History

Friday, December 29, 2006 10:29 PM CST

TGIF!

These last few days have been wonderful! I have enjoyed having both boys home from school, we have played all kinds of new games they got for Christmas. They both love it when I sit down on the floor and give them my full attention. I have spent more time just playing with them and just letting the laundry and house work go for now. As soon as daddy comes home from work they both drop whatever they are doing and greet him with hugs. I believe these are the moments we will cherish forever.

Michael is really interested in checkers and has become pretty good, he has also enjoyed his Dancing Mario alot. Mitchel just watches as Michael dances away and tells him to be quiet he is concentrating on the moves. (Dancing Mario hooks up to their game cube and has a mat that you can dance on with Mario, they really like it). Their big present this year from Santa was their nintendo DS players. Everytime the commercial would come on TV they would run into the living room and yell that is what I want from Santa. I have slipped up a couple of times and mentioned daddy sure picked out some good games, they quickly corrected me and said "no mommy, these are from Santa", oh right how could I forget! Whoops!

The boys are feeling much better today, their coughs are almost gone and they have not had a fever for several days. I am so sad to report that Mitchel's curls have all been cut off. I debated this decision for a long time and his hair was getting out of control so he agreed that it was time to say goodbye to his curls. For the past week he was not happy about me brushing out his hair, his curls would be a matted mess every morning, we would have to wet it and gently comb it out. He was beginning to cry when I would try to comb it, he just wanted to leave the matted part there and not comb it at all. I have to say he looks much older with his hair cut and so handsome, of course. He sat in the chair at the hair salon and just watched as the stylist cut away. I could not believe how much hair was laying on the floor, he did not say a word until the end and finally he confessed that he liked it.

He is now loosing another tooth, I am sure he will wiggle it out soon, the last tooth he lost brought him $5.00. He has a very good memory!

I will add new pic's of his hair cut soon.

Love to all,

Mary

Thursday, December 28, 2006 8:57 AM CST

Good morning,

We took Mitchel to the doctor yesterday and he has a sinus infection. He was put on a antibiotic and hopefully this will clear up the infection.

He has been feeling really good with lots of energy, has not had fever in several days. The antibiotic tastes really yucky and I hope he will take it all, last night it was a reall challenge to get him to take it. He spit it out several times before getting it down.

Thanks for checking in on us,

Mary

Tuesday, December 26, 2006 6:10 PM CST

Hello everyone,

Thanks for checking in on us, we are all enjoying our Christmas break. We have been to Mike's families and mine over the past week. We are home now our visit with my family was cut a little short due to the fact that both boys have not been feeling to good. Mitchel has run a very high temperature the last few nights, last night it got up to 104.8, I was so scared. We had given him tylenol and it did not do anything so we put cold rags on him and more tylenol and finally he fever broke. He has a cough and some congestion in his chest.

This morning he woke up with a slight fever and has been playing all day feeling pretty good. He has an appointment tomorrow with his pediatrician here at home. We will keep an eye on him tonight and take him to the ER if his temperature goes that high again tonight. Last night there was no place to take him, my parents live out in the country in a very small town. The closest hospital was 1 hour away.

Michael is having alot of congestion in his chest but his fevers have been low grade. I think he is getting over his cold. Mom and dad are very tired, we have not had a good nights sleep in several days so we are looking forward to sleeping in our own beds tonight.

Thank you to everyone that donated to Lunch for Life, Mitchel's tree was alot of fun and he truly enjoyed counting his ornaments everyday.

Hope everyone has a great week and a Happy New Year!

Love to all,

Mary

Friday, December 15, 2006 1:43 PM CST

EVERYONE IS WELL! BACK IN SCHOOL AND WE ARE READY FOR CHRISTMAS!

MITCHEL NOW HAS 452 ORNAMENTS ON HIS TREE! HE HAS ALMOST REACHED HIS GOAL OF 500.

If you wish to put an ornament on his tree simply go to the website LUNCHFORLIFE.ORG and use Mitchel's giving code of 19680 so he will get credit and receive another ornament. Each ornament cost $5.00 and ALL MONIES GO DIRECTLY TO NEUROSTATOMA RESEARCH!!! He would really appreciate it!!!!

THANK YOU, THANK YOU, THANK YOU FOR THOSE OF YOU WHO HAVE ALREADY PUT AN ORNAMENT ON HIS TREE!!!!!

Love to all,

Mary

Thursday, December 14, 2006 10:34 AM CST

Happy Thursday,

This week is just flying by. We are all doing just great, Mitchel and Michael and full of energy and having a great time being together.

Yesterday Mitchel wanted to stay home with mom and I of course said okay. He was ready to get back to school today, right when he walked in he handed his teacher her Christmas card with his picture inside, he just loves giving out those cards. She was so happy to have it and Mitchel just smiled, he was so proud of his picture.

We are still getting ready for Christmas, almost there just a few more presents to buy. It is so great to be home for the holidays!!!

We just bought out tickets to return back to NY in January, I hope the time goes really slow between now and then. Mitchel will be having scans done then, this is always a stressful time. But we are not going think about all that now.

Love to all,

Mary

Sunday, December 10, 2006 11:26 AM CST

Happy Tuesday,

We are all doing great! It is so nice to be home and back into our little routine. Mitchel jumped right back into school and is having a great time. This afternoon when I picked him up he had three little packages all wrapped up, one for me, one for daddy and one for brother. No matter what I get for Christmas this will be the most meaningful present. He gave us specific instructions not to open it until Christmas. He used Christmas paper and alot of tape, this is the best present ever!

MITCHEL HAS 411 ORNAMENTS ON HIS TREE! HIS GOAL IS 500 SO PLEASE E-MAIL YOUR FRIENDS A FAMILY SO WE CAN GET HIS TREE FULL. GO TO WWW.LUNCHFORLIFE.ORG AND ENTER HIS GIVING TREE CODE OF 19680 ON THE DONATION PAGE, YOUR NAME WILL APPEAR AT THE BOTTOM OF HIS TREE.

Love, Mary

Thursday, December 7, 2006 10:13 PM CST

Good evening,

I cannot sleep so I decided to update Mitchel's website. He is sleeping next to me, he always falls asleep in my bed and then I take him to his later. These beds are just not made for two people.

We had a great night, he did not have any pain all evening. We went to the Christmas party here at RMH they had really great food and a magic show for the kids. Mitchel really enjoyed it. After having desert Santa Claus came and brought presents for all the kids. Mitchel got a big tub of Legos, he will enjoy builing with them, hopefully they will fit in my suitcase.

Well we are finished tomorrow and we have decided to take a 8 week break this time from treatment. They allow a 6-8 week break in between treatment cycles so I guess we will go for it. We do have to return for scans in January but we will only be here for 2 days. It will be so nice to have so much time off.

I have felt God's grace all week and I want to thank all of you who have prayed for us.

Love to all,

Mary

Thursday, December 7, 2006 10:45 AM CST

Good morning,

We are so excited about coming home tomorrow! Mitchel's treatment today was the worst for pain and yet his heart rate did not reach the levels as earlier in the week. Not sure why, he needed 3 rescues and did alot of screaming.

After yesterday's treatment he slept until 5:30 and we went to the Christmas party, they had pizza and Santa came to see the kids. Mitchel and his friend Jordan played until 8:30 and we went up to our room. Tonight we will be packing and washing our sheets getting ready for our departure tomorrow. There is another Christmas party tonight with dinner so that will be nice.

Today Mitchel met retired NY Ranger hockey player Adam Graves. He was really nice and signed autographs and Mitchel had his picture taken with him. He was receiving his vistril at the time so he was a little out of it but managed it pretty well.

The clowns came by his room and that seems to be the hightlight of his morning, he loves them. Before they left he gave them each one of his famous Christmas cards with his picture inside. I think his picture is now hanging all over this hospital. He has some made up for tonight to give out to his friends at the RMH.

Hope everyone has a wonderful day!

Love to all,

Mary

Wednesday, December 6, 2006 9:40 AM CST

Happy Wednesday,

Day 3 and 2 more to go. We are on the count down!

Yesterday's treatment went alot better he had pain but was managed with only two rescues of dilaudid. After leaving clinic we went back to RMH just in time to meet Whoopie Goldberg, she was there visiting the children signing autographs and giving gifts to the children. She also signed her new children's book, she was very nice and down to earth. We then went up to our room and he slept until 5:30, he was so tired. He wanted me to wake him up in time to go to the party down in the playroom, it was provided by the Exhale Spa, it was really nice they sang Christmas songs and the children played games. Mitchel was up and running around until 11:00. He had so much fun. He and I received a wonderful gift from them.

Tonight they are having another party, he is looking forward to it already.

We probably won't get out to see many sights this trip since we will be leaving on Friday, I was hoping to see the big christmas tree and ice skating rink at Rockafeller Center but I would rather be home!

Thank you all so much for making donations to the Lunch for Life program and putting so many ornaments on Mitchel's tree. Last count he had 369, ornaments can be put on his tree until December 24 and donations can be made anytime after that on the lunchforlife.org website.

Please continue to keep Mitchel in your prayers and all the other families.

Love to all,

Mary

Tuesday, December 5, 2006 9:35 AM CST

Happy Tuesday!

Things are moving right along we will be home before we know it.

Mike and I have deicided to postpone the stem cell collection for now, our insurance company is requiring more time to make a decision on whether they will pay for it or not so we will wait a little longer. We did contact St. Jude and they have several bags of stem cells being stored for Mitchel and they are labeled negative for tumor. We may just decide to use them if we ever need them in the future.

So we will be home on Friday instead of next week, Yeah!!!!!

Mitchel and I are thrilled of course!

He has not started his treatment today but I am guessing the pain will be about the same as yesterday.

He was so cute this morning passing out his Christmas cards with his picture inside. He was giving one to everyone and say Merry Christmas!

We met a new family from Oklahoma today, they are so nice and their son is 8 years old. Please keep the Briscoe's in your prayers, it is hard coming to a new hospital especially here in NYC.

Today Whoopie Goldberg is coming to the RMH but I don't think we will be there in time to see her, I wanted to get Mitchel's picture with her.

Thank you all for your continued prayers!

Love to all,

Mary

Monday, November 27, 2006 11:03 PM CST

Hello from NY,

We made it here just fine, our flights were the best yet, on time and very smooth. The Dallas airport was not crowded at all and that was really nice.

We arrived here about 5:30 pm and Mitchel and I enjoyed seeing all of our friends again. We have met some new families as well. Everyone is so nice and makes us feel welcome everytime we return.

This morning has been very long, Mitchel's treatment started with pain almost immediately and lasted for quite some time. His heart rate went up to the 180 range and is slowly coming down. He is finally asleep for now, thank goodness today has been tough already.

He was weighed and measured this morning, weighing in at 43 pounds and measuring in at 46 inches. I told him he is getting tall enough to ride some of those roller coasters he has been wanting to ride. He smiled! The doctors all said he looks great.

The plan is for him to receive the 3F8 all week and then on Monday morning bright and early they will get him going on the stem cell collection. They will begin by putting in a pretty good sized needle in either his leg or chest to draw out the stem cells. If they are successful in drawing out some on Monday they will do another drawing on Tuesday. If they are not successful on Monday then that will be it and we will go home. The stem cells could be necessary for a future treatment and we are hoping to get a good collection to be stored away.

This week there are alot of parties and dinners planned at the RMH we will see if Mitchel will be up for going or not. Last night he made christmas cookies and ran around with his friends, they all enjoyed seeing each other again.

Thank you all for lighting up Mitchel's giving tree, so far he has 347 ornaments. I cannot tell you many times he has checked his tree today, he's wearing out the buttons on the computer. I love it! IT ONLY TAKES 500 HUNDRED ORNAMENTS TO FILL HIS TREE PLEASE DONATE IF YOU CAN AND LET'S LIGHT UP HIS TREE! EACH ORNAMENT MITCHEL'S HAS ON HIS TREE ENTERS HIM INTO A DRAWING FOR A TRIP TO DISNEY.

They are excepting donations for the giving tree program until December 24. All donations go for Neuroblastoma research, if you are interested in making a donation please go to WWW.LUNCHFORLIFE.ORG and please use Mitchel's giving tree code to make a donation in his honor and add another ornament to his tree. CODE # IS: 19680

Love to all,

Mary

Sunday, November 26, 2006 8:12 PM CST

Happy Sunday,

We had a wonderful Thanksgiving, it was so nice to be home before and after the holiday. We still have this whole week before we return to NY.

We went to Mike's parents on Thursday for Thanksgiving dinner and also celebrated Mike's birthday, then the boys and I left for papa's ranch leaving Mike behind to deer hunt. He eventually joined us at the ranch on Saturday where we celebrated his birthday again. The boys picked the most precious presents for their daddy. It is so much fun to just let them shop all on their own and see what they come up with.

As you can see from the pictures the boys had a wonderful time at papa's. In four days they only watched one movie and did not even ask to play video games instead they spent their time playing with the dogs, horses and papa took them to help feed the cows everyday. They have also discovered how fun it is to scout around for deer with their binoculars (sp?). Papa had them collect firewood and pine cones and we had a wonderful fire out back, the boys had hot dogs and marshmellows, Mitchel loves marshmellows. Gigi made them all their favorite foods and spoiled them rotten, she is good at spoiling everyone! Thank you Gigi, we love you!

Mitchel is doing great after his ear surgery, he goes back to the doctor on Friday. After his appointment we are going to Tulsa to meet daddy and find that perfect tree, do some shopping and eat lunch. Then we will return home and get all of our x-mas decorations out, the boys are so excited about getting all ready for x-mas. We promised Mitchel we would have it all set up before he leaves on Sunday.

We truly have so much to be thankful for, especially for all the prayer warriors that continue to lift Mitchel and us up in their prayers. Thank you all so much for that!

Have a great week!

Love to all,

Mary

Monday, November 20, 2006 12:45 AM CST

UPDATE: Mitchel came out of his minor surgery just fine, he was a little grumpy and stayed under the covers all the way back from the surgery room, he did not want anyone looking at him for some reason. But it wasn't long that he wanted to leave and go home so he came out from his little cocoon. Thank you all for your prayers!

Hi everyone,

Thanks for checking in on us. Mitchel had his visit with the ENT this morning and we all decided that his ears are not getting better and he will have tubes put in. The left ear is especially full of fluid and is not draining at all. We feel this has gone on long enough and all the antibiotics he has been on are only masking the problem.

Please say a prayer for him as he will be having the surgery done in the morning. It is only a minor surgery and will be done by Dr. Holland here in Bartlesville.

HAPPY THANKSGIVING!

Love to all,

Mary

Saturday, November 18, 2006 4:23 PM CST

Happy Saturday,

We are having a wonderful weekend, the boys are running around playing non stop. I think they have envaded every room in the house, they are really into making forts right now and our living room seems to be the perfect spot. Every pillow in the house and comforter is now in that room. Mike and I just laugh and enjoy watching them have fun, the house being picked up can wait for now.

Mitchel is still having a few aches in his left so I made him an appointment for Monday morning to see the ear, nose and throat specialist. We are hoping to get a better plan to get his ears back to normal, right now he is on his 4th antibiotic since September 29.

Anyway, hope everyone is having a wonderful weekend. As you can see I added some new pictures, Mitchel enjoyed his kindergarden fall party so much, he is doing so well in school. This is truly an answer to many prayers!

Thank you all for your continued prayers and encouraging words.

Love to all,

Mary

Thursday, November 9, 2006 10:18 AM CST

Happy Thursday,

We are having a great week so far,except for Michael running a temperature yesterday. We took him in to the doctor and he seems to have whatever is going around, the cold thing, conjested and coughing a little. This morning he did not have a fever so he wanted to return to school. Hopefully he will be all better before the weekend because we are going to visit my parents in Wetumka,Ok. For those of you who are not familiar with Wetumka,Ok, it is a very, very small town down by Henrietta (sp), they do have a Dairy Queen though. Anyway, the boys just love it there hanging out with the texas longhorns, horses and the newest family member a small donkey. They will be excited to see the new baby calf too.

The weather here has been absolutely beautiful, we love it. Hopefully it will continue through the weekend.

I thank God everyday for this long break from the hospital for Mitchel and our family. It has made such a difference in so many ways for us as a family. All the travelling sure takes a toll on families, the separation alone has been hard for the kids. We are counting our blessings to have a full month home before a holiday, Thanksgiving will be so special this year for us.

Thank you all for your prayers, we know there are still alot of prayer warriors out there lifting Mitchel up.

Love to all,

Mary

Tuesday, November 7, 2006 10:58 AM CST

Happy Tuesday,

We are off to a great start this week! Mitchel is just loving school and it is getting easier and easier to take him. He actually smiles about going and he seems to be making new friends.

Thank you all so much for your prayers, our family has been through so much and we are survivors! That is such a great feeling, we have put our faith in God to work. God is so good!

We have many folks from around the country sending us encouraging words and making us feel so loved, thank you all so much for that.

Mike and I are truly blessed as we have faithfully trusted in what we know God can and has done in our family, going through something like this can easily tear families apart. All the pressures and emotions that we have all experienced has made us realize how important it is to completly give ourselves to God. I know there have been days when that was not easy, we have doubted many times, but God has always given us the strength to carry on.

Lately there have been many families we know personally that have been given the news their children have relapsed, some children have even earned their angel wings, so we ask that everyone continues to pray for each and every family affected by cancer, it is such a horrible disease.

Please continue to pray for Mitchel's complete protection from cancer, we don't ever want it to return!

Love to all,

Mary

Thursday, November 2, 2006 8:29 PM CST

Happy Thursday,

I cannot believe it is already Thursday, where has this week gone.

As you can see from the new pictures the boys enjoyed trick or treating so much. Their costumes were so cute.

Mitchel went to the doctor yesterday for a follow up visit for his ears and to my surprise he still has an ear infection in one ear. So he started another antibiotic last night for another 10 days. He seems to like the flavor of this one which makes it so much easier for us giving it to him. He received his 2nd round of immunizations and his flu shot, the rest of the family has received theirs also. No one wants the flu!

The boys are doing great and I am happy to report that Mitchel is actually excited about going to school these days. He is making friends and smiling as we go into the school. I cannot tell you how happy this makes me to see him enjoy school. I knew this long break would make so much difference in all of us.

Thank you all for your continued prayers, we are amazed that so many people care.

Love to all,

Mary

Monday, October 30, 2006 11:05 AM CST

Happy Monday,

We had a wonderful time at Grandma's and PaPa's this weekend, it was so nice to see Mike's family and let the cousins all hang out. We took all the kids to the carnival in Independence, KS on Saturday and the boys rode rides non stop for 3 hours. Mitchel's favorite was the big slide and I bet he went down it at least 25 times. He sure got those little legs of his working climbing all the way up carrying his gunny sack. Michael has discovered how fun it is on the more advanced rides, he rode the ride that you lay down on and you feel like your flying way up in the air and he loved the spider. He is growing up so fast.

Tuesday we are heading up to Grandma's again for our annual Halloween celebration. We start off with an awesome bowl of Grandma's chile and then hit the streets for some trick or treating. Neodesha is a very small town and they really play up Halloween, all the kids participate and come out for a treat, it is fun to see all the different costumes. Michael has decided to change his costume, instead of a ninja turtle he is going to be a ninja fighter, Mitchel is sticking with his Elmo costume.

We have some dear friends of ours whose son has relapsed, his name is Jordan and the family is from England. We met them two years ago at the RMH in NY and we just love them so much. Mitchel and Jordan have spent alot of time playing and running around the RMH together with all the other friends. Please pray that the doctors will be showered with wisdom as they put together a plan this week for Jordan.

We spoke to are wonderful friends the Runde's yesterday and James is doing just great all scans show no evidence of disease he is completely clear again, PRAISE GOD!

Please continue to pray for Mitchel, we believe in his complete healing on earth!!!

Love to all,

Mary

Thursday, October 26, 2006 2:55 PM CDT

Another successful day at school for Mitchel. He stayed until 2:00, he was in his music class when I arrived and seemed to be enjoying himself. I guess we will work towards 2:15 next week.

I wanted to mention a way everyone can help fight the fight for pediatric cancer. Two of Mitchel's doctors, Dr. Kim Kramer and Dr. Brian Kushner are participating in the NY Marathon coming up real soon to raise money for the Sloan Kettering pediatric cancer research.

All of your donations can go in Mitchel's honor and the doctors can see how many people are standing behind Mitchel in supporting a way to find a cure. We are donating to both doctors as they are each so dedicated and care so much about all their patients.

Here is the link, all participants get a list of the donors that give. Thanks so much for considering this. Dr. Kramer and Dr. Kushner are on the list to donate to.

https://fredsteam.mskcc.org

Then click find a Team Member

Type in Kim Kramer or Brian Kushner

The City is New York, the event INGmarathon

It is simple and takes only a few minutes of your time!!!

Love to all,

Mary

Wednesday, October 25, 2006 8:01 PM CDT

Hey everyone,

Thanks for checking in on us, we are all just doing great! Mitchel is back in school and feeling much better. I took him for his monthly HAMA blood test, a CBC and I also asked them to check his thyroid. All of his counts looked beautiful, yeah! Since he has had so much radiation to his neck area I was a little concerned about it affecting his thyroid but all is good.

All the nurses just loved his hair, everyone plays with his blonde curls. They asked me to never cut it, I replied don't worry I won't.

The boys are all excited about Halloween, Mitchel will be Elmo this year and Michael will be a Ninja. We are traveling to Grandma Bailey's this weekend to see everyone and go to Neewollah in Indepenece. The boys are excited to see their cousins and play all weekend.

I keep thinking about having to start packing to return to NY, but then I remember we have 7 weeks off this time!!!!!

Thank you all for your continued prayers and encouraging words on the website.

Love to all,

Mary

Sunday, October 22, 2006 2:37 PM CDT

Happy Sunday!

Thank you all for your prayers, our friends, the Franca's, Nick's scans came out clear and the suspicious spot turned out to be nothing.

We ask that you all begin to pray for another close friend of ours Marielle, who we met this summer in NYC. She is from Kansas City and her family just received the news that she has relapsed. We ask that you pray for strength, encouragement and God's mercy on the whole family right now.

Mitchel is doing better and better everyday. He has not run a fever since Thursday and his coloring is starting to come back. He has been white as a sheet over the last week. He hardly coughs now and he is eating much better, still not where we want him to be but we know that will come in time. He has until Thursday for the medicine, then he will be off of everything until we return back to NY in December. No more yellow pills!!! (Accutane)

I am taking him to Tulsa this week to have his HAMA test done, we were not having much luck finding someone here to do it. Well there was a lab here but let's just say sticking him 3 times for this test is unexceptable.

Our trip to Branson, MO was so much fun. The weather was pretty cold on Thursday but we brought all of our winter gear and played golf anyway. Friday we went to Silver Dollar City, I love looking at all the arts and crafts and the boys enjoyed the rides. Mike really loved how crowded it was, NOT! He did a great job being patient and had fun too! We really needed some time away and enjoyed every minute of it.

We have not decided yet if Mitchel will return to school tomorrow, we will see how he feels and looks in the morning.

Thank you all so much for your continued prayers for our family. We love you all!

Love to all,

Mary

Thursday, October 19, 2006 4:01 PM CDT

We are enjoying our little getaway to Branson, MO. The boys are in miniature golf heaven, Branson has several really cool courses, and of course we have to try them all. Our hotel has a huge indoor pool and they have enjoyed swimming. We are going to Silver Dollar City tomorrow.

Please remember our friends the Franca's, they need peace and encouragement right now.

www.caringbridge.org/visit/francafamily

Thank you all so much for your prayers, Mitchel is feeling much better and is even taking his medicine for his ears with little resistance. This is a huge accomplishment!

Love to all,

Mary

Tuesday, October 17, 2006 8:38 PM CDT

Mitchel is still not 100% yet. He is running a fever so I took him in to see his doctor, sure enough he has an infection in both of his ears. She prescribed him a new antibiotic for his eye and something for his ears. Hopefully by tomorrow he will start to feel better. Tonight he has been running around and playing.

We are going on our trip tomorrow and we hope he just keeps getting better each day.

Dr. Kushner gave some results of his tests last week.

1 - 2 bone marrow aspirates are negative and 2 are not
assessed yet, they always do 4 aspirates.

2 - Bone marrow biopsies are not in yet.

3 - His opinion of the MIBG was that it looked good to
him, no official report yet.

Hopefully we will here something soon on the rest of his tests.

Thanks for checking in on us!

Love to all,

Mary

Saturday, October 14, 2006 10:17 PM CDT

Home Sweet Home!!!!

After a long day we finally are home! Mitchel's MIBG scan looked clear! He will not have scans again for 3 months. I know he will be happy to have this break.

We are not scheduled to return back to NY until December 3.

Thank you all for praying, our trip home went smooth.

Mitchel is still fighting some kind of cold, his eyes are draining some yukky stuff and he complained about his ear hurting again, so we will probably take him back to the doctor on Monday. I think he has another ear infection.

Being at home will be great medicine for him.

Love to all,

Mary

Friday, October 13, 2006 10:38 AM CDT

5:25 - Dr. Modak just came in and said the MRI is completely CLEAR! Nothing to worry about, Praise God!!! What a relief, I have been on pins and needles all day. Whatever showed up on the CAT Scan seems to be nothing, he might have moved or something it is a very sensitive test. We will leave to return home after his regularly scheduled MIBG scan. Thank you all for prayers!

4:20 - Mitchel did great for his MRI, he is so amazing. He is now asleep after his treatment. He has had so many drugs in his little body today, I cannot believe it. His eye drainage has spread to the other eye so we are starting the eye drops today. He seems to be getting a cold because he is now coughing a little and has a soar throat. I am still waiting to hear from the doctor on the MRI scan. Thankfully the nuclear medicine nurse will be coming up here to inject yet another drug for his scan tomorrow. He will be happy about not having to move right now to another floor and he can just rest.

URGENT PRAYER REQUEST FOR MITCHEL!

They have found a suspicious spot on Mitchel's CAT scan from yesterday in his chest area close to the spine. They are doing a MRI of that area at 1:00 to find out more.

Please pray for strength right now and that nothing will show up on the MRI.

I will keep everyone updated as we know something, hopefully this afternoon.

Please pray Mitchel will be able to hold still for the MRI since he is having his bone marrow now he usually is very grumpy afterwards.

Unfortunately his MRI yesterday was only of his head, so that is why he needs another one today.

Love, Mary

Thursday, October 12, 2006 9:54 AM CDT

2:10 they just had to pull Mitchel's IV it was hurting too bad, sometimes they just do not last all week. He will have to get another one before his MRI tonight which is not the best news for him, he over heard us talking about it and bega to cry. He just wants to go home! He also is having an issue with his left eye, it is filling up with junk and is a little swollen, they will look at it again tomorrow to see if he will need any drops, Michael had the same thing happen at home. I pray that these next two days go by really fast!

What a day yesterday, we were one block away from the plane that hit the building here in NYC. I was on the phone at the RMH with my sister when I started to hear alot of helicopter and I told her to hold on so I could check out the window. When I opened the blinds I was surprised to see so many helicopters so close, I immediately something was wrong so I turned on the TV and could not believe what I was hearing. It all happened on 72nd Ave & 1st and we are at 73rd & 1st. The amount of people and police on the streets was unbelievable. We were so relieved to hear it was not terrorist related.

Mitchel slept after his treatment until about 7:30 and then we walked down to the store to get a steak. He ate over half of it, he was hungry. We played a few rounds of bingo and then went back to our room.

This morning I woke him up around 7:00 AM to drink his contrast. As usual he drank it down with no problems, we then walked down for his CT scan this morning at 8:30. He was crying at first and did not want to lay on the table, he feels sick to his stomach from all the contract, 10 ounces first thing in the morning would make anyone sick. Anyway, he made it through the scan and we are now in the clinic waiting for his treatment. The tricky part of today will be his MRI at 5:30 this evening. He usually is asleep about that time so I hope he will just stay asleep and be very still for the scan. After today things should be alot easier, his MIBG is on Saturday and he will be finished with his treatment by then, I am sure he will be in a great mood we are leaving to return home then.

Thank you all for praying for our friend James, they have discovered that the tumor in his head did not penetrate throught the dura or the brain. Thank the Lord! He is in ICU for now recovering from his surgery.

Please continue to pray for all the families that are dealing with pediatric cancer.

Love to all,

Mary

Wednesday, October 11, 2006 11:22 AM CDT

Things are moving right along, this week is almost over, Yeah! Mitchel and I are counting down the days till we go home. We are both excited about going on vacation next week, I know we all need a break right now.

Mitchel's treatment yesterday was so far the worst day. He neede 4 rescues and was in alot of pain. When we returned back to the RMH he just cried and put his head down on my lap, I held him and he eventually went to sleep. He woke up around 7:45 and seemed to feel much better, by 9:00 he was running around and ready to eat. By the time he made it down to the dining room to play all of his friends had gone upstairs, so we went for a walk and got a snack then we went back to our room. He went to sleep around 11:30.

Today he woke up in a great mood, took a bath and was very social to everyone at the clinic. His treatment today went very well and he did not seem to have as much pain, he only needed two rescues. He is now sleeping.

Tomorrow morning is his CAT Scan and then treatment and then at 5:30 is his MRI scan. I know he will need some good convincing about that scan because he will not be in a good mood. Please pray that it will all go smoothly.

Michael is back in school and feeling great! Thank you for your prayers, it is hard for me to be here when Michael is sick. I want to be in two places at the same time.

Love to all,

Mary

Monday, October 9, 2006 9:38 PM CDT

I just got a call from our good friends Jim and Dawn Runde, their son James has relapsed in the brain. They did a emergency MRI today and the news was not good. He has a tumor in the lower back side of his head. As you can imagine Jim and Dawn are devastated right now and are in need of our prayers. They have asked for peace and lot's of strength for the next few days as James will be having a whole series of scans to find out exactly what they are dealing with.

Mike and I have spent alot of time with this family over the last year and we love them so much. They are very special to us. James and Mitchel have played together for hours, they are always asking about the other.

Please pray for James and the whole family.

Mitchel is feeling much better tonight, he finally woke up around 7:30 pm and we went for a long walk. He wanted to get some grow animals and then we went to our favorite ice cream store, Maggie Moos. We then walked back and he ate a pretty good dinner. After playing with his friends for a while we came upstairs and it is now 11:00 and he is wide awake. I expected this since he slept all afternoon, I guess it is going to be a late night for us.

Mike took Michael to the doctor today, he ran a fever all last week with no other symptons, now he has a ear infection and his eyes are red and very irritated from all the drainage. He started a antibiotic, ear and eye drops as well, hopefully he will feel better tomorrow.

Love to all,

Mary

Monday, October 9, 2006 10:24 AM CDT

12:30 - Mitchel is now resting, the pain was more intense but he managed he way through it pretty well. He only needed two rescues and he so far does not have any hives. He did seem to have more moments where he could not catch his breath but it only lasted a few seconds and then he was fine, this only happened when his pain was so intense for a few seconds. Thank you for your prayers!

Good morning,

We made it hear safe and sound around 5:30 yesterday evening. Everything went pretty smooth on the plane, Mitchel slept all the way from Dallas, about 3 1/2 hours.

We got all checked in at the RMH and made our usual trip to the store to stock up on some of his favorite things to eat for the week. We are both hoping this week will just fly by.

They are going to begin his treatment in about 10 minutes. I am so anxious about this one because they are giving him a double amount of ouchie medicine, even though he has had the double dose before at the very beginning of his treatments I am still a little nervous. We have all his pain medication in place as well as his benadryl for hives just in case.

I will update after his treament and let you know how he is doing.

Love to all,

Mary

Friday, October 6, 2006 1:07 PM CDT

TGIF,

We are packing to go to Grandma's, the boys are so excited. Mitchel just took him bath getting all spiffy for Grandma Bailey. He told me yesterday he needed more hair gel, he really likes his hair, who wouldn't it is just beautiful.

Michael had a fever last night but so far today he has not had one. We hope he is at the end of the virus running its course. He has asked me everyday if he can jump on the trampoline and I keep telling him when he feels better and does not have a fever. Hopefully by tomorrow he can go jumping.

We will be updating again from NY, please remember us in your prayers as we travel on Sunday.

Love to all,

Mary

Thursday, October 5, 2006 10:23 AM CDT

Well both boys are home today, Michael is still running a fever and so far we have not been able to detect the actual cause of the fever. His doctor yesterday ran a strep test and it came back negative. She said he must have a virus and we just have to let it run its course. So we are just waiting it out for now. He does not have any symptons other than the fever, no running nose, no coughing, no nothing other than alot of bottled up energy from not being able to play outside.

Mitchel started his GMCSF injections last night and he tossed and turned all night long grinding his teeth. I knew he was going to be tired today and I just let him sleep in. They are both out of school tomorrow anyway for parent teacher conferences.

Mitchel has been talking about going to NY in a very positive way which makes us all feel better. He truly enjoys playing with his friends there and seeing all his favorite nurses and doctors. It is amazing how he explains the treatment procedure and it involves ouchie medicine. You would think they they run away as fast as they can but they don't.

We are still planning on going to Grandma's tomorrow, they boys are so excited. It will be a perfect weekend before we have to leave for NY.

Please remember Mitchel in your prayers, Praise God for all of his wonderful blessings. Mitchel is doing amazing!

Love to all,

Mary

Tuesday, October 3, 2006 7:09 PM CDT

Hello,

Mitchel is feeling so much better, but now Michael is sick. He has been running a temperature off and on since yesterday. I will be taking him into the doctor if he is not better by tomorrow.

Not much else to report just busy trying to keep everyone well.

Love to all,

Mary

Monday, October 2, 2006 11:26 AM CDT

Good morning,

Well this week is off the a great start. Mitchel went to school today, I told him he only had to go for a few hours and I would pick him up at 1:00.

He seemed to be happy with that. He is feeling so much better. Today we are celebrating him finishing his accutane, Yeah! He is very excited that today is his last day, he has been taking it for 6 months. It makes his skin dry out, makes him emotional at any given moment and sometimes makes his stomach not feel so good. He will start his GMCSF injections on Wednesday getting him ready for his treatment next week. And he is on a antibiotic until Wednesday for his ear infection.

He just can't get a break from all that medication, I guess that is just part of his life now. I feel terrible having to explain over and over again how he has cancer boo-boos in his body and the medication is to keep him getting sick again. I wonder if a 5 year old truly understands all of it or is he just doing it because he thinks it is part of his life now. He knows that Michael does not have to take medicine, he does however notice that when we go to NY all the kids there are just like him and they have to take their medicine too. I know this helps him understand a little better, but he still does not like it.

We are planning a great week at home before returning back to NY. They are both looking forward to staying at Grandma's Friday night.

Thank you all for your prayers, we love you!

Love to all,

Mary

Sunday, October 1, 2006 1:16 PM CDT

Sorry we have not updated in a few days, our computer has been attacked by a virus. That is so frustrating!

Anyway, Mitchel is now doing better. We ended up taking him to the emergency room on Saturday morning, he was crying about his ear hurting. Sure enough he had an ear infection. Poor thing he felt horrible. We got some ear drops and put him on a antibiotic for 5 days. He already is feeling much better. I am surprised through this whole week of illness he has not ran a fever.

Please continue to pray for a speedy recovery from his cold and ear infection. We need him to be well for his treatment next week in NY.

We will be leaving a week from today, thank goodness we have another week at home. Yeah!

Hope everyone has a great day!

Love to all,

Mary

Thursday, September 28, 2006 9:13 AM CDT

Good morning,

Thank you all for your prayers, Mitchel is feeling much better. The bump on his face is going down everyday, I do believe it was some sort of insect bite. Anyway, his cough is alot better and he just looks like he feels better today. He is still not back in school, I want to wait and give him system a chance to build back up again before sending him back. I know there were alot of kids recently in his class that had running noses, they are probably all passing it around.

Again, thank you for your prayers.

Love to all,

Mary

Wednesday, September 27, 2006 8:58 AM CDT

Good Morning,

I have a prayer request today, Mitchel has a cold and does not feel very well.

It has been getting worse everyday, if he is not better by this afternoon I am going to take him in to the doctor. He also has a small misquito bite looking bump on his cheek by his ear, it is probably nothing, I am putting medication on it and it has gone down from yesterday.

He has been coughing and not sleeping very well.

Thank you all for your prayers,

Love to all,

Mary

Tuesday, September 26, 2006 12:41 AM CDT

Happy Tuesday,

We have been so busy around here trying to get back to normal. Whatever that is! Mitchel is trying to get over a cold, he has been coughing and has a little runny nose. He missed school yesterday but he went for a little while this morning. I got a call just as I was leaving my women's bible study to pick him up. He seems to be feeling fine now, I know how a cold can make you feel so tired and you just feel better when your at home.

Michael is doing great in school, he loves it so much. Every morning he can't wait to get there.

As we move closer to next week we are reminded of the time in October 2004 when Mitchel was first diagnosed. What a nightmare it was for us. Everything was moving so quickly our heads were spinning. Praise God we have made it this far and we are still standing.

I remember during August and September we were all trying to figure out what was wrong with Mitchel including his doctor here at home. Neuroblastoma is so hard to diagnose and the symptons can come and go for a while. Anyway we are so glad to have those memories behind us now.

Thank you all for your continued prayers, we have been so blessed to have each and every prayer received by God from many friends that care so much for our family.

Please remember all those families whose children are diagnosed with cancer for the first time, about 500 a year diagnosed with NB, and all the familis that continue to fight the battle with cancer.

Love to all,

Mary

Friday, September 22, 2006 1:34 PM CDT

TGIF everyone,

Hope everyone has a great weekend! We don't have a lot planned, it will be so nice to be home and all of us be together again. I am sure in the morning we will have our traditional breakfast, the whole family making pancakes together. While Mitchel and I were in NY this last time we bought a new Mickey Mouse whisk to stir our pancake batter with, both the boys have Mickey Mouse pancake flippers, as they call them. It is something they both love doing as a family, I am sure when they both come home from college for a weekend we will still have the flippers and wisk and we will still be having our pancake breakfast. I just love family traditions!

As far as Mitchel's health he is doing just great. He complained a little about his stomach being upset this morning but still went to school. I gave him some medicine to make his stomach feel better and he was not going to miss his pajama party at school, no way! I am sure his stomach was upset from the Accutane he is taking. This will be his last dose, he has completed 6 rounds, the protocol only calls for 6 rounds but I am going to mention it to Dr. Kushner and ask him if Mitchel should take a few more rounds to be on the safe side. They have had such good results from the Accutane keeping the cancer cells from maturing.

I am so proud of Mitchel going to school and just watching him grow up, he is my hero!

Please continue to pray for all the families who are dealing with their childrens cancer, we have met so many wonderful families and some are going through a hard time right now.

Love to all,

Mary

Wednesday, September 20, 2006 12:40 AM CDT

Happy Wednesday,

We are finally getting back to normal around here. It is great being home!

Mitchel is settling in to school and so far he has made it one day until 2:00, yesterday I picked him up at 11:00 and today at 12:30. His teacher said he kept asking to go home and she wasn't sure how far to stretch him. I know it is hard for him to be gone for two weeks and then return home to a schedule hopefully by the end of the week he will be staying until 2:00. He just loves being home with mommy and I love it too, I have to admit! Anyway is it really going to matter 5 years from now, I doubt it.

I got our airline tickets today to return in October for one week only! Yeah! This is so great to only be gone for a week, I know it will go by fast. But I don't want to think about it right now, we are enjoying being home for now.

Thank you all so much for your continued support and love, we have received several cards in the mail encouraging us to never give up and embrace our faith. You all are so kind to remember us and to keep the prayers coming.

Love to all,

Mary

Sunday, September 17, 2006 8:15 PM CDT

Thank you all for your prayers, we made it home Friday night. After a long wait leaving NYC because of the rain we finally got in 2 1/2 hours late, we were just glad to be home.

We have enjoyed being at home so much already. Mitchel is sooooo happy. He has been playing with Michael non stop.

We will enjoy our three weeks at home, living every minute to the fullest.

Love to all,

Mary

Wednesday, September 13, 2006 3:08 PM CDT

We made it through another day of treatment. Today was the easiest day so far. Just before his pain started the clowns came in and they had Mitchel laughing, it was a great distraction. After they left he had pain but not for as long and not as much. I hope the clowns will be there again tomorrow, it seems to really help and keep Mitchel distracted.

After his treatment we went in the playroom and he got a good hour on the game cube, then we went for a long walk. Mitchel enjoyed stopping by the pet shop and watching the puppies play.

We heard today that Dr. Kushner is scheduling Mitchel to have a 8 week break after his next treatment in October. This is totally based on Mitchel's scans in October, if all is clear then we will not return until December. We know the best thing for us is to take one day at a time and if it happens it happens. Of course we are praying for a long break.

Thank you all for your continued prayers, we love you all,

Mary

Tuesday, September 12, 2006 3:29 PM CDT

Great News!

Mitchel's CAT SCAN came back all clear! I can now breathe again. He will have scans again in three weeks.

We are still waiting to hear from the doctor at home about the stem cell collection, Dr. Kushner has e-mailed him but we have not heard back yet.

Mitchel's pain has been terrible, I am not sure why he is having so much more pain this week, I just hate that. Thank goodness we will be done soon.

Not much else is going on this week, just counting down the days.

Love to all,

Mary

Sunday, September 10, 2006 5:48 PM CDT

Happy Sunday,

We have almost been here a week and it seems like months. Why is the time going by so slow this time? Hopefully this week will go by fast. We are on the morning schedule all week maybe that will change things up a bit.

Mitchel has his CAT Scan on Tuesday morning at 8:00 AM, I have to admit I am a little nervous about the results, I am trying to big strong and keep the faith but sometimes fear starts to creep in. Please pray for a perfectly normal scan.

I did talked with St. Jude Hospital on Friday and they do have alot of stem cells left over for Mitchel, we will decide on whether we want to use them or collect some new ones since Mitchel is NED right now. Mike and I feel that collecting new ones would be the best for Mitchel, hopefully the doctors will agree with this.

We will keep in touch during the week,

Love to all,

Mary

Friday, September 8, 2006 3:39 PM CDT

TGIF,

We are finished with treatment for today, he needed 3 rescues and the pain was terrible.

We are both glad to have the weekend off, he was really happy to have his buddy out today, that is what he calls his IV.

We met the Dutches of York this afternoon and she was very lovely. Right when she arrived Mitchel was waiting with his rose, he walked right over and handed it to her, she then took him by the hand and sat down. They had a great conversation and I took some great pictures of them together. She was very nice and he liked her instantly, he explained to her that he had to leave for the hospital and gave her a big hug. She promised to leave a special book at the front desk for him. When we returned there was a lovely childrens book that the Dutches herself had written called Little Red's Summer Adventure at the front desk. The Dutches wrote a lovely note inside to Mitchel thanking him for the rose. I will post the pictures when I return home, I forget my cord for the downloading.

Mitchel did have his dental appointment this morning and everything went well, no cavities. Yeah!

Dr. Modak and I discussed the stem cell issue and they do think it is a good idea to collect and have them stored away for any future use. The only problem is that we will need to stay here for an additional 4 days for the harvesting. I know Mitchel would rather do that at home, so they are checking into that possibility. I checked with his oncologist at home and there is a place in OKC that does the harvesting so hopefully it will work out for us to do it there.

Hope everyone has a great weekend! Thank you all for your prayers and such encouraging words.

Love to all,

Mary

Thursday, September 7, 2006 7:31 PM CDT

Wouldn't you know it they are starting the 3F8 condensed version next week, we missed it by one week. How lucky for those coming in next week.

Mitchel's treatment today was a little worse pain wise, he needed 3 rescues. After his treatment I decided to go for a long walk and we did not return back to the RMH until 8:00, Mitchel stayed awake the whole time and so I am hoping we can get back on a schedule. Last night we came back here after treatment and he slept until 7:00 then he was up til 1:00 am. Tomorrow we have a 9:00 AM dental appointment, they will be doing x-rays and checking his teeth for cavities. I am also going to swing by the audiology office to pick up a copy of Mitchel's last hearing test. Dr. Kushner really wants me to encourage Mitchel to wear his hearing aides, especially now that he is in school full time. I will be meeting with his teacher when I get back about him wearing them in class.

Dr. Cheong and I spoke today about collecting some stem cells for Mitchel to have stored up in case he might need them some day. There are alot of patients that already have them and I want Mitchel to have them just in case a protocol in the future might require having them. I will hopefully find out something before we leave. This might be something we could do at home if needed.

Tomorrow the Dutches of York, Fergie, will be here and they invited Mitchel to have his picture taken with her. He is very excited to meet her and give her a flower. I told him she was a princess from another country, he wanted to know what a country is. He is always so curious.

Well I think we are going to hit the sack,

Love to all,

Mary

Wednesday, September 6, 2006 1:39 PM CDT

Hi everyone,

Mitchel is finished with his treatment for today, thank goodness. He is sleeping off the pain medicine right now, today was about like yesterday pain wise, he only needed two rescues. He is counting down the days to take his IV out already, that will be on Friday. He was crying this morning about his IV hurting when he put his arm up so we had the nurse look at it, turns out the bandange wrap was too tight. After we rewrapped it he said it felt alot better.

This morning we scheduled his next series of test for the October trip, he will be a MIBG scan, CAT SCAN of the pelvis, abdomen, chest and neck, a MRI of the brain and a bone marrow biopsy. Next week they are only doing a CAT scan of the neck and chest since he had all scans done just 3 weeks ago. Everything is looking good for the trip in October to only last a week, they are very optimistic about having the condensed version of the 3F8 ready by then. It will be so nice for all the families.

We do not have much planned for this week as far as outings, Mitchel's evenings consists of several melt downs and I just have to ride it out because nothing helps until he has the pain medication out of his system. This is usually about 8:00 PM when he is finally back to normal. I pray for patience everyday.

He does have lots of friends so he enjoys playing with them, they all have their melt downs at different times. All of us parents wonder which one will have theirs first.

Hope everyone is having a great week, thank you all for your continued prayers!

Love to all,

Mary

Tuesday, September 5, 2006 1:55 PM CDT

Hello,

We made it safe and sound to NY, this was our best trip yet. Both flights were on time and we arrived at a decent hour to give us plenty of time to unpack and get settled in.

Mitchel has just finished his treatment for today and is sleeping off the pain medicine. His pain today was bad but did not last as long, he only needed two rescues instead of his usual three.

Everyone here is talking about the condensed version of the 3F8 which would only require patients to be here for only one week instead of two. We are all excited about the new plan. Dr. Kushner said it should be in place by the time we return after this cycle of treatment. We also discussed the possibility of going on a 8 week break, but Dr. Kushner said Mitchel is not ready for that yet so we will be returning after a short 3 week break. Dr. Kushner has ordered a couple of tests while we are here this time,urine collection for this Sunday and a CAT SCAN of the neck and chest on Tuesday, Sept 12, just to see if the spot on his neck is still clear, I don't think he is taking any chances. When we return for his next cycle in October he will have a full workup of scans and bone marrow biopsy, hopefully we can squeeze everything in during the one week of treatment and return home quickly.

The weather here is nice, in the 70's. It is nice to see our friends again, Mitchel loves playing with the group of boys that are always here.

Please pray for us to have peace and strength as we journey through the next couple of weeks.

Love to all,

Mary

Sunday, September 3, 2006 5:40 PM CDT

Hi everyone,

We are packing for our trip back to NY. We leave in the morning and I must say we are not looking forward to this trip.

It seems we were just getting into a normal routine with school and seeing all our friends and family again. We are glad it is only for two weeks this time.

We will keep in touch throughout the week to let everyone know how Mitchel's treatments are going.

Love to all,

Mary

Sunday, August 27, 2006 3:33 PM CDT

Hello everyone,

All is well here at the Baughman's. The boys are enjoying school and they are both doing great!

A trip around the world - ALOT OF MONEY

An Alaskan Cruise - ALOT OF MONEY

Baking a cake with a five and seven yr old - PRICELESS!

Guess what we did today, baked a cake, actually two cakes. We have a special guest coming for dinner tomorrow night and the boys wanted to each bake her and her sister a cake. Mitchel wanted vanilla and Michael wanted chocolate, they each made their own with a little help from mom. Watching Mitchel crack the egg is a scream, he gently taps it on the corner of the counter then holds it over the batter and then with one squeeze it somehow ends up in the bowl. Michael has his own technique, he is a pro at this point. It is so much fun spending time with them and listening to all their reasoning for doing things.
They are growing up to be such gentlemen. Their special guests for dinner tomorrow night are Sarah and Laura Schmidt, Michael's teacher from last year and her sister. After church they both called her to ask her favorite cake flavor, it is so funny watching them dial the number and talk to her on the phone, when they are done they just hang up. I don't think they even say goodbye, probably from all the excitement they forget that part.

