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Wednesday, February 17, 2010 1:11 PM CST

Thanks for checking in on us. We have completed the first of two 8h9 injections. We will be at the hospital for a scan later today and several blood draws. His scan is at 6:00, so we will be here all day.

Mitchel is taking his meds like a champ, we are so proud of him. He is on Cytomel and SSKI drops daily for a few weeks to protect his thyroid, for three days he takes Decatron, steroid, Zantac for his tummy along with Tylenol and benedryl and zofran. Today he receives everything through his line but the rest of the time he will take it by mouth. They also gave him a dose of dilaudud and he feels pretty good right now.

We did receive some bad news today. Mitchel has a new spot that showed up on his MRI of the spine. It is on the C1 vertebrate body. It does not show up on the MIBG as of yet, so the plan for now is to watch it and possibly do radiation after this treatment. It is a very small spot.

My reaction was better than I thought it would be. I can only handle one thing at a time so that worry will just have to wait, I need to get through this first.

Mitchel is watching Spongebob and nibbling on grapes. His energy level is returning back to normal and he looks great. This morning we walked to Dunkin donuts and filled up with sugar, he loved it :).

Thank you so much Mrs. Trotter for all the messages from his class, he read and enjoyed everyone of them.

Thank you everyone for your prayers, we have had several prayers answered since we have been here.

Love to all, Mary

Tuesday, February 16, 2010 3:36 PM CST

It has been snowing here all day, this morning it was beautiful but now everything is just a mess outside. More slush than anything.

Yesterday and today we had the day off from the hospital and Mitchel has enjoyed it so much. Today we went to ToysRus and then to Dylan's Candy Bar. He loved looking at all the differernt candy they have.

Tomorrow we will return back to our schedule at the hospital. He will have his injection and two scans, not really too much.

Mitchel has been feeling much better, his friend from England is here for a few days, Jordan. They have been playing alot in the playroom.

Thanks for checking in on us,

Love to all,

Mary

Saturday, February 13, 2010 8:47 PM CST

Thanks for checking in on us. We have been so busy these last few days. Mitchels port is in and they conducted the study flow yesterday. This is to make sure the port is working correctly. Next week we will do the test dose, on Wednesday so for now we gave some much needed down time.

Today we went Bloomongdales, the Candlelighters had a party set up fir the kids. It was fun, especially getting the goody bags filled with some great things. Tomorrow we are going to the Gazillion Bubble Show, we heard it was an awesome show.

Mitchel is starting to feel much better and has been taking all medicine with few complaints. Thank goodness Mike is here to help with that, Mitchel has to take 2 tablets everynight and 7 drops of the SSKI drops to help protect his thyroid from the upcoming injections. Next week he will take another 5 different medicines for a few days during the injection.

I am so proud of my little guy, he is so brave. We continue to believe in the power of prayer and thank you all for remembering Mitchel in your prayers.

Love to all, Mary

Wednesday, February 10, 2010 3:37 PM CST

Let is snow, Let it snow, Let it snow, everything is white here and it is so slushy. The streets are pretty clear just very wet.

Mitchel did awesome today, he had a blood draw this morning and then two scans. We stayed at the hospital pretty much all day and he did not complain once. This is his first day to stay awake all day without taking several naps so I think he is starting to get back to his old self.

His surgery is scheduled for 11:00 tomorrow, after that he will be checked into the hospital for a one night stay.

Mike did not make it in, but he is scheduled for tomorrow morning. Hopefully the flight will not be cancelled again.

Thank for checking in on us,

Love to all,

Mary

Monday, February 8, 2010 3:18 PM CST

Happy Monday,

We are back at the Ronald after spending a few hours in clinic. Mitchel had his blood counts done and we met with the doctors. His platelets are stable at 122,000 last Thursday they were 121,000 so I am thankful for that. When we went in to see the doctors he was asleep in the wheelchair and he usually is walking, so they immediately asked what's going on with Mitchel. Once they found out it has been about 7 weeks since radiation they knew he was suffering from a side affect from radiation that effects all patients that have total cranial/spinal radiation. It was a relief still to talk with them about Mitchel being so tired and not even wanting to play or do anything for about 6 days now. It is suppose to last up to two weeks, so he has about another week of this. He is eating, barely and drinking some. Thank goodness for popcycles, he still has a craving for those. He got sick in the playroom this morning after eating a little bit of cheeseburger and some sips of his HiC. Not sure where that came from, he has not been sick in a while. The HiC was probably too sweet. Anyway, he is sleeping up in the room and probably will be for a while, any trips to the hospital wipe him out.

After receiving anesthesia for his bone marrow biopsies tomorrow he will probably be alseep for a long while. I am glad his MIBG injection is not until later in the day, 3:00 pm.

I wish there was good news here at the house, but unfortunately there has been some bad news for some parents. Two of my friends have found out their children have relapsed, and one is for the second time. One mom felt something was wrong several weeks ago and their urine results were elevated so sure enough her daughter has relapsed in quite a few places and the bone marrow after being clear and off treatment for 3 1/2 years. There was another family who's daughter was getting 3F8 this morning and she stopped breathing, they brought in the crash cart and everyone was rushing around. She was stabilized when I left the hospital but I cannot imagine what her parents are going through.

Please pray for all the families here that are going through so much pain right now. There is nothing more painful than seeing your loved one suffer, especially a child. We are constantly having to answer those tough questions that our kids want answers too and sometimes we just don't have an answer. We are all holding on to the hope that there will be a cure someday soon.

We still have 3 weeks left before we can go home. I hope Mitchel will begin to feel less sleepy and gain more energy everyday. I know he wants to feel good so bad.

Thanks for checking in on us,

Love to all,

Mary

Sunday, February 7, 2010 11:12 AM CST

We are enjoying our day, Mitchel has been so tired lately. Yesterday he barely got out of bed, I had to beg him to eat something. Alot of parents warned us that with the total cranial/spinal radiation the kids will go through a period where they are very tired and sleep all the time. I thought Mitchel would not experience this but sure enough it has hit him. I am so glad I was told by the other parents so I would not be freaking out right now. It is still hard to see him so lifeless and just not himself. He usually wakes up and heads directly to the play room, last night he did not even want to come down here. I know he will get through it just like he has before, I just wish it would hurry up and be over with.

He did get up this morning and take a shower and eat breakfast, so maybe he is about to turn the corner.

This week will be full, he has something everyday. On Monday, he will have blood work, Tuesday he has MIBG injection for his scan on Wednesday and bone marrows, Wednesday MIBG Scan, Thursday surgery and one night stay in the hospital, Friday starting the test flow study to his new Omaya port in his head. This will take all day, and on Saturday back to the hospital for another scan. Thank goodness Mike is coming in on Wednesday to help me. I always feel a weight lifted off of my shoulders when he arrives.

Thank you all for your continued prayers and especially thank you Karin Lea for sending us that wonderful package. Mitchel got a new Webkinz, the beaver, and I got some chocolates and shower gel from Bath and Body. Karin lost her son a few months ago and it amazes me that she can still move forward and reach out to others like she does. Thank you so much Karin!

We will keep you all posted at we go through the week, I know we will be lifted up through prayers everyday.

Love to all,

Mary

Thursday, February 4, 2010 1:52 PM CST

Thanks for checking in on us. We made it to NY just fine last night. Right now we are waiting to see Dr. Souweidane hopefully it will be soon. We have been waiting a while.

At 5:30 he has an MRI then we will be done for the day.

I will update again when we know more about everything.

Love to all, Mary.

Saturday, January 30, 2010 10:24 AM CST

Good morning everyone,

We are snowed in, again! It snowed all day yesterday and right now the snow is so pretty.

The boys are up and ready for a great weekend, this will be Mitchel's last weekend at home for a while. We will be leaving on Wednesday for a long stay in NY.

The sun is shining and I am sure they will venture outside eventually to play in the snow. Mitchel has been feeling wonderful these last few days, he looks great too. On Monday we will have his blood counts done again to see if they have stayed stable or dropped any. You never know with kids, they could have low platelets and still run around playing like normal, so we will see.

Mitchel went to school all day Thursday but because of the snow school was cancelled on Friday. He was planning on going but wasn't dissappointed about it being closed.

Well thanks for checking in on us, hope everyone has a great weekend.

Love to all,

Mary

Thursday, January 28, 2010 6:29 PM CST

Happy Thursday,

We are all bracing for the bad weather that they say is coming our way. So far it is just cold, but we are supposed to get snow and freezing rain.

Mitchel went to school today, first time this week, and I was thrilled for him. He probably could have stayed home with me but I encouraged him to go and see his teacher and friends that miss him so much. I know he was glad to be there because I did not get a call in the afternoon to pick him up. His stomach issues have slowly but surely been better.

We got our tickets for NY and we are starting to talk about what we want to do while we are there. He always wants to visits Nintendo World and ToysRus so I am sure that will be on our schedule at some point.

He continues to receive cards from so many people here at home and we are humbled by the love and support you give our son. Thank you all so much!!!!!

Love to all,

Mary

Monday, January 25, 2010 2:31 PM CST

Mitchel's counts look really good, so far he has escaped the dreadful neutropenic days. We were not really sure what to expect with this chemo but so far not too bad.

Our next journey will start next week and we are entering new territory for us. This is already making me ill just thinking about all he will be going through. But back in November when they told us he had relapsed the thought of starting chemo and doing total cranial/spinal radiaiton just about knocked me out and here we are at the finish line. He is still struggling with some after affects of chemo but overall he is doing great.

Thank you all for your love and support,

Love to all,

Mary

Sunday, January 24, 2010 5:37 PM CST

Thanks for checking in on us. We have had a wonderful weekend. We have stayed pretty close to home, Mitchel has been high tailing it to the bathroom all weekend. The after affects of chemo. It seems to be getting better and has never been as bad as we thought it would be. We were prepared for the worst.

I will be taking him in for blood counts tomorrow. We are both a little nervous and anxious to see how the nurse here does with the port access. Each time it is accessed they insert a needle directly into the middle of the port and it goes through the skin to get into the port. The beauty of it is, is that it is a for sure hit to get blood unlike the IV's that can be hit or miss. We keep telling him this is better but while they are accessing his port it is hard to convince him of that. I carry numbing cream with me to put on about an hour before so all he feels is just the pressure and not the pain from the needle going in.

This week should be pretty smooth. We will be enjoying our last days at home before heading out again to NY.

Thank you all for your continued prayers.

Love to all,

Mary

Friday, January 22, 2010 2:07 PM CST

Sorry for the lack of updates, our computer has been in the repair shop because of a nasty virus that totally shut us down.

Anyway, things have been going very well. Mitchel finished chemo last Friday and he is starting to feel better. It has been several days since he has gotten sick. He has been attending school off and on, I usually get a call in the afternoon to pick him up.

He was awarded the Citizens award at school this morning, he was so happy to receive it. I did not get any pictures because he said no pictures please. I understand he doesn't like the way he looks without hair. So far I haven't seen any sign of his hair coming back in, he never lost it completely but what is left if just fuzzy. He still likes having a little fuzz.

I continue to think about having to return to NY in a few weeks. It is hard to be positive about going, I am afraid of what is next because it is something we have not done before. I have some friends that been through it but I still am afraid. Mitchel doesn't really know what is next, he only know we are going back in a few weeks.

They have already scheduled his MRI of the spine and brain. I am sure he will have all the other usual scans while we are there.

Thanks for checking in, hope everyone has a great weekend.

Love to all,

Mary

Saturday, January 16, 2010 10:39 AM CST

Happy Saturday,

Even if the sun is not shining here was are still celebrating! Mitchel finished his chemo like a champion.

We were remembering when this all began back in November when they told us about chemo and radiation. We were so scared and did not want to do it. Well here we are finished with it and so happy.

Mitchel has been feeling great, he got sick a few times the last few days but it seems to get better each day. He has a trememdous interest in everything that happens to him. He came in this morning and said look I have a bump under my skin, pointing to his chest, I reminded him of his port and he said oh yeah, I forgot. He smiled and walked off, I went and got the pamphlet about the port and showed him how it looks and works. He was very interested in all the information.

They will be out of school Monday, Mitchel has a doctors appointment for his Pentanamin breathing treatment and then we will be going over to visits some friends. We decided to take him off the bactrim, which he was taking twice a day for three days a week and instead put him on the Pentanamin treatment which is once a month for a five minute treatment. He is thrilled about the switch.

We will be enjoying our time at home before heading back to NY Feb 3 for about a month long trip.

Thank you all for your continued prayers,

Love to all,

Mary

Tuesday, January 12, 2010 3:57 PM CST

Thank you all who believe in the power of prayers! Mitchel has been doing so great with his chemo this week so far. He loves going to the hospital because he is treated like a king. they are not as busy as NY hospital and he enjoys having his own private room with a TV and Wii, however on Monday he discovered Webkinz and I have a feeling he will be collecting them. He played on the internet with them today in the hospital.

He got another one today for taking his chemo last night that we mixed in apple juice. Since he does not swallow pills yet we have to pour out the powder and mix it in juice. Mike told him that we cannot play around we have to take it right when it is mixed and that is excactly what he did. The other chemo is given through his IV in the outpatient day hospital. We called the pharmacy about the oral chemo he takes at home and asked how much the prescription would be, wow it was over $2300.00 for five pills. Mitchel's doctor ordered it through the hospital and they dispense it everyday to take at home. Our insurance pays so much more when it is billed through the hospital instead of the pharmacy.

Tomorrow Grandma Bailey is going with us and Mitchel is probably going to get another Webkinz, it doesn't help the gift shop is right there as you enter. Someone planned that right.

Thank you all for your prayers,

Love to all,

Mary

Sunday, January 10, 2010 9:03 AM CST

Happy Sunday,

Mitchel is doing great, it's hard to think of giving him chemo tomorrow and making him sick all over again.

He is as prepared as can be, we have talked to him about it and explained it is something that has to be done to keep the cancer away. Last night he started his Suprax, which is given to help lessen the loose stools from the chemo he will be taking. He said let me get this straight, you are giving me medicine to give me the runs and then give me medicine to stop it, does that make sense to you????????? I said you are right it is crazy but we have to do it anyway. I thought my answer was shallow but I wasn't ready for the comment he made. As he has reached an older age he has learned how to express himself and let you know what he is feeling, which is very good.

I know he will go tomorrow and be a trooper as usual.

Please pray that all our travels back and forth to Tulsa will go smoothly and Mitchel will be able to handle the chemo especially the oral chemo he be starting too. I am sure we will be breaking the capsule in half and putting the powder in something for him to eat.

Thank you all for your continued prayers, I am sorry if anyone has received their mail returned that was sent to NY, apparently some letters were returned to sender.

Love to all,

Mary

Friday, January 8, 2010 12:50 AM CST

Thank you all for checking in on us, sorry I have not been good about updating more frequent.

This kids have been out of school alot this week because of the cold weather. Mitchel only went one day, which was Tuesday and he made it to 1:00 oclock before calling me to pick him up.

On Wednesday we went to his appt. with the Surgeon in Tulsa who would be performing the port placement he is getting to replace the temporary central line he had put in in NY. That appt. turned out alot different that we expected, Mitchel hates medical surprises and I don't blame him one bit. The surgeon took one look at the temporary line and said it needed to come out before he put the new one in and it had to be done right then in instead of doing it at the same time as putting the port in. We told Mitchel don't worry they will take it out when your asleep, well as most of you know sometimes things just don't work out the way you assume they will.

So we went to the lab and they did his blood draw then they put us in a room for the surgeon's nurse to come in the remove the line. Actually, it went very smooth, to our surprise and Mitchel's. He was nervous of course but the nurse was very good and got it done quickly, I thought Mike was going to pass out when they pulled the 9 inch tube from his chest that was stitched to his skin to hold it in place. I honestly don't know how Mitchel does it.

Yesterday we drove in the freezing weather to the hospital and arrived about 5:45 am. It was all done outpatient in the new Children's hospital they built in Saint Francis hospital. It was very nice and the staff was excellent. Mitchel seemed to be very calm at first, but immediately started asking the nurses questions about the procedure and how they planned on getting him to sleep. He hates the mask they use to gas them to sleep and he prefers the propofal so he had no problem telling them all about his ideas. They were impressed he knew so much about how it all works, I am sure most patients his age don't know as much as he does. I told them they were have to explain everything to him because he needed to know for him own peace of mind. He knows how hard it is to get a IV in but he insisted on that instead of the mask. So they brought in the best nurse to get the job done and we braced ourselves for the worst. She said have you ever had the J tip syringe used to numb the IV location before. We all looked at each other and so no but we would be interested in trying it. It is a syringe that somehow has enough force to blow novacane (?) to numb the skin without using a needle. After the nurse did that Mitchel said wow I'm impressed, and she got the IV put in without any pain at all. A brilliant invention

Mitchel did wonderful, and was in for about an hour. He recovered so much better from anesthesia because they let him sleep for about an hour afterwards. He usually is a bear in NY they get them in and out so fast he doesn't get to sleep for very long after his bone marrow procedures.

His shoulder was a little sore last night but not enough to take tylenol he said. This morning he has been running around playing so I think he will recover very well. He will begin his chemo on Monday morning at Saint Francis. He has had this chemo before but he will also be taking an oral chemo that he has not had before. I have been told there are few side effects but every patient is different so we will have to wait and see.

Thank you all for your continued prayers and kind words, the support we get from everyone is so awesome.

Love to all,

Mary

Saturday, January 2, 2010 5:08 PM CST

Thanks for checking in on us. We are enjoying being at home so much. The boys have enjoyed all their time at home for Christmas break. Tonight they have a friend over and are having a ball. They got a fooseball table for Christmas and it has already been used alot, they love it.

While we were at the store daddy showed up and took his hat off to show Mitchel his new hair doo or I should say lack of hair, he got his head shaved. It was after that Mitchel took off his hood and let everyone see his bald head too. He felt so secure with himself after seeing daddy's head.

We met with Mitchel's local Oncologist in Tulsa on Thursday and he was happy to see how well Mitchel looked. His blood counts looked really good, they had started to drop at the beginning of the week but have already come up. They will be scheduling his port placement soon, Dr. Kirkpatrick will make the arrangements next week. Mitchel will be starting another round of chemo on Monday 1/11 and 5 days.

We will have his counts checked again Monday.

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

Love to all,

Mary

Saturday, December 26, 2009 2:41 PM CST

Ask and you shall receive, Mitchel wanted a blow out Christmas and that is exactly what he got. It was amazing, stockings were stuffed to the top and Santa left lots of presents under the tree. Mitchel got up first and went in each room waking everyone up. He was so excited.

We had a wonderful time at Mike's parents, I am so blessed to have Mike's family in my life.

Mitchel has been loosing all of his hair over the last few days and now it is pretty much all gone. I have been very depressed about it, but he seems to be handling it pretty well. He cried some and kept asking why this had to happen. He now has accepted it and has plans to where a hat everywhere he goes. We told him he did not have to go to school all the time because he has been so worried about the kids laughing at him. We will just have to take one day at a time.

He has been sick off and on also, we are hoping this will get better soon, especially since he has to start chemo in a few weeks.

We did get alot of snow and the boys love it. Tuesday we are suppose to get more, hopefully not too much.

His counts were beautiful on Thursday, we found a great place here in Bartlesville to have his blood drawn. It saves us having to drive an hour to Tulsa each time. I was worried they would not do it because of the temporary line.

Hope everyone had a wonderful Christmas

Love to all,

Mary

Wednesday, December 23, 2009 8:18 PM CST

We made it home safe and sound. All of our flights were on time and went very smooth. Mitchel was not sick once, he was a little tired but overall he felt good.

Today he got sick when we were driving around, he had just drank a full glass of strawberry milk and I think that did it. He has been feeling so good I was surprised when he got sick, he feels better now and has been eating.

Tomorrow we take him in for his blood counts. I am not expecting them to have dropped to much, he counts on Monday were really good. Platelets were, 172,000 and hemoglobin was 12.2. I did not get his ANC count but I am asuming it was good, we did not hear from anyone.

After his blood count we will be heading north to Kansas before the snow starts. We may end up staying a few days depending on the weather.

We are all go happy to be home, our dog Sandy was really glad to see us. I am sure she doesn't understand why we go missing for so long, my oldest daughter comes over and takes care of her when we are gone.

Hope everyone has a wonderful Christmas, we have already received the best gift of all, knowing our Savior Jesus Christ. We continue to believe in our faith and knowing God will always be with us.

Love to all,

Mary

Saturday, December 19, 2009 11:52 AM CST

They say the snow is coming our way, we are still waiting for it. I don't mind of it snows but as long at it doesn't interfere with us flying out Tuesday.

Yesterday went pretty smooth, he got sick a few times but overall it was good. It seems like he feels better after getting sick, he still carries his little bucket around everywhere.

After talking to Mike was decided to go ahead and schedule Mitchel to have his Omaya head port put in here when we return in February, we were debating on whether we should try and find someone at home to do it. Dr. Souweidane will be performing the surgery and we also decided to have his chest port put in at the same time. His counts should be up by then and that way he would only have one surgery for both procedures. The chest port is put in to replace the temporary line he currently has. The difference between the port and temp line is the port fits under the skin and he can take showers or swim and be much more independent, no dressing change with this either. The temp line is also in his chest but it is exposed and has 3 tubies hanging down that can not get wet and the dressing has to be changed. It takes Mike and I both to bath him so I know Mitchel would like the port better.

So far today he has not been sick, I can tell he doesn't feel 100%. We will have his counts checked again on Monday.

The weekends can get quite boring here, we are counting down the days when we go home.

3 more nights and counting.

Love to all,

Mary

Thursday, December 17, 2009 2:07 PM CST

Hi everyone,

Things are getter better each day, Mitchel has only been sick a few times from the radiation treatments. His energy level is not 100% but he still plays and fights with his Michael, lol.

I sat down with Dr. Kramer today and she went over the treatment plan for the Inthrathecal radioimmunotherpy 8H9 which will begin after the next round of chemo. We will be watching his blood counts twice a week to make sure he doesn't need any transfusions in the next few weeks. He will begin his next round of chemo on January 11-15, it will consist of Irenotecan and Temozolomide. The Temozolomide will be a pill so we will need to start working on swallowing.

He will begin to take Bactrim again 3 times a week, it is an antibiotic that cancer patients take when they are on chemo. I will be changing his port dressing once a week, flushing 3 lines twice a week and changing his line caps also twice a week. He will also need to be taken to the clinic in Tulsa twice a week for blood counts.

I am going to get a calendar when I get home because I can't keep up with all this in my head.

We are still on schedule to fly home on Tuesday after his radiation treatment. We have the countdown going on.

I want to thank you all for sending him so many packages and cards. He and Michael have truly enjoyed opening each and everyone of them.

Thank you all for your prayers, please pray for all the families that will not be going home for Christmas. We have been inpatient for one Christmas back in 2005 and it can be depressing.

Love to all, Mary

Tuesday, December 15, 2009 11:57 AM CST

UPDATE: We just got back from Time Square, after two cab rides and shopping at several stores, Mitchel is still feeing great. We will repeat giving him his Zyprexa tonight and Zofran thru his IV tomorrow, that seems to be working :)

Things are going better today, thank goodness yesterday was pretty tough.

We gave him his Zyprexa last night before going to bed and this morning we took him in to get his zofran through the IV and so far this has worked he hasn't gotten sick once.

We are heading out to ToyrUs to let the boys shop.

Thank you all for your continued prayers and for all his packages and letters. He has truly enjoyed looking in his mailbox everyday and having something in there for him.

Love to all,

Mary

Sunday, December 13, 2009 7:37 PM CST

Hello everyone, this weekend has pretty good. Mitchel has been a few times each day but seems to feel good overall. We have kept him on one anti naseau medicine Zofran and that has helped.

Tomorrow we will continue with radiation in the morning and have our days free. Hopefully the weather will be better this week so we can get out.

Thank you all for your continued prayers.

Love to all, Mary

Friday, December 11, 2009 3:50 PM CST

First of all I want to thank everyone for your continued prayers. We have had smiles from Mitchel most of the day and just a few frowns. Overall he feeling much better, he is currently playing the Wii with Michael up in the room.

I think his body is adjusting to all the medicines they have thrown at him. Today they suggested writing prescriptions for what could come next week, the after affects of chemo. The main one is diareah, so we are trying to stay one step ahead of that.

He ate a steak last night and later asked for Cheetos with blue gatorade, that stayed down just fine. This morning first thing he got sick but still wanted his pancakes. He was able to get some down along with popcorn at the hospital and a hot dog for lunch. He has already asked for steak again tonight, so I think he if feeling much better. Mike and I feel terrible when he is so sick, the whole family is feeling much better, thank goodness :).

Next week he will continue with radiation once a day and have his blood counts done three times. They will be watching his blood counts closely because the radiation and chemo can make them come down from normal range. We have met another family here that is in the same treatment plan as Mitchel, they have given us so much hope, their son looks and feels great.

We have the weekend off and we are all looking forward to just resting. We are going to try and go to ToysRUs here but I think going during the week would be much better, less crowded.

The weather this morning was brutal, 17 degrees is a little cold for walking. It cuts right through you like a knife.

Thank you all again for all your support, your prayers are truly being answered in many ways.

Love to all,

Mary

Thursday, December 10, 2009 2:23 PM CST

Sorry I did not update yesterday we were so everwhelmed with the events of the day.

He started throwing up around 4:30 and continued until 9:00 last night. We finally got a vistril pill down him for his stomach and today we ordered the liquid form. First thing this morning he threw up and pretty much all day today. He got a IV dose of vistril before radiation and that helped him relax. He also is receiving a IV dose of Zofran. Today they suggested giving a half pill of Zyprexa to help with vomiting and so far it has helped. He ate several crackers and drank Gatorade. They also sent us back with him hooked up to fluids to keep him hydrated, he wasn't happy about that. We were able to get his Suprex dose down with juice which was good since he missed his dose last night. Suprex is for diareah he probably will get next week from the chemo. I have a whole pharmacy going on in my room.

Right now he is watching a movie Aunt Andrea sent him eating popcorn and seems to feel much better.

We hate seeing him go through this but we know it is what he has to do.

He continues to smile everytime he receives a card, thank you all so much for sending them. :)

tomorrow us last day of chemo, things should get better.

Love to all, Mary

Tuesday, December 8, 2009 4:40 PM CST

We will be glad when this day us over. I knew it was going to be rough but gees, it was terrible. It all started with the IV issue they promised he wouldn't get this morning. The plan was to give him the gas to get him asleep. I guess the anesthesiologist didn't get the memo because she said I don't like to do things that way, it is for his safety in case we need to administer something. So here came the nurses, oh don't worry Mitchel I promise to get it in your hand so
they stuck his hand and sure enough he vein
blew out. The anesthesiologist said oh well we
can just use the gas. Mitchel let them have it with
both barrels, he told them all you lied to me,

that wasn't our agreement. I am glad the line is in so we don't have to mess with the IV again.

He then went to Xray to make sure the line was put in properly, that took about an hour. I guess that would not have been too bad if his shoulder from the brand new surgical procudure wasn't hurting with no pain mess given.

Then he had his chemo that went well. We then went to radiation and started an hr and half late, finally the last appt. was finished. He only made it through the set up and the actual treatment will begin tomorrow. I am so proud of the way he handled each situation, he us so tough and brave. Oh, and he threw up on the way up the elevator.

