Update on January 24, 2014

Well, Daughter of Purpose has been moved to a regular recovery room…no longer in PICU. This room is quieter and we have our own bathroom. The nurses don’t check in as often so the pace is a bit slower, which is nice.

Two days ago, DOP started physical therapy, occupational therapy and speech therapy. The therapists come to her room, so that is nice. Here is an update on where she is….

Speech

After only two days of ST, the therapist decided she didn’t need any more. This sounds a bit odd based on our last prayer request of her not speaking much, but it actually makes sense. The problem is not in DOP forming or saying her words. She can speak and pronounce most words correctly. The problem is that she just….doesn’t.

For those who know DOP….this….is….odd.

This girl used to talk so much we would have to discipline her at the dinner table. After a half hour of eating she would still have a full plate of food because she talked the whole time. So, you can see why this concerns us just a little.

According to both Neurologists who have been working with us, this is very common among brain surgery patients. They just don’t talk. And this can last up to a couple weeks. In the meantime, she has been prescribed a low dose of medicine that has shown to help expedite this issue in past studies.

We’ll keep you updated on this.

Physical and Occupational Therapy

This is where she will have some work ahead of her. During the surgery, they went into the head through the back of the upper neck. They pretty much just cut right through all the big neck muscles that hold up and turn your head. DOP still has a lot of pain when her head turns, but it seems to decrease every day. She can very slowly turn her head side to side, but she cringes in the process.

The PT and OT specialists work together at the same time which is nice because the games she plays with the OT to help with fine motor skills helps distract her from the more painful movements in her neck. With help, DOP can sit up on the side of the bed, but she gets tired very quickly. We still have to carry her to the bathroom, but she is at a point where she can at least sit on the toilet for a few minutes by herself. She shows improvements daily, but I’m not convinced walking will come anytime soon. I, however, have been getting quite buff from picking her up several times a day. And I need to go to the chiropractor.

Her fine motor skills with her arms, hands and fingers need a lot of work but she was able to eat a piece of pizza today by herself.

I suppose there is more in her movement than I give credit for. Tonight she was trying to pick her nose because the dry hospital air was bothering her. As a result, she got a bloody nose and it got all over! She’s such a trooper…she just laughed as the nurse and I cleaned her up.

Please continue to pray that her strength returns and her motor skills improve. Pray that her neck pain reduces and her neck muscles get stronger.

Eyes

Many friends have been asking about DOP’s eyes. She is still seeing double, but the shaky movements you see when you look at her seem to be much less than a week ago. She’s frustrated at this….since it is what brought her in here in the first place.

Please continue to pray that her eyes will get stronger and she will eventually only see one good image.

Rehab

The hospital has a very good onsite rehabilitation center. There is limited availability and certain qualifications must be met prior to being admitted. DOP had a consult with the doctor who runs it. Turns out, we knew her! (More on that in a bit.)

We found out that she meets all of the qualifications and that insurance has approved it. Originally, we were told this part of the hospital does not do admissions on the weekends, but that seems to be changing since the nurse told me we might move in on Sunday. Then it changed to Saturday.

Scheduling with this place is crazy….nothing, nothing matches anyone’s schedule. But DOP is getting great care so we don’t mind just going with the flow.

Everybody we talk to in the hospital says that the Rehab is the…place…to…be! So here’s to hoping our hopes are not let down! Apparently the rooms are much nicer, DOP can wear whatever clothes she wants from home and there is a kitchen we can use. She’ll do therapy several hours a day…so here’s to hoping I can get more school and work done too!

This image was taken several days ago, but she looks great in her homemade gown from “Auntie Mo!”

Adaptive Sports

So….a bit of history for those who do not know DOP real well.

DOP had Polio as a baby when in Russia. As a result, her legs are weak. She can walk, but she requires braces and she has a funny little limp to her gate. She’ll never be an Olympic runner and has difficulty with many sports.

Stairs are her worst enemy.

