Michael’s Journey

On September 21, 2004, our 10 year old son, Michael, went home to be with the Lord after a short but very courageous battle with cancer.

When you become a Christian, your most primary goal is to make it to Heaven to be with Jesus Christ in eternity …. Michael has achieved that goal because of his unwavering faith in Jesus Christ as his very own personal Lord and Saviour.

The original blog was hosted on CaringBridge and we felt the need to move those entries in order to free up space for others to use the CaringBridge service. “Michael’s Journey” has found its way here and what you are about to read are the unedited entries of “Michael’s Journey”…….

Published in: on July 11, 2009 at 3:48 pm  Leave a Comment  

The Journey Begins……

In March, 2004, Michael began complaining that his right eye was watering. We overlooked this since it was windy and we had been working outside with our animals getting them ready for the 4-H Youth Fair. A week or two later he showed us a lump just under his right ear. That was on Friday, March 22, 2004.

On Monday, March 25, 2004 we got an appt. with the pediatrician. He checked Michael out very thoroughly and after several tests, thought it might be viral. Our pediatrician sent us home with meds. We ended up making several trips back to the pediatrician (blood work, x-rays, pokes, & prods) but everything was coming back negative. By this time the lumps were on both sides of the neck so our pediatrician referred us on to an Infectious Disease Doctor. We have many farm animals and he was guessing that the trouble may have started with some of our many farm animals coupled with the fact that Michael is a 10 year old farm kid with a curiosity that would make even Albert Einstein jealous. We made our first visit to the Infectious Disease clinic on May 26, 2004.

The Dr. decided to have more extensive blood work done and had even mentioned possibly doing a biopsy on the enlarged lymph nodes on his neck. He decided that a biopsy at this point could be put off until a last resort. The Dr. put him on a strong medication and sent us home.

On June 1, 2004 we went back to the Dr. to receive the results of the blood work. I must say that I was a nervous wreck because I just knew it was going to be bad news. Instead, all of his results were negative, but we still had two tests that had not come in yet. These were the two zoonotic tests that our Dr. believed might be the possible cause for the swelling. A few days later the results from that test came back also and proved to be negative, but the Infectious Disease Dr. still believed that it was animal related.

On June 14, 2004 I called the Dr.’s office to let them know that Michael’s eye was really swelling and that I was concerned. We had been in the sun on Saturday so the Dr. felt it was a reaction to the medication he was taking. He told us that there wasn’t a need to come into the office, but to stop the medication and start him on Benadryl.

On June 18, 2004 I called the office again because the right eye was not getting any better. The swelling had gone down some, but I was concerned about his eyesight because the eye appeared to be bulging out and the glands on both sides of his neck were large as if he had mumps. I asked if we could do an MRI or CT scan instead of a biopsy but the Dr. said he had seen this sort of thing a lot and he still didn’t think anything was wrong because Michael could see well out of the right eye. He said that if the swelling was still there on Monday to call the office.

On Monday, June 21, 2004 I called the office to let them know that Michael was now complaining of headache’s and nothing was better. I was informed that the Dr. was out of the office all week and wouldn’t be in until the following Monday and they would schedule Michael an appointment for then. I asked if their was anyway to see a Dr. that day, but I was told it would have to wait until the end of the week possibly to see one of the other Dr.’s and if I felt that this was a serious enough problem to then call my pediatrician because they didn’t really know his case, nor did they have time to see him.

I called my pediatrician and was able to get in at 1:20 p.m. that day. I then called my veterinarian to talk with her to see if she knew of anything that could possibly be animal related that would cause these sort of symptoms. She explained that round worms from dogs could cause swelling in the eye and that an good ophthalmologist would be able to detect round worm larvae in the eye if this is what was wrong. Other than this, she had no idea what could be causing all of the swelling.