He is settled onto his bed eating crackers watching spongebob.
daddy will be here at 9:30 tonight.

Tomorrow will be better, I just know it :)

love to all, Mary

Monday, December 7, 2009 7:25 PM CST

Today has been a very long day. We started out doing his radiation and that went well. We went upstairs to clinic and they proceeded to put his IV in. As most of you know Mitchel is hard to stick. The first stick was no good, second no good third and final hit an artery and that was it for sticking. He was screaming at the nurses why are you doing this to me, you said this was the last stick. He even cried out that he was a failure and nothing works on him. They decided to give a
break, I think all his screaming made everyone
on edge, I know I was.

His nurse practitioner, Laticia, asked Dr. Kushner if we could start chemo tomorrow and put it through the temp line they are putting in tomorrow. He will have 5 days of chemo in 4
days instead, there should not be any extra side
effects it doesn't make that much difference.

So tomorrow will begin at 7:00 am and line placement will be at 7:30, they will him the gas
instead of propofal through IV, since he has no
IV. He will then receive chemo and his first
cranial/spinal radiation will be at 2:00, hopefully all effects of sedation will be worn off.

Added to the stress is waiting to find out if Mike and Michael will make it in tomorrow. Their
original corporate angel flight was cancelled out
of Wichita, Ks due to weather. Luckily, another
Corporate Angel Flight came available out of
OKC tomorrow. They have already called and delayed the take off time so hopefully they will keep that time and fly in.

I know tomorrow I will wake up and thank God for getting me through today, he has carried me several times today. I know he has cradled Mitchel in his lap also. God has sent me several people to comfort and encourage me, thank you all so much.

Please pray that tomorrow will go smoothly and peace will shower over us.

Love to all, Mary

Thursday, December 3, 2009 7:43 PM CST

Where do I begin, I honestly cannot remember what my last updates have been about things have been happening so fast.

We have had many ups and downs the last few days. The doctors have been trying to figure out what treatment plan Mitchel needs to be on.

Dr. Modak told me yesterday that they are looking at the scans and reports again to figure out exactly where the tumor grew from. In his opinion it originated from the brain fluid and traveled through the dura and pushed out towards the bone.

That was confirmed this morning when we went for Mitchel's first radiation treatment. Dr. Wolden walked in and said she had just had a meeting with Dr. Cheung, Kushner, Modak, Kramer and the surgeon Dr. Souweidane and they all agreed that this is a relapse in the brain fluid, which includes the spine fluid.

So here is the treatment plan Dr. Kushner went over with me today.

Spot radiation treatment (boost radiation) to the back of the head where the tumor was removed for 5 treatments.

Starting on Tuesday total cranial-spinal radiation for 10 treatments doing one a day. 5 of those days will also include doing chemo with radiation (irinotecan), that chemo works really well with radiation to the fluid.

Then have a 1 month break

Another 5 days of chemo (irinotecan, through IV and temozolomide,this chemo is oral) This can be done at home.

He will have his counts checked while we wait for his platelets to come up to at least 55,000 or 75,000. When this happens he will have the Ommaya reservoir put in (this will go into his head)to start either the 131 iodine - 3F8 or 8H9. This will consist of one treatment of two injections into the port in his head,and possibly another round of two injections. Total amount of time for this treatment is two weeks for each cycle. (one injection per week)

After this treatment the plan continues to 4 cycles of 3F8, which Mitchel has had before. He had a really good response to this.

And lastly he will have Temozolomide by itself for 5 cycles. This is taken orally and is considered low dose chemo.

I am sure through all of this he will have periodic scans and some transfusions from the effects of chemo.

My head is still trying to grasp all of this, but I am hanging in there. They have a wonderful support system here, the other parents are awesome in giving us strength and support.

Tomorrow they will do his two spot treatment with radiation and also do his simulation for this cranial-spinal radiation to begin next week. Child life will be there for this because it does involve making him a full mask and he will have to have more tatoos put in to mark the spots for the treatments.

Well that's all for now, thank you all for your contined prayers and encouraging words. Also, Mitchel has been receiving alot of letters and he truly appreciates them so much. Thank you!

Love to all,

Mary

PS our target date to get out of here is December 18 or 21 just in time for Christmas. Pray that all goes according to plan and this will happen.

Tuesday, December 1, 2009 3:25 PM CST

Happy Tuesday,

Mitchel had his radiation simulation appt. today, it went pretty well. He had a few rough moments but overall he was the bravest little guy I know.

The simulation was the hardest part of the whole radiation treatment. They had to put three more tatoos on the back of his head to help line up the beams for radiation. One tatoo was at the top of his incision, ouch! He was not happy about that at all. They made him a mask to lay his head into for each treatment, that part was pretty easy, he was just frightened.

His radiation will consists of 14 treatments starting on Thursday morning and he will have two a day,week days only. That puts us being able to come home on next Friday or Saturday, yeah!

I am still waiting to ask the doctors about low dose chemo, this will be done at home.

Thank you to everyone that has sent him a card, he truly enjoys receiving mail. The address here is:

Ronald McDonald House NY
405 E 73rd Street
New York, NY 10021

Rm 1103/MBaughman

Love to all,

Mary

Monday, November 30, 2009 2:35 PM CST

Happy Monday,

We are starting another week here in NY. Mitchel wants to go home so bad but he knows that we have to finsh his appts. first.

He is scheduled to start his radiation simulation tomorrow sometime and then proceed onto ratiation in a few days. The simulation will take a few days to complete. He will be fitted with a mask so they can pinpoint the exact spot to radiate on the back of his head. They will also need to do a special radiation CAT Scan to map out the area.

I am hoping he will start the actual radiation by the end of this week. He will have 14 treatments, doing two a day so that should put us getting home just before Christmas. I got my fingers crossed anyway anything can happen.

He will have his stitches taken out on the 10th of December, he incision looks good and he hasn't complained of it hurting.

Thanks for checking in on us, Love to all, Mary

Saturday, November 28, 2009 12:34 AM CST

Happy Saturday,

I think that is what day it is, all the days are running together, lol.

Mitchel is feeling much better today, yesterday he did not get around much but today he is moving around alot more.

Mike and I are taking frequent walks around the block to keep our sanity, it can get quite boring around here. I think we have visited every store close to here.

Thank you all for your continued prayers and kind words, we know and believe in prayer so much.

Love to all,

Mary

Wednesday, November 25, 2009 7:34 PM CST

The surgery went well they took him around 2:30. We saw Dr. Souweidane about 5:30.

Mitchel is now in the POU (pediatric observation unit) they expect him to get out tomorrow. I did not get to talk with him before I left with Michael back to the Ronald, he was a little fussy with the nurses. He came back from surgery with 3 IVs and a catheter. He is still very sleepy.

Mike is going to stay with him tonight. We are all exhausted we hoping to get a good nights sleep and wake up feeling refreshed.

They told us that he may get out tomorrow just depends on how he feels.

Dr. Souweidane said the tumor was a little harder to get to than they originally thought. It was between the dura and the bone, it was pushing against the bone so he had to remove it and clear out the area pretty good.

Thank you all for your prayers and kind words.

Love to all, Mary

Tuesday, November 24, 2009 6:25 PM CST

Update: Dr Souweidane called last night and said he would get things straightened out this morning. The surgery is back on for today. He will have his CAT scan of the brain and then surgery about 12:00. Thanks for your prayers.


frustrating news:

the surgeon's office just called and something came up and they gave to reschedule the surgery. We have to call in the morning to find out when it will be. Soooooooo we are here in NY with no appts and it is Thanksgiving week.

Mike flew in just for the surgery, but what can we do. It is what it is.

Oh well things could be worse, it is just frustrating.

I will update again when we find out more.

Love to all, Mary

Tuesday, November 24, 2009 6:25 PM CST

Frustrating news:

the surgeon's office just called and something came up and they gave to reschedule the surgery. We have to call in the morning to find out when it will be. Soooooooo we are here in NY with no appts and it is Thanksgiving week.

Mike flew in just for the surgery, but what can we do. It is what it is.

Oh well things could be worse, it is just frustrating.

I will update again when we find out more.

Love to all, Mary

Saturday, November 21, 2009 2:12 PM CST

Happy Saturday, we are relaxing today after yesterdays long day of appts.

Several of you have asked If Mitchel can receive mail and I know he would love to receive mail.

His address here is:

Ronald McDonald House
405 E 73rd Street
New York, NY 10021

Room 1103/M Baughman

Thank you all for your prayers

love to all, Mary

Friday, November 20, 2009 6:33 PM CST

I am so glad this day is coming to an end. It has been very stressful.

He had his CAT scan this morning and that went very well, then we went to MRI and they actually took us a little early. We then went upstairs and waited for his bone marrows, he went in about 12:30. When he came out he was a bear, crying, yelling and kicking. I just put him on the bench and waited to out with him. After he ate a PBJ sandwich he started to turn the corner and become his sweet self again.

We ate lunch and then it was off to Dr. Souweidane's office for a surgery consult. Mitchel was not happy to walk across and down the street for the appt. The surgeon was at another hospital so we had to go over there. He was all smiles when I got him a wheelchair and rolled him over there. He liked it so much he wanted to take it back to Ronald House. He was sad to say goodbye to it but he is now playing and having fun.

We stopped by the store on our way back and I made him a nice dinner. He seems to be doing great now.

Dr. Souweidane's visit went really well, he will be performing the surgery on Wednesday of next week. They will go in to the back of his head and remove the small tumor. It has grown into the bone a little but did not penetrate through to any part of the brain. Because they have to go through some muscles back there he will have a plate put in for the skin to grow over and heal up. It will not be a metal plate that sounds off the alarms at the security, thank goodness.

Mitchel did cry and get under the desk, he was fine at first but I think he got scared about it all and needed to have a break down. They gave him some special cupcakes and he was happy when he left.

The recovery will be pretty simple, just one night in the hospital and after a few days he can start his radiation.

Our goal is to be home before Christmas.

Mike and Michael will be coming out on Monday and staying for a week. Yeah! I need a break :)

Thanks for checking in on us, Love to all,

Mary

Thursday, November 19, 2009 4:11 PM CST

Today has been a long day. We met with Dr. Wolden this morning. I was under the impression we would know a little more but so far we are still waiting on the treatment plan. She did indicate that the tumor growth is more than likely in the back of the head around the dura area, outside the brain. She is not positive because they need to look at the scans more closely with the team and rule out a growth from the brain fluid.

The radiation treatment plan would change greatly if the tumor is in the fluid which runs all down the spinal cord, all of that would have to be radiated. If it is in the back of the head outside the brain it would be a more simple procedure with radiation and the side effects would be much less complicated.

We will meet with the surgeon tomorrow and find out excactly where the spot is and what the plan is.

So far we still do not know when we are coming home but we are hopeful tomorrow we will know something. We do have a Corporate Angel flight going out Monday so if everything goes according to plan we will be home then.

Thanks for checking in,

Love to all,

Mary

Wednesday, November 18, 2009 3:57 PM CST

Today has been a great day. Mitchel and I went to Time Square and visited Toys R Us. It was such a nice day we walked the whole way, stoppping at Central Park and a few other stores along the way. He shopped until he found excactly what he was looking for. He is in to the Imaginext toys, he has a collection of them going I think.

We did hear from Dr. Kushner's office this morning. They gave us the name of ther surgeon here that would be performing the surgery. They will be seeing us next week sometime, I am waiting for them to call back and get something scheduled. According to Dr. Kushner, the surgeon indicated he could remove the tumor.

We are meeting with the Radiologist tomorrow so we should find out if he will have radiation first or surgery.

Thank you all for your kind words and prayers.

Love to all,

Mary

Tuesday, November 17, 2009 7:21 PM CST

Thanks for checking in on us, we made it here in a few short hours. Flying on a corporate jet is so much easier.

There are a few of our old time friends from our treatment days, it was nice to see everyone again.

After checking in we walked down to the store and I made Mitchel his favorite, steak. He is in really good spirits. He was very excited to ride in the jet, they let him go into the cockpit and see everything. The executives there were two of them flying, were very nice. They made sure Mitchel had everything he wanted.

Tomorrow we don't have anything planned, well I should say I don't have anything planned because Mitchel has planned some things for us.

We will update again soon.

Love to all, Mary

Monday, November 16, 2009 10:22 PM CST

Today has been a difficult day. I have spent all day making arrangements to travel back to NY. Tickets are too expensive for purchase so I called Corporate Angels and luckily they have a flight tomorrow out of Oklahoma City.

Mitchel has an appt. with Dr. Wolden, radiologist, on Thursday morning. It will be a consultation meeting to discuss the radiation treatments. They told us today that all the doctors will be in one meeting before any procedure is done so they can look at this together and make the best decision for Mitchel.

Since we are flying in a day early we will have Wednesday free unless something is scheduled. Mike and Michael are flying in on Monday and staying until the next Monday, so we will be together for Thanksgiving.

It is really hard to know how long we will be there, they don't tell you much until they make a final plan. Making travel arrangements is almost impossible when you don't know much. Who knows how Mitchel and I will get home, hopefully there will be another Corporate angel flight available when we need it.

Well, I have been able to pack two suitcases and throw some things together, I really did not expect to leave this early but I am a pretty good packer by now.

Michael cried and cried tonight so we told him he could go with us to OKC and Mike will take him to school later. Mitchel seems to have taken the news pretty good. He is such a trooper.

We will update again from NY, thanks for checking in on us.

Love to all,

Mary

Thursday, November 12, 2009 9:03 PM CST

Finally we got the call, it was bad news but the waiting is over.

Dr. Kushner called us tonight and said it does look like relapse. So far it is an isolated spot to the head and they will begin further testing next week to rule out any other spots.

So far the plan is to do scans, bone marrow biopsies, radiation to the head, surgery to remove and low dose chemo.

I am not sure in what order excactly but we will know more after the test have been completed.

Mitchel and I are going to head out on Sunday and Mike will follow after we have a plan in place.

We are still in shock I think, but it is slowly sinking in.

Mitchel has no idea we will tell him over the weekend.

Thank you all for your continued prayers and kind words,

Love to all,

Mary

Thursday, November 12, 2009 9:37 AM CST

There is also a spot on the MRI in the same place as on the MIBG. It is right above the nose cavity and it is very small.

We are not sure what it is yet, still waiting on the doctors to let us know something. I did receive a copy of the report but I really cannot understand everything is says.

Dr. Kushner emailed me yesterday saying they would like to have the films sent to them. He did not know we had already sent them up there overnight, so he should be receiving them this morning.

This is our first experience with sending films and having to wait, it seems to go faster when you are in the same hospital for everything.

Thank you all for your kind words and support.

Love to all,

Mary

Tuesday, November 10, 2009 2:55 PM CST

Thanks for checking in on us. We are still waiting to hear something.

This morning we left at 6:00 am and got right in to his appt. After filling out paperwork, the nurse stuck him once and went to get another nurse. Luckily the next nurse was the one he had back in July for his CAT Scan, she is very good. It went right in and it was over before he knew it, he still was not a happy camper.

Daddy went in with him this time, I sat in the waiting room with my parents and Michael.

Afterwards we went to breakfast with my parents and had a great time. The boys loved having them there with us.

On the way home Michael fell asleep and after waking him up to go back to school he seemed to tired and we just came home. He went to bed and slept for a while. They both ended up staying home, oh well it won't matter 5 years from now.

So now we wait for the phone to ring, hopefully soon.

Love to all,

Mary

Monday, November 9, 2009 1:39 PM CST

We heard from Dr. Kushner, Mitchel has a faint and small spot that showed up on his head, they have ordered an MRI of his brain.

I had e-mailed Dr. Kushner and within a few minutes he emailed back saying get the MRI just to be sure. I emailed him back and asked him to call at his convenience, within 30 minutes he called. It is so awesome to have a doctor that truly understands how hard it is to wait for a phone call.

Okay, the scan has been scheduled for in the morning, they called while I was typing.

He will not be a happy camper because they will have to put another IV in. I just pray that whoever is doing it will be their best needle nurse and they can get it in the first time. He is also scheduled for a routine pulminary function test next week, they will be checking his lung strength. He has had one before, he just has to blow into a tube several times.

We will keep you all posted as we know. Thank you all for your continued prayers.

Love to all,

Mary

Friday, November 6, 2009 9:30 PM CST

We made it home safe and sound. It is always a long day when we travel from NY, I wish they had direct flights.

Well we haven't heard anything yet, I should hear something next week. We never know when we will hear from the doctors. I have arrived in Dallas and had a voice mail from Dr. Kramer saying Mitchel's scans all looked great, I was shocked to hear something so quick. Usually it is at least a few days.

They did have him do another scan on a different machine, it is one he has not been on before. After his initial scan they moved him to one that is a combo CAT scan as well. They told me it was fairly new so I wasn't sure if it was just part of the routine now. As most of you know your mind starts wondering at the littlest change.

I am just so thankful to be home, Mitchel waisted no time playing with Michael, They are such great friends. Michael greeted me with a huge hug, he missed his momma.

We saw a few friends at the RMH, but mostly everyone there are new since we were there last. They have totally redone the kitchens and the second floor. They finally removed all the carpet and have installed nice wood floors throughout. The dinning room has all new tables and chairs, new cabinetry too. The kitchens have all granite counter tops with center islands that have the big gas stove tops. The appliances are all new, industrial size stainless steel refrigerators and freezers, dishwashers and microwaves. It makes a huge difference I know for alot of people that have to stay there for a long time.

Well thanks for checking in on us,we will update soon.

Love to all,

Mary

Thursday, November 5, 2009 5:39 PM CST

Hello everyone,

We made it here safe and sound last night. All flights were on time, such a relief when you are traveling with kids.

Today we had a long day, we started out at 9:00 heading straight to Starbucks. Mitchel ate his cereal at the Ronald house before we left. We took a cab to Nintendo World and shopped for a while, he found several things he had to have. Then we made our way to the Disney Store and shopped some more. We walked all the way back to the McDonalds by the hospital and we ate lunch, then walked to the hospital for his appointments.

They started him off by putting in that bad IV, that is what he calls it. Luckily we found his old nurse that is wonderful in putting in his IV, considering his history. Little did we know she had moved on and has become a Nurse Practioner, she was happy to come to the IV room and stick him. It went right in with the first try. He wasn't happy at first but after a while he forgot all about it. After his MIBG injection they took it out and he said you know it wasn't that bad afterall. They tried to bump us back to 9:30 for his scan but we were adament about keeping our 8:00 appt because we have a flight to catch, they were very accomodating in giving his time back.

He met with Dr. Sklar and they checked him from head to toe, we will be watching his thyroid levels, he may need a supplement to keep that where it needs to be. Last time it was a little high and when the results come back they will give us a call. Our last appt. was with his NB team and they all could not believe how much he has grown up. He has grown a few inches since July and put on a pound or two. We discussed the fact that he is five years out from diagnosis, they were thrilled. Depending on the scan results tomorrow, they will make the decision of having him continue with the MIBG scan every six months or just do a urine test instead every six months. This is such great news, he would be excited about either one. We should find out next week about that.

We got back to Ronald around 5:30, but we really were not in any hurry, we took our time leaving the hospital. He wanted to play in the playroom for a while, so I just read my book while he played happily. We then went to the cafeteria and he spotted a hot dog and ordered a PB&J, this was all topped off with an ice cream bar. I think he is full at this point.

The couselor here, Mark, is playing fuseball with him right now, he loves to play. We will be leaving bright and early in the morning heading to the hospital and then to the airport.

Thanks for checking in on us, Love to all,

Mary

Tuesday, October 27, 2009 4:21 PM CDT

Happy Tuesday,

Hope everyone is having a great week, we are excited the weather is a little nicer this week. The boys are doing great. Mitchel received his H1N1 flu vaccine last week so we can all breathe a little easier knowing he is somewhat protected from it.

Michael has fully recovered and feels great. He was a little tired for a few days after his fever broke but now seems to be back to his old self.

Mitchel seems to be handling the news of returning to NY pretty good. He knows he will be visiting some of his favorite places while we are there so that helps. I cannot believe we will be leaving in a week. We have enjoyed these 4 months so much, but now it is time to worry again and wonder, could this be the time we get bad news. I know I should not be thinking that but I think it is probably normal.

I will update again once we get to NY and get settled. I hear they are having computer problems in the Ronald house so we will see.

Thank you all for your continued prayers,

Love to all,

Mary

Sunday, October 18, 2009 3:16 PM CDT

Happy Sunday,

Mitchel is doing great! Michael however has spend his entire fall break inside with the H1N1 flu. It started on Wednesday and seems to have ended last Friday night, which was his last fever. He was hit pretty hard and just felt so bad. We took him to the doctor on Thursday and he tested positive, they put him and the rest of us on Tamiflu. We have all had our regular flu shot but now we are definately getting the H1N1 vaccine. Mitchel is at the top of the list for his shot at the pediatricians office, which they should be getting it in this week. However, just to try and speed up the process I will be on the phone in the morning trying to find another city close by that has the vaccine now. If not we will wait for him to get it at his doctors office.

I e-mailed Dr. Kushner and he told us all his pediatric patients were receiving the H1N1 vaccine. That took away any reservations I was having about it.

Today Mike and Mitchel came back from Grandma's, they have been there since Wednesday to keep away from Michael. I have washed my hands so many times and used alchohol to wipe off things my hands are drying out. I am just happy that Michael is feeling better, he was so easy to take care of.

Mitchel and I will be heading to NY soon, November 4 to be exact. We are going to tell him soon, I hope he doesn't get too upset.

Thank you all for your prayers!

Love to all,

Mary

Tuesday, October 13, 2009 11:20 AM CDT

Happy Tuesday,

Fall is officially here, it is chilly out there. This week the boys are excited to have 3 days off for fall break. We have several things planned but we will be home mostly. Tomorrow we are going to the zoo, hopefully if the weather is nice, then Friday we are going to Kansas for a visit to Grandma and Grandpa Bailey. Their cousins will be there and they are excited to see everyone.

Things are going great, Mitchel has been feeing wonderful. He did complain about his head hurting and throat hurting on Satuday, he had a low grade fever, but on Sunday he felt fine and hasn't had any other symptons since. He continues to grow and feel so healthy. Someone asked me the other day if we do some kind of health regimen for him to keep him so healthy. I said no we just let him eat whatever he wants, he has certain things he loves and pretty much sticks to that. I think he makes pretty good choices on his own to have a yogurt or cheese stick for a snack. He does tend to be a picky eater, doensn't like to venture out much.

Michael, however, will try new things. I had some brussel sprouts the other night with dinner and he said let me try one of those. He ate it but politely said I don't want another one, thank you. Mitchel made a face and said no way! He knows what he likes and that is pretty much it.

We are so thankful to have faith in a God that loves us and gives us peace.

Thank you all for your continued prayers,

Love to all,

Mary

Wednesday, September 30, 2009 9:41 AM CDT

Happy Wednesday,

We are celebrating today. It has been 5 years since Mitchel was diagnosed. Sometimes it doesn't seem possible that he has endured so much during his 8 years of life. He has been off treatment coming up on three years now and he continues to thrive.

We are so thankful for all your prayers and encouragement. God has been so faithful in giving us the strength to carry on and continues to give us peace about our journey. We do not know what is ahead for Mitchel but we do know that God will always be with us.

Mitchel is doing so great, he loves school and basically wakes up every morning ready to see what today will bring. He has a goal to not miss any school this semester, he is encouraged by the certificate and Blockbuster coupon he will receive when he reaches his goal. I love to hear him talk about his plans for the future. He continues to make excellent grades in school and takes it very seriously.

Again, thank you all for your contiued prayers.

Love to all,

Mary

Monday, September 21, 2009 9:07 AM CDT

Happy Monday,

We had a wonderful weekend at the lake, the weather was perfect. The boys swam for about one second because the water was so cold. Michael and I went tubing and that was fun but again the water was sooooooo cold.

Both the boys invited me up to their school today for lunch. They are so cute, Michael ordered Sonic and Mitchel ordered McDonalds. What a treat for me to join them at school for lunch.

As usual this will be another busy week with school and sports. Time is just flying by, soon it will be time to get our Halloween decorations out.

We haven't told Mitchel about going to NY in November yet, I think we will tell him about a week before. There is no since in him worrying about it all this time. I have being making a list of things we will do while we are there. Since he will only have one scan that will give us time to do more fun things. I want to try and go to the Serendipity restraurant and have some spectacular desert, I have heard great things about it. Hopefully we will have time to visit Central Park, I love walking through the park, it is so peaceful and beautiful during this time of year. I want to find a Lego store there, he loves buidling things and they should have some legos there that they don't have here.

We are so proud of Mitchel he brough him his mid term grades and they are excellent. A 95% in Math and A 100% in Language/Arts. He is so smart. Michael is doing good too but he struggles with staying focused on his work, which sometimes shows in his grades.

Thanks for checking in on us,

Love to all,

Mary

Friday, September 11, 2009 12:02 AM CDT

TGIF!

This was a short week for us all, can you believe it is the weekend already.

Mitchel started his Karate classes last week and absolutely loves it. He will be getting his Karate clothes, or costume as he calls it, next week and I will take pictures then to post. He is very excited about getting a belt, even though it will be the white one and not the black one. He is still learning about how the belts are to be earned.

Michael also started his tennis lessons and he loves it. We are so glad they are doing different sports, showing their independece from each other.

Mitchel has been feeling so good, he looks terrific. I wish for one day I could erase from my mind the thought of Mitchel having cancer. It has been such a blessing to have him be in such great health but my mind never stops wondering what the future holds. I guess this is normal, some days are better than others.

Please remember a sweet boy and his family in your prayers, Pierce Phillips, they are from Tulsa. He was diagnosed with NB August of last year and they have taken him home on Hospice care. His parents have had to make some really difficult decisions about his care. Mitchel and I met them in NYC last October, they were also going to the hospital there for treatment. It is so unfair, his website is caringbridge.org/visit/piercephillips.

Love to all,

Mary

Monday, September 7, 2009 10:47 PM CDT

Hope everyone had a great Labor Day! We enjoyed ourselves so much. The weather could not have been more perfect, especially if you were at the lake.

The boys played all weekend and truly enjoyed their day off today. Today we just relaxed at home.

Mitchel has been doing much better and seems to be getting over his break downs for now. Mike and I were gone for a little getaway trip for a few days so maybe that triggered something in him that caused all this emotion to come out. Him and Michael cried the night before we left but seemed to get along okay while we were gone. Mitchel even asked Grandma if he could stay a few more days at her house.

Anyway, who knows with kids.

Thanks for checking in on us,

Love to all,

Mary

Monday, August 31, 2009 11:06 AM CDT

Happy Monday,

Hope everyone has a wonderful week. Today started off fine until I took the boys to school, Mitchel had a emotional breakdown and we had to sit in the car in front of the school before going in. He did this same thing one day last week. He seems to be having some emotional trauma issues from everything he has been through. I am not a phsycologists but to me that seems to be what is going on with him. He has been crying alot over nothing, just very sensitive lately.

He says that he feels like he is the only one that has to get the needles and has to be hurt all the time. He hates having to be the one.

