Hi everyone,

Nikolas is starting to play a little more during the day. Woo-hoo!...Still on all the same medicine and is saying that his throat is hurting now...When he gets sick, there are little chunks of blood come up, so I think the lining is sloughing off his throat a little bit. (I'm sure you all wanted to know that!)..It's not too bad tho.

He got to go shopping today with his bone marrow bucks! He was pretty excited about that, he had $57! Got some new toys. Daddy took pictures and will post them. He is also still getting glow sticks after every Neupogen poke at night. He thinks those are pretty cool.

He had to get platelets again last night. Which wasn't a big deal. He was asleep when they did them. He napped from about 4:30 to 8:30 last night and then was up til a little after midnight!! He's kind of getting his days and nights mixed up...

We had some visitors yesterday. Regan and Lisa Hulsing stopped by. Regan was here for some tests. Regan played Uno Attack with Nikolas:) He enjoyed that! Thank you. Tyler Harris is also here, so please pray from him and his family. He was admitted due to a fever of around 105!
His dad has stopped by and visited and Tyler let Nikolas borrow some of his playstation games. The Simpsons! Pa would like that!

Other then that, there really isn't any other news. Thank you to everyone for the thoughts, prayers and messages. This has been a long haul so far! But things are turning around:)

Love to all,

Posted Sep 24, 2008 9:42am

Hello Family & Friends,

The Doctors were just in this morning about the time I had thrown up. Still throwing up about 5 times a day or so. They scheduled me two more medicines for my belly(benadryl and ativan). They up'd my morphine the day before to make my mouth feel better. Also I am still getting all that medicine in my line from before and have still not felt much like eating or drinking anything. My counts have not moved, still towards the bottom. But I did take my ursidiol last night at least 2ml of the 8ml, and did not throw it up. Let me just say I don't know how long I can hold off but so far I still have not gotten a NG tube in my nose. And that, my friends and family, makes me very happy. Last night started my Neupogen pokes again in my legs. And yes I did not forget that I did not really like those either. But when I was done I did get a purple glow stick which was fun last night in the dark. Also from what I hear I get a glow stick for every poke of Neupogen.

My days I am sleeping most of the hours in them for now, I wake up and then fall asleep and then repeat. What I do enjoy is getting up at 11 to go to the play room with Kathy from Child Life for an hour. We make cool things and play games. At 1 to 2 I get to do preschool with Sue except for Wednesdays. We also make things and learn about new things. Yesterday learned about seasons (we are in Fall now). On Friday I get to spend my Bone Marrow Bucks. Child Life has these great big dollars, I do mean big, I get for being such a brave little boy in things like taking some of my medicine when it does not taste so good or brush my teeth when it hurts. I got to cash in my Bucks last Friday, I got some cool toys, and am looking forward to the Bone Marrow Bucks store this Friday.

Thank you for all the messages left on the Care Pages and for the ones that make the longer drive to Iowa City. The text messages, e-mails letters, cards and everything else is just wonderful also. Your thoughts and prayers make it a much more enjoyable stay here in the hospital. The Doctors, Nurses, Child Life, and all so many volunteers make this a wonderful place to be(for a SHORT stay :)) You are all wonderful people and just want to say Thank You over and over again. Thank You.

Love to All,

Posted Sep 22, 2008 10:58am

Hi everyone,

Things are moving along here...Kind of went downhill a little, but that is expected. He is now on continuous Morphine for the pain in his mouth. They just increased this morning because he has been waking up the past couple of nights crying because his mouth hurt:( He hasn't ate anything for a few days and only taken a few sips of juice...He has been throwing up about 5 times a day. Some days a little less...His IV pole is flooded with pumps and bags! He is on Morphine, CVN & fat for nutrition, fluids, cephapime(antibiotic), zophran for nausea, benadryl and ativan as needed for nausea, ursidiol by mouth to help protect his liver from the chemo and nystatin to try to help his mouth from the sores, and he starts the Neupogen tomorrow which is the shots to help his white blood count recover...Um, I think that's it!! He has basically no white blood count right now, his platelets are really low also. He should be getting some of those either today or tomorrow. They are at 22 and below 15 is when they give them. The past couple days he has laid in bed most of the day, except for a few hours he gets up and tries to play...Last night we went to the playroom about 8 and played Uno and Sorry until about 10. That was the first time he had been out of his room all day.
He has had some visitors the past few days. Grandpa Machin(my dad) came Friday evening, Aunt Tammy, Uncle Chad(my brother), Kaitie and Kenna came on Saturday evening, Grandma(my mom)and Pa came yesterday and so did Uncle Larry(Jimmys brother) and Aunt Jeanie. Nikolas enjoyed all the visitors. It gets kinda boring on the weekend because there is no child life and no preschool. And mom and dad get boring after awhile! lol...We will see how the childlife time and preschool go today. Hopefully he at least feels up to going to those.
Well, I think that's about it for now...Thank you for all your messages, thoughts and prayers. He is a trooper. Hope everyone is well....