When the pediatrician saw Michael later that day he was floored! He couldn’t believe the changes he had seen in Michael. It had been a month since we had had him in the office and he couldn’t believe that nothing had been done. He didn’t know what to do, but we told him that we had called our vet. and explained to him what she had told us. It just so happened that our pediatrician had a friend who was an ophthalmologist and could see us that afternoon. We drove over to his office and when the exam was over, we knew something was desperately wrong. The ophthalmologist told us that this was NOT something viral but something much more serious. He then sent us back to our pediatrician who then sent us to Cook Children’s Hospital in Ft. Worth for imaging.

We arrived at the ER around 6:00 p.m. Sometime around 9:00 p.m. they took Michael to get CT scans. The attending physician felt that the original diagnosis (animal related disease) was correct and he explained to us that an ophthalmologist was not really qualified to tell whether something was viral or not. Sometime around 11:00 p.m. the attending physician came and told us news that changed our life forever. He explained that the CT scans showed a very large mass behind the eye and it was working its way to the brain region but they couldn’t be for sure as to how extensive it really was. He also explained that he could not be for sure, but was assuming that this was a malignancy.

Around 2:00 a.m. they finally got us to our room on the 3rd floor. I will never forget getting off of the elevator and as we walked the hallway to our room I looked up and the sign read “Hematology / Oncology”. I knew that somehow this was a mistake and we would be out of there by the next morning, but that wasn’t the case. The two nurses that helped us in our room were so kind and sweet; I will always remember them. I don’t think I slept a wink that first night. I paced the floor; cried; begged and pleaded with God; and cried some more.

When we got the news in the hospital about the mass that was found, we had friends that were with us. They ended up taking Justin home with them so he could get a good night’s sleep. Mickey made sure we were settled and then headed back to the house because the animals needed to be tended to and Justin was going to be brought back by the house in the morning.

Praise Report: The room that we were in, was only 1 of 3 rooms that size. We had the biggest room on that side of the floor! I thought it was a suite and wondered how in the world we would ever afford this, but I found out later that all the rooms were the same price and this room just so happened to be available. God is good and he knew we would need the extra space in the coming days!

Published in: on July 11, 2009 at 3:48 pm  Leave a Comment  

June 22, 2004

I am not exactly sure what time it was, but I am thinking it was somewhere around 7:00 a.m. Dr. Howery came in to meet me and explain the days proceedings. He also wanted to get some history as to how we had gotten to this point. He said that he was going to try to get several things scheduled but wasn’t for sure if he could get it all accomplished that day. Dr. Howery wanted to get a surgeon to take a biopsy of the sinus cavity and then have it immediately sent to pathology to find out if this was malignant, or benign. If the culture came back malignant then they would need to have another surgeon implant a port. The last step would be to have a bone marrow aspiration done, which he could do himself. Many people needed to be available all at the same time, but he would try his best to get it all pulled together some time that day.Our pediatrician called to see how things were going and he had already gotten the latest reports. I thought that was sweet, but he couldn’t believe it was 2:00 a.m. before we finally got to our room!Gerald Sanderson (deacon of our church) came by later that morning. While he was there, Dr. Howery came in and told us that he thought he could get all of the surgeons together that day but it would be around noon or after before he could get everyone together. Keith and Janie Martin came up to visit with us and around 11:00 a.m. someone from surgery was waiting at our door to take Michael downstairs! We asked for a few minutes for prayer before they took him and then we all went downstairs. Michael was really scared about going under the anesthesia because he had never had anything like this happen before. We called Gerald to let him know that Michael was already in surgery so he came back to the surgery waiting area with us. A little while later Ramona Brown joined us. When they took us in the counseling room to receive the results of the surgery, Keith and Janie Martin, Gerald Sanderson, and Ramona Brown were with us. The surgeon came in and told us that it definitely was malignant and they were putting the port in him at that moment, then Dr. Howery would be doing the bone marrow aspiration. By this time, God had already shown us what the results would be, but it still didn’t make it any easier having what we already knew, now confirmed. We prayed for quite awhile in that little room. Finally Michael made it out of surgery and we took him back to his room. He was in quite a bit of pain from having the port put in, so they kept him sedated.