Luckily this morning his school counselor noticed we were sitting in the car for a while and came out to talk to Mitchel. She convinced him to come in and they would have some special time together to visit about his feelings. He has bonded with her over the years and was very receptive of her invititation. He dried his tears and went in to school. I felt terrible driving off, but I know it was best to help him get his mind on other things.

I guess dealing with emotions is just another part of this whole cancer world that the children have to go through. He honestly doesn't understand why he feels the way he does.

Please keep Mitchel in your prayers as he learns how to deal with his emotions and understands them.

Love to all,

Mary

Thursday, August 13, 2009 7:12 PM CDT

It's almost TGIF,

We made our reservations for NY this afternoon. We will be traveling on November 4 and return on 6. He will have the MIBG scan and also see Dr. Sklar while we are there. I was trying to make the trip in two days but it was impossible to do because it takes so long to get there.

We won't tell the boys for a while, Michael doesn't know yet because he will be upset when he finds out Mike it going with us this time. Grandma Bailey will be coming to watch Michael while we are gone. He will be excited about that.

We will have some free time while we are there, so I am sure Mike and I can make Mitchel smile by taking him to his favorite store.

We are headed out tomorrow for our family reunion. The boys are exicted.

Love to all,

Mary

Wednesday, August 12, 2009 5:50 PM CDT

Happy Wednesday,

The boys started school today, Mitchel has Ms. Trotter and Michael has Ms. England. Mitchel was already familiar with Ms. Trotter from Pre-K and is very pleased to have her again for 3rd grade. Michael loves having Ms. England for 4th grade. It is so great when your kids love their teachers, I don't think eigher one has ever not liked their teachers.

After thinking long and hard Mike and I have decided to have Mitchel return back to NY for his MIBG scan due in November. We have several reasons for making this decision. The hospital in OKC was terrific, but we did not see a doctor there so all information was communicated through his Oncologist back here and then the information was sent to NY. We just felt like there were too many doctors involved and information could get lost in the shuffle. Mitchel's oncologist here just doesn't feel their machines are adequate for the MIBG scan. Also, we have tried to find a doctor here that would follow him for any late affects, but no one seems to know anything about that. There has been alot of relapse lately and that is always scary, we won't want to take any chances.

I guess we had to try doing the scan here just once so we could have an understanding of how things would work. It helped us make the decision.

I made contact with Dr. Kushner and he said he looked forward to seeing us in November for his next scan. We also are making an appoinment with Dr. Sklar, the late affects doctor while we are there.

Mitchel does not know anything about this yet, we won't be telling him until later.

We are signing Mitchel up for Golf and Michael for tennis lessons. They are both exited to get involved in their sports.

Thanks for checking in,

Love to all,

Mary

Monday, August 3, 2009 10:42 PM CDT

Happy Monday,

We are enjoying our last week before school starts. The boys and I decided to stay at the lake all week and relax, too bad it is so hot now. We went swimming today and the water felt great, at least there was a cool breeze today otherwise it would have been unbearable.

Mitchel has been feeling great. He is looking forward to starting 3rd grade, we still do not know who his teacher is yet but there is probably a letter in the mail box at home by now.

I found out today that two of our friends we met in NY have received some bad news. One is our friend Owen Lee, he has a tumor that returned and is growing at the base of the brain stem, they have only given a few days up to a few weeks to live. He has been dealing with relapse in the head for a while now and they have run out of options, he also has NB. Another dear friend is Ryan Regan, he went through the 3F8 treatments with Mitchel at the same time in NYC. He has been clear for 4 years until a few weeks ago, he started to limp around on his left leg and they ordered an MRI. He has several lesions growing, which caused the limping, so he will have to begin treatment all over again. My heart goes out to their families and I ask that you all lift them up in prayers.

This is something we parents worry about everyday, it is a constant reminder that things could change at any moment. We live by faith knowing God will carry us through whatever we face.

Thank you all for your continued prayers, we ask God for his hand to be over Mitchel and all the warriors fighting this terrible disease.

Love to all,

Mary

Saturday, July 25, 2009 11:16 AM CDT

UPDATE: Monday 7/27 - Mitchel's CAT scan showed no evidence of disease. The MIBG scan did show something in his adrenal gland but the doctors were leaning more towards it not being anything and this confirms it. We won't scan again until November.

Love to all,
Mary

Mitchel had his CAT scan, it took a while to get things going at first. He drank his contrast really well but when it was time for the IV put in it took three sticks. It is so hard to watch him cry and beg for us to just take him home. He has no other place for an IV except in his hand, everywhere else his veins collapse.

The nurses were wonderful, they even let him use a syringe for a squirt gun afterwards and get
them wet. That made him laugh.

So now we wait to hear any news. He will see Dr. Kirkpatrick on Thursday to go over results.


Thanks you all for prayers, God has given us peace and comfort while we go through this.

Love to all, Mary

Friday, July 24, 2009 8:32 AM CDT

Mitchel is scheduled to have a CT scan today at 12:30. We should know something early next week.

Thank you all for prayers, love to all

Mary

Wednesday, July 22, 2009 1:58 PM CDT

Mitchel's scan is showing a some uptake in his kidney area, the scan is being sent overnight to Dr. Kushner.

MIBG Report:

Focal area of uptake in the left renal fossa which could be normal left adrenal gland, if the patient has a history of prior right adrenalectomy for neuroblastoma. Possibility of primary or recurrent tumor cannot be excluded.

Mitchel has never had involvement in his adrenal glands before, his original tumor was in his chest.

There is no evidence of bone marrow uptake.

Everyting else is normal, including his urine test.

Dr. Kushner has ordered a CT scan just to make sure nothing shows up. We are waiting to get that schedule at St. Francis in Tulsa, hopefully they can do it there.

I guess we sit tight and wait for results of the CT before any decisions are made. Easier said than done, as most of you know in the cancer world.

Thank you all for your continued prayers and support!

Mitchel does not know anything about this, we will not tell him until we know for sure what it is.

Love to all,

Mary

Tuesday, July 21, 2009 4:23 PM CDT

Thanks for checking in, we don't have scan results but his VMA, HVA came back well within normal range. This is a urine test the doctors use to detect any cancer cells.

VMA - 6
HVA - 9

I did call the hospital in Oklahma City today but have not heard back yet, so we should know something soon.

Love to all,

Mary

Tuesday, July 14, 2009 10:22 AM CDT

Funny how things can change, we were on our way this morning to Oklahoma City and the nurse called to tell us the isotope for the MIBG injection did not come in this morning so all appts have to be rescheduled. We were about an hour into our trip. So we turned around and will try again tomorrow. The boys were disappointed about not going to the waterpark today but they have something to look forward to tomorrow.

On the way home Mitchel's best friend called and invited us out to swim this afternoon. That perked them right up and they are happy again.

Mike and I both know to count our blessings in every situation, God continues to give us strength and courage to continue down this difficult journey.

We will update again when we know something new.

Love to all,

Mary

Monday, July 13, 2009 9:31 AM CDT

Happy Monday,

We are back home from the lake, the boys had a wonderful time. Several of us moms met up with the kids and stayed the whole week, it was so much fun for the boys. Since it was so hot we spend most of our time boating, out on the water it never seemed that hot. The boys talked me into tubing with them and I am a little tired and soar, but it did it. I can't keep up with their energy.

Tomorrow morning we are leaving for Oklahoma city, Mitchel will have his MIBG injection in the morning and then we will head to White Water Bay waterpark for the rest of the day. His scan is scheduled for Wednesday morning, after that we will head to Tulsa for his Oncology appointment at St. Francis with Dr. Kirkpatrick. He is his original doctor that Mitchel started out with in the beginning. Then we wait for the results, not sure how this particular hospital does there scans so we will be learning as we go through this process. So far everyone seems very nice on the phone and very accomodating. Since this is a Children's Hospital the nuclear medicine department will be for kids only, which is always a much better experience for him.

Mitchel has had a few breakdowns about going, but our plans for the waterpark has really helped him. From what I understand he will not have an IV put in just a small needle for the injection. We will find out tomorrow I guess.

Thank you all for your continued prayers and kind words. We are so humbled by the support we have, especially for Mitchel, he doesn't deserve any of this.

Love to all,

Mary

Monday, July 6, 2009 10:42 AM CDT

Good Morning,

Sorry for the lack of updates, but no news is usually good news. We have been enjoying our summer so much. It has been so busy around here, the boys have plans for me to take them somewhere everyday, I can hardly keep up.

Next week we are taking Mitchel to Oklahoma City for his MIBG scan, injection on Tuesday and scan on Wednesday. He has had a few breakdowns about going but overall he seems to be in better spirits, I am sure it is because he is not going to NY this time and there will not be any bone marrows performed or IV's put it. The injection will be done through a small needle and then taken out immediately. We are going to spend the night in Oklahoma City to make a little vacation getaway out of it, taking the boys to Wet-N-Wild water park while we are there. That seemed to help Mitchel be exited about going.

We are leaving this afternoon to finish out our week at the lake. It is so peaceful there and the boys have friends they love to play with.

We will update again when we have the results,

Love to all,

Mary

Tuesday, June 23, 2009 9:24 PM CDT

Hello everyone,

It has been a while since we updated. Mitchel is doing great! He and Michael are enjoying their summer so much. Michael has been sick with a virus for the last couple of days but other than that we are all fine. We are hoping Mitchel does not get it now.

It has been so wonderful to have this nice long break, it gives our minds and souls a break from the cancer world. Every once in a while Mitchel will ask a question or two about the past, but doesn't dwell on it.

Mitchel is scheduled to have his MIBG scan on July 15 on Oklahoma City. We will drive down the day before for his injection and then return on Wednesday for the actual scan. We are a little anxious about going to a new place but I am sure everything will be just fine. Mitchel will be glad to know they will not need to put in a IV for his injection but just insert a butterfly needle to inject they isotope and then take it out. He hated getting the IV's.

We will do his urine VMA, HVA test in Tulsa with his oncologist around the same time.

Thanks for checking in with us,

Love to all,

Mary

Thursday, May 28, 2009 8:38 AM CDT

Good morning,

Thanks for checking in on us. We had a wonderful Memorial day weekend. It was so relaxing, the boys played all day and fell in bed at night.

We are having no problem getting into our summer schedule. The boys love having me be with them all day, I know some day that will change as they get older and become teenagers so I am soaking it all up now.

We continue to praise God for Mitchel's good health. He is our little miracle. We will be going for scans soon, nothing is scheduled yet. He is thrilled to only have to do one scan.

Both boys have dental appointments on Monday, we are hoping for no cavities. They have been working really hard on brushing their teeth without having me to remind them.

Thank you all so much for your continued prayers and kind words.

Love to all,

Mary

Monday, May 18, 2009 10:40 PM CDT

I just looked at my last update and could not believe it was from April 28. Wow! Time is flying by so quickly.

This week will be very busy, the boys are out of school for the summer on Friday. They are very excited and ready for our summer vacation to begin. The school have alot of exciting things planned this week for the kids. Both of their classes are going to the park this week for some fun in the sun.

We finally are starting to see some sunshine after a long month of rain. The tornado sirens went off last week, we have had some really bad thunderstorms.

Mitchel has been feeling great and looks great. We have made contact with the Hospital in Oklahoma City and we should have an appointment soon for him MIBG scan. We have been talking about pushing it back to the middle of July instead of doing it in June. Mike and I think he should have one month of vacation before we put him through the needle in his arm thing again. That is the plan for now anyway.

We will be spending the next few weeks at the lake to kick off our summer, the boys are excited.

Thanks for checking in on us, Love to all,

Mary

Tuesday, April 28, 2009 10:01 PM CDT

The news we have been waiting for!

We did hear from Dr. Kushner this evening and he suggested that Mitchel continue with only a MIBG scan and urine tests, and we can do this at home. No more bone marrow biopsies, CAT scans or MRI's. I am just amazed and in disbelief we are not traveling to NY next week. This is awesome news!

Mitchel smiled from ear to ear and is so so happy!

I will call his oncologist from here to schedule the MIBG scan. Since we don't have to travel far it will probably be sometime later in May.

Thank you all for your continued prayers and support.

Love to all,

Mary

Tuesday, April 28, 2009 4:23 PM CDT

Thanks for checking on us, Mitchel has completely recovered from the virus he had last week. He started feeling better by Thursday and returned to school.

The boys had a wonderful weekend at Grandma's, we missed them so much but enjoyed our time alone.

I am not thrilled about going to NY next week, especially with all the swine flu break outs there. So far, according to the news there have been several hundred cases there, particularly with school children. They have even closed down several schools. I have e-mailed Dr. Kushner and asked if we should reschedule or do his scans here. I am taking this outbreak seriously and traveling to a City that has many known cases reported, not to mention traveling through a airport where there are so many people is not a good idea.

We will see what Dr. Kushner says, Mike and I will make our decision soon.

Love to all,

Mary

Monday, April 20, 2009 11:53 AM CDT

Happy Monday,

The boys had a wonderful birthday party this weekend. They were all smiles, I will post pic's soon. Mitchel was starting to come down with a fever by Saturday afternoon, we could tell he was starting to slow down. After giving him motrin he kept on going until 9:00 pm. All of his cousins were there, he just loves having his family all in one place.

Yesterday he seemed a little worse, he has been running a fever of about 101, but with a dose of tylenol he perks right up. This morning he came in about 7:00 am and I did not have to take his temperature, his head felt hot. There is a virus going around where the kids have fevers for about 4 days and then they seem to get better. He does have a little stuffy nose now.

We are hoping Michael does not get it, Mike and I are planning our 17 year anniversary trip this weekend. But usually they end up passing it around so we will have to wait and see. I am just glad Mitchel has it now and not when we are trying to fly out to NY in a few weeks.

Thanks for checking in on us, love to all,

Mary

Thursday, April 9, 2009 9:40 AM CDT

Thanks for checking in on us, Mitchel has been feeling great. However, last week I took him to see his doctor, he was complaining about his chest hurting everytime he coughed or sneezed. The pain was right under his rib cage pretty high up, he kept telling us it was hurting. Dr. Bumpus ordered a chest xray and we returned back to her office and looked at it with her. She and the radiologist did not see anything on the x-ray. So who will ever know what the pain was from, after the x-ray we have not heard another word about it. He says there is no more pain, I guess it is better to be safe and go ahead and do the x-ray. With his history it is hard not to get all worked up and begin to think of everything it could be.

We have had so many of our friends relapse. One scan shows clear and then 3 months later their scans show relapse. No signs of anything being wrong. This disease can be so sneaky, it leaves us with the constant fear that our next visit could be the one that changes everything.

We just found out one of his friends relapsed last week after going to NY for scans, he was doing so well and now he will be starting chemo soon. He was on the same schedule as Mitchel for the 3F8, going every 2 weeks for his 2 week treatment. We spent alot of time with them. Please keep Mason in your prayers as his family once again revisits the chemo world.

Mitchel and I will be leaving May 4 for a 2 night trip for his scans. We are all anxious and a little scared, especially when we know relapse can happen at any time and to anyone. There doesn't seem to be anything that anyone can do to keep it from happening, no medicine to take or treatment, you just wait and see.

We did not ask for this life, but we know the only way to deal with it is through our belief and trust in Jesus the son of God. He continues to give us daily strength and peace as we journey down this path.

Love to all,

Mary

Monday, March 30, 2009 4:09 PM CDT

Hi Everyone,

I know is has been along time since we updated, but things are going really well. Mitchel has been feeling wonderful and it is so easy to just been totally consumed with the good life and not remember to update his site.

Caringbridge has been working on the website to improve them and I know it was down on Saturday for a while but it should be up and running now. I don't think anything changed and you still enter the website the same way.

We have ventured to the lake a few weekends and have experienced some pretty decent weather. We are all anxious to shed our winter coats and soak up some sun. The boys are doing really well and are excited to be getting out for summer break soon, May 21 to be exact.

We will be travelling back to NY on May 4-6, it will be here before we know it.

Thanks for checking in on us, Love to all,

Mary

Sunday, March 1, 2009 2:07 PM CST

It has been a while since I have updated, things are going good. We are staying busy as we wait for this weather to warm up a bit to enjoy the outdoors a little more.

Last week Mitchel had a miny melt down and wanted to miss school a few days. He missed Wednesday and on Friday he seemed a little run down and tired. He was not his happy self. I took him to school late after we had a few minutes to talk about some things, while I was at his school I ran into his counselor and I told her about some things Mitchel seemed to be struggling with. She called me later that day and told me she had a chance to talk to Mitchel, he really opened up about his feelings. He wanted some answers about why he has to go through this time and time again. He really hates going to NY and having all the tests done, especially the needle part. He seems very concerned about having to do this forever, he continues to talk about when he is 20 and still having to go through this. Mike and I picked both boys up from school on Friday and we had a great talk with Mitchel. He really shared some of this concerns with us and seemed relieved to get some answers to his questions. Mike and I have not told him alot about what the cancer is, we thought it would be best to wait until he came to us and started asking questions. I guess that time is here. Mike and I both cried later and we both continue to ask God for wisdom and strength in answering all of Mitchel's quesitons.

Mitchel has strongly suggested that Daddy go with us to NY this next time, so Mike is going. Then we have to deal with Michael feeling left out, what a hard place for us to be in. I know we will find the answers in all this, we must continue to lean on our faith and trust God for our wisdom. We have been struggling with the question of having his scans done in Tulsa, but we always go back to NY, I guess the fear of not having the same radiologists read the scans is a big concern. It seems to be a very tough decision. We have full confidence in the doctors in Tulsa, but the fear is still there. We will be praying for answers to all this.

Mike took the boys to the YMCA, they are going to swim. Mitchel loves to swim and cannot wait until the summer.

Thank you for checking in on us, Love to all,

Mary

Friday, February 13, 2009 4:01 PM CST

Results are in: Clear! Clear! Clear!!!

We are so happy. Dr. Kushner told us that we would scan again in another 3-4 months and then look at scanning every 6 months. This would be so wonderful and I think we are mentally ready to make that change. I know Mitchel is.

I went to the boys school today and enjoyed seeing them have fun at the Valentine partys. They got so much candy, extra brushing for a while I guess.

Thank you all for your continued prayers. We want to send a special thanks to Linda and her family for sending the boys their Valentines card with the $10.00 gift card. They are both excited about spending it. Mitchel has been into Legos for a while and he can actually sit for hours putting them together so I am sure he will be buying something like that. Michael has been saving his money for a while, but I know he wants the new Spongebob movie that is coming out soon.

We will return to NY in May sometime, before our summer break begins.

Love to all,

Mary

Thursday, February 12, 2009 9:37 AM CST

We made it home safe and sound last night. Our flight out of NY was early but unfortunately our flight out of Dallas that we thought would be early was delayed so we made it home a little late than expected.

Mitchel came out of recovery from his bone marrows kicking and crying, can't say I blame him, I just held him and told him it would be okay. He finally calmed down and wanted to go catch out plane. He is such a trooper, coming out of anesthesia and having the energy to fly home, I would have looked for the nearest bed and stayed in it for a few days.

We gave him the choice to go to school or not today, he chose to go and actually got up before me. He was fully dressed and before I made it into the kitchen he was already making his own lunch. He had put a juice in his lunch box and had two slices of bread on the counter ready to spread the peanut butter. This is one of those moments you cherish forever.

Michael gave me the biggest hug at the airport when he saw us, he said he missed me so much. Actually this was the first time he was so sad about me leaving. The night before he cried a little and said please don't go, talk about tearing at my heart. He had a good time with dad and seemed better as the days past.

Well we haven't heard anything yet, I seem more anxious this time, I have already e-mailed Dr. Kushner asking for an update. We usually just wait and go on with life, when we hear something we hear it. I guess this time for some reason I feel different, probably just my nerves getting to me.

Thanks for checking in on us, we will update later.

Love to all,

Mary

Tuesday, February 10, 2009 2:23 PM CST

One more scan for the day and then we are done until tomorrow. This morning was a nightmare, Mitchel was kicking his way out of the IV room. After being stuck twice the nurse assured me she had the most experience and there really wasn't any reason to have someone else do it, after another try she let someone else do it and in it went. Mitchel was so upset having to sit there while the nurses assured him it will be okay. To him being stuck 4 times is not okay! The nurse that usually puts in his IV was not there this morning and the two nurses that were in there I have never seen before, but they kept telling me they have been there the longest and have the most experience. This happens everytime someone new tries to put in his IV, we tell them it is hard and you really have to look good for his veins, they roll and blow easily, but do they listen no. After the third try I think the nurse was ready to let someone else do it. Oh well, it is now over and he is fine. He made sure to tell everyone he got stuck 4 times, he told doctors, nurses, friends and strangers, anyone that would listen.

We are hoping his MRI this afternoon will be over in time for us to join the others for the skating with the NY Rangers Hockey team. It will be down at the Rockefellar Center, they will be eating with the kids and then teaching them how to skate. Mitchel is excited and hopeful he will get to go.

I am already thinking about coming home tomorrow, we will be ready to get home. This trip has been very easy, except for this morning, there are a few of his friends here this time and they have been able to play in the playroom. We met a family from Tulsa that are here with their son, he also has Neuroblastoma and is 18 months old. I was able to visit with his parents last night, they graduated from high school with my sister. Please remember little Pierce in your prayers.

Well thanks for checking in on us, we will be home soon.

Love to all,

Mary

Monday, February 9, 2009 3:48 PM CST

We made it in to NY 2 hours early this time. One of our smoothest trips yet. Our flight to Chicago was early so we caught an early flight to NY.

We have already been to the toy store and the deli on the corner, now we are in the playroom. Mitchel was all smiles to see a ping pong table down here. Tomorrow night they are taking the families to skate with the Greats, NY York Rangers, but I am not sure if we can go. Mitchel has a 5:00 pm MRI, but we will see how it will work out.

Not much else to report, the weather here is very nice, sunny and 45. Alot warmer that I thought it would be, thank goodness since you walk everywhere.

Thanks for checking in on us, Love to all,

Mary

Tuesday, January 27, 2009 4:36 PM CST

As you can see I finally changed the picture at the top of the webpage. I just love the other picture but Mitchel has changed so much that I thought is was time to do it. It was hard to make that decision but I am glad I did.

We decided to take a little family vacation over the weekend. We went to Dallas and stayed at the Great Wolf Lodge, it was so much fun. The boys enjoyed every minute of it. We have been there before and have visisted the ones in Kansas City and Poconos, PA. So far this one is our favorite.

We drove home last night in this terrible icy weather. Today and tomorrow the kids are out of school, I guess we are snowed in or iced in. Everything is covered with ice and it is snowing right now. The boys are enjoying their extended vacation by not going to school.

Thanks for checking in on us, Love to all,

Mary

Thursday, January 22, 2009 3:54 PM CST

This morning Mitchel has a singing program at school, unfortunately this is the only picture I got of him. He was not happy about standing around with everyone taking pictures. Oh well, I least we have one.

Things are going great, the boys are getting along so great in school. They both have awesome teachers again this year.

Not much else to share, we will be updating again soon, thanks for checking on us.

Love to all,

Mary

Thursday, January 15, 2009 2:27 PM CST

I just looked at the last journal entry I could not believe it was from December 11. Where does the time go. Things are going great, the boys are back in school after the xmas break. I miss those days of staying up late and spending the whole day playing with the kids, but it is nice to be back to our schedules.

Mitchel has mentioned a few times about our upcoming trip to NY. He doesn't seem to mind it, but I know he is not looking forward to getting an IV put in. Enough about that for now.

We had a few snow flurries today, it is bitter cold out there. The boys are anxious to use their snow boards they got for Xmas, we may have to go to the snow this year.

Thank you for checking in on us, things are going great!

Love to all, Mary

Thursday, December 11, 2008 11:02 AM CST

Sorry for the delayed updates, it is so wonderful to just live life normal and not worry so much about everything.

Last week Mitchel went to the dentist to have his cavity filled and he was so brave. I was concerned he was going to need sedation. But he managed with just the Nitrus, (laughing gas). He just sat in the chair and enjoyed watching Tom and Jerry. He has not complained once about anything teeth hurting, what a relief. It is so nice to know he can go the dentist and have his teeth worked on just like everyone else now.

This week he went for his pulminary function test, EKG and Echo. He did great, after his appointments we went to visit Dr. Kirkpatrick, his original doctor that diagnosed him 4 years ago. They could not believe how much Mitchel has grown up. We had not seen them since December of 06, Dr. Kirkpatrick was so impressed at how great Mitchel looked. Of course he was very encouraged to see how far he has come in his battle against Neuroblastoma.

Mitchel's next appointment will not be until February 10, 11 in NY when we return for scans. This has been a wonderful break, we are finally beginning to feel normal and find ourselves moving farther and farther away from all the worry and stress of the possibility of relapse. It has been a long 4 years and we continue to take one day at a time. I have to be honest and acknowledge the fact that the worry never completely goes away, but I learn everyday how to overcome it and move forward. My faith in God, knowing he is in complete control gives me such peace and strength everyday.

We are getting ready for Christmas, it will be here before we know it. The boys are making their wish lists, it changes everyday. Mitchel frequently surfs the internet looking for different things and then writes it down for us, he is so organized.

Thank you all for your continued prayers and kind words.

Love to all,

Mary

Tuesday, November 25, 2008 12:08 AM CST

Well Mitchel's dental appt. was cancelled, his dentist got sick and could not come into the office. We were all ready to try the appt. without sedation, Mitchel was convinced he could do it. I guess we will have to get him mentally ready again for the next appt.

Thank you for your prayers!

Love to all,

Mary

Saturday, November 22, 2008 8:47 PM CST

Hello everyone,

Sorry I have not updated in so long, we have been so busy these days. Time is flying by too quickly, I cannot believe Thanksgiving is next week.

We have scheduled our next trip to NY, it will be February 9-11. Mitchel will have CAT scan, MIBG, Bone Marrows and a new thing they are doing every time instead of every other time is the brain MRI. When the scheduler told me he was scheduled for that I reminded her he just had one. I guess it is part of the routine scans now. Mitchel doesn't mind doing the MRI he just sleeps, I just hate subjecting him to all the radiation in the scans.

He is scheduled to do a EKG, Pulminary Function test and Pediatric Echo here at home in a few weeks. This is the test we cancelled in NY because Mitchel was just too tired to take it that day. After the tests he will see his original oncologists that diagnosed him from the beginning. It will be a little strange seeing him again, probably bring back alot of memories.

Also, Mitchel is scheduled to have a cavity filled on Monday. I am not looking forward to the appt. The dentists wants to sedate him for the procedure to keep Mitchel calm, he tends to wave his hands around while the dentist is working. As most of you know Mitchel does not do well with drinking any type of medicine, but I guess it is either that or have it done at the hospital and put in a IV. Please pray he will sit still and we can get this done quickly. They told me the relaxing medicine is demoral so it should work if we can just get him to drink it. I think I am more worried than he is.

I will update again after his appt.

Thank you for checking in on us, Love to all,

Mary

Thursday, October 23, 2008 9:40 AM CDT

We are still enjoying the sweet words "NED", No Evidence of Disease. Mitchel has been feeling great and everyone tells him how great he looks.

Yesterday both the boys got their flu shots, Mitchel was so unhappy about it. He put up a struggle and I can't blame him after all he has been through. I don't think he felt it because I put numbing cream on his arm it was all the thinking about it that got him all worked up. Michael was talking when he got his, he did not even flinch.

