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If you are a returning visitor, you may notice I have redesigned Katlyn's Blog. Hope you enjoy!!!!





So here we go again. It seems like we only just got back from our trip to Halifax...well...because we did just get back from our trip to Halifax. We thought our next trip to Maryland would be at the end of August, but we were surprised to learn they wanted us there quicker. The want to do a CT scan of chest/abdomen/pelvis to make sure the DFSP has not metastasized. Basically what that means is we want to make sure Katlyn is tumor free inside.
Although, we hate the travel overall and hospital stays are a drag, I think we are looking a bit foward to this trip to NIH. The questions remains in our minds and we need to know. The longer we wait, the longer it is going to drive us nuts. Besides, we need to get moving fairly quickly to come up with the safest and most effective treatment plan for Katlyn.
Wow. Writing all that really seems unreal. News like this alone would make a parent crazy. I know a lot of people have been praying for our sweet little angel, and I believe the power of prayer is one of our helping hands. Please continue to pray for Katlyn. She will not only get stronger with her immune system, but she will fight these tumors as well.
Our baby girl is going to be okay.

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.

Once again, I am so sorry it has taken me so long to update Katlyn's progress. I have been very busy with Katlyn outside because the weather has been so absolutley beautiful. We are loving every minute of it. We still have not heard anything back about Katlyn's skin. I do know they had a few places they needed to send the samples, so that would take time. She has an appointment at the IWK on the 26th, so hopefully we'll know something by then.
All of her biopsy sites have healed very well and no infection has occured. The last time I wrote I talked about the unfortunate event of a medicine making Katlyn's numbers drop. Well, we believe that she is past that now. Her latest neautrophils reading was 1400 and her lymphocytes finally broke 300. We are so excited about this new number and hope to see it even higher at Katlyn's next appointment. This trip we will be spending about a week in Moncton with my mother and we are so excited. Sadly, Canada Day marks the anniversary of when my brother passed away, but I believe we all need to be together to make this year as easy as possible...especially for my mother.
Lastly I would like to mention that fairly recently we put our names in for a new home with Habitat for Humanity and last night we found out they had selected us. So pretty soon the new construction on our new home will start. It seems totally unbelievable. I really didn't think they were coming to tell us that last night. I had no idea. What an amazing surprise. So someday soon, Katlyn will be living in the cleanest safest possible home for her. I am just thrilled. Thank you so much Habitat for Humanity for all the work that you do, and for choosing to help us.

HAPPY TRANSPLANT DAY!!!!!!!!!!!!!!

It's been awhile since I have updated Katlyn's blog, but there has been reason. Last week we had a visit at NIH and we were very happy to see that Katlyn's neautrophils were climbing and staying within normal range. She reached an ultimate high of 3600. We were very happy about this. Katlyn received her IVIG last Tuesday and everything went well with that. On Wednesday Katlyn was brought into the OR where she was scheduled to undergo four biopsies on those spots I have mentioned. Everything with the surgery went very well. A couple of hours after the surgery we were notified that Katlyn's neautrophils would probably drop because she was given a type of medication that Katlyn has been shown to be sensitive to in the past. It is standard practice for a patient to be given something during surgery to reduce the chances of infection. Katlyn apparently has been given this medication in the past and it has caused her neautrophils to drop possibly. You see, Katlyn was having a problem with her neautrophils anyway, so they didn't know if it was an effect of the medication.
So we checked Katlyn on Thursdasy morning and she had indeed dropped down to 600. By that evening she had gone up to 800 and so we came home on Friday morning. You see, 500 is the safe mark and they would have kept Katyln is she dropped below that. So we checked her again on Saturday and she climbed back up to 1400. The newest count was yesterday and she had dropped. We thought the effects of the medication were over, but a count of 470 says otherwise. So now we have to keep Katlyn even safer. We can't go outside if it's windly, or around freshly mowed grass. We have to watch her very closely and take extra care and caution right now. I will be taking her again for bloodwork on Monday and hopefully things are looking better.
On the plus side, Katlyn is feeling great. A couple of her steri-strips had fallen off one of her spots, but while I was at the hospital yesterday they fixed it. The nurse also took a look at all of the other spots and said they looked good.
Now here's the very exciting part. Katlyn toxic matobolite level was down to 0.8%. That is what kills off her cells and why she has no immune system. Because Katlyn has a defective ADA gene, her body doesn't usually filter those toxins. Obviously, Katlyn is having ADA activity because thos toxins are being moved out. This is great. This shows her gene therapy is working and it's only a matter of time and her cells will come up stay up. I beleive that someday soon, Katlyn will be healthy.
Katlyn is happy and well. The 26th marked one year since her transplant, and I just can't belive it's been a year. In some senses it's been a long time, in some other ways it passed very quickly.