This will be a busy week for us and we all are hoping it goes by really slow. NY is still pretty far from our minds at this point, we are enjoying being home too much.

However, we know it will be here before we know it. We will slowly start to mention it to Mitchel it seems to work better that way rather than telling him the day before we leave. He knows daddy is not coming this time and Michael has to stay in school.

It does not sound like they clinic has the condensed version of the 3F8 ready yet so we will be there for the full two weeks instead of one. Maybe by the time we return again it will be ready.

Mitchel has not had any major side effects with the accutane other than the terrible headache last Sunday. I did notice his lips were a little cracked this morning but all in all he is doing fabulous!

He will begin his injections this Wednesday getting his body ready for the treatment next week. I know he is not looking forward to that at all.

Hope everyone has a great week!

Love to all,

Mary

Tuesday, August 22, 2006 9:15 AM CDT

Happy Tuesday,

We are finally starting to settle in here at home. The boys are enjoying school. It feels so good to be home and be with my family again.

Mitchel has lost his first tooth, he is so proud of it. I will post pictures soon, he wanted me to take his picture with his tooth missing. I did not even realize he was at the age to loose his teeth yet, it caught me off guard. He looks so cute!

Mitchel has not missed a day of school yet, his teacher and I have decided for me to pick him up at 2:00 everyday instead of waiting for her to call. That seems to be the time he is ready to go home. So far the accutane he is taking has not affected him too bad, on Sunday he did have what seemed like a migraine headache but after taking tylonel and a long nap he has not complained about it again. Thank goodness!

Thank you all for your continued prayer support, we love you all,

Mary

Thursday, August 17, 2006 12:51 AM CDT

Hello everyone,

We are finally settling into a routine here at home. The boys are trying to adjust to their new bed time, they love to stay up late.

Yesterday was their first day at school, Michael went right in all smiles of course but Mitchel had a different first day experience. He started out crying all the way in and then would not let go of daddy. After talking for what seemed like forever he finally accepted the fact that there was no getting out of going to school. I sat down next to him at his table and he started to play with some toys. The boy next to him was very excited to be at school and was a great encouragement to Mitchel.

After a few minutes we said our goodbyes and left, by then he was playing and smiling, thank goodness. I did not get a call until 2:15 just 1 hour before school is out so he did pretty good for his first day. His teacher told me his eyes were looking very tired and he had asked when he could go home. This morning he was just fine going to school, walked right in and found his table then waived goodbye. So far no call yet!

We just received a call from Dr. Kushner's office and all tests have come back SHOWING NO SIGNS OF NEUROBLASTOMA!!!! Those results are from his bone marrow biopsy, MIBG and his CAT SCAN of his neck, head, orbitz, chest and abdomen. The only test that is not back yet is his urine tumor marker test. They will call again when that result is in.

I am enjoying having some time to myself while the boys are in school. There are several home projects that I have put off for so long, it is great to have time for that now.

I want to say thank you so much to someone very special who has blessed our family so much. She has sent cards, presents and has continued to encourage us everyday with her love and support. Linda Duke you are too much, I just received my gift certificate and I cannot wait to get in and enjoy my message. The boys know you because we have told them how wonderful you are and we all thank God for you being in our lives. Thank you again so much for everything!

Thank you so much all you prayer warriors, we are truly blessed to know and believe in the power of prayer.

Love to all,

Mary

Tuesday, August 15, 2006 9:53 AM CDT

Home Sweet Home!!!

We made it home last night around 11:00 pm. We had to fly into Bentonville, AR and it is about 2 hours from where we live. We appreciate Tyson Foods for letting us tag along on their beautiful jet. When we got on the plane Mitchel had a stuffed animal and a snoopy card waiting for him as well as his dinner. He was very excited about getting to ride in style.

I cannot tell you how wonderful it feels to be back home again. It feels like we have been gone for a year, the whole summer is gone and now it is back to school. The boys are excited about getting school supplies and ready for their first day tomorrow. This will be Mitchel's first time to attend all day school, we will just have to wait and see how he does with that.

It is HOT here! Hopefully it will cool off soon. The boys are so excited to hit the pool this afternoon. Mitchel was ready to jump in first thing this morning, he has missed swimming so much.

I spoke briefly with Dr. Kushner just before Mitchel's bone marrow biopsy and he said the MIBG looked clear but the final report was not in yet. Mitchel's CAT scan was yesterday and bless his heart he woke up at 7:15 AM and drank all his contrast in 10 minutes, it was 12 ounces. I am so proud of him, he did just great for the scan only getting a little sick feeling at the end. I ended up doing his urine collection on Monday morning because we were having so much fun on Sunday I forgot all about it, oh well they understood.

It is hard for me to express all my emotions that I feel, having to be gone for so long and then returning back again in three weeks, I know one thing for sure I AM TIRED AND I NEED A BREAK! Well now that I got that off my shoulders I must march forward and enjoy my time at home and NOT think about returning to NY for now.

Thank you all for your continued encouragement and prayers,

Love to all,

Mary

Friday, August 11, 2006 12:19 AM CDT

Happy Friday,

Let me start by saying sorry for not posting the time of Mitchel's MIBG scan. It was this morning and from what I could see everything looked great.

I was determined not to worry myself so much this time and just trust everything would be okay, I guess it worked because I did not even think about it until this morning that I had not posted a prayer request for this morning's scan.

Anyway, it was nice to not to worry and just have peace.

Mitchel is feeling so great, his counts look beautiful:

Platelets - 190,000
Hemoglobin - 12.2
White bld count - 5.9
Red bld count - 4.14
ANC - 3500

We have managed to make arrangements for a Corporate Angel flight on Monday, we are flying with Tyson Foods. We will flying into Fayetteville, AR and Mike will pick us up. This time was perfect. I was really not looking forward to the airport situation right now with all the extra waiting in line and the security check in situation so this will be great. This will get us home a day early and we are so thrilled to have one day before school starts to get things together for the boys. Mitchel is excited about starting school and so is Michael.

Tomorrow we are going to Dorney Amusement and Waterpark, it will be so much fun. Then on Sunday we have been invited back to share a day at the beach with a wonderful family from last weekend. They are providing our transportation and will be serving us lunch. There are 3 families going it will be fun.

Mitchel will have his CAT scan on Monday then his bone marrow biopsy before we fly back.

Hope everyone has a great weekend!

Love to all,

Mary

Wednesday, August 9, 2006 1:35 PM CDT

Happy Wednesday,

I just got the most exciting news from Dr. Kramer, she told me they are working on a new protocol for the regular dose of the 3F8 to be administered at a higher dose for everyone so the patients can have their treatment done in a weeks time instead of the normal two weeks time. This would also give us 4 weeks off instead of 3.

They may have it set up by the time we return in September, this would be so great. I guess it has to be approved by the FDA first. The higher dose would only be 2x the dose which Mitchel had at the beginning of his treatments here and did pretty well on that.

So on for todays news, Mitchel had a much better day, pain wise he had less and did not last as long. He still needed 3 rescues and is sleeping off the dilaudid now.

Yesterday's treatment was pretty bad his pain was the worst for this cycle. He was pretty out of it last night so we stayed up in our room most of the night. We did walk down to blockbuster and he rented the movie Stripes about the racing zebra. After eating dinner we both snuggled in to watch the movie it was really cute, all the animals talked, as you know Mitchel loves animals.

In the playroom yesterday they had their annual talent show, Mitchel signed up all by himself to do his famous hopping on one foot, it was the cutest thing. I am working on getting a copy of the video it is Priceless!

After his performance he took a big bow and decided the audience had not seen enough and starting hopping some more and received another round of applause. He was so proud of himself as was I.

The weather has finally cooled off a bit. Hopefully it will stay nice for this weekend we are suppose to go to the waterpark this weekend.

Hope everyone is having a wonderful day!

Love to all,

Mary

Monday, August 7, 2006 7:29 PM CDT

Happy Monday,

This has been such a long day, we are glad it is almost over. Mitchel's treatment went ok today, he still is having alot of pain each time. I am so glad it only last for a short time during his treatment, and then falls asleep.

Tomorrow we are going to have a ride on the double decker bus around town. The RMH is taking everyone, I think Mitchel will enjoy the ride as long as we sit on top.

We are both hoping that the week goes by really fast so we can get back to our family. I already had to discuss our return dates the the social worker so she can get our reservations in for the RMH. We will be returning on Labor day, September 4 for another two weeks. I asked Dr. Kushner if he wanted us to just wait another week and come since they will be closed on Monday and Mitchel would be missing a day of treatment, but he said no, he wants us to not wait a week. I was sure hoping he would say yes and give us an extra week at home, but oh well we are troopers as usual.

Hope everyone has a great week!

Love to all,

Mary

Sunday, August 6, 2006 9:27 PM CDT

Happy Sunday,

Mitchel and I are alone now in NY, Mike took Michael back this afternoon. It has been a pretty lazy day, we really had a great time yesterday at the beach.

Tomorrow will begin Mitchel's second week of antibodies, we cannot wait to get it over with. We will definately be taking one day at a time. Mitchel has been complaining this week about getting his shots, even with the numbing cream he just hates to get them, he only has 5 more to go.

Michael was really happy to go home and spend a week with Grandma. He was really trying hard to hold in the excitement because he did not want to upset his brother. Michael is so thoughtful about those kinds of issues, he would never want Mitchel to feel left out.

We will be counting down the days all week. Only 9 more sleeps to go before we return home.

Love to all,

Mary

Friday, August 4, 2006 2:33 PM CDT

We have made it through yet another week of antibodies. It was painful for Mitchel all week and emotionally painful for Mike and I all weel as well. Today was the worst day for his pain. It seem to linger on and took a while before he was able to rest and fall asleep.

He had a melt down twice before starting his treatment. While I was checking in at the front desk Mitchel was on the floor in between my legs crying and kicking. I had to tell him no about going to the gift shop and he was not happy about that at all. Then he threw a fit about taking his tylenol, usually he takes it pretty quickly. He must be feeling every emotion possible at this point. He continues to cry out that he wants to go home.

On a good note he is excited about his teacher this year, he has been talking about it, this makes me feel much better and have less anxiety about him starting school again. They will not be offering half day kindergarden this year so we will just have to wait and see how long he will last going each day all day. We have decided to retain Michael back in 1st grade because he missed so much of kindergarden, he seems to be fine with that decision. In the long run I know he will benefit from our decision.

Thank you all so much for your continued prayers, it has been such a long journey and we could not have made it this far without all your support.

I was counting the days that we have been here, it is getting close to 40 days by now. I will one day soon be looking back and gather strength from these last few weeks, it has been hard but we will persevere.

Love to all,

Mary

Thursday, August 3, 2006 3:44 PM CDT

We received some great news today from Dr. Cheuong, he said Mitchel did not relapse and we will be able to have an 8 week break after the next cycle of 3F8.

Mike and I were so encouraged to find out and to hear this from the doctors. They will be watching Mitchel's left clavical area closely with scans just to be on the safe side.

We will be returning in September for another round of 3F8 antibodies and then we will have an 8 week break in between the next cycle of treatment. This is such great news, we have been waiting for this a long time.

Mitchel made it through yet another day of pain with his treatment. He is resting now and seems to be feeling alot better. The pain was not until the end of the treatment and he still needed 3 rescues.

Hope everyone is staying cool it is so hot here. We are going to the beach on Saturday, hopefully it will be cooler there.

Love to all,

Mary

Tuesday, August 1, 2006 10:19 AM CDT

We are all so happy yesterday is over, it was his first day back on the 3F8 antibodies. The pain experience for Mitchel was pretty harsh, he needed 3 rescues and was screaming out. It has been a while since we have gone through this and I know it took a toll on all of us. So, like a said we are glad that yesterday is behind us.

Team Baughman is ready for another day of Mitchel's treatment, we know if will be hard again to see Mitchel in pain but we also know that we will make it through this, God is our partner in this whole thing.

We are on the afternoon shift this week so we all have the morning together to just relax and take our time.

As we all know that the cancer world comes with unexpected turns and many times not knowing what is going to happen next, I say all this because yetserday Mike took Mitchel to his regular radiation appointment and Dr. Wolden met up with them to discuss the fact that in her opinion after taking a second look at all the previous radiation treatments she would recomind not continuing on with the total 17 treatments. Instead she wanted to do only one more, her reason is because Mitchel has had radiation to this same spot a few months ago and then again at St. Jude a year ago and she was concerned that continuing on with 10 more could cause him to loose the use of his left arm. There are several nerves that lay in the area of the radiation site and she was concerned about damaging them. So yesterday he did not have radiation and this morning was his final treament. He had a total of 8 treaments this time.

Mike and I have been praying all along for God to give the doctors involved with Mitchel's treamtment wisdom. We feel that God has answered our prayers and we have peace about the decision to stop the radiation treatments.

Well we better go Mitchel's treatment is going to start soon.

Love to all,

Mary

Wednesday, July 26, 2006 5:06 PM CDT

Good afternoon,

We are all doing very well here NYC. Mitchel's radiation treatments have been going very well. He is such a champion with laying on the table with the mask on. It doesn't bother him at all and before we all leave the room he gives us a thumbs up.

Daddy will be arriving tomorrow and we cannot wait. The boys have been counting down the days for him to be here.

Last night Karen and Nick asked us to join them for dinner, they ordered Indian food and it was delicious. I have always wanted to try it but had no idea what to order. We sat on the terrace and had a great time, thank you guys so much. The boys made smores last night with a group of volunteers, they were great too.

Tonight we are going to the house of pottery for the kids to work with arts and crafts and then a pizza party. They are excited about going, I cannot wait to see what they pick out to paint.

Mitchel tested HAMA negative so he began his injections for his antibody treatments to start on Monday. He will have 17 injections total. They decided to check his counts since he is going through radiation and they looked beautiful.

platelets - 263,000
hemoglobin - 12.6
ANC - 4600

The boys have received several packages in the mail and a few cards, thank you so much everyone who has sent something. Thank you Linda Duke for sending the Blockbuster gift card, I cannot tell you how excited the boys were to get it!

Love to all,

Mary

Monday, July 24, 2006 9:39 AM CDT

Good morning,

Mitchel has completed his radiation for the day, his appointments this week will be at 9:00 am everyday. It only takes about 4 minutes each time so we have plenty of time to enjoy the rest of the day.

Yesterday with visited the Brooklyn Aquarium it was so nice, the boys enjoyed it so much. We went with a group from the RMH. After the Aquarium we went to a pizza place in Brooklyn and had reserved seats outside for us, it was a very kid friendly place to eat. They had balloons for the kids and roses for the moms. We ate pizza, homeade sandwiches that were very tasty. After eating we ordered whatever we wanted for desert, the boys and I ordered ice cream it was yummy! After eating our deserts a group of firemen came by on their fire truck, the boys loved it, they got to get up in the driver's seat and do whatever they wanted. I will post pictures soon. Then after taking lots of pictures we were visited by a Priest who came to bless all the children. It was very nice, both Mitchel and Michael got a blessing. The day continued with a clown and magician coming to see the children, the show kept all the kids laughing and having a great time.

We returned back to RMH late in the afternoon. The boys loved every minute of the outing.

Hope everyone is having a great day! The boys and I are counting down the days when daddy comes, three sleeps and he will be here!

Please continue to pray for all the children that are going through their treatments. Please remember Mitchel also and pray for his complete healing! Please take a moment to thank God for his wonderful blessings we all have each day.

Love to all,

Mary

Friday, July 21, 2006 7:38 PM CDT

Hello everyone,

We are enjoying our Friday night, not doing much just hanging out at the RMH. We just walked back from Maggie Moo's Ice creamery with our friend Karen, she is here with her teenage son who also has neuroblastoma. It has been raining here all day.

Mitchel's treatments are going good, it only takes about 5 minutes each time so we are pretty much in and out and then have the whole day to play.

We are going to the Brooklyn Aquarium on Sunday with a group from RMH. Other than that it should be a pretty quiet weekend.

Well hope everyone has a great weekend,

Love to all,

Mary

Our address here is:

Mitchel Baughman
Ronald McDonald House
405 E. 73rd Str.
Rm 407
New York, NY 10021

We will be here until 8/15

Thursday, July 20, 2006 2:21 PM CDT

Hello everyone,

Mitchel is doing great! Full of energy as usual. We are still waiting for his 1:00 pm appointment with radiation, their machine went down and so they are a little backed up. He is ready and know all about the mask that he will have to wear for every appoinment.

I just spoke with Dr. Kushner and he said they want Mitchel to start his 3F8 on July 31, this means he will have radiation and antibodies for two weeks. They said he would be okay to do both in the same day so I am hoping he will do radiation first then antibodies. The dilaudid makes a little grumpy and I am not sure how well he will do if he goes into radiation after getting dialudid.

He will start his GMCSF injections on July 26 for 17 days. I think he has enjoyed his break from shots, I am sorry he will have to start them again. For how he will hold off taking the accutane until he finishes this cycle of 3F8.

I am still waiting to find out when they want to do scans again before we can book our trip home, hopefully they will let me know something soon.

That is about it for now, they are ready for him in radiation.

Love to all,

Mary

Wednesday, July 19, 2006 1:02 PM CDT

Hello everyone,

We are trying to stay cool, it is sooooo hot here! Mitchel is feeling great as usual and enjoying his time not having any appointments at the Big House (hospital).

It has been really nice just having two days with no appointments, the boys and I have been so relaxed and recharging our batteries for the upcoming radiation treatments.

Yesterday we found a park just a few blocks away that has sprinklers and a really nice playground, the boys just loved it. I found a bench under a big tree and just enjoyed watching them play. Today we went to Barnes and Nobles to spend our gift certificates, Michael found a box of magic tricks and Mitchel got a golf game. I was looking for a book that could really feed my spirit and I am anxious to dig into the one I found. It is authored by Joyce Meyer, she is one of my favorites because she does not sugar coat anything and she has endured so much pain on her past life but yet has overcome it all.

We then walked to Uno's pizza, then got Ice cream. On the way back the boys stopped at their favorite place, blockbuster video, they were happy to find the movies they wanted. Mitchel loves the Backyardigans and Michael loves Spongebob.

Anyway we are enjoying every minute together, Mike will be coming next Thursday for a week, we are so excited.

Mitchel's radiation appointment will be at 1:00 tomorrow, please pray for the technicians running the machine to have wisdom and that Mitchel will be able to wear the mask for his appointment. I know he will do it, it will be hard at first but he is so brave.

Thank you all for your continued prayers, we love you all.

Since we will be here for a while anyone who wishes to send a card or something to the boys can do so at, I know they would both love anything:

Mitchel Baughman
Rm 407
Ronald McDonald House
405 E. 73rd Str.
New York, NY 10021

Love to all,

Mary

PS. Please also remember to pray for me to have complete peace tomorrow as I take my baby in for the radiation treatment, I know I will be a little anxious about it.

Monday, July 17, 2006 8:36 PM CDT

Hello everyone,

We have had such a long day today. It started out with Mitchel's radiation appointment, we met Dr. Woldon and did a consultation about his upcoming radiation. We have decided to go forward with the radiation plan, it will consists of 17 days of radiation, one session each day, to his left neck area. They had to made him a mask to wear for the radiation sessions because the neck area can be tricky and the mask will help him hold very still. After they put the mask on his face it clamps down to the table on both sides and at the top. Can you imagine laying still on a table with a mask on that is clamp down to the table? Mitchel was again so brave today to endure the 45 minutes of having the mask on letting the technicians make all their necessary x-rays and marking to get him ready. He will start his sessions on Thursday.

I will be here for at least another 4 weeks so he can finish his radiation and then we should have a week off before starting the 3F8 again the week of August 21. We are still waiting for the doctors to let us know when Mitchel will finish his last two doses of accutane, they are suppose to meet on Wednesday.

In our meeting with Dr. Woldon, the radialogist, she went over all the pro's and con's about doing radiation. This will be Mitchel 3rd time to have radiation to this area. He will need a higher level of radiation this time because of the relapse, they really want to use this window of opportunity to get rid of any microscopic cancer cells trying to hang around in that area. He will have a level of 30 gray this time instead of 21 gray like he had before, Dr. Woldon explained that there is a permanent side effect in that his left clavical bone will not continue to grow as normal and he will have one shoulder broader that the other. When we asked her what are the chances of this happening she said it was 100%.

We are praying against that immediately and we know that all things are possible through Jesus Christ. Mike and I were pretty devastated this morning, it would be hard for any parent to hear those kinds of things about their child. We believe that this is what Mitchel's needs right now to get rid of any residual cancer and so we are going forward with it.

So then we finished with that appointment and went to clinic to have blood drawn for HAMA test, this will tell us if he can continue with the 3F8 antibodies or not, anyway after sticking him twice and as we were leaving the nurse came up and said they had put the blood in the wrong tube and wanted to know if it would be alright to stick him again. Of course I said NO! and we left. Enough is enough for one day and we would just wait to do the test next week.

Like I said it was a very stressful day!!!

Tonight the RMH had a wonderful party for the kids and dinner for us all. It was a magical night party, they had some really cool arts and crafts for the kids. The boys were thrilled! Tomorrow and Wednesday we have off, thank goodness I am ready for a break. We have heard about a park that has sprinklers down the street so we will try that tomorrow.

The kids amaze me so much how they bounce back and keep smiling. It is unbelievable.

Well I am not excited about staying here for another 4 weeks, but I know this is what I have to do. God will see me through this just like he has seen me through so much. I have been encouraged by the most wonderful people here and at home, God has truly blessed me with friends that I know have been sent my way through him. I feel so weak at times, like I cannot go on then amazingly God gives me comfort.

Thank you all for your continued prayers, we have been so blessed to have all you prayer warriors out there.

Love to all,

Mary

Friday, July 14, 2006 1:50 PM CDT

IT'S A MIRACLE!! THANK YOU JESUS!!!

I met with Dr. Kramer from the NB team this morning and the pathology report shows the lymph nodes were all mature ganglioneuroma which indicates no active cancer cells. She explained that the cancer started to grow then quickly matured and died off. He will NOT GET CHEMO AT ALL THEY ARE PUTTING HIM BACK ON THE 3F8 ANTIBODY TREATMENT WHICH IS WHAT HE WAS ON BEFORE ALL THIS HAPPENDED. They do want him to have some radiation to that spot and he has an appointment on Monday morning to get that started, then he will start on 3f8 antibodies. As I think about all that has happended over the last few days I know and believe this is a miracle from God.

The surgeon has no explanation of the swelling that caused him to remove the port. They could not find any evidence of a blood clot on any test they did. We believe God already knew that Mitchel would not need the port for chemo and it was not going to stay in his body.

My prayer has always been for complete healing and a chance to get our lives back to normal. We are continuing to pray for this. Thank you all so much for all you love and support. We all believed together for this miracle and it has been answered.

Love to all,
Mary

Thursday, July 13, 2006 8:12 PM CDT

Hello from Ronald McDonald House,

We are finally back in our room here. We did not waste any time getting back into the parties, Yahoo had a Lual on the terrace. The boys had a great time doing the limbo, making sand art, eating pizza and ice cream. They gave each child a goodie bag filled with fun stuff. It was so good to see Mitchel smile and dance around.

Dr. Laquarglia came by to see Mitchel around 4:00 this afternoon and was pleased with they way he has improved over the last few days. His swelling is almost completely gone. He also said they just don't know what caused the swelling, all tests show no evidence of a blood clot. So we will probably never really know the true cause, we are just so glad that nightmare is over. He will need to be elevated at night for at least 5 more days. They stopped his blood thinner thank goodness, I was not wanting him to stay on that.

Mike made it home this afternoon and boy was he glad to be home. I know he is exhausted and competely drained emotionally and physically. We all need a good rest.

Mitchel has an appointment tomorrow with the NB team, not sure what about exactly, hopefully it will be about when we can go home and what is next for Mitchel.

Thank you all so much for all your prayers. God sent my cousin to us today I cannot tell you how much she helped me and she was such an encouragement to me when I so desperatly needed it. I had no ideal she was even in town, she called last night and told me she wanted to come by today before she returned home. Thank you LeeAnn for taking the time for us today.

Love to all,

Mary

Thursday, July 13, 2006 11:38 AM CDT

Good morning,

We are doing fine, Mitchel got up around 8:30 and is feeling much better. The swelling is almost gone completely.

My cousin is here visiting from Tulsa and came by before going back home today, it is sure nice to see a face from home. Mitchel has been talking her ear off about all his grow animals.

We are still waiting to get out of the hospital. Hopefully it will be soon, Michael is waiting for us over in the other playroom. He cannot come in the inpatient side because he is not 11 years old. We all went to the cafeteria last night so the boys could have some time together. They enjoyed that so much.

Mike left bright and early this morning. Mitchel was really sad but is doing great now.

The MRI from last night came back negative for blood clots, we are still waiting on the final word from the surgeon on what time we can get out of here. Dr. Kushner is waiting on the pathology reports to come back which will give us an idea of the next step for Mitchel as far as chemo. We will wait patiently and pray for peace and comfort.

We will keep you all informed as we know something.

Love to all,

Mary

Wednesday, July 12, 2006 10:06 AM CDT

Good Morning!

God has answered so many prayers, Mitchel is feeling so much better this morning. His swelling has gone down alot in his neck, his face is still puffy but the doctors are very encouraged. We have gone down to the playroom already this morning and he has been keeping us all busy playing. He has laughed a little and been smiling, I cannot tell you how much this brightens our day to see his smile again.

Mike is planning on leaving tomorrow he has stitches in his mouth from a few weeks ago and they are really starting to hurt. We have been dealing with so many issues at once, God has given us the strength to go on each day. It has felt like an uphill climb for several days, but we are so encouraged today with Mitchel feeling better.

Michael just loves playing in the playroom at the clinic just a few doors down. He has been there for 3 days straight all day, we have tried to get him to come with us when we leave for a break but he wants to stay and play. They really make him feel welcome and play with him all day. They have an awesome program for the kids.

Dr. Laquaglia said we could get out tomorrow if the swelling continued to go down. As far as the blood clot they are still not sure if that is what caused the swelling and will be ordering a scan today for further investigation. The main thing at this point is Mitchel is feeling much better.

Thank you all so much for your prayers.

Love to all,

Mary

Tuesday, July 11, 2006 1:36 PM CDT

UPDATE: 10:00 pm
Mitchel is now inpatient and the doctors took out his port. I left the hospital about 45 minutes ago to return here to Michael and he was pretty miserable, very uncomfortable. He started to run a fever this evening so they gave him some tylonel. We spoke with the surgeon tonight and he is still assuring us that the swelling should start to go down by tomorrow and that the fever can be from surgery, his body healing. Mike and I are still very scared and we continue to pray that God gives anyone involved in Mitchel's treatment tremendous wisdom and knowledge of what to do. I will not feel better until the swelling goes down, he just looks so sad. Mike stayed with him tonight and Michael and I will go in first thing in the morning. My strength is coming from above, there is now way I can continue to go on my own. Thank you all for your prayers.

UPDATE: Mitchel is in surgery right now having his port removed, Dr. Laquaglia feels that the swelling is from a blood clot somewhere in the chest. They will be admitting him into impatient and keeping a close eye on the swelling. They are expecting the swelling to go down by tomorrow. Thank you all for your prayers! We have needed them so much today. We will keep everyone posted on his condition.

Hi everyone,

We have a prayer request for Mitchel, we have been at the hospital all day running tests he has been swelling up in his chest, neck and face and they are trying to find out what the cause is.

He is very uncomfortable and not feeling his happy self. Mike and I are very worried and praying that the doctors will find out something soon.

They have talked to us about possibly there being a blood clot and they will need to remove the port they put in yesterday. He is being prepared for surgery.

We will update again when we know something.

Love to all,

Mary

Monday, July 10, 2006 7:19 PM CDT

Hi everyone,

Mitchel is doing great! He went in for surgery earlier than expected because of a cancellation this morning. We are back at the Ronald House and he is resting or I should say we are trying to get him to rest, he is playing the game cube with Michael. Everyone was amazed at the hospital how well he was doing after the surgery, we are so thankful that he did not have to stay inpatient tonight. We feel he will recuperate much better here with Michael.

The surgeon took out 10 lymph nodes, they looked at two and they tested positive for neuroblastoma. We knew there was a great chance of this so we were not surprised. He got his new port put in and we should find out something hopefully tomorrow about when he will start chemo and when we can go home.

He will need to return to the clinic on Wednesday for another x-ray of his chest which is routine after surgery.

We are both so proud of how brave our little man is. He continues to endure so much. He always talks about what he is going to do when he gets older and how big he will get.

Mike and I are both exhausted it has been a very long day. We will all be resting tomorrow here at the Ronald.

Thank you all for your continued prayers throughout this journey, we both had peace today and comfort.

Love to all,

Mary

Sunday, July 9, 2006 5:33 PM CDT

Hi everyone,

We made it back from our little weekend getaway. We ended up in Pennsylvania at the Great Wolf Lodge. It was so great to relax and watch the boys have so much fun. Mike and I also enjoyed the water slides, they were pretty exciting. Mitchel officially graduated from the baby slides to the older kids slides. He went over and over again, Michael enjoyed the slides that went very fast. Too fast for Mitchel he got all the way to the top and decided he wasn't ready yet, maybe next year he said.

It is amazing how beautiful it is just a few hours out of the city. We had a wonderful time.

I will be posting some pictures from our trip soon.

Tomorrow will be here before we know it. Mitchel's surgery is scheduled for 2:45. Mitchel will not be able to eat or drink anything until after his surgery, bless his heart is will be very hard for him to wait. We have decided not to tell him anything about the surgery because we do not want him to worry and be anxious. He will have lots of questions when he wakes up.

Well we are all pretty tired so I will update again tomorrow. Thank you all for your prayers, we love you all,

Love to all,

Mary

Thursday, July 6, 2006 1:31 PM CDT

Hi everyone,

We finally made it here last night around midnight. Our flight was delayed out of Tulsa for 3 hours. We are all glad yesterday is behind us.

Mike and I met with the surgeon this morning and we both felt very comfortable with him, he is very nice. He showed the spot on the cat scand and on the MIBG scan, he will be going in on the left side, right at the crease between the neck and shoulder area. He will be going close to alot of nerves and the jungular vein, but he was confident about this being a minor procedure. They will biopsy the spot right then just to make sure it is cancerous, if it is positive for cancer they will put a new port in, if it is negative they will close up and make a new plan. As you all can imagine we are still praying that the spot is not cancerous and he will not need chemo or radiation. But even so if it is cancerous then we will begin chemo and the port will be needed for that.

We are leaving tomorrow for our weekend getaway, we are all excited about it.

Mitchel's surgery is scheduled for 2:00 pm on Monday.

Thank you all so much for your prayers, we appreciate them so much.

Love to all,

Mary

Monday, July 3, 2006 9:17 PM CDT

Happy Monday,

As you can see from the new pictures the boys truly enjoyed their early 4th celebration at Grandma's and Papa's Baileys. They lit so many fireworks this year, it was one right after the other. It was so great to see them both enjoy their best 4th of July celebration ever.

They went swimming and fishing and got to spend alot of quality time with their cousins and aunts and uncles. Tonight Mike and I took the boys golfing, Mitchel's first time on a real golf course. He loved it and both of the boys did really well for beginners. Daddy had to be really, really patient but he survived, they were really cute trying to hit the balls.

We will be packing and resting tomorrow getting ready for our trip. We have decided to take a little trip this weekend to a waterpark in Riverhead, NY. It is close to Long Island and the Hamptons. The waterpark looks really exciting and the boys are thrilled. Hopefully we won't get too lost trying to get out of Manhatten.

Hope everyone has a great 4th and we will be updating when we arrive in NY on the 5th. Speaking of the 5th I have asked anyone who wants to participate in a day of prayer for Mitchel can do so anytime of the day on Wednesday. We are asking for wisdom for us and the doctors, Mitchel to be comfortable and strength during this trip, Mike and I to have complete peace and most of all Mitchel's complete healing.

Thank you all so much for all your prayers.

Love to all,

Mary

Wednesday, June 28, 2006 10:23 AM CDT

Hello everyone,

Mitchel is doing great! He has so much energy and excitement these days. He has truly shown us all how to live life to its fullest. He enjoys everyone minute of everyday.

Finding out about the new spot a few weeks ago on Mitchel's MIBG scan was a huge blow to us all. I have spent many hours praying and asking God why? I was restless for many days trying to figure out what we are going to do. I found myself thinking if only the doctors could come up with something to make it all better, then I started to realize that my faith was in them and not in God. After seeking God's answer and guidance I have found peace and strength to carry me through this. Mitchel's life is precious to God and he loves and cares for him each and everyday. I am so encouraged by what I read in the bible and how God offers his word to give me hope and so much peace knowing we will make it through this. I thank God for his mercy on my family we have all been discouraged and felt unbelievable pain at times, we all are seeking God and standing on our faith knowing he will always be there for us. We continue to believe Mitchel will be completely healed on earth.

Thank you all so much for your continued prayers. I would ask that anyone who wants to participate in a special day of prayer for Mitchel can join us on Wednesday July 5. There is no specific time because we want prayers for Mitchel all day long. This is the day we are taking him back to NY.

Prayer request:

1. That the spot will be gone, Mitchel will be completely
cancer free.

2. Safe travels to NY for July 5

3. Guidance and wisdom as we meet with the doctors.

4. Praise for the doctors who do such a wonderful job and
all their staff.

Psalms 86: 5-7

You are forgiving and good, O Lord, abounding in love to all who call to you. Hear my prayer, O Lord; listen to my cry for mercy. In the day of my trouble I will call to you, for you will answer me.

Have a blessed day!

Love to all,

Mary

Monday, June 26, 2006 1:19 PM CDT

Hello everyone,

We have been away for a few days and have enjoyed every minute of the day. We started off going to Branson on Thursday with our family, my mother is here visiting from California, we stayed in Branson until Saturday and then we drove to lake and stayed Saturday and Sunday. The boys have enjoyed being with their Grandma Elizabeth.

Mitchel and Michael just loved Branson, they were excited about all the miniature golf courses, I was too they really had some cool courses there. They got to see their cousins and swim with them all day.

We will be leaving for Grandma Baileys on Friday for a fourth celebration in Kansas. Mitchel is feeling so great he looks so good too.

We have received so many wonderful and encouraging messages on his website, thank you all so much. It is so wonderful to know you all love and care for us so much.

We will be leaving for NY on July 5th, we are all going and Mike will return after a week. We are still not sure how long we will be there, but however long it takes we will continue to have faith and believe that Mitchel is in God's hands and we will trust in him.

Please pray for Michael he has come down with a 24 hour bug and is not feeling very well.

Hope everyone has a wonderful week.

Love to all,

Mary

Tuesday, June 20, 2006 7:23 PM CDT

Hi everyone,

We just heard from Dr. Kushner about the bone marrow biopsy and they are CLEAR!!!!

THANK YOU JESUS!

We will be scheduling our return trip to NY for the surgery and possibly radiation. The surgery is scheduled for July 10 and he said we should plan on staying for about 10 days.

We are soooo happy to hear this news.

The new pictures in the slide show are from the Prom they had at the hospital. In the latest people magazine, with Taylor Hicks from American Idol on the cover, there is an article about that event at the hospital. As you can see from the pictures the boys had a great time.

Thank you all so much for your continued prayers and such inspiring messages on the site.

Love to all,

Mary

Monday, June 19, 2006 1:32 PM CDT

Happy Monday,

We decided to head for the hills at Papa's ranch yesterday. The boys have been having a ball, lighting off their fireworks, swimming and playing with their nephew Tristan.

We are still waiting to hear from Dr. Kushner, it is so hard to wait. I am on pins and needles waiting for the phone to ring.

Hope everyone had a great weekend and dad's had a great Father's day.

We will keep you all posted as soon as we find out something new.

Love to all,

Mary

Saturday, June 17, 2006 5:21 PM CDT

Hi everyone,

Hope everyone is enjoying their weekend. We went to grandma's today and the boys had so much fun. We stopped and picked up some fireworks the boys can do in the back yard. The love smoke bombs, I am sure our neighbors just love them too! hehe!

I have been filled with so many emotions, it has been difficult trying to sort through them all. I keep believing that God is leading us and we are continuing to trust in him. I am taking one day at a time, just enjoying our time at home.

Mitchel has been feeling great, he looks so good. It is so hard to understand that he has cancer growing again inside of his beautiful little body.

We should hear from Dr. Kushner on Monday concerning the bone marrow biopsy. It is so hard to wait.

Please continue to pray for Mitchel's complete healing.

Love to all,

Mary

Thursday, June 15, 2006 9:45 AM CDT

Hi everyone,

We made it home last night around 10:00. I am really glad that yesterday is over and we can put it behind us now. The whole trip home was nightmare. It took several phone calls to American Airlines to allow us to pay the $100.00 pentalty and not the price of a new ticket, which was over $2600.00 for all four of us, to change our flights from Friday to yesterday but finally we got it done and rushed to the airport. Our flight was delayed on the run way which made us late for our connecting flight in Chicago, Mike had to run through the airport to ask them to hold our next flight. Mitchel had wet the seat while he was sleeping and was wrapped in a blanket so I was trying to carry him and push the stroller and keep Michael from wondering off and rush to the other terminal all at once. Mitchel decided to have one of his break downs because we did not have time to get a cinnamen role, but we made it!

Like I said thank goodness yesterday is over and we can go forward.

I certainly have mixed emotions about being home early and not finishing the treatment. Mitchel is thrilled to be home, so I will focus on that.

We met again with Dr. Modak before leaving the hospital and the surgery to remove the lymph node could not be scheduled until July 10. Because of the chicken pox exposure we could not have the surgery any earlier since he would have a chance of breaking out with the virus during a two week period. We are praying that he won't get them.

The bone marrow biopsy was done yesterday morning and the results won't be back until Monday, the doctors really do not expect to find anything. The plan is to do the surgery and then radiation with low dose chemo for several rounds. After that they will reevaluate him and put him on an appropriate protocol. They have already mentioned that he could be a candidate for the new vaccine coming out in August. This will change if they find NB in his bone marrow. They said he would get high dose chemo instead of low dose and not sure about radiation.

I wish we knew more right now but we just have to trust God and let him carry us through this.

We will certainly enjoy our time at home and we will continue to pray for Mitchel's complete healing.

Love to all,

Mary

Wednesday, June 14, 2006 9:25 AM CDT

UPDATE:

The surger cannot be scheduled until July 10 becuase of the chicken pox issue so we are coming home today as soon as we can get our stuff packed and change our flights. Thank you all for your continued prayers.

Hello everyone,

Well we met with Dr. Modak and Mitchel has relapsed with a lymph node in the upper chest area on the left side. It is 1.8 centimeters in size so it is very small and looks like we caught it before it spread to any other parts of the body. We will know if it spread to the bone marrow on Monday, they are doing the procedure now.

Right now they are trying to schedule surgery to remove the lymph node, since Mitchel was exposed to the chicken pox he will have to be in isolation here starting on the Saturday the 17 through the 5th of July so it would be difficult to perform the surgery during that time. We are hoping that the surgery will take place before the 17th.

Depending on the results of the bone marrow will determine the next treatment, if the bone marrow has disease involvement then he will be put on a higher dose of chemo, if it is not involed, which the doctors do not feel like it is, then he would be put on the low dose chemo and possibly radiation.

If we are still here after the 17th then we will have to move out of the RMH so Mitchel will not expose any children to the chicken pox if he does break out during the two week isolation period. As of right now there are not any hotels available for a reduced price, there is one at $240.00 a night so we will have to just trust that is situation will work out because we cannot handle anything else right now.

I know this update is probably confusing but I am not thinking to clearly right now.

The doctors have asked us to wait here to find out about the surgery.

We will update as soon as we know something more.

The good news is that there are options treatment wise for patients with isolated spots of relapse.

We praise God for an isolated spot and not all over.
We praise God for getting us through this far and we know he will continue to bless us with peace and continued strength.
We praise God so many things

Please continue to pray for the doctors as they come up with a plan to treat Mitchel.

Please pray for us to have strength and a clear understanding of what is happening right now.

Love to all,

Mary

Tuesday, June 13, 2006 8:30 AM CDT

UPDATE:

We have not met officially with Dr. Kushner, the CAT scan results are still not in as of yet. However, Mike had a short visit with him regarding the bone scan and it is COMPLETELY CLEAR, perfect scan Dr. Kushner said. He ordered another test for in the morning, this will be a bone marrow biopsy at 9:50 AM. We are still waiting to hear from Dr. Kushner about the CAT scan it may be later today or most likely tomorrow. Thank you all for your continued prayers.

Good morning,

We are still waiting to talk to the doctor but I wanted to share with you a answer to prayer we had this morning with Mitchel.

I know alot of you were up early this morning praying for Mitchel's scan this morning and also praying for him while he was trying to drink his 8 ounces of contrast. Well let me tell you he was covered by all your prayers, we woke him up around 5:50 to get started on the contrast drink he had one hour to finish it, he first started to move way down in the bed not wanting get wake up. Finally got up at 6:00 and drank the whole 8 ounces by 6:10. Mike and I were so happy and thankful for the mercy God gave us this morning.

Mike and I are trying to prepare for the upcoming news on Mitchel's exact condition. God has already given us so much to be thankful for in having so many of you continue to lift us up and reach out to comfort us. We appreciate your kindness and faithfullness so much.

Love to all,

Mary and Mike

PS Alot of you have asked how Michael is doing, and he is doing great. We have not explained anything to him at this point, he is still a little young to understand all the medical information. He and Mitchel were up playing after Mitchel finished his contrast, they are such great friends and loving brothers.

Monday, June 12, 2006 10:52 AM CDT

UPDATE

We did meet with Dr. Kushner around 11:00 and he told us that we will have a few choices depending what the scans show today and tomorrow. We went over a few scenarios to get some kind of an idea, so he said we will meet again around noon tomorrow to make our game plan. I know that doesn't tell us much but I don't want to get into too much information until we know for sure what it is. Mitchel did great for his bone scan, Mike said he fell asleep, he is getting pretty good at these scans. It feels a little strange being here and not getting the treatment. Please pray that we all get a good night sleep and that Mitchel will be able to drink his contrast for the scan in the morning starting at 6:00 am. He will need to have it finished by 7:00 and it is about 8 ounces.

Love, Mary

Good morning everyone,

We are here at clinic and Mitchel has had his injection for the bone scan. He will have his scan around 2:00.

We have not seen the doctors yet but we have been told Mitchel will not be receiving his treatment today and probably be off the protocal for now. They need to know what the spot if before any further decisions can be made.

All your prayers are reaching us loud and clear, we have remewed strength and peace this morning.

Mitchel is running around playing and feels great!

Mike and Mitchel returned back from urgent care Saturday night around 3:00 AM. Mitchel received an infusion of a drug called IG to fight against the chicken pox that all the kids were exposed to. I have spoken to the parents of the child with chicken pox and they will be spending the next week in the hospital. Please pray for them as they too are having to go through this.

We were informed last night that Mitchel will have to be in isolation in the next few weeks and if we are still here we will have to move out of the RMH until the time passes where he is not contagious anymore. The doctors are figuring everything out about the exact dates of exposure and will let us know more about that soon. We are not too worried about this at this point Mitchel has already been exposed.

Thank you all for your continued prayers and support.

Prayer requests:

Mitchel will have God's healing hand on him.

Mitchel will be comfortable during this week through any procedures he might need.

Please pray for the doctors to have wisdom as they make decisions concerning Mitchel. Also all the doctors involved who will be reading the scans, we want them to see clearly what exactly is showing up on the scan.

Please pray for Mike and I have have continued strength and peace during today.

Love to all,

Mary

Saturday, June 10, 2006 11:20 PM CDT

Hi everyone,

Just wanted to let everyone know what is happening today. We had a wonderful day at Hershey Park, the boys rode alot of rides and ate alot of junk food.

Mike made it in and he was waiting for us as we got off the bus. No sooner than we arrived back at RMH that we received a call from the hospital and from the house manager informing us that Mitchel had been exposed to the chicken pox and we needed to bring him in for an infusion to fight off the virus. So we packed up and went to the urgent care facility, poor Mitchel had to get a IV put in again, I promised him he would not have another one until Monday but what can we do. After they got it in he was playing with Michael in the room like nothing had happened. He is such a good sport about everything. The infusion takes about 4 hours so Mike decided to stay and I brought Michael back to get some sleep. They will not get back here until 4:00 am. I have not spoken to the family of the child with chicken pox but my prayers go out to them tonight, I know this is difficult for them as well.

As far as the spot is concerned that showed up on the scan we still do not know anything yet. He will have a bone scan on Monday, starting with the injection at 10:00 and scan at 1:00, then a cat scan on Tuesday at 8:00. Since they put a IV in tonight we asked if they could let him keep it for the procedures next week so he will not have to get poked again on Monday.

Thank you all for your continued prayers, Mike and I are believe strongly in our faith and we have been praying for strength and encouragement right now.

Love to all,

Mary

PS The boys favorite ride today was the coal cracker, it is a log ride and you get a little wet at the end. We rode it twice, it was really fun.

Friday, June 9, 2006 7:17 PM CDT

Hello everyone,

Sorry so long for the update, we have been so busy. The MIBG scan today showed a new spot around Mitchel's left clavical. I noticed it lit up right away on his scan and when we went back to clinic I mentioned it to the nurse. She contacted Dr. Modak and he came in after looking at the scan. He confirmed that there is a new spot but does not know what it is at this point. Mitchel did not receive his treatment and we have stopped his injections for the weekend. He has a bone scan Monday morning and a CAT scan on Tuesday morning.

I called Mike and he is flying in tomorrow so we can sit down with the doctors together and figure out what our next step is going to be. Until we look at the other scans and meet with the doctors on Monday there is not much else we know. I hate the word relapse and I don't want to use it until we know for sure the results.

Mitchel just had a scan in April so whatever is showing up grew really fast.

We are still going to Hershey Park in the morning and the boys are so excited about that. Of course Mitchel does not know anything other than he did not have his ouchie medicine today.

Please pray for us all as we go through the weekend and as we meet with the doctors on Monday.

We will let you know when we find out more.

Love to all,

Mary

Thursday, June 8, 2006 10:14 AM CDT

I forgot to mention how much fun we had at the Prom yesterday. The boys wore their tux shirts and I wore a black dress. We took pictures, danced and ate some really great food. We had a great time, the cafeteria was decorated just like a prom. I will put the pictures on the website soon.

Hi everyone,

We came in early to clinic today to get things going so we could be ready for his MIBG injection this afternoon. So far we are completely off schedule, Mitchel's IV stopped working so he had another two sticks to get another one in. We had child life come in to calm him down because he was so upset about the whole thing. I was so torn up inside watching him and having to be one of the three holding him down. It helped to have the child life blow bubbles while they worked on his little hand.

They will take it out tomorrow and he will have the weekend to heal before getting another one on Monday. For some reason the veins in his arms are not working at all, the nurses are saying his veins are all rolling from scar tissue and so many pokes. Having an 8 week break will do his veins alot of good.

Mitchel gave us all a little scare this morning, it was a good one though, anyway the nurse went in to get him from the playroom and she came back and said he would not come, so I went in to get him and he wasn't there, immediately we all started looking for him but no one could find him. About 10 minutes went by and finally he poked his head out of a huge cluster of balloons that was on the floor, from the party yesterday, with a big smile on his face. Talk about not wanting to get a new IV, can you blame him. Monday 4 sticks and today two new ones. When he came out he said "you could not find me I picked a good hiding place".

He has his MIBG injection this afternoon, today will be a long day and tomorrow will also be a long day he will have his scan and then antibodies.

We are all excited about going to Hershey park on Saturday it will be a great day!

Thank you all so much for your continued prayers!

Love to all,

Mary and the boys

Tuesday, June 6, 2006 11:15 AM CDT

Day two

Hello everyone,

We are already counting down the days till we go home. Having 8 weeks off this time will be so awesome.

Mitchel is doing great, he had pain yesterday but it was not as bad this time for a Monday. He only had two rescues and went to sleep pretty early in the treatment. He woke in time for dinner last night and some playing.

This week the Ronald house is remodeling the kitchens so we don't have any where to prepare or keep food. They are having food brought in for breakfast, lunch and dinner but unfortunately no steaks or corn on the menu. I am taking the boys out to dinner tonight for a steak. I was able to buy a small cooler to keep some of their snacks in that they like, hopefully by next week the kitchens will be open again. We are on the afternoon schedule so he will get a good breakfast and lunch.