Love to all,

Posted Sep 18, 2008 10:55pm

Hi everyone,
Today went great! They came about 2, Jimmy was a little off on the time from the post yesterday. :) The Child Life people and social worker came in and they had made Nikolas a sign that said "Happy Transplant Day, Nikolas" on it, in John Deere green. (Papa would be proud:)) They also brought presents for him! He was pretty excited! They are great here! (But we also miss Blank:( We loved the people there too!!) Anyway, Then the nurses and Steve came in to re-inject the stem cells. The cells were in a small bag and were clear. Said they were clear because of the process they went through. They hung the bag on an IV pole and hooked it up to Nikolas' Hickman, which is the line in his chest. It went by gravity, not through an IV pump. Took a total of maybe 10 minutes to re-inject them. They warned us that the preservative that was used to store his stem cells would smell like rotten garlic and they cut up oranges and set them around his room!! When they started re-injecting the cells, the smell was almost immediate, and they weren't lying!!! It is a horrible smell! Said it would smell like that for a couple of days. It's on his breath and comes out through his pores too. Wow is it bad!!! The oranges don't really work! lol...The nurses then did vitals frequently for a couple of hours after to make sure he wasn't having a reaction. He was fine. It will take several days before they will know if his cells are engrafting and if he is accepting them. There is a chance that his body could reject his own stem cells, but we won't think about that, and I don't know what they do if that were to happen. I don't think I want to know the answer!
He is still sick, but not too bad. He only got sick once today and he has a lot more energy today. But the worst is yet to come. They said his mucous membranes in his mouth and all the way down to his rear will slough off and will be raw and he will most likely end up on morphine at some point. His counts are dropping, but are not to the point of bottoming out yet. His white count is pretty low. Will be starting back on the Neupogen shots next week sometime. Not looking forward to that!
Right now we are thankful for the good day! There haven't been many bad ones lately, which has been a blessing! He's bounced back great from everything thus far! Pray that is still the case now! He is a fighter and a trooper and the love of our lives! This obviously isn't something we wanted him to have to endure, but still thankful...Thank you all for the continued prayers and thoughts...We posted a few pictures from today on here. He thought it was pretty funny to breath in everyones face with his "dragon breath"!!! But I think Mommy got the most of it!!! lol. Hope this post finds everyone well. Thank you again!

Love to all,

Posted Sep 17, 2008 12:36pm

Hello Family & Friends,
Another day down and done. My Chemo for this round was done at 11am this morning. This Chemo has caught up to me. It has made me very tired and I sleep a lot. It has also made it so that, especially last 2 nights, get sick more than I want to. I had a fever of 102.2 last night. So the nurse called the Doctor and got me started on anti-biotics. They said they will keep them going for some time. Still it was my first fever since Thursday :). I have not kept down any oral medicines or food for a bit. So when Steve and the other Doctors came in today they restated that I need to or we will have to use the NG tube. I hope not as many of you know that is the worst thing, I do not like it at all. I will be getting supplement through my hickman first.

I was not feeling well this morning and when Kathy from child life showed up to make spin art with me, even though I did get up, I did not want to this morning. Glad I did, I do feel better and am sitting in a chair watching Tom & Jerry in my room now and I also have a lot of cool spin art pictures to show from it.

I have a soon to be new friend, Tyler Harris. He is 9 and hope to meet him soon. His dad stopped by just to say hi and talk to us, he is in Club Hope, which is a wonderful club that I have not been to a meeting yet but I will. I want to tell him thank you for taking time out on his clinic visit to stop and say hi. It is nice to hear from people in the same hospital situations.

My next day is the big first Stem Cell Transplant. It is at 9 am Thursday. I have asked many questions and still do not fully know what to expect. But when the I get done with it I will let everyone know how things are going.

I can never say thank you enough to all the people out there. You are such great people. I Wish you could know how much I appreciate all my family & friends and some people I may never meet. Thank you for everything. I love the messages you leave and the prayers you say for me. Thank you. You are in my thoughts in prayers as well. God bless us all through all of this.

