Another MRI Done!

It's been another 3 months already, so it was time for Molly to have her quarterly MRI. We spent today at the Childrens Hospital and then got to go from there to meet with her Neurosurgeon this afternoon. We are happy to report that things look stable, and Molly is cleared for another 3 months! Such an answer to prayers and a relief, I won't lie, I was very worried this time. Her Neurosurgeon said that there is a 2mm spot he wants to watch really closely that might be residual tumor, but that "nothing jumps out at him that would require immediate action." Molly will still need to have MRI's every 3 months for another year and a half at least, and then depending on how things look she can move to every 6 months. I am looking forward to when she will be old enough to have these tests with out needing sedation, it is definitely a long, stressful morning for Molly and all of us.

Today is also my husband and my 8th anniversary, so we are heading out for dinner to try and relax, and then I am ready to be done for the day! I think I could sleep for a week!

Miles for Hope 2011

Saturday, July 23 our family, along with a great group of extended family and friends participated in a 5K run/1mile Family Fun Run with Miles For Hope to help raise money for brain tumor research, raising awareness of brain tumors and to help provide travel for brain cancer/tumor patients and there families. (if you want to read Molly's brain tumor story click HERE)

Team Molly! This great group of family and friends came out to walk/run with us!

Cousin Cassie and Aunt Beth ran the 5K, and Molly's Aunt Beth raised over $300 for Miles for Hope!

Molly's race number!

Our Survivor!

Molly and her Cousin Maisy!

After the race, any brain tumor survivors went up front and Molly got a backpack full of goodies. The three survivors were all children! We are definitely very lucky to have Molly still here and doing amazing! We feel very blessed!

One Year Ago!

One year ago today was very different than today. One year ago we were in the hospital while Molly had brain surgery. It was definitely the hardest day of our lives. Serious highs and lows on an already anxious mind. But we made it through that day and the day after... and some how made it to a year! This week, no matter how much I tried not to think about it, I found myself looking back on everything, and being in awe of where we are today!

Molly is doing AMAZING! Today we had a special Molly day, Nora went to spend the morning with my mom, so Randal and I could take Molly out and about alone. We let her choose, and we ended up at the Children's Museum, then went out to lunch just the 3 of us. After that we went to pick up Nora, and the family went to ride the carousel and let her make a bunny at Build A Bear. Yup, today she got spoiled! I know, I know, but I think we do a pretty good job not treating her different or spoiling her most of the year, but today was special, and fun! She deserved it after the day she had a year ago.

And because no post is complete without a cute picture, here is Molly pretending to call her friends on my old broken cell, aka her phone! I should video tape these conversations, SO funny!

Picking Glasses!

Yesterday Molly had another appointment with the Pediatric Ophthalmologist. The appointment was long but went really good (thank you so much to our great friends for watching Nora, she had a blast). The doctor was happy that Molly's turn stopped getting worse (she is checked every 6 weeks). She wants Molly to wear glasses for 6 months to see if it will help with her depth perception, strengthening her eyes and her mild near sightedness. In 6 weeks, she will go back and find out if they want to use a patch with the glasses too. We are hoping this helps, it is definitely worth a try before we have to do surgery to fix some of the issues her brain tumor had on her eyes. Molly was very excited to pick out pink glasses this afternoon, and was sad when she couldn't take them home today. :)

MRI Tomorrow!

Alrighty, it's that time again! Molly has another MRI tomorrow morning at the Children's Hospital. (For those of you who don't know, Molly had a life threatening brain tumor and had a successful surgery last April . Now she has to have MRI's every 3 months. If you want to read her story go HERE.)

So we are getting anxious for tomorrow, and praying for strength and that everything goes well. We won't get to meet with the doctor to find out how it went until next Tuesday, so I am worried this is going to be a very long weekend.

But today Molly was great! She was very excited to give her friend a birthday card she made ALL by herself, she wouldn't even let me help write on it. Then she made her bed ALL by herself, this is a new trend I am liking. :) And she even got to paint artwork for the basement toy room!

I picked a 2 pack of canvas up at Hobby Lobby a few months back for Molly to paint for the toy room. They have 2 packs for just under $6, and if you print off a coupon even cheaper! Molly was thrilled to paint these to hang up.

