Settled In For the Night

Justin returned with a band aid on his head. He's eating ice chips and taking some pretty good meds for pain. He chose not to take the strongest, but went one that is less strong. It is one of the only times he has ever asked for any medicine--even Tylenol--so I knew he was hurting some. His comment was, "my brain hurts," but said his pain level is a 4 out of 10. He is hoarse from the breathing tube but seems to be in pretty good spirits. One of the neurology student doctors just came in and said he is doing well.

Biopsy Details

Justin's biopsy was done with the newest state-of-the-art instruments. They placed little discs on Justin's head that were like little dime-sized GPS units. The surgeon didn't have to measure and place Justin in a certain position because the little discs would be the guide. Using the results of the 2 MRIs and the "global positioning", the surgeon made a little nick in the scalp, drilled a tiny little hole in Justin's skull, and guided the probe down to the precise location that they needed, less than an inch and a half deep. The probe is about the size of the inside part of an ink pen (the part that holds the ink). It has a hole in the side of it. Once the probe is exactly in the right place, a little suction pulls some cells into the probe and that is all there is to it. The cells go to the pathologist, the brain closes in on the hole, and there is a stitch put in the scalp if necessary. We were astonished at this quick and precise procedure. Five minutes with a highly specialized surgical team and equipment worth millions. Simply amazing.

Preliminary Results

The neurosurgeon came in a few minutes ago to give us a report. He said it went as expected, and all preliminary results are that it is an low-grade glioma. Justin is still in recovery, but should be back to his room within an hour. The whole family was thrilled with how open and friendly the doctor was. While he was explaining things, his pager went off and it was the staff in the recovery room, saying "all is well." Justin will have a CT scan tonight to make sure that there isn't any bleeding in the brain. He will able to eat now, which will be great because it has been about 24 hours.

Waiting....Again

I walked alongside as Justin was wheeled to the OR. We laughed and joked along the way and he was ready to go in and get this over with. It will be about 7PM before he is back up to his room. The doctor will have some info for us, then more tomorrow. Soon we should find out if he can go home soon and do all this as an outpatient, or if he has to stay awhile.

Next In Line

Justin just got back from another MRI. This one took much thinner images than the last one, which will be better for the doctor. He laughed that he got a good hour of sleep in the MRI! Grandma couldn't figure out how he could sleep with all that noise! He said, "you just get used to it." That is typical for him. He is next in line for the biopsy. All the operating rooms are busy, but when one opens up, he will go down. This time he will be put under a general anesthesia. He appears to be calm, and when the doctor asked if he was nervous, he said, "no, I just want to get it over with it." We should hear some preliminary results sometime this evening, then more final results in 3 or 4 days.

Grandma and Gale are here now, so that helps.

Brain Biopsy

One of the neurosurgeons came in to tell us all about the brain biopsy. It will happen as soon as they can fit him in the schedule. They placed some sensors all around his head that line up his brain on the MRI for the biopsy. They look like little green Life Savers breath mints stuck all over. The surgeon said that he does these biopsies a lot, which is good. He explained the whole thing in depth so we didn't have many questions. Justin is all hooked up to the IV again because of the steroid/blood sugar thing and the no food. His IV ports had "expired" so they had to be redone. This nurse got it in the first time and removed the 2nd one all together. Nice.

Some Good News

The team of doctors came in to let us know that there does not seem to be any connection between the thyroid and the brain tumor. But the best news is that the thyroid is benign. No cancer. That is great news! It is still greatly enlarged and blocking his airway, but they can deal with that as needed. It is not an emergency today. We are still waiting for the hospital to try to fit him in for the biopsy on the tumor. They will go into the brain from the top of his skull, but it will be small. They are trying to fit him in today, but we haven't heard yet.

An Amazing Young Man

Justin has endured so many things in the last few days; IVs that wouldn't go in the first 5 times, shots of all kinds, deep vein blood tests, finger pokes, medicine changes, needle biopsies, blood pressures & meds all through the day and night, packs of doctors and students looking, probing, testing and making rounds at 6:00AM. Throughout this ordeal, Justin has been an example of patience, peace and prayer. As a mom, you hope your children will be able to have the strength and fortitude to get through the trials of life. But to see them walk through something like this without complaint, crabbiness or anger is amazing. I am in awe of my son.

