Second Sclerotherapy Treatment

Let's start off by saying, "I'm sorry."  I know I promised to post an update right after Caitlyn's procedure I have just been so focused on her and getting her well, and starting my first semester of nursing school has been quite overwhelming, to say the least.  A lot has happened since my last update so let's get down to business!

I was so excited the first part of January I couldn't even stand it.  I was literally counting down the days until we, once again, made our trip to CHW - Milwaukee.  Caitlyn was going to be having her second treatment of Sclerotherapy and since she responded so well the first time I was anxious to see what sort of magic Dr. Johnson would be able to whip up this time.  FINALLY, January 13th came and we started our day at 3am.  We were up, packed, out the door and on the road by 4am.  Caitlyn slept the entire drive down, so I'm actually thinking we will start our days early like that from now on.  My mother-in-law, Lousie, came along with me and Caitlyn for help and support.  I don't know where I would be without all of her help this past year...she is my Saint.

Grandma Louise playing with Caitlyn before the procedure

We were set up in a small, but comfortable, post-op room.  Caitlyn had labs drawn and we met with Dr. Johnson, here, before the procedure.  At around 11am-ish, Caitlyn was given Versed, to make her calm and relaxed, and we were then taken down to the radiology procedure room.  While I spoke with the anesthesiologist and Dr. Johnson, Caitlyn was feeling pretty drunk and having a great time playing with Dr. Duffy.  We discussed, again, which medications would be used and where on her body he would focus his attention.  Doxycycline was used, as in the first sclerotherapy procedure, on her right chest wall and left flank.  Dr. Johnson focused Bleomycin down the side of her left leg.  Leaving her in the care of the nurses and anesthesiologist wasn't as traumatic for me as it had been the February before, but it was still hard handing her over and before forced to leave her side.  I knew she was is the best of hands; so I tried to focus myself on thinking of what her life could be like if these treatments worked.

keeping occupied in the pre-op room

Louise and I waited in a very nice and family oriented lounge.  There were many families already there, but the room was extremely spacious and we had no problems finding seats and getting comfortable.  Of course, the waiting seems to take forever, but it always seems to take longer when I want to be by her side instead of sitting helplessly in a lounge.  One of the nurses called me every hour, almost to the minute, to give me updates of how far Dr. Johnson had gone and how much farther he needed to go.  I was so incredibly grateful to be receiving these phone calls, it just made me feel better having the confirmation that everything was going as planned.

The procedure ended at around 2pm.  Before going to the recovery room to see my little peanut, Dr. Johnson came to tell how the treatment went.  He said he was really happy how everything went and there were no upsets or complications.  The only, slight, concern was a blister that had formed in her left inguinal region, (her groin).  Due to the medicine channeling from cyst to cyst, after injection, one of those channeling cysts was quite superficial, which then caused the blister to form.  Other than that, Caitlyn handled the procedure very well.

I was able to head down to Recovery after our discussion.  There I found Caitlyn laying in a crib with a few monitors still connected to her body.  She was sleeping pretty soundly with her favorite blanket and puppy by her side.  This was the first time I entered the recovery room and didn't immediately know where she was due to her distinct cries.  I was actually very happy to find her still soundly sleeping.

Keeping close to Mama after the procedure

It was decided we would stay the night in the hospital for observation. Since she was still on chemo we didn't want to risk going home and then have something serious happen.  Caitlyn slept for a long time on my chest.  If I even tried to put her back in her crib she would cry, so we sat and rocked for almost 2 hours.  She was finally wide awake at around 5pm and rather hungry.  She drank milk for the rest of the evening, refusing to eat table food.  As long as she was putting something in her belly, I wasn't going to force the issue.

Dr. Johnson came to our room to make sure we were settled and to see that Caitlyn was doing well.  We talked, quite extensively, about Caitlyn's future and different surgeries and treatments we may need to try later on.  For right now, we are going to continue to focus on the chemo and sclerotherapy.  He also said, that even though her leg has gotten bigger, the chemo is definitely work on her leg too!  In order to inject the Bleomycin into her leg he had to use a little bit of force just to get the needle into the tissue, compared to last February where the needle slid in and out of her body with no resistance.  This means the chemo is making the cysts in her leg scar over and become dead scar tissue, this is considered a form of fibrosis - which is exactly what we want to have happen.  By this happening, it means if Caitlyn needs debulking surgery, in the future, the surgery will be a lot easier to perform.  Dr. Johnson also said, if Caitlyn hadn't been put on the chemo her leg would, no doubt, be at least 4-5 times the size it is right now!  All of this information just confirms that I made the right decision for her by agreeing to start her on the Rapamycin.  I questioned for a long time whether I really made the right decision; the MRI results from December and the information Dr. Johnson shared with me only confirms my choice of treatment for Caitlyn.

Caitlyn was back to herself that evening.  Playing, standing, crawling, and being a little pistol!  She thought it was just hilarious, at 11pm that night, Mama wanted to go to bed and Caitlyn kept wanting to stand up and dance!  I kept telling her, "This isn't funny Caitlyn."  "Caitlyn, it's time for bed." The more I said this the more she laughed and bounced up and down.  How could I stay frustrated, after the day she had just went through?  She eventually laid down and went to sleep on her own.  I slept, for part of the night, in the most uncomfortable chair, right beside her crib.

The following morning Caitlyn was eating breakfast and teaching the med students, that came to visit her, about her rare syndrome.  Dr. Kelly, Caitlyn's oncologist, also came for a visit that morning.  He was very excited to see how well Caitlyn was doing and how well her procedure went, the previous day.  I told him about the conversation I had with Dr. Johnson the night before, and again he was very glad to hear the chemo was working on her leg not just her internal malformation in her abdominal cavity.  Dr. Kelly said he would like to keep Caitlyn on the Rapamycin for at least another 6 months, which I completely agreed to, no questions asked.  We will be visiting Dr. Kelly, (and Dr. Thometz, Caitlyn's orthopedist), on February 4th.  Until then we are to keep doing what we are already doing: keep her on the chemo and just keep watching for skin breakdown or any kind of infection...simple enough.

Before we were allowed to leave, Dr. Johnson came to visit one last time.  We agreed for Caitlyn to come back in about 10 weeks for a clinic visit on a Monday and then Sclerotherapy procedure on a Tuesday.  The dates have been set for March 28th, clinic, and March 29th, treatment.  We got the okay to leave, received our discharge papers, and we were headed home!

This whole experience has been great!  I couldn't have asked for anything better.  I was extremely happy with the wonderful care Caitlyn received and how understanding each doctor and nurse was that came to see her.  They are not like doctors and nurses where I am from; at CHW they don't stare or call other doctors/nurses to come into the room just to take a quick look at Caitlyn and then go out and talk about her to everybody else, and then more people come in and gawk at my baby.  No, they are all so much more compassionate than that. CHW is where Caitlyn belongs and I feel so blessed, everyday, that we found our way here right from the beginning!

Another BIG update, Caitlyn is WALKING!!!  On January 17th, Caitlyn pulled up to a little riding toy we have for her and started pushing it as she moved her feet behind it.  Since she was hunched over I thought maybe it would be easier if she was standing erect.  So I placed her in from of her toy stroller, made to help little girls learn to walk, and she just started walking!  Now she is pulling up behind, and on the side of, her stroller and walks all over the living room!  I'm just glad we have a big living room for her to roam around in!

Caitlyn on the move for the first time!!!