We always try and look on the bright side of things and stay positive.

Hope everyone is having a great week,

Love to all,

Mary

Monday, June 5, 2006 11:59 AM CDT

Hello from New York City,

We made it in around 8:40pm last night. The boys did really great considering they were in an airplane for about 6 hours.

So far today Mitchel has had 4 sticks to finally have his IV put in his little hand. We both hate this part of the treatment, but he will not have another one put until after the weekend. We are waiting for him to start his treatment, we are on the afternoon shift this week. Both boys are just playing in the playroom, they love it in here.

All the moms have been trying on prom dresses for the big event on Wednesday. They are having prom day here at the hospital and we will all be dressed up. The boys will wear tuxedo's and we will get pictures. They will have lots of food and a stage for everyone to dance on. So far Michael says he is not wearing his tux so we will see.

Mitchel will have his MIGB injection on Thursday and his scan on Friday, please pray for us both to have peace during this time. We always get a little nervous even though we believe there will be no cancer showing up.

Thank you all for your continued prayers, it was so nice to have so many of our friends tell us they will be praying for us while we are here these two weeks we love you all so much.

Mary

Saturday, June 3, 2006 1:26 PM CDT

Hello everyone,

Well our 3 weeks is slowly but surely coming to an end, we leave tomorrow for NY for another round of antibody treatment. This will be Mitchel's 6th cycle. After this cycle we go to a 8 week break, so we basically have the whole summer off. He will have two more rounds of accutane and that is it for medication, Yeah! He is very excited about that.

During these next two weeks he will have a CAT scan of the brain and a MIBG scan which is a full body scan. We are believing in clear scans!

We made another trip to the lake Thursday and came home Friday to start packing. We had a wonderful time just getting away and relaxing at the lake. It was great meeting up with Grandma Bailey there, we all love her so much.

Mitchel and Michael love riding the wave runner and going really super fast. We are going to miss home so much this time as usual, hopefully the time will go by really super fast.

Please pray for us as we travel to NY and for Mitchel's strength during his treatments. Also, please pray and thank God for Mitchel's clear scans, we are believing in this already.

Love to all,

Mary

Monday, May 29, 2006 9:10 PM CDT

Hello everyone,

We have been away the last couple of days enjoying our holiday weekend. Mitchel and Michael are doing great and been playing non stop.

I am a little dissappointed to think about going back to NY so soon, but we will be glad once we get there and see all of our friends again. The boys are excited.

This week will be full of fun! We will be swimming and just enjoying our time here at home before we leave on Sunday.

Mitchel has been doing great on accutane, not too many melt down moments and his skin is just a little dry on his face. We still have all this week left to take it and he starts his injections on Wednesday for 17 days.

Hope everyone has a great week!

Love to all,

Mary

Thursday, May 25, 2006 12:49 AM CDT

Happy Thursday,

Well no news is good news! Sorry we have not updated in several days but we have been too busy enjoying every minute of every day.

Mitchel has officially completed PRE-K, today is his last day of school, Michael is finishing up first grade as well. The boys are excited to start the summer.

We are heading for the lake in the morning for a little fun in the sun. Mitchel will be covered with sunblock from head to toe, he is on accutane and that makes his skin even more sensitive to the sun. Sunday we are headed out to Papa's ranch and be home Monday.

Next week we are planning on going to the waterpark and swimming everyday. Our trip back to NY is coming up next weekend, we are all anxious to get that trip over with.

Have a great holiday weekend!

Love to all,

Mary

Sunday, May 21, 2006 10:24 PM CDT

Hello everyone,

Well as you can see from the new pic's we had a wonderful weekend at the lake. Mitchel loved tubing, he said no at first but after seeing his brother have a turn he could not resist. After a while he even asked daddy to speed up a bit. He kept telling us how brave he was. They both enjoyed fishing, no fish in sight though.

I cannot tell you how we all needed this time away just to relax and enjoy being together as a family, we are starting to actually feel normal again, right now NY is the farthest thing from our minds.

Mitchel started his accutane today and will take it for 14 days, hopefully his skin won't dry out too bad.

The boys are finishing up school this week, they are both excited about that. Mitchel has a fun water day at school on Wednesday he is thrilled and cannot wait.

Thank you all for your continued prayers.

Love to all,

Mary

Tuesday, May 16, 2006 6:14 PM CDT

Hi everyone,

Sorry I have not updated in a few days, we have been so busy enjoying being at home together as a family.

Mitchel is back in school and loving it. He told his teacher that he missed her while he was in NY. Hopefully he will continue to go through the whole week, we will see. He says he's going tomorrow, so that is good news, one day at a time I guess.

Mitchel did the funniest thing after we landed in Tulsa Friday night, as we were walking to baggage claim he turned around and said "bad NY" and stuck his tongue out. I guess he is not going to miss NY at all these next few weeks. That will be the very last place he will ever want to visit when he gets older. I don't blame him! Sorry any New Yorkers reading this!

Well we just going to enjoy our few weeks at home and not think about NY for a while.

Thanks for checking in on us and all your prayers,

Love to all,

Mary

Friday, May 12, 2006 7:43 AM CDT

Happy Friday,

Finally we are going home!!! Mitchel and I are so excited, we cannot believe it.

Yesterday his treatment went pretty good, he still had a significant amount of pain but we weathered through it. With this treatment unfortunately pain is a good thing we secretely wish for a little pain at least. When they HAMA they do not have any pain.

After treatment we walked down to get some ice cream, it was so much fun we just sat and talked about how tasty our ice cream was and how we were looking forward to going home today. Mitchel is so grown up sometimes, I love him so much. They had a wonderful dinner last night at the RMH, Mitchel played all evening with the kids.

We have been sharing a treatment room all week with our friend Erin and her mom, they are from Maryland. Mitchel really enjoys her company they get along so well.

I cannot tell you how much I am looking forward to this Mother's day. It will be extra special being at home with all my children, I know the boys and Rachelle will make it very special for me.

Three weeks at home, Yeah. We are so excited about that too. Mitchel will have one whole week off of medicine, then he starts his accutane for 14 days. He will also be starting his immunizations this time at home. He will need to be completely immunized all over again so he will start out with 4 shots and will have to repeat them two more times two months apart. This is just another indication of how well he is doing on his road to being completely cancer free.

Love to all,

Mary

Wednesday, May 10, 2006 10:03 AM CDT

Happy Wednesday,

Mitchel is all done for the day. Today's treatment was not too bad, he had pain but it did not last too long.

He played for a few hours after treatment yestday and then took a long nap. His schedule is really off right now, he usually does not go to sleep until midnight.

2 more sleeps and we will be home, Yeah!

We are so happy to be going home on Friday.

Thank you for checking in on us.

Love to all,

Mary

Tuesday, May 9, 2006 11:03 AM CDT

Hello,

We are almost done with treatment today, Mitchel did great. His pain today was not quite as bad as yesterday, Thank goodness!

He is sleeping right now, we got here early this morning so hopefully he won't sleep so late in the afternoon. Yesterday he slept until 7:00 pm and then played until midnight. He had so much fun running around with all the kids, it sure makes the time go by alot faster.

Well we don't have much planned for today just hanging out at the RMH. The weather cooled off a bit so it not quite as nice out.

Hope everyone is having a great day!

Love to all,

Mary

Monday, May 8, 2006 1:15 PM CDT

Hello,

Hope everyone is having a great day! Mitchel is finished with his treatment for today and is sleeping off the pain medicine. Today's pain was really, really bad, he cried for a long time and literally screamed as the pain went through his little body. He screamed for daddy alot and for someone to take the pain away.

I cannot tell you how hard it is to be listening and watching all of this happen to your child. I have to rub his stomach during his pain with hot packs and his nurse rubs his feet. He only let's his nurse Cat rub his feet, she spoils him, but he deserves it.

I usually have a huge knot in my back from all the stress and bending over his bed rubbing his stomach, 15 minutes seems like hours.

We had a great weekend, enjoying the perfect weather. The RMH took us to Central Park for a picnic yesterday and we had a great time. The kids played baseball and soccer then me and another mom walked back after stopping at Cold Stone creamery for our favorite ice cream, it was so good. Mitchel ordered vanilla with marshmellows on top, something new he is trying, he loved it.

He is counting down the days till we return home, 4 more sleeps till Friday. We tried to get a Corporate Angel Flight but so far there is nothing available for Friday, so we will be flying commercial.

Thank you all for checking in on us, we love you all.

Mary

Friday, May 5, 2006 9:50 AM CDT

TGIF!

Things are going great here. Mitchel is in such good spirits, the RMH has been having parties for the Cinco de Mayo celebration, the kids love all the mexican music and dancing.

We are having another party tonite and Sunday they are taking us to Central Park for a picnic.

Mitchel is so glad today is his last day for treatment for this week. He will have two days off, Yeah!!!

We will be flying home on the 12th just in time for mother's day.

Not much else to report, hope everyone has a terrific weekend.

Love to all,

Mary

Wednesday, May 3, 2006 11:39 AM CDT

Hello,

Finally we are finished with treatment today, Mitchel is sleeping it off in the bed here at clinic. His pain today was worse and it took him alot longer to get comfortable. But we are finished and tomorrow will be a better day.

The weather here is okay, a little cloudy. The temperature has been in the high 60's so it is not too cold.

Mitchel and I took long naps yesterday and woke up around 4:00. He played all night until 10:00 then we went up to our room and he watched a movie until 12:00. Our schedule is not what it is a home but I pretty much let him do what he wants since he goes through so much here. He is such a good boy.

He is glad to see all of his friends, they play togehter so well. We are going out with friends tonite for a bite to eat, we will probably end up going for a long walk.

Thank you all for your continued prayers, I have such peace this trip and actually feel pretty relaxed.

Love to all,

Mary

Tuesday, May 2, 2006 4:35 PM CDT

Greetings,

How is everyone? We have finished for the day and the treatment went pretty well. Mitchel continues to have pain but it does not last as long. We both took naps this afternoon and got some good rest.

The Cinco de Mayo party last night was wonderful the food tasted so good. Mitchel slept through the whole thing in his stroller. It was so loud at the party we were all surprised he did not wake up once.

He was a little dissapointed this morning knowing he missed the whole things, he wanted to know if they were having another party tonight. He's a party animal!!!

He woke up last night around 10:00 with an appetite, so we went down stairs for a little snack. He finally went back to sleep around 12:00.

Hope everyone is having a great day!

We are both counting down the days to return home!

Love to all,

Mary

Monday, May 1, 2006 2:19 PM CDT

Happy Monday,

We made it here in NY safe and sound last night around 11:00 pm. Right when we got to the airport yesterday they were just posting a departure time change delaying our flight 2 hours. I usually call before hand but did not do it this time. My sister was dropping her friend off at the same time so we got to visit for a while.

Everyone was so nice on the airplane, the flight attendants took Mitchel up to meet the captains and they let him say hi to mommy on the intercom. After he returned back to his seat the flight attendant said come with me and bring your things, there were two empty seats right in the front of the plane in first class and she took us right to them. We were thrilled to be seated in first class, it was fun. The flight stopped in Chicago, but we did not have to get off the plane, which was a blessing because Mitchel had fallen asleep, but eventually we had to return to our original seats, the plane was overbooked to NY. Oh well it was fun while it lasted. We arrived in at the RMH shortly after 12:00 and got into our room, we have one of the newly renovated rooms and it is very nice. Mitchel was so hungry so we walked down to the corner and got some milk and cereal, after eating his cereal he was ready for bed.

We slept in a little this morning and arrived here at clinic around 10:00. He had several appointments this morning before starting his treatment. He first saw the nurse practitioner and Dr. Kushner, then it was a finger stick next a IV put in, lunch and we started treatment around 3:00.

Dr. Kushner and I talked about our next trip to NY after this treatment cycle. We will be returning June 4 to start on June 5 for two weeks of treatment. They will go ahead and do a full work up of scans and another bone marrow biopsy during the two weeks and then we will be off for 8 weeks. Yeah!!!! We cannot wait for the long break, it has been a long wait for that!

We are suppose to do a full work up of scans every 3 months but Dr. Kunshner said if it is only two months in between scans it is fine with him. I totally agree we need to stay one step ahead of the cancer at all times.

Mitchel's treatment today was not too bad, he only had two rescues of dilaudid and did not seem to have too much pain. The pain he did have was intense but only lasted about 10 minutes, which always seems like hours. As the pain was really intense he cried out "I want someone to take me all the way back to Bartlesville". It was so heartbraking hearing him cry out and request someone to take him out of there. It wasn't long after that when he feel asleep.

Tonight the RMH is having a Cinco de Mayo party with a mexican dinner, yummy, my favorite food. Mitchel will be having his usual steak and corn, he already has his list put together of the things we need at the store. A box of cereal here cost about $7.00, you can imagine what the steaks costs, but he enjoys every bite and it keeps the weight on.

Thank you all for checking in on us, we enjoy reading all your wonderful messages on the website. Please continue to pray for us as we endure the next two weeks of treatment. We will be home on the Friday, May 12, just in time for Mother's day!

Love to all,

Mary

Monday, April 24, 2006 8:33 PM CDT

Hello everyone,

Hope everyone had a great weekend. We enjoyed being home so much, the boys played outside all day, everyday. Mitchel's party on Saturday was so much fun. The kids played games and especially loved hitting the elmo pinata. Mitchel was all smiles.

We cannot believe how great he looks and feels these days. We finally feel that he is totally cancer free and have so much peace about it.

Mitchel has been going to school everyday and has not complained once about his tummy hurting from the accutane. He has been eating just like normal and it is great to see him this way.

We are going to the lake this weekend and the boys are excited, daddy bought them each a fishing pole and lots of things to go with it. It will be a great family weekend before Mitchel and I have to leave again for NY. He is counting down the days before we have to leave, I have been telling him daddy cannot go with us this time and he seems to be okay with it so far. This should be a short trip returning only after two weeks.

It was so great seeing everyone at church Sunday, Mike and I are so thankful to have a church family that continues to lift us up in prayer.

Well better go the boys are ready for bed.

Love to all,

Mary

Thursday, April 20, 2006 2:32 PM CDT

Great news!

Mitchel's bone marrow is again clear! No evidence of cancer anywhere. We are thrilled!

Another friend of ours just got the news that their MIBG is clear after the 3F8 treatment, way to go ERIN!!!

Mitchel went to school today and he had such a great time, we are going to feed the ducks after Michael gets out this afternoon. The boys are both so happy to be home and going back to school.

Hope everyone is having a great day!

Love to all,

Mary

Wednesday, April 19, 2006 6:27 PM CDT

Hi everyone,

We made it home safe and sound. All of us our soooo happy to be home. The boys have been playing all day!

Good news! Mitchel is going to school tomorrow, he mentioned it all by himself, he is excited about going. He is feeling so great even on the accutane, so I think he is going to enjoy going back to school.

I am so proud of both my boys they have both been so brave through this whole journey. It is so hard on Michael knowing what Mitchel goes through and not fully understanding it all. He is a great big brother!

We do not have anything planned, just to relax and enjoy our home. This weekend we are having a very low key birthday party for Mitchel, he was excited to order the cake and pick out his candles.

This trip was probably the hardest for me just because of how long it took to get everything done and emotionally it was very challenging. It is times like these that I lean so hard on my faith and continue to remember God promise to us.

Thank you for checking in on us,

Love to all,

Mary

Tuesday, April 18, 2006 11:21 AM CDT

Mitchel is having a great birthday. We are getting ready to head to the hospital for his afternoon party, he has his evening party tonight. He just loves having two parties today, then when he gets home he will be having another one on Saturday.

This afternoon is his last radiation treatment, I can honestly say the radiation has not slowed him down one second, he has been feeling so great. I told Mike this morning this is the best I have seen Mitchel, he has so much energy and is full of life. We had his counts done yesterday and they look beautiful, his bone marrow biopsy results should be done by the end of the week.

We are all excited about getting home tomorrow. The boys are anxious to see their dogs Sandy and Sable and play in the back yard again.

We will be leaving on a 6:00 am flight to be home around 11:30. The morning cannot come soon enough!!!!!

Hope everyone is having a great day, thank you all for the special messages to Mitchel on his birthday, he loves reading them.

Love to all,

Mary

Friday, April 14, 2006 12:56 AM CDT

TGIF everyone,

We are enjoying our afternoon, even though it is raining here the boys are having fun playing inside.

Mitchel had his radiation appt this monring and then his dental appt., he did great at both. The dentist took x-rays and looked at his teeth. They studied his x-ray closely, so far there is only one adult tooth that looks like it is not developing correctly, but we still have to wait and see until the tooth actually comes in and what it looks like then. If he does have some teeth problems it should only affect his lower teeth in the back on each side. We will just have to wait and see.

Mitchel also had his labs checked this afternoon and they look great! Sometimes radiation can make your counts lower.

We do not have much planned for this weekend, just being together.

Happy Easter to everyone and thank you all for checking in on us.

Love to all,

Mary

Wednesday, April 12, 2006 8:55 AM CDT

Hello everyone,

What a great day we are having, the weather is so nice and the sun is shining.

Mitchel's treatment this morning went great, it only took 45 minutes and he was in a very good mood. He has a hearing test at 12:00 and then radiation again at 3:00. Then daddy and Michael will be here. Yeah!!!!!!

Since we have stopped the accutane for now his tummy is much better. Mike is bringing his Zofran medicine for him tummy for when we start the accutane again this weekend. He is eating eveything in site. This morning we got back to Ronald around 9:45 and he wanted steak and corn, so that is what he had for breakfast, he ate quite a bit.

I can't believe we already have our tickets for our next trip back here, I hope the time at home goes by really slow. We will surely enjoy every minute of it.

We want to say a special THANK YOU to the McDonalds for taking care of our baby Sandy at home while we are here in NY, I know she will love being with your family and all your babies.

Thank you all for your kind words they are so encouraging to us.

Love to all,

Mary

Tuesday, April 11, 2006 11:36 AM CDT

Hello,

Hope everyone is having a great day. We have been enjoying the last hour or so. Things are starting to calm down from this morning.

Last night we had a radiation appointment at 6:00 and it took about an hour and a half, Mitchel cried at first he was so tired of having to do the radiation and lay still for so long. Eventually mommy talked him into getting on the table and getting through it. He was in great spirits last night but then this morning he did not feel that great. His appointment this morning was okay, he was complaining of his stomach not feel good and when we got back he threw up. I called Dr. Kushner and we decided to take him off the accutane until the weekend and see if that helps him feel better. The accutane can make you feel a little sick to your stomach, he just has too much on him right now and we need to get through this week. Mitchel was thrilled to be off his accutane for now, he does not like taking it.

We go again this afternoon for his 2nd treatment at 3:30, please pray that he will be in good spirits for this appointment. I know it is so hard on him, he doesn't understand why he has to go through all of this.

One more day until daddy comes, yeah! We both are very excited about it.

Love to all,

Mary

Monday, April 10, 2006 11:19 AM CDT

Happy Monday,

What a busy day we have had already. Mitchel sailed right through his radiation this morning. They got 4 spots done in 2 hours. It should not take as long from now on, they said about 45 minutes. He tried to lay completely still and did a great job with the exception of a few wiggles.

I postponed his bone marrow biopsy until next Monday, I told them it was just too much on him today and wanted to give his veins a rest before them start poking him again for an IV. He will be tested again on Monday anyway for HAMA so they will only have to stick him once for two things on Monday.

We ventured out yesterday to the Bronx Zoo, it was a really nice zoo, pretty big. We went with another mom and her daughter, they are from Minnesota. Mitchel loved all the animals and thought the zoo was really cool. We then took a cab over to Mary Ann's for a great mexican dinner. Mitchel made it back in time for another birthday party while he waited for his steak dinner. He is so funny about his steak meals, he just loves them.

Mitchel is scheduled for ratiation twice a day so today we have to return at 6:00 pm for another round. The rest of the week should be earlier in the afternoon.

On our way back this morning we stopped in the grocery store and ordered his football cake, he is very excited about his upcoming birthday. He wants a football cake here and also at home for his party there, we think he deserves two cakes. They will also have a party for him in the playroom at the hospital on Tuesday, he will be so excited to have so many parties going on.

Thank you all so much for your continued prayers, we have endured alot this trip and we know that your prayers have lifted us up daily.

Love to all,

Mary

Friday, April 7, 2006 9:00 AM CDT

Update 3:25pm

We made it back from Mitchel's radiation appointment, he did great. It was a trial run before he starts on Monday. He had to lay naked on a table which was about 5 ft in the air, he was so scared at first because he had to stay in the room by himself but eventually he focused on the Bob the builder movie playing for him. He had to lay still for about 2 hours while they took films of his radiation spots. Thank you for all your prayers, he did great!

Finally Friday has arrived,

Poor Mitchel had to have his IV pulled first thing this morning, every time they ran his fluids through it he screamed, so again they had to put a IV in for today in his little hand. I am not sure how much more of this I can take. He screams for his daddy every time and tells the nurses to please stop.

My heart breaks everytime he screams.

Good news is this is his last day for a cycle like this. The medication will be given through an injection instead of through the line. They explained to me last night that he is having more problems this time with the IV because they are using it so much to administer his medication.

The RMH is taking everyone ice skating tonight in Central Park, we are signed up to go, hopefully we will be done in time to go. I think Mitchel would love to just go and watch everyone. The weather here is not too bad, not a full spring yet, we are hoping this weekend will be warmer and we can get out and enjoy the fresh air.

I know this whole thing has got to be taking a toll on my emotions, I am trying to stay strong but I often feel defeated. I am praying for strength to get me through and trying to be strong for Mitchel. He is the one who goes through so much, I feel selfish even talking about how I feel.

Well I better go, we have a radiation appointment soon.

Love to all,

Mary

"Let us keep looking to Jesus. He is the author of faith. He also makes it perfect. He paid no attention to the shame of the cross. He suffered there because of the joy he was looking forward to. Then he sat down at the right hand of the throne of God. He put up with attacks from sinners. So think about him. Then you won't get tired. You won't lose hope."

Hebrews 12:2-3

Thursday, April 6, 2006 9:58 AM CDT

Happy Thursday,

Thank goodness this week is almost over. We cannot wait to be done with this cycle. Mitchel did great yesterday, we finished around 5:00, he slept until about 7:30 then he was ready to plan. All the kids were playing last night there was a birthday party in the dining room for our friend Ryan. We will be having one for Mitchel there real soon. He cannot wait to turn 5 years old.

It snowed here yesterday, we could not believe our eyes, it really wasn't that cold outside, this morning the walk in was real nice. The sun is shining and you can almost feel spring, we are hoping it will be nice this weekend.

Tomorrow we go down to radiation for a trial run before he starts Monday, I know he will do fine.

Well hope everyone has a great day!

Love to all,

Mary

Wednesday, April 5, 2006 9:34 AM CDT

Hello,

We are hanging in there, yesterday was pretty good. We left the clinic around 5:00 and Mitchel had a great evening playing with the other kids.

Thank you all so much for all the prayers, we have been carried along all week.

Love to all,

Mary

Tuesday, April 4, 2006 8:42 AM CDT

Happy Tuesday,

HOpe everyone is having a terrific day. Mitchel and I are here in clinic waiting for his medicine to start up. We survived yesterday even though it was a tough and long day. Mitchel had his radiation simulation, this is where the mark all the places with tatoos after going thru a series of scans to find the places to mark on his little body. They stick a needle in each place and push in a little dye to mark the place with a permenant tattoo. Mitchel had 20 marks put on him. He has 10 on the front of his upper leg, three across his chest, one on his left collar bone and 6 on his right arm. Thank goodness for the numbing cream he had patches all over him with the cream. Everyone was so amazed at how well he did, he did not cry once, they whole procedure took 3 hours. He once again has endured something no child should have to go through.

That should be it except for his normal treatment the rest of the week. We both cannot wait for this week to end, we are counting down the days until Michael and daddy come. It won't be long!

We are so blessed to have many friends here and that truly helps us get through these long days away from our home. Mitchel plays with all the kids and they have so much fun.

Well we better get going, love to all,

Mary

Sunday, April 2, 2006 4:17 PM CDT

Hi everyone,

Hope everyone is having a great weekend. We hear the weather back at home is wonderful. The weather here in NY has been fantastic. Mitchel and I have been out everyday enjoying the weather.

Friday's treatment went pretty well, the day started out great but it went sorta down hill from there for a while. It all started when they needed to put the IV in for his treatment. The arm they were using looked great for veins and there did not seem to be any problem until the needle went in and there was no blood in sight, so they stuck him again and then again. By that time we were both crying and I told the nurse that was it take it out and we got up and left the room. She was fishing around with the needle in his little hand and he was screaming. I could not stop crying, so after a few minutes I went to another nurse and told her what happened, she said to wait a few minutes and another nurse would be doing the next one. The next stick went right in and there were no problems. His pain was there during the treatment but not as bad as the days before.

We left the hospital around 4:30 and the weather was so nice we decided to take a walk, I should say I decided Mitchel was sound asleep. So off we went for a wonderful walk, we made it about 6 blocks and the wheel fell off of the stroller. I could not believe it, instead of crying I just started laughing. It was one of those moments, I called Mike and we laughed together. Mitchel slept through it all. We ended up taking a cab back to the Ronald House and just went to bed. The next day we woke up determined to have a great day, and we did. I found a store not too far that carried strollers and we got one that was bigger, the other one was too small anyway so it all worked out.

We appreciate all the wonderful messages you all have left on the website, they are so encouraging to us. Mitchel loves to hear how much everyone loves him.

We went for his MIBG scan yesterday around 9:00 am and he did great, we should find out the results in the morning. The CAT scan came back normal.

The only test left to do is his bone marrow biopsy, which is scheduled for Monday, April 10. That is the day he starts his radiation as well.

Please remember Mitchel tomorrow as he will be getting his radiation simulation in the morning at 10:00. This will be a new experience for him without anesthesia, we know he can do it.

Love to all,

Mary

Friday, March 31, 2006 8:37 AM CST

Happy Friday,

Well today is already a much a better day. Mitchel found his friend this morning in the playroom, they have not played all week, so it makes me happy to see him have fun.

Yesterday's treatment was not too bad, he did complain last night of his ankles hurting, but we have pain medication for that. He is excited to have the weekend off from treatment. Right as we were to leave yesterday the nurse noticed that his arm where his IV was felt a little hard and Mitchel complained about it hurting him so we had to take it out. He will have to get another on put in this morning and again take it out for the weekend. He asked me this morning about getting a new IV and when I told him yes he will have another put in he said, "I thought so". He is getting so smart about all his mecical procedures.

Tomorrow he will have his full body scan, MIBG, please pray for clear scans!

Thank you all so much, we love you all,

Mary

Thursday, March 30, 2006 10:03 AM CST

Hello everyone,

I wish I could tell you yesterday was a better day but it wasn't. Mitchel had alot of pain in his ankles after his treatment and had a coughing spell. I had to rub his ankles and finally convinced him to let me put hot packs and cold packs on his ankles to make them feel better. I had to tape them on for the ride back to the Ronald House. Tylenol took care of his coughing. He really did not feel good until around 9:30, he did eat a pretty good dinner and had some cereal before going to bed around 12:00. He slept all the way to the clinic this morning and now he is playing the gamecube in the playroom while his medicine is running through the IV.

They are watching him closely here for all his side effects, but so far they do not feel he needs to be taken off the GMCSF through the IV, they want to control all his side effects with medication. I know if something comes up that would be life threatning they would take him off immediately, so for now we will take one minute at a time.

Child Life talked with me this morning about going down with him for his radiation simulation on Monday. This is when they will be marking the areas of radiation and it will take about an hour to get all of his places marked. The hardest part will be holding still while they tatoo his pin points for radiation, this will guide the beams as he gets ratiation so they are very necessary. I have never had a tatoo but I know a small needle is involved and he has to hold real still. We will try this without anesthesia and pray that it will work this way, everything takes so much longer when you have to give them anesthesia for a procedure.

Right now our lives consists of clinic and staying in our room at the Ronald House. He does not feel like doing anything else, hopefully this will change over the weekend, it will be nice to get out and stretch our legs.

Thank you all for your continued prayers!

Love to all,

Mary

Wednesday, March 29, 2006 10:43 AM CST

What a difference a day makes!

Mitchel is doing so much better today. We even ventured out last night to his favorites places, Toyrus and Nintendo world.

Great News! His MRI of the brain is CLEAR! Praise God!

We met with the radiologist this morning and everything is set to start radiation on Monday, April 10, he will have two sessions a day for 7 days. So we will not be able to fly home until April 18. That is Mitchel's 5th birthday and we are so glad we will at least be home that night. Mike and Michael will fly in for a few days and we will all fly home together. We will all be together for Easter and that weekend we will celebrate Mitchel's birthday here in NY. His counts could be effected by the radiation and he may not have his full energy but we will just have to wait and see how he is feeling.

The radiation will be on his left clavical bone, right humerous bone and both femur bones, which is the left collar bone, right upper arm and both upper legs for those of you who do not know your bones, like me. Ha!
We were very encouraged after meeting with the Dr's about radiation, as you can imagine we were very anxious about everything.

Mitchel did great for his CAT Scan this morning, we should have those results tomorrow.

Well that is about it for now, Mike is getting ready to leave for his flight so I better run,

Love to all,
Mary

Tuesday, March 28, 2006 1:57 PM CST

Hi everyone,

Well where do I begin? First Mitchel is doing good at the moment. The GMCSF medication hit him like a ton a bricks yesterday and it was the one of the most challenging days yet for us. Right away he started out with pain in his mouth and teeth, he was uncomfortable all day. Did not want anyone to touch him, just wanted to be left alone.

Last night he did not get out of the room, he just did not feel like himself at all. He finally started to feel a little better around 9:00 and ate some steak and corn, his usual. He went back to sleep around 11:00 pm and about 3:00 am I noticed he was making funny sounds in his sleep and was breathing very fast. I put my hand on his head and I knew immediately he was burning up. We jump out of bed and Mike took him directly to urgent care. They kept them there and gave him an antibiodics and some fluids. His fever broke soon after and by the time they were released from urgent care it was time to go for Mitchel's MRI at 7:30.

I met up with them up at clinic around 8:45 and we were all glad to see Mitchel feeing better. After discussing all the issues with Dr. Kushner we decided to wait and see how he does today and make a decision based on that. So far todays treatment has gone 100% better. What a relieve!

Mitchel was perfect for this scan this morning, holding still the whole time. We do not have the results yet from that scan. Tomorrow morning is his CAT Scan and it only takes about 10 minutes for that.

We were surprised to find out that we are meeting with the radiologist tomorrow morning after the scan. The decision for radiation has been made and Mitchel will be getting it real soon. We will find out more tomorrow about what sights will be radiated and how many treatments he will need. We will also know more about how long and when the treatment will take place. Dr. Kushner hinted around this morning that we may not be going home after this cycle because of the ratiation, so we may have to stay for a month this time, we will let you know. He did say he wants Mitchel to start with radiation real soon and not wait on it. We have the same questions alot of you have, why radiation if his scans are clear of cancer. Well first of all we are dealing with a cancer that has a very high percentage rate of returning, relapse. Mitchel has about 4 places that were very hard to clear, even after all the chemo they were still showing up on the scan. It was not until after the 3F8 antibodies that they cleared, so those spots are considered areas that could possibly be relapse spots one day if not treated with radiation. Again this radiation is just a precaution and Mike and I have thought about it alot, we both agree with Dr. Kushner that we need to be one step ahead of the cancer.

It will be very difficult to stay for such a long time, but we know this is Mitchel's best chance of being clear of cancer forever.

Another tough decision is Mike leaving tomorrow, we are torn about it. We know Mitchel needs us both here but we also know Mike needs to be home with Michael and he needs to get back to work. Michael has a very special singing program he has been working on for Friday morning, I know Mike does not want to miss that, if means so much to Michael to have him there and he also gets to have daddy bring Sandy, our new puppy, to school for show and tell. These are memories that Michael will always have in his heart, it is not easy making all these decisions, I know they probably seem real small compared to everything else but they do play a big role in our lives everyday.

We continue to pray about all our decisions and we know that God will lead the way for us. We know alot of you are still praying for us everyday and we could not make it without all those prayers. Our God is a wonderful and merciful God. We are resting in his arms today!

We will keep you all posted about the scans this week,

Love to all,

Mary

Monday, March 27, 2006 11:39 AM CST

Hello from NY,

We made it safe and sound around 4:30 yesterday afternoon. The flights went very smooth with no problems.

Mitchel has already had a long day, he is sleeping in his room here at the hospital. They had to give him benadryl this morning shortly after he started receiving his GMCSF through the IV. He has never had it through the line before so he is having a few reactions to it. All seems to be going better now. He will have the GM through the IV for two hours then we wait another hour then he receives the 3F8 antibodies. It takes much longer this cycle because of the GMCSF going through the line. It will made each day really long.

We are so glad to be here together as a family with Mitchel, except we miss Michael. Daddy says Michael will be coming next time for the first few days. We wish we could all be together and not have to be apart during these difficult days, it always helps for us all to be together.

Mike will be going home Wednesday so we are enjoying all the time we get with him now.

Mitchel will have his MRI in the morning at 7:30, we will be talking to him about it trying to prepare him again to go through the scan without anesthesia. It will take about 1 1/2 hour for the scan. I know he will do it just fine.

Thank you all for checking in on us, we are doing just fine.

Love to all,

Mary

Wednesday, March 22, 2006 10:05 AM CST

Happy Wednesday,

It is official, Mitchel is HAMA negative so we are traveling back to NY for another round of the 3F8 antibodies. Dr. Kushner's office called this morning to give us the news. The HAMA test is done through blood that we send to NY after every treatment.

All of our plans are set in place and we leave on Sunday morning. Mike will be traveling with us for a few days then return on Wednesday. Mitchel and I will return on Monday, April 10. Michael is upset that he cannot go and feels left out, it is hard for him to understand that we are not taking Mitchel on a vacation but that he is going for a medical treatment. I can understand how he must feel, we promised him a trip to NY this summer when he is out of school and the weather is alot nicer.

Mitchel is feeling pretty good, he still has a cold and he has been complaining of mild stomach pain when he goes to the bathroom. I have noticed his stool are loose, so we are taking him in this afternoon to check for c-diff. He has had it several times before and they have medication for it. We will be going to his pediatrician here in Bartlesville, Mitchel has not seen her since he was first diagnosed. I know Dr. Bumpus will be thrilled to see how well he is doing.

The doctors in NY are not wasting any time getting him in for his scans next week. He will have his first one, a MRI of the brain bright and early Tuesday morning at 7:30, then on Wednesday morning a CAT Scan at 8:20, he will have a MIBG scan which is a full body scan on Saturday morning. I am glad they are getting them done early so we don't have to wait for the results too long. Even though we are believing in clear scans it is always a little nerve wrecking waiting for the results.

Please join us in prayer next week as Mitchel has these scans, we need prayer for comfort and peace. He will be having all scans with anesthesia and he must lay very still, we know he can do it.

Hope everyone has a wonderful day!

Love, Mary

Tuesday, March 21, 2006 11:22 AM CST

Happy Tuesday,

Hope everyone is having a great day. We have been enjoying our time at home so much. The boys spring break was wonderful, we did not do much but having that time together was much needed.

Mitchel has again decided he is not going to school, so I am not sure if he will be returning this year. I cannot figure out what happended that has changed his mind about going to school. He truly believes he will miss me to much and does not want to be away from me. Maybe his medication has influenced the way he is feeling about it, I know accutane can cause depression and mood swings. Thank goodness he is finished with this cycle. He will start his GMCSF injections tomorrow, it feels like he never gets a break from medication, he is such a trooper though never really complains.

This treatment in NY will be a little different this time in that they will be giving him his GMCSF medication through the IV instead of an injection. It is part of the protocol on the 4th cycle, some patients have had more side effects but some have had no side effects. We pray that Mitchel will sail through this cycle without any side effects and the good news is I will not have to give him a daily injection when we are in NY only on the five days before his treatment begins.

The boys and I have been fighting off colds and we are all feeling better. Mitchel's skin is getting better everyday.

Thanks for checking in on us, we love you all,

Mary

Friday, March 17, 2006 9:17 AM CST

Good Morning,

We made it back safe and sound from our little trip to the country. We actually stayed an extra day the boys were having so much fun. They woke every morning and went armadillo hunting with papa and they helped feed the cows and horses.

They did not want to come home yet but Mitchel had a appointment to have his labs done in Tulsa yesterday. His HAMA test will be done next week to see if he can continue on the treatment. We feel pretty confident that he will be able to continue on the treatment, they usually stop having pain during their treatment and Mitchel has continued to have significant pain with his last treatment.

This treatment will be his 4th cycle on the regular dose of the 3F8 antibodies. We won't know when his last cycle will be, that will depend on when his immune system starts to reject the treatment which could be on this cycle or 5 cycles from now. During this trip to NY he will have a full work up of scans. We are going to try them all without anesthesia except for the bone marrow biopsy. He will have a brain and face scan, MIBG full body scan and a chest, pelvis and abdomen scan. It will be a busy two weeks.

We are trying to stay positive about going back, it is getting harder and harder to return. Please pray that we will find peace about having to return and we will stay positive.

Mitchel continues to take accutane until Sunday. He cannot wait to take his last pill, his skin is really dry on his face and lips. We are still having to break open the pill and put the substance on a ego and dip it in syrup, I cannot wait until he learns how to swallow. He just doesn't understand how much easier it will be that way.

We are having Michael's birthday party tomorrow and the boys have been planning it all week. They are so excited about celebrating his special day. Mitchel know his is coming up next in April and I know he will start to plan his right away. Last year we had both of the boys birthdays at St. Jude, so this year will be very special.

We wish everyone a happy weekend! Thank you for your continued prayers, we believe in Mitchel's complete healing on earth.

Love to all,

Mary

Saturday, March 11, 2006 1:50 PM CST

Happy Saturday!

What a beautiful day today turned out to be. We have been working outside all morning. The boys have enjoyed playing in their new clubhouse they made with an old swing that was tipped over in our yard. We were about to hall if off until they discovered what a cool clubhouse it would make, so I guess the old swing is staying.

Off and on we were listening to them talking and singing their clubhouse song it goes something like this. "rub a dub dub we are in a club". They are so cute I love it when they use their imaginations, we are just waiting for them to ask if they can sleep out there.

Mitchel is feeling so great, he was a little grumpy about taking his accutane this morning but he eventually took it, I know it makes his stomach a little yucky.

Monday we will be taking a little trip to Papa's ranch and the boys are so excited. Mike will stay here and enjoy some R&R at home alone. The boys are excited about having a whole week off for spring break to be with us, I know one day they will be wanting no part of hanging out with mom and dad during spring break so we are enjoying this age so much while it lasts.

Thank you everyone for your continued prayers, we know there are alot of prayer warriors asking God to continue to keep Mitchel cancer free!

Hope everyone has a wonderful weekend!

Love to all,

Mary
Mary

Wednesday, March 8, 2006 9:21 AM CST

Hi everyone,

We are doing just great! Mitchel has been feeling really good. His HMA, VMA urine test came back within normal levels again, this will be the second time for this. They can check his urine for tumor activity. We continue to believe he is completely free of cancer and will STAY THAT WAY!

Yesterday I took Mitchel to school yesterday, he sat down in his chair and before I left he got this sad look on his face like he was going to cry. I asked him if he wanted to stay and he said no he wanted to go with me. His teacher told me yesterday that he wanted to go home but he decided to go ahead and stay since they were about to go out for recess. Today he decided that he would just stay home again with mom. I am not going to make him go, he has started his accutane again and that can cause him to feel sad or have mood swings. He will let me know when he wants to go to school.

We have a new member of our family as of Sunday, her name is Sandy from the character on Sponge Bob cartoon. Mitchel wanted to name her Sponge Bob but with a little pursuasion he went with Sandy. Michael actually named her he was so proud of himself coming up with a good name. She is a 6 week old beagle and the boys just love her so much. I will have pictures posted on the site later today.

We wish you all a happy day!

Love to all,

Mary

Saturday, March 4, 2006 10:45 AM CST

Home again!

Yeah we arrived in style yesterday on a private jet, it was so nice not having to go through the airport and change planes. The jet drove right up to our van and Mike and Michael were all smiles, it was a great moment.

The boys played non stop last night, it was so wonderful to see them telling each other what they have been doing and how much they missed each other.

Thank you all for your prayers while we were gone, I know some days I just don't know if I can do it, but the energy comes and we keep going.

Today Michael has skill evaluation for his T-ball team, we have signed Mitchel up also but after giving it some thought Mike and I have decided to not let Mitchel play. He has had radiation to both his jaw bones and we fear that if he were to get hit just one time in the face it could shatter his jaw bones. Better safe than sorry. We will definitely try and find a sport he can play that doesn't include hard balls flying around.

Hope everyone has a great weekend, I know we are going to enjoy every minute of ours.

Love to all,

Mary

Thursday, March 2, 2006 2:19 PM CST

Hello everyone,

We are almost finished for this cycle, yeah! One more day! We will be home tomorrow and we cannot wait. It snowed all morning here but it is not too cold thank goodness. We have to walk about 5 blocks to the hospital everyone morning so we have learned how to bundle up for all those cold mornings.

Mitchel's treatment continues to go very well. His pain has been about the same all week. He has started expressing his pain through anger with alot of yelling out. He has been yelling, I want to go home, I can't do this anymore. I think he is getting very tired of this whole treatment and is ready to go home. The three weeks off will be good for us all.

When we return he will have several scans and a bone marrow biopsy so we will have to stay for 2 1/2 weeks. Dr. Kushner said we will not begin the 8 weeks break between treatments until after the 6th cycle and we are just finishing our third so we have a ways to go. They are still debating on whether to do radiation on one spot that is now clear but was very persistant for a long time, they will make their final decision after these next series of tests.

We are so thankful to have met so many wonderful friends here and Mitchel also has quite a few friends. He plays with one in particular from England his name is Jordan and the whole family is so kind to us. We have a great support group here for neuroblastoma, so many families come here from all over the world to seek treatment that you cannot find anywhere else. We have met families from Australia, England, Spain, Mexico, Trinidad, Greece and many from around the US.

Thank you all for your continued prayers we appreciate them so much.

Love to all,

Mary

Tuesday, February 28, 2006 11:25 AM CST

Hi everyone,

Sorry I have not updated as much this trip, it is hard for me to get to a computer. Things are going well, Mitchel and I are in the playroom, his treatment is over and he is watching a movie with the other kids.

So far this weeks treatments seem to be a bit easier, he has not needed as much dialudid. We are both hoping this week goes by really quickly.

Mike made it home Sunday and Michael was so glad to see his daddy. Both boys are starting t-ball and they have their first meeting this weekend, we are all excited about that.

We are flying home on Corporate Angels, Williams Company, directly into Tulsa so we are excited about that. It makes the trip alot easier than traveling through the airport when Mitchel is still a little sedated. We have flown with them before and the people are so nice to us. We will arrive a few hous earlier too, Yeah!!!!

Well Mitchel is calling for me I better run.

Love to all,

Mary

Friday, February 24, 2006 8:25 AM CST

TGIF everyone,

We are looking forward to the weekend. Mitchel is excited to be having his IV taken out today for the weekend. His IV was something we thought would be a issue but he has once again shows his bravery and kept on going with such a great attitude.

We enjoyed a nice dinner last night at the Wicked Wolf Cafe just down the street. We decided to try a new place and it was delicious. Then it was across the street to the TastyD lite for an ice cream cone, of course Mitchel had his usual steak and corn at the RMH before we left, he loves the way mommy fixes it.

The weather has been pretty good, not too cold. We planning on going to Central either this afternoon or tomorrow.

Mitchel is excited to have the weekend off from the treatment. We are too!

Hope everyone has a great day!

Love to all,

Mary

Thursday, February 23, 2006 7:41 AM CST

Happy Thursday,

We are on day 4, Yeah, almost done for this week. Yesterday's treatment went pretty well, he still had pain but it was not as intense.

After Mitchel's treatment we went back to the RMH and took longs naps, Mitchel needed one so bad. He woke up in a great mood, we ventured out for a while. He wanted to take his daddy to Nintendo World, he was excited to buy his brother Michael something, then it was off to the Disney Store, we finally made it for dinner at TGIF. Mitchel loves eating there. We walked all the way back to the RMH and on the way we luckily found the Dillon's Candy Store where we had a great desert.

Mitchel is really feeling so good and he looks great too.

Yesterday we had a chance to meet with Dr. Cheong, who is the main doctor that truly knows all about the scientific part of the research for Neuroblastoma. It is always encouraging talking with him because he is so optimistic about all the new treatments and how well the treatments are going now. Research is showing such positive results for treating neuroblastoma, the 3f8 has completely cleared so many patients of cancer.

Hope everyone has a great day!

Love to all,

Mary

Wednesday, February 22, 2006 7:49 AM CST

Good morning everyone,

We are here early this morning for treatment. Yesterday's treatment was a little better but the pain is still very intense.

We are hoping to be finished early today so we can venture out and do some shopping. Mitchel has a few places he wants to take his daddy while he is here this week.

We met with Dr. Kushner yesterday and he was very pleased with the way Mitchel's looks and has been feeling. All of his counts look great and he has so much energy. His weight is up to 18.3 kg and his platelets were over 200,00, his hemoglobin is 12.0 and he is 44 inches tall. Everyone has commented on how much he has grown and how great he looks. We are so happy to hear all of those encouraging comments.

We will be having all of his scans next time we come, he will have a head CT, MRI, MIBG and a bone marrow biopsy. We will arrive early this time to have all his tests done instead of staying over for a extra weekend. We will only have 2 1/2 weeks at home this time but this is the only way to get eveything done.

Thank you for checking in on us we wish you all a wonderful day today.

Love to all,

Mary

Monday, February 20, 2006 2:46 PM CST

Hi everyone,

Well we made it here to NYC, our flights were all delayed and yesterday was a very long day but we are here.

Mitchel is just finishing up his treatment for today. He continues to have alot of pain with the 3F8, we are glad the pain only lasts about 10-15 minutes then he sleeps and wakes up ready to play.

Since he had his port taken out they only way to administer his treatment was through a IV in his arm. That went pretty smoothly, he just cried a little bit because he was scared about what they were doing to his arm. He requested a light blue arm wrap and he seems to not even notice that the IV is still in. He will have it in all week and they will take it out on Friday, then they will put another one in on Monday for the next week.

Please continue to pray for us these trips are not easy and can be very stressful for us.

I got to visit with Betty Jo and her friend this afternoon, we had such a great time visiting. She came up and saw Mitchel and gave him a wonderful gift. When she left he gave her a big hug. We miss seeing her and we hope it won't be long before we see her again.

I better go check on Mitchel and daddy.

Love to all,

Mary

Date and Time here

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Thursday, January 27, 2005 8:25 PM CST

Today we are getting out of the hospital and will be going back to the Target house. Mitchel has received his 6th and final round of chemo. He has not really been that sick this time and is in good spitits. We are finally meeting other families with the same diagnosis.

Mitchel will be receiving his stem cell transplant soon. Thank you everyone for all your prayers.

Tuesday, February 22, 2005 8:00 PM CST

We are having a few days of rest before we get started on Mitchel's stem cell transplant. He has put on some weight and eating very well. This is very encouraging because he does so much better with his chemo when he goes into it with good nutrition.

The stem cell transplant will begin Thursday, Feb 24. This is our first go around so we do not know exactly what to expect.

Please keep Mitchel in your prayers.

Monday, February 28, 2005 8:27 PM CST

Today has been a very long day. Mitchel has been feeling pretty good. He told me at 7:oo PM he was ready to take a nap. This did not surprise me because he started his physical therapy today. He was out of his room for about an hour. He played soccer in the hallway with brother, shot some hoops and played a bowling game. Then we went to the playroom where he and Michael played with paint. He was up all day.

Tommorrow is his last day for chemo, Yeah! I have been so worried that his little body can withstand all the chemo. Being a believer in christ makes it alot easier to handle these long days, but doubt somehow keeps creeping in. I search for strength in my faith everyday.

Mike has left for the night and I am here with my thoughts. It can get pretty lonely at night. I had a crying session before he left and we prayed together. I feel much better now.

God is who he says he is! Mary

Tuesday, March 1, 2005 1:53 PM CST

I cannot believe today is March 1. Back in October when all this began March seemed 1000 years away, but here we are. Mitchel just finished his physical therapy and they have just unhooked him from his chemo. He has continously had it since Friday morning. Thank goodness that part is over. His strength can only come from above. Michael is here now and they are playing their game cube. Mitchel loves to have him here, even though they pick on each other.