Midnight Surprise

Current mood:helpless

Josh here:

Well at the hospital tonight around 11:45 the nurse came into Justin's room and let him know that he wasn't allowed to eat or drink anything after midnight. Since we're all on edge a little anyway it didn't take long to figure out this was some sort of surgery prep.

You feel bad asking Justin things, or thinking out loud because you don't want to upset him......but jeesh, that's tough.

So anyway, we found out the doctor had called the nurses and told them to put Justin's discharge on hold and put him on npo (which means no food/drink).

Our assumption is that Justin is having a biopsy done on his tumor tomorrow, but we cannot be sure. The biopsies have been done on his thyroid so this surprise could have something to do with that as well.

Needless to say this is a sleepless night for his brothers. Not so much worry, but utter helplessness and a huge desire for this to all go away. Life has changed so much the last few days for all of us, and there isn't one of us here that wouldn't gladly lay down on the table and let this happen to us instead of Justin.

Please pray for Justin for this big day on Wednesday. The thought of anything poking into his brain makes me want to throw up, it's just sickening. I can't sleep, lay still, or even think straight. Jason has told me Justin has been praying all night, as have Jason and I. Thankfully mom is getting some sleep, as are the other girls. Hopefully we can get some rest after the doctor visits early in the morning and we know what's going on.

This is one of those nights that you really wish you could understand what God is doing, and why he has these plans for all of us--especially Justin.

Eye Info

For all of my coworkers and the doctors at Vision Park; I thought I would let you know Justin has the "best" conjunctival hemorrhages I have ever seen...just plain scary. I have pictures, but I'll save them for us--I'm not so sure anyone else would enjoy them!

Talking to the Doctor

This afternoon Justin, Jason and I went to the Radiology Oncologist. He was the one doctor we hadn't seen yet, so we had no idea what to expect. His nurse spoke with us first, then the student doctor, then all three of them. He was great. But the news wasn't so good. He said that the vascular malformation (the vein and vessel cluster) was actually the least of our worries. That was put on the back burner. He showed us the images from the brain scan. It was very clear that the thyroid was too big. Then as he went through the images one by one, we saw the tumor. I thought it would look like a walnut or golf ball with a definite shape and an outline. But what it looked like was a splash of milk on a regular brain. I was shocked that it looked like that, just part of the brain, not it's own identity. The doctor called it a low-grade glioma, which we had heard from some of the other doctors. They don't know yet what we are dealing with between the thyroid and the glioma. Did one cause the other to change, or are they two separate things that have nothing to do with each other? And is the glioma a low-grade, or is it changing? Once the results are in, there will be some meetings between the Oncologist and the Chief neurosurgeon to decide what to do. We are wiped out. This is a roller coaster ride no one wants to ride. I have to keep reminding myself that God knows and cares, and has a plan.

More Tests

This morning Justin had an ultrasound on his thyroid, plus another biopsy on the thyroid, this time in the front (yesterday they took it from the side). When he returned, he was very quiet. I know he is a tough guy and doing well, but I think after this many tests, he is just weary. After a shower to wash off all the junk left over from the EEG and other tests, he will probably feel better. They unhooked him from the heart monitors and took off all of the connectors hooked to his chest. Now he only has an IV line in each hand, which will stay in until he is discharged to go home. He is off the IV meds. This is good news. Now all of the meds he is on are in the pill form and he can get out of bed when he wants to. They are still working on getting his medicine levels correct, but he sure feels a lot more free than even a few hours ago. As I was writing this, the physical therapist came to take him for a walk to see if his coordination is OK. Until now, they have kept him close to his bed to make sure he wasn't having seizures anymore. He's back and got a good report.

Good Things to Know

The doctors here in Iowa City are amazing! They go in a group for rounds every morning from 6-7:00AM. They will give some explanations about what is going on first, then stay so we can ask questions. They gave us some more information on Justin's tumor and things are starting to make more sense now. The tumor is in an area of Justin's brain that controls speech and emotions. Although we haven't seen any problems with his speech, we have seen evidence of the emotional. For several years, Justin has complained of "panic attacks". I have been with him on a few of these occasions and there is nothing going on that shows. It is totally inward. Something in his head has been making him feel panic and anxiety that doesn't seem to have any connection with his life. It is very interesting to put the pieces together. Hopefully he won't have to suffer with this anymore.

