Children's Hospital of Boston

Children's Hospital of Boston called us back this morning. Lexi's MRI and Sonogram were presented at their medical review on Wednesday night. They are confident with their diagnosis of Macro-cystic Lymphatic Malformation or LM for short. Essentially this is the same thing as a cystic hygroma but they do not use that term in Boston. So why did this happen to her? There is no way to tell why people get these. It was there at birth and is a rare chronic condition that according to them is seen quite frequently in multiples. So what does this mean? Because of its large size and the fact that it is macro-cystic they are recommending sclerotherapy as the first treatment option. They are thinking at this point she will need three sessions of sclerotherapy. They are not recommending treatment in our area but in Boston.  This will mean she will be admitted to Children's of Boston for a three day stay three different times, typically with two months between each session. They are recommending that we try to get her over 20 pounds before they begin treatment. This will allow them to give more drugs at the treatment session. She is around 17 1/2 pounds right now. So it is looking like she will begin late July early August. They are calling me back with a date and making sure that the doctor is comfortable with not seeing us before that appointment. If he wants to she her before the first treatment session we will go to Boston on June 19th. The hope is that with sclerotherapy the cysts will combine together and shrink and scar over. If this happens and they then become microcycstic at the end of three treatments, they will then attempt to surgically remove the malformation. If it does not become microcycstic buts gets smaller, they will monitor her for symptoms and make a new plan at that point.

They explained to me that it is a chronic condition for which there is no cure. The good news is that she could live with this condition and after sclerotherapy and or surgery be fine. The flip side is that some patients have issues. They said some girls have problems at puberty or while they are pregnant. It isdifficult to tell how Lexi's body will deal with this. They said there really is no way to know but to watch her carefully and monitor her symptoms. We will pray that she will be one of the ones that undergoes treatment/surgery and does fine throughout her life. She is strong - she has proven that since birth - and is a fighter..so I'm very hopeful that it will be ok.

We will need to watch the area of the LM closely between now and the first treatment for signs of infection which would be redness or swelling. I was so nervous today to get this call..mainly due to the fact that it has been so much waiting and not knowing. It feels good to know and have a plan of attack. When you get pregnant with triplets you get a LARGE paper printout from the doctor of all the things that can be wrong with your babies and reasons to NOT go forward with the pregnancy. So today it was hard to hear that there is no REAL cure for what is wrong with Lexi and that its something that she will have to deal with for life. But today I hugged her and was thankful that out of that long list of things that this is the one. It truly could be so much worse. She is going to have a long year undergoing all of this treatment and its not going to be easy on our family to go to Boston every two months but we will get through it knowing that it is where we need to go to get the best treatment/outcome for her.

Thanks for all the prayers and support! She is blessed to have so many people who care about her!!

Comments

[Robin Mattox]

I am so happy for all of you that there is now a plan of attack and you know what you're up against. She is such a strong little girl and will do great. We will keep praying for her and for your whole family.

[Amy Ferguson]

Still sending lots of prayers to your family - I'm glad they were able to come up with a plan for you - I'm sure that helps so much! As you indicated, I'm sure it won't be an easy course of treatment, but I know that with her strength (and yours!) she will do wonderfully!!

[Heather, Aaron, and Abigail]

Plans are good. Thank God for options, like being able to go to Boston. Uncle Michael will really get to know what it's like having kids around (if you take the whole fam). Your positive attitude is great. I truly think having a good outlook is half of the battle.