Yesterday was a horrible day, we find out one of the neuroblastoma patients here, Stanton Haynes, received his angels wings last week. He was one day shy from turning 4 years old. This family has been through so much please pray for them. I cannot imagine the pain they are feeling. God is helping me cope with all the feelings with finding out something like this. It was my first experience with this.

I am reading an amazing book called Believing God by Beth Moore. I can relate to her writing so much in this book. It came one day in the mail last week from a special person, God's timing is so perfect!.

Wrapped in God's love,
Mary

Wednesday, March 2, 2005 11:13 AM CST

I am sitting here with tears in my eyes, I have just read all the messages posted from last night. I am overwhelmed with joy knowing there are so many people that truly care for us. Thank you all so much. We are so encouraged by your messages.

Mitchel is currently having an MRI done on his spine. There were some spots there a while back, we are praying they will not show up this time. I should have an update on the results later today.

This should be a better day for Mitchel, he will have a full day without chemo. Yesterday I was so worried about the way he looked. He had dark circles under his eyes and slept most of the day. About 6:15 he woke up and Mike and I gave him a bath and he started to perk up. He decided he wanted to shoot some hoops so off we went to walk the halls. He made it around the floor 3 times before asking to return to his room. He is gaining his strength back.

We have received so much mail from all of you, thank you so much and keep it coming, this is one of Mitchel's highlights of the day. One letter in particular came yesterday that I wanted to share with you. It came from a family that saw the article about Mitchel in the community spirit magazine. We do not know them but their 4 year old daughter sent Mitchel her allowance that she had saved up. It was $2.50. The meaning of that $2.50 is so rich with blessings. I think this is what the good Lord tries to tell us everyday. Don't look at the quantity but embrace the quality. We are all so richly blessed with just knowing our lord and saviour.

We hope eveyone has a great day!

Embracing my cross,
Mary

Thursday, March 3, 2005 3:22 PM CST

I will start with the good news! His MRI of the spine came back with one spot still showing up in his lower back area. It is still the same size as before which is great news, it did not grow. The place on his hip is completely gone!!!! Praise the lord. The doctors were very excited about the report. They said this last round of chemo he had could take care of the spot on his lower back.

Today started to early, Mitchel decided to wake up at 6:30. The first thing he did was get sick and then it was off to play his game cube. The physical therapist came and got him around 9:30 and he was so excited to go. He told us "I just love to play those games". They make it very exciting for him with alot of jumping and kicking balls. He is now resting.

Tommorrow is the big day for his transplant. We were told it will be around 1:00 PM. Mike and I are going to pray for these cells around that time before they put them back into Mitchel's body. I hope you all can take a few minutes to join us in a prayer at that time. It will be a very specific prayer, those cells need to eliminate any cancer cells left in his body. I believe in my God and know his almighty power.

Something I read today:

Prayer is the key to your total recovery and restoration, As we pray, God washes your heart with the healing water of his presence. Fellowship with your lord will make you whole.

Totally restored by his grace,
Mary

Friday, March 4, 2005 1:48 PM CST

We want to thank you all so much for your prayers! The stem cells are in. The moment only lasted a few minutes. It was a very emotional moment for Mike and I. Before the nurse got started Michael asked the nurse "um nurse are you going to put in the good cells to get rid of the bad ones" he is so concerned about his little brother. He was telling Mitchel all morning, you are going to get your good cells today.

Mike and I stood beside his bed and ask our God Almighty to heal our sons body with these new cells. We felt the presence of your prayers today.

The next phase of the transplant is to get Mitchel's counts up and his strength. That is the longest part of the transplant. We pray for a speedy recovery.

I thought we could have at least one of our birthdays at home but it doesn't look like that is going to happen. Mike's was in November, mine was in January, Michael's is this month and Mitchel's is April 18. If you would like to send Michael or Mitchel something for their birthdays you can send it to: 1811 Poplar Ave, #501, Memphis, TN, 38104. I am sure they would love to receive as much mail as possible to keep their minds off things.

Have a great day!

Mary

Saturday, March 5, 2005 3:27 PM CST

Last night was very hard. Mitchel woke up around 2:30 am and I thought he just needed to go to the bathroom so I pulled the cover back and saw nothing but blood. I was terrified and half asleep at the same time. I could not get to the nurses station fast enough. They came running in and told me it looked alot worse than it is and I thought to myself, maybe to you but definetely not to me. Mitchel was so scared he got so upset he starting getting sick. After getting him all cleaned up he did not want to be alone in his bed so I moved him over to the couch. There is barely enough room for one so needless to say I did not get much sleep. Around 4:00 he needed to go to the bathroom and on our way back to bed he got sick again. The nurses came in and helped me clean him up again. (They are so awesome) He did not want to go back to his bed so we tried the reclyner, this lasted until 6:00 and when I could not feel my arm any longer I knew it was time to make a move. He went to his bed and right back to sleep. Finally back to the couch I went and within a few minutes I hear someone whispering "Mitchel it is time to get on the scales and see how much you weigh today". Oh my what a night. I called Mike at 9:00 and he came right away. We try to give each other as much time to rest as possible.

The side effects are starting to kick in for Mitchel. He has not been out of bed all day. He does not feel good at all. He is border line on having a fever and they have him on medication round the clock.

I still find peace in my faith and know God will never give us more than we can handle. Thank you all so much for your continued prayers.

Michael is at Blue's Clue's birthday bash. His GiGi took him today for a early birthday present. She is leaving tommorrow and Mike's mother is coming in. I just want to say thank you GiGi for taking such good care of us this week. We have been so blessed by having you here.

Mike if you are reading this tonight, I have said a special prayer for you to have a restful night. Love you lot's!

Love to all,
Mary

Sunday, March 6, 2005 9:24 AM CST

Dear family and friends, Mary usually makes the journal entries, but I wanted to to thank all of you for the many prayers and uplifting encourgement. Mitchel has a high fever right now, but won't take his tylenol. When Mary gets here I am going to have to hold him down and make him take it. I cannot bear the thought, but the lord our God will give me the strength, he always does. I just pray he keeps it down. He got morphine lastnite, his throat hurt him and his mouth is breaking down and getting sores. I guess this is normal but, it does not make it any easier on us. Our little boy is hurting, and as all of you know as parents, when your children hurt, you hurt.
I want everyone to know that this ordeal would be unbearable without all the prayers and support that we have recieved. God is doing a mighty and wonderful thing thru Mitchel, it is so inspiring to know that all of you love and care for us. We could not go thru this without him our you. I praise jesus for each and everyone of you.
your brother in Christ. Mike

Monday, March 7, 2005 5:20 PM CST

I awake every morning and thank my Jesus for a wonderful day. Mike and I did not pick this journey but it was given to us and we pray each day that we handle it with courage and strength.

Mitchel is having a better day today. He does not talk because it is too painful. He points to the things he wants and has figured out how to comunicate without talking. He continues to not take his tylenol, which would help him with feeling better. His fever is up and down.

When I look at him I wish I could take his place. It hurts so bad to see him in pain. I hope he does not remember any of this when he gets older. Things should be getting better over the next few days.

Michael is happy playing with his grandma from Kansas. She arrived today.

I want to say a special thank you to the people from German Town Baptist Church. You all have been so wonderful to us. The meals you are providing for us during this difficult time have been such a blessing. I will be calling the ladies to go to lunch soon.

Encouragement is such an important ingredient in anyone's life no matter your age, so thank you all so much for writing to us and caring so deeply about our lives.

Believing in our God, he is who he says he is.

Mary

Tuesday, March 8, 2005 4:53 PM CST

Oh what a day this has been. First I did not sleep at all last night. Mitchel's fever was high and his blood pressure went way down. We had a doctor and nurse from ICU in here around 3:30 AM. Then it was one thing after another. I hope tonight will be a better night for Mike, it is his turn to stay.

Mitchel has been fighting a high fever all day. He still refuses to take his tylenol and so we just have to put cold towels in his head and under his arms. This seems to do the trick. He still is not talking and is visibly in alot of pain with his mouth soars.

This is the hardest part of the treatment so far, we are counting down the days to get out of here.

We just keep looking up and know that we are not alone.

Love to all,
Mary

Wednesday, March 9, 2005 5:57 PM CST

Today has been a much better day. Mitchel is feeling a little better. He has been through so much since September 30. Everyday he gains strength. He has not had a temperature all afternoon. Praise God! He still does not have any white blood cells yet and this makes him really tired. We are expecting his white blood cells to go up in the next few days. His mouth sores seem to be better today.

I felt so much strength today, right when I woke up I knew today was going to be a great day. Mike and I are praying together alot more these days and it is such a blessing to have that kind of relationship with your spouse. I would not want it any other way.

I cannot tell you what a blessing my mother-in-law has been, she is here for a few weeks to help us. She has taken alot of the stress off of Mike and I. Thank you momma!

We continue to receive the most encouraging words from around the country. Thank you all so much! It sure makes this journey alot easier.

I want to share a few lyrics from a song that a friend from our church sent us it is so beautiful:

Lord Almighty,

There is none like You
No one else can touch my heart like You do
I could search for all eternity long
And find there is none like You

Your mercy flows like a river wide
And healing comes from Your hands
Suffering children are safe in Your arms
There is none like You

I can picture those healing hands from above. Those are the hands that have carried me so many times during our journey. God reminds me everday that his hands are always there.

In his hands forever,
Mary

Friday, March 11, 2005 3:25 PM CST

Hi everyone!

Mitchel is having a much better day. He has actually smiled today and has began to utter a few words. The doctors have commented on how great he is doing. His mouth and throat sores are still causing him some pain but he is such a strong little guy. We keep chapstick all over his mouth, the sores can spread to his lips. Grandma Bailey went to Walmart and bought him enough Dora movies to keep him busy all afternoon. This seems to be his favorite character at the moment. The last couple of days his favorite place to sit and watch TV has been the couch. It gives him another place to be besides his bed.

Mike and I are doing great. We take turns staying at night with Mitchel. Michael is also doing great, he is loving having his grandma here. You definetely have to work as a team taking care of Mitchel. It is round the clock.

I know alot of you are keeping up with us from this website. Please take a few minutes to send a message to Mitchel he loves to hear all about how people care and love him.

We are just waiting for his counts to come up to 1000. Right now they are at 0. We can leave the hospital when they reach 1000 for 3 consecutive days.

Thank you all for your prayers. We love all of you very much.

Please say a prayer for our special friend Zachary Russo. He will be starting another round of chemo this Saturday and we really need it to start working. His website is zacharyrusso.org. He is a cutie pie!! His parents are Betty Jo and Dave, please lift them up during this difficult time.

Hope you all have a wonderful day!
Mary

Sunday, March 13, 2005 9:58 AM CST

Mitchel's counts have come up to 200!!!! Yeah, as you all know this is very significant in his recovery. They will continue to rise and we should be getting out of the hospital soon. We have been waiting for this news for a what seems like forever.

Yesterday nothing we did was right Mitchel was so cranky. It was really hard on Mike because Mitchel has attached himself to his dad in a way I have never seen before. Mike can hardly go to the bathroom and be gone from the room without Mitchel getting upset. Mike is very tired right now. I am here in the room and Mike has left to go sleep.

Thank you all so much for your continued prayers. We are strengthened daily. God has given Mike and I so much peace to get us through this. We still worry as any parent would but we know that God is in control. As we continue through this journey we ask that you all stay with us in prayer. It will not be long before we return to our home.

Please continue to pray for Zachary. He started his chemo yesterday and we need this treatment to work. He will be on this chemo for 5 days. I gave you the wrong website before so here is his correct website: www.zachrusso.org.

Missing everyone,
Mary

Monday, March 14, 2005 5:19 PM CST

Hi everyone,

Mitchel is feeling so much better today. His count is up to 1000 and he able to talk alot better. The doctors may even release us as early as Friday. We will keep everyone posted on that.

Mike and I are getting so tired. I think we will both sleep for a week when we finally get home home. We will have to take Mitchel to the hospital twice a day for a while so he can continue his medicine. Almost all his medicine will have to be given through his line since he will not take it by mouth. Those Baughman genes are stubborn! Ha!

I spent most of the day with Michael and we had so much fun. He has been such a trooper through this whole thing.

We miss and love all you guys! Mary

Tuesday, March 15, 2005 12:37 AM CST

Happy Day to you all!

Mitchel's counts are up to 2100 today. He is feeling really good and his voice is almost back to normal. We are probably going to get out on Friday. Yeah! Just in time for Michael's 6th birthday, on Saturday. I cannot believe he will be six. I wish we were at home to celebrate his birthday. We will definetely be celebrating but it won't be the same without all his little friends.

Mitchel's birthday is April the 18. I was hoping we would be at home for his but we will probably be here. He will be 4. He should be able to start pre-k at Ranch Heights in August depending on what the doctors recommend.

What is next for Mitchel is radiation. I hate that word. I am so concerned about that procedure, the only way he would not receive radiation is for his scans next week to show absolutely no cancer. Mike and I will be knealing in front of our heavenly father asking him to keep Mitchel from radiation. But we know God is in control of everything and he will guide us through whatever happens.

There is a wonderful person who keeps us all encouraged during this difficult time and I wanted to share some of her thoughts from her website. Her precious baby earned his angel wings in February, and I know from her words that the pain has at times been unbearable. I keep her and her family in my daily prayers. Thank you Tina!

If God brings you to it, He will bring you through it.

Happy moments, praise God.

Difficult moments, seek God.

Quiet moments, worship God.

Painful moments, trust God.

Every moment, thank God

Thank you all so much for your encouraging words and prayers. If you want to wish the boys a happy birthday their address here is :

1811 Poplar Ave
#501
Memphis, TN 38104

Hope you all have a great day! We love and miss you all very much!

Mike and Mary

Wednesday, March 16, 2005 10:36 AM CST

Happy Wednesday!

Praise God, Mitchel finally got out of his room today and walked the halls and rode his tricycle. We have been waiting for this day a long time. His counts are 4000 today. We are getting out either tommorrow or Friday. I was trained last night on how to hook up his TPN which is his nutrition. Since he is still not eating on his own he will need this to help him stay steady on his diet. Gradually he will start to eat again on his own and we can get him off of it.

We have journeyed through this with you all and we thank you so much for your prayers. God has been with us the whole way with his tender love and abundant mercy.

I read something this morning that I wanted to share with you all. It is from a book I am reading by Beth Moore called Believing God. It talked about reading the word of God, as we study the word don't just read it but receive it like a famished man at a feast. Whether we imagine inhaling it or devouring it. My prayer this morning was to allow the word of Christ dwell in me richly. I ask God to help me grow in confidence that every word abiding in me will have powerful effects. I have never really thought about it that way. The word is so powerful and can be used in any situation that we have a need, no matter how big or small. The issue is to just use it, don't leave it on a shelf to collect dust. I have to admit that I have been guilty of this. God's grace and forgiveness is so awesome, where would I be without it.
Hebrews 4:12 is a verse I am putting in my heart, when we receive God's word, it invades every part of our being, even the marrow of our bones and the motives of our hearts.

Please take a minute today to just think about how you read the word, is it just reading or are you devouring it like a famished man at a feast.

Mike and I are standing firm on our foundation and trusting God together to work in Mitchel's life.

Reading and believing,
Mary

Thursday, March 17, 2005 6:47 AM CST

Good morning, Praise God for this wonderful day. Mitchel's ANC is 7100 and his white blood cell count 9.3 This is an answer to all of our prayers.
When I was a little boy my heros were John Wayne, Terry Bradshaw and superman. Little boys grow up and I forgot about them, but now that I am 40 I have a new hero and I wanted to tell all of you about him. He is my son, Mitchel James Baughman. Throughout all of this Mitchel has never complained, not one time. I wish I could say that. He has shown me what true toughness is. He has an inner strength and spirit that could only come from God. I just wanted to tell everyone how thankful and proud I am to have Mitchel as my son, and my hero.

please keep praying, Mike

Monday, March 21, 2005 3:28 PM CST

Just wanted to give everyone the good news from Memphis. Mitchel got out of the hospital on Friday and we had an awesome weekend. It felt so good to be together again in our apartment. We missed that so much!

Mike has returned to Bartlesville today and will return on Friday. He had to get some work done. I will need special prayer as I hold the fort down here with both Michael and Mitchel.

Mitchel has several scans this week and tommorrow he will have a trial run for his radiation. They will have to sedate him for alot of procedures this week. As soon as I know more details about how radiation works I will let you know. This part of his treatment has always worried me.

Thank you all so much for your letters and packages. The kids have been enjoyed them so much. They received two awesome easter baskets from our church. I cannot tell you how much they enjoyed them. They were all smiles. Michael had a wonderful birthday party. We celebrated just as a family but it was really fun.

Also, thank you all for your continued prayers. We love you all so much.

Happy days are here!

Mary

Tuesday, March 22, 2005 2:35 PM CST

Hello Everyone,

Just wanted to give you a quick update. I met with the Radiologist this morning and he has indicated that Mitchel will need minimal radiation. He has a place behind his heart and in front of his spine that they will need to radiate but other than that all other places either cleared up or so small it will go away with the chemo that he had before his transplant. His jaw bone has completely healed on its own and does not need radiation and he also had a couple of places on the top of his head that have almost dissappeared. This is such exciting news! I really did not want him to have any radiation but I know he will need a little to clear everything up for good.

He is currently getting another cat scan and MRI right now, I should have more information about that this afternoon.
The Doctor is very informative which I appreciate so much, this is such a worrisome time for me.

Michael is really being good and that has helped me alot. Our schedule is really lite for the rest of the week.

Mike is home working and getting some things done around the house. It won't be long before we are there. Mitchel's immune system will still be weak and it could take up to a year for it to fully recover. There is a bacteria that can grow in carpets and on dust through vents so we are wanting to put some faux wood floors down, so far we can afford to do the kids room and our room that is off the back door where alot of dirt is tracked in. We want to have our vents cleaned out and find some kind of clean air system that is not too expensive. Infections for cancer patients are very common and there are some things that can be done around the house that can help prevent some of that. We are trusting God with our finances and he knows excactly what we need. My wonderful sister is going to clean my whole house, wiping down the walls, cabinets and any smooth surfaces that has collected dust. Thank you Britton so much.

Thank you all for your daily prayers. I feel uplifted every day.

Love to all,

Mary

Tuesday, March 22, 2005 5:53 PM CST

We are doing just fine in Memphis. Mike will be back on Friday afternoon. The boys were just informed that we have a Easter egg hunt downstairs at 6:30 so they are very excited.

I did meet with the doctors again this afternoon and Mitchel will need radiation on his head. He has both jaws marked for radiation and a place on the back of his head. At first they thought he would not need radiation to his head but they want to clear it once and for all.

He will start next Thursday and have radiation everyday for two weeks. They will have to sedate him everyday because he will not be able to move during the procedure. The actual procedure only takes about 15 minutes so the sedation will be the longest part.

Well we are off to hunt Easter eggs!

Take care,

Mary

Wednesday, March 23, 2005 4:43 PM CST

Well today has been pretty easy. We only had a few appointments at the hospital. Mitchel is taking all his medicine here instead of the hospital. We did have to take him in every morning for an hour and two hours at night. He is really tired today and not feeling that great. His stomach has been hurting which could be from the chemo still. They are doing a test tommorrow for that. Nothing serious.

Mike is still in Bartlesville. He will return on Friday. We miss him so much. Michael had a first last night, he lost a tooth. He was full of questions, especially about the tooth fairy. He wanted to know how the tooth fairy knows his tooth fell out. He asked if they wear a watch that tells them his tooth fell out. He was very excited to see five dollars underneath his pillow. I don't think he will buy into the tooth fairy for long.

Mitchel is still hooked up the TPN which is his nutrition and food right now. He has tried to eat but the chemo really does a number on your taste buds. Nothing tastes the same he says. He can't even eat his favorite things.
He should be eating within the next couple of weeks. Some of the kids stay on TPN for months. I pray Mitchel will start eating on his own before that.

We will miss everyone Sunday at Church. Our first Sunday to miss Easter services. We have an awesome church back home, they are our family.

There is a wonderful church here that has adopted us, German Town Baptist Church. They have provided meals and called us just about every day to see if we need anything. A couple of ladies from there made Mitchel a prayer quilt and he loves it so much. Thank you all so much!

We have a pretty light schedule for the rest of the week. Mitchel will have another hearing test on Friday and we will know more about his need for hearing aids. They have already told us he will need them but maybe only for one ear.

It won't be long before we can leave for home. The count down is on. We cannot wait to see everyone back home and be with our families. What a celebration that will be.

Have a great night!

Mary

Thursday, March 24, 2005 10:16 PM CST

Hi everyone,

We had really nice weather today here in Memphis. This weekend is suppose to be real nice too. The Target house is having a easter egg hunt on Sunday. We are very excited. This will be Mitchel's first year to really get into the egg hunt. He keeps telling me I just loves those eggs. We made our eggs tonight and had a really great time. We missed sister though, this is our first year to do eggs without her. Wish you were here!

Mitchel counts continue to go up on their own and he is feeling really good. He woke up at 6:30 this morning ready to start playing. He went all day and did not slow down until he went to bed. His stomach did not hurt as bad today, thank you Lord.

I wanted to share a letter we received yesterday from the surgeon, Dr. Ranee, that performed Mitchel's surgery in Tulsa. It is something that Mike and I have been trusting God with all along. Our insurance company only paid a minimal amount to Dr. Ranee, so I wrote a letter to the insurance company asking them to reconsider their payment and two weeks later they sent an additional amount towards the surgeon bill. Last week I got a call from Dr. Ranee's office and we spoke about the remaining balance, they told me the office manager would be sending us a letter in a few days. Well Mike called me yesterday and told me that we have a zero balance with them. They wrote off the balance and accepted what the insurance company sent them as full payment. God has once again shown us just how great his love is. Thank you Lord!

The boys have received so much mail in the last week, thank you all so much for making their days go by a little easier. They run to the mail box everyday. When I return home I am going to print off all the messages on Mitchel's website and make a book for him to have forever. I know he will love to read it someday.

Mike will be back tommorrow, yeah! This week has gone by pretty fast. God has given me patience and alot of strength to make it here by myself this week. They boys have been extra good. Thank you all for your prayers!

I spoke with Mike this morning and he told me he went to church last night and got lots of hugs from everyone. He said he was bringing all those hugs back for me and the boys. We cannot wait for him to get here.

Mitchel hearing test is tommorrow. I will let you know the results soon. He is such a strong guy. Every night I have to hook him up to his nutrition and his antibiotics. He has three things going at once, the pumps fit into a sponge bob back pack and he has all the tubing to deal with. He just drags everything along beside him as he plays. Never once has he complained. When I see him playing and dragging that bag around I feel so proud that he has such a good attitude about it all. He has taught me so much about life. What a guy!

I have often mentioned our little friend Zachary. He and his mom came over today and played with the boys. Please continue to pray for him, he is having his scans on Monday to see how he is responding to the chemo. I love spending time with his mom, Betty Joe, we have alot in common with our boys. Zach's website is www.zachrusso.org.

Sorry this is so long tonight, I guess I had alot to say. I want to thank you all so much, you are such an inspiration to me.

Missing Mike,
Mary

Saturday, March 26, 2005 11:00 AM CST

What a great day today is. We were all very excited to see Mike yesterday. The kids loved on him all night. Mike said he could see a big difference in Mitchel since he saw him last. He is feeling really good.

The boys are excited about the Easter bunny coming today at the Target house. Mitchel has asked every hour is tommorrow Easter. He wants a Dora backpack and lots of balls in his Easter basket. Michael just wants something fun. Michael lost another tooth last night. He sure wiggled this one out alot faster after learning what the tooth fairy is all about. We forgot to put his tooth under his pillow last night, oops! We will try again tonight.

Mitchel did great with his EKG test and hearing test. He loves the way they test his hearing, they make it really fun for him. He has lost more of his hearing but it is still considered only moderate loss. He has great hearing for surface sounds but has lost alot of his high pitch sounds. I have noticed him saying what alot more and yesterday he pronounced zoo as doo. The speech pathologist will be working with him every week to help him maintain the vocabulary he already knows. He will get fitted for them next week.

Thank you all so much for sending all the goodies back with Mike. We appreciate it so much. God has made sure we are taken care of and it is from all your encouragement and kindness.

Hope you all have a wonderful Easter!

Love,

Mike, Mary, Michael and Mitchel

Monday, March 28, 2005 9:01 PM CST

Happy Monday,

We are happy to report Mitchel is doing great! He had two doctor visits. One from the transplant clinic and one from his regular doctor. He has officially been released from the transplant clinic. We will be back to D clinic and see Dr. Santana on a regular basis. It was great to see you all again today, we missed you!

Mitchel ate his first real food today since February 25. Thank you McDonalds. He wanted a hamburger just like he always orders them, hamburger plain with cheese. He also had some cheese squares and alot of milk. I think he will be off the liquid nutrition soon. Thank Goodness!

He had a cat scan today and tommorrow he will have a bone marrow biopsy. He has a brain and face scan this week also. Next Monday we will be having a meeting with his doctor to discuss Mitchel's progress and what to expect for his future treatment. We will have all the results from this weeks scans then as well. This will be a long week!

The Target house went all out for the Easter egg hunt yesterday. The kids had a wonderful time. Eggs were everywhere.

I know I keep saying this but we cannot wait to get home. Mike will be making at least one more trip back home next week before we all come home.

Mitchel was fitted today for his hearing aid. This is going to be somewhat of a challenge. Getting a 3 year old to wear a hearing aid. Definetely need prayer for this one. We asked the Dr. today about Mitchel going to school, church, etc when we get home. There is no problem with him starting school because it is so far out from the actual transplant date, but we will have to be very careful for the next few months exposing him to germs. We will just have take one day at a time.

Well we are so happy to be sharing this experience with you all. Thank you so much for all your prayers. We love you all.

Please keep our little friend Zachary in your prayers. He is having alot of tests this week also.

Love to all,

Mike and Mary

Tuesday, March 29, 2005 10:20 PM CST

Today was a really good day. Mitchel had his bone marrow biopsy around 10:00 and after we got back to the Target House he was ready to play on the playground. The weather here was great! The sun was shining and the kids played all afternoon. It amazes me that Mitchel can wake up from being sedated and be so energetic.

He has a brain and face scan tommorrow and we meet with the radiologist in the morning. Mitchel starts his radiation on Thursday at 1:00. He will be sedated everytime he has radiation.

There are some wonderful ladies that are taking me to lunch on Saturday. They are from German Town Baptist church, I cannot wait to go. They have been so nice to me, through their prayers and encouraging words. Thank you everyone from GBC.

Zachary has a new website it is: caringbridge/pa/ilovezachary.com

I hope everyone has a great day tommorrow!

Counting the days,

Mary

PS I wanted to share this poem that I came across. It really expresses how I feel sometimes.

~ He's My Son ~
by Mark Schultz
(copied from another NB child's site)

I'm down on my knees again tonight
I'm hope'n this prayer will turn out right
See, there is a boy that needs your help
I've done all that I can do myself
His mother is tired
I'm sure you can understand
Each night as he sleeps
She goes in to hold his hand
And she tries
Not to cry
As the tears fill her eyes

Can you hear me
Am I getting through tonight
Can you see him
Can you make him feel all right
If you can hear me
Let me take his place somehow
See, he's not just anyone, he's my son

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God, who he needs right now is you
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired
And he's scared
Let him know that you're there

Can you hear me
Am I getting through tonight
Can you see him
Can you make him feel all right
If you can hear me
Let me take his place somehow
See, he's not just anyone, he's my son

Wednesday, March 30, 2005 9:06 PM CST

Can you believe today is Wednesday already? Where does the time go around here. This was such a great day, we were able to play outside for a while. Mitchel is feeling really good these days. A little sore from his procedure yesterday but he is hanging in there.

He will have a cat scan tommorrow in radiation, they are not ready yet for his actual treatment, but are working in that direction. The spot that Mitchel has in his chest is close to his lung and heart so they are working on getting the exact spot of where the radiation needs to go. He is scheduled to start his first treatment on Tuesday. The only places they will do radiation are his right cheek and his chest area. They originally thought they would also do his left cheek and back of his head but those places have somehow dissapeared. Thank you Lord, I know God had everything to do with that.

The boys are getting very excited about returning home. Mitchel and Michael ask us to show them the calendar everyday and count with them the days left. We are still looking at the end of April. The boys are playing very well together, they are great friends. Michael has been such a awesome big brother always looking after Mitchel.

Tommorrow we will try and take the kids to a park where they have some animals. Hopefully the weather will be nice. Mitchel has a radiation appoinment that involves him being sedated at 1:00 so we will have to go in the morning.

I cannot wait to get home and take the boys to all of our favorite places. They will be so happy to see their friends, Michael talks about his friends from school. He told me today that he will probably meet some new kids next year at school that he did not meet this year. Mitchel is so excited to be in Mrs. Culver class next year. Michael had her for Pre-k and Mitchel always wanted to stay and be apart of her class. He will have his chance now.

God continues to bless us everyday. We are so humbled by his gracious love and mercy. Thank you all for your continued support through prayers. We miss you all so much.

Thank you Cheryl, my next door neighbor, for sending me my mail. We have the best neighbors at home, we miss you guys!

Feeling homesick,

Mary

Friday, April 1, 2005 1:37 PM CST

Happy Friday,

We are so glad it is the weekend. We really don't have anything planned just to hang out as a family. It has been raining all day so we are not going to the park until tommorrow.

Personal message from Mitchel below:

mitchel cyyyyyyyyyyyyyyyyyyzzzzzzzzzzooooooooooooooooooooooooooooo!

Mitchel had an appoinment today for physical therapy. He did great, going up and down the stairs, kicking the ball, running and hopping all around. We then went to blockbuster for video games and a spongebob and Dora movie. Hopefully the weather will clear up soon.

I have added a hug counter and a count down ticker for Mitchel's birthday on his webside, hopefully you noticed it. He loves to look at his hug count and watch the turtle move in the direction of his birthday countdown. He also loves to read his messages from you all, please keep sending them.

Well we are going to have a very relaxing weekend so we are looking forward to it. I am going to lunch tommorrow with some ladies from German Town Church. It will be good to get out with such encouraging women.

Thank you all so much for your prayers and encouraging words. We will be home soon.

Hope you all have a great weekend also.

Mike, Mary and the yonkers!

(this is what Mike calls them, they love it)

Monday, April 4, 2005 9:01 PM CDT

This is going to be a difficult journal to enter tonight. We found out that Mitchel's bone marrow showed increased neuroblastoma. This was not at all what we were expecting, he has been doing so well. Before his stem cell transplant his bone marrow showed less than 10%. God only knows why the cancer has increased in his bone marrow. For now we are continuing on with his radiation as planned to start tommorrow. This will consist of 12 treatments and he is also starting his acutane treatment tommorrow. It is taken orally and he will have 14 days twice a day. This is a very high dose of vitamen A to keep the cancer from growing. The acutane was something he was already going to start but not until after radiation. Where do we go from here:

Mitchel will have a MIBG scan next week, this is a very specific scan that pinpoints the neuroblastoma in the body. So far all scans have showed his cancer to be reducing significatly, even some places gone totally. But clearing solid tumor places and clearing the bone marrow are two different things. The radiation will not effect his bone marrow, it is specifically targeted for his chest area and his right cheek, where there is a minimal amount of neuroblastoma showing up.

He will have a bone marrow biopsy in two weeks and see where we are at that point. Two things will happen:

These are also specific prayer requests:

1. If the bone marrow clears up he will continue on the acutane as planned for 6 months.

2. If the bone marrow comes back with neuroblastoma we will stop the acutane and begin a monoclonal antibody therapy immediately. We do not know much about this study but it has been successful in treating patients that are in the same situation as Mitchel right now.

3. This particular study is not available here at St. Jude, so Mitchel's doctor is working on getting us in a study somewhere else. We do not know where we could be going yet, but we will let you know as soon as we know. We pray that it is the best place possible for Mitchel.

Mike went ahead and returned to Bartlesville as planned, he needed to get alot of things done at home. He will return on Thursday. We are staying in very close contact during this time and we both are keeping each other strong.

I really cannot share on what I am feeling right now, I am still trying to let this information sink in. We are both hurting right now as we try to make sense out of all this. Please continue to lift us up in your prayers.

Our faith will not waiver, we will again make this journey with God every step of the way. I just got a card from Zachary's mom who came by tonight to check on me, she writes a verse to remind me of this:

Do not fear nor be dismayed, for the Lord you God, is with you wherever you go. Joshua 1:9

Thank you Betty Jo, you are a true blessing in my life.

Thanks again for all your prayers, please continue to pray for our strength and courage.

Believing in Hope,

Mary

Tuesday, April 5, 2005 11:02 PM CDT

Today was a much better day. As I was thinking about what I wanted to say tonight it came to me that I should start off with sharing a few blessings with you all.

As you all know Mitchel had an appointment with radiation today, he officially starts the radiation tommorrow, anyway he had to be sedated and his appointment was not until 9:45 am which means he could not eat anything after 1:45 am the night before. He decided yesterday that he was really tired and went to bed around 6:30, he skipped his dinner and I was worried that he could not eat anything the next day until after lunch. What are the chances he would wake up in the middle of the night and want something to eat. Well when I went to be I just prayed, Lord this is too heavy for me to carry I am going to bed and cannot worry about it any longer. At exactly 1:15 am Mitchel sat up in bed and said I am hungry where's my snack. I was so amazed when I looked at the clock it was like an alarm clock went off. I said what are you hungry for and he gave me his standard answer, "I don't know let's see what we got". So off we went to the kitchen and he ate 2 yogurts and some strawberry milk. He finished at 1:40 with 5 minutes to spare. Thank you God for that blessing.

As most of you know Mitchel does not like to take his medication by mouth. So his accutane was going to be a problem, I thought. It is a gel pill that has an oily substance in it, yuk!. I tried to teach him how to swallow but he just could not do it. After his radiation appointment today we went and picked up the pills, I was curious to know just how big they were. Well he has to take two every morning and every night. We got back to the apartment and I sat on the floor with him and tried to talk him into taking it in his milk. The pill really does not disolve so I knew this was not going to work, most of it was sticking to the side. I worked with him for about 20 minutes and he could not get it down. I finally just prayed out loud, Lord this is too big for me, please help me through this. Well within 10 minutes he gave in and just bit into the pill, he continued to chew it until he could swallow it with milk. I instantly knew God had answered my prayer. Tonight I told Mitchel it was time for his medicine and he came right over and we sat down together within 10 minutes they were both chewed up and swallowed. Thank you God for that blessing!

We went to the zoo this afternoon. The boys were all smiles. The first stop was in the gift shop. They love that place. The weather was perfect and we had a wonderful time. We came back to the apartment for 30 minutes and then it was off to the playground. Mitchel had so much energy today. He just loves life! Thank you God for that blessing!

My husband called me several times today to check in, but one special phone call was just to tell me he loved me and missed me. Thank you God for that blessing!

Please continue to pray for a complete healing of Mitchel's body from cancer. Also, please pray for Michael. Even though he is well taken care of with all our love he must feel sometimes that he is confused about what is going on. He is such a great big brother! He came over today when I was trying to get Mitchel to take his medicine and said let me try and make him laugh, maybe that will help him take his medicine. I just wanted to cry, that was so sweet of him. Thank you God for Michael he is such a blessing, thank you God for Rachelle, who is patiently waiting for mom to come back home and thank you God for Mitchel, I love them all so much.

Your prayers have once again lifted us up during these tough days. Thank you all so much. I was so touched by all your messages. My tears were just pouring out as I read over them. Please keep them coming.

Believing in Mitchel's miracle,

Mary

Wednesday, April 6, 2005 7:57 PM CDT

Greetings from Memphis everyone,

It has rained all day here in Memphis. We have been busy inside and the boys cannot wait for the rain to stop so we can go outside again.

Mitchel started his radiation today and so far he has not showed any signs of side effects. I prayed over him last night and again this morning as we waited for the nurse to wheel him in the radiation room. This will be my routine every night and morning.

As the nurse started to interview Mitchel about what time he ate last he kept asking where is the milk for my buddies. His buddies are his lines that come out of his chest, he has two, and the milk is the sleepy milk. He loves it! They let him push the button to start the milk, he is so interested in how it goes into his line. He tries to fight going to sleep but finally gives out a big yawn and goes to dream land. He has been going all afternoon. Him and Michael play so well together.

Mike will be home tommorrow, Yeah, we miss you so much!

I will keep it short tonight, since last night was so long, goodness I had alot to say.

Thank you all for your messages today they are so encouraging. I need so much of that right now!

Missing you all,

Mary

Thursday, April 7, 2005 10:53 PM CDT

Today was really a great day. The boys were so good. Mitchel had his radiation and we returned back to the Target house around 12:30. They played all afternoon, I took them to Walmart and then we got a bite to eat at Olive Garden. Daddy returned home around 5:45 and the boys were so excited to see them.

Mike and I decided we all needed to get away for the weekend, so we are going to St. Louis, Mo tommorrow. Mitchel will be finished around 3:30 pm with his radiation and his scans, then it's off for the weekend. Yeah!

We want to go to Six Flags but we thought some of the rides would make Mitchel sick so we are going to a Cardinals game and St. Louis Zoo. Just to get away will be so much fun!

We should find out on Monday more information about what the next step is for Mitchel. We will let you know as soon as we find out. I have asked God for patience, it is so hard to wait sometimes.

I have a special prayer request tonight, my mother (Laura-Step mother) lost her sister today in a car accident. My dad called me around 6:30 this evening to let us know. I checked the website this evening around 7:00 and my mom had posted a message encouraging us during this hard time. About 45 minutes after she entered her message to us she got a call about her sister's accident. When I was reading her message I felt so overwhelmed with saddness for her. She did not know at the time of entering her message about what would occur in just a short time. She now is dealing with this difficult loss. Please pray for her tonight that the same encouragement she was giving me will multiply back to her. Her sister's family needs alot of prayer also, she had a 14 year old son and 3 older children. They all are hurting tonight.

Thank you all from the bottom of my heart for all your prayers. We believe that Mitchel will be healed by our almighty God. We trust in his timing, for he knows and is in control.

Trusting in him,
Mary

Sunday, April 10, 2005 5:21 PM CDT

We made it back to Memphis, what a weekend. We had so much fun in St. Louis. The kids were so excited to just out of Memphis for a while.

We met up with some of Mike's family, it was so great to see them all. Thank you guys for a great weekend, we miss you already.

Saturday we headed to the St. Louis zoo and it was so crowded. Mitchel did not last long, he is not into crowds at all. We went back to the hotel and the boys played video games, Michael swam, and they loved to jump on the beds in our room. Later that day we went to play putt-putt golf and rode the go karts. The kids were all smiles. We got up this morning and headed back. They are still going, it amazes me how much energy Mitchel has had lately.

He will have a really busy day tommorrow starting at 7:00 am and finishing around 2:30. The rest of the week will be pretty easy. We hopefully will find out more information about Mitchel's next phase of treatment tommorrow. He had a scan of his spine on Friday and has several other tests this week. He is still taking his medicine, but is a little reluctant than he was before. He still gets it down and that is all that matters. I know he hates being the only one of us taking his medicine.

Hope you all had a great weekend. I will try and upload some pictures from our trip tonight.

Please pray that Mitchel will respond to his medication and his bone marrow will be clearing up right now! We want to go home.

Love to all,

Mary

Monday, April 11, 2005 6:37 PM CDT

Happy Monday,

It has been raining here all day long. Makes it really hard to get out and be at the hospital at 7:00 am. Mitchel had a full day today. We finished his day with a appointment in D clinic. Mitchel will continue on with his accutane and radiation, his last radiation treatment is Thursday, April 21. The Memorial Sloan Kettering Childrens Hospital in New York is where the antibody 3F8 study will take place, so we could be going there sometime in May. We will know something more definite after his bone marrow biopsy which is scheduled for the end of April. We did get the results of his spine scan and the spot that was there is gone. His HMA VMA test results show a much lower marker level. They can check his urine for these tumor markers.

We really have to trust and let God be in total control. Waiting on the Lord can be harder at times than others, depending on your situation, many things start to run through your mind. There is no better place to go for comfort than to our Lord and Saviour while we are waiting for such an important answer.

2 Corinthians 4:18

"So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal".

An Okie friend I have met through our websites sent me a card with this verse in it. Her son, Xander, is a patient at Children's hospital in OKC. Thank you Ricki Lea for sending me such an encouraging card. (caringbridge/ok/xander)

The unseen is what we want to see immediately but while we wait and trust in God we can seek his wisdom and continue to pray faithfully to him.

Please continue to pray for all the St. Jude families and many others, we are not alone in our situation.

Seeking his wisdom,
Mary

Wednesday, April 13, 2005 9:29 AM CDT

Hello Everyone,

Just wanted to give you all a quick update. Mitchel's MIBG scan has been rescheduled for next Thursday. His bone marrow biopsy will not be until the 28. We are still not sure when we will leaving St. Jude.

He continues on with his radiation and his Cis-Rectnoid Acid pills daily. His last day of radiation is April 21. He has been feeling so great, with lots of energy.

Mike will be returning next week to get some work done. Mike and I along with Zachary's parents are having a birthday party this weekend for the boys. It will be so much fun to see them together celebrating their 4th birthdays. Zachary's birthday is today and Mitchel's is on Monday.

Hope you all have a wonderful day!

Love to all,

Mary

Thursday, April 14, 2005 9:58 PM CDT

Hi everyone,

We had a wonderful day today. After Mitchel woke up from his daily nap with radiation we went to the zoo. It was so nice out. The boys had a great time.

We are looking forward to this weekend, not much planned except for Saturday we are having a party for Zachary and Mitchel to celebrate their 4th birthdays. We will relaxing most of the weekend. Next week could be our last week here, we are still waiting to hear when we will be leaving.

God has given me so much peace about this whole situation, I am waiting on the Lord to show me the next phase of our journey no matter where that may lead us.

Thank you all from German Town Baptist Church for continuing to call and encourage us, we are so blessed to know you all.

Tommorrow a lady from Make a Wish Foundation will be visiting us to interview Mitchel for his wish. Of course he knows exactly what to say, Disney World!!! He is very excited about going there. We are just not sure when we will be able to go. We may have a few weeks in between treatments coming up next month.

I want to thank everyone involved in helping my sister Britton do such a wonderful job getting our house ready for us to return home. You all are awesome!

Hope you all have a blessed day tommorrow!

Love,

Mary

Friday, April 15, 2005 6:23 PM CDT

TGIF!!!

We are looking forward to a very relaxing weekend. Mitchel has been feeling amazingly well all week. No serious side effects from the radiation. He has a little dry skin on his chin and forehead, we put on a little lotion and he is good to go.

His ANC count is only 600 right now so we are not getting him around crowds. It has been 600 since Wednesday so it seems to be holding steady for now. We will recheck his counts on Monday.

We are cancelling the party for tommorrow because Zachary has what looks like an infection in his arm where they put his little port for his G-shot. He also was running a fever so they had to admit him into the hospital for observation. Hopefully he will be out before the weekend is up. Get well soon Zach! Please send him an encouraging note on his website: caringbridge/pa/ilovezachary, it is on one of the links listed below.

Mitchel had his interview with Make-A-Wish today, Brook came by and she was really nice. When we asked him what he wanted for his wish he said to take a trip. I said where and his answer was "to a hotel where grandma is". I thought that was so sweet. He just spent last weekend in St. Louis and his grandma Bailey was there. They are very close. Anyway, his wish is to go to Disney World and he wants to stay in the Animal Kingdom Hotel. Mitchel loves animals and this would be the perfect place for him to stay. We are not sure when we will be going, hopefully it will not be long.

We are getting ready for Mitchel's birthday on Monday. He has changed his mind 3 times on his theme. It started out as hot wheels, then Dora and now he has settled on Soccer ball theme. Party City had soccer ball cups, plates and napkins, he really liked my idea of having a green table cloth for the grass. Several times a day he wants to look up his website and see how far the turtle has moved. He counts his hugs and loves to read his messages.

Since his favorite color is green I thought it would be fun for us to wear green t-shirts Monday for his birthday. We will take pictures and put them on his website. He has received so many packages this week, thank you all so much. It has put a thousand smiles on his face, Michael has not been forgotten, he has received packages too.

Thank you all for your continued support through prayers and lots of encouragement. We have been carried most of the way through this journey, God loves all of us so much.

Next week will be a busy week as we move closer to knowing what the future holds. There are still alot of unanswered questions but we are waiting patiently trusting in our Lord for his perfect timing.

Have a great weekend!

Mary

Monday, April 18, 2005 3:34 PM CDT

Happy 4th Birthday my son!!!!!

Daddy, mommy and brother love you so much!!!!!!!!!!

We have had a wonderful day today. Mitchel has his usual appoinments with radiation, D clinic and speach therapy. After he woke up from sedation we came back here for a few minutes to let him open his presents then it was back to D clinic where they had a party for him. He loved it, they had cake, balloons, confetti and gave him his favorite thing soccer, football and basketballs. Miss Julie made sure his cake was perfect with balls on top. Thank you Julie, you are such a blessing to us.

Tonight Zachary will be coming over to make up for Saturday's party. He got out of the hospital this afternoon, Yeah!!!

We saw Dr. Santana today and he will not know our game plan until the MIBG and bone marrow biopsy is complete. Mitchel's ANC count came up today on it's own so we know he is producing his own white blood cells. It was 600 on Friday and today it is 1100. His platelets and hemoglobin have been great for over a month now. He will finish is accutane tomorrow morning, yeah!

The great news today is that we get to go home Friday and not have to return until Wednesday of next week for his bone marrow biopsy which is scheduled for the 28th. Please keep that date in your prayers as well as the Thursday, 21, for his MIGB scan.

I am so excited about going home, this will be my first time since October. Mike will return tomorrow and the boys and I will leave on Friday. Please pray for a safe trip as we will be traveling without daddy. We are looking forward to being able to go to church on Sunday morning. That will be such an exciting part of our trip home. Seeing all of our friends that have been so encouraging and praying for us this whole time.

Thank you all for your continued prayers we have been on such a roller coaster ride. We have consistently looked to our Lord and Saviour for guidance. He has not let us down once and we know he never will.

This week will be pretty easy, Mitchel will have radiation through Friday and then it is off to Oklahoma.

We will be home soon for a short and much needed visit!

Mary

Wednesday, April 20, 2005 8:18 PM CDT

Well Mike and I have a saying around here at St. Jude don't plan to far ahead because things could change. Well they have, Mitchel has developed mucositis (sores in his throat) from radiation treatments and we are not going to be able to come home this weekend. Mike is coming back here tomorrow.

Today has been such a busy day. I had to take Mitchel back in this afternoon to D clinic he was not able to eat or drink anything because of his soar throat. I was worried about him getting dehydrated so they put him on fluids for 24 hours and gave him a dose of morphine for the pain. He is just sleeping away on the couch so peaceful. He has a very busy day tomorrow starting at 8:00. He has an appointment with audiology to fit his hearing aides in, then radiation and he also has his MIBG scan. Friday is his last day of radiation, Yeah!!!

We have some specific prayer request tonight:

1. Pray for Mitchel's throat to be healed quickly.
2. Please pray for Mitchel's scan tomorrow to be CLEAR!!!!!!!!!!!
3. Mike to have a safe trip back to Memphis.

Thank you all for your continued encouragement. We love to hear from you all with your messages on Mitchel's website. I wanted nothing more to be able to finally go home for a while and see everyone, but we know you all understand that our first priority is here with Mitchel.

Thank you in advance for taking our prayer requests to the throne of our heavenly father.

Missing home,

Mary

Monday, April 25, 2005 5:06 PM CDT

Happy Monday,

Some of you already know we were able to come home this weekend. We are here in Bartlesville and having a wonderful time. Mike was able to attend church on Sunday, but because Mitchel has been ill will mucositis (throat sores) we have been keeping him pretty isolated. He is feeling so good today. The kids are enjoying their rooms and backyard, all of their things are right where they left them.

We will be traveling back on Wednesday. Mitchel has a bone marrow biopsy first thing on Thursday morning. We should have a report on Friday on his MIBG and biopsy. These two tests will determine his next treatment.

It has been so great being here in Bartlesville. We try and keep our minds on other things as we wait for the news on his next phase of treatment. Sometimes it is really hard to wait when it comes to something like this.

I feel bad that we are not able to see everyone on this trip but Mitchel really needs to stay in as much as possible.

