September is Childhood Cancer Awarness Month

September is Childhood Cancer Awareness Month and September 12 is Childhood Cancer Awareness Day

Here are some things you can do this month (and ALL YEAR ROUND, for the most part!) to support Childhood Cancer Awareness. None of these things involves any financial burden of any kind (except for eating at Chili's ... but hey, ya gotta eat right??)

• Tell everyone you know (and even those you don't know) how you, or someone you love, has been touched by childhood cancer.
  
  
• Donate blood: givelife.org
  
  
• Dine at Chili’s on September 28, 2009, when they will donate 100% of profits from restaurant sales to St. Jude Children’s Research Hospital: createapepper.com
  
  
• WEAR GOLD FOR THE KIDS: cafepress.com/teamunite
  
  
• Register to become a bone marrow donor: marrow.org
  
  
• Offer to volunteer at a local childhood cancer center.
  
  
• Join Team Unite to become part of a unified voice against childhood cancer: teamunite.net
  
  
• Join People Against Childhood Cancer (PAC2) to learn of efforts being made around the country to find a cure, raise awareness, and lend support: curechildhoodcancer.ning.com
  
  
• Let a family that's been touched by childhood cancer know you STILL CARE and haven't forgotten about their struggles.
  
  
• Let a family of an angel know their child remains in your heart.
  
  
• Sign the CURE CHILDHOOD CANCER petition (and ask your friends and family to sign, as well!): thepetitionsite.com/1/CureChildhoodCancer

Weekly update

Mikey had a very good week at OCH. He continues to do well with his therapy, although he does not like (hates) wearing his cast during the day on his right arm. He is constantly trying to negotiate with me and the therapist about when he has to wear it. When 4:00 rolls around, he can't wait to take it off. But, the cast has helped. I see his left hand get stronger week by week. When I think back to what that hand could do 3 weeks ago vs. what it can do today, I am amazed. He is still on schedule to be discharged next Friday.

Last week Mikey and several of the kids at OCH went on an afternoon field trip to Bass Pro Shop. It was a chance for them to get away from the hospital and have some fun. Everyone enjoyed themselves and are looking forward to next weeks outing, a Texas Rangers baseball game Wednesday night. Wish I could go!

Mikey has turned into quit the little card shark during his stay. He has organized a nightly Texas Hold 'em poker game with himself and 2 of the other boys on his floor. They play each night with a bunch of Skittles. It is a lot of fun to watch these 3 shooters playing cards. When he is not trying to be a World Series of Poker Champion, Mikey enjoys playing Yahtzee and rummy with mom and dad and grandma.

Speaking of grandma (my mom), I will be forever thankful to her for coming down to Texas and staying with us. She was a tremendous help, both around the house, and at the hospital. It was a God send to have someone around to help with the other kids at home, and stay with Mikey when we had to be somewhere else. Thanks Mom!

2 more weeks

We got the word yesterday that Mike should be released from OCH on Sept 4th, which is 2 weeks from today. That was some good news. He continues to make progress, but still has a long way to go with the left hand. Once he is released he will return to McKamy Middle School and start 7th grade just a few weeks late. After he is released, he will need to continue his therapy on an outpatient basis 2 - 3 times a week.

Last post I mentioned that Mike had to have an EEG done to rule out that a seizure was causing his left hand to twitch. Well the results came back and it is just like we thought, he is not having any seizure. It is most likely just part of the healing process and should go away at some point as his spinal cord and nerves continue the healing process. His neurosurgeon says that we should expect some different things to happen to his arm and hand over the next 6 months as his cord and nerves work things out.

Mike is in good spirits most of the time, he still can get frustrated with his hand, but when we look back at the progress he has made over the past 2 weeks, it is amazing. I am sure he will continue to make good progress because he always works hard when he is with his therapists and improves with each session.

Mikey also had a follow up appointment with Dr. Swift, his neurosurgeon, yesterday. Dr. Swift was at the tumor board meeting yesterday and they decided that Mikey will not require any additional treatment for his tumor right now. YEA!! Based on the MRI that was done the day after surgery, the radiologist, surgeon, and the rest of the team are pretty confident that the entire tumor was removed. They are going to have another MRI done in about 3 months to set the new baseline image for his neck and to confirm that the tumor is gone. After that there will be MRI's every 3 months for several years to keep an eye on Mike and compare each new MRI with his new baseline.

Mike also got to get his stitches removed yesterday and he was very happy about that. When we meet initially with Dr. Swift, he applied some numbing cream to his neck and told us it takes about 40 minutes to work and that we could go get something to eat and come back to his office, then he would remove the stitches. So we go to the food court and eat and on our way back Mikey states that he is glad that Dr. Swift, instead of one of his helpers, is taking his stitches out "because I have confidence in him." I was cracking up! I would hope he had some confidence in him, since he had Mike on the operating room table digging around in his spinal cord for 11 hours.

Now for just a brief shout out to Dr. Dale Swift and the rest of the team treating Mikey. This team has accomplished something amazing. Considering what we were told after the first operation in Detroit, it is an under statement to say that I was more that a bit nervous going into the second operation, but Mikey came out of it with as close to flying colors as I think was possible. Dr. Swift knew from our first meeting with him that he would be able to get this. I now know why God brought us to Dallas. It was to get us close to Dr. Swift and the entire team at both Children's Medical Center and Our Children's House at Baylor. We heard about Dr. Swift's reputation before the surgery, but during our stay at OCH the past week we have come across several people that also had him as their doctor, and they have had equally amazing results. We are eternally thankful to have meet Dr. Swift, I hate to think about what the outcome might have been had we not.

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.