him.

 

My parents keep up with the exhausting task of alternately flying back and forth to California, making sure the house is together, taking care of Taylor, and doing simple things like minding Addison while Stacey gets dressed in the morning.  I even get to brag to my brother Rob that Mom made my lunch for me and not for you, nah nah. 

 

Im doing fairly well as work is picking up.  Some of you have managed to send me business, which is really helpful.  Im gone to work about 12-13 hours each day Monday through Thursday.  Friday is my day off.

 

I seem to have a fairly good grasp of everything going on with Addisons care.  She amazes me each day as I watch her grow and become more aware of her surroundings.  It kills me when she has to go through the pain involved with chemo.  The looming days ahead that will determine her fate are almost too much to think about, as there are a million things that can go wrong with such a difficult and intricate procedure.  We have to hand over our child to someone else, and hope that they are as good as they say they are.  Without a doubt, when we kiss her good-bye before they wheel her away, it will be the lowest and scariest point in our lives.  Im so thankful that Stacey and I will be together so we can support each other. 

 

Unless there is a major change, this will be the last update until after the operation.  I hope all of you will have a great Christmas and New Years celebration.  We wish you all the very best and we thank each and every one of you who has written, called, emailed or just talked to us.  It means so much to us.  We hope to thank you all in person someday.

 

Much love,

 

Mike, Stacey, Taylor and Addison