We waited about an hour for the radiologist to read the scan...."it's a hemangioma, something that will go away on it's own. A benign mass."...this is the message that the xray tech delivered to us from the radiologist. Amen! BENIGN! That's pretty much all I heard. Then I start to open my text books from dental school and look up this little 'bump'. Big mistake! Just google "infantile hemangioma" and see what images pop up. MQ's particular hemangioma is a subcutaneous hemangioma overlying her parotid gland, and it was rapidly growing. We were referred to a couple different specialists to decide a course of action. Most hemangiomas will involute (go away) on their own and require no treatment, but the type that MQ has usually take the longest (up to 10 years) to disappear and they can cause hearing loss, vision problems, facial paralysis, and/or facial disfigurement. Again, google "infantile hemangioma" and you will see what I mean!
Our doctors and Cara mentioned that Cincinnati had a "hemangioma clinic" and said that we may want to look into going up there. After talking to my dad's colleague, Dr. Rider, he recommended that we see Dr. Denise Adams at Cincinnati Children's Hospital in their vascular malformation/hemangioma clinic. So we did...and we are so glad that we did. She started MQ on some medication (it's actually a blood pressure medication) that has already given us amazing results! It's been a bit of a pain to drive up to Cincy weekly, but so worth it! Dr. Adams and her nurse, Carol, are just fabulous...and Cincinnati Children's is an amazing hospital!
MQ had to have an echo and an EKG to check out her heart before getting started on the propranolol. Again...no sedation was needed! The nurses were all shocked at how still she was for the echo that took almost an hour.
I think the hardest part was having to see all of the truly sick kids in that hospital. Dr. Adams is a hematologist/oncologist so every time we went to see her we went to the hem/onc floor, where we saw some pretty sick kids suffering from cancer. I just wanted to hug all of them when I saw them. It just didn't seem fair. Being there for a little hemangioma is NOTHING compared to what some of these other parents are dealing with. One child showed up today in the radiology waiting room obviously battling some type of cancer. Nathan was his name. He had only a few strands of hair, and his skin was as pale as a ghost. His mom wheeled him straight over to the video games where he waited until his name was called. "Do you have your port out and ready?"...the nurse asked this approximately 8 year old little guy. "Yep...it's right here", he answered so nonchalantly with a smile on his face as he lifted up his shirt to show the nurse. It was as if he had 'been there and done that', which I'm sure he has. I just wanted to squeeze him so tightly with a big bear hug. Instead, I just squeezed Mary Quin extra tightly as I held her in my arms waiting to get called back for a simple ultrasound on her cheek. All I could think of was Philippians 1:3, "I thank my God every time I remember you". I just felt so blessed to be sitting there holding my healthy little girl. Thank you, Lord, for her health.
The ultrasound revealed that there was still a "mass" on her left cheek, but it was definitely smaller than before. Dr. Adams called MQ a "wow case", because the propranolol doesn't always work on every vascular tumor. Again, thank you Lord! We won't be taking another trip up to Cincinnati for another two months. Hopefully the tumor will be even smaller by then! Thanks Dr Adams (and Carol) for all your great care! We'll see you in February :)
Here's Mary Quin after several weeks of treatment...look, no bump!
It's Meagan!!!! So glad that MQ's little bump is getting better. We are so lucky to have healthy children and I'm so glad that you wrote such a sweet post to remind us. Hope you all have a wonderful holiday! I'm going to try to get up your way right after Christmas to catch Katie while she is in from TX so I will call you so we can visit!
ReplyDeleteI wanted to thank you for posting this. I was googling "parotid gland hemangioma" and the image of your baby came up. My 5 month old baby girl has a mass in her parotid gland and is heading in to Children's for a MRI soon. We are hoping it is "just" a hemangioma. It's a scary place to be and reading your blog and seeing pictures of your sweet baby were very comforting. Thank you! I hope our daughters journey turns out as wonderfully as MQ's.
ReplyDeleteOur daughter, 5 months old, was diagnosed with capillary hemangioma - it's very much like the one your daughter MQ had - in the right parotid gland and it caused the swelling
ReplyDeleteof the gland but there is also a characteristic hemangioma stain on the inside of her right cheek.
Our doctor recommended to do MRI in one month and if the diagnosis is
confirmed - to do conservative treatment with Propranolol. Your doctors have more experience in treatment of this type of
hemangioma with Propranolol. I would like to know the approximate costs of treatment in Cincinatti Children's. We can only pay out of our pocket, since we don't gave nay US insurance. So I would appreciate your estimate.
Thank you very much for your reply! I appreciate your assistance in
this matter. Please reply to my email address: adenisov@liftsd.com.ua
Alexander from Ukraine
hi my name is Avie Laurent my daughter is Anya she was diagnosed with Deep Hemangioma over the parotid gland when she was almost three months old.She is now 1 year and 4 mths and her hemangioma seems to be getting bigger with another hemangioma peeping out at the side of her eye.I live in Trinidad,it is a very small country and help is really difficult here...there is only one E.N.T specialist and when we visit, there is nothing they can do but observe and assured me that it'll go away BUT i am scared for my baby i feel as if there must be something i could do instead of just sitting and waiting. so please if there is someone out there who can assist me please, i would be very greatfull...i read about the different complications this thing can lead to so please help me i'm desperate. my face book name is avie.laurent@yahoo.com and avie -laurent@yahoo.com. my phone # is 18683455790 or 18686684919.
ReplyDeleteThanking you in advance.