Visitors: Keith and Janie Martin, Ramona Brown, Gerald Sanderson, Ron & Jere Watson, Bro. & Sis. Kirkland, Tommy & Rhonda Tackett, Jake & Michelle Tackett, Karen Chatham, The Schoonover Family, and Pete Peterson.Calls: Bro. & Sis. Maxon, Sandy Boatner, Beverly Jones, Uncle Timmy, Grandma, Holly Blake, Aunt Ruby, Grandpa Leo, Arvell & Mary Helen Hubbard

Praise Report: God preformed a miracle by getting all of the Dr.’s together at one time and available to perform the surgeries when needed.

Published in: on July 11, 2009 at 3:47 pm  Leave a Comment  

June 23, 2004

Today was a day of rest and a chance to try to absorb everything that had happened over the last couple of days. Michael did much better than what we expected. He decided to get up and move around. He also quickly found out that hospital food is NOT mom’s cookin’! We met Dr. Wilkinson later that day and she let us know that they determined that Michael had Rhabdomyosarcoma. She was concerned with the extent of the tumor and they would try to determine if he was a level 3 or a level 4. She let us know that we had a 30% chance of recovery, but we know that God holds onto the other 70%. She also let us know that we would be having many tests run the following day.

Visitors: Jeff Tackett, Keith Martin, Allen & Sandy Boatner, Janie Martin, Tammy Hudgins, Gene & Venita Brown, DeFatta Family, JJ French & Family

Calls: Grandma, Nick Visintainer, Tommy Blevins, Bobby Stout, and Grandpa Pat

Praise Report: Michael’s spirits are up and he is moving around very well.

Published in: on July 11, 2009 at 3:46 pm  Leave a Comment  

June 24, 2004

Today was an early day with testing. Michael had more CT scans, an MRI, and a Nuclear Bone Scan. There is a small dot on his right leg that has shown up on the bone scan. The testing took a good portion of the day and we were all exhausted by the time we got finished.

Visitors: Keith & Janie Martin, Michelle Tackett, Gerald & Jodie Sanderson, Cleo Raimone, Sam Anderson, Carrie Kirkland, Bob Diekmann, and Rebekah Kirkland

Calls: Elonda Patterson

Praise Report: The spot on the bone scan does not appear to be cancerous. Michael made it thru the hour and a half long MRI!

Published in: on July 11, 2009 at 3:45 pm  Leave a Comment  

June 25, 2004

Today was a day of more surgery. Dr. Wilkinson thought the best course of action would be to insert a G-button (stomach feeding tube) and to biopsy the neck lymph nodes. She would also perform a spinal tap to make sure that was clear. Michael was not as scared about the surgery this time. In fact, he was trying to stay awake so he could hear himself talk funny. He wanted to make the Dr.’s laugh. Now isn’t that like Michael?!

Visitors: Keith & Janie Martin, Jerry & Andria Streubel, and Jeff, Cindy, & Rachel Tackett.

Calls: Phillip DeFatta, Mitchell Davis, Mary Helen Hubbard, and Curina Morris

Praise Report: Cindy took me (Tammy) to Walmart! Believe it or not, I had been praying for someone to come by to take me to Walmart so I could get some different shoes and some personal items. I also wanted to get some bottled water so Michael would drink more fluids.

Published in: on July 11, 2009 at 3:44 pm  Leave a Comment  

June 26, 2004

Dr. Wilkinson explained to us the type of cancer Michael has is Alveolar Rhabdomyosarcoma. She wanted to see if she could get any more input from other Dr.’s around the country. She also let us know that Michael had been classified as a Group III, Level III, but she still felt that he was borderline and that it was a technicality. She explained the different medicines that he would be taking and his chemo would be referred to as a VAC treatment. Michael will undergo 42 treatments with the VAC being on ever third treatment and then Vincristine on the two alternate weeks of treatment. He will also start out with radiation instead of waiting due to the severity of his case. Michael will undergo 28 radiation treatments. Grandma flew in this morning to surprise Michael. Boy was he surprised!! It sure made his day.

