Boston Trip

It was an exhausting trip to Boston and I think we are all still recovering. We flew to Boston on Thursday and met with the doctor whom we had spoken with but not met. He repeated a sonogram on Lexi's back and then talked with us about the procedure. The only concern was that during the sonogram he found that she has microcysts surrounding her macrocysts. The problem with this is the microcysts make treatment more difficult to treat. In most cases a different drug needs to be used for the microcysts than the macrocysts and the microcysts are more difficult to inject. The big problem was that if the microcysts were not treated they would continue to grow since they were on the outside of the macrocysts. We had a long discussion about what to do...we had two options

-to treat as we had planned with the drugs they normally use and hope that the microcysts respond

-to use a different drug, a chemo drug to treat the microcysts and to use the original drug to treat the macrocysts. The big concern for us was that the chemo drug has only been used for this procedure in the US for six months and can cause long term effects. This would mean that she would need a chest xray every six months for 10 years. All of this scared me!

We decided to go with the original treatment this time and hope and pray for the best. If it did not work, we would use the chemo drug the next time.

She went to our room with us on Thursday and went in for treatment VERY early on Friday morning. The procedure took about three hours and the dr. came out with good news. It is very unusual for the marcocysts to drain into the microcysts but in this case that appears to be what happened. He showed us the video of the sonogram and it appeared that the entire cyst area filled with drugs. The hope now is that in six weeks when the sonogram is repeated it shows that the drugs are working on all the cysts. The hard part of the procedure was when Lexi woke up. The drugs are extremely painful and she was in so much pain. It was so hard to watch. She was given three doses of morphine before she began to settle and get comfortable. It was a really rough day for her and I'm glad that it is over. The trip was really long and so exhausting. The only way that Lexi was happy was when she was in the stroller and it was moving. I think Tom and I saw half of Boston on foot. We walked so much. On Saturday she was out of the hospital and my brother Mike who lives in Boston gave us a walking tour. The doctor thought it would be good for her to be out in the stroller and getting fresh air. We walked most of the day and saw much of Boston including a swan boat ride in Boston Commons. Thanks Mike!

So the plan from here is to repeat the sonogram in six weeks at Shady Grove Hospital and send it to Boston. The doctor will compare it to her other sonogram to see if the cysts are getting smaller and combining. If that happens, she will return to Boston in Oct. for another treatment. If the cysts are not responding, then we will need to discuss the use of the chemo drug to treat. So we just pray now that it is getting smaller and we will get good news in six weeks.

Lexi is feeling much better now. The pain is gone and the swelling is going down. She is happy and back to herself. I think she is so glad to be home and back with her sisters.

Thanks for all the prayers please keep them coming...

Comments

[Heather]

I've been checking the blog a couple of times a day since I knew you were up there (big surprise there). I'm curious about the chemo drug (must be the little bit of pharmacist left in me). I am happy that things went as well as they could have. I am sure it is all scary...still.

Things here just keep piling up. Never fear, we are getting by. I think about you all every day!! Try to enjoy the rest of the summer!

[Robin Mattox]

I've also been checking to see the news a lot. I didn't want to call since I knew that you'd be trying to get back on schedule. It sounds like things went well, and hopefully, the news will continue that way. Give Lexi a hug from all of us and we will keep praying for her!

[Angie Ebersole]

You can count on my girls and I praying for little Lexi. We will pray that everything works out for all of you. Please take care and let me know if I can help you in anyway. I am in pediatrics this fall so I promise to be a good helper for you!

[True Religion Outlet]

Times and Roku is what thye ARE NOT doing by keeping old business models while inventing new ones. Sort of one hand not knowing what the other is doing. Roku rolls out new platforms but hasn't tackled the key question of selling more boxes. You need one for each TV. Why not discount multiple orders for people with more than one TV? Financial Times wants to make online access free or pay depending upon the frequency of use, but it continues to charge customers TWO fees if the customer subscribes to print AND wants an subscription online as well. Do the people in office A ever talk to the people in office B