Today I was able to meet my sisters in Tulsa for lunch and we had a great time. Mike is trying to get alot of work done before we have to leave. I am so amazed at his strength to be able to keep working as much as he has. Mike and I almost forgot that our wedding anniversary was today. 13 years! wow! Happy anniversay Honey!

Well we are overwhelmed with happiness just being able to be home and be a family together in Bartlesville again.

Thank you for your continued prayers, we ask that you pray for Mitchel's bone marrow biopsy that will take place on Thursday. He is not looking forward to going back to Memphis. He has already told us he is not going. I know once we start on the road he will be okay, but I certainly understand why he is feeling that way.

Love to all,

Mary

Tuesday, April 26, 2005 10:50 PM CDT

Well the party is coming to an end, we are leaving for Memphis in the morning. What a great time we have had. It was a much needed trip that could not have come a better time.

The boys have been playing round the clock. Mitchel has been feeling so great. He loves being here, he calls this his new home. He tells us every day how much he loves his new home. It is really hard to leave knowing that our journey may have to continue and we do not know when we will be back.

As we were coming home Friday night I was so overwhelmed with emotion, it just hit me out of nowhere, I had not been home for 7 long months. I came in to our home and just looked around, there was alot of medication on the kitchen window seal and notes I had written to myself from back in September when we were still trying to figure out what was wrong with Mitchel. I was brought back to that time for a moment and it was really weird thinking just how much time has gone by. Everything I have been through and everything I have learned during this difficult time. I kept asking myself just how did I survive through all of this. Phillipians 4:13 has always been one of my favorite versus, I can do all things through Christ who strengthens me. I knew that was my answer, I could never be that strong on my own.

Can I continue to be that strong for the duration of our journey, only by God's grace and his never ending love could I make it another day. Mitchel does not want to go back, he just got here, can I blame him. He just wants to be a kid. Even though we have many unanswered questions I know God is still in control and he will lead us down the path holding Mitchel's hand all the way.

As some of you know Mike works for Crown Packaging at the Tulsa branch. He has been there for 11 years and just loves his job. Last month we were informed that Crown Packaging was going to have a company wide fundraiser for us. We were blown away today when they presented the check to us. Mike and I have been truly blessed by the efforts of others and we are so humbled that people have graciously participated in the fundraiser. Thank you everyone at Crown Packaging from the bottom of our hearts we are deeply touched by your generosity. Thank you Don and Jill who took the time out of your busy schedules to fly in from St. Louis this morning. The boys enjoyed meeting you all. When Mitchel is old enough to understand Mike and I will tell him just how many people at Crown Packaging truly love him.

Well it is getting late and as much as I would love to stay up all night enjoying my home I must get some sleep.

Please continue to pray for Mitchel's complete healing.

Believing,

Mary

Friday, April 29, 2005 10:15 AM CDT

Hello everyone,

We had such a great time at home we just had to come back for a few more days. That's right we are back in Bartlesville for the weekend. We returned to Memphis Wednesday afternoon, Mitchel had his bone marrow biopsy Thursday morning and the Doctor said I will see you all on Monday. At that point we knew we would not find out anything until Monday, so we decided to come back. It is much easier to wait for the test results here than in Memphis for some reason. We will leave early Monday morning or Sunday afternoon depending on what time Mitchel's appointment is on Monday.

The trip back to Memphis was not too bad we got settled in and the kids wanted to go to the Purina dog show that was at the Target house, they had a great time. The dogs were great.

Mitchel's ANC count is a little low so we will not be getting him out this weekend, he is feeling really good though. The doctor told us to go home and have fun!

Hope everyone has a great weekend. Thank you all so much for your continued prayers.

Well the boys are wanting my full attention so I better go.

Love to all,

Mary

Tuesday, May 3, 2005 3:53 PM CDT

We are HOME!!!!!!!!

Sorry it has taken me so long to update, we have been so busy the last few days.

First of all I just want to say Praise God for his never ending love and all the times he has been there to carry us through this journey. He made sure all our needs were met and he sent angels across our path on a daily basis to keep us encouraged and hopeful.

Monday morning we got up at 5:45 am and went back to Memphis, Mitchel's appointment was at 1:15 and we checked in at 1:10. We had a great time driving back, the boys were so good. We only had to wait 5 minutes to see Dr. Santana. The bone marrow biopsy is still showing NB but it is less than 5% this time instead of 40%. Thank you Jesus! We looked at his MIBG scans one from October when were first arrived at St. Jude, one from February after transplant and the one from last week. The scans are not 100% clear but you can see that he has responded very well to his treatment from the last 7 months. The scans showed a few places that will continue to heal from the radiation. His counts continue to stay very healthy, his platelet is 205 thousand, Hemoglobin is 10.5 and his ANC goes down then up again on it's own. Dr. Santana said he looks the best he has ever seen him, Mitchel has been going non stop. He has lots of energy and feels great.

Where do we go from here? Well we are definetely going to NY for the monoclonal antibody therapy. Dr. Santana will start the process to get us accepted and find out when they have an opening for Mitchel to start. It looks like end of June of July before we go. Mitchel will continue on his dose of accutane for the next couple of months, due a round of chemo at St. Jude before going to NY. We will travel to Tulsa once a week to do blood work with his Dr. there.

All of the arrangements are being made for Mitchel's make-a-wish trip to Disney World. We will be leaving May 19, Yeah!!!! The boys are so excited!! One of Mitchel's wishes was to stay in the Animal Kingdom Hotel there in Disney World, so we have a room overlooking all the animals that roam around freely. He loves animals so much.

We have so much to be thankful for and we appreciate all of your prayers and encouraging letters. You all have been our support system and we would not have made it with out any of you.

We are completely moved out of the Target house and do not have to return to St. Jude until May 31 for Mitchel's check up.

I am so overwhelmed with emotion right now to be home and not have to leave in a few days! I think it will take a few days to sink in.

God is good, all the time,

Mary

Wednesday, May 4, 2005 11:31 PM CDT

Happy Wednesday,

Hope everyone had a great day today. The weather was so nice here. I worked inside all day trying to find a place for all of our stuff we accumulated in Memphis. My mother is coming from San Diego and I was trying to get my house put together before she comes.

Mitchel had a great day today, he amazes me how much energy he has. He loves playing with Michael, they are always laughing and running around. Tomorrow I am going to enroll them both in school for next year. Since Michael missed alot of kindergarten this year he will be tested to see if he can go on to 1st grade. Mitchel's Pre-K class is already full but hopefully then can find him a spot. He will not be a full time student since we will be traveling to NY for his treatment, but I want him to be a part of his class as much as possible. I think it will be good for him.

It is so nice to spend time with my daughter, son-in-law and grandson again. I have missed them so much over the last 7 months. Brenden will be 1 this month. I cannot believe it.

Mitchel and I will be returning to Memphis on May 30 for his appointment on May 31. We will only stay one night, we will go back each month for his check up. When he goes to NY we will not have check ups at St. Jude until after his treatment in NY.

I just want to say a special hello to everyone at Crown Packaging, you all are so awesome! We will never forget your kindness.

Still Believing,

Mary

Monday, May 9, 2005 3:46 PM CDT

Happy Monday!

Sorry it has taken me so long to update! My mother flew in from San Diego on Thursday of last week, then we drove to Dallas for my big brother's graduation from Dallas Theological Seminary. He is officially Dr. Nathan Baxter, with his Doctrine of Ministry. Way to go brother!!!!!

Sunday was my first time to go to our home church since September of last year. It was so exciting to see everyone there. Mike and I were so blessed from all the hugs and encouraging words. Thank you all so much!!

Mitchel is feeling great! We went to Tulsa for labs today and the results were perfect. His platelet count is 200 thousand, hemoglobin is 11.5 and his ANC is 1500. I can always tell when his counts are down because of the ways he acts. He has had so much energy, he is so happy to be home.

Well I want everyone to have a wonderful day!

Love to all,

Mary

Wednesday, May 11, 2005 8:22 AM CDT

I cannot believe it is Wednesday already. Where does the time go! It won't be long before we leave for Mitchel's make-a-wish trip, Yeah!!! They boys are so excited they can hardly wait.

We still have not heard anything about our next treatment in NY, but Dr. Santana said it may be a few weeks before we hear anything. We have learned to just wait in faith and know God is in total control. Please continue to pray that our insurance will cover the expenses of the treatment in NY. This procedure is very expensive and unlike St. Jude all expenses have to be covered by us, including travel to NY, meals, lodging etc.

Mitchel is feeing so good, he just loves life so much. He plays all day with Michael. The weather has been really great here so they have been able to play outside everyday. It was so cute yesterday they wanted to eat outside on their picnic table with their peanut butter and jelly sandwiches. I just love to watch them so happy.

Thank you all for your continued prayers. Being back home has been so awesome. God has given us strength and held on to us every step of the way. Prayer has been such a wonderful way Mike and I have been able to strengthen our marriage.

We hope everyone reading this has a blessed day, filled with smiles and joy!!!

Love to all,

Mary

Thursday, May 12, 2005 5:06 PM CDT

Hi everyone,

The boys have been helping me plant flowers and dig holes in the flower beds. They love to help. These days are full of wonderful memories and we make every minute count. I cannot think of a better way to spend the day than having my boys helping me in the garden.

Mitchel has been feeling so great, he is still taking his accutane twice a day for 7 more days. Then he is off for 14 days. Thank goodness he will not have to take it while we are on our trip. Today we received our make a wish packet and the boys are so thrilled to see all the pictures of where we are going and where we are staying. The hotel is called "The Animal Kingdom Resort". This is where Mitchel wanted to stay. We have what they call the Savana room, it overlooks the area where the animals roam around freely. I already know his first thing every morning will be look out at all the animals. If you ask him what is his favorite animal he says "all of them".

None of this would be possible without the Make-A-Wish foundation. Thank you all so much for your generosity and for making our little Mitchel's dream come true!

Please remember all the St. Jude families in your prayers, there was such a great support group there that helped us so much, we miss seeing all our friends from St. Jude. I have already made plans to go out for pizza with our little friend Zachary and his mom when Mitchel and I return at the end of this month. It will be a very short visit, but good to spend some time with them both.

Please keep Mitchel in your prayers, we still have not heard anything regarding the approval of our insurance company for his next treatment. I continue to pray for his complete healing from head to toe.

Loving every minute,
Mary

Friday, May 13, 2005 10:49 PM CDT

Happy Friday,

It has rained here all day. The boys had to play inside all day, but they made the best of it.

We really don't have much planned for this weekend. Just enjoying being at home with our boys. Mitchel has a few more pills left to take, he cannot wait to finish this cycle of accutane. I have tried everything to get him to just swallow his pills, but he thinks it is easier to keep them in his mouth and chew on them, then drink his milk to swallow the medicine. They are jell caps and the medicine is very oily. I guess whatever works will do.

The boys have been asking our neighbors when they are opening their pool. They cannot wait to jump in. Mitchel will have to be really careful this summer because he still has his chest tubing in. He still is afraid of getting all the way in anyway so I don't think he will mind me holding him and just splashing a little. Michael will be going off the diving board as usual.

We hope everyone has a wonderful weekend. We cannot wait to attend church again this Sunday. Pastor Rod is an amazing teacher of God's word. We love and appreciate him and his family so much.

Believing in his almighty words,

Mary

Tuesday, May 17, 2005 10:00 AM CDT

Happy Tuesday,

What a beautiful day today is. The weather here has been so wonderful. The boys have enjoyed being outside everyday.

We went for Mitchel's lab check yesterday in Tulsa and his counts are beautiful. ANC is 1620, hemoglobin is 11.3 and platelets are 190. He is feeling so great! Lots of energy I can hardly keep up.

The count down is going on here for our trip to Disney. The boys are asking every few minutes are we ready to go yet.

We received some information about the next treatment in NY this morning. Dr. Santana says to make an appoinment for NY the end of July. This would be for an evaluation and we would be there for 3 days. I assume that after those tests are confirmed we would have more definite information about starting the treatment. The Dr. in NY wants to see Mitchel after he has a second evaluation at St. Jude which will be in June sometime. Our insurance information has been submitted and now we just wait to see what will be covered for the treatment.

Thank you all so much for your continued prayers, you are true prayer warriors! I look back now on all we have been through and know all of you have played a significant role in our lifes. We cannot thank you enough for all your support. We are truly humbled and so encouraged to keep on going knowing you all will be with us everystep of the way.

Please remember our friend Zachary Russo, he is having all of his tests this week to determine what is next for him. You can check in on him at caringbridge/pa/ilovezachary.

Please keep all the families at St. Jude in your prayers, there are alot of families that are hurting right now having to see their innocent children suffer. We are kept updated through e-mails and their websites.

Please join us as we continue to ask our Heavenly Father for a complete healing of Mitchel.

Love to all,

Mary

Friday, May 27, 2005 8:46 AM CDT

Hi everyone,

Happy Friday,

We had such a great time at Disney World. The boys wore us out. They had so much energy. Their favorite place was Disney World. We went to all the other parks but they always wanted to return to DW. Mitchel to our surprise fell in love with riding roller coasters. He loved to hold his hands up as he went up for the big drop. He made sure to tell everyone to hold their hands up too. I will be adding some great pictures soon.

The hotel was awesome! The Animal Kingdom Resort was perfect for the boys. They have so many wonderful animals right outside the balconys. Just like I thought would happen the boys woke up every morning to see what was out there.

Our last day we drove to Cocoa Cocoa beach to show the boys the beach. Michael loved it until he got a mouth full of salt water. Mitchel spent over an hour just putting sand in the waves as they came up to his feet.

We are gearing up for our next visit to St. Jude which will be short and sweet. I will be taking Mitchel on Monday and returning on Tuesday afternoon. He has a check up their with Dr. Santana. We return to St. Jude on June 19 for an evaluation, which will consists of bone marrow biopsy, MRI, MIBG Scan and a few more tests. Mitchel has been feeling so good it is hard to believe he still has cancer. We are praying for perfect scans and signs of no cancer. We we return this Monday they will be giving Mitchel his second round of accutane, he will be taking 4 pills a day for 14 days. Please pray he will take his medicine without any hesitation. I am still trying to get him to swallow them. Good news! our insurance has been approved for his treatment in NY. I have been on the phone with the Dr. office in NY and we are scheduling his appointment for sometime in July. Our insurance will either pay in or out of network which will probably leave a balance at the end of his treatment, but again we are trusting totally on the lord to make sure we have all the finances we need for this treatment.

Last night we went to Walmart and I saw so many people there. It was great to see everyone and know how much they care about us. We are so thankful to have so many people in our lives that truly love and pray for us daily.

My computer has been attacked by spyware so I will be offline for several days getting my computer fixed. I will be back online on Wednesday or Thursday of next week. Sorry!

Please continue to pray for complete healing for Mitchel and for all his friends and their families at St. Jude. We are so looking forward to seeing some of them when we return on Monday.

Love to all,
Mary

Wednesday, June 1, 2005 11:26 AM CDT

Hello everyone,

This is going to short and sweet, we are getting ready to catch our shuttle back to the airport here in Memphis.

We met with Mitchel's doctor this morning and we are glad to report his counts are doing great. Hemoglobin is 11.5, Platelet count is 210,000, ANC is 1800.

Mitchel has been fighting a cold from last week and while we were here he reached a temperature of 101. They quickly started him on antibiotics for his condition. He has a cough and an ear infection. Please pray for us as we travel back home with his ears hurting. Nothing worse than an ear infection when your on the plane. His fever broke last night around 3 am so I did not get much sleep.

Mike told me that Michael has been fighting a cold at home as well. I guess we are passing is around to each other. Mike got it first in Disney World.

Well we will be traveling to NY at the end of this month for Mitchel's initial consultation. He will then return to St. Jude for a 5 day round of chemo before the actual treatment starts in NY. We should be starting to antibody therapy in NY around the end of July. We will fly in to Memphis one more time before going to NY on the 19 of this month for 3 days of testing. What a schedule!

Well hope all is well everyone, I will give more details later about NY.

Please pray for a quick recovery for Mitchel during this time he has a cold.

Love to all,

Mary

Thursday, June 2, 2005 12:39 AM CDT

Well we are back at home and so glad to be here. Mitchel did just fine traveling back home. Thank you all so much for your prayers. Both boys have a cough, they are still playing despite not feeling 100%. Mitchel will get his labs checked again on Monday in Tulsa. He is on a antibiotic so he should be feeling better anytime soon. I may have to take Michael to the doctor so he doesn't give it back to Mitchel again.

We will have a few weeks here at home before going back to St. Jude again. Mitchel still refers to our home as our new home. In his mind his home was in Memphis and now we have moved back here.

We are gearing up for the St. Jude fund raiser my parents have put together on Saturday, June 11 at their ranch in Wetumka, Ok. If anyone is interested in attending please let me know and I can give you the information. They are still looking for things to auction off at the silent auction. I have a quilt made from the St. Jude pattern that will be in the auction. It will start at 4:00 and dinner will be served. I think the tickets are $40.00 per person and $75.00 per couple. They will have live music and my husband is smoking all the meat for the event.

Yesterday in the Oklahoman newspaper there was an 1/2 page article about Mitchel and the fund raiser. They should still have copies at the stores today, if you get a chance to get one the article is really good.

Hope all is well with everyone, please keep all the families at St. Jude in your prayers. There are alot of families suffering right now that need urgent prayers. Our friend little Zach is in transplant now and we will continue to lift him up in our daily prayers. We certainly know what his family is going through right now.

Have a great day eveyone!

Mary

Saturday, June 4, 2005 10:47 AM CDT

I cannot believe it is the weekend again. Time is flying by so fast.

The boys are feeling alot better. Mitchel coughs maybe once a day now and has not complained about his ears at all. The antibiotic has made him feel so much better. He woke up this morning feeling great!

We will still be taking it easy for the next week. Mitchel has his labs checked on Monday at St. Francis in Tulsa.

I have received our airline tickets for the initial consultation with the doctor in NY so I guess it is official we are leaving June 27 and return the next evening. Mitchel will have a series of tests the week before at St. Jude so it will not be necessary to have tests again in NY. Since we are going for an overnight stay and the ticket for Mike is $427.00 we have decided that Mitchel and I will be traveling by ourselves. We have reservations at the Ronald McDonald House there which is 5 blocks from the Hospital, hopefully the weather will be nice enough to walk. I have never been to NY so this should be a exciting trip for us both. I have heard really good things about Dr. Kushner he is an expert on Neuroblastoma.

I hope everyone has a great weekend! We look forward to attending church tommorrow it has been a few weeks since we have been there. Mitchel will have to stay home with Michael, I hope someday soon they will be able to see their old friends again at church.

Thank you all so much for your continued prayers, we feel the power of prayer everyday.

Love to all,

Mary

Monday, June 6, 2005 3:23 PM CDT

Happy Monday,

If you are wondering why I always say Happy day it is because I think everyday should start with a happy thought. We always think happy thoughts to get our day started around here.

Anyway, we just returned from Tulsa and Mitchel's counts were great once again. His platelets are 264,000, Hemoglobin is 12.0, ANC is 1350. The doctor said his ears look clear and his chest sounded clear, he is feeing really good. He started his accutane again on Friday, this will be his last dose before his NY treatment. He is giving me fits about taking it this time. I really have to work with him this time. I think he is just so tired of taking medicine. Thank goodness his antibiotic has been given through his line, today is the last day for it. His Septra that he takes 3 day a week is mixed with milk and he drinks it down without knowing he is taking medicine. Septra is a pneumonia medicine, just in case he should ever develop it.

We will be leaving on Thursday to go to my parents in Wetumka, OK for the weekend. The boys are looking forward to it so much. They have missed seeing their PaPa and Gigi! I know the funraiser for St. Jude will be a great success.

I just want to thank all those who have been helping with the fundraiser, I know it has been alot of work. The lives that will benefit from all your hard work will be so blessed. St. Jude is such a wonderful place. They are truly here on earth to put the children first and help in anyway they can. They are paying for all our flights to and from Memphis and will be paying for our initial visit to NY. St. Jude feeds us when we come there and make sure we have a comfortable place to stay. It is unbelievable there.

Hope you all have a great day!!!

Love to all,

Mary

Wednesday, June 8, 2005 11:39 AM CDT

Hi everyone,

Things are really calm around here today, thank goodness. We are leaving tommorrow for Wetumka, Oklahoma, where my parents live. The St. Jude fund raiser will be Saturday, and the boys are very excited about going.

We had a wonderful day yesterday visiting with Grandma Bailey who came down and went swimming with us. We also went to the park and fed the ducks and geese. The weather was beautiful.

I was so blessed this morning to come accross a website that had this verse on it. I wanted to share it with you all. The website belongs to a young man that I have not had the priviledge of meeting yet. He is a patient at St. Jude. I am always coming across new websites from the other parents websites. It is so nice to stay in touch with all my friends I met at St. Jude. The website is caringbridge.org/la/jordanamato.

Jeremiah 29:11

For I know the plans I have for you, "Says the Lord". They are plans for good and not for disaster, to give you a future and a hope.

Proverbs 15:13

A happy heart makes the face cheerful

I spoke with Betty Jo yesterday and she and Zachary were having an okay day. I know how she feels because it wasn't too long ago we were there in the transplant unit with Mitchel. Please continue to pray for this family as they journey through one of the most difficult times of the treatment.

One of the precious girls that I checked in with everyday through her website has earned her angel wings. Monday afternoon around 4:00 she went up to be with our Jesus. I had met her parents and they are the nicest people you will ever meet. Precious Emma Grace fought so hard in ICU for over a month. Please remember her parents, Trish and Barney as they struggle during this very difficult time. Emma Grace also had neuroblastoma. Her website is caringbridge.org/ar/emmagrace.

After hearing news like this it is hard not to think about what is the future for my little Mitchel. I try to understand how some children go through things others do not. I want to see Mitchel graduate from High School, college and be married with children of his own. I pray daily for God to allow me that. I do not focus on this very much because I know he is here with me now and I enjoy every minute of everyday with him. I will not allow satan to steal my joy!

Sorry if my journal entry today is a little depressing. This is my life and I wanted to share a bit with you all.

I hope eveyone has a great day!!!

Seeking his understanding,

Mary

Tuesday, June 14, 2005 8:40 PM CDT

Hi everyone,

We just returned this afternoon from a wonderful 5 day trip to Wetumka, Oklahoma. The fund raiser was a great success. Thank you eveyone that participated, it was so organized and we appreciate all that you did.

The boys wanted to stay a few more days but I told them we have to go home sometime. It won't be long before Mitchel and I fly back to Memphis. The next two weeks will be so busy for us. We look forward to seeing all of our friends at St. Jude.

Mitchel had his labs today at St. Francis and again everything looked great. His ANC is 1650, platelets are 211,000, hemoglobin is 11.5.

He is feeling so wonderful, full of energy. Everyone at the fundraiser commented on how great he looks. They could not believe how full of life he is. His hair is coming in a little darker and heavy.

Well I am so tired tonight so I will say goodnight!

Love to all,

Mary

Friday, June 17, 2005 10:34 AM CDT

Happy Friday,

We hope everyone has a great weekend and we want to wish all you fathers out there A HAPPY FATHERS DAY!!!

Fathers are so special, they bring all of us comfort and the security that everything is going to be just fine.

We will be spending Fathers Day not doing much. Mitchel and I will be traveling Sunday afternoon to Memphis. I don't want to be nervous about this trip but for some reason I am. Mitchel will have a series of tests to see where his cancer is at this point compared to a month ago. I am asking God to equip me with the faith I need to believe his cancer has once again remained stable.

Having to worry about whether your son's cancer has remained stable or not can really wear you down. I have to give it all to my Lord and Saviour. I remember reading on another website that God did not promise a perfect life but only his perfect love. I am reaching out for that perfect love and want to wrap up in it.

Please pray for this week of tests that Mitchel will be enduring. They consists of:

Monday 6/20 - MRI of the brain and face, Bone marrow biopsy
Tuesday 6/21 - Audiology evaluation, Echo/EKG, Ct of the chest abdomen and pelvis
Wednesday 6/22 - MIBG scan (this is a full body scan to measure the amount of cancer. They will compare this to the one he had a month ago)

I believe in specific prayer that is why I gave you his schedule. During these tests I will have alot of down time, this is great for my quiet time with my heavenly father.

Mitchel and I will return late Wednesday night. I have been contacted by a lady I met in Memphis that attends the German Town Baptist Church and it was so nice of her to remind me to give her a call and wants to see us. I will be calling her and cannot wait to see her again, she was so nice and supportive for us while we were in Memphis. God has a way of sending us people that he knows will be just what we need. Thank you Jesus!

I wish all of you could go with us and just rally around Mitchel and I, we know you will be there in spirit.

Believing in faith,

Mary

Monday, June 20, 2005 12:03 AM CDT

Happy Monday,

We made it here safe and sound. The flight was short and we arrived right on time. Londa Revis and her husband Paul came to the hotel and picked Mitchel and I up for dinner. It was so nice to visit with them and get to know them better. Thank you both so much for sharing your lives with us.

Mitchel is currently getting two procedures back to back and will be sedated for both. He should be out in about 30 minutes. It feels a little strange being up here on the second floor on the computer again. I would come up here when Mitchel was inpatient and use the computers to stay in touch with eveyone.

I have an appointment with Mitchel's Doctor Wednesday to go over the tests done today. I will let you know about those results soon. Mitchel's counts are ANC 2800, Hemoglobin 11.6 and Platelet count 269,000. He is feeling so great and everyone has commented about how great he looks. He was excited this morning to be receiving the white milk, that is his sleepy milk for his tests. He loves that stuff!

Well we will be relaxing the rest of the day and get ready for a full day tommorrow. His schedule for tommorrow is:

Believe it or not that have added a few things!

10:00 Radiatin follow-up
12:30 Hearing evaluation
1:00 MIBG injection (doesn't hurt given through his line)
1:45 Panores X-ray of his mouth
2:00 EKG/Echo
3:00 CT Abdomen/chest/pelvis scan

He will not be able to eat until after his last test. Please pray for tommorrow's tests. We are still believing in a complete healing, we want the cancer to be gone and never return.

Hope everyone has a great day and week! Thank you all so much for your messages, it was so nice to read them, I needed a little encouragement and the timing could not have been more perfect. God is good, all the time!

Love to all,

Mary

Tuesday, June 21, 2005 7:25 PM CDT

Hello from Memphis,

As I look back on today's events I know the power of prayer was with us all day long.

Mitchel and I did not get to eat until after 3:30 because of the way his schedule was for testing. The last test of the day required no food on his belly so we both endured most of the day with no food. He was so good and patient, we sailed through the day. Thank you so much for all your prayers.

I will be meeting with his doctor tomorrow afternoon before leaving to catch our plane. He will give me the results of the tests done today and yesterday. I will have to wait until Friday to get tomorrow's test results.

We are just hanging out tonight at the Grizzly House hotel which is located right next to the hospital. Mitchel has been busy playing on the playground and looking at some games to play.

You all are so encouraging to us we love you so much!

Ready to be home,

Mary

Thursday, June 23, 2005 9:08 AM CDT

Great news!

Mitchel's scans are clear! He still has less than 5n his bone marrow so that has remained stable. Dr. Santana is recommending that we stay on accutane for another 3 cycles and then do the antibody therapy. We will be meeting with the Doctor in NY on Tuesday to discuss his opinion. Dr. Kushner and Dr. Santana will make the final decision so I should know something after Tuesday. Dr. Santana feels the accutane is working in keeping the remaining cancer cells stable, he wants to take full advantage of this treatment before going on to the next. If this is the case we will be traveling to NY for his treatment in about 3 months. I know Mitchel is not excited about this, he does not care to take his accutane at all.

Well I have heard of many parents having a melt down, and I think my time has come. I have always been a strong person but this traveling back and forth and waiting for results is starting to wear me down. Yesterday was the worst day my emotions came crashing down. When you return for evaluations usually they pack your schedule with one thing after the other, and on to top it all off most of the tests have to be done on a empty stomach. God kept reminding me yesterday of his many blessings and kept me focused on the good things in my life, but our minds have a way of going in another direction. I met a lady yesterday who shared her story with me, we sat for about 15 minutes and she started to weap as she shared her pain of finding out her son's brain tumor had just come back. I was waiting for Mitchel to come out of sedation and she came and sat next to me. I am so thankful I was there to listen and give her some comfort. God put so many people across my path yesterday. As I was trying to get Mitchel on the shuttle to return to the airport I met a mom and daughter from Tulsa. They helped me through the airport, carrying my luggage. I could not have made it without them. Mitchel was still somewhat sedated and it was so hard to get him through the security check point. He was not able to walk fully by himself yet and was crying. God is so good! All the time! Thank you so much Brenda and Tifanny I am so glad you were there to help me.

As I sat next to them waiting to get on the plane I met another family from Tulsa. Another mother and daughter, Ty and Halie. We exchanged phone numbers and Ty told me to call her if I needed anything in NY. She has many friends there that would help me if I get in a jam. Again God is good all the time. Hallie is a student at OSU and Mitchel really liked her. Hallie's mom, Ty, carried him on the plane and helped him to his seat. His first question to Hallie was where are you sitting, I think he was hoping she would be sitting near by. We had a great flight home, we were fortunate to be sitting right next to our new friends Brenda and her daughter Tifanny. Again thank you all so much for your help, God made sure our paths would cross.

Our minds are a beautiful thing but it can work against us also. I bought a book while I was at St. Jude called Battlefield of the mind by Joyce Meyer. What a great book it is. I know God put that book in my path to help me get through the next few days. I have been stripped down to nothing but my faith. Thank God I have my faith, it is the only thing that can help me get back on track.

Sorry I have written such a long journal for today, it helps me so much to be able to share my thoughts with you all. I will finish with a verse that helped me remember the protection we all have from God,

When you pass through the waters, I will be with you, and through the rivers, they will not overwhelm you. When you walk through the fire, you will not be burned or scorched, nor will the flame kindle upon you.

Isaiah 43:2

Leaning on him,

Mary

Friday, June 24, 2005 10:53 AM CDT

Happy Friday,

Thank you all so much for all your prayers and encouraging notes. Sorry my last entry was somewhat used as a way to vent my emotions. I have spent the last few days reminding myself my faith is growing through these difficult days.

Mike is currently away for a few days on a much needed getaway. I know this is hard on all of us and it is good to getaway and let our spirits feel renewed.

Mitchel is feeing so great, he loves being home with his brother. They are back to their old tricks. Yesterday Michael wanted to know if we could sell our dog, Sable, and get a cat. I think he got the idea from the cards the boys have been receiving from a cat named Mr. Muff. They have been receiving about 3 cards a month from a lady in Yukon that has a ministry for children. The cards are really cute and they love them. After explaining to him that we could not sell our dog, he decided it was okay to have a cat and a dog. Daddy says no way!

Tonight Mitchel will be in a Walk For Life, celebrating being a surviver of cancer. It is in Dewey at the stadium and the boys are very excited. I am so proud of Mitchel and how he has handled all he has been through. He is truly my hero!

Hope everyone has a great weekend. Again thank you all so much for your encouraging words it helped me so much get back on track and put my focus on the right place.

Feeling his mercy,

Mary

Sunday, June 26, 2005 10:56 PM CDT

Hope everyone had a great Sunday! I had a very relaxing day. The boys played non stop today. Michael is very disappointed he is not going with Mitchel and I tommorrow. I know he feels left out, I tried to explain to him as best I could reminding him that these trips were not vacations. To him they seem like vacations and he is left out. Mike will be home tomorrow and his big sister will be here to play with him so he should be fine. I told him he would be going swimming so that cheered him up.

Well tomorrow is the day to visit the BIG APPLE! I have been trying to pack for just one night but it seems I still have alot. The Ronald McDonald House there requires all bedding washed and put back on the bed so they suggested I bring my own sheets and towels. I don't have time to do laundry while I am there so I think this is the best solution.

Please pray for Mitchel and I to have a fun and safe trip. We will not have much time for sight seeing because we are only staying one night. It seems a little weird that I will be in New York city tomorrow night. I keep thinking about how we truly do not know what tomorrow will bring. This is the last situation I ever thought I would be in a year ago. I have endured the most painful and heartbreaking time in my life. Where does my journey go from here, only God knows and I am leaning on him every minute of the day.

Thank you all for your continued support through prayers and encouraging words. We are truly blessed to have so many people that care about us.

Trusting in him,

Mary

Wednesday, June 29, 2005 7:21 PM CDT

We made it back safe and sound! New York trip was so short, we really did not get to sight see much of anything. We arrived Monday night around 11:00 pm and returned yesterday around 10:30 pm. Needless to say we are tired. Mitchel had an appointment today in Tulsa so we will be resting all day tomorrow. His labs today showed his ANC 900, hemoglobin 11.5, platelet 365,000. His ANC has come down before then it has gone back up on it's own. He feels great. I must say he was the best on this trip than any other trip. We had a really good time together.

We got to meet Dr. Kushner yesterday. He is really nice and they have a great peditric unit. After meeting with the Dr. in NY Mike and I have made the decision to take Mitchel off the accutane, he has 3 cycles left, and get him ready for the antibody treatment right away. He will need 1 for sure, possibly 2 rounds of chemo before getting the antibody treatment. He will receive this chemo at St. Jude. After the 2nd round of chemo we will travel to NY when his counts recover from the chemo. We could possibly be starting the chemo the 2nd week of July. We will be talking to Dr. Santana at St. Jude about when the chemo will start.

The antibody treatment is very promising in curing neuroblastoma and we are encouraged to know he will be receiving the treatment. It is a big committment on our part. We will have to travel to NY quite often. The antibody treatment will be given Monday thru Friday for two consecutive weeks, then we will travel back home for 3 weeks, then return back to NY for another treatment. This schedule is followed for 4 cycles then after that you have a 8 week rest period instead of 3. Before going to NY for his Monday - Friday antibody treatment I will be giving him a GM-CSF injection Wednesday - Sunday. The GM-CSF is a little different from G-CSF in that the GM-CSF is a boost spefically of the White blood count, making it a better killer of Neuroblastoma. He will receive the antibody treatment until his immune system builds up a resistance to it, which we will only know when his blood is tested for HAMA, this test will be done after each antibody treatment. HAMA stands for human anti-mouse antibody. Yes the antibody comes from mice. Strange isn't it.

This is all very complex so I will try to keep all his treatment information as simple as possible.

We stayed at the Ronald McDonald house, which was only 4 blocks from the hospital. The room was very nice and the walk was pleasant. All the people were very helpful. We should have alot of time to take Mitchel around NY to sight see. The side effects with this treatment are so different than chemo. With the antibody treatment sides effects are only during the actual treatment which takes about 1 1/2 hours. There is pain involved with the treatment since the neuroblastoma is on the nerve cells, the antibody will need to penetrate those nerve cells to get into the NB. They give all the patients Dulaudid for pain and benedryl for any rash.

God is so good, all the time.

Thank you all for all your prayers. We are truly blessed to have you praying for us.

Love to all,

Mary

Friday, July 1, 2005 10:53 AM CDT

Happy Friday,

It rained here all night. We needed the rain so bad, and it seemed to cool things off a bit.

The boys are getting ready for the 4th celebration. It is their favorite time of year. Michael will light fireworks from morning to night tomorrow. We will be traveling to Neodesha, Kansas for a yearly celebration with Mike's family. Mitchel really likes the snap pops but doesn't like the firecrackers. They have been playing non stop all week. Mitchel feels so good. Michael is such an encouragement for him, they a great friends.

I spoke with Dr. Santana at St. Jude today and we made our plan to start Mitchel on chemo. He will be admitted into the hospital on July 11. Mike and I will travel down to Memphis on the Sunday the 10th. Dr. Santana said we should anticipate being there 6-7 weeks. I already had considered this because of how the chemo needs to be given. We will be able to stay at the Ronald McDonald house there. This is what we have to do in order to get Mitchel ready for the antibody treatment in NY. Mike will not be able to stay the whole time, he is so busy at work. He will be dropping in from time to time. Michael will stay here for the first week and then be coming to join his brother soon after.

Dr. Santana wants Mitchel to start his 4th dose of accutane and take it up until we arrive in memphis. With Mitchel still having the cancer cells still in his bone marrow, even as small amount as it is, neuroblastoma can spread very quickly. The accutane keeps the cancer steady.

God has been with us through this whole journey and he will continue to give us strength through the next phase of our journey. We faithfully continue to pray for Mitchel's complete healing. God has continued to answer my prayer in giving me strength, courage and most of all faith. My faith has at times been stronger than other times but I know God's mercy and his love continues to pour out over us even in our weakest moments. No matter how many treatments and doctors we seek out, we know God is solely the one that is in control. We are so grateful for all the doctors and the staff that have taken such great care of Mitchel. They are all a true blessing from God.

Hope everyone has a great 4th celebration. Please continue to lift Mitchel up in your daily prayers.

Gathering strength,

Mary

Tuesday, July 5, 2005 4:31 PM CDT

Happy Tuesday,

We have had a very busy week so far. We are getting ready for our journey back to Memphis. The reality of it is starting to sink in. Our lives were just beginning to get back to normal. We are so thankful for our time we have had here at home as a family. I know it will be that way again soon.

We have to keep looking up and know our every need will be taken care of. We continue to trust in our faith and know that God, if necessary, will carry us back to St. Jude. St. Jude is such a wonderful place, I am so glad to have Mitchel taken care of there.

Thank you all for your continued prayers. We are truly blessed to have so many of you care so much for our family. There is another family that I want to request a special prayer for today. It is our little friend Zachary, I have mentioned him before in my journal entries. He has had a complication with his transplant and his liver is not functioning properly. They have put him in intensive care so they can administer all the medications he needs right now. The doctors are very encouraging and know exactly how to treat his condition. Please pray for complete healing of his liver and please pray for his parents, Betty Jo and Dave. They need all the encouragement right now. Zachary's website is caringbridge/pa/ilovezachary.

I hope everyone has a great day today. The weather is so beautiful today.

Love to all,

Mary

Wednesday, July 6, 2005 10:43 PM CDT

Hi everyone,

Hope you all had a wonderful day. The boys and I went to Tulsa today to have Mitchel's labs done. The results are beautiful, as his nurse puts it. ANC is 1250, hemo 12.5, platelets 265,000. His triglycerides were down again also.

He feels so great, he just loves his life so much. We still have not told him that we are leaving on Sunday. I don't want to ruin his fun. We bought the boys a trampoline over the weekend and they love it. We had a great family time last night, all of us went out and laid on the trampoline and counted the stars. The boys loved it. They each picked one and made a wish. Mitchel got scared at first because he thought we were saying witch instead of wish. After explaining it to him he got excited about making a wish. I love to watch the boys play together. They are such great friends.

Mitchel is taking his pills so well, I think he knows there is no getting out of it so he just takes them.

Please continue to pray for a complete healing for Mitchel. As the days get closer to heading back to Memphis, the more I feel overwhelmed with saddness. I know it is the best place for Mitchel but who wants to go through the whole chemo again. I know Mitchel is the one who goes through the worst of it, but I cannot help but feel some saddness about leaving. Thank you so much for all your encouraging words. We have been so fortunate to have people like you to help us get through this nightmare.

I do feel peace about going and know we have made the right decision. Mike and I stand together as we move forward in our journey. We love our children so much and would do anything for them.

Keeping my chin up,

Mary

Monday, July 11, 2005 4:44 PM CDT

Happy Monday,

Well we are here in Memphis. It has been raining all day. We are checked in and Mitchel will start his chemo tonight. He will be receiving Cyclophosphamide for two days, vincristine for one day and Irinotecan for 5 days. He has never had Irinotecan before but the side effects are pretty mild. We met with Dr. Santana this morning and he said Mitchel looked great. His counts are up and we are not sure if he will be receiving one or two rounds of chemo. Dr. Santana will evaluate Mitchel after the 1st round of chemo and make a decision based on how well his counts come back on whether to go ahead with a second round of chemo. The second round will be much harder on his bone marrow so we will not know for a few weeks.

Mitchel is snuggled in with a warm blanket and has ordered a steak for dinner. He had a steak last night but we are glad to give him whatever he wants because we know when the chemo kicks in he probably won't be eating much of anything.

Michael is doing well he is anxious to be with us, Mike will bring him back on Saturday when he returns. Mike will have to be traveling alot more, he is so busy at work and cannot stay for long periods of time. He will be leaving on Wednesday. We will be moving into the RMH tomorrow. I think the time here will go by fast. I am believing that anyway.

Mike and I surrender to our Heavenly Father and we know he is never going to leave us. We are able to find peace and wisdom in faith. Please continue to pray for a complete healing of Mitchel's body from cancer. We believe God has a great life planned for our little guy.

Also, please pray for Mike to have safe traveling and the strength to be able to work and continue to be strong for us all. He has been my rock through this whole journey. I.L.Y!

Thank you all so much for all your love and encouraging words. We have had some really low points over the past 8 months and we continue to be amazed by your support.

Also please remember our little friend Zachary, he is going through so much right now. You can encourage his family at his website caringbridge/pa/ilovezachary.

Surrendering to him,

Mary

Tuesday, July 12, 2005 10:29 AM CDT

Day 1 for chemo!

Mitchel started his chemo last night about 12:00. He needed to be hydrated quite a bit to get him ready for chemo. We have noticed he has developed a little mucositis already. I hope that is not an indication of him getting a worse case of it. He woke up at 10:00 and is playing his game cube. His first question this morning was how many sleeps until Michael gets here. The boys counts their sleeps to figure out how long it will take to happen. I told Mitchel it would be only 4 more sleeps for his brother to get here. He said Yea!!!!

Mike is over getting us checked into the RMH, we will be there the duration of our stay here. Mike will be leaving tomorrow.

Mitchel spent last night playing soccer in the halls, he found several volunteers ready for the challenge. They all said he is really good.

Hope you all have a great day! We appreciate all your prayers. The kind folks from German Town Baptist Church have already contacted us and wanted to know what hospital room we will be in this week. They are amazing people and we are truly thankful to have them extending out their warm hearts to us.

Truly thankful,

Mary

Wednesday, July 13, 2005 12:24 AM CDT

Day 2,

Oh what a night!

Mitchel got started on his chemo last night around 11:30 and they had to test his urine every hour starting at 1:45 am and ending at 9:00 am. It is hard to sleep when you have to get up every hour. But we managed and God has seen us through yet another difficult time. We are up and planning on having a great day! Mitchel feels pretty good, he is eating lunch and playing his game cube. His lunch request for today was muenster cheese with mayonaise and cheetos. He also had a slice of turkey. He showed me exactly how he wanted his mayo to be put on his cheese, no bread. He has been talking to all the nurses and really expressing himself more than usual. Mitchel can be really shy, but he is coming out of his shell more and more. He did not complain once last night, even our last time to the bathroom I thanked him for being so good and he responded in his little voice, your welcome! He puts a smile on my face all the time!

He played soccer yesterday and spend alot of time in his room. We are going to attempt to get out and play a round of soccer later. He told the nurse that his stomach was a little upset so they gave him some benadryl, that always sseems to work.

Thank you all for your continued prayers and such encouraging messages, it keeps us all moving forward. We miss daddy already and can not wait for him to get back with Michael. Michael is going to the water park today with his cousins and grandma. I know he is exited about that.

Please continue to pray for all the families here at St. Jude. Little Zachary is remaining stable and gradually getting better day by day. It is a very slow healing process from VOD. I have been in contact with his mom, Betty Jo, and she has so much strength during this difficult time. Thank you for your friendship!

Also please remember a hero of mine, Princess Ashley, she is a young lady that we met here some time ago. I have kept up with them on their website, she will be having her leg amputated on Monday. I get so much encouragement and strength from their website. They truly remain faithful to their God and lean on him continously. Her website is caringbridge/la/princessashley.

Remaining in his arms,

Mary and Mitchel

Thursday, July 14, 2005 10:49 AM CDT

Day 3

We are half way there! Yeah! Mitchel is doing great. He is so brave and just goes right along with it all. He never complains. He is still eating and getting up to play. I had to encourage him back to his room last night around 9:00, he was playing with a friend in the playroom. I think he has his days and nights mixed up because he is still alseep.

He has figured out the nurse button and pressed it twice yesterday. When they said can I help you he first requested something for his stomach, he said, "my stomach is a little upset", with his sweet little voice. Then he called them back and requested a warm blanket, his favorite thing in the hospital. The nurses here are so awesome they really take good care of all their patients. Mitchel feels very safe and comfortable here.

He is counting the days when daddy returns with brother. It won't be long I keep telling him. The doctors told us this morning we should get out Saturday. We will be so ready.

I keep my mind on the Lord and he takes me through the day. Mitchel and I have made the best of our time this week. We are entertaining each other, he keeps me smiling.

Hope everyone has a great day and please know we appreciate you all so much. We have been able to visit several of our friends here and it is so good to see them again. Please continue to lift all the families up in your prayers here at St. Jude.

Continuing to smile,

Mary

Friday, July 15, 2005 11:54 AM CDT

Update 3:45 pm

Mitchel is being released this afternoon. This is great news! He will get his last dose of chemo in the morning in the medicine room.

Day 4
Yet another long night!

I think we finally went to sleep around 4:00 am this morning. Mitchel is not feeling well at all and his throat is hurting more. We finally decided to give him morphine to help with his pain and help him sleep. He cried for daddy every time we woke up. His is feeling pretty miserable now. The doctor suggested we may get out today depending on how Mitchel is feeling later. That would be fine with me. He will get his last chemo in the medicine room in the morning.

There was alot of noise around 1:30 with the baby next door, they needed some ex-rays in the middle of the night. Doctors and nurses were right outside our door, I was told the baby is fine, 10 months old. I have not met the parents yet, you would think being right next door you would get a chance to visit but you don't. This is a double full time job. My friend Betty Jo told me a little baby arrived yesterday to the ICU floor, he is just hours old. His mother was still in the hospital recuperating from the delivery. I cannot imagine your baby being taken away to another hospital just after giving birth. I am counting my blessings everyday.

Please pray that Mitchel will begin to feel better and his mouth will have a complete healing. He is not eating much and it hurts to drink.

I will keep you posted at we know when we will be released from the hospital.

Feeling very tired,

Mary

Sunday, July 17, 2005 1:53 PM CDT

Day 5, last day of chemo,

We are out of the hospital as of Friday night! Yeah!

Mitchel finished up his chemo yesterday, Saturday, in the morning. His counts will be going down and probably not be feeling very good for the next week or so. He has needed morphine pretty often to keep him comfortable with his soar mouth. He feels tired and just plain old yukky!

Mike made it in with Michael last night, boy were we glad to see them. We went to the zoo today and Mitchel is now sleeping. He received his port in the arm this morning, the one they put in yesterday fell out so they had to do it again. He will receive GCSF injections through this port daily for 7 days. It is a boost for his while blood count. Seeing Mitchel like this breaks our hearts, Mike and I both cried this morning as Mitchel yelled saying please mommy no ouies, it hurts. We are reliving the nightmare all over again.

We know all this is for a reason and he needs this chemo before receiving the treatment in NY. We just have to stay strong and believe in the hope that we have.

Mike will return on Wednesday to work and I will be here with both boys for a while. I love having them both together even it is more stressful at times. Mike's mom will be here some in August to help with the boys.

On a good note, both boys are enrolled in school. They will attend Ranch Heights elementary in Bartlesville. Micheal will be in 1st grade and Mitchel in Pre-K. I am so excited for them both, Mitchel will be excited to start. The school already knows that Mitchel will be a part time student, I know he will still benefit from going even if it is only part time. I want him to experience pre-k, Michael loved going and I remember Mitchel always going with me to take him, he always wanted to stay and play. I told him everyday, just wait Mitchel one day you will be going to school here too.

The weather was perfect for the zoo, there was a cool breeze and it was just what we needed today. Thank you Jesus for such a beautiful day today.

Please continue to pray for Mitchel's complete healing, we believe in the awesome power of prayer.

Enjoying my family,

Mary

Monday, July 18, 2005 12:40 AM CDT

Quick update:

Mitchel was readmitted into the hospital this morning. He has a fever of 102.8 and is feel really bad. The chemo he received last week will cause all of the symptons he has. We will have to wait it out and let his body heal from the chemo. His ANC count is at 0. Mike and I are trying to decide whether to take Michael back with him or leave him here with me. It is so hard to keep both boys when Mitchel is in the hospital. Mike's mom has offered to come down, so we will just have to wait and see what tonight and tomorrow will bring. Dealing with cancer is a day by day experience. I will update later today.

