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

May 20th Appointments

Gotta love the wild hair in the morning!

I know this update is a little late, but hey have I ever been on-time with any of my posts?  In May we only had one set of appointments.  Due to the fact that it was going to be a very long day for us, I decided to bring my sister along for the great help that she offers Caitlyn and myself.  

Our morning started early.  Clarissa and I were up and out of bed by 3:30am.  Caitlyn was up and had a diaper change by 4:30am.  By 4:40am we were on the road headed to Milwaukee.  Our first appointment was at a Children's clinic that was off-site of the main hospital campus.  We arrived at 9am, just in time to get in to see Dr. Thometz (Caitlyn's orthopedists).  He looked at the x-rays that were taken just before we saw him and compared them to the x-rays from our previous visit.  Dr. Thometz was very impressed with how well her right hip was looking.  It seems as if the brace - which she still wears while she sleeps at night - is working and her hip socket is starting to form properly.  Due to how shallow the socket still is, he is requiring that Caitlyn still wear the brace for at least another four to five months.  I was very happy with the outcome of that appointment, especially since I was a little pessimistic heading into it.  I was most definitely worried that he would tell me that the brace wasn't doing its job anymore and she would eventually need surgery.  However, as of right now, she looks great and hopefully Cait's hip will continue to heal.


Appointment number two was actually a combined visit with Dr. Johnson (Caity's Interventional Radiologist) and a new addition to her team - Dr. King.  Dr. King is a orthopedic-oncologist and a musculoskeletal sugeon.  He would be the doctor, depending on how this appointment goes, that would perform Caitlyn's debulking surgery of her leg.  

We first met with Heather (Dr. Johnson's wonderful nurse) and Dr. Johnson and together we walked over to Dr. King's clinic.  The joint appointment honestly couldn't have gone better if I would have dreamt it up myself.  Dr. King was quite impressed with how well Caitlyn handles herself due to her large leg.  He went on to say, "Medically speaking she doesn't need the surgery."  Being the person that I am, I cut off his sentence and said, "Yes, yes she does."  I know on paper she looks great, other than obviously having KTS.  But at home, the doctors don't see what struggles that she faces and how difficult it really is for her to do all the simple things that most kids her age can do.  Clothing is a challenge in and of itself.  I hope we do not have to go another winter where she is forced to wear leggings because jeans and snow pants literally can't fit over her leg.  

The more Dr. King and I conversed the more I felt comfortable that he is the right fit for our team.  I made absolutely sure he felt completely and utterly confident in doing her debulking surgery before I agreed to having it scheduled.  He told me that although he has never performed this type of surgery on an 18 month old child he has done them on old toddlers and feels as if this case will not be more difficult.  He did say that Caitlyn would have to be off the chemo before the surgery could happen and that would be up to Dr. Kelly on when he wanted to take her off.  I told Dr. King that if it were up to me she would be off of it today.  


When our discussion was over with Dr. King, Dr. Johnson took over and performed an ultrasound of Caitlyn.  He was looking at the areas he treated with sclerotherapy back in March.  All of the cysts looked much smaller and some of them were just scar tissue.  We may possibly do another round of sclerotherapy in the future.  We did discuss the possibility of doing sclerotherapy one day and the following day doing the debulking surgery.  I was not too excited about that.  I really didn't want to put her under anesthesia twice in a 24 hour period and I also didn't want to compile two different procedures on top of each other and cause her more discomfort than she will already be in.  I think for right now we are going to focus on her debulking surgery and worry about doing another sclerotherapy treatment later. 


Just as Heather and I were getting on the elevator to leave Dr. King's department, Dr. King jumped in front of the closing elevator doors and told us to step out for a minute.  Of course I couldn't help but smile and giggle to myself because you don't normally see doctors doing acrobatics in a hospital ;o)  He told us that he just got off the phone with Dr. Kelly and Dr. Kelly said that stopping the chemo  today was fine and surgery has already been scheduled for the end of June.  Needless to say, I was wonderfully ecstatic!  Just then Dr. Kings entire team came walking up and I had the chance to meet and shake hands with everybody.  Caitlyn, of course, got the chance to flirt with everybody.  Giggling and talking on her Caity-language and completely soaking in all the attention.  

After having our little party in front of the elevators, Clarissa, Caitlyn, and I were finally on our way to our last appointment of the day - Dr. Kelly; but first, it was lunch time!  We had a fulfilling lunch at in the cafeteria of the hospital.  I have to say, as far as hospital food goes, Children's has all my local hospitals beat!  


