We're BACK!

That's right, Caity is now 2!!!

After taking a year off of blogging and documenting Caitlyn’s journey I think it’s time I return to the keyboard and start tracking her life again.  It’s been a wild ride, so let me start from where we all left off.

Before Debulking #1

Caitlyn went off of the chemo in the middle of last May, 2011.  Towards the end of June we met up with Dr. King and his fantastic team for Caitlyn’s first debulking of her leg.  I don’t think I can perfectly explain the rush of emotions I felt that day.  It was like a whole new life was beginning for Caitlyn.  I was so incredibly worried but I knew Dr. King had the skills to do wonderful things for her and I just put my trust in that, (I suppose it also helped that I knew he was rated one of THE top doctors in the United States).  In just a few hours of taking her back they were ready for me to see her in recovery.  When the nurse pulled back the blanket I was in utter awe.  I just looked up at Dr. King and smiled; there was nothing I could say that would really express my thanks to him and his team.  We spent only a few short days in the hospital and we were then sent home.  Caitlyn came home with a JP drain coming out the top of her leg.  From there on it was a roller coaster ride and I was just trying to hang on without a seat-belt locking me in place. 

After Debulking #1

Some days were good and she would only drain a minimal amount of fluid into her drain but most days it was a never ending extreme amount of fluid coming from within her leg.  Then, one day Caitlyn got fed up with the tubing and decided to rip it out.  From there, her leg began to swell.  We were making the eight hour, round trip to see Dr. King about once a week.  At one of the appointments he decided it would be best to start wrapping her leg with an ACE wrap.  I was not thrilled with the idea but I hesitantly went along.  By the next day all the fluid that was sitting in her leg was now pushed up into her mons.  Her mons was bigger than a softball; it was purple and kind of red, she couldn’t even walk.  She screamed all day.  I noticed she felt warm so I took her temp: 102.  I called Dr. King’s office and I took the wrap off of her leg, I couldn’t sit there and watch her in that kind of pain and do nothing.  Milwaukee called me back and said to bring her down to their ER.  Caitlyn cried most of the way down from all the discomfort in her mons.  I hope I never have to make a drive like that again.

Once there, she was admitted.  For the next five days we alternated the ACE on and off just hoping to get her incision from the debulking to heal.  The incision started to leak but nobody seemed too concerned.  On our fifth day, our insurance said they would not cover the cost to keep Caitlyn in the hospital anymore since all we were really doing was monitoring her.  Of course, they were told the risk of infection if she was sent home without close monitoring of her wound – they would not waiver.  As the next few weeks wore on, I noticed a strong smell coming from the dressing changes covering her incision.  But because she didn’t have a fever and the area around her incision wasn’t too red, again Dr. King wasn’t concerned.  I, however, knew something was wrong. 

After Debulking #2

In the beginning of August, we went back for another debulking surgery.  Once in the OR, Dr. King came upon quite a surprise.  In fact, in his own words, “the biggest shock I’ve ever had in the OR.”  He reopened her original incision, because it still had not yet healed all the way, so he was planning to fix it.  From there a fowl stench and a huge abscess of infection was there within her leg.   The good thing about this is that her body blocked off the infection, keeping it from spreading.  It stayed localized and was therefore easier to remove and treat.  The operation was a success and her leg was once again reduced dramatically in size.  Unfortunately, instead of our five day stay that I was expecting we had to stay for close to three weeks.  A VAC was used to help promote good blood flow to her leg and skin.  This was in order to aid her in healing and keeping her skin alive and well.  Every three to four days she was back in the OR to do a VAC change and to perform a procedure to clean up in side of her leg, this is called irrigation and debridement. 

Almost ready to go home!

It was not an easy three weeks.  In fact, it was quite literally the worst three weeks of my life.  Trying to entertain a toddler, in a hospital, when you are quite unprepared for the stay, is almost impossible.  However, my husband’s aunt and uncle came to visit and we were even able to leave the hospital for a few hours to go out to lunch and do some shopping at the mall.  It was a wonderful and much needed break from the hospital atmosphere.  Their company was such a blessing and much appreciated. 

Finally, on the day that I was supposed to start my fall semester of nursing school Caitlyn had her last surgery and we were discharged just a few hours later.  Her antibiotics were over and her PICC was removed.  We were set to go home!  We didn’t stop one time the entire way and Caitlyn never cried or whined the whole drive.  She was as happy as I was to be gone.  It had gotten so bad at the end of our stay that whenever we came back to our room from a walk she would start screaming and crying because she just didn’t want to be in there anymore – it must have felt like jail to her.  She would look at me and say, "Go home, Mama. Mama, go home!" But now we were gone and just couldn’t wait to get back!

Wearing her tights...kinda hot in the summer but it worked

I started school the next day and we made a few trips to Milwaukee during the semester for check-ups with Dr. King.  In the middle of September, Caitlyn’s JP drain clotted off and I had to cut the stitches from her leg, connected to the drain and then pull the drain out myself.  Usually this sort of thing would not bother me in the slightest, but because it was my own daughter, I literally almost threw up all over her.  I became sick and started to cold sweat - it was not good.  Once the drain was out the hole where the drain was profusely leaked fluid.  This stopped after just a few minutes, I was able to put a dressing over it, and she was fine.  Now that the drain was out Dr. King wanted some kind of compression on her leg, but I refused to use an ACE wrap.  Dr. King’s resident came up with the wonderful idea to use a size smaller tights for Caity to wear.  It really did seem to work, and it definitely did not cause the complications that the ACE wrap did. 