But she can get around just fine. She can swim, get in our very large car by herself, play baseball and various other things. She is just unstable sometimes and a random fall is just part of our normal entrance into every store.

Enter Children’s Hospital’s new Adaptive Sports program which is designed for those who have physical disabilities and their families. We have participated in this a few times in the past. DOP has played sledge hockey on ice. It’s the coolest thing to see a bunch of kids who can’t walk (or have difficulty walking) play ice hockey on these little sleds. They also do water sports, rock climbing and snow skiing. We were planning on going rock climbing with the group two weeks ago….but somebody had to go and get a brain tumor!

Loving the Ice Sledge Hockey!

Some of the people we have met during these outings, happen to be people who work in this hospital and have now worked with DOP. The doctor who runs the Rehab center is the one who helps put on the Adaptive Sports Clinics. She knew who we were before she entered our room. How cool is that?

God has paved the way for many things in this journey of hers….ours….whatever. There are many areas that we see God has made provisions for our family and for DOP’s recovery. We’ve made many new friends who have showed more love and support than we knew we could absorb. Our dearest friends, Randy and Monica have come to our house almost every day to help take care of our other kids, clean the floors and heat up leftovers for lunch. They’re the absolute best and we could never have come this far without them.

So many other friends and family have brought meals every day to both the home and the hospital. The support we have been given is overwhelming. Thanks friends!

But we’re not done yet. Certainly, DOP is no longer in danger (I weep just thinking about it) of the tumor, but please continue to pray for her recovery, her mind, her drive to get well and her strength.

As always, thanks so much for the prayers and support.

Nathan and Brandy

Tuesday Update (January 21, 2014)

Ever since surgery, DOP has had this little tube sticking out of the back of her head. It’s called an Exterior Ventricular Drain, or EVD. It connects to a hanging bag that collects the fluid that builds up over time.

EVD Collection Tube

The funny thing is how this whole EVD thing works. It’s rather simple, really. It’s all based on simple physics…gravity to be specific.

So the nurse hangs with a rope this little collection tube exactly parallel to DOP’s ear canal. When leveled out, this is the Zero Point. If she lowers the collection tube below the ear canal, then gravity kicks in and the fluid drains out of her brain, thereby reducing the pressure in the brain. If the nurse raises the collection tube above the ear canal, then it increases the pressure in the brain because it takes more before it drains into the elevated tube. Raising or lowering be degrees allows the doctors to monitor the pressure and also how much fluid is being produced. This all makes sense…until you see how they level it to the Zero Point.

They use a yard stick ruler with a level bubble.

Really.

All this technology around us…..

We have the ability to reach into someone’s brain and remove a tumor. We can scan their head with touchless MRI technology and see microscopic bits of tissue. The child down the hall has had heart surgery and has a dozen tubes in her body. The nurses can recall any amount of patient data wirelessly from anywhere in the hospital with these cool little portable computers.

But when it comes to leveling a brain drain….we use a level and a rope.

Awesome.

Last night DOP went in for another MRI. This one went fairly quickly and they let me go inside with her again. For all three of her MRI’s she has gone in without sedation. She is such a trooper! I know full grown adults who can’t do that! The reason was so the neurologist can determine how much pressure is building up inside her brain from fluid and to compare this with the EVD readings.

MRI room

MRI thru glass

As of this morning, they were not happy with the results. They’re not bad, but just want the pressure to be less. So they’re waiting another day before removing the EVD from her head. Please pray that the pressure continues to level out to normal. If it doesn’t go down fast enough, they’ll resort to a permanent shunt that will have to be installed under her skin down her neck into her chest.

That would just suck.

So please continue to pray for any swelling and brain fluid drainage, etc.

Lastly, Brandy and I are increasingly concerned about her speech and fine motor skills. Everything in her personality seems to be in place, except for her lack of talking. If you know DOP at all….she’s never been lacking words! We’re not sure whether it’s hard for her to talk, or hurts, or whether there are some residual effects from the surgery. Her hand and arm movements are still very slow and don’t seem to be improving much.