Visitors

Jason and Tammy have been so helpful with everything since Saturday. Now Josh and Hannah are here from Atlanta and are also pitching in, too. We don't leave Justin alone much. He is an adult and could handle this fine alone, but why? What a blessing to have big brothers! His dad came up for late Sunday night and left Monday night. Barb and Sherry also came from Des Moines to bring us groceries for the motel room and be an encouragement. My small group sent a gift that will never be forgotten. I am in awe when I watch this love in action. Justin's roommate has not had one single visitor the whole time we have been here! I'm glad that Justin has such a loving support group. We have heard from family and friends from all over the country. Thank you, one and all!

Thyroid

They did a biopsy of Justin's thyroid yesterday and just told us they want to do another one today. We are not sure if this is good or bad, but the doctors didn't seem to be concerned, so we won't be either. They said it was very unusual for a patient to have 3 different independent issues going on at the same time. I think they want to know if one caused the others.

Something Else in the Brain

Neurologists came in to update us on the brain tumor. They had been studying that side of the brain, but saw something on the other side. It is a cluster of veins and vessels that are not right. There is a chance that they could have a "bleed". If Justin was older, they would just take the chance, but since he is only 24, they want to fix it. It is not in a place where they can operate, but the doctors said that radiation will work well. It might take two years but then it's fixed.

Shots, Tests and Pills

They started Justin on a medication to reduce the edema in the brain. It works well, but can cause the patient to be aggressive and have really high blood sugar. Because he is on that, they must now test his blood sugar--it is high--and give him shots of insulin. He is also on a medication to stop the seizures. We don't know how many he had, but it was at least four. Good news is that he has not had anything even resembling a seizure since the ambulance ride on Saturday. They give their patients Prilosec for tummies because most of the patients have nervous, acidy stomachs. I'm not sure what else he takes, but it is a pile. He swallows all of them at once with no trouble.

Human Pincushion

Justin has been the victim of numerous needles. He bears it so well, always strong, always calm and never complaining. His comment about the biopsy today was that it was boring. The nurse asked him later if they used any medication to make it numb and he said no. She asked if it was one poke and he said no, it was three. Three needles in the neck with no meds?!! And it was "boring"? He is so unlike his mom who would have to be peeled off the ceiling by her fingernails.

To Iowa City in an Ambulance

The ambulance arrived too soon, and they wouldn't let me ride along. So they took Justin alone, which was very hard for me--I wanted to be with him so bad. Jason, Tammy and I went to my place to trade cars, grab some stuff and get to Iowa City. It seemed like a long trip; praying, crying, trying to resolve what was going on, taking and making phone calls. It was really hard. We found that the worst part was the unknown. We all felt maybe he wouldn't live, and that was hard. I told God that I didn't want to play tug-of-war with Him. If He wanted Justin, I would not fight, although saying that is much easier than living it.

As soon as we arrived, we were taken right to the ER where the ambulance dropped him off. I noticed right away that his eyes were worse and puffy, his face was darker and redder, and there was blood by his mouth again. It came to me then, and was soon confirmed by the doctors that Justin had been suffering through some seizures, and had one in the ambulance on the way. I got really emotional then. The sore tongue, the rapid heart rate, the panic, the blood. My baby had been really sick and no one even knew...even he didn't know. We questioned each other about the symptoms that he had; when did we begin to see these? Poor guy. My heart just went out to him--knowing something was wrong, but not knowing. The neurosurgeons came in right away to explain to us what they were seeing. They put us at ease right away, "this is what we do, you are in the right place." They wanted an MRI done, but didn't know if they could get the staffing on a Saturday night. Bless her heart, a young gal came in just for Justin, so he had it done in just a few hours of his arrival.

We also had a visit from the head and neck doctors, who put a tiny camera down Justin's nose and took a look at his airway. The doctor said it was not very big and the thyroid was what was making it that way. They ordered a biopsy for Monday morning.

