GCSF

The little man on Grammy Shirley's porch. Katlyn really took a liking to him and his Canada flag.

Katlyn in her new pool at Grammy's house

Katlyn needing to sit by herself on the shuttle at the airport in Portland. It din't last though.

Katlyn realxing after she woke up from anaesthesia.

Well as you know we have to take Katlyn to the hospital for bloodwork and adminmister GCSF every Monday and Thursday. We intended on getting the nurse to help us with the GCSF at the same time we were getting bloodwork done. Things dind't really work out that way though. Yesterday was a holiday and getting the blood work done was hard enough. We had no choice but to bring Katlyn home and give the GCSF ourselves.
I have never given a needle to anyone before. I was way too scared to do it. Johnathan was in charge of the important task. When he was getting all the supplies ready, Katlyn asked me what he was doing and what she was getting. I was honest and then she asked if it was going to hurt. I try to always reamin completely honest about things as I can. That way Katlyn will trust us through it all. I told her it would hurt a little for a sec, but then it would be okay. She asked me what she was going to do. I told her she was going to be strong and brave and then it would all be over. She said she needed a band-aid on it.
It surprised me how Katlyn was with the whole thing. It seemed as though, although it was obvious she wasn't that thrilled to get the needle in the first place, she was more relaxed with Johnathan and I. I think the trust we have worked so hard to maintain with her has paid off. She knows we will tell her the way it is, and we wouldn't hurt her.
What a tough little monkey.
The GCSF did work very well and the doctor said on Thursday we should take Katlyn for blood work and hold off on the GCSF until we get the Go Ahead by the doctors. It may be only necessary once a week instead of two. So it looks like we will be administering her GCSF shots, but cutting them in half will definitely help.

A little Coffee Break

Johnathan received a New Brunswick merit award and we're so proud of him. This is him all dressed up in his fire fighter dressy uniform. What a handsome Daddy.


Being a patient little girl waiting for Doc's

Playing with the exam chair. Making Dad go up and down. It was pretty funny

Katlyn playing in the playroom at the Children's Inn.

I know most of you have noticed I have changed the name of Katlyn's blog. Over the past few weeks we have learned that Katlyn has a type of cancer called Dermatofibrosarcoma protuberans or DFSP. This cancer typically grows very slowly and therefore is thought to have benign like activity. I found out for the first time yesterday that any type of tumor that has the capability of metastasizing, is malignant. I never thought in a million years I would have to hear those words, especially referring to my sweet angel Katlyn.
It's very strange. We have been learning more and more about DFSP. Everything is the same, nothing has changed. But I have just learned my little girl has cancer and it's malignant. I want to scream at the top of my lungs. I'm angry, sad, scared.....well I'm everything. I just want Katlyn to be okay and nothing else matters.
While we were in Maryland a CT scan was performed and no tumors were found on Katlyn's organs. Thank you God. They did however see possibly a new tumor that we thought was a scar. So if the new one turns out to be one, she has 13 known tumors. Otherwise maybe 12, for sure 5 have been biopsied at this time and they are defiantly DFSP.
We were in Maryland all week and during that time were talked a lot about a treatment plan for Katlyn. Usually with DFSP, the ideal treatment would be Moh's surgery, where they cut a 3cm border around tumor and deep. With one tumor, this may be possible. But when you're talking about a two-year-old little girl with 12 or 13 of these...It would be outrageous. Oh and I'm not sure if I've mentioned this before, but Katlyn is the only known patient to ever have multiple DFSP. This type of tumor is very rare, and what makes Katlyn's even rarer...is that she is the only known patient with so many.
I will do my best to find some easy to understand stuff about Katlyn to share on here. Until then the best way to describe things. To understand what happened you have to get to a molecular level. Basically what happens if you can follow me is that well picture chromosome 17 as red and chromosome 22 as green. Let's just say a piece of 17 (red) breaks of and 22 (green) breaks off and then they switch places with each other. This process is called chromosomal translocation. No one knows why this happens, but that is what causes this cancer. Now what holds the newly formed chromosomes together is what you call a protein fusion.
I know I know. Crazy stuff.
Anyway. Since surgery is not a practical solution at this time, we are going to start Katlyn on a drug called Gleevec. Gleevec is a special type of chemotherapy drug that is FDA approved for DFSP as well as a couple of others. What makes Gleevec so special is that unlike most chemo drugs that destroy everything in their path, Gleevec is a special drug in the sense that it is more targeted. It goes straight to the protein of this cancer and blocks it. If it works these tumors should start to change pretty quickly. She may need to have surgery on at least one now, and possibly more later...when surgery looks more appealing.
Gleevec does have all the same side effects as other chemo therapies, but these side effects I guess are mostly on paper. She may experience some nausea, but the side effect that concerns us the most is that this drug can suppress the bone marrow...specifically white blood cells. The white blood cells are what we have a problem with already. Neautrophils and lymphocytes may drop. If Katlyn drops below 1000 neautrophils, we will put this drug on hold. To ensure that Katlyn is at a nice safe level, we will also give Katlyn GCSF twice a week for at least the next month. The shots may slow down later on. GCSF is a bone marrow stimulant, specifically targeting the neautrophils. The doctors felt it was best to stabalize Katlyn's neautrophils first instead of waiting for problems. We have been given some of this medication to administer at home. I think I will do it in front of the nurses at the hispital for awhile. I am confident I can give it, I just want practice too.
Besides that, we'll be checking Katlyn's blood work twice a week and going back to NIH every three months min. As well, she will still meet with her doctors in Canada.
I must say, just like Katlyn's SCID, I am learning that you need to be educated about your child's illness. It seems as though the more you know, the less scared you are.
I am by no means not scared. I just know a lot more about the subject and I'm confident Katlyn, our little angel, is going to be fine. She does have another fight ahead of her, but she is a fighter and she will fight DFSP as well.
Please keep my little girl in your prayers.

Up Up and away

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.