We arrived in the oncology clinic a few minutes early and Caitlyn impressed all the ladies at the receptionist desk with her new walking skills.  The care-partners took vitals along with her height, weight, and head circumference.  Then we were taken back to a nice big room to wait for Dr. Kelly.   A few minutes later, Dr. Kelly came in and Caitlyn lit up.  Since Dr. Johnson made her cry while he was doing the ultrasound Dr. Kelly was her new best friend for the day.  He picked her up and held and talked to her for a while.  Caity was loving the attention and as always with Dr. Kelly went to play with his stethoscope and hospital badge.  The visit was pretty much short and sweet.  Dr. Kelly said that we no longer needed to give her the Sirolimus but to continue the Bactrim until her surgery date.  He said she looked great and was very happy to see her walking on her own. He prescribed Children's Claritin because I am pretty sure she has allergies. 


After our visit, Dr. Kelly rounded up some nurses, care partners, and other helpful staff in the oncology unit and we all headed out to the waiting room.  I read from a plaque on the wall and then helped Caitlyn reach up and grab the string of a bell and she rang it.  Everybody clapped and cheered for her - Hurray chemo is DONE!  With 11 full months, I was glad it was finally over, but to my surprise it actually worked and helped her, so I don't regret every making that decision to put her on it.


We left Milwaukee at about 3pm and I have to say, I don't think I have ever left the hospital feeling as good as I did that day.  Every appointment was so positive and we received such good news with every doctor that we spoke to.  What a great feeling to have!  Caitlyn's surgery has been scheduled for the 28th of this month.  After Dr. King is done with his procedure then a GI doctor will come in and perform another upper endoscopy.  This will help us determine whether or not Caitlyn really does have Celiac disease or not.  So I am quite excited about those results as well.  Instead of sending Caitlyn home on oral antibiotics, Dr. King and I discussed the possibility of just keeping Caitlyn in the hospital on IV treatments since she has never handled oral antibiotics very well.  I think that is a wise decision and I hope that is what happens.  As much as I would like to be home, and hopefully in time for Independence Day, I think keeping her healthy is much more important so I most definitely think IV antibiotics is the way to go.  


I will post another update if anything changes but definitely after her surgery.  I may even get on here and blog while she is in surgery.  I'm going to be a nervous wreck so I think keeping me busy and getting my thoughts on paper may be a somewhat therapeutic for me.  I was so excited at first about her debulking surgery but as the days wear on and the 28th gets closer and closer I'm finding myself getting more and more nervous.  I am quite literally putting Caitlyn's life in Dr. King's hands.  He did say there would be blood right in the OR should she need it and I know everybody working on her that day are well trained and I wouldn't want to be anywhere else, but I can't help but feel so scared for her.  It is times like this where I just wish there was a way for me to take all her problems away and make them my own.  It wouldn't even be a question if I was given the chance to do that for her.  I love her more than life itself and it just makes my heart break to witness all that she has gone through and will soon endure.  My poor little peanut.  But like any strong person, I'm sure she does not want my pity and when she gets older she will say, "Mom, really?  Knock it off, I'm fine!"  I will raise her to be strong-willed and to be the person that she wants to be.  


On cue, Caitlyn is waking up from her nap.  So I must go play with her and her new LeapPad and maybe watch some Little Einsteins or Backyardigans.  Much love to all and as I've said a hundred times before, thank you all so much for your thoughts, prayers, and support.  The emails that I receive from you just brighten my day and help to keep me a motivated advocate not only for my daughter but for all of Caitlyn's KTS brothers and sisters!

My little LoveBug

Continuing After My Small Hiatus

Since Caitlyn's second sclerotherapy treatment in January I decided to take a small hiatus from blogging.  With going to school full time, Caitlyn having another bout in at the Children's Hospital, another sclerotherapy procedure in March, and more surgeries to come I just decided to take time from giving updates and just focus on Caitlyn and myself.  So let's get back to where we left off because there is so much to tell!


Just a couple of days after blogging in January Caitlyn and I were back at my local hospital.  I took her in because she had been experiencing a horrible case of diarrhea lasting since her sclerotherapy procedure earlier in January.  I had taken her to urgent care a few days before where they took some stool samples but those tests were all coming back negative.  On this particular evening, the diarrhea was now accompanied with a fever, so to the ER we went.  The ER doctor was going to send us home since her blood work and a urinalysis that they ran was coming back normal.  Before we left he wanted to give her another dose of Ibuprofen since her fever was starting to go back up.  Immediately after administering her the orange liquid Caitlyn proceeded to vomit it all back up.  The doctor decided, and I agreed, it would be best just to keep her overnight for observation and see how she felt in the morning.