They are out of school tomorrow and we are headed to the lake for our last weekend there for a while. The weather is changing and getting colder so we will be hanging out at home until spring. The boys are excited about going this weekend, we are having a Halloween party there. Next weekend we will be spending with Mike's parents for Halloween, we go there every year. Since Halloween falls on a Friday we get to stay for the weekend.

I have not called to confirm out next trip to NY yet, for some reason I am not motivated. Probably next week I will get it done.

Thanks for checking in on us,

Love to all,

Mary

Monday, October 13, 2008 3:22 PM CDT

Hello everyone,

Dr. Kushner wrote and said scans all clear no signs of NB. We are celebrating and thanking our Jesus, son for God for this wonderful news.

We will have another 4 months home, the choice was given to do a 3 or 4 month break, so we are taking the longer break.

Thank you all for your prayers and kind words.

A special thank you Linda at Crown Pack for sending the boys their Halloween treats, you are so kind and thoughtful.

Love to all,

Mary

Saturday, October 11, 2008 8:50 PM CDT

we made it home last around 11:30. It was a long day but today is a new day and we are moving forward. No word yet on his scans, hopefully we will here something the first of next week.

Mitchel is feeling great, like nothing happened. He is so strong and courageous. We are both so happy to be home.

Love to all, Mary

Thursday, October 9, 2008 6:10 AM CDT

UPDATE: 7:50 pm NY time

We are all done for the day, Mitchel is playing in the playroom and we both got our favorite food tonight. He did so good for the MRI, it is amazing how he just goes to sleep with earplugs in and his head taped down to keep him from moving. I sat in there with him and fell asleep in a chair, I guess we are both exhausted. We will arrive back at the hospital in the morning for 8:00 am scan and wait for his bone marrows. We will update again when we know something or we arrive back home. God is good and we know today we were lifted up and given extra strength and courage to carry on through the day.

Update: 3:40 pm NY time
We are almost through with our day of Dr's visits and scans. We were handed our schedule this morning and they had added an appt. at 12:30 for a EKG and pulminary test on top of what we already had scheduled. Mitchel was already crying when we got up there after having been stuck twice for a IV, CAT Scan and two doctor visits so needless to say I just told them to cancel the appt. and we would do that part of the testing at home. Mitchel was sitting on the floor at the check out desk crying and saying he just wanted to go home, I knew if we were to complete our day of testing something was going to have to change. The doctor had no problem scheduling the tests to be done in Tulsa for next week, that was a relief. We left the hospital for some much needed fresh air and headed down to Mcdonalds before his 2:00 appt, he slowly started to perk up and after he ate we headed to the park across the street from the hospital. He was all smiles when we went to his next appt, this was a blessing to me because when your child is in that state of mind you just want to find a place to go and scream. So now we are back at the RMH waiting to return for our 5:00 MRI appt. Our schedule would not have been that bad but we needed to see the new Long-Term follow up doctor. The visit with the doctor was somewhat depressing, going over all the late affects of the chemo and radiation Mitchel has had. Not really what I wanted to talk about but I guess they have to keep track and study their little bodies as they grow and are off treatment. Dr. Sklar is also a Endocrinologist, a doctor that studies hormones, which will be beneficial in knowing how Mitchel will be affected in the long run. According to his measurements today he is above average for his leg growth, but below average in his trunk growth, chest area, spine. It could affect his overall height in the long run but after studying his chart they said he should be around 5'11" to 6'0 as an adult if he continues to grow like he is now. He currently is in the 72f his growth chart which does not surprise us because all of his pants are too short from last year. They also suggested we have him tested with a specialist for a Neurocognitive evaluation in the future, this will tell us if he needs help with things like processing information properly and his fine motor skills which could be affected in the future. So far I believe he is not showing any signs of this according to his school. His future appt. with Dr. Sklar will be 8 months from now, they will just be keeping an eye on blood work and his growth. One of the blood tests they did today that is new was checking his vitamen D and thyroid since the past treatment could have affected that, they will be calling us on Tuesday with those results.

As we arrived this morning I went to the scheduler for tomorrow bone marrow biopsy and she told me they are completely full tomorrow for the surgeries and Mitchel would be scheduled in later in the day instead of the morning, which is usually when he goes in. With this delay I knew there was no way we could make our flight out at 3:00 pm so I called AA and they graciously changed our reservation to leave out at 6:00 pm at no charge. Thank goodness that part worked out I needed a break. We will not arrive back home until 10:20 but as long as we get home we don't care what time it is.

Love to all,

Mary


We made it in around 4:00 pm yesterday. Thankfully we got a room at RMD. After getting settled into our room we went to Mitchel's favorite store, Nintendo World at Rockelfellar Center, and we walked the whole way. The weather was really nice. We are getting ready for our llong day today, I will update later.
Thanks for checking, Mary

Tuesday, October 7, 2008 3:15 PM CDT

Hello everyone,

We are slowly but surely packing as we get ready to leave for NY in the morning.

I spoke with my friend this morning who will be in NY as well with her son for the same test as Mitchel and she told me they were not able to stay at the RMH because they had not rooms available for them. I got a little worried so I called to see if we had a room and our social worker indicated that we did. What a relief, I wasn't sure if we did or not. Evidently the house is very busy right now and they have alot of people coming in at once. We are so thankful to have a room. Our social worker said she would let us know if something changes, so I will be checking my phone for messages tomorrow. They are really good about finding you another place at a hotel if the RMH is full.

One more thing to worry about this time I guess. Oh well, I cannot change it so whatever happens happens.

Thanks for checking in, we will keep everyone posted as we know the tests results.

Mitchel's schedule is:

Thursday: 8:00 Dr. office, drink contrast and put in IV, 10:00 am CAT SCan, 11:30 Dr Skylar appt, 2:00 MIBG injection for scan on Friday and 5:00 MRI of the brain.

Friday: 8:00 MIBG scan and then bone marrows around 10:00, then it is off to the airport to return home.

Love to all,

Mary

Monday, September 29, 2008 9:59 AM CDT

Happy Monday,

I finally added new pics, as you can see we had a wonderful weekend. Mitchel is feeling much better, but now Michael is sick. He has a soar throat and low fever.
He smiled when I told him this morning he better get back in bed since he is not feeling well, he loves having mommy all to himself.

The days are just flying by and it won't be long before heading back to NY for scans. Mitchel has been talking about it a little, he is really being mature about the whole thing. I am the one who is having a hard time, just the thought about going wears me out. He looks and feels so good I just hate that small chance something will show up on the scans. This is the time that I really start to get nervous and my mind races with so many upsetting thoughts about everything.

We believe God will once again carry us through this time and give us the strength to handle whatever comes our way. I cannot imagine our lives without having faith in God, knowing he is always there for us.

Thank you all for checking in on us, please pray for our home to have peace over the next week as we prepare to return to NY.

Love to all,

Mary

Monday, September 22, 2008 10:25 AM CDT

Sorry I have not updated in a while, we have been so busy since school has started. The boys are finally settling in with their new schedules and enjoying school so much.

Mitchel is fighting off a virus of some kind, we are going to the doctor this morning for a check up. He has been running a low grade fever and has a little cough. There is alot of things going around school, so I am sure he has picked up something from there.

We did have a wonderful weekend at the lake, it was very low key. The weather was fabulous and it looks like all week will be the same weather wise.

We are counting down the days for us to return to NY, we have 15 days left. Mitchel seems to be in good spirits about going, hopefully that won't change as get closer to leaving.

Thanks for checking in on us,

Love to all,

Mary

Tuesday, September 2, 2008 1:44 PM CDT

Happy Tuesday,

We had another wonderful weekend at the lake. I enjoyed watching the boys have so much fun, their favorite game at the lake is flashlight tag, all their friends run around at night with their flashlights trying to sneak up on one another. We never hear a peep out of them once they go to sleep, they are so tired at night from all their running around.

We still have about 6 more weeks before we have to return to NY for Mitchel's scans. He hasn't talked about it in a while so I hope he can have these weeks to just enjoy life and not worry about returning yet.

I have been hesitant with putting him on a daily dose of Singulair for his allergies from a fear of it triggering his cancer to start growing again. I hate worrying about it, but he has been doing so well and has had clear scans for so long. His allergies are not really that bad, he just wakes up on the morning with a stuffy nose until midmorning and then it seems to go away. I am probably worrying for nothing.

Thanks for checking on us,

Love to all,

Mary

Thursday, August 28, 2008 9:45 AM CDT

Good morning,

The boys are back in school and we are finally on our new schedule. They both argued that going to bed early was for babies, but in the end we somehow convinced them it is in their best interest to have plenty of sleep. It must have been the early morning wake up calls that made up their minds.

We are heading to the lake this weekend for a long three day stay, the boys are excited to have that extra day to play and swim. They have so many friends there, I honestly think they would move there full time if we would let them.

Mitchel had several nose bleeds last weekend so on Monday I took him to the doctor for a CBC and checked his platelet count. It was around 250,000 which is usually where it stays, so that was a huge relief. His allergies have been bothering him alot lately and we agreed with the doctor that the nose bleeds were from that. He has not had once since Saturday. As you can imagine all kinds of thoughts were running around in my head, I was so nervous.

That is pretty much all that is going on here, thanks for checking in on us.

Love to all,

Mary

Tuesday, August 12, 2008 1:49 PM CDT

I have been thinking about updating for quite some time now but just never seem to get around to it. Our days have been filled with so much joy and laughter, we truly have experienced a wonderful summer break.

The boys start back to school tomorrow and they are both excited. We will go and meet their new teachers tonight at the open house. Their school was also remodeled during the summer break and we are anxious to see all the new colors and rooms.

Mitchel feels wonderful and everyone that sees him says he looks so healthy. I took him in the other day to have the tubes checked that are in his ears, we had left his ear plugs at the lake. Before the nurse starting making his new pair of ear plugs I had her look inside his ear to see if the tubes were still in there. The tubes were still in his ears but had fallen out of the surgical hole so the nurse said it was time to stop wearing the ear plugs. Thank goodness, trying to keep track of those ear plugs for almost two years has been difficult at times.

Thank you all for checking in on us, we appreciate all your continued prayers.

Love to all,

Mary

Wednesday, July 23, 2008 10:13 PM CDT

Happy Wednesday,

This has been a great week so far, the kids and I have been at the lake all week. Actually we have been here since last wednesday. Even though it has been a little hot we have had a nice breeze being so close to the water. Mitchel looks and feels great, he is so happy and loves life so much.

I cannot believe they will be starting school soon, Aug 13 is their first day. They are both excited about starting school. Mitchel will be in 2nd grade and Michael will be in 3rd, it seems like yesterday that they were still in diapers.

I am so thankful for these wonderful moments we will cherish forever. Mitchel has come a long way from his first day of diagnosis, I cannot believe it will be 4 years in October.

Thanks for checking in on us, love to all,

Mary

Tuesday, July 15, 2008 9:22 PM CDT

Our summer is going by so fast, I cannot believe it is half way through July now. The boys are enjoying every minute of this summer, my favorite part is being able to spend so much time with them, I love having them around all the time.

We got our tickets today to return to NY in October, that still seems so far from now. It will be the week before they get out for fall break so it will be nice to have some time off after returning back from NY, we are hoping to squeeze in a mini vacation then.

Mitchel got over his ear infection pretty quickly and feels wonderful. He looks so good too.

Not much else to report, thanks for checking in on us.

Love to all,

Mary

Saturday, July 5, 2008 10:58 PM CDT

Happy 4th everyone,

We had a wonderful time yesterday, the boys literally lit off hundreds of fireworks, smokebombs, snap pops, rockets and their favorite parachutes. They were covered from head to toe with firework dust. Mitchel wanted to know tonight when they could shoot off fireworks again, I told him next July 4th, I was surprised he wasn't tired of it after yesterday.

We have been enjoying being at the lake so much. The boys have made some new friends and it is so much fun to watch them all play together. Thursday Mitchel complained about his ear hurting so I took him to the clinic here at the lake and sure enough he has a ear infection in one ear. After the doctor visit he felt much better, we put some numbing drops in and he started an antibiotic for 7 days.

Our daughter is coming up tomorrow with her husband and son, the boys are so excited to see them. We have had alot of company here at the lake so far and we hope to have more, the boys enjoy seeing everyone so much.

I can't believe we have already made our appointment for his next scans in NYC. We will be returning October 8-10 for a CAT scan, MIBG scan and MRI of the brain and bone marrows. Mitchel will also be seen by their long term doctor while we are there. October 4 will be Mitchel's 4 years since diagnosis. During those four years time has gone by fast at times and really, really slow at times. It seems strange to think back to the beginning when we were just finding out what neuroblastoma is.

Dr. Kushner said we could take a break no longer than 4 months, we I timed it exactly at 4 months. October seems so far from now, it is weird to think it is just around the corner.

We continue to give thanks to God and praise Jesus his son for allowing us to see Mitchel so healthy and happy.

Love to all,

Mary

Monday, June 23, 2008 1:17 PM CDT

Happy Monday,

We have been enjoying our time at the lake so much, we are officially lake rats.

The boys are getting excited about July 4th, every year we go to KS and spend the day with Mike's family. The kids shoot off fireworks all day and night, Papa Bud makes sure of that.

Mitchel is feeing wonderful, he still needs breathing treatments every once in a while. Last night during the night he starting couphing and felt like he needed one. It is amazing how much better he can breathe after having one of the treatments.

We played hard yesterday, the boys enjoyed tubing and swimming with their cousin, Cecilia.

We continue to praise God for his amazing love, we are so thankful to know and experience Jesus in our hearts everyday.

Love to all,

Mary

Thursday, June 12, 2008 8:39 AM CDT

We made it home safe and sound, a little tired after sitting in Dallas airport for 3 hours.

The best news is when we arrived in Dallas I had a voice message on my phone, it was from Dr. Kramer and she said CAT scan and MIBG look clear. What a relief that was, I am so glad she called it just lifted a huge rock off my shoulders.

We will schedule our next scans for about 4 1/2 months from now, hopefully I have to check with Dr. Kushner first. For now we are going to enjoy the rest of the summer and give thanks everyday for Mitchel's miracle.

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

Mary

Tuesday, June 10, 2008 12:09 AM CDT

Finally I made it to a computer to update. Things are going good so far, we made it in yesterday around 4:30. We got all checked in to Ronald and took a cab down to Mitchel's favorite place, Outback Steak house, then we walked down and got some ice cream. When we returned back to Ronald they were doing a special projects for dads and Mitchel joined right in.

This morning we arrived at the hospital at 8:00 and he received his IV and contrast to drink for his first scan. After his scan we took a cab down to Nintendo World and then walked down to TGIF for lunch. We are now waiting to take the bus down to the hospital again for his 2:00 appointment. Then we are done for the day.

It is 96 degrees and no wind, can you believe it, back home we have been having tornado winds and here nothing just hot, hot, hot. We have been taking a cab everywhere because it is impossible for us to breathe in this heat. I did not bring his stroller again this time so Mitchel gets really tired quick.

We will be home tomorrow night and we are already ready to leave this place. Our friends are here from Michigan, Dawson and Kelly so we have been able to visit with them and catch up on how they are doing. Dawson has grown so much just like Mitchel.

I have seen so many new faces here for 3F8, it is hard to believe we were in that same position not too long ago.

I probably won't update again until we get home,

Love to all,

Mary

Monday, June 2, 2008 9:38 PM CDT

Happy Monday,

Thanks for checking in on us, we are enjoying our summer so far. I added some new pic's of the boys from today, we had the whole lake to ourselves it seemed, it was awesome. They went tubing, cliff diving and alot of swimming. We will go home tomorrow, both the boys have a baseball game and Mitchel has a party afterwards where he will receive his trophy for having a winning season. Michael was dissappointed his league does not have parties and hand out trophies but I guess when they get older the don't do that.

We will go home for two nights and return to the lake on Thursday for our last hoora before returning to NY. Mitchel is counting down the days, I am just letting the time go by peacefully, I have even given up wearing a watch up here. We just do things when we feel like it.

Mitchel looks and feels great, we are so thankful that we have had so much time together as a family to create memories, this break between scans has been his longest yet and we are hoping to have another 4 month break.

We appreciate all your continued prayers and kind words,

Love to all,

Mary

Monday, May 26, 2008 6:30 PM CDT

Happy Memorial Day,

We are still at the lake, Mitchel has felt wonderful and seems to be back to 100ow. He finished his antibiotic and has not had any symptons of pneumonia at all. We did return to his doctor for a follow up and she suggested a allergy medicine called singulear for him to try. It seems that he wakes up often with a stopped up nose but by noon he is all clear and will stay that way until he wakes up again the next morning. With all this wind we have been having alot of people are complaining of their allergies bothering them. His doctor gave me a months worth of chewable 5 mg pills for him to try out and also wrote a prescription if I felt they were helping. I have not started him on it yet because he seems to be getting better for now.

We had a wonderful weekend boating and playing in the water here at the lake. It is really starting to get warm outside and the lake water is warming up fast. The boys don't seem to mind at all how cold the water is they still jump in and swim around.

thanks for checking in, love to all,
Mary

Friday, May 16, 2008 9:26 AM CDT

Happy Friday,

Mitchel is doing much better, he must have had a touch of pneumonia and we caught it just in time.

He is still on his antibiotic for a few more days but I stopped the breathing treatments because he is breathing 100% better, he did start to complain of his head hurting too after his treatments. Thank you all for your prayers.

He went back to school yesterday but came home with his head hurting, so we will see what today brings. He is going through a clingy stage right now and wants to be with me all the time. This should be a happy thing for me but as a mother of a cancer patient my mind starts to take off in many directions and go through a number of what if's. I checked on him last night and his head and hair was sweaty and has been the last week, I know he has had this happen last year and nothing came from it, it just went away after a week or so. When he was first diagnosed his head would sweat so much his pillow would be completely wet, so as you can imagine I can't help but worry a little.

June 9th is creeping up slowly but surely, I don't want to go back and have his scans done, I am so afraid right now at what they will show. I know my faith will carry me on but that is how I feel today, right now.

On a happy note we are going to the lake this afternoon, the weather is going to be beautiful.

Thanks for checking in on us, Love to all,

Mary

Tuesday, May 13, 2008 1:37 PM CDT

How quickly things can change, Mitchel started having breathing problems last night and this morning he was breathing quickly and very shallow. We got him to Dr. Bumpus and after examining him and xrays it showed he has pneumonia. His oxygen level was around 89, which is quite low. He got two shots of Rocephin, and believe me he screamed so loud, that stuff hurts. He will continue this afternoon and tonight with breathing treatments and go back to the doctor tomorrow. We are so thankful he was not admitted into the hospital.

After his appointment we went to Hastings for a prize for being so good, he barely made through the breathing treatment at the Dr's office, then we came home and he ate a little something. He is now sleeping, which is very unusual for him, he never takes naps.

Anyway, he will hopefully be feeing better tomorrow.

Thanks for checking in on us, keep Mitchel in your prayers.

Love to all,

Mary

Monday, May 12, 2008 6:16 PM CDT

Happy Monday,

We had a wonderful day yesterday, the kids bought me a wind spinner and I love it. They were so cute picking out what to get me.

Mitchel fell alseep tonight while I was fixing dinner, he wore himself out over the weekend, playing at the lake. We did not come home until this morning, I dropped them off at school on our way in to town. They met some new friends at the lake that were there camping with their families and then Grandma Bailey came yesterday for the afternoon.

I keep forgetting to take pictures of our weekend getaway, I will have to do that this weekend for sure. My mother is coming in from San Diego and the boys are exited to see her. We have not seen her since we spent two weeks with her last summer in CA, it will be good to see her again.

Thanks for checking in on us,

Love to all,

Mary

Wednesday, May 7, 2008 10:26 AM CDT

Happy Wednesday,

Thanks for checking in on us, things are going great. We continue to praise God for Mitchel's health, he has been feeling so wonderful.

They both have games this week and then we are heading for the lake on Friday. Our weekend getaways have been so uplifting to us all, we love having that family time to just hang out and bond together. Everynight we have a fire and make smores, it is funny how we all have a different way of making them. Mitchel likes his with only the marshmellow just a little brown and Michael likes his with chocolate and marshmellow just like me, except I like to burn my marshmellows.

Last night we all snuggled in the bottom bunk of their room and watched a movie, I made runs to the kitchen for popcorn and drinks, it was a very special evening. Mike and I are so proud of them both.

We are praying for our friend Bronson this week, who is in NY having all of his scans, he was in NY with Mitchel last time and they really hit it off. Dr. Kushner gives us the option to return in 3-4 months for scans and we always take the longer break instead of exactly 3 months apart, we would take a longer break if we could. Hopefully, in the near future we will have that option.

Love to all,

Mary

Thursday, May 1, 2008 2:30 PM CDT

Happy Thursday,

We all are counting down for the weekend, we will be leaving for the lake after Michael's game tomorrow night. The boys are so excited to be going this time, last weekend it was just Mike and I and they missed going so much.

Everyone is doing well, the boys are counting down the days until school is out, it won't be long for that. It will be bittersweet because Mitchel and I will be returning to NY for his scans shortly after he gets out of school. He will have two weeks of no school before we go so that will help.

Thanks for checking in on us,

Love to all,

Mary

Monday, April 28, 2008 9:33 AM CDT

Happy Monday,

We had a weekend of mixed emotions. It started off great, Mike and I had such a good time together and then Saturday night at 2:00 am I received a call from my dad, I could tell from his voice something was wrong. Their house caught on fire and they lost everything, he was sitting in his truck watching the fire not being able to do anything about it. They live out in the country on 1000 acres and the fire department that showed up was not equipped to handle a fire this big. We are all thankful that they made it out safely, it was literally within minutes that their lives were saved. Thank goodness for smoke detectors that is what saved them, they woke up and could barely breath from all the smoke.

I drove down to see them yesterday, about 2 hours away, and Mike went to pick up the kids. It was a very emotional time for my family, we were devasted by what we saw.

Please keep my parents in your prayers as they begin to heal and sort through their emotions.

The kids had a wonderful time at Grandma's and Papa's, they did not have any problems falling asleep last night.

Mitchel has a game tonight, he is so cute in his uniform. We are so thankful that he is feeing so good these days.

Love to all,

Mary

Friday, April 25, 2008 12:14 AM CDT

Please lift up the Meglar family, their son Austin passed away last night with his family by his side. Austin and Mitchel often played together at the Ronald House last year while they were both in NY receiving treatments. Mitchel still talks about how much fun he had with Austin.

There have been so many of his friends pass away in the last year, it just breaks our hearts.

Thank you all for your continued love and encouraging word.

Love to all,

Mary

Wednesday, April 23, 2008 10:39 AM CDT

Happy Wednesday,

I have added some new pictures from Mitchel's opening pitch for the baseball season. My friend took them with a much better camera.

Things are going great, the boys are busy every night this week with baseball and then they are off to Grandma Bailey's for a weekend with her. Mike and I are celebrating our 16th year of marriage on Friday, after the boys game on Friday we will head to the lake for a relaxing weekend. I already know we will be missing the boys so much, probably more than they miss us.

Have a wonderful rest of the week,

Love to all,

Mary

Sunday, April 20, 2008 4:56 PM CDT

Happy Sunday,

As you can see from the new pictures we had a wonderful birthday party for the boys. The weather was beautiful, we were surprised since the weather has been so cold lately, but the temperature was around 78 degrees all day. We decided this year to have everyone at the lake for the party, we had about 19 kids there and they all had a great time.

The boys are having another party tonight hosted by some of our friends from church. We cannot wait to see everyone.

We have a very busy week with baseball, every night the boys have a game. It will make the week go by faster I guess, we are looking forward to all the games.

Thank you for checking in on us, have a great week.

Love to all,

Mary

Saturday, April 12, 2008 6:03 PM CDT

GO BIG RED MACHINES!!!! #8 BAUGHMAN

We were all freezing out there this morning for the opening day of the boys baseball. It was all worth it to see them be so excited about playing in their first game.

They both have games next week and are ready to go.

I will have some pictures of Mitchel pitching the first pitch of the season, another mom took pictures while I video taped it. I haven't figured out how to do both at the same time yet. Mike was on the field with Mitchel receiving his perfect pitch.

Is is ever going to warm up, I can't believe this is April and we are still dressing for winter, Crazy!

Thanks for checking in on us,

Love to all,

Mary

Thursday, April 10, 2008 7:03 PM CDT

Happy Thursday,

I cannot believe another week has gone by already. Our evenings have been busy with the boys in baseball practice, they seem to really enjoy it so far.

Unfortunately Michael has come down with strep throat, I feel so bad for him, his little throat is really red. I took him to the doctor today and sure enough the strep test came back positive. Luckily we found out early enough and he will get both doses of his antibiotics in today so hopefully by tomorrow this time he will feel much better. Mitchel is feeling great, thank goodness, I know strep throat is very contagious. It is impossible to keep them apart.

Saturday is their big opening day for baseball season. Mitchel was asked this week to pitch the first pitch of opening season. I almost started to cry when they asked us about it. When we told Mitchel he smiled and said yes I can do that, so we will see. There will be lots of eyes staring at him and he can sometimes feel very shy. I can't wait to see the pictures of them in their uniforms.

I was reminded today of our upcoming trip back to NY in June. AA has already changed our schedule around and put us on another flight spending 4 hours in the St. Louis airport returning home. It took me 1 hour to reach a live person to get things switched around again. By the way things are going in the airline industry it will probably change again. Since we started our trips to NY almost 3 years ago the flights have really been trimmed back, not too many choices these days and they are always packed full. Oh well, I am not going to borrow trouble and get all worried about it now, June is far away from now.

Thanks for checking in, I will add new photos of their opening day on Saturday.

Love to all,

Mary

Saturday, April 5, 2008 6:42 PM CDT

Happy Saturday,

We are living it up at the lake, the weather today was absolutely perfect. We all got a little sunshine on our faces. I added a few pic's from todays fun, I also added some new pic's from Mitchel's program at school, he received the Citizenship award. We were all so proud of him!

Well thanks for checking in on us, check back soon for updates.

Love to all,

Mary

Monday, March 31, 2008 11:55 AM CDT

Happy Monday,

Sorry I have not updated in so long, we have been enjoying our time off from doctors and hospitals. These days Mitchel rarely mentions anything about NY or his treatments. Instead he is thinking about school, baseball and going to the lake. We have been going to the lake every weekend and it has been wonderful. The boys love it there, they both love being outdoors running around throwing rocks into the lake and picking up sticks for the campfire. It is great family time.

The new pictures show Mitchel with our dog Sandy and his stuff animal dog, Hugs, from school. Each child has a turn bringing it home and they right a journal about what they did with hugs during their time. He loves it when it is his turn with Hugs.

Their baseball begins tonight, Mike and I will be going in opposite directions taking them to their practice. The weather is not so good right now, it has been storming all day, we will have to wait and see if they have their practice tonight or night.

Mitchel has not complained of feeling sick in so long it has been wonderful. He looks great and his teacher told us he is doing so good in school. He has mastered several things that the teacher has not began to teach yet, way to go Mitchel!!!!