Molly Update!

This past week I've been so nervous about Molly's appointment I haven't been doing anything I normally do. Now that it's done, me and the girls have been cooking and crafting like crazy and I have tons of fun things to share. :) And I am a week behind in reading all my friends blogs, I can't wait to sit and catch up. Thank you all for thinking of us this week.

Here is the update from the carepage. And, if you are new to my blog and this story, you can read about Molly's brain tumor and surgery here.

Today(Friday) Molly had an appointment with the Oncologist to go over the MRI from last week Thursday and for them to have a check up with her. This is always a long appointment, we first get checked in and then she has vitals, then a little later she has a physical, and then later she sees the doctor. Molly did great with all the waiting in between and stuff, they have a great toy/play room with child life specialists and paint, yup, paint is Molly's favorite, she was so happy!

The report was great. There was no change since July's MRI, which is fantastic! We were hoping that the mass would be gone this time, but now it looks like it won't be going away, so we will just hope and pray it continues to stay the same. As in July there is still something present in the posterior fossa region and the midline surgical tunnel that extends into the fourth ventricle is enlarged. There is also enhancement in the area the tumor was removed that is out of the ordinary, but as long as it doesn't grow or change consitencey they are just going to keep watching it. No change is good. :)

They did say during her physical that they were concerned about her eyes and think there might be some muscle damage. We do have an appointment with a new pediatric ophthalmologist next Thursday, so we are praying things go good then, and they can give us some answers on fixing her eyes.

Else, in 3 months she will have another MRI with her Neurosurgeon, and then another one in 6 months with the Oncologist again. Hopefully we make it through this next year with things staying the same, and can feel better about everything. We are constantly reminded watching our Molly how lucky we are things turned out so good, I can't believe where we are today, only 6 months after all of this started. We truly have been very blessed. Praying today for all of the sick kids we spent time with at the Hem/Onc clinic and there families.

Molly's MRI Tomorrow and Some Pictures

Tomorrow morning we are headed to the Children's Hospital for Molly's MRI. It has been 6 months since her brain surgery (click HERE for the story). Sometimes it feels like it all just happened, and sometimes it feels like it's been years. Having MRI's every 3 months is a quick way to make me nervous.

I would be lying if I said I wasn't nervous, but I think most mother's would be. Every time Molly has an MRI she is sedated, which makes me nervous too. This time we won't get to meet with the doctor to go over the MRI until next week Friday when we see her oncologist. So, I am getting ready for a long week of waiting and worrying.

She is having a lot of issues that remind me of before we found the tumor, so I am very worried what they will find. But I am hoping and praying for the best, and am unbelievably thankful and blessed to have beaten so many odds and to have Molly home and doing great. :)

And that we have so many wonderful family, friends, and people praying for her as well!

Molly's Miracle "Fun"draiser!!!

Last week was a crazy, fast, busy, amazing week!!! Friday night my sister, aunts, cousins, mom and friends threw the most amazing fundraiser for Molly at the Grand Rapids Children's Museum. Over 500 people were there! I can't believe all the wonderful people that showed up to support Molly!
We can't even begin to know how to thank you all!!!

Here are some pictures from the event!

Here is part of the silent auction that raised over $2,000 for Molly's medical bills.

They had yummy popcorn from Celebration Cinema and pop/water for sale.

They had Team Molly shirts, baseball style and ones with the logo (like Molly's below). We still have these for sale if you are interested, they are $15 each.

And of course, SO much fun stuff to play with at the museum!!!

And, lots of love and support from family and friends!

Thanks again to everyone who came or was a part of this great night!!! And a special thanks to the committee of family and friends who worked SO hard to put this together, and my fantastic event planning sister, Aunt Beth!!! You are all AWESOME!!!

Garage Sale For Mollers!!!

We have been working hard this week, having a GIGANTIC garage sale at my parents house to raise money to help with Molly's medical bills. I am totally in AWE of all the amazing people out there. I still can hardly believe how well the garage sale went!