Is this permanent damage? Will her normal movements and speech return after a while? Will she need therapy? These are all still unanswered questions.

Please keep praying for these issues as well.

Thanks so much for everyone’s support and prayer and help.

Nathan and Brandy

Here’s a Saturday update on DOP:

Today was a great day!

Looking good today!

Last night (at 4am) we got moved to a different room in the ICU (for reasons unrelated to us) and got a MUCH larger room just two rooms over from our friends whose daughter is here for cardiac issues. It is quieter and we (that means me at this point) have a lot more room to spread out. This is helpful for me to work on my school and to sleep better since I’m staying with DOP each night.

Here is some updates on where she is at with her recovery this far….

Movement

DOP has full movements of her face…eyes, eyebrows, lips, cheeks, smile. Everything! She can move her hands and arms and feet and legs, but is still very week. I just love her smile!

Today, she was able to sit up in her bed…kind of like being in a chair. She has been able to rotate her neck back and forth…albeit….VERY slowly. Bit still! This was a major improvement today.

The nurses removed her catheter this morning in an attempt to motivate her to move more. One time this seemed to work….another, well, not so much. We’ll see how this goes over the coming days.

Her eyes are not lining up correctly. One day they look fine, then the next the left is delayed, then the right. The surgeon thinks this will clear up over time and doesn’t seem to be too concerned. In the meantime, I’ve put a patch over one eye so that she doesn’t have to strain to see clearly.

Eating

Over the last couple days, she has taken in a bit of liquids via straw and me holding a cup. But she hasn’t had any solid food since last Sunday….the day before surgery. Yesterday, I got her to eat two small French fries and Brandy got her a Jamba Juice that she drank quite a bit from.

Today….tons! She had several bites of bacon for breakfast, several bites of cheesequesadilla for lunch and tonight she had a few bites of meat and cheese from In-N-Out Burger. Of course, we knew she would eat that! This was all on top of lots of fluids she drank all day long.

Talking

Since surgery, she has only been mumbling responses a majority of the time. However, we know she has been able to talk because when she desperately wants something, she’ll say it. And say it clearly. This morning I told her very plainly that nobody was going to respond to her mumbling or whining unless she used real words that people could hear and understand. She didn’t like that, but she attempted to comply most of the day.

Thinking

DOP is still the same girl! The day after surgery she was whimpering and trying to communicate with two nurses who were taking care of her. They were confused, so I leaned over and asked what she was saying. She kept saying her name. I asked the nurse if she said her name the way it is written phonetically and she said yes. We pronounce her name slightly different that it is spelled and she loves to correct people that “say it wrong.” So, there she was….DOP telling off these nurses on how to pronounce her name!

Yep….that’s my daughter!

Last night she watched a full length movie and seemed to be able to focus on it much of the time. I was impressed since prior to that she seemed to have the attention span of a knat. After the movie she wasn’t tired yet, so I wondered if she could concentrate on a game. So we played a game of Crazy 8’s. She honestly won! She wasn’t able to hold the cards up well, but she knew exactly what she was doing and beat me. But that wore her out!

Today she played with a couple games with me and Brandy, watched a movie, played with some stuff animals and various other things. Today was the greatest day so far! Proud of her!

Prognosis

If you weren’t able to follow our FB posts, here is the current long term prognosis.

The tumor was a low Grade 1 benign tumor, slow growing, and most likely been there for a long time. Possibly several years. There is a slight bit still left behind just as the surgeon thought. As she was scraping it away, she got very close to the cerebellum and if she kept scraping, would cause significant damage that could never be repaired. As a result, there is a tiny thin slice showing up in the post-surgery MRI. But due to the type and slow growth of the tumor, the immediate decision is to just leave it alone and see what happens.

No Chemo! No Radiation! No additional surgery!

