Mikey update

Mike continues to make improvements during his therapy sessions. Today he used his removable cast for a good part of the day but become very frustrated during meals while trying to eat using just his left hand. He does not have much control or strength in that hand, so eating was a challange. I am sure that he will continue to improve, but it can be tough to see him struggle with something that was once so easy.

Yesterday Mike developed a twitch in his left hand. He had the same twitch right after his surgery, but it went away after a day or so. Well now it is back. I think it is because they have weened him off the steroid he was taking, but tomorrow he is going to get an EEG to rule out any type of seizure. Probably a wasted test, but I remember thinking the same thing before his first MRI. Better to have it checked out. It doesn't bother him at all and will most likely go away as his neck and spinal cord heal.

Please continue to pray for Mikey to have the patience to put up with all the stuff his therapists have him do. They are working him hard, but they have produced some incredible result in the other kids that are here.

Mikey getting a cast

Today in therapy Mikey had his right arm put into a cast. His right arm is his strong, good arm and by casting it, that will force Mike to use his left hand and arm. Making him use it more will help it to heal faster. He has taken all this in stride.

Once the cast was set and hard, they will cut it off and attached straps to it. This will allow us to remove the cast when he showers and sleeps, but whenever he is awake he must have it on.

Mikey thinks / wants to take the cast off to eat. He says he needs to since he can't use his left hand very well. I said, backed up by the staff, that he will either learn to use his left hand, or he will get skinnier. :)

Pathology is in!

Just got off the phone with Mike's oncologist, and the news was good! Mike has a low grade tumor called a Ganglio Glioma and his prognosis is very good. He may not even require any additional treatment other than MRI's evey three months. The final determination on his treatments will be made next week when the tumor board meets. It is still possible that the board will recommend radiation treatment as a preventative measure, but they may just want to watch him very closely over the years.

We are all very relieved to finally has a name for this tumor. Now Mike needs to concentrate on his rehab so we can hopefully put this behind us. He continues to make progress everyday and he is working very hard with his therapists.

We want to thank everyone for their prayers through this ordeal.

Mikey was moved today

Mikey was moved today from Children's Medical Center to the rehab hospital, Our Children's House (OCH) at Baylor. It is in downtown Dallas and is dedicated to helping children rehab from all sorts of things. He was moved today around noon, and got his second ride in an ambulance. He thought it was cool and now Mom and I have each gotten to a ride with him in an ambulance.

He continues to work hard with his therapists and is making progress every day. When I think back to how he was just a week ago, I am truly amazed at what he is able to do, especially when you consider how much of his cord was compromised by the tumor. I am not sure how long he will be at OCR, but there will be a care meeting with his team on Friday, and should know more then.

We are still waiting on the pathology report. If anyone is looking for a field to go into, I would like to recommend pathology. They apparently could use some more help, since it takes so long to get a report back from them. The tumor board at Children's is meeting tomorrow morning and I think they will know more then. The pathologist will be attending the meeting as will all of the other doctors that are art of the team. They all sit down face to face and it allows the guy who actually saw the tumor and took it out to talk with the guy looking at it under the microscope. I am expecting to get some more information in the afternoon.

More updates as information becomes available.

Thanks for everyone's thoughts and prayers, please keep 'em coming.

Just hanging in the hospital

It's Saturday afternoon and we are watching the Rangers play the Angels on TV. Mikey has been busy to past few days with physical and occupational therapy. Yesterday he went for his first walk which was about 50 feet in the hallway. Today we went for a few walks. One around the floor with the therapist and then later down to the fourth floor to the Aikman Endzone. That is a fun place to go play games and do different activities.

He was pooped when we got him back to the room. Then the occupational therapist came by and we played Connect Four and some other task to work on his fine motor skills in his left hand. He will need to continue working on his left hand and leg strength and coordination.

His surgeon also came by today and said he is making good progress. He will probably be transfered to the rehab facility sometime next week. Most likely Tuesday or Wednesday. He also said that Mike will have another MRI in about 6 weeks once the edema in his neck has gone down. I asked him how much of the tumor he removed and his estimate was that he got about 90% of it. Got to be happy with that!

Still no word on the pathology report. I'm guessing we will see those middle of next week.

Mikey is out of the ICU

Mikey had a busy day today. This morning he was visited by his doctors who continue to be pleased with his progress. He is still experiencing left side weakness, but it is getting better. Yesterday he had an MRI and they wanted to check swelling in the area of his surgery. It was what they were expecting to see, so that was good. The swelling did not allow a good view of any possible remaing tumor, so I think they will do another MRI in a few days.