Throughout the night her fever started getting worse, reaching a max temp of 105.  The nurse kept administering Tylenol in the form of a suppository which seemed to help but the fever just kept coming back and the diarrhea was still holding strong.  I called down to Milwaukee to let Dr. Kelly (Caitlyn's oncologist) know what was happening.  He said he did not want to transport her down so late at night, instead he would speak with Caitlyn's pediatrician in the morning and come up with a plan then.


The next day there was a lot of back and forth of the doctors trying to get a hold of each other.  Finally, a plan was set for Caitlyn to be transported by ambulance from Eau Claire to Milwaukee.  The transport had to be made soon because there was a major snow storm heading towards Milwaukee and it wouldn't be safe to drive once it hit.  After waiting all day a new plan was made to transport me and Caitlyn by jet to Milwaukee.  They figured the roads were just too bad to drive one and flying would be safer.  It wasn't until 9:20pm when we were up in the air and on our way.  Once to the Children's Hospital we were warmly welcomed onto the HOT Unit.


Since throughout the day, Cailtyn's fever had started to subside they hooked her up to some fluids, took some blood samples and stool cultures, and she was monitored for the night.  Over the course of our two week stay, all stool samples and blood tests were coming back normal.  Food was starting to, literally, pass right through her.  She was put on complete stomach rest and was given a fluid through a PICC - which Dr. Johnson placed - called TPN.  This had all of the nutrients she would need while her stomach was resting.  While on the TPN her diarrhea started to subside and she was starting to act more and more like herself.

Entertaining Caitlyn on the floor - the crib gets boring after a while

A gastroenterologist, Dr. Noel, thought it would be worth it to do an upper and lower endoscopy.  Come to find out, there is a possibility that Caitlyn may have Celiac disease.  To be quite honest, I don't think she does.  I have been feeding her a regular diet, without excluding gluten, and she has done just fine.  Gaining weight and feeling great!  Another upper endoscopy will be done towards autumn of this year and we will see what Dr. Noel finds then.


Even with the results that Caitlyn might have Celiac it still didn't explain the sudden horrendous bout of diarrhea lasting for four weeks.  The assumption is that she caught a virus and had a hard time fighting it off and the end result was the diarrhea.  She had a nasogastric tube put in place because the doctors didn't want to immediately start her back eating again once she was off the TPN.  Instead, they started her on a Similac formula called Alimentum which was gradually increased as the days wore on. 


Caitlyn was discharged home and left with the NG.  After pulling it out about seven minutes after the nurses placed it in the first time, she had seemed to forget all about it; so I wasn't too concerned with taking her home with it still in place.  Needless to say, the little stinker pulled it out just two days after being home.


Since then there she has been healthy and gaining weight with no signs of Celiac.  We were back down in Milwaukee for Dr. Johnson to do another round of sclerotherapy at the end of March.  This time, her procedure was actually filmed and I was interviewed.  Caitlyn was a natural on camera!  Caitlyn and I were again warmly welcomed by the nurses and doctors at Children's hospital and stayed the night for observation.  She was discharged the following afternoon with no signs of any complications per usual.


Once she was discharged we headed on down to see Dr. Thometz (Caitlyn's orthopedists).  While she was sedated for the sclerotherapy, occupational therapy came in and made a new brace for her to wear since she had completely outgrown the one that she has been wearing since September.  The most recent xray of her hip showed it was "subluxing out" which meant that it was still in but it was starting to come out - at least that's what I understood from our visit with Dr. Thometz.  Her hip socket is still pretty shallow and we are hoping that by keeping her in the brace during naps and at bedtime it will help fix itself.  If not, then she may require another surgery down the road. 


While we were there Dr. Johnson and I discussed the idea of taking Caitlyn to Boston to see a world famous doctor - Dr. Fishman.  The purpose would be to get an opinion about Caitlyn undergoing a debulking surgery that would help take down the girth of her leg.  Caitlyn's team of doctors were in agreeance and felt that Boston was an appropriate option at this point.  I have agreed to go and now we are just waiting to hear back from Dr. Fishman and see if he is willing to take on her case - at least for opinion's sake.


