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