The ladies from physical therapy came by and got Mike up out of his bed and sitting in a chair for 90 minutes today. That was a big step for him today (no pun intended)and I think they are planning on having him try and walk a few steps tomorrow. Soon we will be doing laps around the ninth floor.

Later in the afternoon he was moved from ICU to his normal room that he will ne in for the rest of his stay. We are very happy to be out of the ICU. Great folks, but they don't let Mom and Dad have anything to eat or drink in the room, and I need my coffee.

Now let's blog about pathology. During surgery the tumor was sent to the lab to determin what kind it is. We have not heard the results of that yet and we are patiently waiting. If the results arn't back by Friday, I don't expect to hear anything til next week. As we found out last time through this, pathologists don't work weekends. Once we get the report back, then the couse of treatment will be determined. Right now we just have to wait.

All in all, I am extremely happy with how things have been going so far. Still have several hurddles to overcome, but one of the biggest is out of the way. Thanks again to everyone for your thoughts and prayers and please keep them coming.

Quick update on Mike

This will just be a quick update. Mikey is still resting in the ICU.
His doctors came by this morning and are happy with his progress so
far. Not much has changed since last night.

They have scheduled him for a MRI this afternoon. Pending the results
of the MRI he may get to go to his regular room tonight.

Resting tonight

It is almost midnight here in Texas and I am finally grabbing a bite to eat in the hospital cafeteria. Mikey did very well in surgery and recovery. He woke up very thirsty and had several apple juices before we saw him. He is now resting in the ICU tonight and will probably go to a regular room tomorrow afternoon.

Mikey appears to have come through the operation in pretty good shape. He is able to move his arms and legs, which is a good sign.  He is experiencing weakness with his left arm and leg, but that was to be expected.  We are happy that he is able to move them right now. It will still be a couple of days before we have a better idea how is doing neurologically, but it is looking pretty good right now.

Just spoke with the surgeon

We just finished speaking with the neurosurgeon that operated on Mikey. He was very happy with how things worked out today. He was able to remove everything that he could visually see, and even went back in to get a bit more they found on ultrasound towards the end. He said the tumor had taken up about 90% of the available space inside Mike's spinal cord, and he had to have a small piece of bone removed for them to have access.

Mikey is still in the OR right now with anesthesia, but should be moving to recovery fairly soon. He will spend tonight in the ICU. Our next hurdle is to see how he did neurologically. We should know more about that as he wakes up, and over the next few days.

Thanks to everyone that was praying for us today. Please keep them coming so that he comes through this without any neurological problems. Anytime they operate in an area as sensitive as the spinal cord that is a risk that you take.

We are hoping to see Mikey in recovery in the next hour or so. I will post more information when we get it.

It's been a long day, but we are very happy with what we have heard so far.

Still in surgery

Just a quick update...

As of 4:00 CDT, Mikey is still in surgery. The procedure was originally scheduled for 4 hours, but the surgeon said this morning that if it took longer it would be better, so this must be good news. He has been in for 8 hours and counting. We have been getting hourly updates from the nurses in the room with Mikey, and things seem to be going well. They have gotten to the tumor and have been slowly removing it.

They are saying it could still go for another couple of hours.

Mikey is in surgery

It is now 9:00 AM here is Dallas. Mikey was rolled into the operating room just over an hour ago. He was a bit scared, but doing very well. The surgeon said this will take about 4 hours, but could go longer depending on what they find and how they are doing. The are several risks associated with trying to get a tumor out of his spinal cord, so they are taking their time will working on Mike. I am good with that! It will be later this afternoon before we will have any real update. The nurse will give us some news every hour or so during the operation, but it will be later this afternoon before we know more.

As always thanks for keeping us in your thoughts and prayers.

Shelby has her drivers permit! YIKES!

Shelby now has her permit and is already bugging me on a regular basis to go driving. Now it should be noted that in Texas, you get your permit before you ever sit behind the wheel and drive. State law says the kids need their permit to drive on TX roads, even with an instructor. Shelby has had a grand total of one lesson with and instructor and now thinks she is ready to help with all our driving. She even went so far the other night to suggest that I have some adult beverages at dinner, then she could drive home. It would obviously be safer to have her drive home than for me to drive after drinking. I told her that I appreciated the offer, but that I could refrain from those type of beverages just this once.

I did take her out on the roads and to her high school parking lot the other night, and I must admit, that for a first time driver she is doing well. She still has a long way to go, but there is hope.