Our next appointment has been scheduled for May 20th with Dr. Johnson for a follow-up from her sclerotherapy and also with Dr. King who is an orthopedic oncologist and musculoskeletal surgeon.  We will be meeting with both doctors at the same time.  After Dr. King takes a look at Caitlyn and her history we will discuss the possibility of him performing Caitlyn's debulking surgery, but only if he feels comfortable taking on her case.  If he does feel up to this challenge then I'm hoping I won't have to take Caitlyn to Boston.  As much as I would love to travel there, taking an 18 month old that far away, by myself, is not going to be any easy task.  But I would obviously do it if that was what Dr. Johnson and Dr. King felt was best for her.  We will just have to wait and see.


I have to say, that it has been very nice this past month not having to worry about when her next appointment is going to be and trying to work everything around our trips to Milwaukee.  We were able to breathe and just let Caitlyn live "normally" for a while.  We have 20 more days until our next visit, so it will be like we could be some-what stress-free for two months.  What a wonderful feeling.  Now the summer is coming and I will be focusing on going back to work, after taking a year off to take care of Cait, and now her upcoming surgery(ies).  I'm hoping to have these surgeries done this summer so I can start going back to school in the fall, full-time.  This will be new for us so I'm not exactly sure how these surgeries will go, it seems to be a waiting game for the most part right now.




A few updates with Caitlyn's development:

Caitlyn enjoying her first time at the park!

On April 26th, Caitlyn took three whole unsupported steps right into my arms.  With every step she just laughed and laughed!  Then, just last night, Peter and I were able to get her to walk half-way across our living room and back again, all by herself!  She was kind of half walking and half shuffling her way and sort of sidestepping it but she was doing it all on two feet - it won't be long now!  I have also noticed that she has been quite fussy lately so this morning I decided to take a peek inside her mouth and noticed that she now has a total of 12 teeth - two of which are still coming through the gum line.


So thank you all for baring with me, I know it has been a long time since I have made an updated post available for you all.  I try to tweet a few times a week that way you can stay in the loop of Caitlyn's daily accomplishments and activities.  So be sure to check out the twitter feed on the left side of the page if you haven't done so already.  I will post again soon, but right now it's time to take Caitlyn to the library.  A perfect place to be on a rain Saturday afternoon!




Much love to all!!!

Interesting MRI and Ultrasound Images

Here are some awesome images of Caitlyn's sclerotherapy on the 13th as well as some MRI shots of Caitlyn before we started the chemo, and again in December when we found out the chemo was working.

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!!!

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!

November 5th Milwaukee Appointments

Our day started bright and early at 3:00am when my alarm decided to tell us it was time to get up and get ready.  Since we had a 4 hour drive and Caitlyn's first appointment was at 8:00am we were out the door and on the road by 4:00am.  Thankfully, Caitlyn slept the entire way down. 

We were in Milwaukee by 7:00am...an hour early!  We stopped for gas and to feed Caitlyn a light breakfast and headed to one of the off-campus clinics to see Dr. Thometz, Caitlyn's orthopedists.  One the way to this clinic, which I had only been to one other time, I realized I was going to the wrong one, this was just another time our GPS saved us, it also helped that we were in Milwaukee so early. The xray that was done at the clinic looked perfect and Dr. Thometz said he wanted an MRI of her hip in 3 weeks and if everything came back looking good then we would be able to remove the splint and only put it on her for bed and naptime!

It was off to the main Children's Hospital campus to meet with Dr. Kelly, Caitlyn's oncologist.  The appointment didn't really provide us with any information that we didn't already know for Caitlyn's present state.  He did say he would prefer Caitlyn to stay on her chemo for at least another few months and then we would go from there.  We talked about what sort of things to expect as Caitlyn grows and how her lymphatic malformation may change as she gets older.  We discussed whether or not we should hold her back from doing things that babies, and then toddlers, like to do as they learn to walk and run and wanting to play rougher.  I don't want to be the overprotecting mother who wraps her child in bubble wrap before sending her out to play, however I also don't want to be so overprotective where she won't ever get to do anything.  I think kids need to fall down, just to learn how to get back up but Caitlyn is so different than any other child I just don't know how to balance this out yet.  Any advice?