First, so many of my family and friends donated so much to sell at the sale, and big ticket items! Second, my sister, mom, dad, brother, grandparents, aunts, cousins and friends helped set up and run the garage sale! Even on a 90+ degree day! (my 8 month pregnant friend even worked with me in the heat today!) They are THE BEST! And third, SO many people were so generous and donated more than they spent. We even had someone donate a huge bin of stuff to put at the sale. People are so nice and I truly hope I will be able to pay it forward. I don't even know how to begin to thank everyone, but I truly appreciate everything. :)

Thoughts and A Bit of Nora Cuteness!

I don't normally write posts like this, but since I've been missing in blog world for a week or so, I thought I should let you know what I've been thinking, who knows, it might me therapeutic. Basically I've been having a really hard time emotionally lately, and after last weeks MRI I think everything is just catching up to me and hitting me all at once. It was a crazy 3 months and we just went day by day and got through them, but now that life is getting back to normal, I have time to let it all sick in.

I try not to complain about things (except to my sister and best friend, they have to love me and not judge, lol). I think that everyone is having some sort of struggle or issue of there own, and I don't want to complain about mine, I believe we just need to make the most of what we've been given, and be happy. With that being said, it is way easier to believe that than actually live it. I am worried all the time about, as bad as this sounds, my kids dying. After Molly's brain tumor, and how bad she got, the reality that there was a chance she wouldn't make it really hit hard. And now that she is doing better and we are home, anytime her or Nora do something adorable or sleep or play or... it hits again how much I can't live without them, and then I worry some more. It is a vicious cycle.

Anyways, last week, I just sort of hibernated in the house with my girls. We didn't go very many places, and didn't clean, just played and laughed and enjoyed. Then on Friday, my friend Stacy took me and the girls to the zoo, and at night my sister took me to a girls night at my best friend from middle schools house. It was very fun, and just what I needed to get back into the swing of things.

I know I shouldn't worry, but I am having a hard time with it this week. I also feel guilty that I'm not always the strong mom I should be in this situation. Sometimes I am very strong and have it under control, and sometimes I'm a mess. Either way, I have an amazing support system, a wonderful husband, great family and friends, and the most amazing daughters in the world! And I feel very lucky for how well things worked out for us, and how great Molly is doing!

Nora laughing cheered me up a lot this week. :)

Molly's MRI Today

Here is the update I posted on the Carepage about Molly's MRI today.
If you want to read Molly's story click HERE.

Molly had her first 3 month MRI this morning. The actual MRI went really good. The person before us didn't show up, so Molly got to go in an hour early, which was really nice. She wasn't freaking out too bad until the actually IV, which was better than we anticipated. They also numbed her hand a new way which only takes about 30 seconds, instead of the old numbing cream which would take over a half an hour. They gave her propofal to knock her out, and the actual MRI took an hour. When she came back, she woke up easily, which is great, but was very silly and out of it. She was starving(since she couldn't eat or drink anything before the test), so she had some juice and chips, and finished coming around. Then we could get her ready and head over to the Neurosurgeons office.

At the Neurocurgeons office they looked over the MRI pictures, and told us that they show there is still something on her brain. They are not sure yet exactly what it is. It could just be something not absorbed from the surgery or a blood vessel, but it could also be part of the tumor left or another very small start of a tumor. It is small right now, so there is not a worry they should be doing anything yet. Basically he said in 3 more months when they do another MRI they will be able to get a better idea of what it is. If it is getting bigger, then it would be a tumor, but if it is the same or absorbing it is something else.

So, we are going to look at this as good news. We are very lucky with how things have gone for us so far, and Molly is doing great. Things aren't completely perfect and clear like we hoped, but they definitely are much better than they could be.

Just something interesting too, on the pictures they show us of Molly's brain, there is an empty area where the tumor used to be. When we asked if that was going to fill in over time, the doctor told us it wouldn't. We think this is so crazy. Our smart little Molly will always have an empty hole in her brain? Weird. The human body is definitely fearfully and wonderfully made. What a miracle it all works.

Molly Update and MRI Tomorrow!

Here is a quick Molly update for those of you who were wondering how things are going. I posted this on her Carepage today.
To read a bit on Molly's story go HERE.

Hi everyone!