Please pray for a speedy recovery, Mary

Tuesday, July 19, 2005 10:07 AM CDT

2:00 update

Doctors just came in and told us that Mitchel tested positive with C-Diff. This is a fungal infection tested with a stool sample. It is contagious so our room has been marked for isolation. Anyone entering has to be protected with yellow gowns and masks. He will start on a antibiotic for this immediately. He will need to test negative two days in a row before they consider him over this infection. The antibiotic is taken orally so please pray that Mitchel will be willing to take it. Most of you know he does not take any medication orally. We will keep you posted as soon as we know more.

Hello everyone,

Well we are all up and Mitchel seems to be feeling better today. He is talking again and that is a good sign. He is playing the game cube with Michael. I know that makes us all happy to see him feel like playing again. Mitchel's has not had a fever all morning, hopefully this will put him on the road to a speedy recovery.

We appreciate all your prayers. Some days we are carried all day long in the precious arms of our Lord. A very special prayer warrior left this scripture on Mitchel's website and I wanted to share it with you. Thank you Melanie, we love you!

Psalm 4:8 - I can lie down and sleep soundly because you, LORD, will keep me safe.

We will update later this afternoon after we see the doctor.

Feeling rested,

Mary

Wednesday, July 20, 2005 11:47 AM CDT

Happy Wednesday,

Mitchel is feeling much better today even though he still is running a fever and still has c-diff infection. His spirits are running high, playing with Michael and hiding under the covers when his doctor came in. He took a bath this morning and amazingly enough let me do his mouth care. So I know he is feeling better to let me do that. He took his tylenol mixed in apple juice, we just have one more medication to try and get down him today. It is Flagile for his c-diff it is not effective unless taken orally. We tried yesterday and he refused to take it. So mom will try mixing it in hersheys syrup, that usually works.

Mike left last night and got about 250 miles away before getting a hotel. He needed to get back to work today. I am so proud of him, he has been such an encouragement to me. It was not easy for either of us to return to Memphis and put our son through chemo again. Please pray that he will have a safe trip back tomorrow.

Michael and I are holding the fort down here in the hospital. Michael slept in the parent room that is directly next door to the room Mitchel is in. We put him on the blow up bed. He has been so good all week, he is growing up to be such a kind and thoughtful young man. He cares so much about his brother and does not want to leave his side. I slept pretty good last night, considering we have to sleep on a couch on Mitchel's room.

They are starting Mitchel on TPN tonight, which will be given through his line to help him get nutrition. He has not eaten since Thursday, hopefully he will begin to eat on his own soon. He has been on TPN before and did just fine.

We just gave Mitchel Flagile mixed in hershey's syrup, it took two of us but we got er done!

Thank you all for your continued prayers and encouraging words. We enjoy reading all the messages on the website. Mitchel loves to see how many hugs he has.

Keeping it all together,

Mary

Thursday, July 21, 2005 2:54 PM CDT

Happy Thursday,

Mitchel is having his best day yet. He is still in isolation, but he did test negative yesterday for c-diff. It takes two negative test results in a row before you can be taken out of isolation. He has still been running a fever off and on so it like we will be here for a few more days anyway.

Mike returned last night and he was here this morning to relieve me. I got a short break back to the RMH for a shower and a few minutes to think for myself about how tired I was. I felt so overwhelmed with feeling mentally tired. I guess that should be expected since I have been inpatient with both boys the last few days. Mike will stay here tonight and give me a much needed break to get a good nights sleep.

Thank you all for your encouraging words, this means so much to us all as we journey through this. We have been so blessed with such a surrounding of people who truly care for us.

We love you all,

Mike, Mary and boys

Friday, July 22, 2005 11:40 AM CDT

Update 3:30

Negative! Negative! We are Negative for c-diff. Praise the Lord! He is out of isolation! Yipee! He can now leave his room and have some fun time in the playroom and kick the soccer ball down the halls.

The picture of Mitchel on his website is from yesterday. He was playing Bob the Builder with his hat on. As you can see he is feeling better.

Happy Friday!

We are still inpatient. Waiting on the c-diff results from yesterday, praying they will be negative. He will be out of isolation if we get a negative report. Yeah!!!

Michael and I got a good night sleep at the RMH last night. It was so nice to be able to relax for a few hours before going to bed. I don't think I really did anything significant, just enjoyed relaxing. Michael and I played on the playground for a while at the RMH. He found some girls that were up for a little game of tag. I just watched them remembering when I was a kid that was my favorite game. Tag your it!

I woke this morning and enjoyed some much needed time with the Lord. I have not been having my quiet time lately. I have been dealing with alot of emotions lately. There have been several children that have earned their angel wings that have the same cancer as Mitchel over the last few months. This has been hard for me to understand. Why do these innocent children have to suffer so much. I do not want Mitchel to be sick anymore, I just want him to be well again. Be running around playing with his brother.

A little voice in me keeps saying just remember my words, I will not leave or forsake you. Some days I have such a small amount of faith, but when I think about how small a mustard seed is I know that God understands and he accepts with open arms my faith even if it is such a small amount. Some of you might think I am whining but I truly am sharing from my heart. This is how I make it through my day. Thank you for listening and caring about us so much!

I will update again when we get the results back for the c-diff culture.

I found this poem on another family's website and wanted to share it with all you dads out there. Dad this one is for you!

DAD, I LOVE YOU

Walk a little slower, Daddy,
Said a little child so small.
I'm following in your footsteps
And I don't want to fall.
Sometimes your steps are very fast,
Sometimes they are hard to see;
So, walk a little slower, Daddy,
For you are leading me.
Someday when I'm all grown up,
You're what I want to be;
Then I will have a little child
Who'll want to follow me.
And I would want to lead just right,
And know that I was true;
So walk a little slower, Daddy,
For I must follow you.

Did I ever say thanks
for all the toys you mended,
games we played,outings to the park,
and the way you always tried to cheer
me when I was down?
Did I ever say thanks for
the sacrifices you made
so I could be involved
in so many enriching activities?

Did I ever say thanks for
working so hard to provide for our family?
Did I ever say thanks
for having such faith in me
and always being there when I needed you?
Most of all,
Did I ever say thanks for caring?

DAD, I LOVE YOU

Thinking of Dad,

Mary

Saturday, July 23, 2005 11:26 AM CDT

Well we are out of isolation! Mitchel did not waste anytime busting out to the halls. He was on a mision to find a soccer ball and a tricycle. Miss Amy found the soccer ball and we were off to play soccer in the hall.

Mitchel's ANC came up to 100, this is not high enough to get out but we are on the right track. If is rises to 200 or more we will be released tomorrow. We are believing that tomorrow is the big day.

Mike will be leaving tomorrow and his mother is coming to stay with us. It will so good to see her and the boys are very excited to see Grandma. Mitchel will be very limited on what he can do because his counts will still be recovering and he will have to wear his little mask.

We apreciate all your love and prayers.

Love to all,

Mary

Sunday, July 24, 2005 3:07 PM CDT

His SON is shining today,

We are getting out of the hospital this evening! Praise God!!!!

His ANC came up to 300 today, he is a little pale and I suspected his hemoglobin was low. I was right it is 8 right now and he will need a transfusion which takes about 3 hours so we should be out by 7:00.

Mitchel is feeling better everyday. He is regaining strength and is on the road to recovery. The side effects of chemo come in many forms. One is hair loss so his beautiful blonde hair that just came back is starting to come out. If it does not all come out this round I am sure it will with the next round. Mike has already made sure his hair was cut really short so Mitchel will think he just looks like daddy, which is just fine with him.

Mike's mom is coming in about an hour and will stay until Wednesday when Mike will return. Thank goodness for my mother-in-law she has been such a blessing during this journey.

Thank you all for your encouraging words, we are so lifted up by them.

Feeling his SONshine!

Mary

Tuesday, July 26, 2005 11:50 AM CDT

Update: 4:00 pm

We met with the physical therapist and she thought Mitchel's muscles were tight in his ankles. He does not want to walk on his heals at all and so we will be working with him, reminding him to stay off his tip toes. Next week when he is receiving his chemo they will work with him and make sure he is up and moving around. He is feeling alot better, which makes me feel a whole lot better as well. I worry about every little thing that is not right, I am sure that is me just being a mom. Please continue to pray as Mitchel's body tries to recuperate before receiving another round of chemo.
My mother-in-law and I lucked out this week, dinner is being provided every night this week, yipee no cooking!!!

Happy Tuesday,

We finally have a morning off and it feels great! Mitchel is feeling okay today. We had our appointment with Dr. Santana yesterday and he has Mitchel scheduled for a second round of chemo starting Monday, Aug 1. Mitchel will have his labs checked again on Thursday and if his platelets look good we will start chemo, if his platelets drop and he needs a transfusion he will not be ready to start chemo on Monday. He will have to wait for a week and check his labs again.

Today we are taking Mitchel in for physical therapy. we noticed last night that he was not walking on his heal to toe but only on his toes. They will evaluate him to see what is causing him to do this. He did lay in bed for about two weeks without walking alot so maybe his ankles are little tight. I will let you know when we get back from his appointment.

Things are moving along so fast right now, it won't be long and we will be in NY. Mitchel is going through the side effects of chemo and his hair is almost gone. He does not look like he feels that great. We have seen this before, but it is hard to go through it all over again.

We continue to trust in our God and know he will lead us through any situation.

Thank you for all your continued prayers!

Love to all,

Mary

Wednesday, July 27, 2005 1:40 PM CDT

Greetings from Memphis,

The picture that is on the website today is from yesterday. As you can see Mitchel is all smiles. He played all day yesterday with Michael. The RMH had activities here all day long. The boys love it here. We will be coming home tomorrow for a much needed break. Mitchel will need to be back on Sunday to start chemo on Monday so it will be a short break. We are excited anyway!!!

Mike will be keeping Michael and join us next week on Wednesday. Mitchel and I will be traveling alone on Sunday back to Memphis.

We do not have any appointments today so we are just relaxing and enjoying our time together. It seems like this week is just flying by. My friend Betty Jo came over last night and joined us for dinner. It was good to talk with her. Zachary, her son, is still in the hospital. Please remember their family in your prayers, I know it has been really tough being in the hospital for two months. We think they will be getting out soon. Yeah!

Tomorrow Mitchel will have physical therapy first thing in the morning then we will have his labs checked before our appointment in the clinic. We will be leaving Memphis around lunch time. We cannot wait for our van to be heading west on HWY 40!!!!

We hope you all have a great week!

Anxious to be home!

Mary and the boys

Thursday, July 28, 2005 2:36 PM CDT

Hi everyone,

Well we just thought we were going home. Mitchel's platelets are dropping and he may need a transfusion. They will recheck his labs in the morning. His platelets need to come up on their own before he can start chemo on Monday. If he receives a transfusion then his chemo will be delayed for a few days. With all this going on I thought it was best to stay close to St. Jude until we know something more definite. When your platelets drop you can have nose bleeds and the smallest scratch can produce alot of blood and you can get alot of bruising.

Anyway I called Mike and he is headed East on HWY 40. We will still be together as a family it will just be here instead of home. To be honest I would not care if we had to go to the the moon as long as we could be together. I was disappointed for a second, then I reminded myself how God is in control and not me. We will definately make lemonade out of these lemons!!!!

Mike will stay for a few days and return home on Tuesday.

We have met so many nice families here at the Ronald McDonald House. They have been having Camp Wishing Well all week, with activities for the kids and meals everynight. We finally got a break from the heat last night and the boys played outside for about two hours. Mitchel was running around the whole time. He is feeling really good. He has been sleeping all night and has not taken a nap all week. He has alot of energy.

God has been teaching me so many things through our journey and I count on his mercy daily. Obstacles are always there but we learn how to keep looking up and remember his promise to us. He will love us and never forsake us.

God is good, all the time!

Mary and the boys

Friday, July 29, 2005 10:40 PM CDT

WE ARE HOME!!!!

How wonderful it is to be home sweet home! Mitchel's platelets came up to 29,000 so he did not need a transfusion but his chemo has been delayed for a few days. Yesterday his platelet count was 28,000, so they are headed in the right direction just going a little slow. His count needs to be 75,000 before he can start his 2nd round of chemo.

We will have them rechecked at our local hospital on Monday and Dr. Santana will make a decision about chemo. So we will enjoy the time we have at home for now.

Mitchel is still feeling great, he has lost all of his hair now. He looks in the mirror and says look mom my hair is gone. Where did it go? He thinks it is funny. I hate the thought of letting him build up his system again to only give him another round of chemo. This round will be the strongest of the two. The doctors say this is what he needs to prepare him for the antibody therapy in New York. We have heard so many great things about this antibody therapy and we are hopeful that this will be the last treatment he will need forever.

We will continue to trust in God and let him lead us through this trying time.

Mitchel is enrolled in Pre-K and his parent/teacher conference is scheduled for Monday. How sweet that it was scheduled at the same time we are going to be home. I cannot wait to take him. Both boys are excited to start school.

Enjoying my home,

Mary

Monday, August 1, 2005 10:38 PM CDT

Happy Monday,

It is hard to believe that Monday is almost over. We have been so busy since we arrived back home. We spent most of the day in Tulsa today. Mitchel had his labs checked this morning and his platelet count is up to 66,000. All his other counts look great too! He will have them checked again on Wednesday and we will head back to Memphis on Thursday for his to start chemo on Friday.

We are not looking forward to leaving our home again, but we know that we will not be there for long. If this round goes like the first round we will be there for about 3 weeks. Then it will be off to NY.

Tomorrow Mitchel and I are going to meet his pre-k teacher and he is not sure about it. Sometimes he says "No, I am not going" then sometimes he talks about his teacher's name and his school supplies. I think he is just a little nervous. Michael will be starting school on Aug 17 and he will get a chance to meet his teacher the night before. Mike and I are not sure who will be taking Michael to school at first but we will work through that when the time comes, which will be soon. We know for sure that one of us will be here to get him started in school. This will be a very important year for him. Mitchel will go to his class when he can. His teacher already knows he will mostly be a part time student, but we all agree that a little exposure to school is better that nothing.

Mike and I are so amazed at all the support that we still receive from everyone through prayers and such encouraging words on the website. Today when we returned home there was two balloons tied to our mailbox with a big banner rolled up that said Jesus loves you. It was signed by alot of people from our church. Thank you all so much, God has blessed with so many great friends.

We miss attending church so much. I know that someday real soon we will be able to get back to going on a regular basis. We miss hearing Pastor Rod's words that he so graciously shares with everyone. Words that truly come from his heart. We miss the praise and worship time, our friend Kris does such a wonderful job with the music. I am still listening to the CD's you sent us, Thank you! As we roll down to Memphis we listen to them and think about being in church again.

Mike and I are holding on to our faith like never before. We trust in our God to deliver us from these difficult times. Please continue to pray for a complete healing of Mitchel. He is our hero!!!

Enjoying being home!

Mary

Wednesday, August 3, 2005 2:38 PM CDT

Hello everyone,

Well it is official we are heading back to Memphis in the morning to start chemo on Friday. Mitchel will be admitted and we will be there for about 3 weeks.

Mitchel's platelets were 98,000 this morning but his ANC has dropped to 600. He must be fighting off something. The doctors are certain his ANC will go up and he will be ready for chemo on Friday. Thank goodness this will be his last round. It seems like getting to NY is taking forever. I ask God for patients everyday.

We have enjoyed our home so much these last few days. It has been so relaxing and the boys have been all smiles. It is such good medicine for Mitchel to be home. We cannot wait for the weather to cool off so we can spend more time outside. It is so HOT!

Please continue to pray for Mitchel's comptete healing. Also pray for our safe trip tomorrow. Mitchel's friend Zachary needs alot of prayers right now, he is still recovering from his transplant.

We hope everyone has a great day!

Love to all,

Mary

Friday, August 5, 2005 11:10 AM CDT

Happy Friday,

We just returned from D clinic and Mitchel will NOT be starting his 2nd round of chemo today. His ANC has dropped to 200 and it needs to be at least 500. We will have his counts rechecked again on Monday and hopefully he will be ready then.

Despite Mitchel's counts being low he is still his active self. He is running around playing with his brother. I forgot to mention on my last journal entry how it went when we visited Mitchel's school and met his teacher. He kept telling me he was not going, but once we got there he loved it. He went over to a desk with his teacher and she asked him alot of questions. He new all his numbers, colors, shapes and his letters. She was surprised he even knew when his birthday is. I think they will get along just great.

We really do not have anything planned for this weekend. Just being a family and enjoying each other.

Please continue to pray for all the families here at St. Jude, one in particular is Zachary Russo and his parents Betty Jo and Dave. I have mentioned him alot in my journal entries. He is still recovering from his transplant, pray that his liver will heal quickly. caringbridge.org/pa/ilovezachary.

We pray that everyone has a great weekend!

Enjoying my family,

Mary

Monday, August 8, 2005 2:35 PM CDT

Happy Monday,

Mitchel's ANC is only 400 today so we are NOT starting chemo today. We will have them rechecked tomorrow and hopefully we will start chemo then. As much as I hate to start chemo I know this is what he needs for his treatment in NY. I have said this over and over again but it is on my mind alot. We are trying to make the best of our time here, it can get a little boring at times. We know that his counts could have been checked at home before coming here, and we could have had a few more days at home, but now we cannot leave because we know it will be any day now. I am determined to keep my spirits up and I frequently remind myself that God is here with us. That is all we need.

The boys are happy playing no matter where they are. The RMH is a fun place for them, and the Target house is having a camp all week with lots of fun games. They are also serving dinner every night this week. The siblings of all patients are being honored on Thursday. Michael will receive a trophy for being such an inspiration to his brother. I will take lots of pictures to share with you all.

We had a little scare with Michael, he has had some blood in his urine the last couple of days and we had to take him in the the urgent care on Friday night. His UA came back clear, but he still complains of burning when he goes to the bathroom. We will be taking him to his pediatrition next week to run another UA. He will be starting school on Wednesday, Aug. 17. I know that we will have to be separated when he starts school. I am not looking forward to that, I love being around my kids everyday. I will have a huge void in my heart when he is not here. Mike will be taking him back to start school on Sunday.

I have been praying alot for several situations in my life. This journey has taken a toll on us all and we sometimes feel just plain ole worn out. I am constantly praying for strength and encouragement. God has always come through with an abundance of both.

We will keep you informed about tomorrow's counts. Please continue to pray and thank God for Mitchel's complete healing. He will be healed!

Love to all,

Mary

Tuesday, August 9, 2005 2:05 PM CDT

Nothing like waiting by the phone!

Mitchel's ANC count is down to 300 today. Yesterday it was 400. Dr. Santana is concerned about his counts lingering around the 400 range, so how long do we wait. That is the big question. Mike and I are having doubts about this second round. If it is taking him so long to recuperate from the 1st round what is the 2nd round going to do. He will be more succesptible to infections and could become very sick which would eliminate him from the antibody therapy we are trying to get to. Dr. Santana is waiting for a response from the Doctor on NY as to whether Mitchel can start his antibody therapy now.

We will let you know when we find out. Please pray for Mike and I to have peace about the decision. This is very difficult when you have so many issues to consider.

Praying for wisdom!

Mary

Wednesday, August 10, 2005 3:54 PM CDT

I am so glad that yesterday is over with. We spoke to Dr. Santana late in the afternoon and he and Dr. Kushner from NY have decided Mitchel needs to go ahead and start chemo now. Today Mitchel's ANC is only 400 and our biggest concern is giving him chemo with his counts being so low. Mitchel's bone marrow is working because his platelets are in the 200,000 range and his hemoglobin is holding at 9.9. With his ANC being so low he will have to be extra careful about being around alot of people and he will have to wear his mask everywhere.

They will be watching him very closely this week as he starts his chemo. He will be starting this afternoon. As we see it we do not have any choice but to move forward with chemo. Dr. Kushner in NY will not accept Mitchel right now for the antibody treatment without the 2nd round of chemo. We are trusting in what the Doctors are telling us and we know that the treatment in NY is what our goal has been for several months.

Please pray that Mitchel will be protected from the many side effects that come from this round of chemo. His body has been through so much. He is running around today and laughing full of energy. I know that it won't be long before that will stop and he will only want to lay in bed and be asking for medication to make him feel better. I have to admit that I am afraid and I cannot wait for these next 5 days to be over with. My little baby having to suffer so much. It is not FAIR!

I know that our hearts will be restored as we come before our Jesus.

Needing strength!

Mary

Thursday, August 11, 2005 9:55 AM CDT

Well to day is the big day for Michael. It is siblings day at St. Jude and they are having activities all day for him. They start off with a group activity for just the siblings and then the families can join them for a party. At 1:00 they are having a ceremony to honor the siblings. They will each receive a trophy. When I got out of the shower this morning Michael was already dressed and ready to go the only problem was that he put on the clothes from yesterday, so after a quick change he was ready.

They started his chemo yesterday around 4:00, I could not hold back the tears as I saw the chemo making it's way to my son little body. I have had a knot in my stomach ever since. I am so worried about him being able to handle this 2nd round. The emotions that you feel during a time like this can be so strong. I have one son at a party having a great time and another son lying in bed feeling sick. He is scheduled for a EKG this afternoon just to make sure everything is going as it should.

It is almost 11:00 and Mitchel is still sleeping. The chemo makes them very tired. One day down and 4 more to go. I sometimes feel our lives are moving in slow motion, I want this to be over quickly.

Thank you all so much for all your kind and encouraging words. I am humbled that you take the time out of your day to remember my family and lift us up in your daily prayers. We feel the power of all your prayers!

Mitchel is up now so I better go!

Still looking up,

Mary

Friday, August 12, 2005 2:43 PM CDT

Hi everyone,

Mitchel is feeling pretty good today. He has been running a fever since last night which is probably from the chemo. They still had to draw blood from his lines and his little arm this morning just to be sure. I hate holding him down and hear him scream for help. After it was all over he crawled into my lap and fell asleep. He had a visitor named Hailey from South Carolina, who is here visiting with her youth group. He perked up and was so glad to see her. He immediately invited her to a challenge with Mario Kart. It was great to see him laugh and smile. Thank you Hailey!!!

The nurses were in most of the night taking blood pressures and checking his temperature. They scheduled his EKG at 7:15 this morning. He was wide awake after the nurse left so we were up early this morning. I was so glad to see Mike, I needed to get some sleep.

We found out this morning this cycle of chemo is only for 4 days instead of 5. Praise the Lord! So far he is handling it pretty good. We just got back from the play room and he lasted about 1 hour. He is back in his bed playing his new Madagascar game. He loves the Madagascar characters, he does not have movie yet, we were not sure if he would like it, but I think he would love it. His grandma and grandpa Bailey bought him and Michael the Madagascar game for his gamecube. Thank you both so much, he still loves it!

Mike and Michael will be leaving tomorrow evening, I am glad they will have some one on one time together. Michael starts school Wednesday and he is very excited. We are taking him to his pediatrition at home on Tuesday to follow up with the problem he was having last week.

Dr. Santana told us we should be in NY in about 3 weeks from Monday. Hopefully we will know something more definite next week.

We have truly enjoyed all the messages on Mitchel's website. They have encouraged us so much. Mike and I have been praying together as a team and we are believing and expecting great things to come.

Taking one day at a time,

Mary

Saturday, August 13, 2005 10:49 AM CDT

Another hot day in Memphis!

We are still hanging in there, Mitchel is feeling pretty good. He has one more day of chemo. It only last for 30 minutes, Yeah! He got a fever last night of 103 and when I came in this morning Mike had a cold rag on his head. His fever is going up and down, so they are just watching him. All his cultures have come back negative so that is good news for no infection. He is relaxed just watching the Teletubies and he took a bath and played a little bit. We should get out of the hospital in the next few days. I think it will be Monday but we know around here to take one day at a time.

Mike is leaving this afternoon. He wants so bad to be in church in the morning. I am glad that he will be able to go with Michael. It will be good for Michael to see his old friends again. He is so excited about starting school on Wednesday. It is going to be double duty for Mike as he works his job and takes care of Michael. Big sister will be picking him up after school everyday and Grandma Bailey will be just a phone call away. I will be praying for you honey!

Hope everyone has a great weekend! We love you all!

Mike, Mary and boys

Sunday, August 14, 2005 11:53 AM CDT

Good news!

We are busting out of the hospital this afternoon! Yeah!!!! Back to the RMH house for now. We will see Dr. Santana tomorrow and Mitchel is ready with his question. When can we go back to Bartlesville? He cannot wait to ask him. We are hoping to have a few days home before going to NY. Mitchel will need 3 days of scans in NY before we start his treatment, so we should be traveling there soon.

His ANC is 1100 today and he is feeling pretty good. He will start his GCSF shots today and continue them until his counts recover. He did receive a blood transfusion this morning his Hemoglobin in only 7. It should be around 8 or higher, so this should give some energy. He is still hooked up to TPN until he starts eating again. I will be working with him this week to get him back to a regular diet.

Mike and Michael made it home safe and sound around 8:30 last night. They were both so glad to be home, we got a call this morning and it has been raining there all night. They went to church this morning. We miss them so much. Mitchel cried for Michael last night, we made a picture frame and put a picture of Michael in it to hang on his IV pole. That cheered him up.

Well I better start packing up the room!

Love to all,

Mary

Tuesday, August 16, 2005 11:54 AM CDT

Surprise! We are home as of last night!!!!

During our visit to the clinic yesterday we asked Dr. Santana when we could go home, I was thinking maybe the end of the week, but he said would you like to go home today. I was pleasantly surprised that he would let us go so quickly after getting chemo, but he has full confidents in the doctors in Tulsa if Mitchel should have zero counts with fever, which puts you in the hospital for a short visit. Mitchel was so excited about the news, he jump up and down and yelled yeah!

We packed up and checked out of the RMH arriving home last night around 9:30. He was so glad to be home. He has been playing with Michael all morning, which I think is the best medicine for him. They are like best friends. I remember the first night Michael and Mike left the hospital last week to return home Mitchel cried for Michael. We made a picture frame and I had a picture of Michael I put in it and hung if from his IV pole. That made him so happy. I probably have already told you this story but I think it is a beautiful thing to have such closeness between the two.

The plan for now is to stay here and let Mitchel recoup from his chemo of last week. The scheduler from NY called this morning to talk to me about Mitchel's scans. They are making the appointment for the 1st of September. He will need a bone marrow biopsy, MIBG and a cat scan. I should find out the exact dates this afternoon.

I took Michael to the doctor this morning about his problem he has been experiencing with blood in his urine. His urinalysis came back with a small trace of blood so we are taking him to a urologist next week. It was so good to see the boy's pediatrician this morning, the last time I saw her was at the beginning stages of trying to figure out what was wrong with Mitchel. It brought back so many memories. I was not prepared for all the questions Michael had for me but after thinking about them I can certainly understand why he was a little afraid. On our way in the office Michael wanted to know if his peepee had cancer. My heart sank and I realized that his mind was thinking about those things. I felt so bad that he had to be afraid after seeing what his brother has been through.

For right now we are keeping Mitchel pretty much isolated, we want him to be in the best health for his treatment in NY. He will get his labs checked 3 times a week and he will have to wear his mask everywhere outside of home. He is still on TPN and his regular medicine. Dr Santana wants him to stay on TPN until we go to NY. This will help stabalize his diet.

Sorry for such a long journal entry today, we have alot happening right now. We appreciate all of you and love you very much.

Good to be home,

Mary

Wednesday, August 17, 2005 8:51 AM CDT

Happy Wednesday everyone,

Mitchel and I just dropped Michael off to school. I must say that God did know all along in my heart that I wanted to be here for this special morning. What an awesome God we serve.

Mitchel was sad that Michael was going to be gone all day. He will adjust just like he did last year. Mitchel and I will have some one on one time together and I am looking forward to that. We are not sure when he will be able to attend school, but I know the timing will be perfect.

Today we are going to Tulsa for his labs to be checked, we will be going 3 days a week until we go to NY.

Last night I was watching TV and came across an interview with Luci Swindoll, she is part of the Women of Faith group. She said the most amazing things last night that really touched my heart. One thing she described about our behaviour just felt like she was talking directly to me. She was describing how we are blessed with the light of Jesus shining on us, but how we sometimes choose to live our lives will cast a shadow that keeps that light from us. I have been guilty of that so many times. The most amazing part about what she said was that our God has an abundance of mercy and compasion for us and he is there ready at any time to give us the exact amount we need.

I have received the most amazing messages on Mitchel's website, thank you all so much for the encourgement and wisdom you have give us all.

Please continue to pray for all the families at St. Jude, the are amazing people. We are believing in Mitchel's complete healing and thank God for it everyday.

Feeling the light,

Mary

Thursday, August 18, 2005 8:57 AM CDT

What a beautiful morning we have today!

Mitchel and I just returned from taking Michael to school. Right after Mitchel got up he wanted to know where we were going and I told him to take Michael to school. His comment was "AGAIN". I think he thought it was a one time deal, or he was hoping for that anyway. He is now playing his nintendo and is happy.

He sneezed this morning and some blood came out so he will probably need platelets tomorrow. Yesterday his labs were ANC 0, platelets 55,000 and hemoglobin 9.5. We are just watching him and checking him frequently for a fever. He will have to be admitted into the hospital with fever and the ANC count under 500.

I just read Mitchel's friend Zachary's website, and it is one you don't want to miss. His mom, Betty Jo, put some of the cutest stories Zachary has made up with is wonderful imagination. He is such a joy to be around. caringbridge/pa/ilovezachary. Please continue to pray for him, he is starting a new series of chemo next week.

Today I will finally get to the laundry and cleaning up the house. It has been put off so long, I have been a little busy. Next week Mitchel and I will be flying back to St. Jude on Wednesday the return on Friday. He will be having a bone scan, EKG and Echo test. Talk about living out of a suitcase, I don't see any point in hanging up any of my clothes as much traveling as we do. As of right now we are suppose to leave for New York on the 7th of September and not return until the 23. Mitchel will have a bone marrow biopsy, MIBG scan and a cat scan before he starts his antibody treatment. Mike will only be staying for a week and my step mother, Laura, will be staying the 2nd week. I am so glad she is coming, we will have a great time together.

We got a call Tuesday and were notified that our application with the National Cancer Fund had been declined even though it had been approved back in May to pay for flights, food and cab fare. So we will be paying for all our flights and all the other expenses that go along with the trips to NY. I have been trying to find the best flights available and have even contacted Corporate Angel Flight. This is a organization that allows you to fly with a Corporation on a private jet to your destination for free. Even though we have money set aside from fund raisers we were hoping to use these funds mostly to cover what the insurance will not cover for such an expensive treatment. We will continue to trust the lord and know he is in control.

On a note about Michael his appointment with the urologist is scheduled for August 30 and we ask for specific prayer that he will be healthy from head to toe and they will be able to find the reason for the traces of blood in his urine.

Mitchel and I have a wonderful afternoon planned, not doing much of anything. Just enjoying our time at home.

Our hearts are so filled with joy knowing how much we are loved by you all. Thank you all for your continued prayers for our little hero. He is the greatest!

Love to all,

Mary

Friday, August 19, 2005 8:56 AM CDT

Update 11:00 pm

Mitchel was admitted to St. Francis hospital this afternoon for fever and 0 counts. He will be there until his counts recover. We are in room 2406 on the 2nd floor.

Thanks for checking in on us.

Happy Friday!

We are getting ready to leave for Tulsa this morning, Mitchel needs his labs checked. He has been feeling the affect of having low counts and yesterday he took a much need 2 hour nap. His temperature has been border line since last night so we are keeping an eye on it.

I cannot tell you had glad I am to be home. I have truly enjoyed every minute. Mitchel and I had a great day yesterday, he wanted to be with me every second. We jumped on the trampoline together and when he took him nap he wanted to make sure I was staying close by. He snuggled in on the couch close to the laundry room. I love him so much.

Next week we will fly out to Memphis on Wednesday, Aug 24 and return back on Friday. Glad we will have a few more days home before going to NY. Mitchel's scans in NY are scheduled for the week of Sept 7. We will make a 3 day trip then and return back to NY for his antibody therapy to start on the 19th of September. Mitchel and I are becoming quite the little travelars. He is such a great travelar.

Hope everyone has a great weekend, we are looking forward to being together as a family here at home.

Glad to be home,

Mary

Sunday, August 21, 2005 10:12 PM CDT

Hello everyone,

Just wanted to give you all a quick update. Mitchel is still in the hospital at St. Francis in Tulsa. He tested positive for an infection in his line that they use to administer all his medications and have started him on antibiotics. We are a little puzzled why he still has a high fever even with the antibiotics being in his system for already 48 hours. His temperature yesterday was 39.9c-40.2c most of the day. (104 degrees) He was so miserable yesterday not moving much and sleeping alot. Today he has been talking, watching TV and playing with his game cube. We hope his fever will go away soon so he can start to feel better.

We will visit with the doctor in the morning about any further tests that should be done since his fever is not going away. I will keep you all posted.

Michael is here at home with me tonight and he has spent the last couple of days with big sister. He loves that!

I will take him to school tomorrow and return back to the hospital to let Mike go to work.

Please pray for all of us we are exhustated and worried about Mitchel. Mitchel needs his fever to break and his immune system to build strength. Right now his ANC is 0 so he has no way to fight off the infection.

Love to all,

Mary

Monday, August 22, 2005 6:17 PM CDT

Hello everyone this is Rachelle updating for her mom. Mitchel is feeling lots better. His counts are still zero, but his fever is coming down. He is still in the hospital, and we are hoping we will get out by this weekend. Thank you for all your prayers, We will keep you all updated.
Rachelle

Tuesday, August 23, 2005 5:10 PM CDT

Update: 7:30

Mike just called and the doctor has ordered a cat scan of Mitchel's kidney and liver. They took him down tonight for the scan and we hope to have results in the morning.

Hi everyone,

I cannot tell you how glad I am to home right now, I am so tired. The stress over the last few days has taken a toll on me. Mitchel is still running a fever and his ANC is still 0. We are expecting his counts to come up by this weekend. Mitchel had a pretty rough night last night. He was screaming around 2:00 AM for his stomach medicine. Because of the timing the only thing he could get at that time was phenagrin (?) which we are not crazy about, but what can you do when your child is screaming for something. About 30 minutes later they gave him his scheduled benedryl, which should have been staggered with the other medicine but I guess they did not pay attention to that, so he started vommiting. It was just too much on his stomach. I was not a very nice person last night but Mitchel has to suffer enough without mistakes like that happening. Lord, please give me patience.

All I can think about is getting Mitchel better. I am constantly asking the doctors about everything, they probably want me back at St. Jude, which would be fine with me.

They have stopped one antibiotic that has not proven to be sensitive to what grew on his cultures and they replaced with one that is. I am hoping this will help him feel a little better. His hemoglobin was only 7 today and he had to receive a transfusion, he started to feel better when I left around 3:30. Your hemoglobin is what takes oxygen throughout your body so when it is low you can feel very weak and tired. His platelets are around 55,000 and he probably will need a transfusion soon. Doctors are saying when his ANC starts to come up he will begin to heal from that, the antibiotics can only do so much.

We are scheduled to leave for St. Jude a week from today for scans and Dr. visit. I want so bad to make this trip so Dr. Santana can look at everything that has been going on these last few days. He is such a awesome doctor.

Please pray for Mitchel's speedy recovery and for him to find rest and comfort. My tears cannot stop falling until he starts to get better. I am leaning on my faith everyday.

Thank you for checking in on us,

Mary

Thursday, August 25, 2005 6:40 PM CDT

Sorry it has taken so long to update. I walked Mike through all the steps of how to update the journal yesterday and I think he missed a few steps because tonight I was surprised it was not updated.

Anyway the test results from his cat scan came back ALL CLEAR. They looked at his liver, spleen, gallbladder, kidneys and lungs. Nothing looked abnormal. Praise God!

His fever was gone today for a most of the day but is up down tonight. He usually has fever in the evening, when he is receiving most of his antibiotics. He started a new antibiotic called Amphotericin B which can take care of alot different infections. He tested positive for a strep infection veridan (sp) on Friday and they said it was in his line. He has not had any new cultures grow since then. They tested all his cultures for fungal infection and his urine, all came back negative. He is also on vancomycin and clyndomycin. His white blood count showed a slight increase today to 0.1. This is small but shows improvement. We are continuing to believe in his speedy recovery and trust that God will give the doctors wisdom everyday.

Mike and I are hanging in there taking turns staying with Mitchel. We both enjoy being home with Michael, the boys are really hoping they can see each other this weekend. They miss each other so much. We will take Michael up there on Saturday and let them play for a while. We are hoping to get out on Sunday so we can have at least one day home before traveling back to St. Jude on Tuesday. Mitchel and I will be back on Thursday, then we will have a few more days at home before traveling to NY on the following Tuesday, September 6. That will be a short trip for scans, so we will only be staying two nights. I am so glad we are not traveling on September 11, I would not feel comfortable at all with that.

Our daughter Rachelle has been helping us out so much, she is so grown up. She has been watching Michael for us everynight and picking him up from school. Thank you so much, we love you!

All of your prayers are appreciated so much, we are so blessed to be surrounded by so much love and support. We could not make it through these tough days without each and everyone of you.

Mitchel's prayer list:

- That he will be healed completely from cancer
- His bone marrow will begin to make white blood cells and
work on it's own.
- We will get out of the hospital this weekend
- Mike and I will be given peace and comfort as we handle
each day.
- Wisdom for all Mitchel's doctors
- Please lift Michael up in a special prayer, he is the
best big brother and we want him to understand what
Mitchel is going through.

Phil 4:7

And the peace of God, which surpasses all comprehension, shall guard your hearts and your minds in Christ Jesus.

Accepting his peace,

Mary

Saturday, August 27, 2005 5:30 PM CDT

Good news!

We are out of the hospital!!!!!

Yesterday the doctors at St. Francis told us it would probably be Monday before we get out. We were praying and believing that it would be this weekend. I guess the doctors did not believe as we did because nothing was prepared for us to get out today, but with a little persuasion from my husband we got out. Mitchel's ANC came up to 800 and he has not had a fever since Thursday. I think we are the only parents that have requested to administer antibiotics at home without the help of a nurse. We have been doing this for so long it just seems very natural to us. We did find out why Mitchel's stomach was hurting so much, on Friday the doctor wanted to know if we have ever tried any zantac for his stomach, Mike and I both looked at each other and said together, you mean they have not been putting zantac in his TPN????? It was right there on the TPN formula, somehow it got missed. Well needless to say the doctor apologized and they ordered it STAT. No more complaining about his stomach, thank goodness.

We will be spending all weekend at home enjoying being a family. Mitchel was so excited as we pulled into Bartlesville. He said Yeah! Bartlesville!!!!! We are home!!!! He could not wait to see his room and jump on his bed.

Thank you all for your continued prayers! God has continued to be faithful in comforting us every step of the way.

Love to all,

Mary

Monday, August 29, 2005 2:40 PM CDT

Happy Monday,

We just got home from Tulsa, Mitchel's labs were done this morning. His ANC is 9500, hemoglobin is 10.5 and his platelet count is 36,000. He has been playing non stop since he got home. He is taking a nap right now, he wore himself out.

We are leaving tomorrow for Memphis, we are praying that our flight will make it without any delays or cancellations. If so we may just jump in the car and drive.

We had a wonderful weekend after getting out of the hospital Saturday. We just loved being together with our boys.

Not much else to say other than we praise God for his continued love and strength. I say this because I sometimes wonder how I manage to make it through all of this, but I know that my courage comes from God.

Thank you for checking in on us and keeping us in your prayers.

Mary

Tuesday, August 30, 2005 1:12 PM CDT

Hi everyone,

Well we are off to Memphis in about an hour. Mitchel is not too excited about going but he knows it will only be for a few days.

He is feeling really good, lots of energy. I will have the doctors look at his eye he seems to have some kind of irritation going on in one of them. No fevers and his counts should be on the rise.

I took Michael to the doctor this morning and he ended up having a minor surgical procedure done. He was having burning and traces of blood in his urine. The doctor said he just needed to open up the opening a little more, it was causing him to have too much pressure coming through at once, OUCH! Sorry guys! Just to be on the safe side he did go ahead and order a ultra sound of his kidneys, which I was glad about. That will not be done until next week. He is home today and seems to be feeling just fine.

Mitchel and I will return Thursday, please pray that we have a safe trip.

We are looking forward to seeing our friends at St. Jude again.

Love to all,

Mary

Thursday, September 1, 2005 10:57 AM CDT

Update 6:00 PM

Below is a link to the St. Jude website, there is a picture of Michael on that page. He is on the third row down 2nd picture. I love that picture!

http://www.stjude.org/images-stjude/0,4428,853_5423_18891,00.html

We are home and it feels so great!

Hi there,

We are getting ready to leave Memphis. Everything went really well here. Mitchel's bone scan looks great and all his other tests look great too.

We truly enjoyed seeing all of our friends here at St. Jude. We will miss them alot!

Mitchel did have to have molds made of his ankles to make braces for his legs. He continues to walk on his tip toes and everymorning he is stiff in he ankles so I know this well help correct them.

Hope all is well with everyone, thank you all so much for your continued prayers.

Ready to be home again,

Mary

Saturday, September 3, 2005 9:42 AM CDT

Happy Saturday,

As I started writing I had to stop and think is this Saturday. All my days are running together, yesterday I woke up from a much needed nap and had to really think about where I was for a minute. I thought I was in Memphis. That was such a strange feeling.

Mitchel and I took Michael to school yesterday and so we had the whole day together. He loves for me to jump on the trampoline with him, watch cartoon and just snuggle. I truly cherish every second, I love him so much.

His highlight of the day is picking Michael up from school. My daughter came over and we spent the afternoon together, it is so great having all my children together again. The boys love their big sister, if you ask them her name they will tell you, Sister!

We are traveling up to see Mike's family this weekend, they live in Kansas. It will be so much fun seeing everyone and have a moment to relax.

Mitchel and I will be traveling in style next week, Corporate Angel Network has worked out a flight to and from New York for his appointments. We will be traveling on Williams Company private jet. A nice lady from Williams Company called yesterday and wanted to know what Mitchel would eat for lunch, they wanted to make sure he had something for lunch that he liked. Everyone has been so wonderful. My sister in law, Dianne, will be traveling with us and we are very excited about that.

There are no words to describe how wonderful of a place St. Jude is. It is a miracle in it self, we are so blessed to have such a place here in the United States. All the staff there treat their patients with such respect and they show their love every day. Thank you all so much for all the wonderful memories you have given us, and how you have taken care of us during this time of difficulty. I met a couple in the cafeteria Wednesday that had just been told about their son's neuroblastoma. He is 21 months old, my heart just hurt for them because I know exactly what they are going through. It is so hard during the beginning, getting used to all the new environments and trying to comprehend how this could happen to your child. I know they will be taken care of, they are in the most wonderful place. A place that gives you peace during a storm. THANK YOU ST. JUDE FOR EVERYTHING!!!!!!

As we left the clinic Thursday Mitchel and I both got a big hug from Dr. Santana, he wished us well on our next journey. He said he felt confident in the next treatment for Mitchel. He knows this is the best chance for Mitchel to be free from cancer. Dr. Santana has a way of making everyone feel peace in your childs treatment. He is very honest and tells you the facts, he continues to go the extra mile for all his patients. Thank you so much Dr. Santana, you are the best!

Sorry such a long journal today, little by little I am letting all my feelings out. I just have not had time to stop and express how I feel.

Love to all,

Mary

Monday, September 5, 2005 7:24 PM CDT

Happy Labor Day!

The new picture on the website is of Mitchel, green shirt, and Zachary. We ran into them at clinic on Thursday.

We are packing again for our trip tomorrow. Mitchel is excited about going to Central Park and visit the Zoo there. He is also excited about his Aunt Dianne going with us.

We spent the weekend with Mike's family and the boys had a great time. They love going to grandma's so much. We went fishing yesterday and had a wienner roast, then we went to play putt-putt and rode the train in Independence, Ks. It was so nice to relax and see the boys have so much fun.

Thank you for all your continued prayers. We continue to lean on our faith and know that God is taking care of us. We also continue to pray for Mitchel's complete healing.
It feels so good to see him laugh and run around. He loves life so much!

Love to all,

Mary

Wednesday, September 7, 2005 10:16 AM CDT

Hello from New York City,

We made it in yesterday around 3:30, riding in style with Williams Company. I have never flewn on a private jet so it quite exciting for us all. Mitchel loved being spoiled by all the gracious people who took very good care of us. My sister in law Dianne and I were talking about all the places we wanted to visit, we could not wait to go to central park. Well yesterday we got checked in to the Ronald McDonald House and then it was off to find some great food. We made it around the corner and found the perfect spot. As we were eating Mitchel started to complain about his stomach. We decided to stay put around RMH and Mitchel wanted to go to sleep about 7:00 which is very unusual for him. Long story short we ended up inpatient at Memorial Sloan Kettering Hospital around 8:30 pm last night, Mitchel got a fever and I was not sure what his counts were. After spending the night in a chair, Mitchel got a bed, we were taken upstairs around 7:00 am this morning to finally get him in his room. He has tested negative for everything so far and we hope to get out tomorrow. All the doctors have been in to meet Mitchel and they all love his personality. He is full of jokes and ready for plenty of laughs.

Mitchels counts are excellent, but since he did test positive a few weeks ago for an infection they want to make sure it is not creeping back in his lines again.

We will be traveling back on Friday and so that should give us some time to explore a little bit. Mitchel really wants to go to Central Park and see the zoo. My sister in law is such a trooper she if finding out first hand what my life is all about right now.

We will update you as we find out when we will get out. We are excited to be here and get to know the wonderful staff at the hospital.

Mitchel is getting ready for his cat scan and bone marrow biopsy. They perform a bone marrow biopsy in 4 places here, both back hips and both front hips, so he might be a little sore tonight, as he has never had the front hips done. The cat scan is done the same.

Thank you for your prayers, we appreciate them so much!

Loving New York,

Mary

Wednesday, September 7, 2005 10:14 AM CDT

Goood Morning everyone, Mary and Mitchel are in New York as of yesterday. He had a fever last night, and had to go spend the night in the hospital. They gave him fluids and he no longer has a fever. He has tests today and tommorow, and will be back Friday morning. It has been a while since I have done a journal entry so I want to express my gratitude and thanks for all the many prayers and support all of you have given us this last 11 months.
I know in my heart that prayer is the reason Mitchel is still with us, The Dr. at St. Francis in Tulsa told me that he was worried about getting Mitchel to St. Jude in time last year. He was that sick. So please keep praying for Mitchel's healing and full recovery.

Holding the fort, Mike and Michael

Friday, September 9, 2005 1:10 PM CDT

Home sweet home,

Finally we are home and Mitchel is doing great! He has been through alot this week. His MIBG scan showed one place completely gone, which was on his arm, however he has a place on his collar bone and both femur bones in his legs still showing up, these sites have been there before so they are considered stable. Dr. Kushner wants to do radiation on his legs after he finishes his protocol. We had a lengthy meeting with Dr. Kushner yesterday going over everything that is coming up. First Mitchel is being put on a new study with the 3F8. He will be the 5th patient to be on it. It consists of 2 rounds of high dose 3F8, each round last two weeks and they are two weeks apart. The dose is actually doubled from the original study and he will also be receiving GMCSF injections daily with the 3F8. The 3F8 is the antibody therapy. After those two rounds he will have radiation and then we can decide whether to continue on with the lower dose 3F8 or put him on accutane. The 3F8 is much more effective than the accutane so we will probably go with the 3F8. Neuroblastoma has such a high risk for recurrence that we want to block out any chance of it coming back.

Mitchel was released from the hospital yesterday afternoon and we made it through Central Park and a taxi ride by Time Square on our way back to Ronald House. Mitchel rode the carousel and loved it. He fell asleep in his stroller so Dianne and I found a cute little mexican restaraunt not too far from the RMH and sat outside for some great food. It felt so good to just set and relax for a minute. This we got up at 6:00 to be ready for our car pick up at 7:30. It is so much faster traveling on the corporate jets, we have all been spoiled by the wonderful people from Williams Companies. Thank you all so much for participating in such a great program, Corporate Angel Network.

We will be taking it easy this weekend. Thank you all so much for your continued prayers. We are so encouraged by everyone. God continues to give us strength.

Mary

Monday, September 12, 2005 8:45 PM CDT

Update Tuesday 11:51 AM

Mitchel has a fever again and we are off to St. Francis in Tulsa for cultures, labs etc. Michael had a fever last night so it could just be something they are passing around. I am ready to get off this ride, it is not any fun!!!!! Dear God, please hear my prayers I am feeling helpless and weak at the moment. Please join us in prayer as we continue to try and keep it together, this is such a hard battle.

