Monday, July 7, 2008

Our last visit to IWK

Sorry I have been home for a few days and still not given an update on Katlyn's progress, but it has been amazingly beautiful outside and we were having a blast. Today is also a very nice day, almost too hot and I'm just waiting for the shade to settle on some of the dooryard, so Katlyn can safely play without getting overheated.
This visit Katlyn got IVIG as usual and the day went pretty good. Her needle did slip out of her port, and a large quantity of fluid had built up under her skin, but after applying warm compressions...all was well again. The highlight of our trip was getting confirmation that all of the marks on Katlyn are in fact the same type of tumor, Dermatofibrosarcoma protuberans or DFSP. I guess the news did come as a bit of a shock because we did still remain optimistic that they other marks were nothing. I think we all kind of knew though, because of the similarities that there were more than one. So it looks like Katlyn has 12 of these tumors.
Everyone is trying to come up with the right treatment plan for Katlyn, the trouble is, Katlyn is the first patient with multiple DFSP tumors. So far only one tumor seems to have a nodule in it. It seems as though Katlyn will be possibly having Moh's surgery to that one. Moh's surgery involves cutting a border around the tumor, not sewing Katlyn back up until a stain of that skin is done to make sure all the surrounding skin is tumor free. If it wasn't she would be brought back and they would cut more, until the felt confident they got it all.
Katlyn has an appointment at the NIH at the end of August and we will not be doing anything until she has a CT scan. The doctors have no reason to believe that these tumors have metastisized, because the chances are pretty slim. But we all want to be very sure. They want to have the full story before starting any kind of treatment. In the meantime, we are trying a ointment called Aldara. Aldara is actually most commonly used for genital warts, but is more recently being tried for malinoma cancers, leaukimia and other types of cancer. I don't think it's been used for Katlyn's type of tumor. This cream is applied to the tumor three times a week and what it does is put up flags for the immune system to go directly where the cream is and fight. We are hoping this cream will do the job. If it does it can save Katlyn surgery, chemotherapy, radiation and any other treatment they have in mind. Because Katlyn is immune compromised, using these drugs or surgery could compromise her even more.
On the upside, we have not noticed anymore tumors. Hopefully they are done appearing. The doctors don't seem worried that Katyln isn't going to do well. We remain very optimistic that everything is going to be fine. Katlyn is a fighter. She has been fighting since the day she was born and she will continue to fight and overcome this as well. I hate to see her have to go through this on top of everthing she has already been through, it breaks my heart, but she is going to be okay.
We should start building the new house next month. We are so very excited!!!! This is going to be so great for us. This apartment is just too small for us. It will be nice to have a lot more space. It has been confirmned that the house will be in Centreville, we're just a little confused about where it will be.
Katlyn has been loving the beautiful weather. She has been spending a lot of time swimming. When we were in Moncton it was really easy being at the pool to get her in the water. Now I find it a little more difficult. The local pool is just way too busy. We have been lucky that Aunt Phyllis and Uncle Ted have been so kind enough to have us over the past couple of days. Their pool is beautiful and we are extremly gracious to be welcomed into their home. As Katlyn's mother, I strive to make Katlyn's life as normal as possible and swimming is just another one of those things I love seeing her enjoy.
Yesterday was a beautiful day. When we woke up, I packed a picnic for us and then we picked Haley up and when to Sam's park. The girls fed the ducks and fish and had a great day of play in the park. We even went on a nice nature walk, being sure to stop and point out all the beautiful things on the way. The girls loved it. Then we enjoyed a nice BBQ with Sandy, Duncan and Katlyn's cousin Jonathan. And then we ventured over to Ted and Phyllis' pool and had a blast. What a great summer day.