During these months, Caitlyn started at daycare for the first time and Peter and I decided to start trying for a little brother or sister for Caitlyn.  Thanksgiving and Christmas was great!  In the middle of December, we were in a car accident and totaled our vehicle.  Thankfully, nobody was hurt and the other driver’s insurance agency gave us a nice settlement.  On Christmas, we started our first round of fertility treatments because we still were not pregnant.  Then, in January Caitlyn had an MRI of all her malformations as well as an X-ray to determine how extreme her leg length discrepancy really was.  Her LLD is about 2-3cm, which causes her to limp while she walks.  It also showed that her right hip is still not looking very good.  A major reconstructive hip surgery may be needed sometime in the near future (possibly this summer).  We will determine that, as the middle of summer gets closer.  We then met with most of her doctors and decided to start some sclerotherapy again with Dr. Johnson.  

We did sclerotherapy in February.  Caitlyn also had an ultrasound done of her kidneys to check for Wilms tumors (a childhood form of cancer, which is quite possible to develop in patients with vascular malformations such as Caitlyn).  That test came back negative.  In March Caitlyn had an MRI done of her brain to make sure there were no malformations growing there – thankfully, that too, came back negative. 

this is how she sleeps...too cute!

At the beginning of April we regrouped with the entire team to determine where to go from here.  I had struggled for weeks to try and come up with a decision of what to do next for her; especially when it came to putting her through another debulking.  I have felt angry and sad because I know how hard this is on me but to put my own daughter through that is just terrible to think about.  However, I was also excited about the new possibilities and a completely new life it would bring to her if we just went through with it again.  I turned to family and friends for advice.  I received mixed feelings on the matter.  My husband was more than willing to do the surgery again but my mother-in-law was more conservative.  She felt we should give Caitlyn another year and a summer to just be a kid with no worries about surgery and to just stay away from the hospital for a while.  Then, we could regroup again next year.  To say the least I felt quite torn.  The weight in my heart was unbearable.  Of course, I did not want to put her through another three weeks in the hospital along with the pain and discomfort of surgery.  I also felt that I never want her to remember any of this and if I wait too long she will remember, and I so badly do not want those memories within her mind. 

So, after speaking with most of Caitlyn’s doctors I still was unsure.  Dr. Kelly (Caitlyn’s oncologist) was the last to see us.  He made a very good point and that is what I really made my decision off from.  He said, “It’s not a matter of if she will have the surgery it’s all a matter of when, because it does need to be done.”  We went on to discuss the risk and benefits of doing the procedure now or waiting until she is older.  He helped me to see that it really is a good idea to do this now while she is young and while she still won’t remember any of it.  It wouldn’t be wrong to wait, but it is just more right to do this now.  Other than Dr. Johnson, Dr. Kelly really gave me his heart felt opinion on what he would do if Caitlyn were his child.  I felt relieved that somebody finally told me how they felt instead of saying, “It’s all up to you Sondra.  Go ahead and make a life changing decision for your daughter all by yourself, Sondra.  Let’s wait, let’s not wait, you decide.”  Ahh, I finally made up my mind.  We all agreed to start sclerotherapy on her mons, do laser treatment and cortisone injections into the large, keloidal scars of her leg, and then schedule a third debulking along with chemotherapy as soon as my semester of school was over.   Caitlyn will go back on the Sirolimus/Rapamune a few days after her debulking to try and limit the amount of fluid she produces.  Once on the chemo she will be on it for at least a couple of months; I truly hope it works!

In the middle of April, Dr. Johnson did another sclerotherapy and he really focused on her mons because it is still quite swollen from her last debulking.  When Dr. Johnson was finished, Dr. Drolet came in to the surgery suite to do the laser and injections.  We stayed a single night and left for home the next morning.   Before we were discharged, Caitlyn and I got to meet a new addition to Caitlyn’s team: Dr. David Moe.  Since Dr. Johnson has decided to leave Milwaukee Children’s and move to Flordia, Dr. Moe will now take over Caitlyn’s case.  He will be her new interventional radiologist.  He seems very nice but I do not think Caitlyn and I will have quite the relationship with him as we did with Dr. Johnson or Dr. Kelly, or even Dr. King.  He will now be a big part of her health care plan so who knows – hopefully he doesn’t up and move either, then it will be off to Boston for sclerotherapy.

My semester has ended and Peter and I have finished our third round of fertility medications, still no luck in the baby-makin’ department. Hopefully soon!  Caitlyn’s debulking is scheduled for Thursday, May 17^th.  Another three-week stay is more than likely the plan.  At least this time I will be prepared.  Thank you to all the ladies who helped me come up with amazing ideas to keep Caitlyn busy and occupied while we are there!  I will make a point to keep Caitlyn’s website up-to-date from now on.  Please feel free to pass on her web link and share her story.  She is incredibly amazing and everything I wish to be! Love to all!!!

Mommy and Caity-Bug

Daddy and Caity-Bug