Love,

Posted Sep 15, 2008 10:09am

Well, he is on day #4 of the chemo...He had a chemo drug called etoposide continuous for 3 days. He had it before at Blank but was only for 2 hours a day for 3 days. So you can figure out how potent the chemo is for stem cell transplant...They re-inject the stem cells Thursday. And then we basically just wait for his counts to bottom out and recover...

He just got sick...Not sure if it's the chemo or the medicine for his liver I had to give him. He hates the taste of the medicine, so I think it was a combo of both...

He is doing well, but REALLY grumpy! But I don't blame the poor little guy. I would be too. It's hard to know when to discipline for the whining and when to let it slide because he's not feeling well.

They talked about putting an NG tube in his nose if it comes to a point when he's not eating well or taking his medicine. I hope it doesn't come to that. I think he would do anything to avoid one of those again!

Child Life comes today at 11 and he has pre-school at 1. I will be welcoming those breaks! Jimmy went to school today. Not sure how he does it, keeping up with school work and Nikolas. I plan on getting out tomorrow night for awhile. We try to take turns to keep our sanity! :)

Some of you have asked, but we didn't get a chance to go ice skating! Which is ok!!! lol.

It is Childhood Cancer Awareness Month. Please do what you can to help support the kids! Here are some stats....

Posted Sep 12, 2008 7:03pm

hello,

Nikolas is doing well. He has basically played all day!!! They started chemo this a.m. about 9. It's continuous for 3 days then about an hour for 2 days, then a break and they will re-inject the stem cells next Thursday, I think! At least that's what I remember...
They are fantastic here. They have tons of volunteers. Child Life is going to come everyday at 11 to play with Nikolas. They make crafts or fun things like that. And they also have a teacher that is going to meet with him everyday at 1 except on Wednesdays! They also have volunteers that pop in at times to see if Nikolas wants to play and to give us a break! There are also other programs, but I won't bore you with those...The ward that he is in is basically in a circle so he has been riding the tricycle around in circles all day! It's hard to keep up with an IV pole! lol. He is feeling good today, but they said he's almost guaranteed to get sick with the high dose of chemo. So, not looking forward to that...but he's in good spirits now...and he can't leave the area:( and it's not a very big area. Only about 6 rooms, if that...I haven't actually counted...

Well, I will keep you all updated with how he's doing...He is allowed visitors. Just when his counts get low they ask to limit visitors and especially kids. So, please, if you plan to visit, be healthy:) And the Iowa/Iowa State game is tomorrow, and those who don't know, the stadium is right across the street from the hospital! So tomorrow probably wouldn't be a good day to visit! :)
Thank you for the continued messages, thoughts and prayers...We are hopeful that our sweet little boy will beat this!!! Keep the prayers coming! Thank you for all your support!!

Love to all,

Posted Sep 11, 2008 4:25pm

Hi everyone,
Just letting you know that we made it and are in room 87 on the Pediatric floor 3...between elevators F and H...I will write more later. They are letting us leave for a couple hours before they start hydration at 8. Think we might go ice skating at the mall! Neither one of us has ever been so that should be hilarious!!! Poor Nikolas! lol....
Thank you for the messages, thoughts and prayers...
Love to all,

Posted Sep 11, 2008 9:39am

Hi everyone,

This post doesn't come with the greatest news...Got the bone marrow biopsy back and it's till in his marrow and they think it's actually increased...But the plan hasn't changed. They are hopeful that the stem cell transplants will get what's left in there...

We are headed to Iowa City today for our long stay. Have to be there at 1 for lots of paperwork!!! He gets admitted tonight, will start hydration then chemo tomorrow...Chemo is 6 days. So, that is all the news we have at this point...Our cell phones don't seem to have great reception, so when we figure out our room number I will let everyone know...

Thank you so much for thoughts and prayers...Our family and friends have been fantastic!!! Don't know how we would have made it this far without them!

Lots of love,

Posted Sep 5, 2008 6:45pm

Hello again!

