Wednesday, May 12, 2010

Molly's Brain Surgery..... the story!

I haven't been meaning to put this post off, but I realized it is so hard to wrap my brain around what happened in the past few weeks, and trying to write it all out in one spot was harder than I thought. If you want the day by day of the experience, you can read it on our CarePage. Else, I'll try to put it into words here.

Monday, April 19 it was discovered that our daughter Molly had a brain tumor. She has had several small health issues in the last few months, and after ruling out several other problems, her MRI at the Children's Hospital revealed a lime sized tumor at the back of her brain. We were shocked! The Neurosurgeon came and told us that Molly needed surgery to remove the tumor or she would die. And that was it, no options, she had to have brain surgery.

Molly was admitted into the Pediatric ICU at Helen DeVos Children's Hospital immediately following the MRI, since she needed to be closely monitored until her surgery, on Friday April 23. During the week in the PICU we saw tons of different doctors, and met with the Neurosurgeon numerous times to go over what would happen during the surgery and the risks. The risks were very scary, there was a 2/3 chance the tumor would be malignant. And a 1 in 5 chance the surgery would cause posterior fossa syndrome and she would loose the ability to talk. These odds seemed horrible to us, but in a weird way, the fact that surgery was our only option, made them easier to bear.

Throughout the week, Molly got worse and worse fast. She started having trouble swallowing and walking, due to hydrocephalus from the tumor blocking the spinal fluid. She was hooked up to an IV and started on steroids and other different meds. to prepare for surgery. These made her sick, which was hard for her as she was throwing up all the time. We had lots of blood work, another CT Scan, dehydration, and a bunch or other tests as the week went on.

Friday morning, April 23 at 9am they started her surgery. The surgery went great! The Neurosurgeon said it was the best case scenario. They were able to remove all of it, and it wasn't fused, which is what we had hoped and prayed for. We were so relieved to know we made it over that hurdle.

That night was really hard. It was awful to watch the ventilator breath for her. She also was having spontaneous eye movement and sort of waking up and crying and coughing, but was really not awake. That night she was throwing up even though she shouldn't have had anything in her stomach, so they also ended up having to pump her stomach. She had to have another MRI that evening after the surgery. This is to make sure they got it all, the good new is, they did! We were thrilled. The tumor was a JPA, Juvenile Pilocytic Astrocytoma. And the pathology report came back to reveal in was not cancerous! We feel so lucky to have gotten such great news.

The next few days after surgery were hard. Molly wasn't talking or moving much. She had a blank stare and seemed very sad. After she started being awake more they started to worry she had a form of cerebellar syndrome or posterior fossa syndrome. After a few days, they stopped the steroids she was on completely. She was taking these to control the swelling of her brain, you are supposed to slowly tapper off steroids, but since she was getting so sick and acting depressed they decided that once the swelling should be under control to just stop them. This was the best thing we could have done. As soon as she was off the drugs, she started acting like herself again. She was talking and eating!

We finally got to move to the normal Pediatric floor. For here, as soon as they got her stomach to start feeling better, Molly improved really quickly. And the next day we got moved to Mary Free Bed(a therapy/rehab center).

We only ended up being at Mary Free Bed for 2 days! The therapists said she really was beating the odds, and when you have a tumor the size Molly had removed it should take weeks if not months to be back to where she is already!

The Speech Therapist said she was "blown away." And that Molly was sounding and talking fantastic. She did the different assessment tests and stopped because she was so far ahead of where she should be at her age. She said Molly will need no further speech therapy, not even outpatient! This is such fantastic news, considering 4 days earlier she was barely saying 3 words!

The Occupational Therapist was also so impressed. Everything she had Molly do, she did great. She even had her doing some higher level things just to see where she was at, it was fun to watch Molly acting like she did before surgery, she has such a great attention span for these activities. The Occupational Therapist said that she doesn't need any outpatient OT either!