As the surgeon puts it, there is nothing wrong with leaving it there as long as it doesn’t grow. So we just monitor with an MRI every three months and see what happens.

It could go away on its own.

It could sit there and do nothing.

Or…it could grow in the future.

But until it does something…we do not do anything. And if it does grow, we’ll decide THEN how best to tackle it based on its rate of growth and the circumstances at that time.

We were just happy with no Chemo.

Prayer

Please keep praying for DOP. She still has a long way to go. Pray for her strength and fine motor skills.

Pray for continued healing of her head, neck and brain.

Pray for continued eating and her eyes to get better. We can tell that she is bothered by her eyes not working well. Remember, she came in here because of seeing double. So we kinda think she’s angry that it hasn’t cleared up after the surgery…..eh. Not sure what to say about this to her…..

Thank you, thank you, thank you to everyone who has prayed for DOP and brought us meals and supplies. You all mean the world to us and to our Daughter of Purpose.

So where was I? Oh, right. DOP has a brain tumor. Awesome {insert sarcasm}.

Friday morning we met with one of the two neurosurgeons. She was great and answered all of our questions. In no particular order, here is what we learned.

They won’t know for sure what kind of tumor it is until surgery (which is right now as I type this). They don’t know how long it’s been there, although her gut feeling was that it has been there for quite some time….possibly several years. There was very little pressure being put on the brain which is why she only had very minimal symptoms. Also, because of the low pressure on the surrounding brain tissue, this might indicate that the tumor has grown along with the brain as she has grown. In essence, the brain has adapted to the tumor as it has grown in size, thus minimizing the pressure until only recently. But again, this is only educated speculation.

We will not know about future chemo or radiation until after the surgery. The surgeons will need to see how difficult it is to get out, whether there are any fragments left after surgery, and so on.

We won’t know till after surgery if it is malignant or benign, what type of cancer it is, etc. Again, just more waiting for these answers.

As far as brain surgery goes, this is “a routine procedure.” Really? Routine? Whatever.

We need to plan on two to four weeks post-operation for her to be here…possible much more time if there are other complications.

There are obvious complications that we can expect to see. Loss of motor skills in the face, arms, hands, etc. Slurred speech and droopy eyes. Death. Other things that I stopped paying attention to.

Sigh.

It is here that I must remember that DOP loves Jesus. She loves our God and believes in Him with all her heart, mind and soul.

Friday and Saturday we didn’t do much. DOP got to walk around the PICU and say hello to all the doctors and nurses. They started her on an IV drug that is supposed to help reduce some of the swelling and remove water from the areas around the brain. This should help during the operation. In the meantime, DOP wore an eye patch just to help with the double vision.

The meds worked. By Sunday, she wasn’t seeing double when she looked straight ahead. Yeah!

Over the course of the last few days, the surgeons and doctors kept checking in to see if we had any questions and to see how DOP was doing. I kept saying, “She’s fine, let’s go home!”

They never believed me.

Last night, DOP wanted to go on a walk again before she went to bed. So she filled up the squirt gun that one of the doctors gave her earlier and she walked through the halls squirting all the nurses and doctors. She loved it! She had such a great big smile and laughed the whole time. I loved it too.

I have a brain tumor. Can’t you tell?

“Hi, my name is Nathan. Nice to meet you. I’m the father of the cute little girl with the brain tumor that’s walking around shooting everyone with a squirt gun at eleven o’clock at night. Yeah, she has a brain tumor. Can’t you tell?”

One of the nurses decided to fight back, grabbed her own super soaker and ran after DOP! It was a great time for her before the big day.

Squirt gun revenge!

So here we are….

My daughter has a brain tumor, is in surgery right now.

And all I can think about is that great big smile.

Many have asked how DOP got to this point of having a brain tumor. How long has she had it? How did we discover it? And what do the doctors say?

Well, I can’t sleep the night before she goes in to have it removed….so here you go.