Visitors: Rod Adams, Wanda Adams, Grandma, Jimmy and Sharlyn Hicks, Wanda Craft, Bill Malone, Mike & Elonda Patterson, Gene & Venita Brown, and Robert and Ramona Brown

Calls: Jim & Beverly Manney, Grandpa Leo, and Norma Garcia

Praise Report: God has shown us that he wants us to “step out into the water”. He has assured us that He will be with us, but we are to keep our eyes upon Him and not look down. The waters may get rough and rocky, but we must always remember that He is with us and will lead us thru this storm.

Michael with his John Deere pillow that mom had made for him a couple of years ago.

They were selling crafts and baked goodies in the lobby of the hospital so we got Michael this cookie decorating kit.

Justin stopping for a moment to give a big grin for the camera

Published in: on July 11, 2009 at 3:43 pm  Leave a Comment  

June 27, 2004

Michael received his first chemo treatment today. What a way to start out a week! He got sick right away, but then he felt better. He even went and took a walk and played in the playroom for awhile. Around 2:00 p.m. he started to get a little tired and spent most of the day just lying around.

Visitors: Rod Adams, James Wall, Holly & Bridgette Blake, Myra, Robert & Ramona Brown, Bro. & Sis Kirkland, Vivian

Calls: Grandpa Pat, Grandpa Leo, and Kathy Elkins

Praise Report: Michael’s chemo went well and although he feels a little sick and worn out, I think he is more ready to go home than anything.

Published in: on July 11, 2009 at 3:43 pm  Leave a Comment  

June 28, 2004

Michael is doing good, but he is really ready to go home. Grandma is still here and that is keeping him busy. Mickey had bought cots to bring up to the hospital so their were enough beds for everyone. Michael has been keeping everyone busy in the playroom. A physical therapist has come in to check on him and they were running around the halls! Yes, Michael had his “pole” with him also pushing it in front of him like he was driving a race car! Michael is really ready to go home, and I think we all are. This is the start of our second week here. Everyone has brought so many snacks and drinks that we are considering opening a snack bar back here in the back part of this room. (Just joking!)

Visitors: Keith Martin, Sandy, Ryan, & Rachel Boatner, Cleo Raimone, Sam & Cody Anderson, and Martin & Norma GarciaCalls: Kathy Elkins, and Janie Martin

Praise Report: Michael is doing great!

The nursing staff was so sweet! (Katelyn)

This was Michael’s favorite nurse. I think he liked her best because she wasn’t much taller than he was! (Claudia)

This is Tammy’s favorite picture of the boys together.

Michael and Keith playing air hockey

Notice that intense look on Michael’s face? He is determined to win.

Published in: on July 11, 2009 at 3:42 pm  Leave a Comment  

June 29, 2004

Okay, it is time to get outta here! We are going stir crazy. This room seemed huge when we first got here, but now it is getting cramped. The nursing staff has been wonderful and they are trying to make it as easy on us as they can, but we just want to go home! Dr. Bowman has informed us that we will probably get outta here tomorrow! YEAH!! Also, all of the nursing staff and Dr. Bowman have commented that they can tell a difference in Michael already.

Visitors: Ron & Jere Watson, Ella Mae Landis, Susan Bryan, and Jeff & Toy BarfieldCalls: Janie Martin

Praise Report: The one chemo treatment Michael had on Sunday has already begun to work and everyone can see a difference! And, we are going home tomorrow!!!!

Published in: on July 11, 2009 at 3:41 pm  Leave a Comment  
Follow

Get every new post delivered to your Inbox.