Is the Chemo Working???

I know this has been a question on everybody's mind, especially those living with KTS, "Is the Chemo working?"  Caitlyn had an MRI done on the 13th of this month to figure out just that and at our VAC visit the following day we found out our answer.  I am extremely happy to report the chemo is working!!!  As most of you know, Caitlyn has involvement into her abdominal cavity, up into her chest, next to her aorta, and even wrapping around her spine, almost all of this involvement has been reduced by 90%!  Most of what we are seeing on the MRI is just left over scar tissue.  Her left leg, however, has gotten progressively bigger since her last MRI.  Her team of doctors are somewhat dumbfounded by Caitlyn's entire case of KTS.  First, why does her malformation start half way up her left flank and immediately stop at her knee.  Next, it's very curious as to why her port-wine stain in only on her left flank, in stead of spreading down her leg or across parts of her body with lymphatic involvement like every other KTS patient.  Also, KTS patients have all three: lymphatic malformations, capillary malformations, and venous malformations...Caitlyn however does not have any venous malformations to speak of.  Last, why is the chemo only working on her internal involvement and not any where on her leg?  I believe that by proving this chemo medication works is really going to change the way doctors treat patients with KTS and other lymphatic malformations.  Instead of havingna limb amputated or having risky, invasive surgery this could be used first.  It is just wonderful to know there may be one more option out there for people suffering with this condition and the Lord knows these patients need all the options they can get.

After finding out about the chemotherapy working, Dr. Kelly, (Caitlyn's oncologist), said he didn't see any reason why we couldn't move forward with the Sclerotherapy while still keeping her on the chemo.  So the next doctor to see was Dr. Johnson, (Cailtyn's IR).  He, however, was not so sure about moving forward while she stayed on the chemo treatment.  When he told me he wanted to wait until after she was off treatment, which would be months, I literally felt like he ripped my heart out of my chest, threw it against the wall, and stomped all over it.  A little dramatic but I was utterly devastated.  I was so excited for him to tell us to come back down right away and we will get this next step going; then maybe she would be able to walk and move and do the things she should be able to do.  It was agreed that Dr. Johnson would speak with Dr. Kelly and discuss Caitlyn's care thoroughly.  Dr. Johnson just wanted to make sure giving her the Bleomycin during the Sclerotherapy procedure while she is still on the Rapamycin wouldn't harm her in anyway or set her back since she has already come so far.  I was still disappointed but satisfied with the decision to discuss her care closely first.  The last thing I want, and any of her doctors want, is to hurt Caitlyn in any way and after thinking about it like that I was happy we didn't have a team of doctors that would just jump into a procedure like this before making sure it was completely safe first. 

Next, it was down to Ortho to check out Caitlyn's hip.  The X-ray showed her hip still sitting stable and in place.  It also showed that her femoral head was already starting to round out!  This means, hopefully, there will be no hip replacement in Caitlyn's future!  Dr. Thometz was very happy to see the progress that Caitlyn has made, especially since he never thought the closed reduction would work, and if it did he didn't think it would stay in place with the type of brace we had to put her in.  Caitlyn is proving people wrong left and right!  She is now able to be out of the brace for 8-10 hours a day.  The only frustrating thing about Caitlyn being out of her brace is she refuses to sleep without it and sitting her in a carseat seems to be painful for her. She is able to ride in the car for 10-15 minutes and then she starts crying and absolutely nothing will help her.  However, if I put her in her brace and sit her in the Britex Hippo carseat we can drive for hours and she never makes a sound.  I'm a little worried as to what we are going to do when she finally outgrows the brace and we have no choice but to put her to bed and in the carseat without it.

I received an email from Dr. Johnson, right before Christmas, saying him and Dr. Kelly have both agreed to move forth with the Sclerotherapy!  After discussing her care in depth they have found no evidence that should keep her from having these procedures while still taking the chemotherapy drug.  Her surgery is scheduled for January 13th.  Needless to say, I am SO ECSTATIC!  Dr. Johnson will use the same medication he used last February to get a couple of the macro-cystic cysts  in her chest wall and abdominal cavity, then he will use the Bleomycin and focus on her leg.  Since he can only use a set amount of the Bleomycin with each treatment, and Caitlyn has so much involvement with her leg and other areas of her body, she will have to have multiple Schlerotherapy procedures in order to get the best outcome possible.

I will be sure to post an update after her surgery and the weeks following so you all can see pictures and follow the changes her body will undergo.  Thank you all again for your support, prayers, and the wonderful emails I have received.  It's nice to know there are people all over the world who are pulling for my daughter and thinking about her and our family even though we have never met.  I love you all and Happy Holidays to everyone!