Planning Our Trip
Mood:  bright

Well, we are starting to make plans for our trip.  Everyone is asking if we are driving or flying.....we still don't know.  Right now with the price of gas, the cost to drive or fly works out to be about the same- $700.00.  I think we are going to try to see if we can get some last minute flight deals.  We were however able to get into to the hospital provided discount housing.  This will save a bundle compared to hotel prices! 

We are trying  not to think about the actual treatment at this time, but drown ourselves in making the preperations and trying to get in some good family time.

Treatment Scheduled in Boston
Mood:  bright

We decided and felt that God is leading us with Boston for Cassidy's treatments.  We were very happy and comfortable with Dr. Alomari when we visited and feel he has the experience that is needed to treat her.  I was excited when I called for an appointment.  They were able to get her in for her first treatment on June 17th.  I didn't expect to be able to get in so soon.  We will also have a consultation with the surgeon there.  We haven't decided if we will do the surgery here or there, but figured it wouldn't hurt to get an opinion while we are there.  Please keep us in your prayers-especially Cassidy!

 

BAD NEWS
Mood:  on fire

I haven't been able to post this information until now, due to my anger and frustration.  I finally had contact with Dr. Donaldson's nurse (here in Chicago).  She informed me that he spoke with the surgeon, Dr. Bauer, and they have concluded that they want to do surgery and he is no longer comfortable doing the treatments on her lip.  I was outraged by this information.  In my first visit with Dr. Donaldson he was committed to the treatments on her lip and gave me confidence in this.  Because of his confidence I cancelled her treatment date in Boston (that took over 4 months to schedule)

I am against surgery without sclero treatment and I was reassured in my stand against this from Dr. Alomari in Boston when I contacted him with this new information.  Without the sclerotherapy you cannot remove as much of the malformation and it increases the chance of regrowth.

I am now back to square one.  We are praying about this.  We learned in our one trip to Boston, how expensive it would be to have the treatments there not to mention the impractical aspect-however we were very happy with our meeting with Dr. Alomari and his knowledge/experience with this malformation.

Please keep us in your prayers as we begin again!

Results of Surgical Consult
Mood:  not sure
We met with Dr. Bauer and I don't know how to really respond regarding the appointment.  Dr. Bauer pretty much stated that he wanted to do the surgery first, however I have a lot to say about that.  I am not getting on my high horse yet until he talks with Dr. Donaldson.  I will let them talk it out and then we will meet with Dr. Donaldson and discuss what he thinks.  However Dr. Donaldson may want another MRI on Cassidy before we meet with him again.  I am waiting to hear back from his nurse on our next step.  Things are moving a lot slower than I was hoping!

What's Next
We are now just waiting to meet with the plastic surgeon in Chicago.  Dr. Donaldson wants to have Dr. Bauer's (surgeon) input on surgical plans (when during the process, what, and how).  We meet with him on March 5th.  I am a little hesitant.  Dr. Bauer is one of the physicians that stated Cassidy could not have sclerotherapy treatments 3 years ago.  I am however swallowing my pride to see he because he is excellent in his surgical abilities.

Home With Good News
Mood:  bright
Well, we finally made it to Boston and back after a few cancelled flights (snow), lost shuttles, and crazy drivers.  We had a great visit with Dr. Alomari.  He was VERY informative and gave us a wealth of information and insight.  He also encouraged us to have Cassidy's treatments locally.  We are so happy that we made the trip to Boston, it has given us more confidence and knowledge in her treatment plan. 

Boston-Here We Come

Our flight and hotel are booked for Boston!  We contimplated driving...but in the end it will cost the same amount of money and just longer to get there.  We hope to try to turn this into a fun Valentine's trip for Cassidy.  (I try to look at the trip as the most expensive Valentine's gift we'll ever do.) 

If the results from Boston are the same as from Chicago, than the process is as follows:

Visit surgeon

Update MRI

Set up Sclero treatments in Chicago 

Results From Chicago Visit
Mood:  quizzical
Well our visit with Dr. Donaldson in Chicago went well.  I was hoping to leave the visit more confident in the treatments.  Dr. Donaldson was wonderful and very informative.  He stated that there is most likely no way to avoid surgery on Cassie's lip.  After the sclero she will need some recontouring done on her lip.  He is however concerned that the sclerotherapy could damage her lip tissue and that could leave problems when it comes to surgery.  Based upon this information we decided and Dr. Donaldson encouraged us to have her evaluated by the interventional radiologist in Boston.  We can see if they agree on treatment type and the possible effects.  Lets hope and pray that they feel the same about her treatments......otherwise I will be seeking out a 3rd opinion in New York. 

GREAT NEWS!
Mood:  happy

I am so fortunate to work in the medical field and particularly the field that will be treating my daughter for sclerotherapy.  I had the opportunity to discuss my daughter's situation with an Interventional Radiologist I work with (Dr. Gilbert).  He went above and beyond and did some research on the Interventional Radiologist that Cassidy is scheduled with in Boston.  Although Boston Children's Hospital is #1 in the world, the radiologist scheduled to give her treatments does not have the years experience that Dr. Gilbert feels is beneficial in treating her.  He has recommended an Interventional Radiologist, LOCALLY, with many years experience in sclerotherapy for VM's.  He spoke with him about Cassidy and we are already receiving VIP treatment!!!  Cassidy is scheduled to be evaluated by him on Feb. 4th for possible treatments.  He will decide at this time if he feels confident in treating her.  Keep this in your prayers!!!

Thank You!
Mood:  bright
I am so thankful for all the prayers and support we have been receiving.  Everyone has been so great to let us know that we are being prayed for.  We have also received some care packages to help keep Cassidy content on our trips and during her recovery.  What a wonderful idea-THANK YOU!  Cassidy also loves to look at pictures of her friends and family-send us some!