brain tumor 16 results

10 Reasons Why You Should Have Brain Surgery

It seems only appropriate to share our personal 10 Reasons Why You Should Have Brain Surgery just days after the second surgery. We came up with these about a year after Haley's first surgery. Brain surgery is terrible, the recovery is terrible and very very long. We were finally out of the really yucky stuff we were dealing with and were able to find some humor in our journey.  10 Reasons Why You Should Have Brain Surgery You can start comparing things with brain surgery, "Compared to ...

Kids Songs: Color Songs

My two oldest kids had the same Kindergarten teacher whom we absolutely loved. I remembered they learned how to spell their color words by singing fun color songs. I'm wondering if I teach Haley how to spell her colors through fun kids songs if that will help her word retrieval issues. Whenever I use movement or one of her senses to learn or relearn something it helps when she needs to retrieve that word. This confirms what I have been learning about the brain. The more ways I can help her ...

Why I Support The Tyler Robinson Foundation

I first found out about the Tyler Robinson Foundation a couple weeks ago while preparing for the Build Your Blog Conference. Since then it has been on my mind a lot. The TRF is about pediatric cancer. As I was talking to some representatives of TRF I shared a little about Haley's story, they then called me a cancer mom. The funny thing is that is a title I obviously never wanted but also never connected with myself until then. I love that the TRF helps pediatric cancer families in big ...

Haley’s 5 Week Update

I realized in the last update I did not include a key piece of the puzzle. We finally received the pathology report! It took so long because the two pathologists here did not come to the same conclusion. That meant the samples were sent to Massachusetts for a second opinion. After all that they believe the tumor is 99% benign and 1% fast growing. Pretty good odds...but I still think about that 1% every now and then. The name of the type of tumor is only a few years old. We discovered from ...

Haley’s Update

Just over one month ago we found out our 2 year old had a very substantial brain tumor. Since then we have been through a crazy journey. Surgery was just over 3 weeks ago and I feel like it has been almost constant crying, screaming, and little sleep. Between figuring out Haley's pain tolerance, post surgery issues, 3 older sisters with school and sports schedules, play dates, piano, a 4 month old and Jeremy interviewing for a new job, each day has been intense and rough. Luckily Jeremy's ...

One week later.

What a month we have had! In fact it hasn't even been a month since we realized something was seriously wrong with Haley. One month ago we were waiting for test results from the EEG, the beginning of this journey. At one moment it seems like these last weeks have flown by because we have been so wrapped up in it, but a moment later it seems to have gone by so slowly because of all the waiting and wondering and sitting through days and nights of listening to Haley cry. The moment I realized ...

Day 7 post-op, Tuesday

Today was a cheese day. Before the surgery she would choose to have a cheese stick and then only take one or two bites. Today she ate 4 cheese sticks in a row before I could convince her to choose something else. She ate 3 more at other times of the day. Strange. Sometimes she looks at food in wonder. It appears that she doesn't know what it is even though she has eaten that food previously. She is afraid to taste it and then does, likes it and wants more. I wonder if this is why she has ...

Surgery Day!

Today was the big surgery day. We started the day out with Little Chef C waking me up just after 4am to tell me it was after 4. I told her I was waking up at 4:30 and would get her up at 5:00 so she could go lay back down in her bed. When I finally woke the girls, one said she was tired but the others woke quickly super excited about their day. We dropped off kids to fly on an airplane and have a great few days at Disneyland. They saw their cousins and didn't even turn around to say ...

The day before surgery.

I've been packing and packing. The older girls are going with my SIL and BIL to Disneyland! There is no better place for them to go to keep their minds off their little sister. Yes, we are trying to shelter them from most of the events this week. We do not find it necessary for them to see her at her most awful state in the hospital. They might see pictures later (if we take them), but it won't be terrible because they will know she is fine. We are thankful plans worked out that our girls are ...

It’s all in the details.

In the process of finding out what was wrong with Haley I was frustrated with the communication channel to obtain test results. Looking back that poor communication was a blessing. Supposing results were reported to me immediately and the next test performed we would have found out about Haley's brain tumor a week earlier (or so). I would have taken her by myself to the MRI with the baby because I would have been on my own. That would have been horrible only because I now know she does not ...

How are the other girls?

I have been asked how the older girls are doing and how much do they know and understand. On Saturday, the day after we found out, we explained in very simple terms to all three what was going to happen in the near future. Later that day I was with just the 2 older girls and told them more, still leaving out the really scary details. My oldest was making frightening faces as I was explaining. I didn't think she was going to be ok. She is my super sensitive, emotionally tender child. But, she ...

Our first Neurosurgeon appointment.

Haley was released from the Outpatient Clinic. We were on our way home to pick up everyone and go to the other hospital when my mom called. She started out with, "What do you know and what do you want to know?" I said I didn't know a lot. She kept saying it is benign, it is benign. That was the best news of the day. She reminded me she used to work with some Doctors, nurses and staff members in Neurosurgery. That was comforting. After dropping off kids and making sure the other girls were ...

The first of many MRI’s.

Plans worked out that I was able to take Haley to her MRI alone. If the baby became hungry before we returned Jeremy would give him a bottle. If that didn't go well they would meet me at the hospital to feed him. At this point we were happy the hospital was only 10 minutes away. We checked in, went to a small room where the nurses did their regular check up and took some history. Then they had Haley sit facing me on my lap and holding her arm a particular way so they could put an IV in her ...

Doctors visits began.

We had the appointments scheduled for the two specialists so we were just waiting but not necessarily worried. One night we were watching the news when they talked about someone going in for brain surgery to remove a tumor. I remember thinking she is going to have a brain tumor, but then thought I was just being crazy. I took her in for her Neurology appointment. We first saw the PA who was doing some motor tests with Haley. He said, "touch my finger, touch your nose, touch my finger, touch ...

How the brain tumor discovery began.

We went on vacation in March when the kids were off track.  The first morning on the road Haley had cereal for breakfast, nothing out of the ordinary. Immediately after finishing she threw up. I really do mean immediately. She swallowed that last bite and up it came. She asked to be held, which was uncommon because she is a mover and a shaker. She fell asleep immediately in my arms. Again, it was within 30 seconds! It was not even 8 am and she was already taking a nap! How strange is that?!...

Here comes a big change!

This past week my family has been through quite an ordeal. We went from discovering our Little Chef H, Haley, was having seizures to discovering just a few days later that she has a very large brain tumor and surgery is within 7-10 days. She is a very unique case because she is 2, the tumor is large and the type of tumor is difficult to remove. My focus at this moment needs to be primarily on her needs. If we need a distraction we might post something here and there. (We were really looking ...