Four to six weeks ago, DOP started getting headaches in the back of her head. They weren’t too severe. They came and went. Simple aspirin helped. It never seemed like a big deal. It did go on for a couple of weeks, but again, it was off and on. We really didn’t think much of it.

Then they went away.

On January 1^st of this year, she complained of seeing double. This was a little disconcerting because she just had an eye exam in October and everyone was fine….20/20. She’s never had a problem with her eyes before. The next day, it was still there and she was watching TV with only one eye. As a parent of a nine-year old that loves attention, you’re never really sure when to believe that something is wrong unless there is obvious blood, puke or a child is simply missing. The one-eye-in-front-of-the-tv bit moved to one-eye-all-the-time. Brandy become more concerned and, admittedly, I figured she was seeking some attention.

Then the ear started rumbling.

On Saturday the 4^th, DOP complained that her right ear rumbled like a volcano. She did have a mild cold and she said that the rumbling got louder when she blew her nose. I figured it was a sinus issue, but I too, thought something wasn’t right at this point. Brandy scheduled an appointment with DOP’s pediatrician for Monday afternoon. The doctor ran the normal tests right there in the room, and she passed everything. Yet, her complaints (and our observations) didn’t line up with his assessments. So just to be safe, he ordered an MRI for her. He figured the hospital would call within a week and we would get an appointment within a week or two of that day.

Less than two days later (Wednesday) we got a phone call with an opening for Thursday. We’re not sure if this was simply providence or if the doctor actual called and had it expedited. Regardless, we’re thankful for the quick turnaround!

Thursday came and I promised DOP that if she laid in the MRI tube real still for the whole 30-45 minutes, that I would buy her a donut. She was up to the task! The staff in the radiology department let me go inside with her and sit and watch right outside the tube. It was very cool and we both appreciated their willingness to let me sit with her. After about a half hour, the technician came inside the room and said the doctor asked for additional scans of her spine.

This is when I first knew something was not right. Um, why would you be on the phone with the doctor already? And, why do you need to scan her neck and spine also? I didn’t verbalize these questions, but I knew something was up.

The next set was going to take as long as the first, so they let DOP get off the table and use the restroom and get some water. As she was headed back into the room, the radiologist pulled me aside and said he needed to show me some pictures. Here it comes, I thought.

As DOP laid back on the table and began the second set of scans, I sat in the control room and was shown picture after picture of the 2” by 3” mass that lay in the back of her beautiful little head.

Brain tumor. The light grey oval mass right in the middle of her head.

Brain tumor.

Seriously? What the heck? How does that happen?

A brain tumor? In DOP? We came in for double vision. How did we jump to brain tumor?

Big sigh, Nathan. Big, big sigh.

After a moment, I called Brandy and broke the news. “You need to come down here. Now. Our daughter has a brain tumor. She’s not leaving the hospital.”

Brandy made arrangements for our other kids and headed over. After walking up to ICU from Radiology (all the nurses were ready to receive this new patient with a brain tumor and were surprised she just walked right in!), I sat DOP down on her bed and explained the situation. She just smiled and said she would be okay.

Well, SHE might be okay….but me? I’m about to lose it completely!

While Brandy was on her way to the hospital, she received a call from the original pediatrician that ordered the MRI. He was already aware of everything and as he talked to her, he began to cry. It was a very welcome gesture for him to call and see if we were okay.

While waiting for the ICU doctors to come and explain what was going on, DOP just wanted her donut. Typical.

I stayed the night with DOP while Brandy took care of the home front. It was a little surreal at first. I mean…she looked fine! Aside from her seeing double (which didn’t seem so problematic anymore), she looked great! She walked into ICU on her own and smiled at people as she went.

She has a brain tumor?

Light grey circle in the middle of her brain. About 2″ wide.

Yep. My daughter has a brain tumor the size and shape of a kiwi fruit.

It was one of the longest nights of my life.

Part two in a bit….