Michael is going great in school too, he loves going and has such a uplifting attitude every morning. He is a wonderful big brother, the other day Mitchel had a splinter in his foot and was not happy about me removing it. Michael came up next to Mitchel and said I no it hurts just squeeze my hand as hard as you want if it begins to hurt. My heart melted right then and there, what a sweetie.

We are so blessed to be where we are with Mitchel, we pray everyday and thank God for his many blessings.

Thanks for checking in on us,

Love to all,
Mary

Monday, March 10, 2008 4:16 PM CDT

Happy Monday,

Just wanted to wish everyone a Happy week! The weather here is really nice, we are actually getting outsite to enjoy it a little.

We thank God everyday for Mitchel's good health, he looks so good and feels wonderful.

Thanks for checking in on us,

Love to all,

Mary

Wednesday, March 5, 2008 10:25 AM CST

Happy Wednesday,

All is well in the Baughman household. We are so thankful how well Mitchel is feeling, we give thanks and praise to our God who gives us all miracles.

Mitchel has not asked to stay home at all in a long time. He loves school and is growing up so fast. Both boys will be having their tryouts for softball this weekend, they are both ready and very excited to start.

Their Spring Break is right around the corner and we are ready. Hopefully the weather will stay nice. Micheal's birthday is coming up soon as is Mitchel's. They have been picking out things they want, it changes everyday. I was listening in on their conversation this morning about what they wanted for their birthdays, it was so cute.

Thanks for checking in on us,

Love to all,

Mary

Monday, February 25, 2008 7:39 PM CST

After Mitchel came down with the stomach bug we all got it over the weekend. Michael and Mike had the worst of it throwing up and making quick trips to the bathroom. We all started feeling better on Sunday and made it to church. It wasn't until today that we made back to our regular schedule. Thank goodness that is over.

The boys will be starting baseball soon, they are very excited. Hopefully the weather will warm up a bit for that.

Thanks for checking in on us, overall we are doing great!

Love to all,

Mary

Thursday, February 21, 2008 11:29 AM CST

The boys and I are snuggled in today, school was cancelled because of the icy weather. They both were very excited about school being out today. Mitchel has come down with the stomach bug, bless his heart he was up alot last night going to the bathroom. He ran a little fever, but overall still felt pretty good. Thank goodness he is not throwing up, he absolutely hates that.

Thank you for checking in on us, we appreciate all your prayers.

Love to all,

Mary

Tuesday, February 12, 2008 9:22 AM CST

This is Dr. Kushner's response to my e-mail:


scans look great, BM biopsies show no NB

Great news! Thank you for your prayers!

Love to all,

Mary

Monday, February 11, 2008 4:56 PM CST

I just sent an e-mail to Dr. Kushner asking if there is any word on his scans. So far we have not heard a peep, we always say no news is good news, right? We are hoping that is the case.

Mitchel is feeing great, he seems to recooperate so quickly, I feel like he is a little tired, but he nevers complains.

We will keep you posted as we know something,

Love to all,

Mary

Tuesday, February 5, 2008 3:13 PM CST

Anyone interested in making a donation into Mitchel's bucket raising funds for Band of Parents can do so at:

Ranch Heights Elementary School
5100 SE David Dr.
Bartlesville, OK 74006
Attn: Rhonda Willcox

Please make checks payable to:

Ranch Heights PTO


We made it home last night around 10:00 pm, what a long two days it has been. We are both very tired.

I don't know if any of you caught the morning news on Fox 23 in Tulsa, but you would have seen Mitchel and I in their studios. Despite being extremely tired we woke up and headed out about 7:00 am for an interview on live TV this morning. The TV station picked up the article from the Bartlesville newspaper about Mitchel wanting to raise money for Band of Parents. We are hoping that alot of people saw it and will be sending in their donations soon, it ends Feb 15.

Mitchel did great until he saw the set where we were to do the interview, I think the cameras scared him so I had to go on by myself as he hid behind the cameras. He was smiling and talking to the guy who was operating the camera. It was fun!

We have not heard anything from the doctors yet, no news is good news we hope. Mitchel did awesome yesterday for his final scan and bone marrow biopsies. He is so brave. There has not been one time when we have flown that someone makes a comment on how good he behaved on the plane. He has raked up enough miles to be a professional travelar.

We will let you all know as soon as we hear from the doctors. Thank you for your prayers,

Love to all,
Mary

Thursday, January 31, 2008 10:51 AM CST

Happy Thursday,

We woke up this morning to a wonderful site, snow everywhere. Of course the first question is do we have school today? So far the schools have not been cancelled, we are expecting a few more inches by tonight.

The boys school, Ranch Heights, is currently having a fundraiser in Mitchel's honor for the Band of Parents foundation to help raise money for Neuroblastoma research and it is going really well. The children are bringing all their loose change to put in a big bucket. The district heard about it and they are going to join in to include the other schools. We are so happy to see such an interest in helping BoP raise money.

The hospital called and gave us Mitchel's schedule for next week.

Monday - we arrive PM
Tuesday - 10:30am MRI - head and orbitz
12:30pm CAT Scan - head, chest, pelvis
2:00 - MIBG injection
Wednesday - 8:00am - MIBG Scan - full body scan
? am - bone marrows - all four hips
2:55 pm - plane leaves.

I am going to contact Corporate Angels and ask if they have any flights for Wednesday coming back to Tulsa. We have not had much luck in the past but it is worth a shot.

Mitchel is doing better regarding his anxiety issues about returning back to NY. His counselor at school made a great suggestion, she recommended buying Mitchel a camera so he could take pictures of his trip. She also encouraged him to bring the pictures to school and share all about his trip to NY. He is excited about doing that and even asked last night how many more days before he can use his camera. Thank you Rhonda for your great suggestion.

Thank you all for your continued prayers and loving words of support. We truly are blessed to be surrounded by so many who care.

Love to all,

Mary

Sunday, January 27, 2008 7:13 PM CST

Thanks for checking in on us. We are still enjoying life to the fullest everyday. Mitchel has been feeling so great, lot's of energy. He has been going to school consistently and only missing here and there every once in a while.

We will be returning back to NY for scans a week from tomorrow. He did have a hard going to sleep the other night, he was thinking about his upcoming trip to NY and all that he will have to go through. He was crying about getting his IV put in and having the bone marrow biopsy done. He knows it is going to hurt, his past experiences keep that on his mind alot. The best I could do is just talk him through it and keep reminding him it has to be done to keep him better. He still does not understand why he has to go through this, I have tried to explain it to him many times but he continues to question the purpose of all the pain he has to go through. Sometimes I feel like such a failure in being able to explain to my child why he has to go through so much. I guess since we are coming up on another trip to NY soon it is bringing out all those feelings again.

Of course all the worrying is starting to creep in as we will be waiting for the results of the tests.

The good news is that we still have a week before having to return. yeah!

Again thanks for checking in on us, we truly appreciate all your prayers.

Love to all,

Mary

Monday, January 14, 2008 6:25 PM CST

Happy Monday,

We had a terrific weekend relaxing at home. Mitchel has been feeling wonderful, lots of energy.

Dr. Kushner did schedule Mitchel for an MRI while we are there in Feb, somehow we squeezed it in an already tight schedule. I am not complaining, it will keep us so busy the time will fly by.

Hope everyone has a wonderful week,

Love to all,
Mary

Friday, January 11, 2008 10:52 AM CST

TGIF everyone,

Life is good here at the Baughman house. Mitchel is feeling great and looks really good. I have been trying to keep the thought of returning back to NY far away but I beginning to feel the worrying thoughts start to creep in. Every once in a while Mitchel mentions something about returning, he often asks about the white milk, that is the anesthesia medicine that makes him very sleepy. He likes the feeling when he goes out, but when he wakes up he knows he is very grumpy. He is getting older and asking so many more questions. Sometimes I am prepared and sometimes not, I often pray for God to give me the answers because I am clueless and don't know how to answer his question.

Mitchel's school will be conducting a fundraiser in honor of Mitchel the end of this month, it will be specifically for Neuroblastoma research. They will be raising the funds for BandofParents Foundation. All monies raised will help develop a new treatment that is currently in the beginning stages of being made available to patients, Mitchel could be one of those patients, That is exciting!

If anyone of you that is reading this would like to participate in making a donation you can visit the bandofparents website at www.bandofparents.org.

Have a wonderful weekend!

Love to all,
Mary

Monday, January 7, 2008 12:24 AM CST

Happy Monday,

All is well in the Baughman house. We had a wonderful timed visiting Mike's sister and brother-in-law Saturday. The boys love playing outside, the weather was perfect for that. Speaking of weather I cannot believe how warm it is here, you don't even need a coat just a short sleeve shirt. We know the cold will be coming again soon.

I e-mailed Dr. Kushner last night because I got to looking at Mitchel's past schedule and his last MRI of the brain was back in August. I thought patients were surpose to have one every other time for scans, somehow this has been overlooked I guess. Dr. Kushner e-mailed me back this morning stating they will try and get one scheduled for our next visit which is coming up soon. There has been alot of relapse in the brain so I thought this was something the doctors were watching very closely, maybe I have worried about it for nothing. I think if there was something there it would show up on the MIBG. I called this morning and talked with the scheduler, she already had called the MRI department and they are trying to get him in while we are there in Feb. If not we may have to stay longer but hopefully it will work out, I know Mitchel will be wanting to get home right away, especially since Mike is not going.

Mitchel had a coughing spell last night and wanting to take Tylenol, so I gave him a little bit, that seemed to calm him down. At night he sometimes coughs just as he lays down to sleep, I think it is drainage going down his throat, no fever or anything just coughing and the next day he seems to feel fine. Tylenol always seems to work for him.

Not much else going on, we are enjoying just being together as a family.

Love to all,

Mary

Friday, January 4, 2008 5:05 PM CST

We had a wonderful time in Texas last weekend. Mike and I enjoyed watching the boys swim and have so much fun.

We are traveling again tomorrow for the day to visit Mike's sister and brother-in-law. They live in Cushing, Oklahoma, the boys are excited to see their niece Cecilia, she is 2.

After school today Mitchel said his head hurt, I could immediately feel myself getting all worried. I have been asking him every 30 minutes if his head still hurts and he says no and then yes, so I am not sure what to think of it. I know everyone can get a headache every once in a while for no reason at all, but when he says his head hurts I cannot help but start to worry. Every once in a while he will say his leg hurts or arm and then nothing for weeks. Not sure what to think about that, growing pains I guess. As long as his scans keep coming back clear I should relax.

We have a championship playoff everynight on the Wii, so far Mitchel is in the lead with ping pong. We have all been having so much fun playing the Wii, it is a great family game.

We thank God everyday for Mitchel's life and continue to focus on how good he is feeling now. Thank you all for your continued prayers and special words.

Love to all,
Mary

Wednesday, December 26, 2007 8:29 PM CST

We had a wonderful Christmas, the boys have been playing their Wii games non stop. They also got alot of board games, I think we have played them all.

This weekend we are traveling to Texas to visit the new Great Wolf Lodge they just finished building. We have been to the ones in Kansas City and PA, they are wonderful. The indoor water slides keep everyone going all day long. The boys are excited to pull out their swim suits.

We are looking forward to a Happy, Healthy New Year in 2008.

Thanks for checking in on us,
Love, Mary

Friday, December 21, 2007 11:17 AM CST

What a beautiful day it turned out to be today. The boys are home enjoying the beginning of their long Christmas break. We made pancakes this morning and enjoyed a nice sit down breakfast without trying to hurry out the door. Everymorning around here they both wrap up in a blanket and drag it around the house. As usual they were both wrapped in a blanket eating their breakfast. They got a new blanket from Grandma Sherry that is so cozy, it is a down feather quilt material, blue with snowman all over it. Everyday they take turns using it. Thank you Grandma Sherry, they are doing so well with sharing it. They also have enjoyed the big bucket of popcorn, they love to take it in their room and snack on it while they play.

They started playing Uno right away this morning. I love to watch them play, they sometimes make up rules as they go along.

Mitchel has been fighting off a cold or sinus infection. No fever just alot of yucky stuff in his eyes and nose. He stayed home a few days last week and this week, but still keeps on going. I could tell this morning he was so glad to be home with me.

We are truly blessed to see Mitchel grow and be so healthy right now. Thank you all for your continued prayers.

He has 220 ornaments on his giving tree,YEAH! Thank you all so much.

Love to all,
Mary

Friday, December 14, 2007 10:32 AM CST

Making all these changes to Mitchel's website reminded me of when I first set it up. It seems like so long ago, everything was still so new to us. We have come such a long way, Mitchel has endured so much over the last three years, he deserves this break from needles, medicine, ouchies and so many other things he did not like at all.

We have so much to be thankful for, this long break has helped us all in so many ways. I booked Mitchel's and my tickets back to NY for February already, the tickets were pretty pricey that Mike and Michael will be staying here this time. We will only be gone Monday, Tuesday and return on Wedensday afternoon. We still have 1 1/2 months at home before returning yeah!

The boys are getting so excited about Christmas, Mitchel's wish list keeps getting longer and longer, he made another one yesterday with items I know do not exist because I have looked on the internet. He wants nintendo pull back cars in characters that they do not make, he has all the ones they do make. He kept saying but Santa can get them right?, he knows where they are. I kept reminding him he already turned in his list and we can save this one for next year, I guess I need to write a letter to Nintendo asking them to get busy and make some more cars.

We are traveling this weekend to Dallas to visit Mike's Dad and stepmom. The boys are very excited to see them. Luckily we are traveling south not north and will miss the snow.

Have a wonderful weekend and be safe. Thank you all for your continued prayers!

Love to all,

Mary

PS Mitchel now has 196 ornaments on his giving tree. Thank you for your donations! www.lunchforlife.org/mitchelbaughman

Tuesday, December 11, 2007 11:25 AM CST

Thanks for checking in on us. We have been one of the 600,000 oklahomans without power these last few days. The power has actually been off and on, mostly off, since Sunday.

We are still counting our blessing, since we have a gas hot water tank we have had hot water and our home has not been that cold, only this morning did Mitchel complain of being cold. They both crawled in our bed this morning for some great snuggling. When I told them I was going to take a shower they were excited to get the battery operated candles and set them up in the bathroom for me, it is so cute how they take care of mom. I cooked their pancakes on a little grill in the garage, the boys loved it. They think it is pretty cool having fires in the fire place and roasting hot dogs and making smores. We ate out last night since it was almost impossible to see what we were cooking, the power did come on for about two hours just before going to bed, we all did a happy dance and recharged everything for the next outage.

Mike and I have encouraged the kids to be thankful in times like these, to focus on the good and still give thanks. We are especially grateful for our health and how good Mitchel looks and feels.

For right now we are hoping the lights can stay on for good this time, we will see.

Love to all,

Mary

Tuesday, December 4, 2007 8:55 PM CST

UPDATE: Mitchel now has 160 ornaments on his giving tree! HE IS SO EXCITED, THANK YOU!

Happy Tuesday,

What a wonderful evening we had tonight. One of our favorite movies was on, Rudolph. Mitchel and I snuggled in his blanket as we watched it, it was great. He has been feeling so great these days.

We are so thankful seeing him have a normal healthy life. God is good!

The boys are getting into bed now so I better go and help tuck them in.

Love to all,

Mary

Saturday, December 1, 2007 8:26 PM CST

Thanks for checking in on us, we are all doing great! The boys are getting so excited about Christmas. The countdown begins today, December 1.

Mitchel has been feeling wonderful, he is so thankful we do not have to return to NY until Feb.

We are scheduled to return Feb 4-6 for scans. We continue to pray for clear scans once again and another 3 month break.

Love to all,

Mary

Tuesday, November 13, 2007 8:16 PM CST

11/27

Sorry I have not updated in a while, we have been enjoying normal life living. Our Thanksigiving was wonderful, Mitchel loves getting together with the whole family. He has special bonds with so many of his relatives. We are now getting ready for x-mas, the boys are asking for everything. They will love what Santa has for them this year, it has been at the top of their list for quite some time now. Wiiiiiiiiiiiiiii! of course.
By the way, last time we checked Mitchel had 79 bulbs on his tree, he was so excited, Thank you all for giving to such a great cause. Please tell all your friends about Mitchel's Tree.

=======================================

It is that time of year again and Mitchel has another Giving Tree that needs ALOT of ornaments. This year if everyone uses his giving tree code he will receive an extra ornament for each persons donation. Last year he barely made it to 500 and this year we want to light up more than one tree.

You can visit his Giving Tree website at: www.lunchforlife.org/mitchelbaughman

HIS GIVING TREE CODE IS: 26609

All monies goes for Neuroblastoma research. When Mitchel's tree reaches 500 ornaments his name will put in a drawing for prizes and a chance to win a trip to see Mickey Mouse.

Love to all,

Mary

Monday, November 12, 2007 11:06 AM CST

Dr Kushner e-mailed me this morning and said no evidence of disease showing on MIBG or CAT scan. Bone marrows are not in yet.

We are celebrating this good news. Mitchel is so happy and feeling terrific.

We will schedule his next scans in 3-4 months according to Dr. Kushners e-mail. Yeah!

We look forward to a very long break, our longest yet.

Thank you all for your continued prayers! Big prayers, Big God!

Love to all,

Mary

Wednesday, November 7, 2007 7:19 PM CST

We made it here safe and sound. Our flight out of Chicago was cancelled but we were put on another one just 45 minutes late so it was not too bad.

Mitchel was very sad when we left this morning he did not want to go, but eventually he forgot all about being sad and before we knew it his great personality was back. Smiling and running around the airport.

We have seen several families this time that we know, as we arrived everyone was lining up to go to the Christmas Spectacular with the Rockets on Broadway. I wanted to go really bad but Mitchel and Dad wanted no part of that. So we checked in, went to the store and ordered our food. Tomorrow night we signed up to go to the Tavern on the Green restaurant in Central Park to eat and they will have carriage rides and face painting for the kids.

We have an early day at the clinic tomorrow, starting at 8:30 for blood work, they will put Mitchel's IV in and then his first scan is at 10:20 (CAT Scan). The MIBG injection is next for tomorrow at 1:45, then we have the rest of the day to play and enjoy NYC. Mitchel has a few places he wants to go.

Please continue to pray for us as we wait anxiously for the results of this weeks tests.

Love to all,

Mary

Monday, November 5, 2007 4:08 PM CST

Hello everyone,

I find less and less time to update Mitchel's website. The reason is so wonderful, our lives are filled with so many great things that keep us busy. The boys are busy doing boy stuff and our lives seem to be pretty normal for the time being. Michael temporarily got rid of his ear infection, we revisited the doctor last week to find out both of his ears are infected again.

Mitchel is feeling wonderful. Every so often he will complain of something hurting, leg, head, arm and maybe his foot but after a little while we won't here anything else about it. He has been attending school regularly, he has only missed a few days so far for not feeling good.

Mike and I are trying not to focus on returning back to NY this week, but since we are human I guess worrying a little is expected. Mitchel will have scans on Thursday and Friday and then we will return Friday night. We know that our world can be turned upside down in a matter of hours,we have experienced this so many times in the past. As we embrace each other and pray that all scans will show clear, we slowly get ready to return for his 3 month check up.

Mitchel seems to be fine about returning, he enjoys visiting all his favorites places and he loves having mom and dad all to himself. He does miss Michael alot and when we go shopping he always makes sure we buy something for Michael too. Michael will have Grandma Bailey all to himself and he loves that.

I will be updating again from NY, thank you all for your prayers. Please continue to pray for clear scans!

Love to all,

Mary

Sunday, October 28, 2007 6:50 PM CDT

Happy Sunday,

We had the celebration party this weekend for Mitchel and Michael. They were all smiles, opening presents and eating their spiderman cake. Mitchel especially was looking forward to it all week.

The boys are back to their old selves, whatever virus they had has now gone. We are all getting our flu shots Tuesday, the boys don't know yet, thank goodness we still have numbing cream left over.

After school on Wednesday we are going to Grandma Bailey's for Halloween, the boys are very excited about it. Neodesha, KS is the perfect town to celebrate Halloween, the whole town gets involved and makes it fun for the kids. We have stayed here before and just a handful of kids come by, it is not the same as it was when I was a kid.

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

Love to all,

Mary

Sunday, October 21, 2007 10:23 PM CDT

I can't believe it is the start of another week, where is this month going.

We spent several days at Papa's and Gigi's, the kids had such a fun time playing with their cousin. They rode horses, help feed the goats and played all day. Since is was so windy the boys did not get to play outside alot, Mitchel is fighting a cough and Michael started out with some kind of viral infection which turned into a ear infection. He still has a cough too. Michael had a fever for 7 days, when he complained about his ears hurting we took him in for antibiotics. Mitchel had a fever for just two days and that was it. His immune system is so strong, he looks so good right now and seems to feel great too.

We have a busy week planned with school and getting ready to visit Mike's parents this coming weekend. We will be having Mitchel's celebration party then for completing his last treatment in NY of the 3F8 antibodies. He was dissapointed that we did not do it last week, but he understands he was sick and not feeling good.

Thank you all for your continued prayers, please remember all the families who are fighting this same fight.

Love to all,
Mary

Tuesday, October 16, 2007 12:30 AM CDT

Happy Tuesday,

We have not updated in a while, sorry. We are doing fine, except for the boys are a little under the weather. There seems to be a virus going around the school. Michael came down with it last week and missed school Thursday and Friday, now Mitchel is showing signs of it. There temperature does not go over 99.00 degrees and they seem to feel pretty good, just not 100%. They both have a little cough and their eyes look like they have a cold. Michael tried to go to school yesterday but did not make all day and had the school call to be picked up. Once I got there he said he could stay for the rest of the day, but I took him on home anyway.

I kept them both home today and we will just be taking it easy. Our plans are still to go the Papa's ranch tomorrow, but we will have to wait and see how they both feel.

Mitchel is dissapointed he has not had his celebration party yet, but he know it will be soon. Now it is planned for next weekend in Neodesha.

It seems fall is trying to show itself, the weather is starting to cool down a bit. Yeah! we are ready for some colder weather.

Thanks for checking in on us,

Mary

Tuesday, October 9, 2007 9:11 AM CDT

Thanks for checking in on us, we are doing great. Mitchel expressed to me this morning that he needed to rest today from his treatment last week. What is a mother to do when your child tells you he is tired from his week of treatment. Of course I said okay, I would be tired too. I think of all the drugs that ran through his little veins last week and he has been going non stop ever since we got back.

I know by tomorrow he will be back to normal. Today will be special for us both, he loves his mommy time.

Thank you all for your prayers, we know our journey is not over and we continue to press forward making everyday be the best we can.

Love to all,

Mary

Monday, October 8, 2007 8:39 AM CDT

Happy Monday,

We have so much to be thankful for! Mitchel is doing great, getting back into his routines here at home. Michael and him have been playing non stop together, I know they really missed each other.

I am getting ready to take them to school. Mitchel has not asked to stay home in a long time. I know he is feeling so great and doesn't want to miss out on anything at school.

We are planning a celebration party for this weekend at my parents house. We will be planning another one with Mike's family very soon. We will be celebrating his last treatment of the 3F8 antibodies. He will be honored with an award for the bravest young man. He is planning the party, what we are eating, what kind of cake and I am sure there will be more planning as we get closer to the date. Of course he wants steak and corn and a cake from Maggie Moo's.

Michael will be included in the festivities also, he has been Mitchel's best friend and a great encourager for him through this whole journey.

We will not be returning to NY until November 7, another 5 weeks off, Yeah!

Love to all,

Mary

Thursday, October 4, 2007 3:04 PM CDT

One more day!

Today has been Mitchel's best day so far, he did not sleep long after his treatment and is now playing with his new friend from up state NY. Mitchel calls him dude, but his real name is Howie.

Yesterday we went down to the Nintendo world and Disney store, then we stopped and ate at TGIF. Mitchel played bingo last night and won 3 times earning him $12.00. He was so proud of his money, he spent it already this afternoon.

Tonight is our last night and we head out tomorrow afternoon after 3F8. We are all anxious to get home and back to our own beds.

Thank you all for your continued prayers and encouraging words, we love you all.

Love, Mary

Tuesday, October 2, 2007 9:46 PM CDT

Hello from NY,

Sorry for not updating sooner, I just have not had the energy lately. Things are going good here, Mitchel's treatment is about the same as far as the pain goes. We have been staying at the hospital until he wakes up after his treatment, this seems to be helping him be in a better mood afterwards. On Monday I snuggled next to him in his hospital bed and fell asleep, we were both out for about two hours. I guess I needed to sleep, it felt very refreshed when I woke up. We have met up with some of our old friends and have met a few new ones. It has been a bittersweet trip this time, we are reminded of some of our friends who have earned their angel wings recently, Mitchel has been asking about where some of them are. My answers are short and sweet, he would not understand at this point I don't think.

I spoke with Dr. Kushner today and he is happy Mitchel looks so good and feels so great. He reminded me that our next step will be scans every three months for about a year and then move on to every 6 months. I cannot believe it has been two years since we began this 3F8 antibodies journey, it has been quite a journey.

October 4 is the date Mitchel was diagnosed in 2004, three years ago. Wow! I cannot believe it has been that long, Mitchel has endured so much during those three years, he is so brave.

Tomorrow Daddy arrives around 3:00, Mitchel and I cannot wait to see him. He is our rock and we both feel so much better when he is around us. Michael is at home with my parents, they will be taking care of him until we return on Friday night.

Thanks for checking in on us and for all your continued prayers.

Love to all,

Mary

Sunday, September 30, 2007 7:25 PM CDT

We are here in the big apple once again! Can't say we are excited about it but we will make the best of this situation anyway.

Our flight in went real smooth, we checked into RMHouse and headed out to buy a little something special for Mitchel then off to eat at Outback. Mitchel loves eating there and we are happy to see him eat a good meal before starting his treatment.

The weather here is nice so we walked all the way there and back. He loves to ride in the stroller and just look around. I will have to cut this entry short he is wanting to go to the playroom and find a game for us to play.

Love to all,

Mary

Wednesday, September 26, 2007 9:10 AM CDT

Today is the day Mitchel's starts his GMCSF injections for another round of 3F8. When the lady delivered his medicine yesterday he asked what it was and then he said remember I don't start them until tomorrow night. He knows exactly what is going on, he knows so much he could probably give himself his shots.

We are leaving Sunday for NY, he wanted to know how many days until we leave this morning, so I know it is on his mind.

He will be going for treatment only and we do scans the second week in November.

Mitchel has been feeling great, looks so healthy and has lots of energy.

Thanks for checking in on us and all your continued prayers.

Love to all,

Mary

Friday, September 21, 2007 4:55 PM CDT

Above are the pictures from this morning, Mitchel insisted on wearing his Power Ranger costume to the hospital. Everyone loved it!

Mitchel made it through his dental work just fine. He ended up having 4 cavities filled and 1 pulp cap put on. They were able to get all his x-rays and even cleaned his teeth again.

It is amazing what all can happen when you are asleep, he woke up from anesthesia a little grumpy and just wanted to go home. Of course we had to wait and make sure he was okay before leaving, routine stuff. His IV was put in his foot this time, but so far he has not complained about it hurting. He is playing with Michael and looks a feels just great, a little groggy though. He should be back 100omorrow running around like a typical 6 year old.

Thank you all for your prayers, and a special thank you to our friend Barbara who took Michael to school and picked him up.