Happy Monday,

We are doing great! Mitchel is so amazing, he is feeling so great. I keep telling everyone other than being bald he does not look like he has cancer. He has been all smiles and laughter these days.

Mike and I had the opportunity to attend our church yesterday and we were so blessed. Our church family is so amazing, they have continued to be with us all the way. Thank you all at Grace, we love you!

We will be traveling on a commercial flight this weekend, I was getting a little spoiled with the corporate jet thing, back to reality I guess. I hope Mitchel understands that the pilots cannot allow him to come up front and look out their windows and push buttons. Mike will be with us and that will make up for it all. We will love having him with us on this trip.

We are still waiting on the report of the bone marrow biopsy, hopefully Dr. Kushner will call us tomorrow.

I better go, the kids are getting ready for bed.

Love to all,

Mary

Tuesday, September 13, 2005 9:05 PM CDT

What a day!!!!!!

We ended up taking Mitchel in for a fever this afternoon and they decided to keep him. He had stomach cramps and a little blood in his stool. Tests and more tests, more antibiotics. When I left the hospital tonight he was feeling great and eating everthing in sight. He fever only lasted a few hours. The doctors are running tests on just about everything since his white blood count was 28.8 which is extremely high. They know his body is fighting off something. I spoke with Dr. Kushner, his NY doctor, this afternoon and with this new development Mitchel cannot start his antibody therapy next week, so it is postponed until the following week. I was so dissapointed, but he assured me that everything will be okay just one week delay will not hurt a thing. Mitchel's bone marrow biopsy came back showing positive in just one hip and it is less than 5%. This is good news because the last one showed both hips positive. We take what we can get these days.

On top of everything else today, Michael has come down with something. He was crying tonight about his ear hurting and had a temp of 102. This is a kid that never complains so we know he was hurting real bad. I will be taking him in first thing in the morning.

As we journey through these difficult days we hold on tight to our promise that God has given us. Some days seem unbearable, but we always make it through. We have seen our son suffer through so much, but we are not about to give up, we know that JOY comes in the morning. I spent some time this morning asking God all my why's and he sent me comfort, it was the same feeling I have felt before when I was cold and I went outside to let the sun warm me up.

You all have been such an encouragement to us, thank you so much. We continue to pray for all the families that have come across our paths, there are so many children that have cancer, and we know exactly how their parents feel.

Love to all,

Mary

Wednesday, September 14, 2005 3:47 PM CDT

Hello everyone,

I hope everyone reading this is having a great day! We have been very busy these last few days as you can imagine.

Mitchel and dad are at the hospital in Tulsa waiting to be discharged. Mitchel's fever only lasted a few hours and nothing seems to be growing on any cultures. We may never know why he is having fevers sometimes. Mitchel will stay on antibiotics until Saturday and we will return to his doctor in Tulsa on Monday. We are scheduled to start the antibody therapy on Monday the 26th. This will give me more time to get the GMCSF approved through our insurance company, as of yet the preauthorization form is still pending. Once the medication is despensed you cannot go back and get it paid for if it was not approved.

Michael has an ear infection and started on his own antibiotic this afternoon. I have been home with him all day, he had a fever last night. Mike ended up staying with Mitchel last night and thank goodness our family has been able to help out at the hospital since Mike had to get some work done today. Some days you just feel stretched so thin and this has been one of those times.

This type of schedule has just become a part of our lives and we know we have no choice but to keep going. Thank you all for your encouraging words, it helps us so much as we continue going forward.

Mary

Thursday, September 15, 2005 10:24 AM CDT

Happy Thursday,

We are all settled back into our little nest. As we try to get back to a normal schedule we find ourselves not knowing what normal is anymore. Every single day brings something new.

I am so excited to see little sprouts of eyelashes coming in on Mitchel's baby blues. The last time this happended they just grew in overnight. He will start to get hair sprouts next. He is back to his old self, running around just feeling great! Michael went back to school today and he is feeling better. No fever for him since Tuesday night.

I told Mike this morning Mitchel is going to stay inside the house and only leave for his doctor appointment on Monday. I know we cannot protect him from every germ but this has to help a little. I want him to be ready for his treatment. We are praying for no more delays!!!

Well Mitchel wants my full attention so I better go!

Love to all,

Mary

Monday, September 19, 2005 1:32 PM CDT

Happy Monday,

We just returned from the clinic and Mitchel's counts are beautiful. His ANC is 3591, hemo 10.1, platelet 283,000.

He is full of life and running around non stop.

We had a perfect weekend just being a family at home. We enjoyed every minute with our boys.

Mitchel will start his injections on Wednesday as part of his treatment. Then we will leave on Sunday for NY.

Hope everyone has a great week.

Love to all,

Mary

Wednesday, September 21, 2005 3:02 PM CDT

Happy Wednesday,

Hope everyone is having a great day! We have slowly but surely been able to relax and enjoy our week. Michael had another fever the other night so we took him back to his doctor yesterday and his ear infection had not cleared up yet. He is another antibiotic that is stronger. This should take care of it. I have been trying to keep the boys apart as much as possible just in case Michael has something else that could be contagious. Keeping them apart is much harder than I thought, since they are such good friends. I make sure they keep their hands washed quite freqently.

Dr. Kushner called this morning and I told him we were looking forward to seeing him bright and early Monday morning. Mitchel started his injections this morning and he was so good about it. I said a prayer before starting and just asked God to let this go as easy as possible. I was able to successfully put in his little arm port for his injections. Thank you God!

Mitchel and I along with my step mother will be flying out on Sunday, and we have managed to catch another flight with Corporate Angel Network. We will be leaving from Oklahoma City with a corporation that has generously offered us a ride. Thank you God!

I have been enjoying my boys all week. They are constantly asking me to jump on the trampoline. That seems to be their favorite thing to do these days. I cannot wait until it cools off.

Love to all,

Mary

Thursday, September 22, 2005 1:14 PM CDT

Hi everyone,

What a day this has been already. I have had to keep the boys separated because Michael continues to have a fever during the night. Poor Michael is set up in our room and I have been trying to keep Mitchel entertained to keep his mind off of playing with Michael. This is so hard and so stressful. I feel like I am working at the hospital and I have two rooms with two patients. They both let me know when they need something and it is usually at the same time. Mitchel does wonder around and goes outside but he is sad that Michael can not play.

I cannot tell you how many prayers I have said as I am taking temperatures and giving each one of them their medicines. I have been so worried about Mitchel getting something from Michael. This would be the worst thing that cold happen, another delay on his treatment. Not good! I keep reminding God of this. If we could just get to Sunday only 3 more days.

Well I hear someone calling for their nurse better go!

Mary

Saturday, September 24, 2005 8:25 PM CDT

Hi everyone,

Sorry it has taken me so long to update. I have been living out of a suitcase the last couple of days. Since Michael started getting worse with his illness on Thursday we decided to get the boys separated and not take any chances on Mitchel catching anything. I left and took Mitchel to Mike's mothers in Kansas. We came back home today and I packed for our NY trip while Mike took Mitchel out for a drive and a little putting on the golf course.

We are now at my brothers house in Tulsa for the night and we will catch out plane in the morning to NY.

I will be glad when we get there, maybe I can finally relax for a minute.

The good news is Mitchel is feeing so great! Thank goodness he did not catch what Michael has. We think Michael has a virus plus an ear infection. If he is not better by Monday he will go the doctor.

I am able to make it through the extreme tough times only by the grace of God. He is holding me up right now and I am so thankful. He has sent many angels my way to keep me comforted.

Thank you so much Kris for the lovely gift you brought over the other day. I cannot wait to get back and enjoy it. You are awesome!

I will be updating when I can from NY to let you know how his treatment is going.

Please pray for Mike as he holds the fort down and takes care of Michael. He will be joining us next Sunday in New York.

We love each and everyone of you!

Mary

Monday, September 26, 2005 3:57 PM CDT

Hello from New York,

Well we made it through the first treatment. We had about 15 minutes of very intense pain then he fell asleep. They monitored him from head to toe while he was receiving his treatment. The staff here is very nice and makes you feel very comfortable.

Mitchel has been talking to everyone non stop. He has come out of his shell so much through all of this. Dr. Kushner asked me this morning if he always talks this much.

We will return everyday through Friday to receive his treatment, he will have the weekend off and then start again on Monday. Since he receives a dose of dialudid for the pain he will probably be sleeping alot this week. Dialudid is in the morphine family and he responded very well to it. I have read all the information about the treatment but I understand everything alot better now having gone through it.

The RMH is having a western party tonight, I hope Mitchel feels like going, they have set up a room with hay bales and will have alot of food. We will feel like we are home for a few minutes with the barbeque and western wear.

I cannot thank you all enough for all your precious messages on his website. It is very moving to me that so many people care about us and want to continue praying for us.

Love to all,

Mary

Wednesday, September 28, 2005 2:04 PM CDT

Hello everyone,

Thank you for checking in on us. We have made it through day 3 and Mitchel is resting now. Yesterday was a little bit more painful than Monday and today was the worst. His pain during the treatment seems to be getting stronger. They do manange it well with medication and that helps alot. When he is feeling the pain he sweats and today he broke into hives. They gave him benadryl for the hives and that seemed to help. Everynight he sleeps from the time we leave the hospital until we wake up the next day. He does have a few times where he gets up to go to the bathroom then goes right back to sleep.

This morning we did not have to be here so early so he had a great morning. He walked almost the whole way to the hospital before climbing into the stroller. He loves walking and going into the shops to order whatever he wants. He knows we will say yes, Ha!

I can not believe that he does not say anything about coming back to the place every morning for more pain. He actually likes it here and is ready to return for a good time in the play room. He did tell the nurse that he did not want his medicine today, but I think he already knows he is not going to get out of it so he just helps the nurses hook up his lines.

Thank goodness he is all smiles in the mornings, I enjoy that time with him. It is really the only time I have to see his wonderful personality before he goes through his treatment and falls asleep. He has been asking for Daddy everyday and cannot wait until he arrives. He does a count down everynight.

Well I better get back into the room. They are watching his blood pressure right now, it seems to be a little high. They said sometimes this can be a side effect of the treatment and it should go down soon.

I am staying strong and believing in my faith. That is what gets me through these tough days. I have met some wonderful families here, they have been so nice.

Love to all,

Mary

Thursday, September 29, 2005 8:20 PM CDT

Happy Thursday,

We have survived yet another day. This week is pleasantly going by fast. Mitchel had a great night last night. It was his first night to not sleep the whole afternoon and into the evening. We decided to go for a walk after leaving the hospital and even though he was sleeping the whole time I think he enjoyed getting out a little bit. He woke up around 6:00 pm and played non stop until 10:00. It was so good to see him in such good spirits. The RMH has a great playroom for the kids and activities all the time. He even decided to help the guy call out the bingo numbers and help everyone with their game of bingo.

Today we returned from the hospital and he slept until 6:00 then it was time for playing and he is still going. Today's pain from his treatment was intense but did not last as long as yesterday. He again broke out in hives, but they gave him benadryl to clear them up. He continues to wake up in the best of moods.

The RMH is taking anyone interested on a trip to Maine this weekend, I wish so bad we could go but we have to be here Monday morning to start his treatment. It sounds like a wonderful trip. They are providing the transporation and everything. I have always wanted to see Maine, it is so beautiful.

We are down to 3 sleeps on the countdown for Daddy to arrive. Mitchel reminds daddy of this everytime he talks to him on the phone. Michael is excited to spend some time with Grandma Bailey and his Aunt Andrea. They will be keeping him all next week until Mike returns.

Thank you all for your beautiful words on the website, they are such an inspiration to us.

Mary

Friday, September 30, 2005 7:38 PM CDT

TGIF everyone,

I cannot believe this week is almost over. The time has been flying by so quickly.

Mitchel's treatment went the same today as far as the pain except the pain came later in the treatment. I thought for a minute that he was not going to have any pain today. After his treatment we walked all the way down to FAO Swartz Toy store. Mitchel picked out a medium sized zebra stuff animal and he had his arm wrapped around it all the way back to the RMH. We walked alongside central park on 5th street, the weather today was perfect.

Tomorrow Laura is leaving in the morning so it will be just Mitchel and I for the day. I am taking Mitchel to the Central Park Zoo and we are planning a picnic in central park. He is excited about not having to take his tylenol tomorrow. He does not like to take it at all, but he is getting better about it.

We are so excited about having daddy here all next week. Can't wait to see him, we have missed him so much.

Hope everyone has a great weekend,

Mary

Monday, October 3, 2005 7:26 PM CDT

Happy Monday,

We have had a very busy last few days. Starting with Saturday Mitchel and I took a long walk through central park and enjoyed our day so much. Around midnight he was feeing really warm so I took his temperature and sure enough he had one. The doctor told me to bring him on in so off we went to the hospital. They admitted him and we stayed one night. Daddy came in on Sunday just in time to help us make it back to the RMH from the hospital. Mitchel felt great the rest of the day, he was soooo happy to see daddy.

We got up this morning and took Mitchel in at 8:30 to start his treatment and they told us his blood cultures grew an infection so they would have to admit him later in the day. He did have his treatment as usual and then he was checked into the hospital. The doctor is thinking about removing his line since Mitchel has had an infection in his line just a month ago. He does not need the line he has anyway, they can give him his current treatment with a smaller port. This port would allow him to go swimming and take showers, I think he would like it better anyway. We will know something by the end of the week.

We are hoping to only stay in the hospital a few days. We have learned during this journey that you never know what each day will bring. We just have to go with it.

Thank you so much for all your prayers. We appreciate you all.

Mary

Tuesday, October 4, 2005 5:05 PM CDT

Update Wed 9:45 am

Mitchel cultures tested positive for infection gram positive cocci. They are treating him with antibiotics. This infection is very to treat. No word yet on whether they will pull his line.

Happy Tuesday,

I read a message on Mitchel's website that really touched my heart. I know people have been praying for us, but when we are reminded of this and feel the love from our church family we receive such peace and comfort. Thank you all so much for caring so deeply for our family.

We sometimes feel that we have so much weight on our shoulders, we do trust God that he will take that weight from us, but we still feel it now and then. As parents we have experienced so much dealing with Mitchel's cancer. The pain you see your child go through can sometimes be unbearable. Only by his grace can we make it through most of our days.

Mike and I are enjoying our time together, it is not what we wanted being in the hospital but we can still make the best of it. Mitchel is glad to have us both here with him at the same time. When I am gone he asks for me and when Mike is gone he asks for him.

We still do not have any information of the type of infection he has, and the decision to pull his line will come by the end of the week. Today's treatment was less pain but more hives. He is sleeping off the pain medication and should be waking up soon. We are hoping to get out tomorrow, all the blood cultures from Sunday on have not shows any sign of infection.

Please remember our friend Zachary and his parents in your prayers this week, they are going through a really tough time right now and need to make some tough decisions on Zachary's next treatment.

Thank you all so much for all your continued prayers, we love you all,

Mary

Thursday, October 6, 2005 8:10 PM CDT

Hi everyone,

We are out of the hospital as of yesterday afternoon. We have enjoyed being free from the hospital so much. All of the rooms at the hospital are semi private and small so we were very much ready to get out. We shared a room with a orthodox jewish family, their son has cancer. As some of you know it was a holiday for the jewish people and we learned a few of their traditions. They were not allowed to touch anything electrical for the two days of the holiday. This made it difficult for them because everything in a hospital is run on electricity. Mike and I would turn their lights on and off and adjust their son's bed. They spoke yetish (sp) and english but it was hard to understand them. Their son only spoke yetish but he would smile and wave to us. Even though the mother and I live in such different worlds our pain was the same and we shared the same feelings as any mother would about their children and this opened the door for us to visit. She shared with me her feelings about the journey they are beginning with their son. She often told me I don't think I can do this, I told her to believe in her strength, as a mother it would come naturally. As we left yesterday she told me how nice we were and she really enjoyed getting to know us.

Mitchel is feeling just great, tomorrow is his last day of treatment and he cannot wait until the weekend. He will be having his line removed on Monday and we will have a new port put in at home. We ventured out tonight to a barbeque place and then went for ice cream. Mitchel loved the cab ride, as he says wheeeeeeee! They are a little crazy on the roads here.

We cannot wait to get home and be together as a family again. Michael is loving his time with grandma. We talk to him everynight. When Mitchel has his line removed he will be able to swim so we are planning a trip to Kansas City, they have a great lodge their with an heated indoor water park. The boys love going there.

Hope everyone has a great day and thank you all so much for checking in on us. We love you so much!

God is good all the time!

Mary

Sunday, October 9, 2005 3:07 PM CDT

Hi everyone,

We are having a great weekend in NYC. Mitchel and I ventured out to Time Square this afternoon. We went to ToysRUs, what a fabulous place it is. Mitchel and I stayed there for hours. I think he is a little tired this afternoon. We found a great place for pancakes and scramble eggs for a late breakfast and have been enjoying the sights all day. Daddy left this morning and we miss him already.

Tomorrow is Mitchel's bone marrow biopsy, it will show us if the treatment has any affect on cleaning up his marrow or not. We are praying for clear results!

It is hard for me to believe that in three weeks I will be returning here to start this all over again. But we won't focus on that, I will enjoy my 3 weeks at home. Mitchel and I have to make a quick trip over to Memphis to get him fitted for his legs braces. He will mostly wear them at night. He continues to walk on his tiptoes and these braces will help stretch out his ankles to allow him to walk on his heals. Also, during our 3 weeks at home he will need a one night stay at St. Francis to have a port put in. He is having his lines taken out tomorrow during his bone marrow procedure. I know it sounds like we will be very busy at home, but we just appreciate the time in our home when we have it.

Since he will be line free for several weeks we are taking the boys to Kansas City and staying at the Great Wolfe Lodge. This is a great place to get away, they have a heated indoor water park. It is an awesome place and the boys play from morning until night in the water. This will be first time Mitchel has been completely wet in a year. Yipee! He will love it.

As some of you know this month last year is when we discovered Mitchel had cancer. I have reflected back so many times on how much we have been through in a years time. How could someone do so much in one year, it seems like 10 years instead of just one. Mitchel has come a long way with his treatment and he continues to do so well. We are hopeful that this treatment will give him a long a happy life. We have seen a difference already in his strength and endurance just with two weeks of treatment. He has so much energy and feels great. His counts are great too!

Well I better go, Mitchel is wanting me to help him play a video game. We appreciate all your prayers and loving words on his website. They are such an inspiration to us.

Love to all,

Mary

Wednesday, October 12, 2005 9:05 AM CDT

Home Sweet Home!!!!

I cannot tell you how glad we were to touch down on Oklahoma soil. Mitchel did his happy dance from his car seat as soon as he saw the signs for Bartlesville. He loves Bartlesville so much it is the only home he has ever known. As we were waiting for the little bus for Fine Airport Parking Mitchel reminded me that we have to hold up our arm to get a yellow car, just like in NY. We never had trouble getting a cab in NY, how could they resist seeing Mitchel standing there with his little arm up.

Over the last few weeks I have really missed my quiet time in the morning, I have never been one to make excuses but I cannot tell you how intense the schedule is and just the energy you use just thinking about your schedule. Anyway Sunday I started praying about my quiet time, just asking God when will I feel normal again. I asked God for some encouragement and I just left it at that. Well on our way to Chicago on the plane as I was reading the airplane magazine a man came out of nowhere and started talking to me. He said I hope you don't think I am a crazy persone and I hope I do not offend you in any way but I wanted to share something with you that I thought you might find helpful today. He handed me a little devotional book simply called Daily Word. He said that he thought todays devotion would be encouraging to me and walk away. I immediately turned to October 11 and started to read. This is what it said:

PRAY FOR OTHERS:

We may have felt as if a challenge could overwhelm us until we turned to God, affirming an answer to our prayer would be revealed.

Yet often we discover the answer to our prayer, to every prayer, is that we are never alone in any situation. We are one with the spirit of God and with all other children of God. And as we pray for others, affirming the truth of God's blessings for them, we know this is the trust about us also.

On this day, we set aside a few moments to picture a person ready to receive blessings from God. There is a palpable response within us to the activity of Spirit in every fiber of our beings. As we pray for and with other children of God, we bless them and we are blessed.

It is moments like these that make you stop and think, What just happened? Could this be real? God was listening to me. I had to read this devotion a few more times and I was reminded of just how much God does listen to our prayers and gives us encouragement in many different ways. I never saw that man again, but I prayed for him and his family.

As I looked over the little booklet I could not help but smile because I had just asked God to help me find a way in my busy schedule to enjoy my quiet time again. Well this booklet is very small and will fit in my purse, it has a short devotional for each day of the month. I was so encouraged by God's understanding and his answer to me was don't let yourself feel guilty about not having enough time. God truly loves his children and has so much mercy and forgiveness.

He continues to show signs of getting better everyday. He has so much energy and zest for life. His counts are really good and he looks great. He is starting to accumulate more and more hair and his eyebrows and eyelashes are in. The last few days have been a little rough because he is so sore from his bone marrow biopsy. They go in through the hips in the front and the back. The hips in the front are alot more sensitive and have caused him more pain. We had to take the bandages off last night and it was so painful for him. The bandages were sticking to his skin, but today he is feeling great, running around. He just noticed this morning that his buddies, tubes in his chest, were gone. He kept feeling around and finally looked up and said yeah I can go swimming now! He was very excited. We will be taking the bandages off tomorrow and it should be completely healed up in a week. We should have the bone marrow biopsy results by Friday so we will post the results then.

I know that I continue to thank you all over and over again for your encouraging words and prayers but truly we are so blessed and humbled by your kindness. Please continue to pray for Mitchel's complete healing and his strength.

Enjoying my home,

Mary

Thursday, October 13, 2005 9:06 AM CDT

Good morning,

Mitchel and I just dropped Michael at school and we are planning a wonderful day together. I was looking at his hair and it is really coming in, it looks a little darker than before. He has not complained about being sore, so I think he is healing up nicely. Today we are taking off his bandange where his buddies were. He has been feeling around looking for them and has lots of questions.

Next week I will take him in to have blood drawn for his HAMA test and send it off to NY. If it comes back negative then we will return for another round of the 3F8 if it comes back positive then Mitchel's immune system has already built up an resistance to the treatment and there would be no point in giving it to him because it would not work. HAMA stands for Human anti-mouse antibody, as your body receives this treatment is slowly builds up an immune to it. We want him to be able to complete at least four treatments. We also have a meeting scheduled with the surgeon who will be putting in his port. It is the same surgeon who removed his main tumor a year ago. He will be amazed at Mitchel's progress. We also will be traveling back to St. Jude on Thursday the 27 to have Mitchel's braces fitted. We are excited to revisit such an incredible place and see all of our friends. It will be a short trip and we will return that same day.

My daily word for today:

I am a child of God and, therefore, I am worthly of love. I can never be separated from God's love. This sacred, ever-present love is deep within me, offering me acceptance at all times, no matter what missteps I may have taken along the way.

I surely feel special after reading this, God loves his children so much. We are all special!

Have a great day!

Mary

Friday, October 14, 2005 4:44 PM CDT

Hello everyone,

I have been so discouraged all day and decided to write today's journal entry when I felt better. We received the news from Dr. Kushner about Mitchel's bone marrow biopsy, it is still not clear. His front left hip is still showing a small amount of neuroblastoma. I was really hoping it would clear up with just one treatment with the 3F8, I probably set myself up for being so hopeful. All patients respond differently to this treatment. Even though it is a small amount left in his bone marrow all it takes is one little cell to start growing. Mitchel will have another bone marrow biopsy and a MIBG scan after his next round of 3F8, this will keep us in NY for about 3 weeks next time we go.

We keep counting our blessings and know that we have alot to be thankful for.

Hope you all have a great weekend!

Love, Mary

Tuesday, October 18, 2005 9:25 AM CDT

Happy Tuesday,

The last few days have been up and down. My emotions have been all over the place, but I am continuing to believe in my faith and I gather strength everday. Mitchel has been feeling so great, he is running around non stop. He loves having his time with me everyday while Michael is at school. When it is time to pick up brother he is so excited to see him again. They are such good buddies, I know they will always be close. I went to visit the school the other day to visit with Michael's teacher and Michael began to explain to her that because his brother has cancer he cannot come to school right now. I was surprised to hear that because I have never heard him use the C word when talking about his brother. I guess he has been listening. He is always very concerned about Mitchel.

Mitchel and I are going the the Pumpkin Patch today with our friends, he is very excited to pick out a pumpkin. After that we will go to his physical therapy appointment. We are very excited about our trip to the Great Wolf Lodge this weekend. We have not told the boys yet, we learned our lesson a long time ago it is best to wait until we are leaving to tell them. Things can change so quickly with Mitchel and we don't want them to be dissapointed. They will be so excited about going, they love that place.

I have had so many people ask me how we are doing and my answer is always the same, we are doing okay, taking one day at a time. I am not looking forward to being away from my home again, thank goodness I have already met some wonderful families that make being away from home so much easier.

Well we better get going the pumpkins are waiting for us.

Love,

Mary

Thursday, October 20, 2005 3:17 PM CDT

Hi everyone,

Thanks for checking in on us. We have had a busy last few days. Michael is out of school for 3 days, fall break. It was so much fun having them both here yesterday. I did not see them much as they were playing together non stop. They spent hours chasing butterflies, one they named sunny and the other jennie. Not sure how they came up with those names, but they followed them all around calling out their new names. We all jumped on the trampoline and daddy was challenged to doing a front flip, I was not sure after we challenged him if that was such a good idea but he did it anyway. No broken bones!!!!

Mitchel had his appointments this morning, his counts look great. We took his blood over to the UPS store and got it shipped overnight to NY. The clerk ask me what was in the box and I felt a little strange telling her it was my son's blood. We should get the results of the HAMA test Wednesday. We met with the surgeon that will be putting in Mitchel's port on Monday morning at St. Francis Hospital. He said Mitchel looked real good and he did not see any reason to make him stay overnight for the surgery, so it will be done outpatient. He gave Mitchel the thumbs up for going swimming and we finally told the boys that we are leaving in the morning for the Great Wolf Lodge. They are so excited!!!!!!! Mitchel asked the doctor if he could swim since his buddies were out. Last night he practiced swimming in the bath tub he was so proud that he could be under water, except for his head of course. He nows tells me that he knows how to swim and that he will be jumping in. He is still getting used to not hearing "be careful you will get your buddies wet".

I just love every minute I spend with my children. They are so precious! Being a stay at home mom has so many rewards. I am so thankful to have the opportunity to do that.

I just want to say a BIG THANK YOU to Collen Rakes, she is bringing us a wonderful home cooked meal tonight. What an angel she is. Mike works with her and many other awesome ladies in the kitchen at church on Wednesday nights. We love you!!!!!!! She told me my only responsibility tonight will be to light the candles on the table. So that is what I am going to do.

Please continue to pray for Mitchel's complete healing. Thank you all so much for all your support, we have been so fortunate to know just how much you love us.

Well I better start packing!!!

Love to all,

Mary

Sunday, October 23, 2005 11:24 PM CDT

UPDATE 12:00 noon

Mitchel is home now and is feeling good. He is showing signs of feeling a little soar but that is it. He requested a steak and corn for lunch so I have the grill fired up.

Hi everyone,

As you all can see from our pictures we had a wonderful time in Kansas City. The boys played in the water for two days and wanted to stay the whole week. It was so good to see them both enjoy swimming and having fun. We did not swim at all this summer and they have missed it so much.

Mitchel and Mike will be heading for Tulsa in the morning, Mitchel's surgery will be outpatient in the morning at 7:00 AM. I will have to stay here to take Michael to school and then meet Mike at the hospital to bring Mitchel home. It will be an early morning for them, they have to leave at 5:00 AM. The doctors say he should be healed up pretty good by the end of the week. The port will be placed under the skin up by his collar bone, this is needed for him to receive his treatment in NY. Since the port will be under the skin he can swim and take showers. I do not have to flush his lines or do any kind of dressing changes like the one he had before, it had to be flushed daily and the dressing had to be changed 3 times a week. It was so nice this weekend, the only medical supplies I packed was a bag of bandaids and some neosporin.

Mitchel has been feeling so great! He has lots of energy and a great appetite. His hair is really coming in. It is so hard to understand that he has such a terrible thing inside of him when he looks so great. I want to believe that he is completely well. I have prayed for him everyday and will continue to pray for his complete healing.

I want to say a HUGE thank you to the wonderful people at Crown Packaging Lenexa Branch, the company where Mike works, they gave us a wonderful gift certificate to the Great Wolf Lodge where we stayed. We all enjoyed it so much I even got a one hour message, and it was wonderful. I did not think or worry about anything for one hour, what a blessing that was. Again that you all so much!!!!

This week will be starting off slow as Mitchel regains strength from his surgery then Thursday him and I are off to Memphis to have his braces fitted for his legs at St. Jude Hospital. Friday we are going to Mike's parents for a little getaway before Mitchel and I go to NY on Sunday. I keep telling Mike I cannot believe we will be gone for 3 weeks. As soon as we return from NY I am planning on taking the boys and heading for the hills. We will be staying at my parents for the week of Thanksgiving. They live on the most beautiful piece of land out in the middle of nowhere and I cannot wait to get there to just sit on the porch and relax. It will be so different from NY where everyone is on the go.

Thank you all for your continued prayers! We are believing in a miracle for our boy!

Love to all,

Mary

Wednesday, October 26, 2005 8:43 PM CDT

This has been such a long day. I knew when Mitchel got up this morning that he did not feel 100%. We had a few appointments in Tulsa and by 11:30 he was running a fever. I took him to the clinic and they sure enough admitted him into the hospital. Since he just had his new port put in and in the past has had infections they did not want to take any chances in him infecting his new port. Tonight he is feeling much better and does not have a fever. His counts are great so we think he must have a virus, but we won't know for sure until his cultures come back. They started him on antibiotics right away.

Mike stayed with him tonight and we will take turns staying with him depending on when he gets out, hopefully by Friday. We did cancel our trip to St. Jude for tomorrow and will have to reschedule it for later in the month. We are still planning on leaving Sunday for NY his HAMA test came back negative which means he can receive another round of the 3F8 antibody.

I will let you all know how he is doing tomorrow, but for now I am so tired. Please pray for Mike and I to have strength during this trip to the hospital. It takes all of our energy when we have to put him in the hospital. Emotionally it is exhausting.

Love to all,

Mary

Thursday, October 27, 2005 7:54 PM CDT

AHHHHHHH! Home sweet home!!!!

Mitchel miraculously bounced back from whatever he had, he did not run a fever all night and all day today. We came home around 5:00 pm and what a relief to be home.

We sure wanted to travel to St. Jude today but there was not any way that was possible. Tonight Mitchel is running around playing with Michael. They are scaring us with their costumes. Michael is a vampire this year and Mitchel is a scary pumpkin. His costume consists of a mask that he picked out of a pumpkin with a very scary face along with a loud roar to scare everyone. Michael has a black cape, fang teeth and some scary colors to put on his face. We are doing trick or treat early this year since we will be gone on Halloween. Thank goodness for Grandma Bailey who has coordinated a few houses for the boys to go to tomorrow night for their treats.

God has been so faithful to Mike and I and has made sure we have enough encouragement to make it through the tough days. It is through all of you that care so much for us and we appreciate it so much. Thank you all for your continued prayers.

Hope everyone has a great weekend!

Love to all,

Mary

Saturday, October 29, 2005 9:02 PM CDT

Hi everyone,

As you can tell from the new pic's we have been having a great weekend. The boys had so much fun at the carnival and they especially enjoyed getting to go trick-r-treating. How do you spell that word anyway?!

Well tomorrow is the big day, we are leaving around 12:30 and going through Dallas. It is a 7 hour flight to get there. Mitchel has already expressed to us that he is not going, so again we will have to really work with him about going. He knows what is going on there and I don't blame him for not wanting to go. He will be fine once we go. Mike will be coming in on Wednesday and that will make him so happy.

Hope everyone has a great week and we will update you as we can.

Love, Mary

Monday, October 31, 2005 3:49 PM CST

Happy Monday from NY,

Things are going pretty good. We had quite a day yesterday, Mitchel did not seem himself at all. He was very tired and not talking hardly at all and he had many trips to the bathroom which were very unpleasant. When we got to the Ronald McDonald house he got sick and had a slight fever. Since he had diareah all day I called the hospital and they said to bring him in. Luckily we did not have to stay but we did not get back to our room until 2:00. I still had to make the beds and get us ready for the night. We are so tired today. We have been her since 10:00 this morning and we are just now leaving at 5:00 pm.

I hope he starts to feel better, they have given him a 24 hour antibiotic and some medicine for his diareah. Right now he is sound asleep and probably will sleep through the night since they gave him tylenol and dialudid for pain.

Not much of a Halloween for tonight, but I don't think he really cares about much right now, just concentrating on feeling better.

His treatment today went pretty well, his pain was intense but did not last long and no hives today. We are in the morning schedule for his treatment so we have to be here at 8:30, I am sure we will both be in bed early tonight.

Thank you all for your continued prayers, this has been a very difficult time for me. I am totally stressed out and very tired.

Love, Mary

Tuesday, November 1, 2005 7:13 PM CST

Hello everyone,

Today has been much better. Mitchel treatment was in the morning and I think he does better as far as the rest of the day. He continues to have alot of pain with his treatments and today was the worst. His face turned really read and he was screaming give me something for his pain. My heart was so broken watching him feel so much pain. Once the pain is over he usually sleep for about 3 or so hours.

Tonight we made our dinner and now we are playing in the playroom. He is feeling much better tonight. We ended up switching rooms with a family from Greece today and so we had to pack up and move to another floor. The room we have now is much better and the airconditioning works. Believe it or not it has been pretty warm here. I hope the weather turns a little colder soon.

Mike will be coming tomorrow and we cannot wait to see him. Mitchel has been counting down the days for that.

Thank you all for your continued prayers, they are so encouraging to us.

Love to all,

Mary

Wednesday, November 2, 2005 7:21 PM CST

3 treatments down and 7 more to go!

Happy Wednesday everyone,

We are counting down the days of Mitchel's treatments. Todays went pretty well, he did get hives at the end of his treatment, but they went away pretty quickly. They give him medicine for it. He has tested positive for an intestinal infection called C-Diff. He has had it before and it is not any fun. The medicine he has to take can only be taken orally and he hates that. It tastes terrible, but I am proud to say he swallowed his pill tonight and it only took about 15 minutes to get it down. He is slowly learning that taking his medicine that way is so much faster and easier. Today the nurses held him down and squirted the crushed pill mixed with strawberry syrup in while holding his nose. He screamed for about 5 minutes, he was so angry they did that. He did not talked to his nurse the rest of the day. He is learning what he can and can't get away with. The child life lady made Mitchel a special chart and everytime he takes his medicine each day he gets to put a sticker on it, he has to take three a day. The next day if he has 3 stickers on his chart he gets a prize. They have been really good with encouraging him to take his medicine.

Things are slowly settling down here and we are getting a routine down. Daddy will be here tonight and Mitchel is very excited.

I have been reading two great books that have really helped me stay grounded during these difficult days. Somehow they were just the perfect books I needed for this trip. When I purchased them I was not sure what I would get out of them, but they are such an inspiration to keeping me on track. One is called the Ransomed Heart by John Eldridge, it is really good. He also wrote Wild at heart which Mike has read and loved it.

Please say a special prayer for our friend Zachary and his parents. They are going through a very difficult time right now. I am so glad they will be able to take their Make a Wish trip next week to Disney World. I know Zachary is excited. You can leave them an encouraging word on their website at caringbridge.org/pa/ilovezachary.

Have a great day tomorrow,

Mary

Friday, November 4, 2005 8:27 AM CST

Happy Friday,

Hope everyone is having a great week. We are enjoying the sights as much as we can. Yesterday we ventured out to Time Square and took Mitchel to Toysrus. He enjoyed every minute of it, of course he got to pick out a toy. Mike was so amazed at the amount of people that were just walking around. It was impossible to catch a cab there so we had to walk a few blocks to get one. Mitchel and Daddy held out their arms and enventually we were successful in getting a cab.

Mitchel's treatments are going pretty good. The pain has been the same everyday, his face has been swelling a little the last couple of days and he has broke out in hives. After today's treatment he will have 2 days off.

Mike will be leaving on Sunday and our daughter and grandson will be coming on Monday. We cannot wait to see her. Mitchel has been eating steak everynight and corn. He continues to have a pretty healthy appetite, thank goodness.

He also continues to take his medicine for his infection, taking it 3 times a day can wear everyone out. He is so brave having so much to deal with at once. I hope when he grows up he does not remember any of this.

Tomorrow we will be going to Central Park, hopefully the weather will be good. The weather here actually has been pretty perfect. A little cool but not enough for a heavy coat. Mitchel has really enjoyed the weather because he can run around and not get cold.

Please pray for Mike to have safe travels on Sunday and Rachelle to also have safe travels as she comes in on Monday with baby Brendan. Also, please continue to pray for Mitchel's complete healing and strength for all of us.

Love to all,

Mary

Sunday, November 6, 2005 5:02 PM CST

Hi everyone,

Just wanted to let everyone know we have had an awesome weekend. We were sad to see daddy go home, but we will be home before long as well.

I will update you more tomorrow on more specific things about our weekend. Rachelle will be arriving in tomorrow and we cannot wait to see her.

Thanks for checking in on us.

Love,

Mary

Monday, November 7, 2005 1:25 PM CST

Hello,

We just finished Mitchel's treatment for today and he is sleeping away. Thank you all for checking in on us, we appreciate all your kinds words on the website.

Today's treatment went pretty good, he continues to have alot of pain with the 3f8 and today he was holding his breathe a little to try and fight back the pain. When you do not have pain that usually means that the you have built up an resistance to it and you know longer benefit from the treatment. So unfortunately pain is good right now.

When Mike was here was ventured out to Time Square and visited Mitchel's favorite place, Toysrus. He showed daddy all around and the next day we went to Central park and spend most of the day. We are going to visit the Bronx Zoo this week, I heard it was a little bigger than the central park zoo so we will see.

Mitchel continues to be in good spirits and he looks really good. He is usually up and running around in the afternoon after his sleepy drugs wear off. His counts continue to be great and his hair keeps growing in. He now has a full head of hair, it has a little wave to it already.

Yesterday was the New York Marathon run, we went down the block to see all the runners go by. Mitchel said when he gets older he will be running in the race too. He said he will be saying beep beep when he runs. He loves road runner. He then decided to run his own race and he ran down the sidewalk going the other direction. He nows runs everywhere we go, this is really good exercise.

We still do not have his braces yet, but he continues to improve on his heal walking. We will have two physical therapy appointments this week and hopefully we can get his braces from St. Jude since we have not been able to travel to Memphis and pick them up.

Rachelle and Brendan are coming in tonight and we cannot wait to see them. It always helps to have somewhere here with us to keep us company. It can get lonely sometimes, however we have met some wonderful families here and they have been so nice. The Ronald McDonald House always has activities for the children.

We sure miss being at home and cannot wait to see Bartlesville again. Mike and Michael are doing fine, they are taking care of each other. Mitchel wants to know how many more days before we go home, I know it is hard on him to be away for so long.

Please begin praying for CLEAR SCANS, he will have them done next week. I want to know that this treatment is doing some good. Dr. Kushner said we will make our decision about what is next after the scans. He does want Mitchel to continue on with the regular protocol of the 3f8 antibody along with accutane. But we will see about radiation. The treatments will continue on every 3 weeks until Mitchel builds up an resistance to it.

Thank you all for your continued support, we love you!

Also, please remember our friend Zachary who is taking his Make a Wish trip this week to Disney. Pray for safe travels and LOTS OF FUN!!!!!!!!

Mary

Wednesday, November 9, 2005 8:25 AM CST

Happy Wednesday,

We are in clinic this morning and things are going great. Mitchel has been feeling really good. His counts continue to be great and after recovering from his treatments everyday he has lots of energy.

We will not be home until next Friday because of his scans next week.

Hope everyone is having a great day!

Love to all,

Mary

Friday, November 11, 2005 8:49 AM CST

Happy Friday,

It is getting cold here, I guess I should not have sent my coat home with Mike. I learned my lesson, it was so nice here for so long I did not think it would ever get cold, but now I know. At least Mitchel has his coat.

Today is the last day of his treatment and I am so glad. Yesterday the pain was very intense and he held on tight to the bed rail and screamed. He uses cold and hot packs along with oxygen air blowing in his face to keep him comfortable. It wears me out just watching him suffer so much.

We are keeping busy with Rachelle and Breandan being here. It will be sad to see them leave tomorrow. We have enjoyed them so much.

I am staying strong in my faith and it has carried me through yet another two weeks of Mitchel's treatment. Thank you all for your continued prayers.

I have limited time on the computer so I must say goodbye for now.

Love to all,

Mary

Sunday, November 13, 2005 8:28 PM CST

Hi everyone,

Hope you are having a great weekend. We have been very busy this weekend. Last night we took a boat ride around the Hudson River, it was very nice. Finally got to see the Statue of Libert, she was beautiful. The view at night with all the lights of the city was great. Mitchel loved it all.

We have a slow week coming up and so I hope we have time to sight see even more.

Mitchel will have scans this week which include a Cat Scan and a MIBG, these two scans will determine how much if any cancer is still remaining in his body. They will also perform a bone marrow biopsy on Friday.

PRAYER WARRIORS NEEDED, PLEASE TAKE ALL PRAYERS CONCERNING HIS TESTS THIS WEEK TO THE ALMIGHTY THRONE. WE NEED TO HAVE CLEAR, CLEAR, CLEAR SCANS!!!!!!!

Thank you all for your continued support, we have made it through so much with all your encouragement.

Many of you have sent me verses to keep me encouraged and I appreciate them so much.

Please pray for our friend Zachary, he had to return early from his make a wish trip, he was experiencing too much pain. His parents Betty Jo and Dave also need alot of encouragement right now. Their website is caringbridge.org/pa/ilovezachary.

Love to all,

Mary

Monday, November 14, 2005 6:52 PM CST

Happy Monday,

Mitchel has been feeling great, today he was so glad to not have any appointments. He was very interested in knowing all about mine though, I had a flu shot today. He kept asking me all about my owie, he was so concerned for me. What a sweetheart he is.

I received a phone call today from my good friend Betty Jo, Zachary's mom, and the news was not good. Dr. Santana informed them today that Zachary has approximately two weeks to be with us on earth. My heart is so filled with sadness, I cannot imagine what Betty Jo and Dave are going through tonight. Zachary is experiencing alot of pain, they are keeping him comfortable with medication. Please say a special prayer for their whole family tonight. You can give them encouragement on their website at caringbridge.org/pa/ilovezachary. I know they would love to hear from you all.

I will update you later about how our week is going later, my thoughts are elsewhere tonight.

Love to all,

Mary

Thursday, November 17, 2005 8:19 AM CST

Hello from NY,

We are still here, but leaving tomorrow. This morning Mitchel had his CAT Scan and will be getting his MIBG injection this afternoon. The MIBG and bone marrow biopsy is tomorrow morning and our plane leaves at 4:00.

This week we have had alot of time to go sightseeing all around NY. We visited the American Museum of Natural History, which Mitchel loved, then we went on a boat ride around the Hudson River. We also visited Ground Zero and Greenwich village. Mitchel loves going to Central Park so we have walked through it everyday. This has been a long three weeks and we are so anxious to be going home.

Mitchel continues to feel great and has lots of energy. He has met alot of new friends here and plays everynight with them all. He was in a talent show last night with his two friends, he was the assistant for a magic show. I have pictures I will post when I get home.

Thank you all for your continued prayers and encouraging words. This is such a hard journey, but with all your love we make it through each and everyday with alot of inspiration to keep going. It is not easy to be away from Mike for so long, we miss him so much. We continue to trust in our faith and know that God keeps giving us all of our daily strength.

Love,

Mary

Saturday, November 19, 2005 10:00 AM CST

We are home!!!!!!

GOOD NEWS! GOOD NEWS! GOOD NEWS! GOOD NEWS!

Mitchel's scans came back and his cancer is almost gone!!!!!!! I know I don't like the word almost gone either but let me explain. His cat scan is completely CLEAR and his MIBG has a slight uptake in the femur bones so slight that Dr. Kushner says it may even be CLEAR! The radiologist has to make the final reading but it looked clear to me. He pulled up the one from October 8 and you could definitely see a slight uptake but now you cannot. The area on his left collar bone is gone and he said his hips are completely CLEAR! The bone marrow results are not in yet, but Dr. Kushner did say that it may take a little longer to clear up his bone marrow. Last time he had a small amount in his left front hip. His VMA, HVA levels have dropped as well, these are tumor markers in the urine. Before his VMA was 17 and now it has dropped to 13, normal range is below 9. His HVA before was 32 and now it is 22, normal range is below 19.

Dr. Kushner was thrilled about the scan results and said the treatment is working!!!!!!! We are so excited as you can imagine! We have prayed for so long for this. Thank you JESUS!!!!!!

We arrived last night and I cannot tell what a long day yesterday was for us. As we were leaving the clinic to go down for his scan they told me Dr. Kushner wanted to meet with us after the bone marrow biopsy. As you can imagine those two hours waiting to see the doctor seemed like 8. Mitchel and I were worn out, I prayed all day for God just to carry us home, and he did just that.

So where do we go from here? We will return back to NY in two weeks to start on the regular dose of the 3F8. Mitchel will receive as many rounds as possible before his body build up an immune to it. So this means alot of trips to NY, but we will do whatever we need to as anyone would.

Please continue to pray for our little friend Zachary who we love so much. His family is gathering together down in Memphis to support each other during this difficult time. You can read about his journey at caringbridge.org/pa/ilovezachary.

Hope everyone has a great weekend!

Love to all,

Mary

PS. Just want to say hi to all of our new friends that might be reading this from NY, as well as our friends from St. Jude, we miss you all! Hope you all have a great Thanksgiving!!!!

Tuesday, November 22, 2005 7:23 PM CST

MITCHEL'S BONE MARROW IS CLEAR!!!!!!!!!!!!

We just heard from Dr. Kushner and I cannot tell you how excited we are!

I cannot even type I am so excited!

Praise God for all his mercy and healing power!

We hope everyone has a Happy Thanksgiving!

We have so much to be thankful for!

Love to all,

Mary

Friday, November 25, 2005 4:11 PM CST

I received a call from Betty Jo last night around 10:00 and Zachary earned his angel wings last night around 7:15. He was resting peacefully in his mothers arms and his daddy was right beside him. Zachary is resting in the arms of Jesus right now and playing with all the other angels. We will always cherish our memories with Zachary and his wonderful family that we had over the last year. Please continue to pray for Betty Jo and Dave, they have some really tough days ahead of them. Caringbridge.org/pa/ilovezachary.

We are at my parents until Sunday. Mitchel is feeling great and having a wonderful time with all his cousins.

Love to all,

Mary

Monday, November 28, 2005 10:15 AM CST

Happy Monday,

We returned home yesterday afternoon and I think the wind pushed us all the way!

We had a great time with all of our family. Mitchel and Michael got to spend so much time with their cousins they haven't seen in years.

We will be getting ready to travel on Sunday this week. We are all going and be gone for two weeks. Michael is very excited to see everything we have been telling him about. We are all excited to see the New York at Christmas time. I know the lights and decorations will be beautiful.

Mitchel has been feeling so great. His nose is a little stuffy this morning but he has been playing full force.

Please continue to thank God for Mitchel's body being clear of cancer. We are praying for the cancer to stay away and never ever return.

Also, please remember Betty Jo and Dave as they will be having Zachary's memorial services this week.

Love to all,

Mary

Wednesday, November 30, 2005 11:25 AM CST

Hello to all,

As you can see from the new pictures Mitchel is doing so well. He has so much energy and we thank God each day for his miracle of clear scans.

We have been so busy these last few days, my brother was here visiting with his family of 4 children from San Diego and we had so much fun with them all. Mitchel and Michael really got to know their cousins and they got to see how well Mitchel was doing in person. All my nephews and nieces have been faithfully praying for Mitchel. I know God hears so many wonderful prayers from children, they are so cute!

We heard from Dr. Kushner's office this morning and Mitchel has tested negative for HAMA so we will be leaving for sure on Sunday for another two weeks of treatment. Mike and Michael will only be staying for the first week. I honestly am not looking forward to this trip. We have been having so much fun here at home. I guess we will have to make the best of it and have fun there too!

Mitchel is showing signs of a cold coming on so I will be keeping him in for the next few days. He is still running around though not letting that slow him down.