The Physical Therapist was the one we thought would need to work with her the most. But we couldn't believe her change in the 2 days we were there. She was still a bit tipsy and leaned to the right, but was getting so much better. The physical therapist said that he really thinks as she gets her strength back she will improve on her own. They said for everyday that she didn't move, it will take 3-7 days to get that strength back, so we should see huge improvements in the next month! For the next two weeks we have to kind of spot her when she walks and let her practice and then we will go back to Mary Free Bed for them to test her and decide if they want to do any outpatient therapy here!

We also met with the child psychologist, which I was extremely happy about. Molly started to shut down a bit and stop talking and participating when other people are around. She also now hates anytime a doctor of nurse comes in and freaks out if anyone needs to touch her arms or legs or take her vitals. I wanted to make sure how we should deal with this and what to do to help a two year old deal with this traumatic of an experience. She really helped and thinks that Molly will do fine and is handling it just like you would expect a 2 year old to.

Since we've been home things are going great. Molly loved being in her own "pink" room. And is talking and walking like she used too. She is actually even walking better than she ever has!

Last week Molly had lots of different doctors appointments. She saw the Pediatric Ophthalmologist since her eyes are still not working together all the time. She also had to have a CT Scan, and spinal tap to make sure that they didn't miss anything from the pathology. This went great, and showed no sign of cancer! Over the next few weeks, and years, she has lots of follow up to make sure that everything is good.

It's hard to explain how the last few weeks went for us. Sometimes we are struggling, sometimes we are strong, and sometimes we still didn't believe it was truly happening. We had some of the best moments of our lives, and some of the worst. But we made it though.

Molly truly is a miracle! We are in awe of God's love and feel so lucky everyday to have been given such amazing daughters. Thank you all for praying hard and keeping sweet Molly in your thoughts. We will never forget this time in our lives, and never forget how much faith, love and support we received from all of you.

10 comments:

  1. Molly (and you guys) have a truly amazing story to tell. Even though you kept me informed through it all it is amazing to read all in one story. I cried reading it again because I just saw Molly yesterday and know how great she is doing. You guys know that Brad and I are always there for you if you need anything. We are not done praying and supporting you becuase there is a lot to deal with even though Molly is home. You know that if you need anything all you have to do is call me. Love you Guys!!!!!! *HUGS* KALLI

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  2. I have been so amazed at Miss Molly's story. What a tough little girl you guys have in her. I am so incredibly happy that your situation turned out as well as it has. I will continue to pray for you guys and the continual good health for Molly. I hope you know you had/have many people praying for all of you. So glad Molly is doing better. Hugs

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  3. Yay Molly! I'm so amazed at her tough spirit! I look forward to more updates and stories of this brave fighter. We're continuing to pray for you guys!

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  4. Wow, such great news! It sounds like everything went as well as it could under the circumstances. I'm so glad she bounced right back and won't need therapy.

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  5. I cannot believe everything you have been through, have been praying and thinking of you and Molly. So glad for miracles and how resilient your sweetheart is. An awful thing to go through, I am so glad everything has turned out well.

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  6. I am so excited that she is doing so well! Can't wait to talk to you more...about all the other craziness life has offered us on fb! :) I have missed talking to you!

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  7. I still cant imagine what a hard time this all was, but i am praising God along with you now! Boy, that pic of her in the hospital bed is tough to look at though, because i could not imagine that being my Brianna. You are a strong mommy and have an amazing little girl!!

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  8. Oh my goodness! Tears! What an difficult journey... glad to see her playing so happily today!

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  9. I wrote about Molly on my blog today!!! she is an awesome little girl, I just love her! give her (and Nora) Hugs for me!

    http://mommyseverydaylife.blogspot.com/2010/11/thankful-thursday_10.html

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  10. May Molly and her family EnJoY a wonderful Christmas!
    God Bless you ALL!
    (((hugs)))
    Leslie

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