Love to all,

Mary

Wednesday, September 19, 2007 9:04 AM CDT

September is Childhood Cancer Awareness month and there are 7 dads doing their best to make this awareness standout to everyone. These dads have started a journey from California to Washington on bicycles and they are stopping along the way to visit children and their families in the hospitals from different cities. They are specifically raising funds for Neuroblastoma research for a study that could possibly be a cure for our precious ones.

These dads have children and wives back at home waiting for them to return, their lives have been touched also by Neuroblastoma, just like Mitchel. Their blog on the www.loneliestroad.org website recounts their daily journey as they reach out to help others. Please visit this website and make a donation to do your part in helping our kids find a way out of this horrible cancer world.

Channel 9 from Denver, Colorado covered the story of their visit to the childrens hospital there, it is very moving, here is the link.

http://www.9news.com/news/article.aspx?storyid=77471

Have a wonderful day!

Love to all,

Mary

Tuesday, September 18, 2007 9:06 AM CDT

I want to dedicate this entry to our friends Jim and Dawn and our hero James Chandler Runde. He earned his precious angel wings last night in the arms of his parents.

On their last entry they shared with us how they told James to run to Jesus when he sees him and James asked if it was okay to walk instead of run. When I read this it reminded me of James so much.

We met the Runde's in NY about two years ago, they have been our inspiration in so many ways and such great friends, Mitchel and James played together alot and always had smiles on their faces. Jim and Dawn have such great faith in God, please join us in praying for their whole family to have peace and comfort during this time.

We love you James, we will see you again in heaven one day.

Sunday, September 16, 2007 8:11 PM CDT

We just returned from another wonderful weekend at the lake. Mitchel wanted to stay so bad, he loves it there.

We have a very busy week coming up. Tomorrow Mitchel has two doctors appointments, both concerning is upcoming outpatient dental surgery on Friday. He has to have a full exam by his pediatrician and we meet with the anesthesiologist, two appointments in two different cities, Mitchel does not want to go to either one, he hates doctor appoinments.

He will begin his injections next Wednesday preparing his body to receive his LAST 3F8 treatment, yeah! He made it through the entire protocol and he holds the record of how many treatments a patient can receive, a total of 17. He continues to have alot of pain with treatment, I wonder if he would ever reach HAMA if we just continued on. I guess we will never know. The 3F8 has given him the best two years, even though the week of treatment is pretty bad, we would do it all over again to see him thrive and be so full of life. After his last treatment he will receive scans every 3 months and then go onto a 6 month schedule.

We pray everyday that the cancer stays away and never comes back. We are reaching the 3 year mark of when he was diagnosed, October 4 2004. Three years ago we were taking him to the doctor every week trying to figure out why his stomach hurt so bad and he just did not seem right. I never want to relive those days ever again.

Please pray that this week goes by smoothly, Mitchel does not want to have his dental surgery and we don't blame him. He has been through enough, but we have to make sure his teeth are taken care. I will post the time on Friday as soon we we know what time.

Love to all,

Mary

Friday, September 7, 2007 10:33 AM CDT

Happy Friday,

I just wanted to wish everyone a happy weekend. Come rain or shine we are headed to the lake for a wonderful weekend.

I printed off Mitchel's journals entrys from the caringbride site and his guestbook entries this morning and I could not believe it had not been done since April. The time is flying by too quickly, I am so thankful we are enjoying every minute of each day and that Mitchel is feeling so good. The boys were playing hopscotch on the driveway the other day and I could not stop smiling watching them be so full of energy and life.

Looking back on the past 3 years I am amazed at everything we have been through. I thank God every day for his amazing grace in our lives.

Love to all,

Mary

Wednesday, September 5, 2007 4:05 PM CDT

Happy Wednesday,

We had a wonderful weekend with our friends and family at the lake. The lake was very busy for Labor Day weekend, the RV park was full. The weather was perfect, it is starting to cool off a bit around here.

We are headed back to the lake this weekend, we only have a few weekends left until next summer. It has been so nice spending time with the boys and watching them have fun, they love camping.

Mitchel is doing great going to school, every once in a while he is reluctant to go but he ends up going anyway. He has been feeling so good these days, all summer long really it is just amazing how well he is doing. Praise God!

Thanks for checking in on us, we love you all

Mary

Monday, August 27, 2007 9:09 AM CDT

Happy Monday,

We had a wonderful weekend just relaxing at home. The boys were in and out of the trailer parked out front all weekend. They are ready to go camping again real soon. We had plans of sleeping in the trailer Friday night until the thunder rolled in and they both jump up and wanted no part of sleeping out there,Daddy had to rescue us with the umbrella. It was fun!

Mitchel is coming down with a cold hopefully it will be like the last one he had and go away in just a few short days. His nose is stopped up, I know how miserable that can be. He crawled in bed with us in the middle of the night and went right to sleep holding my hand, he is such a little snuggler.

We are going camping for Labor Day weekend at the lake, the boys can't wait. Their cousins and friends will be joining us throughout the weekend.

Thank you all for your continued prayers, we continue to praise God everyday for his many blessings.

Love to all,

Mary

Thursday, August 23, 2007 9:57 PM CDT

Mitchel had a great day today, from the time he got up until he went to bed. He was in a very good mood this morning, all smiles and ready to go to school.

I took him for his HAMA blood draw and he was so calm about the whole thing. He was talking to the nurse about the stick and was letting her know he needed to be notified before the actual stick occurs. She smiled and he just kept on licking his lollipop like nothing was happening. She found the perfect vein and said here we go, he sat up and before he could say much the needle was already in. He was surprised that it was going so smoothly, he talked through the whole thing. Thank you Jesus! I need moments like these.

Mitchel has discovered one of his friends from school lives down the street and has visited his house for the past two days. They are so fun to watch.

Hope everyone has a wonderful weekend, we are staying home and relaxing all weekend.

Love to all,

Mary

Wednesday, August 22, 2007 12:48 AM CDT

Thanks for checking in on us, and we are so encouraged by the messages left on here.

Yesterday we took Mitchel for his dental appointment at the pediatric dentist. Mitchel loved it there and said he can't wait to go back. The experience was so much more pleasant for us all. They were able to clean his teeth and most importantly get x-rays of his teeth.

Mike and I had a knot in our stomachs about the results because he has had radiation to both jaws and we were told before that his adult teeth may not develop in those places. I could tell that the doctor was looking and telling his assistant alot about the bottom teeth. The results show that his lower molars are not developing properly or not developing at all so we need to keep his baby teeth as long as possible. He has a pretty good size cavity in one and a few small ones that need to be dealt with now. We choose to have Mitchel admitted to the hospital as an outpatient and let the dentist get all the work done that needs to be done, we know Mitchel would not stay still and kick and scream so this is best for everyone. The last thing we want to do is tramatize him, he has been through enough. He goes in on Friday, September 21 and I am not sure how long the procedure will take, a few hours.

I know this is the least of our worries compared to the cancer part but still as a mother I worry about it all. I was so depressed last night thinking about that and what the other families are going through right now, it is just so unfair that these kids have to suffer so much.

I was suppose to take him for HAMA blood draw today, but I got a call from the school and had to run and pick up Mitchel he had a fall from the monkey bars and scraped his head right on his left eyebrow. Right when I walked into the office he started to cry and we just hugged for a few minutes. He is feeing much better now that he is home. Luckily today was his day to bring the classroom stuff animal home, it is a dog they each take a turn taking home named Hugs then they write in Hug's diary about their time with him. Anyway, Mitchel said I am so glad I have Hugs to make me feel better.

I will have to take him tomorrow for his blood draw I know he will not be happy about that at all, but is has to be done.

Thank you all for your prayers, we are encouraged everyday by all your love and support.

Love to all,

Mary

Monday, August 20, 2007 10:29 PM CDT

We enjoyed another great weekend at the lake, camping right by the water. The boys played with their friends all weekend long, we went boating, fishing and ate lots of good food. We were having so much fun I forgot to take pictures.

Mitchel was very reluctant to go to school today, I had to really talk him into it. Once he got there he was glad he went. Tomorrow he has a dental appointment to see about fixing his cavity, this will be a challenge for the dentist. We made an appointment with a pediatric dentist so hopefully this will help, Mitchel does not like anyone messing around with his teeth.

We got our tickets today for our next trip to NY for treatment, October 1-5. I feel a little nervous not getting scans until November, but that is what the doctors want this time, Dr. Modak feels Mitchel has been getting too many scans. I keep thinking about the spot that showed up on the MIBG on Mitchel's forehead area, Dr. Modak confirmed with the radiologist that it was nothing significant, but still it was there. Sunday night Mitchel said his head hurt and when we asked him where he pointed right to that spot, just above his right eye. Mike and I just looked at each other, Mitchel has not said anything else since then about it. There are spots on the MIBG that have showed up since March in the pelvis, femur area but they are not saying it is relapse, just that they are watching it closely. The MRI and CAT SCans come back completely clear, but it is so hard not to sit and worry about everything. I keep thinking if Mitchel complains about his head hurting one more time I am calling Dr. Kushner for another scan to be done.

There has been several of our NY friends receiving bad news lately, our hearts are breaking for them. It is so unfair for our children to have to suffer so much. Why can't they find a cure for this terrible disease????

Please pray for the Guerra family, Runde family, Franca family and so many more. Please pray that Mitchel will stay cancer free forever!

Love to all,

Mary

Wednesday, August 15, 2007 4:41 PM CDT

What a great day this has been. The boys started school and are happy with their classes and teachers. Mitchel said he got tired but was happy he made it through the whole day.

Mitchel's best friend from last year is in his class and that makes him really happy. Michael has a few old classmates too.

Thank you all for checking in on us, we appreciate your love and prayers.

Love to all,

Mary

Monday, August 13, 2007 11:42 AM CDT

Happy Monday,

We are all slowly but surely getting back to our normal routines here at home. It is so good to see Mitchel running around again and be smiling all the time. They are both excited about their school starting on Wednesday. We will go tomorrow night to meet their teachers and visit their classrooms. Mitchel has Mrs. Turcott this year, which is a blessing, Michael had her last year and she got to know Mitchel a little bit at different school activities. Michael has Mrs. Goodwin, he has never met her but is excited about having her as his teacher.

We are going camping at the lake this weekend with some friends, the boys are very excited. We will again have another 7 weeks off before heading back to NY, Yeah! It is already a distant memory and we are enjoying every minute of each day.

Please pray for our friends the Runde's, their son James and Mitchel enjoyed playing together in NY in the past, James's cancer is progressing and needs alot of prayers. You can visit them at www.jamesrunde.com.

Love to all,

Mary

Saturday, August 11, 2007 4:34 PM CDT

We made it home after getting stuck in Chicago last night. But all is well, we had a nice hotel and ordered some great food to our room.

We arrived home this morning about 11:30, it was so good to see Mike. We missed him alot.

As I walked into the kitchen I noticed the light blinking on the phone for messages and there was one from Dr. Kushner. He said all SCANS CAME BACK CLEAR, URINE MARKERS ARE WITHIN NORMAL RANGE, BIOPSY LOOKS CLEAR.

Yesterday the MIBG scan showed a small spot on his forehead, Dr. Modak came and told me he was going down to the radiologist to find out exactly what they thought it was. The 3F8 was put on hold until he returned, it was so hard to wait, I was on pins and needles. Finally he came in the playroom and told me the spot was nothing significant at all, it was nothing. The MRI came back clear and it was of the head and orbitz, the CAT scan came back clear of the chest and pelvis area. So it was back to the 3F8 and Mitchel was not happy at all.

I felt sorry for the people next door to us, Mitchel was kicking and screaming, telling me to not let his nurse hook him up. It was so hard not to just break down right there and leave. His nurse was really good, Julie. She got him hooked up but then could not find the biloxi medicine for his stomach. After looking all over for it she discovered Mitchel had taken it and hid it under his shirt, then he put it under his pillow. That little stinker, he was determined to not get his treatment. But after a little convincing he turned it over and we got on with his treatment. It was horrible all week, pain wise.

We are due back for his last and final round of 3F8, #17, the first week of October. We will return for scans the first week of November.

Thank you all for all your kind words and prayers, we love you all,

Mary

Thursday, August 9, 2007 3:04 PM CDT

Finally we are back in our room and all is quiet. His day started out in the CAT scan dept., he just fell apart as we went in for his appt., he started kicking and screaming on the table and the nurse I know was thinking he is here without anesthesia. He would not calm down, for some reason he just hates that scan. It is the shortest one, but they make him put his hands up and they fool around with his IV for the contrast. As the nurse was injecting the flush it would not go in so she took off the bandage for a peak at what might be the problem and out came the IV, she tried to put it back into the hole in his little arm and I said that's enough, you need to stop,we will go upstairs and get another one put it. What a way to start your morning. Anyway we got another one put in and made it back down for another go at the scan. This time he was calm and was even smiling, what a difference 30 minutes makes. As far as his treatment goes he had a hard day again, the pain was so intense, he just screams so much. His blood pressure was a little high so his nurse suggested he use the bathroom and we run it again. On our way back from the bathroom he lost his cookies all over the floor, ugh! It was a mess and he was so upset about his favorite shirt. Ursala picked him out a really cool one from the playroom and I washed out his other one in the bathroom. He fell asleep in the stroller and we went to his next appointment at 1:45 for his MIBG injection. That took an hour to get in, as soon as the injection started he screamed, LEAVE ME ALONE! The nurse said boy he is strong. As much as he has been through I am surprised he doesn't give them all a punch in the ole kisser.

We are all glad that we are leaving tomorrow. We are praying for clear weather and that we don't get stuck somewhere, like Chicago.

Tomorrow is his MIBG scan, the most important scan for me. It is at 8:00 am before his treatment tomorrow. We will be rushing around because our plane leaves tomorrow evening. I think we will be fine on our time, I hope anyway.

Thanks for checking in on us,

Love to all,

Mary

Wednesday, August 8, 2007 12:42 AM CDT

We are almost finished, just two more days. After todays treatment I don't think he will ever HAMA, the pain was so intense and he screamed at the top of his lungs for what seemed like forever. I know he is so frustrated at this point after so many treatment, 14 to be exact, not counting the first two on a different protocol. His last treatment will be October 1, yeah! We told him he only has one more but that doesn't seem to help him now.

Anyway, we made it down to nintendo world last night and grandma treated the boys to some really cool things, then we went to the disney store and they again got something, they were all smiles on the way back to RMH.

Mitchel is now sleeping, he just vomitted and I think that helped him feel better. He usually does not feel better until around 7:00 or 8:00 pm. After he eats is when I start to see his old self come out.

This morning was his MRI and he did wonderful. The technicians are so amazed at how still he is. They made sure he got a special present afterwards, a new mickey mouse doll. He smiled really big when they gave it to him.

Tomorrow is his CAT scan, he will need to drink his contrast by 7:00 am, yuck, and so I will have him up by 6:30 for that. It just amazes me how these kids just go through whatever and hardly complain.

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

Mary

Tuesday, August 7, 2007 1:17 PM CDT

Mitchel is now sleeping in the room here at the RMH. Today was pretty intense pain wise, he seemed to scream more about being in pain. We were glad when he went to sleep and finally settled down.

After he wakes up from his nap we are headed down to Nintendo World and probably walk down to the Disney Store before going to eat at TGIF.

I spoke with Dr. Kushner today and he ordered a urine test, we will turn it in tomorrow. The results from the last one in June were the best yet. Well within the normal range for no cancer. He will have his MRI of the brain tomorrow and his CAT Scan on Thursday followed by his MIBG on Friday. Dr. Kushner said we would schedule his next scans after the results of these, the question is whether we scan again in 7 weeks along with the 3F8 or wait the normal 3 month period, which is the usual schedule for most patients. Mitchel has never been on the regular schedule they have been watching really close, which if fine with me, if something does come up I want to catch it right away.

So far this week is moving by pretty fast and we will be coming home before we know it.

Thank you all for your prayers and love,

Mary

Monday, August 6, 2007 7:42 AM CDT

UPDATE: 5:30 pm

Today was a long day but treatment and bone marrows are done. Mitchel had pain but it was not extreme, he needed his usual 3 rescues and I rubbed his feet while grandma rubbed his feet. Tomorrow he only has treatment and no scans.

We made it here in NY safe and sound. Our flights were right on time and seemed to go by really fast this time.

We checked into RMH and headed straight for the Outback Steakhouse. The boys ate so much steak we were all stuffed. Then we returned to RMH and the boys made some arts and crafts before showing Grandma the playroom. We finally got settled in our room and asleep by 10:00.

This morning he has had his finger stick and we are now just waiting for the IV to be put in and his bone marrow biopsies which are scheduled for 10:00 this morning. Mitchel's mood has already changed this morning, he was very quiet during his finger stick, not waying a word to the nurse, I can only imagine what is going through his mind.

Please pray that we have a good day and his 3F8 treatment pain is not bad.

Love to all,

Mary

Saturday, August 4, 2007 1:55 PM CDT

We are heading out tomorrow, I can't say any of us are excited about this trip. But we got to do it.

Mitchel will be having all his scans next week along with treatment. This is always a nail biting time for us, ugh! In the cancer world you never know when your lives will be turned upside down. We keep praying for clear scans and trusting God will be with us each and every step of the way.

Also, there are five Dads of neuroblastoma children that are bike riding from California to Washington D.C. to raise money for our cause, please check their site
www.loneliestroad.org.

Unfortunately, neuroblastoma only receives a very small percentage of federal funding and this is a great way to make sure the funds raised will go directly for neuroblastoma research. The website also offers some great information about what NB is.

Thanks for checking in on us, we will update again from NY.

Love to all,

Mary

Thursday, August 2, 2007 4:07 PM CDT

I cannot believe it is already Thursday, this week is just flying by.

Mitchel started his GCSF injections yesterday and did pretty good. He cried a little afterwards but when I asked him if he was okay he told us he was crying about having to go to the dentist today. He had an appointment to get his teeth cleaned and for x-rays.

The dental assistant took him back while I was in the bathroom and by the time I got to him tears were rolling down his cheeks. He said he was scared and we had to talk him through it. He ended up not having his x-ray and she was only able to clean a few teeth. The dentist came in and looked at his teeth, he has a cavity on one that needs to be fixed pretty soon. Since Mitchel was so upset and it was looking pretty clear he was not going to cooperate that the dentist recommended a pediatric dentist, I agreed and we made an appointment for Aug. 21. Dr. Stephens did not want to upset Mitchel and make him afraid for any future appointments.

Of course when we left Mitchel perked right up and was ready to claim his prize promised to him from ToysrUs.

We are headed to the lake tomorrow for the afternoon. The boys are excited about tubing. Then Sunday we will be leaving for New York, I hope the time goes by really slow until then, I am not quite ready to return.

Thanks for checking in on us,

Love to all,

Mary

Sunday, July 29, 2007 7:50 PM CDT

We had a wonderful time in Branson. We played miniature golf at the boys favorite spots and went to Whitewater Water park, and it was crowded, but we still enjoyed riding down the slides with the kids.

They loved camping, the RV park had a great pool and lots of rocks and sticks for them to play with. Friday night the boys and I took a long flash light walk and found lots of critters hiding away in the dark. The are definately all boy.

One more week before we return to NY for Mitchel's week of treatment. He will start his injections on Wednesday, I am dreading that, I can't imagine what he is feeling. It is something we don't talk about until the day of injection. Mitchel just seems so healthy it is so hard to get back into that life again, but I must face reality again.

Thanks for checking in on us,

Love to all,

Mary

Tuesday, July 24, 2007 10:42 AM CDT

Happy Tuesday,

We are all doing great! Mitchel continues to feel energetic and very healthy. Thank you Jesus!

Yesterday I took the boys to a slip and slide party at our church and they both had a really fun time. We then drove to Tulsa to meet up with Gigi, Papa and their cousins to see Ratatouiee. It was a really good movie, Michael told me this morning he was going to be a chef. Cute!

They were both so tired on the drive home last night, it did not take them long to eat snack and go to bed. Already this morning they are playing non stop, asking if they can go swimming yet. Mom is not quite ready this morning, we have been so busy I have neglected the house cleaning, oh well I guess it will still be there when I get around to it.

We are leaving Thursday and heading to Branson, Mo. We will be camping in our trailer through the weekend. There is a Whitewater water park there and I know the boys want to go there, Mitchel still talks about all the miniature golf places he played on before in Branson. It will be fun to camp out and explore the ourdoors.

After we return home from camping we will have one week left before returning back to NY. Then they start school, that doesn't seem right, this summer has gone by so fast. I will have to say we have made the best out of every minute of each day and we will continue to do so.

We thank God everyday for Mitchel's health and his strength.

Love to all,

Mary

Friday, July 20, 2007 8:19 PM CDT

Today was a wonderful day, we headed for the lake this morning and spent all day there. The weather was incredible, not too hot. I will probably be soar tomorrow it has been so long since I got up on skiis. I had to ride on the back of the tube with Mitchel, he did not weigh enough to keep the front end from going under with him on it, he was a little disapointed because mom did not want to jump any waves. Sorry baby! The boys also enjoyed jumping off the back of the boat, they are both learning how to swim so well.

We don't have much planned for the rest of the weekend, just relaxing.

Thanks for checking in on us,

Love to all,

Mary

Tuesday, July 17, 2007 9:06 PM CDT

Happy Tuesday,

Our summer continues to move along with lots of activities. The boys were very excited this afternoon when daddy pulled up with two new bikes in the back of his truck. Michael was a little disapointed that his bike did not have training wheels but is anxious to learn how to ride. Daddy is working up a sweat running along beside him. Mitchel loves his bike and is already going full speed.

Thanks for checking in on us,

Love to all,

Mary

Friday, July 13, 2007 9:48 AM CDT

Happy Friday,

We made it home from San Diego Wednesday night. The boys are still adjusting to the time change, they are still on San Diego time sleeping in till 11:00.

Mitchel is doing great, he is feeling wonderful and just looks so healthy. During our trip he had so much energy, never complained about anything hurting or not feeling good.

I thank God everyday for Mitchel's health and for him to stay cancer free forever. Scans are still several weeks away, we will enjoy every minute of everyday during our break.

Thanks for checking in on us,

Love to all,

Mary

Wednesday, July 11, 2007 11:40 AM CDT

Happy Wednesday,

We are coming home today from our vacation. It has been the most wonderful, relaxing vacations ever. The boys are not quite ready to go home but I know once they see their daddy they will both be glad they are home.

We have been to Seaport Village by the Ocean, the beach, Disneyland, Sea World and camping at a beautiful area in Santee CA. They also enjoyed swimming almost everyday. Everywhere we went we had 6 kids and it was so much fun watching them all interact and enjoy themselves.

Last night we went to Sea World, they now have a night show for Shamu and it was really cool. They have also added a few rides, we all went on the roller coaster two times right when we got their because we knew we would all get wet. The kids all got to make a build an animal at the park, it was so much fun just watching them all pick out their favorite animal and outfits. We just stood back and let them shop, we were all anxious as each one brought their new friends to us and showed us their adoption papers with the names they picked out all on their own. Michael picked out a dalmation dog and he was dressed in a police outfit, he named her Polly, Mitchel picked out a Zebra and he dressed his in a fireman outfit named stripes.

We got home around 11:00, we were all tired but it was worth it.

Please remember our good friends Jim and Dawn Runde, their son James is facing new challenges in his fight against neuroblastoma. Thank you all for checking in on us,

Love to all,

Mary

Wednesday, July 4, 2007 12:03 AM CDT

Happy Wednesday,

We made it to San Diego safe and sound. We had one of the smoothest flights getting here right on time.

The boys had a wonderful welcome at the airport from Grandma Elizabeth and one of their cousins Dillon. They were so excited to see everyone. It is hot here so we all hit the pool pretty quick after getting here.

Today we are going to a barbeque at my brother's friends house, they have a pool so the kids will be swimming all afternoon. Hopefully we will be getting to bed at a decent hour because tomorrow we are going to Disneyland. The boys have 4 cousins here, three boys and one girl. Poor Kaitlyn she is totally outnumbered.

Mitchel is feeling great, it is so awesome to see him and Michael enjoy their summer so much. They both deserve it.

Thank you for checking in on us, we will be home on July 11.

Love to all,

Mary

Wednesday, June 27, 2007 9:17 AM CDT

Good morning,

Everything is going great here, we are truly having a wonderful summer. This will be our first uninterrupted summer since 2004 with our family and friends. Last summer about this time we were thinking about returning back to NY for Mitchel's surgery, they told us he had relapsed and surgery was just a week away, we arrived on July 5 and stayed until the middle of August. Turned out to not be relapse at all and he has been living life to the fullest ever since.

We are getting ready to head north to Kansas for the 4th celebration this weekend, we will get to see all of Mike's family. The boys love seeing all their cousins and shooting off fireworks, it is one of their favorite holidays.

We will return on Sunday and start packing Monday for our trip to San Diego on Tuesday. It will be great to see my mom, brother and his family.

I received Mitchel's schedule for our return trip to NY for scans and 3F8. It will be a busy week trying to get everything done, I am so thankful that my mother in law is coming with us, she is such a blessing to us everyday. We will be leaving Sunday, August 5.

I have to take Mitchel in for his HAMA blood draw, I haven't told him yet. I am praying they can get it done with only one stick this time.

Thanks for checking in on us, have a great 4th!

Love to all,

Mary

Wednesday, June 20, 2007 9:35 AM CDT

Happy Wednesday,

We got an e-mail from Dr. Kushner yesterday and this is what it said:

BM and urine show no neuroblastoma, MIBG scan shows nothing definite, very faint, of questionable significance, similar to the past.

We will see you again August, in 7 weeks, repeating scans and BM's that week.

In the past there has been something show up on the MIBG in the pelvis and leg area, but it has become very faint and I honestly could not see a thing this last scan in those areas like I did on the last two scans.

Yesterday day I received two calls from Sloan, one from Maria and one from Ichi. Maria told me Mitchel did test positive for the fifth disease also known as parvo virus. This is nothing serious, if he would not have broke out into a rash we would not have known anything was going on. He has not ran a fever or acted tired at all. Ichi called a few hours later to inform us Mitchel had been exposed to the chicken pox probably on Thursday at the clinic. The time period he could break out is June 24 - July 5. We will be keeping a close eye on that, but there is nothing we can do at this point. Too late for the IV/IG medication to prevent a break out, it has to be given within 24 hours of the exposure. The exposure came from a boy who was there with his brother, he was not a patient of the NB team.

We are enjoying our summer break, the boys are so happy to be home and have so much free time. We will be traveling soon to San Diego to visit my mother and brother. We have all accumulated enough miles through American Airlines to get free tickets for our trip. The boys are excited because we will be visiting Disneyland and Sea World while we are there. We are also planning on going camping in the mountains and going to the beach. Mike will not be going just the boys and I.

Thank you all for your prayers, God has been so good to us he continues to encourage us and give us hope everyday.

Love to all,

Mary

Saturday, June 16, 2007 6:43 PM CDT

Home at last....

Everyone is slowly but surely getting back into their routines, Mitchel woke up this morning at 6:00 and wanted to know if it was time to get up and play. It was so sweet to hear his little voice in my ear this morning. I said sure why not and it was not long before Michael was up too.