Mike and I are making our plans for the trip to DisneyLand over Christmas break. The boys are very excited to see Mickey Mouse again. We will be leaving Christmas day and return on New Years day. My mother lives in San Diego which is about 3 hours from Disney Land, so we will be staying with her for a few days.

I just want to say a special thank you to TISHA MITCHELL who donated enough AA miles for two round trip tickets to NY, we appreciate it so much. Also, all the people from Mike's work, CROWN PACKAGING, that participated in the fundraiser they had several months ago, thank you all again, we have been able to make several trips to NY for Mitchel to receive his treatment and not worry about how we are going to pay for it. Thank you to all the people who have donated funds to our Church on our behalf to help cover expenses for Mitchel's treatment. God continues to be faithful, GOD IS GOOD ALL THE TIME!

We love each of you and ask that you continue to praise God with us that Mitchel is feeling so great.

Love to all,

Mary

Friday, December 2, 2005 9:52 AM CST

TGIF!

The countdown to NY has officially begun. We will be heading out early Sunday morning. I am so happy that Mike and Michael are going too, I know Mitchel is thrilled. He cried the whole way through the airport last time when he had to say goodbye to daddy and Michael. It just isn't fair he kept saying. This time he is excited to show his big brother around all the places he has already been to. He wants to take him to the musuem right when we get there.

Mitchel is still fighting a cold and so he has had to stay in all week. No fever though, thank goodness.

Mike and I finally got out last night for a much needed date night. We saw the movie Walk the Line. It was really good, we have always been fans of Johnny Cash.
We actually got to have dinner out and a movie, wow that was exciting. Thanks honey!

Mike and I continue to put our trust in God and thank him everyday for all the wonderful blessings we have. Our marriage has been tested alot during this journey and we have truly seen what God can do with two people that are willing to work hard and follow his guidance. A happy marriage is a wonderful blessing from God.

Thank you all for your continued prayers, we are so blessed and encouraged by them.

Love to all,

Mary

Monday, December 5, 2005 4:20 PM CST

Hello from NY,

We made it here safe and sound. Our flight was only delayed 30 minutes yesterday.

Mitchel's treatment was very hard today. The pain was intense and it lasted longer than any other time he has had the treatment. This is a different protocal and it seems to cause more pain. He needed three rescues this time with pain medicine instead of his usual two.

It is very cold here and we have to walk everywhere so that makes it alot colder. We all cannot wait to return already after just one day.

Well I have to run, please pray for us this week as we have to watch our baby suffer so much.

Love to all,

Mary

Tuesday, December 6, 2005 1:54 PM CST

Thank you all for your prayers yesterday, it was a tough day. Today was better though. Mitchel's pain did not last as long and was not as intense. Last night the boys got to make gingerbread houses and they loved it. Tonight they will be making christmas stockings, the RMH tries to keep all the children busy and they do a great job.

It snowed here last night but not very much. Michael is sure dissappointed that there doesn't seem to be any grass anywhere to make a snowman. We have not been able to visit central park yet, but he cannot wait to go. He wants to know why we have to walk everywhere when it is so cold. He is learning all about NY, I feel certain he is a true Oklahoman, he appreciates his home state all the more.

Not much else to report, Dr. Kushner came by today and checked in with Mitchel. He is still very pleased with the outcome of all the tests so far. He is very encouraged to see Mitchel feeling so great.

The boys are playing non stop, they keep each other entertained very well. They each got a present from the organization that was volunterring last night. They feel like Christmas has begun already. As we walk down the street to the hospital every morning we pass by a christmas tree stand and they trees smell so awesome! We are hoping to visit alot of places this weekend.

Thank you again for all your prayers! Everyday is a new day and we never know what to expect from Mitchel's treatment.

Love to all,

Mary

Wednesday, December 7, 2005 7:22 PM CST

Hello everyone,

We are hanging in there, the days seem to be going by pretty fast. We have been keeping the boys busy everyday. Last night we went to ToysUS so Michael could experience the whole huge toy store thing and he was really happy he got to see it. He walked in and just starred at everything and said "I can't believe it". Of course the boys got to pick out a toy and then we ventured over to the Candyland department where we each picked out some candy.

Tonight the boys met Aliana Lohan, younger sister to Lindsay Lohan and her mother. They were here visiting all the children. Michael really enjoyed meeting her and thought she was really pretty. She looks so much like her older sister, they could be twins. Mitchel did not care a bit, he just wanted to keep playing in the playroom. I got a autographed picture for him so he can know someday when he gets older that he got to meet her.

Today's treatment went well, Mike and I were wondering if he was going to have pain at all, but at the end he did. It was not intense and it did not last very long. The boys have been playing together all day. Mitchel did not even take a nap after having his dialadid. He will probably crash tonight, he has got to be tired.

Well we are planning on a big day tomorrow, visiting the National Christmas tree at Rockefellar Center and watching all the ice skaters.

Thanks for checking in on us we love you all so much!

Mary

Friday, December 9, 2005 5:25 PM CST

Happy Friday,

We have made it through yet another week of treatments, Yeah! It will be nice to sleep in tomorrow and be able to have the whole day with the kids.

We took the boys to the American Museum of American History and that was about it this afternoon. Michael was not to interested in anything, just that he wanted to go to Central Park. I hope we can make it over there tomorrow. It snowed most of the night and this morning, the snow flakes were so big. It was so beautiful walking to the hospital, the boys walked the whole way making snow balls and throwing them at each other.

Mitchel's treatment today was about the same as yesterday. Alot less pain and it did not come until the end of the treatment. Michael has been entertained in the playroom all week. They have all kinds of activities for the kids, yesterday a man came from the NY Yankees team and gave out baseballs, the boys were very excited about getting a baseball, but that was about it.

Well the party is starting for tonight, they are serving dinner and giving out gifts for the kids. We have had a party everynight with presents for the kids. I am not sure how we will get all these presents home, but I am sure we will manage.

Love to all,

Mary

Monday, December 12, 2005 3:11 PM CST

Hello everyone,

Just wanted to give you a quick update. Daddy and Michael made it home safe and sound. Mitchel and I are flying solo this week, so far so good. The RMH has had the most wonderful parties everynight and that has kept us all pretty busy.

We received a call from Betty Jo, Zachary's mom, and she was coming to the city with two of her friends. We were so excited to hear she was coming to visit us. They came to the RMH and then we all went to dinner. Mitchel and Betty Jo really had a good time, Mitchel wanted to sit by her at dinner and they watched his Looney Tunes together. I cannot tell you all how good it was to see her again. Thank you Betty Jo for a wonderful time.

Not much else to report, we are still at the clinic, Mitchel finished his treatment and is doing fine but wanted to hang out in the playroom before leaving. We are here until Monday the 19th. We are both hoping the time goes by really, really fast.

Love to all,

Mary

Tuesday, December 13, 2005 12:03 AM CST

Happy Tuesday,

Hope everyone is having a great day. Mitchel is finished with his treatment today and we are in the playroom just taking our time returning back the RMH. He is feeling good and his treatment went well today. His pain level was about the same and it did not last very long. He continues to play and feel good enough to play the rest of the day.

We are excited to be going to the Lion King play tomorrow night, there are four of us moms going and we all have boys, it will be interesting and alot of fun. The hospital gives out tickets to the different plays around town that the kids would like. I will try and get tickets to the Rockets before we leave, I think Mitchel would enjoy their Christmas musical. We have made alot of friends here and they have been such a blessing to us. Alot of moms are here by themselves just like me and we support each other alot.

We continue to count down the days to return home. It will be on Monday the 19 in the afternono. Mitchel will have another bone marrow biopsy in the morning before leaving. He will have all of this scans again when we return in January. We know they will be completely clear again!!!!!! Thank you God, you are an awesome God!!!

Thank you all for your continued support we love you all.

Mary

Thursday, December 15, 2005 12:36 AM CST

My my how things change....

We are inpatient as of last night, I know you all are just as surprised as I am but Mitchel got a fever yesterday and they admitted him last night. None of us mothers got to go last night to the Lion King, the other children were not feeling well either. We were so sad to not be able to go, but we all know with this journey it could take a turn in another direction at any moment.

We arrived at urgent care last night around 8:30 pm and finally got into our room around 4:00 am. It has been a long night. Mithel has tested positive for a gram negative infection. They have already started him on antibiotics and his is feeling better. He did not have a fever this morning which was good news, he was able to continue on with his 3F8 treatment today and again tomorrow for his last day for this cycle. Mitchel got a fever yesterday in clinic and so I wasn't too surprised that he ended up with another fever last night and ended up here as inpatient. They will need to get three negatives cultures before we can leave the hospital, which is pushing is being able to leave on Monday.

Please pray for a speedy recovery and that we will be able to be on that plane Monday afternoon. We am a little anxious about leaving later in the week considering all the holiday traveling starting up. The doctors have mentioned that they may need to remove his port which he has only had for a month. It may be infected and this would also delay our coming home. All is up in the air until they receive the blood cultures in the next few days.

I need alot of prayer to keep me going right now, the last thing I needed was this to happen.

I will keep you all informed as to how Mitchel is feeling, so far today he is doing good.

Love to all,

Mary

Saturday, December 17, 2005 8:07 PM CST

Anwered Prayers!

Thank you all for you prayers, Mitchel was released from the hospital Friday afternoon. He will stay on antibiotics until Christmas day. He is feeling great and has all his energy back.

We will start packing tomorrow and he is excited to start the process of going home. Daddy and Michael are really missing us and cannot wait for us to return on Monday.

Well we just wanted to share the great news with you all, thank you so much for your prayers and kind words.

Love, Mary

Monday, December 19, 2005 6:12 AM CST

Good Morning,

It is 7:00 am and Mitchel and I are at the clinic getting ready for his bone marrow procedure this morning. Please pray for us to have safe travels today.

Our plane leaves this afternoon at 3:20, we cannot wait to get home again.

Love to all,

Mary

Tuesday, December 20, 2005 11:22 AM CST

Home Again!!!!

It feels so great to be home again. The first thing I did was plug in the Christmas tree, I just love looking at it. The boys helped decorate it so you can imagine how cute it looks. Mitchel was so happy to see his daddy, he was there to pick us up. Michael stayed home with sister and they were excited to see us when we came in the door.

These last two weeks in NY was hard on both of us, we miss home so much. What choice do we have, we have to go. Constantly praying and trusting that God will carry us through these rough days was the only thing that got me through it. We appreciate all the extra prayers from you all, thank you so much.

Mitchel was not wanting to get his bone marrow this time, we had a long talk the night before. He was asking me why do I have to have all these things done, my heart sunk and I honestly cound not come up with a good explanation. He kept asking why. I finally explained to him that he has boo boos in his stomach and the medicine is making them all better. We call the 3F8 treatment his ouchie medicine, because it causes so much pain in his stomach. He wanted to know why he has to take his ouchie medicine. As you can imagine I went to bed heartbroken that night. He has two bumps on his back that stick out right above those cute little buns, it is from having so many bone marrow biopsys done and the scare tissue is building up. I think he is on number 10 or so. When he started going to NY for his treatment they did biopsys on the front and back, so his front hips are so soar.

I feel like Mitchel when I pray to God asking him the same questions, why is this happening to all the innocent children who have done nothing to deserve this. He has given me peace about Mitchel and all he has to endure. I trust in God and know that he has a plan for Mitchel, he continues to carry us through it all.

I met a wonderful lady on the airplane coming home from St. Louis last night, Hi Pat if you are reading this. Thank you so much for sharing your story with me. Your kindness truly encouraged me to keep going and it reminded me that tomorrow will be a better day.

Hope you all have a great day and thanks for caring so much about us.

Love to all,

Mary

Thursday, December 22, 2005 11:56 AM CST

Happy Thursday indeed!

We just heard from the hospital and Mitchel's bone marrow is once again CLEAR OF CANCER!!!!!!!!!!!!!!!!!!!!!!!!!!

I cannot tell you how happy I am right now. All those days in NY that I just wanted to leave and come home, this news makes it all worth it. Mitchel is feeling so good and we now know that the treatment there is working without any doubt.

Alot of people want to know what it next for Mitchel. So I will try and explain it as best I can. He will continue on with the 3F8 until he reaches HAMA. When his blood tests positive for HAMA that means his body has built up an immune to the 3F8 and there would be no point in giving it to him. At that point you wait until the HAMA test comes back negative before starting on the treatment again. The doctors really want each patient to receive at least 4 treatments before they test positive for HAMA, of course each patient is different and some of them have tested positive after the first round. Mitchel will have his blood drawn next week while we are visiting my mother in San Diego at the Children's hospital of San Diego, we will overnight his blood to NY to be tested and will know within a week if he is positive or negative for HAMA. If the blood tests negative then we again return to NY for another round of 3F8, we continue on this schedule every three weeks until the fourth round then we go to every 8 weeks. This will be wonderful to only have to return to NY every 8 weeks. Any way for now I am glad the treatment is working.

Sloan Kettering Hospital in NY has several new protocals coming out next month, they are constantly coming out with something new to try against Neuoblastoma. They have a vaccine coming out also for relapse Neuoblastoma, I do not know that much about it but it sure sounds promising. We feel confindent that we are in the best place for treating Neuroblastoma. We are forever grateful that St. Jude Hospital treated him at the beginning, Mitchel would not be here today if it wasn't for them, Dr. Santana and his staff are amazing. Thank you Dr. Santana for sending Mitchel on to NY for the 3F8 treatment it has given us hope that he will one day be all grown up and live out his dreams. He still asks about you and Miss Julie, you all are the best!

Well sorry for such a long journal entry today. I wanted to share with you the great news!

Thank you all for your continued prayers and encouragement. We know God has a wonderful plan for Mitchel!!!!!

Love to all,

Mary

Tuesday, December 27, 2005 9:10 PM CST

Where do I begin?

We have a wonderful Christmas, since we were traveling on Christmas day we decided to have our Christmas morning on Saturday. The boys were so delighted to see that Santa did not forget them. Everything was there that they had asked for. Thank you to all the folks at Crown Packaging St. Louis Branch for the gift cards to ToysrUs. We are so humbled for all you kindness. Mike and I are so looking forward to our night out for a wonderful dinner at Sterlings Grille.

We woke up Christmas morning bright and early to head out for our wonderful trip to California. We made it about 5 1/2 hours out and Mitchel started to get sick. Mike and I decided that we should cancel our trip and get Mitchel home and make sure it was not something like another infection. We made it home around 7:00 pm and by 8:00 I was on the phone with Dr. Kirkpatrick, he suggested we watch him and try to keep the vomitting under control, he did not have a fever at that point. By 7:00 the next morning his temperature was 104 and we immediately took him to St. Francis. Dr. Kirkpatrick told us to go straight to the 2nd floor to be admitted. I cannot tell you how dissapointed the boys were about not going to see Mickey. They drew blood for cultures and after 24 hours nothing has grown on them indicating another line infection. It turns out that he has a intestinal infection and it will have to run its course. He was discharged late this afternoon and so far he has been feeling much better. We are all trying to stay positive telling ourselves the trip has not been cancelled but just postponed. We will try and go again after we return from NY. It is situations like these that can really push you over the edge, we just want to be a normal family and not have to spend so much time in the hospital. God continues to give us strength and we continue to trust in him for all our needs.

Please pray that Mitchel will continue to heal quickly and enjoy the rest of his time at home before going back to NY. We love you all and appreciate your prayers!

Hanging in there,

Mary

Wednesday, December 28, 2005 6:15 PM CST

Hello everyone,

What a beautiful day we had today. Mitchel is feeling much better today. He has only been sick once this morning and I can tell a big difference in his energy level. He has been playing with Michael all afternoon. Seeing them play together has to be the most wonderful thing in the world, my boys growing up together. I love them so much!

Today was so nice for me, I just worked around the house taking down the decorations and unpacking everyone's suitcase. I love being at home and I think I truly needed this extra time at home. Being home as a family means so much to me. I will be going to NY for the first time with just Mitchel, we will be there for about 2 weeks. The tickets are just getting too expensive for us all to go and we know that we will have to make several trips this next year. I have been able to be around alot of mothers that are there by themselves and even though I would not choose to be there alone it does give me strength to see them go through it alone. They are so strong!

As we approach a new year we find ourselves looking back and are amazed at all we went through. What an awesome God we serve, he carried us and gave us the strength to make it through our hardest time in our lives. Mike and I are encouraged by all your prayers and comforting words, it is not easy some days to stay positive, but somehow we manage to.

Mitchel has come a long way and he continues to get better each day.

Love to all,

Mary

Friday, December 30, 2005 1:54 PM CST

Happy Friday,

We just returned from Mitchel's Dr. appointment and he ordered a few more nights of fluid for Mitchel, just until his diarrea and vomiting stop. His ANC has dropped down to 700, I am sure this is his system trying to fight off the bug. After leaving the clinic I was so glad to hear that he wanted a hamburger from Sonic just like he always orders one, hamburger plain with cheese. He ate most if it and about 5 french fries. He has kept it down so far, I think he is feeling much better today. When we arrived back home they went over to our wonderful neighbors and played soccer in their backyard. The boys just love them so much. We could not have asked for better neighbors.

I spoke with my mother yesterday and told her it would probably be a while before we could make it to San Diego so we would mail her presents. I feel really bad that we had to cancel our trip, I know she was looking forward to seeing us all. However, she told me that she got the same stomach virus and has been sick all week. We would not have been able to stay with her anyway, so things have worked out for the best it seems.

Mitchel and I will be leaving next Sunday, Jan 8, returning to NY. I spoke with someone at the Ronald McDonald House and they told me that we would be lucky to get a room this time. They are renovating the house and they have to move everyone from the first two top floors down so that would not leave any room for people coming in for a short visit. I am not sure where we will stay at this point but it looks like a hotel somewhere around there, it sounds like this trip will be very interesting. Hotels in NY are so expensive, hopefully the hospital will pay for hit.

Anyway I just got a call from the clinic and Mitchel has tested positive for Rotavirus which causes extreme diarrea, and it is super contagious, there isn't any medication for it you just have to let it runs it course. At least we have identified the source, Thank goodness!

Well we want to wish everyone a HAPPY NEW YEAR!!!!!!

Love to all,

Mary

Monday, January 2, 2006 12:19 AM CST

Happy New Year!

Thank you all so much for your encouraging words, they have been such a blessing to us all.

Mitchel started feeling better in Saturday and he is back full force. Unfortunately I cannot say the same for me, I have been sick all weekend with the same thing Mitchel had. It is horrible, but today I am starting to feel a little better. My poor husband has been taking care of us all.

We just keep pressing on, with God's strength and power. During these difficult times it gives us the perfect opportunity to strengthen our faith and we do that through alot of prayer. God is good, All the time!

We received an e-mail from a St. Jude family we met last year and they just received the news that their son has relapsed with neuroblastoma, his name is Brent Nason and he is 10 years old. Please pray for his complete healing and that God will give the whole family comfort right now during this difficult time.

Thank you for all your prayers, please continue to pray for Mitchel continued healing. I have not told him yet that we have to return to NY, especially that daddy is not coming this time. Please pray for his little heart, I know it will be broken when he finds out.

Love,

Mary

Tuesday, January 3, 2006 9:52 AM CST

Hello everyone,

Thank you all so much for checking in on me, I am feeling much better. My energy level is slowly getting back to normal, I will be taking it easy today.

The boys and I are going to spend the whole day just playing, they love it when I put everything aside and focus on them. They also love it when I let them plan the afternoon, believe me they do not leave anything out. They come up with the cutiest ideas of how to spend the day. One of their favorite games is with a two week old balloon that we hit back and forth in the living room, whoever lets it hit the floor first looses. So much for all those other toys in their toy box that cost more then 2 cents. Hopefully the weather will warm up a bit and we can all go outside, I know I could use some fresh air today.

Mitchel is actually feeling so great I am the one who is lagging behind. My immune system has been taking a hit for quite some time, last year Mike was the one who got so sick, we were in Memphis. I felt so bad for him he had to go and stay in a hotel for a few nights until he got better. Mitchel was in the hospital and Mike had to stay away until he was completely over his illness. I have felt so much pressure building up about going back to NY, I have continued to pray that God would replace these feelings with positive ones and let him take all the pressure off of my shoulders.

Our church family is making sure we are taken care of this week, we are being served dinner tonight and tomorrow night. I cannot tell you how much this helps us out. Thank you all so much!! We love and appreciate you all so much.

Well I better go and see what the boys have planned for me, he he! I love it!

Have a wonderful day!

Mary

Wednesday, January 4, 2006 8:59 AM CST

It's official we are traveling back to NY on Sunday, Mitchel is HAMA negative and can continue on with his treatment. We are so thankful that God led us to NY for this treatment, and has provided us a way for us to travel back and forth each time we have to go.

There have been alot of people involved in supporting us through finances and so many prayers we just want to thank you all so much. None of this could have been possible without you. Yesterday we received a note from St. Jude with two St. Jude lime green bracelets inside, one was Mitchels size, the note was an acknowledgement that Crown Packaging-St. Louis had made a donation in tribute to Mitchel. Mitchel loves his bracelet it says GIVE THANKS on it. Thank you all so much for thinking of such a wonderful place, St. Jude Hospital.

Yesterday the boys decided they wanted food from McDonalds and take it to the park. Thanks again to Crown Packaging St. Louis for the McDonalds gift cards the boys are so excited to use them. Anyway we had a great time at the park, it felt good to get out of the house for a little while. Deanna brought us a wonderful dinner last night, thank you guys so much, you are awesome! We are thrilled that Joni will be bringing us dinner tonight, it is such a blessing to have so many people that care about us.

Mitchel is feeling great, we played all day yesterday and had a great time. The boys have been so caring for me, asking me if I feel better, they are so cute. Michael wanted to make me a sandwich yesterday, he said a crabby patty. What a guy!

Have a blessed day!

Love, Mary

Thursday, January 5, 2006 9:51 AM CST

This is the day the Lord has made I will rejoice and be glad in it!

I got up thinking about this song so many times I thought I would share it with you all. It is an excellent way to start your day.

Michael started back to school today, he was excited about it but I think Mitchel was a little dissappointed. They have enjoyed each others company all week, it has been great seeing them play together. Yesterday they both got hair cuts, it has been over a year since Mitchel has had one. His hair was really getting long on the sides and in the back. They both needed new tennis shoes so we ended up at the mall. I was so surprised that they wanted to get matching shoes, usually they want something different.

This had been a very difficult week for me, I have been through some tough moments trying to sort through alot of emotions. I cannot explain where they come from, but considering what I have been through it doesn't surprise me. I feel much better today, God has given me peace. Thank you all for your continued prayers.

Yesterday Mitchel started on his GMCSF injections again, he needs these for his treatments in NY. He receives one each day for 17 days. We usually have a little port put in his arm but I did not have any left so I had to just stick him with a needle. I have not decided yet if I will continue doing this or have a arm port put in when we arrive in NY. Alot of other parents just stick them everyday and they say the kids get used to it, so we will see how it goes. I am sure Mitchel will let me know what he wants.

Prayer request:

1. Mitchel will continue to be cancer free forever
2. Strength for our family during the 2 weeks Mitchel and
I are away, it is not easy being separated so long.
3. God will continue to give me peace about where we are
staying in NY, as of right now we do not have a room at
the RMH and we are 10th on the waiting list.

WE love you all so much! Thank you for checking in on us!

Mary

Friday, January 6, 2006 9:42 AM CST

Answered prayers!

I just got off the phone with the RMH in NY and they have a room for us!!!! The first thing that flew out of my mouth was praise God! She probably thinks I am a nut, but she knows that I have been praying that a room would come available for us.

Things are going great here, Mitchel is feeling better. I have been hinting around about returning to NY and he first said he wasn't going, but I think he is accepting it. I told him we would go to the zoo and gift shop to find him a new hat. He has been wanting a new panda bear hat, he has one from the Memphis Zoo that is getting too small. It is his favorite hat. I have also been reminding him about seeing his old friends again and he is getting excited about that.

The weather report already has a note to check for flight delays on Sunday into NY, they are expecting some rain, snow and sleet. We will definetely be taking our snow boots.

Prayer request:

1. Mitchel will continue to be cancer free.
2. Safe travels Sunday as we travel to NY
3. Strength for our family as we are apart from each other.

Have a wonderful weekend!

Love to all,

Mary

Monday, January 9, 2006 9:32 AM CST

Hello from NYC,

We arrived safe and sound, unfortunetly my luggage decided to stay in St. Louis for a while. They are suppose to deliver it this morning. Thank goodnes Mitchel's bag arrived with us and we had a few things to get ready with this morning.

Trying to get Mitchel in the van yesterday morning to leave for the airport was horrible. He was kicking and screaming the whole way, telling me please don't make me go mommy. Mike and I felt so bad, it was a very difficult time. Once we got on our way he was fine. I know it is hard for him to leave his home and his brother behind.

We are on the afternoon schedule so treatment will not get started until around 1:00. Hopefully we will be on the morning schedule next week, Mitchel seems to do alot better with morning treatment.

The weather here is not much colder than home, so hopefully we will have a chance to get out some and go to central park. Mitchel told me that he wants to visit the Museum of Natural History again, he loves that place.

Thank you all for your continued prayers, we appreciate you all so much.

Love to all,

Mary

Tuesday, January 10, 2006 1:47 PM CST

Hello everyone,

My luggage has arrived, thank goodness!!!!

AA delivered it around 5:30 yesterday evening. If felt so good to have my things again. This is not the easiest city to go shopping in and just the thought of having to do that can wear you out. I was getting a little stressed, but it is all better now.

Mitchel's treatment is going well, we are on the afternoon shift this week so we arrive and start treatment around noon everyday. The pain has been about the same, today was a little more intense, but he responds well to the pain medication and it makes the pain part not last so long. He has not been getting hives this time as of yet.

The weather here is not too cold, so we are hoping to get out a little more than last time. Mitchel has several places he wants to visit while we are here.

I have looked at the calendar and thank goodness I will not be here for my birthday. What a blessing that is, you cannot imagine just knowing that makes me so happy. I am hoping my husband is planning a fun getaway for the weekend of my birthday. Hint Hint!!!!

Well Mitchel is ready to go so I will update you all later on how our week is going.

Love to all,

Mary

Thursday, January 12, 2006 10:51 AM CST

Hi everyone,

We are getting ready for today's treatment in a few minutes and thought I would update everyone. Mitchel has been feeling so good. His treatment yesterday was a little harder than usual, he needed 3 rescues instead of his usual 2. This is given with dialudid, a pain medication and it relaxes him through the pain, he was just having a hard time settling down and his heart rate was staying up there. But with a little time he settled down and went right to sleep. He was up and playing last night with all the kids just like normal.

I spoke with Dr. Kushner on Monday and he suggested taking Mitchel's port out when we return home. I was so glad to hear this, he has had so many infections with his line and now his port. He will have a IV put in his arm for any future treatments. I asked the doctor what happens when he gets a fever without a port and he said nothing. You just let the fever run its course and give him tylenol. He said you don't even have to call the hospital and have cultures drawn because there would be not concern of any port or line being infected. One more step to getting back to a normal life. Yipee!!!!! I know he will not be excited about having an IV all week for treatment next time but I think ultimately he will get used to the idea of not having a port and love it.

Dr. Kushner was very encouraging about Mitchel attending school when he gets back home. I spoke with the school before coming here this time and they are still holding his spot in the morning class. Mitchel is telling everyone that he will be starting school when he gets back home, he is very excited. I know I will be shedding some major tears his first day of school, honestly there were days when I wondered if he would ever have to opportunity to go to school. This is so exciting!

Well we are getting ready to start his treatment so I better run.

Thank you all for your continued prayers, we are so humbled by your love and encouraging words.

Prayers request:

1. Mitchel will continue to be cancer free.
2. This weeks treatment will continue to go smoothly and the 3F8 treatment will continue to work.
3. Mike and Michael at home as we are away.

Love to all,

Mary

Friday, January 13, 2006 10:44 AM CST

Happy Friday everyone,

Thank goodness this is the last day for this week's treatment. Mitchel's treatment yesterday went pretty good, still having pain though. Pain is a good sign for this treatment because it means it is working so we want a little pain, just not too much.

We really don't have alot planned for this weekend, I think tomorrow some of us are going to the movies with the kids and a little shopping. Sunday we will stay close to the RMH, we will be collecting urine for 24 hours for Mitchel's VMA, HMA urine tumor marker test. The last time the levels were slighly elevated so this time we are believing they will be in normal range.

I hope you all enjoy the new song that was put on the Mitchel's website, thank you everyone who helped me get this to work. I have wanted a song on there for a while but did not know how to do it. The name of the group is Casting Crowns and they have an awesome CD, I listen to it when Mithcel is sleeping after his treatment, it is very encouraging to me.

Thank you all for your continued prayers. Hope everyone has a blessed day!

Love to all,

Mary

Monday, January 16, 2006 8:14 AM CST

Good Morning everyone,

How are you all doing? We are up bright and early this morning, Mitchel is on the morning treatment this week. We had a pretty slow weekend not much to report.

Friday night we went out for dinner with some friends, we made it to TGIF and had a great meal. Then it was down to Grand Central Station and we were amazed at how beautiful it is. We made our way down to McDonalds and the kids ate. Mitchel ate again, he has been eating so well these days. Then we went down to Dillons Candy Store, what a treat that was, it is an awesome store. We decided to walk back it wasn't to far and weather was pretty good.

I am glad you all like the song on Mitchel's website, it is truly an inspiration to me everyday. Thank you for your continued prayers and faith believing in Mitchel's complete healing.

Prayer request:

1. Mitchel will have a great week with treatments. The 3F8 will continue to work and he will be cancer free forever.

2. Mitchel will lay still for his scan on Saturday so we can come home on Monday 1/23. If he does not lay still we have to stay until the 26th.

Love to all,

Mary

Tuesday, January 17, 2006 2:11 PM CST

Hi everyone,

I have not been able to get to the computer the last couple of days, sorry for the delayed update.

Mitchel's treatment has not gone too well the last few days, his pain has been very intense and no aparent reason. Today he needed 3 rescues with dilaudid and he is still sleeping it off. I hope the rest of the week will be better for him. I feel so helpless watching him suffer through so much pain, I want to do something but I can't.

I spoke with Dr. Kushner this morning and he indicated to me that they are still considering doing ratiation on several places just in case there are any cancer cells hiding out in those places that were persistant after chemo and transplant. These places are his femur bones, and his left collar bone, possibly his arm. I am glad they are being extra cautious because this type of cancer hides away in your body and sometimes does not show up on the scans. I am not glad about putting him through radiation again, but I know the doctors will make the best decision.

We will have his urine test back on Friday and we are hoping they will be within normal range, then we will have his MIBG scan results on Monday after his bone marrow. Dr. Kushner said he will sit down with me and go over everything then. The bone marrow results will take about a week. Please pray for the doctors to have wisdom as they look over Mitchel's scans and make their decision.

Not much else to report, the mood this week seems to be a little down. Please continue to pray for Mitchel's complete healing and his scans will show NO CANCER. He has been playing everynight with his friends so that part it going great.

Mike is taking care of Michael this afternoon the school called and he was crying with a ear ache so he will be going to the doctor tomorrow.

Please pray for me to have peace it seems that my spirit this week is a little restless, can't imagine why!!

You all are so awesome to continue with your encouraging words and prayers, thank you all so much.

Love to all,

Mary

Wednesday, January 18, 2006 10:11 AM CST

Happy Wednesday,

We are here in the room and Mitchel is starting his treatment, he has had his premeds but the 3f8 has not kicked in yet.

I just signed the conscent form for Accutane, it is that time again and he will have to take 6 rounds of it. It will consist of two pills the morning and one at night. He has been on it before and was not able to swallow it but hopefully he will be able to swallow it now. Accutane is a high dose of vitamen A and helps the cancer cells mature, that way they just go away and do not start spreading and grow as immature cancer cells would do. There are alot of side effects but in the past Mitchel has done pretty well with it. Unfortulately when he starts this he will be on medicine full time, he takes the 3f8 for two weeks then accutane for two weeks, this is on top of daily injections for 17 days with the 3f8 and bactrum 3 days a week twice a day. Ugh, I feel so bad for him, he just wants to be free of medicine.

We are planning on going to the Lion King tonight, we tried to go last time but Mitchel ended up with a fever. Last night we went with a group to see Cheaper by the Dozen II, it was really good, Mitchel lasted up until the last 30 minutes so I will have to watch it again to see how it ended. We had a really great time getting out with the ther families.

Please continue to pray for Mitchel's complete healing and his scans coming up on Saturday. We are believing in clear bone marrows and clear MIBG scans.

Better go Mitchel's pain will be starting soon.

Love to all,

Mary

Friday, January 20, 2006 8:53 AM CST

TGIF everyone,

I thought this day would never get here, last day of treatment for this cycle. Yipeee!!!!

Last night we ventured out to Nintendo World with our friends Kellie and Dawson, the boys had a blast. The thing I love about NY is all the stores here are so huge, usually two or four stories tall. We made our way to the NBA store and Mitchel had several things picked out. He wants to show his daddy everything when he comes with us next time.

Mitchel's treatment continues to be very painful and we are hoping it will ease up a bit today. He knows it is the last day and he is excited to have his needle taken out of his port today. He will have his MIBG scan tomorrow morning and I have been talking to him about be still for the scan all week.

We both miss home so much and cannot wait to get home.

Yesterday a lady was getting on the elevator with us and she commented on how beautiful Mitchel's eye were he looked up at her and said God made my eyes blue, everyone was amazed he said that. He is so proud of his baby blues, he truly understands that they came from God. What a guy!

Please continue to pray for Mitchel's complete healing and that he will lay still for his scan in the morning. Also pray for clear scans and bone marrows on Monday morning.

Love to all,

Mary

Saturday, January 21, 2006 11:43 AM CST

MITCHEL DID IT!!!!!!!! HE WAS COMPLETELY STILL FOR THE SCAN!!!!! I AM SO PROUD OF HIM!!!!!!!

WE ARE COMING HOME MONDAY!!!!!!

I AM SO EXCITED, HE WILL NOT NEED THE SLEEPY MEDICINE AGAIN FOR MIBG'S.

THANK YOU ALL FOR YOUR PRAYERS!!!!! GOD IS GOOD!!!!!

LOVE TO ALL,

MARY

Monday, January 23, 2006 8:19 AM CST

Happy Monday,

We are coming home this afternoon!

I have a few things to mention that I forgot on the last update. First of all Mitchel's VMA/HMA test came back within normal levels, this is the first time since he was first diagnosed. These are levels they check in the urine for tumor activity. Also, we had a test done to check the levels of his immune system I think it is called a PHA levels, anyway the test came back perfect. This means he can stop taking his bactrum his immune system is strong enough to fight off infections like, pneomonia. He has been taking it for over a year, what a blessing it is, especially with him starting his accutane.

We have come such a long way and I know we still have a long road ahead but this is all such great news!

We will be tonight, please pray for us to have a smooth flight home.

Thank you all for your continued prayers and encouraging words. We love you all!

Mary

Tuesday, January 24, 2006 9:44 AM CST

Happy Tuesday,

We are home!!!!! I cannot tell you how great it feels to be home again, this time it feels like we have been gone for a year.

GREAT NEWS! Dr. Kushner called last night and Mitchel's MIBG scan is completely clear!!!!!!! We are just waiting on the bone marrow results before we can officially say he is NED, NO EVIDENCE OF DISEASE!!!!!

We will continue to return back to NY for the 3f8 treatment until Mitchel's immune system rejects it. The type of cancer Mitchel has, neuroblastoma, has a very high chance of relapse and this is our best chance to keep the cancer away. This treatment will destroy any cancer cells that try to come back, it also is training Mitchel's own immune system to fight the cancer cells on it's own.

Mitchel was really giving his nurse the business in the bone marrow procedure room, he wanted to make sure they knew the bandages they put on him last time hurt so bad when we tried to remove them. They let him pick out bandaides instead, they are less painful when you try to remove them. Dr. Kushner said this one should be the last one for a while, I think 3 months or so.

Mitchel is feeling so great, he was very upset he did not get to start school today but I just wasn't prepared today since we just got back last night. I told him he could start tomorrow. He won't be a full time student since he has so many doctor's appointment while we are home this time. He will have outpatient surgery on Friday, February 3 to have his port removed. The port was put in under the skin to be accessed whenever he has treatment, without the port he will have an IV put in for the treatment which is the only draw back, but he will be completely free of any port of line after his treatment and he will be going on an 8 week schedule to NY soon. I think we have two more treatments at every three weeks then we go to 8 weeks. We all cannot wait.

Well I better go, I have alot to get done. But before I go I just want to thank you all from the bottom of my heart for all your prayers and love you have given us everyday. We could not make it through any of this without you.

Love to all,

Mary

Wednesday, January 25, 2006 12:28 AM CST

WHAT A WONDERFUL DAY TODAY HAS BEEN!

Mitchel is feeling so great he just loved going to school. He cannot wait until he goes all day. Everyone was so excited about seeing him there this morning, they have been waiting for this day as much as we have. God has truly given us the strength to make it to this day. It has been a long journey and we have continued to be faithful in our trust in God and we will always be believing in his almightly power. Mitchel is a miracle, we knew this day would come.

We have to travel to Tulsa in the morning so he was a little dissapointed to miss his first day of school, but we explained to him that he will not be able to go everyday. He has a consultation with the pediatric surgeon in the morning to remove his port next week. Then we are meeting my family for my birthday lunch in Tulsa. I cannot wait to see everyone, it has been too long.

We are so happy today, I am overwhelmed with joy!

Love to all,

Mary

Monday, January 30, 2006 1:58 PM CST

Happy Monday,

Sorry it has taken me so long to update, but we have been so busy around here.

First of all Mitchel's bone marrow is CLEAR AGAIN!! THIS IS THE THIRD ONE TO BE CLEAR!

The pediatric surgeon in Tulsa did not want to wait to remove his port for Friday so he rescheduled it for tomorrow. This was due to the ecoli infection he had in his line last time. It will be at 12:45 at St. Francis hospital, and it will be outpatient. We will have to return to Tulsa on Thursday for lab draws, he will have his HAMA blood test and a few other ones done. He begin his accutane this afternoon and he is not looking forward to it at all. Please pray that this will go smoothly.

He has been enjoying school so much, I have not told him about tomorrow yet, he will be dissapointed to miss school again.

Not much else to report for now, thank you all for your continued prayers. We love you all,

Mary

Tuesday, January 31, 2006 9:17 PM CST

Hi everyone,

Thanks for checking in on us. Mitchel's surgery went very well. He did wake up a little cranky so they gave him some more sleepy medicine and the next time he woke up it was much better. He is home and feeling just great, I even caught him outside on the trampoline just jumping away. He sure doesn't feel like he just had surgery, thank goodness. As you all can imagine he wants to go to school tomorrow, nothing is stopping him from going to school. I told him to call me if his shoulder starts to hurt, he said he would, but I don't anticipate any calls from him he is feeling so great.

My experience today at the hospital was kind of emotional, I was in the same surgery family waiting room as before when Mitchel was first diagnosed. As I sat there all these emotions back to me and I felt so overwhelmed like I was reliving that nightmare all over again. It was October 4, 2004 I will never forget that day, I remember everything about being in that room waiting to find out how Mitchel was doing through his surgery. I was still in shock of finding out he had cancer, I remember all the people that were there and how supportive they all were. Today, I was so glad to get out of there, thank goodness it was outpatient and we were not there for long. To be in a place again where your heart was so hurt and you felt no hope can be very strange, it was very hard.

On a lighter note Michael has decided that he longer wants to share rooms with is brother and his is old enough to enjoy a room all alone. That was fun trying to explain it to Mitchel, then Mitchel decided he wanted to move into the room, but Michael insists on having his own room. Michael did compromise and he is letting Mitchel sleep on the floor tonight in his new room, I figured as long as they are both happy with that arrangement let it be. Michael is also requesting a upgrade on his new room, he wants new paint and decorations, so I guess my next few days will be busy working on that project. It was so cute tonight watching them both carry their comforters and pillows down the hallway. I predict by the end of the week they will both be moved in to the new room, which is just down the hallway.

Thank you all for your continued prayers, we have appreciated you all so much.

Love to all,

Mary

Thursday, February 2, 2006 5:56 PM CST

Happy Thursday,

This week has just flown by, I cannot believe it. We are all doing just great, loving being at home every minute.

As I dropped off the kids this morning Mitchel decided that he does not want me to walk him in anymore, he is a big boy and can do it himself. I could not resist I had to at least open the door for him and watch him walk down the hall to the right classroom. He did it, he knew exactly where to go. He is growing up so fast!

This afternoon we went to Tulsa for his lab draw and we made sure both arms were covered with the numbing cream, he did just fine until the put on the turnikit (sp)then he lost it so we had to hold him down anyway. He did not feel any stick with the needle and that was the main thing.

His face is getting very dry with the accutane and so we are lathering him up with lotion. Not much else going on just watching the kids play and have a great time being together.

Thank you all for your prayers, we all are so blessed to have you as our friends.

Love to all,

Mary

Tuesday, February 7, 2006 1:11 PM CST

Hello everyone,

Sorry we have not updated in a while, no news is great news!

We are all just fine, loving every minute of everyday. Mitchel is feeling so great! Yesterday he said he was too tired to go to school so he stayed home with mom and we enjoyed our morning together. Today he decided he would go and he loved it. He was just telling me how much he loved going to school and he was going to go again tomorrow. A day missed here and there is not going to hurt and I know when he says he is tired that usually means his little body needs to rest. The accutane that he is taking could be making him feel a little tired. He really is doing great taking it, it is drying out his face really bad though, so we keep him lathered up with lotion and chapstick. That really is the only side effect so far.

The reality of going back to NY is here, they just delivered his medicine for the injections he receives while on the treatment. Those will start tomorrow, thank goodness for that numbining cream, he loves it. There is no pain with it. I am still learning how to give injections so I am really glad he lets me put on the numbing cream, a while back he wanted no part of the cream so we had no choice but to just stick him without it. We have come so far.

Again we will be anxious to know whether we have a room or not at the Ronald House. I will be calling them this week to find out, but you know really God is in total control and I am not going to worry about that. We will certainly be praying about it and letting God take charge, it seems like a minor request especially next to asking for Mitchel's complete healing, but God really wants us to ask for those little requests too.

We have been encouraged to stay close to God and continue to believe in his power and mercy. This has been an uphill journey and we are so thankful each and everyday for everyone that has given their time to come along with us, through prayer and encouragement.

We also pray for everyone who has touched our lives, some we have met and some we have not. God knows each and everyone of you and that is all that matters.

Prayers request:

1. Mitchel's complete and continued healing.
2. We will have a room in the RMH
3. Please pray for Michael, as he will be staying here
when we travel to NY with Mitchel.
4. Strength for Mike and I as we travel with Mitchel, as
parents it is hard to go through these treatments too,
no one should have to watch their child suffer.
5. A special prayer for Mitchel, as painful as these
treatments are they are necessary and we want them to
be successful.

Thank you all again for your time in prayer,

Love to all,

Mary

Friday, February 10, 2006 9:45 AM CST

Happy Friday,

Is everyone ready for a wonderful weekend? We are, it has been so much fun being at home these last few weeks. The boys are great and we love them so much.

Mitchel is handling his injections like a champ and he is not complaining about his dry skin. This morning his lips were really cracked I cannot imagine what they would look like without all the stuff we have been putting on them. Last night I noticed that his arms had a few really dry patches, I used olive oil on his arms and they look a whole better this morning.

This morning Mitchel decided he was not going to school today, I know how much he loves school so he must be feeling a little tired today. At this point I am not worried about him not taking school more seriously.

I called the RMH this morning and they do have a room for us, Thank you Jesus! And thanks to all the prayer warriors!

I checked the weather in NY for Sunday and can you believe they are expecting snow on Saturday and Sunday. Perfect timing huh! Oh well what can you do, hopefully our flight will not be delayed much. We are flying Delta to Kentucky then on the NY on Sunday, Mitchel is very excited about Daddy going with us the first week. This helps him so much to have us both there. Michael is a little upset and feels left out but we have no choice to leave him here because of school. Grandma Bailey will be here with him and I know she will make it all better, she's the best grandma in the world!!!!

Well we hope everyone has a great weekend, please pray for our safe travels and that Mitchel will benefit from this treatment. We do not want the cancer to ever return!!!!

Love to all,

Mary

Sunday, February 12, 2006 5:31 PM CST

Well hello again,

We went to the airport this afternoon and we are now home, NO FLIGHTS TO NY AVAILABLE. The poor lady at the airport tried everything to get us there but no such luck. Our flight was cancelled and rescheduled for Tuesday morning, that does not help since Mitchel's treatment needs to start tomorrow. Dr. Kushner said to just postpone his treatment a week, so that is what we are doing.

Hopefully the weather will be much better next Sunday. We will again have to wait and see if we have a room at the RMH.

Another week at home, yeah! I am sad that Mitchel had his injections for nothing but what can we do, he will have to start them again on Wednesday.

Thanks for checking in on us,

Love to all,

Mary

Tuesday, February 14, 2006 9:09 AM CST

HAPPY VALENTINE'S DAY!!!!!

We are so glad to be home, I know another week at home will do wonders for us all.

The boys are so excited about school today, Mitchel opened the shower door this morning and said "Happy Valentine's Day Mommy", the smile is still on my face. They love any and all holidays. This afternoon I will be taking them to see Curious George as part of their valentine surprise. Michael takes after me, he loves going to the movies and eating popcorn, hopefully Mitchel will last through the whole movie.

Mitchel continues to feel so great, his dry skin seems to be improving already. He finished his accutane and will be off of it for 3 weeks, he is so excited about that. He will start his injections again on Wednesday getting him ready to start his treatment in NY. This will be his 3rd round of the 3F8.

Please remember all the families that are fighting this disease, our hearts are broken as we have learned another friend with neuroblastoma has earned his angel wings. The Corlette family needs prayer for comfort and peace right now. www.caringbridge.org/al/daltoncorlette

I am so excited about getting to see Betty Jo while we are in NY, we are planning on going to lunch on Monday. I have a picture of her and Zachary sitting on the window seal in my office and it makes me smile everytime I look at it. She is such an inspiration to me and my family.

Thank you for your continued prayers, we are so encouraged and we gain so much strength each and everyday.

Love to all,

Mary

Wednesday, February 15, 2006 9:25 AM CST

Happy Wednesday,

Hope everyone is having a terrific day. Mitchel is home today, he has a little bit of a cough so I thought it would be best to keep him in. I know they go outside at school for recess and I did not want to ask the teachers to keep him in. No one likes to be the only one staying inside and watch everyone else play.

The boys loved the movie last night, we had popcorn and lots of snacks. Mitchel did not last through the whole thing, but we had already made plans for me to call Mike if he wanted to come home, not the first time for this to happen. Just about the time Mike arrived to pick up Mitchel the movie ended and they boys decided they wanted to go to the arcade. We had so much fun watching them play their favorite games. I felt bad leaving Michael in the movie by himself but I had to stand outside the door because Mitchel was being loud, he wanted to go home until he saw the arcade, imagine that!

Grandma Bailey bought two goldfish for the boys, they keep them in their room and they love them. Their names are Daisy and Luigi. Tonight we will be cleaning out the fish bowl and they are both excited to help with that project.

My husband gave me the most wonderful valentines gift, a NIV Life Application Bible. I am so excited about it, I have been wanting one for a while. What a wonderful and perfect gift from a wonderful and perfect husband.

Love to all,

Mary

Friday, February 17, 2006 9:22 AM CST

Happy TGIF,

Great news! We have a room again at the RMH in NY. Thank you Lord!

We are truly blessed to have so many caring people loving on us, thank you all so much for your continued prayers and your encouraging words. We have made it through some really tough days and we know that you all have been there for us every step of the way.

Mitchel is doing great, his skin is finally looking better. He still has a few dry patches here and there but not anything like it was and his cough is getting better too. His injections are going good, thank goodness for the numbing cream, he is so proud of himself being so brave and counting to ten as I give him his shots.

We are going to Grandma and Grandpa Baileys tonight and the boys are so excited, they love going there so much. We will also get to see Mike's brothers and their families, we can't wait to see everyone.

Our flights leave bright and early Sunday morning and so far the weather is pretty clear for NY, it is just going to be very cold. Mike will be going with us for the first week, I cannot tell you how much this means to Mitchel. He loves having us both there for support. I know it is not easy for Mitchel to go through this, but he continues to amaze us all. We are not looking forward to seeing our baby go through so much pain again but we know that is what he needs to keep the cancer away.

We wish every one a great weekend!

Love to all,

Mary

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