At about 6:45 Sunday morning, the doctors came in--in a group. The results of the MRI were in and they found Justin has one tumor, called a low-grade glioma. It is cancer, but it is very slow growing and not as invasive as some, so there were several options from surgery to doing nothing for now. They were more concerned with the thyroid being so large and making his airway small. The head and neck doctors will know more after the biopsy.With so much more information, we didn't feel such panic.

Something Is Not Right

Saturday morning I woke up to Justin on the living room floor, breathing but not responsive. He was moaning as if in pain and there was a little blood coming out of his nose and mouth. I was scared to death, mainly because I couldn't get him to respond. I wasn't sure what was going on, but I knew it was more than I could handle, so I called 911.

Once the police, firemen and EMTs were in the living room with us, he began to look around and slowly became more aware of himself. They got him to sit up and answer some simple questions. He took a ride to a local hospital, where they began to do a simple battery of tests. As the morning wore on, he became more and more like himself, although he couldn't remember anything from about 1:30AM on, nor why he was at the hospital.

Jason and Tammy were with me, and we began to try to figure out what happened. We recalled that he had been behaving differently for a few weeks; nothing too unusual, but not like Justin. He had complained that he was unable to sleep very well due to a racing heart, and he was having what he called "panic attacks." He also said his tongue was swollen. Jason had convinced Justin to go to the doctor on Friday due to the symptoms, and the doctor found that his thyroid was enlarged. He gave him some beta blocker for the racing heart, did some blood tests and said he would contact him on Monday with the results. Little did any of us know how much we would learn about Justin before then...

Justin was on the gurney in the ER and there were some physical issues that were not good. His face and eyelids appeared swollen and he had little broken capillaries all over his face. The scariest part was that both eyes had hemorrhages in them, so where the whites of his eyes were supposed to be, there was blood instead. I see this at work and knew there are various causes for this, but had never seen a case anywhere near this bad. Somewhere, somehow he was having some pressure issues.

One by one, the test results came back fine. His blood pressure was fine, even a bit low. His blood sugar was normal, thyroid levels were all fine. This doctor couldn't find anything wrong with him. He thought maybe it was a reaction to the beta blocker from the day before, but the symptoms were there before the first doctor prescribed them. Because they couldn't find any problems, they were planning to release Justin! I was shocked. The doctor said they had a certain protocol and that they hadn't found anything, so they had no reason to keep him there. I looked at the doctor and told him that there WAS something wrong. Just looking at Justin's face told me that he had some major problems. The doctor looked sympathetic but didn't have any reason to keep him. I finally reminded him of the enlarged thyroid and he admitted he hadn't actually looked at it yet. As soon as he felt it, he looked surprised at it's size. He said that it was bigger than he thought. He stood there a minute and finally said there were a few more tests he could do. He ordered a CT scan on the thyroid and left. I was relieved that he kept Justin there and told Jason and Tammy that if they had released him, I would have driven him right to another hospital.

Soon the doctor came back and said the thyroid was blocking Justin's airway. He said there was an Internal doctor there that suggested they do another CT scan, this time on his head, to see if there was possible bleeding in his head. As we were waiting, Justin began to sort of "zone out" and look sideways in a weird way. I asked him if he was OK, and he looked at me like he didn't even know me, so I ran for the nurse. The nurse watched him and tried to get his attention, but for a few minutes he was just "out of it." The nurse went right in to the doctor's office. By the time Justin went for the CT scan, he seemed to be OK again.

Very quickly after the 2nd CT scan, the doctor sat down. He took a big breath and said, "well, you have 2 tumors in your head. One is in the frontal lobe, and the other is behind it. We don't have the ability to deal with this here, so we want you to get to Iowa City. Since you had that episode a little while ago, we are going to send you by ambulance. They will be here shortly."

WHAT? Surely he was not speaking to us. He had the wrong room or the wrong person or something. It took me a minute to figure out what he was saying. And even then I had mixed emotions; relief that we were right and there was something wrong, but fear from what that meant.

The doctor left the room and we all looked at each other. We got up and went to Justin's bedside. Jason said, "we have to pray!" And we did.

In a few minutes, I asked Justin what he was thinking. He said, "well, I guess it answers some questions." How true.

Jason bent over Justin's bed and gave him a big hug. Justin said, "I wasn't your's first, I was God's first. Don't be sad." We all just broke down and cried.