The boys spent the day with daddy, they went to Incredible Pizza and Giligans Island putt putt. I had the day to myself to enjoy shopping with my daughter. She is getting married in November so we started the process of shopping for her wedding dress. It was really nice spending the day together.

When I got home Mike grilled out while the boys jumped in the pool for a quick swim before the storm came in. Tomorrow will be so nice to be at home to celebrate Mike's fathers day, the boys have some things planned for him.

The stress from being in NY and going through treatment is starting to fade away, getting back home makes it all better. Mitchel looks so good and feels incredibly well, it is such a blessing to see him in such good spirits. I look at him and realize that I must enjoy life just as he does, every second of the day is filled with laughter and being happy.

All next week we will be staying at home, swimming and enjoying every minute of each day.

Love to all,

Mary

Thursday, June 14, 2007 3:20 PM CDT

One more day....

We are almost there and cannot wait to be on that plane tomorrow.

Mitchel's treatment went okay, he did not have pain until the flush. It was not that bad but seemed to linger on and he could not get comfortable so again he needed 3 rescues.

I just woke him up because they want to go the Nintendo World and the Rainbow store. I knew he would be upset if I let him sleep through that. I am hoping he will feel good enough for us to stop and eat somewhere.

I did find out his school will start on Aug 15 so we will be returning Aug 6 for another round of 3F8, unless he shows HAMA positive. The scans will probably be scheduled for the first week in September that would be 3 months from now and he is on that schedule for scans.

Please pray that we have a smooth trip home and Mitchel's treatment not be so painful tomorrow.

Love to all,

Mary

Wednesday, June 13, 2007 3:43 PM CDT

Happy Wednesday,

Today's treatment was okay, the pain just keeps lingering on, especially in his feet this time. We went through so many hot packs, I finally taped them to his feet so they would be nice and tight that seemed to help.

They noticed he had some hives just before unhooking him so he got an extra dose of vistril and that helped. I saw Dr. Kramer in the hallway as we were leaving and I told her about the pain the his feet. She said with the older kids they do see more of them having pain the feet for some reason. She said Mitchel is getting older and growing that he could fall into that category more and more as he gets older. She said there is a drug they are using on the older kids that you begin to take a few weeks before treatment that can help keep the nerves in their feet from being so sensitive. I forgot the name of it but she said we could discuss it later if were interested in giving it to Mitchel for his next round of 3F8, which is scheduled for August 13. I am hoping that is not the week his school starts, I want him to be there the first day of school to get in with everyone at the beginning.

We may have to come back a week early, we will see.

The boys are now down in the playroom and Mitchel does seem to feel better, hopefully he will not have anymore pain in his feet. Tonight is Bingo night and he loves to help call out the numbers, last night they had a party and he slept through the whole thing. Michael had a ball, they had alot of activities for the kids.

Tomorrow we are packing to come home, can't wait. It won't be long and we will be in our own beds.

Thank you all so much for your messages they are so encouraging and especially all your prayers.

Love to all,

Mary

Tuesday, June 12, 2007 3:37 PM CDT

Happy Tuesday,

Mitchel did great today considering he had bone marrows before his treatment. He was coming off his anesthesia when they were trying to hook him up and his was a bear, kicking and screaming. Eventually he calmed down and we were able to get him hooked up, I felt really bad that he had to endure so much today. But the bone marrows are done and he will just have his treatment for the rest of the week. The pain today was not too bad at all, he was very grumpy though and could not get settled.

We returned back to the RMH for a short nap and now we are down in the playroom.

Thank you all for checking in on us,

Love to all,

Mary

Monday, June 11, 2007 9:38 AM CDT

UPDATE 8:20 pm

Mitchel is now playing in the playroom and feeling much better. He had his moment after his treatment where he threw up. His ankles were hurting earlier but now everything seems to be fine. I forgot to mention his counts for today:

Platelets - 240
Hemoglobin - 12.6

UPDATE 3:15

Mitchel is done with his treatment for today. Mike got to stay for the painful part, thank goodness. Mitchel asked him to tell him the minute he was leaving so they could hug goodbye. After he left, Mitchel slept for a good hour and now he is playing in the playroom with Michael. He did have pain but was not too bad just lingered on for a while requiring 4 rescues for today. Thanks for checking in on us, his bone marrows are scheduled for 10:00 am tomorrow.

Happy Monday,

CAT Scan clear!
MIBG per Dr. Kushner looks great!

We are starting the 3F8. The official report is not out yet on the MIBG, but we believe the report will come back all clear. We were concerned about the spot in the pelvis, but we now feel confident that Mitchel is still NED. Bone marrows are in the morning.

I hate that he has to go through another week of 3F8 but it seems to be working in training his system to fight off the cancer. Honestly, Mitchel has been looking so great and feeling wonderful for quite some time. It is such good news that we will have a summer full of fun and away from treatment for another 8 weeks, I remember last summer we were here from July 5 - August 20, that is when they thought Mitchel had relapsed. Thank God he did not relapse.

We will not return until August for another round of 3F8, after that he will only have one more to go. Yeah!

Thank you all for your continued prayers and love, we appreciate it so much.

Love to all,

Mary

Friday, June 8, 2007 7:24 PM CDT

We made it here safe and sound last night. We were all tired after a long day of traveling. Things were delayed a bit in Chicago because of the winds but overall it went by pretty smooth.

Mitchel had to drink his 8 ounces of contrast first thing this morning by 7:20, then got his IV put in (only two sticks, arm and hand) and at 9:20 he went for his CAT Scan. So far no calls from the doctors which is always good news.

He had his MIBG injections at 1:45, he pretty much screamed through that, he said the medicine going in burned. We have had the rest of the day off and enjoyed some much needed rest.

We are down in the playroom letting the boys have some fun before we go to bed. It seems like everytime we come hear Mike and I are so tired, like we don't have any energy. It is hard not to get depressed being here. Tonight Mitchel said goodbye he was going home, I know for sure if there was a button he could push to be back home he would not hesitate in pushing it.

His MIBG is tomorrow morning at 9:00, that is it for the day, his bone marrows have been rescheduled for Tuesday morning instead of Monday. Because of the rescheduling I think Mike will return on Monday afternoon instead of Tuesday morning, he was going to stay until then because of the bone marrow in Monday morning.

We will keep you all updated as we know things, thanks for checking in on us.

Love to all,

Mary

Thursday, June 7, 2007 9:43 AM CDT

On the road again...

We are headed for NY in about two hours. Hopefully the weather in Chicago will not be too bad, we want a smooth trip all the way.

Mitchel started his GM injections yesterday and did just great. He will have one for the next 8 days. Tomorrow is his CAT scan and Saturday is his MIBG scan.

We will have alot of down time this weekend so I know the boys will want to hit all of our favorite spots in NY.

Thanks for checking in on us, we will keep everyone updated as we find out the results of his tests.

Love to all,

Mary

Tuesday, June 5, 2007 8:57 AM CDT

Good Morning!

As you can see from our new pic's we had a wonderful vacation. We made it home last night, there's no place like home!

The boys did not want to leave, but now I think they are glad to be home again. We had a pretty hard time getting home and even had to stay an extra night in Miami because two flights were cancelled, one right after the other. But, now that we are home that is all fading away now.

It was one of our best vacations, Mike and I enjoyed so much watching the kids have so much fun. Everyday Mitchel would tell us how much fun and how awesome this vacation was. He even learned how to swim on the trip without his floaties, he is so proud of himself. They enjoyed seeing all the Sesame Street characters, they had so many activies and fun things for them to do everyday. The swim up bar for them was very cool, ordering their lemonades from the pool. There was an endless supply of snacks all around them everyday. Their favorite was the self serve ice cream machine and Mitchel was able to get his steak every night. He had a favorite desert cafe that we would walk to at night so he could get his sugar cookie. Michael could not get over how everything was free, he is still learning what all inclusive means, cute!

Well I am washing laundry and getting ready to repack our suitcases to head to NY for Mitchel's scans and treatment. We are leaving on Thursday and the boys and I will return on Friday the 15th. Mike will be returning on Tuesday to get back to work. I hope I can handle having them both their, I have done it before and it has always gone really smooth. It is all worth it just so Mitchel can feel more relaxed, having Michael there for him seems to give him alot more energy and a much brighter outlook on things.

His CAT scan is scheduled for Friday and MIBG scan on Saturday. Bone marrows on Monday and he will start his 3F8 treatment then too. Monday will be a rough day and I am so glad Mike will be there to get us through the day.

I know there are alot of people still praying for Mitchel and us, we truly appreciate your continued support and love. Please pray and believe with us that his scans will be all clear and he will stay cancer free forever.

Love to all,

Mary

Wednesday, May 23, 2007 3:22 PM CDT

Happy Wednesday,

Mitchel did awesome last night at his graduation, I will be posting pictures soon. He sang along with his class and walked across a big stage to receive his diploma. Mike and I sat in awe as we watched our baby be so grown up and be so amazingly confident.

Both the boys are enjoying their grandma Elizabeth, she is so great with them.

We ask that you continue to pray for Mitchel that he will stay clear of cancer forever!

Love to all,

Mary

Monday, May 21, 2007 7:48 PM CDT

Happy Monday,

Thanks for checking in on us, we are just keeping busy. The boys are almost finished with school, they get out this Friday and they are very excited.

Tomorrow morning we are attending an author's party for Michael, he will be reading us his story he wrote all by himself. Then tomorrow night is Mitchel's graduation, we are all so excited about it. It is at the high school and they all will be wearing a cap, how cute!

This is a true miracle that he will be graduating from kindergarden and moving on to 1st grade. He has been through so much over the last two years. We are all so proud of him.

Grandma Elizabeth is here visiting us from California, the boys have her busy playing games and watching them ride their scooters.

We are leaving on our trip this Sunday, it will be so nice to be on the beach building sand castles and swimming in the ocean with the kids. The resort has a area just for kids called Pirate's Island with water slides and they will even have their own swim up bar to order whatever they want. We will be flying to Miami then on to the islands of Turks and Caicos in the carribean, we are all looking forward to some serious R&R.

Thank you all for your prayers, please continue to keep all the brave warriors and their families, especially the Nish family and their daughter Marielle.

Love to all,

Mary

Sunday, May 13, 2007 10:54 AM CDT

HAPPY MOTHER'S DAY

I have added some new pic's from yesterday, we all went to the driving range and the boys hit golf balls with daddy. Today we are headed to Kansas to visit with Mike's family at uncle Chad's house. The boys love visiting with their cousins and are so excited about going.

Mitchel is getting over his cold and seems to be feeling really good. Yesterday he played all day, every once in a while he would cough but no complaints of his throat hurting.

We have alot planned over the next couple of weeks, the boys will be getting out of school in two weeks, my mother is coming to visit for a week and we are leaving for a vacation just a few days after school is out.

When we return from our vacation we will have a few days at home, then repack to head to NY for Mitchel's scans and 3F8 treatment.

There are alot of families we are praying for that are enduring so much right now, please join us as we continue to pray for their encouragement and strength to get thru these difficult times.

Love to all,

Mary

Tuesday, May 8, 2007 12:58 AM CDT

Happy Tuesday,

As you can see from the new pictures the boys had a great time visiting their Papa's ranch over the weekend. Rowdy their cecilian donkey was loved on all weekend. The boys think it is so cool to have the donkey as a pet, Rowdy loves coming up close to the house and seeing everyone.

Mitchel spent hours catching butterflies, he was really good at it. Even without a net he was able to use a paper bowl and time it just right to catch his butterfly. It was very relaxing, just what we needed.

Over the weekend I did e-mail Dr. Kushner about Mitchel sweating at night, I was getting a little concerned. A few nights his pillow and hair were pretty wet too. After talking to my friend, Dawn, and Dr. Kushner I felt a whole lot better. I think the immunizations might have triggered his horners syndrome that he has, which can cause sweating. Whatever it was the sweating has stopped for now. It is so hard not to worry about the least little thing, I try but the worrying just gets the best of me sometimes.

Both boys are doing great, Mitchel is so full of energy. He has been invited to a birthday swimming party and he is so excited about that. This will be his first party to go alone. Of course Michael wants to go but we explained to him that it was an invitation from one of Mitchel's friends and he will get to do something fun with daddy that night. At first Michael was upset but then realized he could have daddy's full attention and get to pick out what they do. We think it will be good for Mitchel to go by himself and socialize on his own without brother this time.

Well that is about it from this end. Please continue to pray for all the NB warriors out there that are having a really rough time right now. There are so many families that need our prayers.

Love to all,

Mary

Tuesday, May 1, 2007 3:12 PM CDT

Happy Tuesday,

We just returned from Mitchel's dr. appointment, Dr. Bumpus agrees that he has a sinus infection and she put him on an antibiotic and eye drops.

While I was there I mentioned his immunizations that he has never finished taking, he has had the first two rounds, so it was time for the 3rd round. He got 4 shots two in each leg, he was so mad about getting them he did alot of kicking and screaming. But he seems to be fine now. I know the immunizations are important but it was so hard to listen to him cry, I felt terrible about not being able to give him a heads up about the shots.

Have a great day!

Love to all,

Mary

Monday, April 30, 2007 5:12 PM CDT

Happy Monday,

We had a great weekend, the weather has been so beautiful. Mike and I managed to sneek out for dinner Saturday night for our anniversary dinner, the boys stayed with Grandma and played at the park. I can't believe it has been 15 years since we were married, time just flies by.

Mitchel has been having some discharge in his eyes and alot of drainage for the past few days so I am taking him in to the doctor tomorrow. He probably has an sinus infection, but we will see.

This weekend we are going to Papa's ranch, the boys are very excited about going. It will be nice to get away to the country and play with the animals. They have a new colt and baby calves and the boys will be exited to see the little donkey Roudy again.

We should be hearing something about Mitchel's HAMA test this week. I know he would love to be HAMA positive and not have anymore treatment, we will see what they say.

Thanks for checking in on us,

Mary

Thursday, April 26, 2007 10:41 AM CDT

Happy Thursday,

This week is just flying by, I wished the 3F8 weeks would go by this fast.

Mitchel is doing okay this week, he does seem to be more tired and has stayed home a few days more days than last week. Mike and I think he is trying to recover from the 3F8 treatment this week instead of last week. He has started coughing a little bit, but it is probably this crazy weather we have been having. One day it is warm and beautiful and then the next it is cold. We have had some really stormy weather all week so I am sure it is effecting his sinuses.

I decided to have his HAMA blood draw done yesterday, he called me to pick him up early from school so I just took him after I picked him up. He did not know about it so I worked my way up to it, we first went to the pet store and he loved seeing all the animals then I starting hinting around that he was going to have a test done. I should have realized that he knows what is going on, he said no not again. Why am I the only one who has to have these painful tests. Why am I sick? I immediately got a lump in my throat and just prayed for God to give me words that a six year old would be comforted with. It would not be so bad if they would not have to always stick him twice, but once again they stuck him twice, once in the arm and then the hand. It always seems to be somebody new when we go in there and they just don't know his history about his veins. The nurses were very nice and they did do a good job encouraging him through it.

He is home today and we are planning a great day together. He loves being home with mom, I am sure he get's a little spoiled.

Thanks for checking in on us and for all your continued prayers.

Love to all,

Mary

Sunday, April 22, 2007 4:57 PM CDT

Hello everyone,

As you can see from the new pictures Mitchel has celebrated his birthday, alot! He celebrated in NY, Kansas and Oklahoma.

Things are going great, Mitchel is feeling wonderful and full of energy.

He got a new scooter for his birthday and he rides it non stop. He is getting really good at it. Michael and him are always racing each other.

I will be taking Mitchel in for his HAMA blood draw this week. He doesn't know yet, he will be dissapointed about having to get stuck again in his little hand.

Hope everyone has a wonderful week, thank you for your continued prayers, we appreciate you all so much.

Love to all,

Mary

Wednesday, April 18, 2007 4:20 PM CDT

HAPPY BIRTHDAY MITCHEL!!!!!!!

Thank you all so much for all the wonderful birthday wishes. Today has been quite a celebration for Mitchel. We started out with him opening presents, he did not want to wait until tonight (can't imagine why) and then all of us went for donuts this morning and then the kids went to school. I took popcycles up to school so Mitchel could celebrate there and tonight we will be celebrating again.

He already celebrated in NY with our friends and this weekend he will have another party at Grandma and Papa Bud's house. He is very excited about that.

The boys are enjoying this beautiful weather, it has been incredible. They are both anxious to swim again.

I got all of our travel arrangements for our next trip back to NY. Mike and Michael are coming along also. Mike will stay for the scans and leave after one day of treament and Michael will stay for the whole week. I am so glad he is coming too, he feels left out when he doesn't get to go. The flights sell out quickly for the cheaper price so I try and get them early. Now I can put those thoughts aside and enjoy my 8 weeks home. This will be our first 8 weeks without interruption at home. Yeah!!!
(We will be going on June 7 - 15)

Hope everyone is having a great day! Thank you to everyone who continues to faithfully pray for our family, we have truly been blessed to have your support.

Love to all,

Mary

Saturday, April 14, 2007 11:50 AM CDT

We are home!!!!

MRI is clear no evidence of Neuroblastoma!!!!!!!

We made it home at 2:30 am this morning. What a long day yesterday was. Our flight left NY at 3:30pm right on time but half way home they made an annoucements that Dallas was having severe storms and we would have to go to San Antonio. So we turned south and landed in San Antonio, we stayed on the runway for about two hours, finally we made it back to Dallas the storms seemed to be gone by then. As we got off the plane the next flight we were booked on was leaving in 10 minutes, they said we probably would not make it but we ran all the way from C6 to C24 and made it on the plane. Got seated in the back and finally we were heading home but there seemed to be a problem with that flight too. They were short a flight attendant and had to wait for one to land on another flight and come aboard ours. Two hours later we got a new flight attendant and we were finally heading home.

The first 10 minutes of the flight were like riding a roller coaster, my stomach was in my throat. As I sat there with my eyes closed I listened to Mitchel giggle and say wheeeee! This is fun!!!!. I could not help but start laughing and before we knew it the ride was over. Mitchel was such a trooper through the whole ordeal. Last night on the plane as we were bumping our way home his little hand held on tight to his last red life saver, he said he was saving it for his daddy.

God blessed us through it all, Mitchel's Grandma Sherri was our flight attendant from NY. What a treat that was, she made sure Mitchel got everything he wanted. While we were in San Antonio she brought him a chicken salad and he was able to eat dinner. Thank you Sherry for everything it was so great to see you.

Thank you for all your prayers and encouraging words, we love you all,

Mary

Thursday, April 12, 2007 5:54 PM CDT

THANK YOU ALL SO MUCH FOR ALL YOUR ENCOURAGING WORDS! FOR SOME REASON THE INTERNET AT THE HOSPITAL WOULD NOT LET ME READ THE MESSAGES ON THE WEBSITE, SO I THOUGHT THERE WASN'T ANY. I SHOULD HAVE KNOWN HOW MUCH WE ARE LOVED!

ANYWAY, MITCHEL'S TREATMENT TODAY WAS HORRIBLE, BUT THE GOOD NEWS IS THAT HE IS CURRENTLY UP AND FEELING PRETTY GOOD.

WE HAVE BEEN CONTACTED BY A FRIEND OF A FRIEND HERE IN NY AND SHE MADE ARRANGEMENTS FOR US TO HAVE DINNER TONIGHT TO CELEBRATE MITCHEL'S BIRTHDAY. OUR FRIENDS THE GUERRA'S ARE GOING WITH US, MITCHEL IS EXCITED ABOUT HAVING A STEAK TONIGHT.

THANK YOU BARBARA SO MUCH FOR YOUR INSTANT FRIENDSHIP!!!!!

WE WILL BE HOME TOMORROW, YEAH!

LOVE TO ALL,

MARY

Wednesday, April 11, 2007 1:33 PM CDT

Happy Wednesday,

Mitchel is now sleeping off his treatment. Today went pretty well, he screamed alot out of frustration. At one point to yelled out how he wished everyone at the hospital would be fired. Bless his heart he just wants to go home.

He had his MRI this morning and it went pretty well. He only cried when they injected the radioactive dye into line IV, he is very protective over it because it sometimes hurts.

We should find out the results in the morning on that.

Last night he woke up around 8:45 and ate dinner then played until 12:30. He was back to his old self, loving and the cutest thing.

We are both ready to go home on Friday, won't be long now.

Thank you all for your prayers, we love you.

Mary

Tuesday, April 10, 2007 11:01 AM CDT

Day two...

Well today was worse than yesterday, he screamed so much and let everyone know how he just wanted to go home. I am not sure at this point how I keep from wrapping him up and just walking out, it is so hard to hear him cry for mercy. The pain seemed to last longer today than yesterday and he was equally frastrated and angry at the same time. He is now sleeping it all off, thank goodness it's over for today.

Tomorrow he will sleep in, we don't have to be here until 10:30 for his MRI scan. I am hoping tonight he will feel like doing something fun to lift his spirits.

Yesterday he got up pretty early after treatment, it was around 4:30 pm and he stayed awake until about 10:30 pm. He played with his friends and had a incredible appetite. He asked for steak and corn then later he wanted cheese pizza and steak and corn again. In between that he ate sugar cookie doe and 3 popcycles. This morning he told me how happy he was he did not throw up yesterday, I am too, it always upsets him when he throws up.

Yesterday I spoke with Dr. Kushner about Mitchel's next scans for June, he scheduled them before his 3F8 week which brings us back to NY early for an extra 3 days. We do everything we can to spend as little time here as possible so as you can imagine I tried to scheduled the scans during his 3F8 week, which we have done before with no problem. Anyway, Dr. Kushner came in this morning and explained why he wants Mitchel's scans done before the 3F8. He wants to evaluate the scans before the 3F8, he is looking for those mysterious spots again on the MIBG, he said based on those scans he will determine whether Mitchel will continue with the 3F8 or not. He does not want to put him through another week of treatment, especially through the pain part of it if the scans continue to show something suspicious. So again we wait and wait to see if the scans are clear, another roller coaster ride, yeah! NOT!

It will be nice to have 8 weeks at home, but we wish the fear of the scans showing something was not in the back of our minds.

Mitchel just wants to be free from all of this, he is really starting to wonder why he has to go through all of this. He wants answers.

His birthday is coming up soon and we are keeping him focused on that for now, he is really excited about turning 6. He was diagnosed when he was three and it has been 3 years now that he has been dealing with all of this, he is starting to resist everything. He ran this morning from the nurse when she tried to hook up his IV, I had to get him from the playroom and bring him back.

We know this treatment has given his best chance of surviving through this and we would do it all over again if we had to, I guess I am just venting my frustrations along with Mitchel.

Please pray this week will go smoothly and his MRI will be clear tomorrow.

Love to all,

Mary

Monday, April 9, 2007 10:22 AM CDT

Update: 1:40 NYC
Mitchel is done with his treatment for today, he is sleeping it off now. He needed 3 rescues and did alot of screaming. His little hand was holding on tight to mine through the whole treatment,the pain came in waves the worse the pain the more he would squeeze then as the pain began to let up he softly whispered mommy and then fell asleep. His nurse Cat rubbed his feet and my other hand rubbed his stomach, which is where his pain always is. I am sure he will be asleep for the rest of the day and into the night. We are both glad today's treatment is over with.

Hello from NY,

We made it in around 6:30 pm, our flight went very smooth. After arriving we went over to eat and enjoyed a nice dinner. Mitchel was very hungry, he never eats good when we travel all day.

We are getting ready for his treatment, so far this morning he has been feeling pretty good. The easter egg hunt around office has cheered him up. He has a basket full of eggs. He cried and screamed so loud when they put his IV in, it was so painful. But now he is happy sitting in my lap watching cartoons.

Today he was weighed and measured for his height. He actually gained a little. Height - 119.7 cm and Weight 19.9 kg. The only scan he will be having this week is the MRI of the spine and head. His next scans and bone marrow will not be until his next trip for 3F8 June 11.

This will be Mitchel's 12th cycle of 3F8, he only has 3 more to go after this. His last treatment will be in October unless he reaches HAMA first. Finally the end is in sight, Mitchel is so happy about this.

Thanks for checking in on us, please pray his pain today is not too bad.

Love to all,

Mary

Friday, April 6, 2007 1:17 PM CDT

BRRRRRRR! It is cold here. We are all getting our jackets back out again. Yesterday it snowed for about 2 hours, we could not believe it.

Everything is going pretty good. Mitchel is being great about taking his shots, he has continued to go to school and feels wonderful.

Mentally I feel we are both ready for our trip back to NY, we know it has to be done so we just want to go and get it over with. It has helped alot for Mitchel to know it will only be for 1 week instead of 2 like before. Michael is happy that daddy is staying here with him, he loves having daddy all to himself.

I will update again from NY, we will be arriving around 6:00 pm, hopefully our stop in Chicago will not have any delays I haven't checked their weather yet.

We wish everyone a wonderful Easter,

Love to all,

Mary

PS I added some new photos, just click on view photos.

Tuesday, April 3, 2007 9:31 AM CDT

Happy Tuesday,

Sorry for the delayed update, we have been very busy. Over the weekend we had Michael's birthday party, it turned out to be so much fun. We had 17 kids here and they all had a ball.

Mitchel is home today, I think he is tired from all the parties this weekend. Sunday we drove up to KS to another birthday party for our niece. The kids went fishing and ran around all day. Mitchel called me from school yesterday and told me he was tired so I picked him up early and I thought today would be a good day for him to stay home and rest. Last night he complained about having a headache but this morning he is himself again.

This morning Mitchel and I had a talk about going back to NY, he told me how much he hates that hospital. He knows what is coming and wants to run away as fast as he can. Who would blame him, but he continued to be a trooper about the whole thing. Tomorrow he starts his shots again, please pray that will go smoothly. They have increased his dose amount just a little because he has gained weight, hopefully that won't give him additional side affects.

We are celebrating Easter this Saturday since we have to leave on Sunday. Both boys are looking forward to the big Easter egg hunt. They won't care if we celebrate Easter a day early.

Thanks for checking in on us,

Love to all,

Mary

Tuesday, March 27, 2007 5:23 PM CDT

Happy Tuesday,

Mitchel wanted everyone to see our newest family member, it is Tippy the Turtle. He is very excited about it, he has always loved turtles.

He knows all the rules about not touching the turtle, no exceptions. He wears his gloves when we take tippy outside for a little sunshine.

The boys have taken up tennis and they love it. They both got Spongebob tennis rackets and have been playing several times a week.

Hope everyone has a awesome week!

Love to all,

Mary

Saturday, March 24, 2007 2:49 PM CDT

Happy Saturday,

Sorry I have not updated in a while, time has been flying by so fast. We have been enjoying our spring break, the boys of course love being home with mom. We decided not to go anywhere for spring break and just stay home since we travel so much anyway. We have all enjoyed being at home so much.

Last Saturday we discovered a broken pipe in our wall which caused a minor flood in our house. The boys room was the worst hit with water, the wood flooring in their room and all the way down the hall has been pulled up and we have these huge blowers in their rooms trying to air out the walls. It has been interesting living on concrete floors and having equipment everywhere. I am really hoping the new floors will be put in next week. The guest bedroom is also being dried out it had water damage as well. Our room was livable right now but they will be putting new carpet pads down soon and have to move everything around. The boys are sleeping on a blow up bed in the living room and they love that.