I thought it was time to do a Molly update and let you all know how things are going. Molly is doing great, and is loving being home and enjoying the summer. Most of you know that about a week and a half ago she fell down the bottom few stairs in our house and broke her arm. I know, I couldn't believe it, poor girl has been through enough this year. Anyways, we had to go and have it re-xrayed in the cast this morning to make sure it was healing correctly. It turned out it hasn't healed at all and is maybe a little bit worse, which is discouraging, so we will go back next week to have it xrayed again and hopefully see improvement. (mom is trying not to worry why it isn't healing.)

A few weeks ago, we also saw the Pediatric Ophthalmologist again for Molly's eyes. She said the double vision is probably gone, YEAH, and things are looking about 80% better, YEAH! So, as for now, they are going to continue to watch and see what happens here. We still notice one of her eyes drifting now and then, and her winking to refocus, but not near as much! We also had a follow up at Mary Free Bed, which went fine, they were very happy with her progress.

Tomorrow is the BIG day! In the morning Molly will have her first 3 month MRI with the neurosurgeon. For the next few years, she will have an MRI ever 3 months to make sure everything looks good, that there is no trace of anything unusual, and that the tumor is not coming back. Then they will eventually switch to every 6 months. We are getting pretty nervous about this, and anxious to get through it. The actually MRI takes about an hour, but since she is only 2 she has to be put under for it, and needs an IV. We are praying this all goes smoothly for her, Molly is very, very nervous around doctors now, after everything she went through and tends to freak out. After the MRI, we will get to meet with the doctor and go over the results in the afternoon. It is nice not to have to wait for these, and hopefully will help us not to have as long to worry and think about it. I will update here tomorrow night and let you all know how things went.

Thank you all so much for your continued thoughts and prayers! The support has been amazing, and we really appreciate everything.

Neurosurgeon Appt.

Here is the new update from our Carepage-

Today Molly had a follow up appt. with Dr. Skarli's office. He is the one who did her surgery. Everything is going great, they just talked to us about how she was doing, and answered my long list of questions. We also got to see all of Molly's MRI and CT Scan pictures from before and after the surgery.(they actually are giving us a copy of all the pictures on a disk!) This was crazy, seeing the tumor really hit home about the actuality of how bad things really were, and how lucky we are to have her here today. We are so blessed for every minute we get to have Molly in our lives, and are just unbelievably grateful that she made it this far and is doing fantastic. God has big plans for her.

Her next MRI is scheduled for July, and after that we will met with Dr. Skarli again to go over the results. Molly will need MRI's every three months for a few years. In a few weeks, she has an appt. with all of the therapists again, to check in on how things are going. But else we have a nice break from the medical world.

If you have any questions about anything with Molly. Her hospital stay, surgery, the actual tumor, JPA, etc. Feel free to ask, or post them in the comments and I will be happy to answer them.

Hoping everyone has a great holiday weekend. We are so grateful to have all of you in our lives, God Bless!

Molly Physical Therapy Update

I thought I would update here the same thing I posted on Molly's Carepage, in case you don't follow there. :)

Today we headed to Mary Free Bed, outpatient this time :), for Molly's follow up physical therapy session. 2 weeks ago when we left there, Molly still wasn't able to walk on her own, and kind of leaned right a bit and didn't quite have her balance back. The physical therapist thought that with how fast she was improving, that with a little more time to get her strength back she would be doing much better. So, instead of decided to do outpatient therapy then, he wanted to check her after she had time to get stronger.

So, today was the day they were going to decide if she would need more therapy or not. Molly met with the physical therapist this morning for an hour. Molly did fantastic, and was having a lot of fun playing the "games" with the therapist. They decided she doesn't need any further therapy, YEAH! They were very surprised at how well she was doing and said she is right back on track for her age. We did get a few different things to work on at home to help build strength. We are hoping to start Molly doing gymnastics for the summer, which will really help with a lot of those different exercises.

Molly's next doctors appointment is next Thursday with her Neurosurgeon. We are getting anxious for this one, and ready to see what he has to say. We have also been noticing that Molly is getting very tired again the past couple days, and looking very worn down. Hopefully this is normal and part of the healing process, they said it takes 3 months, but we will be checking this out next Thursday.

Thanks for continuing to think of and pray for our Molly. We are SO grateful for each one of you.

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.