Rangers game last night

Last night Mike and I went the the Texas Rangers game to see the Detroit Tigers get their butts kicked for the second night in a row. We went with Mike's friend Carter and his dad Scott. Other than the outcome of the game, we had a good time. I was able to get great tickets 11 rows from the field by the Tigers dugout. Mikey got to meet the Rangers mascot, Captain, during the game. He came down to say "Howdy" to Mike and had a bag of goodies for him to take home. Mike was very surprised and couldn't figure out how Captain knew about him.


After the game we stuck around for a bit and got a couple of autographs of pitchers coming our of the bullpen.

Legally Blonde the musical

On Sunday we all went out to see the musical version of Wendy's favorite movie, Legally Blonde. Wendy and Shelby were hooked on the reality show last year that followed a bunch of girls trying to get the lead role in the play. Turns out 2 of the girls from the TV show had supporting roles in the play we saw, so that was kinda cool to 'see where are they now'.

The play started a bit slow and I was not to impressed with the first 2 numbers, but once they got going and warmed up, it was much better.

Everyone had a good time and it was good to get out and have a bit of fun.

Mikey Update

Well...quit a bit has transpired since my last post so let me take a minute to get everyone caught up to date on what is going on with Mikey.

June 30: Mikey was discharged from the hospital and we took him to his Grandma's to rest for a few days before we travel back to Dallas.

July 6: Mikey, Wendy and Grandma get to fly to Dallas on a corporate aircraft thanks to Corporate Angel Network. They coordinate the use of company planes that have been made available to transport cancer patients. He really had a blast traveling in style. I however, got to drive back with Shelby and our dog Piper.

July 7: First meeting with the oncologist in Dallas. He reviews MRI images and all notes and reports from the hospital in Detroit. He takes Mikey's case before the tumor board for review.

July 9: Tumor board has meet and they are recommending a second MRI and second surgery. The second surgery is to be more aggressive in getting the tumor out. Their recommendations are in line with the findings of the tumor board in Detroit as well.

July 10: Big scare tonight! I was at work, when I get a text message from Wendy saying that Mikey had to have his first ambulance ride to the hospital. His pain became so severe that he was just about incapacitated, so the paramedics were called, an IV with morphine was stated and he was transported. Spent a few hours in the ER, pain got better and he was put on a steroid to help with swelling around the tumor, which helps a bunch with the pain.

July 13: Second MRI of the entire spine this time. Mikey does very well during the MRI. Poor guy had to lie there for 2 hours while they performed the various scans. He has to get another IV for the contrast to be injected, but we discover a great little tool that numbs the injection site by using compressed air to blow the numbing agent under the skin with no injection. Mike felt nothing at all during this procedure, so it is our new best friend when it comes to starting IV's.

After the MRI we meet with the pediatric neurosurgeon. He reviews the new MRI images and discusses the 2 options the tumor board came up with. 1) No surgery and just treat with radiation. 2)Surgery to remove most, if not all, of the tumor, followed by radiation if needed. He tells us that nobody on the tumor board thinks Option 1 is a good idea. So...surgery is scheduled for Aug 4.

Mike's medication are changed a bit and adjusted to manage his pain until we get to the surgery date.

So there it is...We are up to date...More updates to follow...

My First Post

I've been threatening to start a blog for months now. Always had some reason to not do it. Who would want to hear about what I had to say on any given day. Well today is no ordinary day, for me or my family. As I hack out my first blog, I am sitting in the ICU of Children's Hospital in Detroit, at 1:17AM, watching my 12 year old resting after he had surgery.

Mikey turned 12 one hour and seventeen minutes ago. What a way to spend your 12th birthday! It turns out he has cancer and the tumor is on his cervical spine located between C3 and C4. But lets go back a bit so you know how we got here.

Mike had been complaining about neck pain at night for a few weeks. Up until this week, some Motrin and Bio-Freeze seemed to do the trick. But things got worse this week. This week when he got up he was in extreme pain. Bring him to his knees kind of pain, and there was nothing I could do about it. The episodes would last an hour or so, then begin to trail off and he would go back to sleep.

It just so happened, that this week is also the week we chose to go on vacation from our new home in Texas, back to our old home in Michigan to visit friends and family. Three nights ago, Mikey spent the night at one of his friends house, whose Mom just happens to be a Pediatrician. He had another attack, with a Doc there to experience it first hand. The next morning she was able to get him in to see a Ortho Doc. After an examination, they agreed that Mikey should get an MRI to see what was going on. This was on a Wednesday and the MRI was scheduled for Thursday. It was as a result of the MRI that the tumor was discovered. We ended up that night in the ER of Children's Hospital in Detroit, where he was admitted. Surgery took place on Friday afternoon, the day before Mike's 12th birthday.