I try to learn from the kids during times like these, they just keep playing and smiling having fun. No worries! There is not anything I can do about it anyway, things just happen.

I got all of our flight arrangements made for our next trip on Easter Sunday. It is so nice to know we still have two weeks left at home before returning to NY, Yeah!!!

Mitchel is doing incredible, feeling great and he looks wonderful.

Thank you all for checking in on us, we are so humbled by your prayers.

Love to all,

Mary

Thursday, March 15, 2007 5:30 PM CDT

Hello everyone,

We have been so busy ever since we returned from NY last week. The boys are so excited about Spring break next week, actually it started today they are both out of school tomorrow.

Mitchel is doing great, he has been playing really hard outside with Michael now that the weather is so nice. Their favorite things are jumping on the trampoline and playing baseball. It is so nice to finally have great weather and they can go outside, we were all getting cabin fever there for a while.

We received an e-mail from Dr. Kushner today about his urine tumor marker test. He put, Normal - Great results!

Just like that short and sweet. We also received another e-mail the other day from him saying they would probably NOT scan Mitchel the next time we are there for 3F8 in April. The spot on his pelvis seems to be nothing, if was so faint you could barely see it and the CAT scan of the pelvis came back clear twice.

Today I took Mitchel in for his hearing aides to be fitted with the new ear molds Dr. Moore ordered. They are different in the way they fit inside the ear. He wasn't happy about having to wear them, he cried and crawled under the chair. He would never say whether they were to loud or not until we got out to the car and he said they were to loud. I told him we could adjust the volume and he just said ok. I know I got my work cut out for me trying to get him to wear them but with his hearing loss he really needs to wear them for school. Dr. Moore wants to check him in 3 months to see if there is any change in his hearing.

That is really all from the Baughman gang, we are just getting ready for a great Spring break!

Love to all,

Mary

Friday, March 9, 2007 4:09 PM CST

UPDATE 6:53 pm - I got a response from Dr. Kushner, I sent him an e-mail asking if Mitchel would stay on the 3F8 schedule and his response was, I believe so. That was not the most definite response but I guess it means yes. Anything but chemo!

So that puts us back in NY for 3F8 on April 8.


Got a call from Ronnie at Dr. Kushner's office and here is what she said:

Bone marrow - no evidence of neuroblastoma
CT Scan - no evidence of neuroblastoma
MIBG - still showing abnormalities in same area but slightly improved.

I asked if we stay on the 3F8 schedule, she will be asking Dr. Kushner and getting back to us.

I think I will e-mail him about that.

Thank you for your prayers!

Mary

Thursday, March 8, 2007 1:20 PM CST

We are home again!

Short trip this time. Still have not heard anything, however, I did call Dr. Kushner today, he was not available but his assistant told me he could meet with us tomorrow, I told her we were already home. She checked and the preliminary report was in but Dr. Kushner wanted to wait for the final report so he would be calling us soon. I know the best thing is to see all the tests results so they can make the best decision as to what is going on, but it is soooo hard to wait.

Mitchel is doing great, he got to participate in a basketball style function last night in the RMH playroom, it was really fun. He was a little sore at first from his bone marrows, but just kept on playing.

Anyway, thanks for checking and for your prayers!

Love to all,

Mary

Wednesday, March 7, 2007 2:43 PM CST

Well we don't know anymore information about his scans than before, we did get to see Dr. Kramer during his bone marrow biopsies but she did not know any new information. They have to look at the scans and will call us when they meet with the radiologists.

Both Mike and I got to go in with Mitchel during his MIBG scan, there was a spot showing up in his pelvis area but we have no way of knowing what that means as far as the scan.

So we are back to waiting for the results, hopefully it won't be long. She did comment on how well Mitchel is feeling and looking, his counts are beautiful!

We will be leaving in the morning early 6:00am flight. We will all be sleeping on the plane I am sure.

We will keep you all informed as we know what is going on, thank you for your prayers!

Love to all,

Mary

Tuesday, March 6, 2007 11:58 AM CST

Hello from NY,

We made it in last night around 6:00, Mitchel slept all the way from Dallas to NY. He was excited to see his friends again at the RMH.

This morning we were up early and got to clinic at 7:00 am. He drank his contrast right up and then came the hard part, his IV. It took them 3 tries before getting it in his hand. For some reason they always want to try his arm first and that usually doesn't work, poor Mitchel he was screaming so loud.

His CAT scan went by pretty fast, he cried a little when they injected the contrast because he had to put his arms above his head for the scan, that always makes him feels a little nauseaus.

We have one more appointment this afternoon then it is off to ToysRus. He is very excited about that.

We will keep you all informed as things go along, we did not get to see Dr. Kushner yet but I hope we will see him before we leave.

Thank you all for your prayers,

Love to all,

Mary

Thursday, March 1, 2007 1:31 PM CST

Happy Thursday,

Everyone seems to be feeling alot better, boys are back in school, yeah!

Michael was so ready to get back to his friends and Mitchel was eager to see his teacher again too.

Michael was the one this time who could not shake this virus, I ended up taking him to the doctor on Tuesday and they did a blood test on him to see if something else was going on. Everything looked great, just one of those annoying colds. He had to have blood drawn from his arm and that was quite the experience for him, he was so frightened about the whole thing, it was hard to see him be so scared. He has a whole new appreciation for his little brother now and what he has to go through.

This morning Mitchel had his hearing checked and my suspicions were correct his hearing has gotten worse. Especially in the left ear and a little in the right ear. It is mainly the high frequency sounds. I really noticed a difference in his hearing ability after he had tubes put in for ear infections. The doctor this morning told me she did not think it was from the tubes so could it be from the chemo he has had in the past. The doctors in NY say that the hearing loss from chemo is at it's worst just after you have chemo and not long term afterwards so we are a little confused as to why he would be experiencing a significant amount of hearing loss now. He has not had any chemo since Aug of 05, she was a little concerned about the possibility of his hearing continuing to get worse in the future and wants to check him every 6 months.

She adjusted the sound in his hearing aides and ordered him some skeleton ear molds for his aides as well. The ones he has now completely fit into his ear with a little opening and she said these could help with high frequency sounds but block out the other sounds that he can hear on his own so it would make it sounds like he is in a tunnel. This is what he was experiencing before so he did not like to wear them, I hope this will help.

We will be leaving on Monday and be gone through Thursday. I will keep the website updated while we are there. We are praying for clear scans!

Love to all,

Mary

Thursday, February 22, 2007 11:59 AM CST

Happy Thursday,

I just want to start off by saying a huge thank you to the staff at Liberty Church for the wonderful card we received today. It is so wonderful to know that we are being prayed for and thought of by so many.

Yesterday was a long day Michael was home with a fever and runny nose, Mitchel was feeling pretty good. But last night just as I was getting into bed I heard little foot steps coming down the hallway and guess who it was, Mitchel, his cheeks were red and I could tell he had a fever. Sure enough it was 103, he gladly took his tylenol and went back to sleep. So today they are both home sick, but the good news is they are glad to be home together and having more time to play together. Mitchel also has a runny nose, I am hoping this will be the extent of the sickness, fever and runny noses.

I can remember staying home with my brother and having the chicken pox, it was more fun to have someone else sick with you. From what the other parents are saying it usually lasts about 3 days, hopefully this is the case.

Last night I went to a Beth Moore bible study on the book of Daniel, it is such an awesome study. There was a verse I wanted to share with you all that has already encouraged me so much.

James 1:12 Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.

God knows we cannot persevere through our trials alone and he is there with us every step of the way, sometimes carrying us and sometimes holding our hand.

Thank you all for your continued prayers and so many encouraging words. We love you all!

Mary

Wednesday, February 21, 2007 10:59 AM CST

Happy Wednesday,

Thank you all for so many encouraging words, phone calls and e-mails we are blessed to be so loved.

We are over the initial shock and now the wait begins for the scans in March. I am waiting for the scheduler to call me so I can make our flight arrangements. Hopefully that will be today because we all know how the fees can go up everyday.

Mitchel has been feeling great and has such a awesome attitude about everything. Just about every morning I tell the boys today is a good day for a great day! Mitchel came in and told me that this morning. I think he noticed how tired I was after staying up most of the night with Michael, he is running a fever at the moment. There is alot of sickness going around at school, he must have picked up something. Other than the fever it is hard to tell he is sick, it takes alot to get him down. Of course with Michael staying home it is impossible to get Mitchel out the door for school. So this morning I did not even try he is home with us too.

We had plans to get his lab draw done today for HAMA test but it will have to wait until tomorrow, I am sure he won't mind. Hopefully Michael will feel better then.

I am taking Mitchel in the morning to have his hearing test done, I am anxious to find out the results, I have noticed him asking me to speak louder and him wanting us to turn up the volume lately. I am wondering if the position of the tubes we had put in is blocking some of his hearing. The doctors have said the damage that was caused by chemo to his hearing would have ended a long time ago, his last chemo was August 2005.

Mike and I are praying alot and we both believe in the peace that can only come from God. We know that our ability to not worry is almost impossible so we trust in God's mercy.

Love to all,

Mary

Monday, February 19, 2007 9:10 AM CST

UPDATE 3:48 pm

I just received a call from Dr.Kushner, Mitchel had two suspicious spots show up on his MIBG scan. 1)by the pelvis area and 2) in his thigh area of his left leg. He described them as being very faint spots but did not feel comfortable waiting until April to scan again, so we are returning the week of March 5 to do a MIBG scan, CAT scan and bone marrow biopsy. At the end of our conversation I asked him if he felt comfortable to wait until March and not come now to rescan, he said yes that March would be fine it is only two weeks away. As you can imagine Mike and I are devastated and clinging to hope that the spots are nothing. Please pray for us to have peace during the next couple of weeks while we wait. I am glad Mike is going with us, not a trip I want to go by myself on. I guess the hardest part is telling Mitchel that we have to return earlier than planned and he knows he will have a buddy put in (IV), he won't understand about the spots showing up on the scan so we won't tell him.

Happy Monday!

Things are off to a great start this week. We had a very relaxing weekend, finally the weather is starting to warm up a bit and the boys got to play outside some.

I e-mailed Dr. Kushner Friday and have not heard back yet about the MIBG. Hopefully today we will here something, but again I feel confindent the scan was clear otherwise we would have heard by now.

The boys are beginning to plan their birthday parties, Michael's is in March and Mitchel's is in April. So far Michael wants a Luau and Mitchel wants a Spiderman party. It will be fun planning them both.

God has been so good to us through this long journey, we have endured alot of struggles but have always kept our faith. Thank you all for your continued prayers, we are so encouraged everyday to keep going.

Love to all,

Mary

Thursday, February 15, 2007 9:24 AM CST

We are appreciating our home so much these days, the long break will be so good for us all.

Mitchel is doing so awesome, he has been going non stop since we returned home. That is probably why he has decided to stay home and rest today, he is a little tired. I thought for sure Monday would be the day he would stay home but I know he does enjoy school so much and did not want to miss. I will enjoy spending time with him today, I am sure he will several projects for us to do together.

Yesterday I went to both the boys valentines parties at school, they were great! Mitchel went with me to Michael's party. Michael was so proud to introduce us both to his class, he talks about his brother all the time at school. They both received lots of goodies and enjoyed reading all their valentines.

Mitchel has a new thing he says to Mike and I, "I love you all the way to planet pluto". This is so sweet and so cute, our hearts melt everytime he tells us. He tells us both how much he loves us all the time, just out of the blue he will say "I love you".

Well I better get going to the first project with Mitchel, giving our dog a bath, oh boy what fun!

Love to all,

Mary

P.S. Since I have not heard from the doctors about Mitchel final MIBG report I am just going to assume that everything is clear! Thank you God!

Sunday, February 11, 2007 7:01 PM CST

10:04pm - I forgot to mention that we have not received a final report on Mitchel's MIBG Scan. We have not received a call yet so I guess no news is good news.

We made it home Friday night. Already NY is fading away in our minds.

Mitchel has not wasted any time getting his energy back, he has playing with Michael non stop as usual.

Tomorrow it is back in school and he seems to be ready.

We will not return until April 8 so we will be enjoying our time at home.

Love to all,

Mary

Thursday, February 8, 2007 6:10 PM CST

Coming home soon.....

Tomorrow we will be coming home, Yeah! I cannot tell you how anxious we both are about that.

This trip has been hard on us both, emotionally on me and physically on Mitchel. Today's treatment went pretty well, he did have pain but did not seem to last long. He vomitted twice just before the pain kicked in and was very upset so that did not help matters. I don't know what is going on with the vomitting, that was the first time he had vomitted all day and so far now it has been the last time. Maybe something in the 3f8 or I even started to wonder if it wasn't the sski drops he had to start yesterday day for 3 days. I gave him his drops for today in his juice that he drinks with his tylonel right before 3F8 and then shortly after he vomitted so I asked Ester for a fresh dose for tomorrow. Your mind starts to wonder so much when these things happen, one theory after another.

We got our schedule for our return trip, unfortunately it will be on Easter Sunday, we received permission to extend our break for 9 weeks instead but as Mike reminded me that would fall during Mitchel's 6 birthday and we know that would be terrible for him to spend his birthday in the hospital getting 3F8. Last year he was here and we were determined to have him home this year.

No official word yet on the MIBG scan, I could not see anything that looked unusual. Hopefully tomorrow we will find out something.

We appreciate all your prayers!

Love to all,

Mary

Wednesday, February 7, 2007 5:57 PM CST

Another long day...

We are both ready to get home! This week has been so different from any 3F8, or maybe I just don't remember all the side effects.

Mitchel started out this morning very early, we were at the clinic by 8:10 am and things moved along pretty smooth. After his treatment he started throwing up and it continued on all afternoon. He was so sick and just crying because he did not feel good. He had a appointment at the nuclear medicine dept. for his injection for tomorrow's scan and that took about an hour so we did not get back to RMH until 2:45. Still throwing up I called the nurse practitioner and we discussed the possibilities of what could be causing the vomitting. I gave him a dose of vistril and that came right up. He went to sleep and slept until 6:00, thank goodness he woke up hungry and asked for a steak. I ran down to Finnegans and picked up his dinner, so far so good, hopefully the vomitting is over.

Emotionally this trip has been so hard. Mitchel has learned how to really express himself and he cries asking why do I have to have this treatment. I hate this treatment over and over again. He even kicked at his nurse this morning as she was wanting to hook him up. I know he does not mean to be that way he just can't help it he is so upset about having to be here. We have not been out of our room at all this whole week other than me running down to the corner to pick up food or down to the kitchen for something. It is really hard coming by ourselves, but we will be home soon and I think we will have a 9 week break. They are suppose to let me know the schedule tomorrow, an 8 week break falls on us leaving on Easter Sunday, at this point I just don't think Mitchel should have to miss out on any holidays if at all possible, he doesn't want to come here anyway and that would just make him feel worse about coming.

He is on his eleventh round of 3F8 and before he had 2 rounds of high dose at the beginning, so he is really tired of it all. He just doesn't understand that he has cancer and this is the best treatment for him. The good news is that once we get home this all seems to fade away and he carries on like it never happened. Thank God!

Well we are counting down and we have 2 sleeps left before we come home. Yeah!

Mitchel's MIBG scan is tomorrow at 11:00 am so he will again be on the afternoon shift for 3F8, another long day!

Thank you all for your encouraging words we appreciate them so much.

Please continue to pray for Mitchel, he is so brave!

Love to all,

Mary

Tuesday, February 6, 2007 4:23 PM CST

Day two is finally over....

Yesterday we did not return back to RMH until 6:15 it was such a long day, his oxygen levels would not stay above 91 without oxygen blowing in his face so they kept him a little longer. They never really know what causes that to happen, today he was just fine and we got back here around 5:00.

We did get another late start today being on the afternoon shift, things got going about 2:30, we arrived here about 12:30 thinking we would not have to wait for long, but I guess they were just busy today again. Tomorrow we are on the morning shift, Mitchel has a MIBG injection at 1:45, so we will be there bright and early at 8:00.

Today's treatment went pretty good, his pain hit hard and fast but did not last long, he has been getting by with just two rescues of pain medicine.

Yesterday the weather was 17 and today 24 degrees. It feels like we are in Alaska, the wind just cuts right through you. Luckily yesterday we caught a ride on the RMH van back to the house. I think they should have a shuttle bus to and from the hospital all day long, that would be so nice.

Mitchel is starting to really be upset with the treatment, he stated today that he was not returning tomorrow for his treatment. He cries about it more and wants to know why he has to do this horrible thing everyday. He just wants to be at home living a normal life, talk about having a lump in your throat, I was at a loss for words. I just kept telling him it will be over soon and we will be going home. Not good enough he wants to go home now! He is getting older and starting to express himself more clearly, so I guess this is part of it, I am going to have to come up with a better answer so please be praying that I will know what to tell him tomorrow.

We are now back at RMH and he is sleeping, he will sleep until about 7:30, wake up to eat a little something then go back to sleep for the rest of the night.

Thank you for all your prayers and encouraging words.

Love to all,

Mary

Monday, February 5, 2007 1:19 PM CST

We made it in last night around 9:00pm, it was a very long day yesterday and I have a feeling today will be just as long. It is 2:20 and we have not started his treatment yet. They just gave him his vistril and things should be moving along from this point. Hopefully!

The vistril is for his hives he could get from his treatment, just a precaution I guess.

We have been waiting around all day since about 9:30 so we are both very tired at this point. Mitchel did get to spend the morning at the playroom and he enjoyed that.

The doctor just came in and checked Mitchel over before he starts his treatment. I got the final reports from him, which we already knew but it was nice to see the reports for myself. All biopsies and aspirates came back negative on his bone marrow biopsies. His urine markers are VMA - 8 and HVA - 15 these are the lowest they have ever been so this is excellent news. They can track tumor activity in his urine with these tests.

His MRI and CAT scan all came back normal, NED!!!

Getting all these good results makes it so hard to keep bringing him back for more painful treatments, but we are convinced that it decreases the chance of him relapsing. So we will continue on this road until December or he reaches HAMA.

Mitchel's counts are as follows:

WBC - 13.5
RBC - 4.78
HGB - 13.7
Platelets - 238,000

These are all excellent!

It was really hard to return this time, Mitchel does not seem to mind that much but for me it is much harder. Some days I feel like I have aged 30 years since this whole thing began.

Well it has taken me a while to complete this update, Mitchel's pain started and finally he is resting peacefully. His pain was pretty bad but it was expected since he has not had this treatment in 8 weeks.

The weather here is so cold, it was brutal walking to the hospital. At one point I could not catch my breath the wind was so cold, my face was numb.

Thank you all for your continued prayers and encouragement.

Love to all,

Mary

Wednesday, January 31, 2007 10:43 AM CST

Happy Wednesday,

Well today is the day we crawl back into the cancer world. Mitchel will be getting his first injection of the GMCSF to prepare his body for the 3F8 treatment. He will have one everday for the next 10 days. He cried in daddy's arms and said he did not want to have any shots, no way! Bad shots! It was heartbreaking for both of us as we tried to explain why he needed these shots. It is hard for Mike and I to understand, I can't imagine what goes through Mitchel's little mind. Especially when he is feeling so great and looks great, we try and explain that he has an illness that needs continuous treatment. But I am not sick so why do I need those shots?

Our source of comfort and answers can only come from God, he will provide us the wisdom in these situations and help us come up with the perfect answers that will help Mitchel understand. Please join us in prayer as we begin this journey again.

It is snowing again! Ugh, we are getting very tired of the snow!!!! I was hoping the weather in NY would be a little warmer next week but no such luck. It is very cold there right now.

Thank you all for your continued prayers! We will be keeping you updated as we begin our journey to NY. Mitchel will have 5 days of treatment and a MIBG scan that was rescheduled from our last trip. All tests came back clear just a few weeks ago so we are encouraged that his MIBG scan will clear as well.

Please keep our friends the Beamons in your prayers, they just got the news that their daughter, Madelyn, relapsed after having 9 months off treatment. They are entering the chemo world again and they need alot of encouragement right now. www.caringbridge.org/tn/madelyn


Love to all,

Mary

Friday, January 26, 2007 10:16 AM CST

TGIF!

Finally the snow has stopped and everything is melting. There is still snow in the grass and some streets, but we have had sunshine everyday this week.

The boys are completing a full week of school today and they have began to get into a routine again. They are both feeling great, full of energy.

Mitchel will start his injections next week, ironically it is on the same day his class visits the hospital here for a field trip. Not sure how excited Mitchel will be about that. His teacher was a little concerned about Mitchel going on the field trip, she did not want to upset him. We have not decided if he will go or not, they will be looking at a video of how tonsils are removed and how a patient is prepared for the procedure. Who knows Mitchel may step in and show everyone how things are done. He certainly has the experience.

It is so hard to think about taking Mitchel to NY to receive such a painful treatment especially when there doesn't seem to be anything wrong with him. He looks so good and feels so great and then to see him lay on a bed at the hospital screaming in pain and his little body being pumped full of drugs to keep him from feeling all the pain. My head starts spinning with just thinking about it. I am praying that God will replace those fears with peace and joy. God is so good!

Hope everyone has a wonderful weekend!

Love to all,

Mary

Saturday, January 20, 2007 12:29 AM CST

Is it ever going to stop snowing!

The snow flakes are getting bigger and bigger, we already have snow in the ground that is covering thick ice.

The boys were out of school all week. I have thoroughly enjoyed having them here, maybe I am a kid too because I truly enjoy playing with them. The more time I spend with them the more I hear their little ideas and how they handle their everyday issues. It is so cute what goes on in those little minds.

Yesterday we were talking about how slippery the ice was and how you could fall down and crack your head, I was trying to explain that walking on ice and snow requires them to pay attention and be careful. That conversation started alot of questions, beginning with "mom have you ever cracked your head" I answerered "yes, when I was your age I fell down playing a game outside and hit my head on a rock". Boy little did I know the questions would go on and on, they were so curious how that all could happen and how they sew it up and if I was okay now. They wanted me to show them the crack on my head. Even when I tucked Mitchel in to bed last night he asked me "mom where was I when you cracked your head", I could not help but smile and tell him he was not born yet, which led to another series of questions. I finally got him to agree that we would finish our discussion the next day.

So far today no questions about cracking your head or what does being born mean, but my bet would be they will remember soon and still have questions on those subjects.

We still have two more weeks at home before returning to NY for another round of 3F8. Yeah, I am keeping that trip as far away from our minds right now as possible. Mitchel will have to start his injections soon and I am already dreading that, I know he is.

I have noticed that Mitchel has gained a few pounds over the last few weeks, he really looks great.

Thank you all so much for your encouraging words and prayers, we are so blessed to have you continue to support us.

Love to all,

Mary

Wednesday, January 17, 2007 8:34 AM CST

Good morning,

Dr. Kushner called last night and informed us that all tests look good.

Mitchel and I will be returning on Feb 4 for another week of treatment.

The kids have been out of school for several days, the snow and ice just isn't melting. The temperature continues to stay at the freezing level, hopefully it will warm up soon and everything will melt.

The boys have enjoyed being home together, they love playing all their games and being home with mom.

Mitchel looks so good, his coloring is the best I have seen it in a long time. He is so cute with his missing teeth, I love it.

Thank you all for your continued prayers,

Mary

Saturday, January 13, 2007 1:27 PM CST

Finally we are home!

First of all let me tell you we spoke to Dr. Modak before leaving on Friday and he said the CAT scan looked all clear, nothing unusual showing up and he had not looked at the MRI yet. Mitchel's MIBG was cancelled due to the hospital not having the isotope that they inject into Mitchel that will mark any NB cells when the scan is performed. The team of doctors agreed that it would not hurt anything to wait for us to return for the next 3F8 cycle to have the MIBG scan done.

As soon as we arrived in Dallas I turned on my phone to check and see if there were any missed calls from Sloan and thankfully, no missed calls. For those parents who are reading this and have to deal with waiting for results you can understand how important that moment was to not have a missed call. If there is anything suspicious on the scans you are notified immediately. Dr. Modak said he would call us to schedule the MIBG right away at home if he felt it was necessary after he had a chance to look at the MRI and CAT scans.

We were able to catch a 12:00 flight since all Mitchel had was a bone marrow Friday morning, right when we arrived in Dallas the monitors showed all flights to Tulsa cancelled. So after waiting for our luggage that no one seemed to know where it was for two hours, we camped out at the Grand Hyatt Hotel at the airport and made the best of it, Mitchel actually loved the hotel and was not upset at all. We were automatically rescheduled to leave out this morning on a 9:10 AM flight and let me tell you the GOOD LORD was looking out for us because our flight made it out of Dallas, we were greeted by a very enthusiastic AA employee that congradulated us on being the only flight arriving into Tulsa.

When we arrived at the airport this morning there were alot of people trying to get out, of course the flight was overbooked and the FAA put weight restrictions on the flight so the airplane that could hold about 65 people was only allowed to board 32. On top of that there were about 46 people on standby trying to get out. Thank you God!

The road traveling home was a mess, solid ice and covered with a little packed snow, but we are here now and so happy.

Mike has made us chile and we are in for the rest of the weekend. They are saying that storm will hit again tomorrow and be worse. Brrrrr!

Well we will hopefully find out the test results next week, his urine test, bone marrow and a definite clear on the MRI.

Thank you all for your encouraging words and prayers, we love you all,

Mary

Tuesday, January 9, 2007 1:28 PM CST

We are home! Our trip to Disney World was so wonderful. The boys had so much fun. I cannot believe we were all in shorts yesterday. The weather there was incredible, the boys got to swim everyday.

The boys favorite ride was Jimmy Neutron at Universal Studios and Runaway train at Magic Kingdom. When we went to Animal Kingdom the boys decided they wanted to ride the new roller coaster Everest, Mike and I had no idea it was so scary, alot of dark caves and it went backwards for a little bit, anyway we all survived it and had a good laugh after it was all over.

This trip was very meaningful in the fact that we got to spend some great family time together, it was truly a wonderful trip.

Mike dropped us off and went straight to work before we leave again tomorrow for NY. We are both anxious to get the results of the scans this week, Mitchel has never had a 3 month break in between scans. We have met a few families that go every 6 months, we will hopefully get to that point in the future.

Thank you all for your continued prayers!

Love to all,

Mary

Tuesday, January 2, 2007 9:22 AM CST

HAPPY NEW YEAR EVERYONE,

The boys are completely well,we have been keeping them in out of the cold, no fevers and coughing in about a week.

They have been playing non stop with all their toys they got for Christmas. The one game they play so much is their dancing mario game. I am amazed how well they both do with all the steps, I even tried it and could not keep up.

Tomorrow we leave for a very exciting trip to Disney World we will be gone for 5 days. It turned out to be a last minute thing and we are all excited. The boys have put all their monies from the piggy banks in their wallets and are talking about what they will buy.

We will return next Tuesday and then on Wednesday we will leave for NY. Mitchel is scheduled for his 3 month scans, we will only be there for 2 days and return on Friday night. I am so glad Mike is going with us, we are staying positive about the scans but can't help but think about the possibility of the cancer returning someday. This is always a nervous time for us all.

Thank you all so much for your continued prayers, we are so blessed to have your support.

Love to all,

Mary

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