Happy Mother's Day

Katlyn is doing well. I took her for just routine blood work on Friday and the doctor called me that afternoon to ask how Katlyn was doing. He probed me with questions as to how she was feelings. Initially, I was a bit worried about the nature of his questions, until I realized he was asking because Katlyn counts were very good and he just wanted to be sure it wasn't because she was sick. He told me her neutrophil count was incredible, at 2500. This is incredible. For those of you who have read Katlyn's blog all along, you know that Katlyn has always had problems with this number. She had to be at 1200 in order to participate in gene therapy, and it took us 8 months of trying different things to get her to that point. A count of 2500 is amazing because she has never ever been that high and that count is very very normal.
Secondly he told me that Katlyn lymphocytes count was about 170. She has been running around 100, so this is also progress. Like I have mentioned, we still have a long way to go. A normal lymphocyte count for Katlyn would be around 4000, but thinking back to when Katlyn was first diagnosed at 6 months old...she had no lymphocytes. All of this news is very encouraging for us. On May 26 Katlyn will be 1 year post gene therapy, and it's nice to see that she is still going up. She seems to take jumps every onece in ahwile and when she takes these jumps, she goes higher and higher. The last jump I believe brought her up to about 1200. Whenever we get news like this it helps reaasurre us that Katlyn's gene therapy is working.
So we will be heading to Maryland a bit earlier this month. We will be travelling down on Monday the 19th and staying for about a week. This time, Katlyn will be spending her time in the hospital as she will be having surgery. They are going to biopsy three of her tumours, because they feel they need to find out more information about these tumours. As I mentioned before, the type of tumour that they found is a very rare type of tumour and a patient has never had many like Katlyn. We have counted 12 marks in all so far. So they will be checking one of her chest which feels as though there is a node in it. There is also one on the back of her leg that seems to be changing in appearance. And the third one will be one that we have noticed very recently. They want to take a look at all of these and compare them. Hopefully we'll find that none of them are tumours at all. Time will tell what all these marks on our daughter are and I remain sure of myself that my little angel is going to do great. Katyln is a fighter and she is going to get through this as well.
Mother's Day was so great. Johnathan and I took Katlyn outside for a nice little picnic in the park and then we went for a little drive. Once we came home we played outside for a while, rolling down the hills and playing hide-and-seek around the trees. It was very fun. Recently, Katlyn and Haley helped me to plant a couple of flower pots and I noticed they sprouted yesterday. It was pretty neat because it ended up kind of being a Mother's Day gift will out it meaning to be. I also got two very nice summer outfits which I absolutely love. And the greatest Mother's Day gift of all was looking at Katlyn and seeing how happy she is and how far she has come. I am so proud of her. I am so happy and proud to be Katlyn's mother.
In closing of this post I would like to mention my mother and John's mother. They has been so great through all of this. They have helped us in every possible way they can. We are so lucky to have them. My mother is very far away from us, but she is always helping us. Wheather it's an ear to cry in or going on a long trip to Halifax with me, she is always there. Thanks MOM. Johnathan's mother is also very supportive. Thanks for everything you do. Wheather it be picking us up water or something else we need when your out and about or listening to us when we just need to vent. You are incredible women and we are so very lucky to have you as our mothers. Thanks for everything you do!!!!!!!!