The first thing I learned when studying KTS 101 was KTS patients are prone to getting infections, even life threatening, because the skin will breakdown and become vulnerable to bacteria.  This could happen with anybody, however KTS patients are much more susceptible to these sorts of infections.  Which is why, ever since she was a newborn and her diaper area became so red and her skin was cracking, I blow dry her whole body after every bath and areas that become moist in between baths.  This includes her diaper area and her little bottom, the little creases behind her knees, between her little rolls under her chin, and lastly her armpits.  Up until our travels through cast-ville, Caitlyn's skin has always looked great.  Since I now can't get to all of these places all of the time with the blow dryer her skin has started to get red again, even in places that I never worried about before.  Like on top of her lymphatic malformation, this is happening because the cast rubs the skin while she moves.  So because of the troubles with her skin it was then off to the Dermatology clinic so I could brainstorm with the doctor on how to prevent some of troubles.  The doctor took some cultures of the areas of Caitlyns body that was affect with breakdown.  She then wrote out a couple of prescriptions and told us when the results came back from the lab she would call to let us know which prescription to have filled and start using.

Our day still wasn't over.  It was 2:30pm Caitlyn still hadn't eaten lunch or taken a nap and we had one more appointment to get to.  She was holding it together pretty well with only a couple little episodes of crying which only lasted until I picked her up and held her.  We stopped and fed Caitlyn a quick lunch and headed on down to Occupational Therapy.  Caitlyn's splint needed adjusting however the ladies that make the splints in occupational therapy said it would just be easier to create a whole new one for Caitlyn instead of trying to fix the old one.  Needless to say, I was very happy about this decision!  After two months in this splint, and with episodes of diarrhea Caitlyn definitely needed a new splint.  It took about an hour from start to finish and this cast was much better fitting and so much smoother around all of the edges.  I was very happy with the outcome of the new cast.  Now, I will use the old one to put on her and give her a somewhat normal bath again!

Appointments were finally done, we left Milwaukee were home by 9:00pm, and Caitlyn was in bed by 10:30pm.  A successful day; long, but successful.

Words of Encouragement

So I just received a wonderful email from a woman name Bonnie and I thought I would share it with everyone.  It's nice to know that there are other people in this world going through what Caitlyn and I are going through.  Maybe this will help others out there to know they are not alone....

"Hello, Sondra,
I participate on the KT listserve, and I came across your blog link.  I didn't get a chance to read through everything, but enough to let me know what our daughters share in common.  My seven year old daughter, Adriana, was born with dislocated hips and a right flank capillary lymphatic venous malformation, among other things.  She had an open reduction with femoral osteotomy at age 7 months followed by three months of spica.
I remember the incredible stress of that time all too well.  I would look for advice on the hip sites, but most of the experiences seemed so simple and straightforward.  They didn't have to deal with the stress of potential blood clots or worries that malformations might swell suddenly under enormous casts.  Not many on the KT site had experience with surgery on infants.  We used to say she had Adri syndrome, and she just couldn't get special enough.
Now, she is in second grade, and is doing so much better than what I imagined as an infant.  Her differences have helped her become kind and resilient.  She doesn't play soccer like her brothers, but she can sure swim.  We have tried to help her weave her story of her medical trials into one of strength.  She is proud of herself.  And can I tell you that sterilized femoral hardware is quite the showstopper for show and tell, should your surgeon offer any momentos.
I hope you don't mind this email.  It took me a long time to learn to keep my daughter's future where it belongs, in the future.  I sincerely hope your beautiful daughter will continue to amaze and delight you.  Hang in there.  I will be thinking of you in your journey through Spica-ville.

Bonnie"

I wonder if she knows....

Being happy and playing 
while Mommy blogs...

So I was sitting here this brisk, cool, morning watching Caitlyn play on the floor with her toys and I started thinking to myself, "I wonder if she knows that she is different?"  And I don't mean different in the sort of way that she is a different person than you or I but different in the way her body was built.  This is all she has ever known in her life:  a large left leg and a small right leg.  I just can't help but think that maybe she notices that each of her legs are very different in size and shape.

Maybe she doesn't know right now, but I someday she will....and what a horrible day that will be.  I am going to have to try and explain to a beautiful little girl that God made her different than Mommy and Daddy and all the other little girls and boys.  And I will have to do it in a way that won't frighten or sadden her.  I have been thinking about this unavoidable conversation that I will have with her since before Caitlyn was born and to be quite honest it scares the hell out of me. 

Am I overreacting? Or putting too much stock into this when really it won't be so bad?  Either way, it is going to happen and I can't get out of it.  I guess right now I am just going to have to have fun with her and hope that she doesn't notice that she has two very different legs and when she does finally come up to me and ask about herself I will just have to deal with it then.  I don't think any amount of preparing is going to help; I think that I will just have to say what comes to mind.  I can try to think of what I should say and get it all mapped out in my head but when it finally happens I think my heart is going to take over and it will help me tell the right things to her.