Nikolas has been doing great! He hasn't been admitted yet to Iowa City. We went Wed for a bone scan, lots of blood tests and a urine test, and an ultrasound of his kidneys...Everything was clear! His kidneys look good and nothing came up on the bone scan!! woo-hoo! Then today he had to have ANOTHER bone marrow biopsy, which is #4 on the same two spots on his lower back area. They take a sample from each side. For those that don't know what they do, they basically take a T-shaped device and drill it into his bone and remove a piece of his bone and some bone marrow...I have to leave the room, but Jimmy stays. He said today he got a little woozy...They put Nikolas under, so it's not as traumatic. But he did wonderful. He also had a CT scan. We have to go back to Iowa City on Monday for him to have a GFR, which is a kidney function test. That will take most of the day...Should find out the bone marrow and CT scan results then also...
The plan now is for him to be admitted around Thursday afternoon, but his white blood counts have been extremely low!!! And his ANC has to be 1000 before they can start the transplants, and today it was 220! So he has a little ways to go before his counts get back up...
Also found out that this first 4-6 weeks in the hospital is only the first transplant...he will then come home for a couple of weeks, then back for another 4-6 weeks for the second transplant and radiation...ugh! I was thinking the 4-6 weeks included both transplants! That's what I get for thinking! lol...But we will make it! He has been fantastic up to now! I just can't believe he started out at Stage IV, high risk and now has nothing! It's just amazing!
We plan on going to The Heart Connection event at Adventureland tomorrow as long as he feels good! That should be fun!
Thank you all again for the continued thoughts and prayers! Don't stop now!!! He still has a ways to go!

Love to all,

Posted Sep 2, 2008 9:57am

Hi everyone,
This post comes with FANTASTIC news!!!! I got a voicemail on my phone from Dr. Al-Zein at Blank on Sunday that the MIBG scan showed absolutely, 100% negative of any disease left in Nikolas' body!!! I had to call him back to make sure that I heard his voicemail correct!!! And I did. That was the best news we could get!! And for him to call us on a Sunday on a holiday weekend to let us know, was awesome! So now we ask Nikolas about it and he says "I have no more bad germs!" lol. That is music to my ears!

He still has to go through the stem cell transplants. So not completely out of the clear... Not sure if things will change and he will just have one now, or if he will still have both of them. And not sure about radiation either, or if the treatment plan will stay the same, just to make sure? We go to Iowa City tomorrow morning for more tests, so we should find out more then. Will keep you all posted...

Thank you all for your continued thoughts and prayers!! They have definately been working!!!!

We had pictures taken of Nikolas by Amy Doerring a couple of weeks ago. She has posted a few on her website. Go to www.amydoerring.com and click on New Blog to see him. There are a couple more if you click on amazing kids on the new blog page...She is fantastic!!!

Thank you all again...
Love to all,

Posted Aug 30, 2008 12:28pm

Hi everyone,

We had a long week and are excited about the long weekend. I think I'm probably repeating myself from the last update, but Nikolas had his Hickman line put back in on Tuesday, had the dye injected on Wednesday, then had his MIBG scan on Thursday...they thought he still had some dye left in his blood, so they asked us to come back on Friday to retake them. Then maybe all the dye would be absorbed. So Friday we had to go to Iowa City at 9:30 to see Dr. Rahdi. He had lots of blood tests, urine tests, an echocardiogram and a hearing test. He cried when they started doing the echo because he was scared. It doesn't hurt at all. It's just an ultrasound of the heart. Made our hearts break because he is scared of anything they do to him. And with his hearing test, he has some high frequency hearing loss. Which they warned us in the beginning that it might happen with the chemo...So we were kind of disappointed with that. But if that's the worst side effect of all this, we will take it!!! We got done about noon in Iowa City, had time enough time to swing through McDonalds drive thru, then it was off to Des Moines! We had about 5 minutes to spare by the time we got there!
Next week on Wednesday, he goes back to Iowa City for more tests. He has a US, Bone scan and CT scan. Then we also go back on Thursday morning for another test, but I can't remember what it was!! The plan is to have him admitted on Thursday afternoon for hydration, then start the process of the stem cell transplants on Friday. Which is 7 days of intense chemo that will basically kill all the cells in his body, then they reinject his own stem cells back in him. He will basically have no immune system so he will be isolated. If either Jimmy or I are sick we are not allowed in to see him either...They will do this process twice. Not sure how much time is between each one. But we will be in Iowa City 4-6 weeks...I have been dreading this part! My head has been spinning and Too be honest, I'm scared out of my mind, and I'm pretty sure Jimmy is too, but he hides it better then me!!! So, that is the plan...If he is not admitted by the end of this week it will be the beginning of next week. Have to get all the tests done and read before anything is started...
I will keep you all updated...Thank you so much for all the support! Have a safe holiday weekend!

Love to all,

Posted Aug 26, 2008 10:27pm

Hi everyone,

Nikolas had his Hickman line put back in today. We had to be there at 5:30, yes that is A.M.!!! 4 came pretty early this morning!!! But he was in good spirits and was a chatterbox for about half way then fell asleep...He was done, out and we were back home by around 10:30! So that was awesome. He slept 4 hours in the afternoon, got up and was riding his bike. It was like he never had surgery! So, go back tomorrow to inject the dye, MIBG scan on Thursday, and not sure after that...We will be going to Iowa City for some things he has have done before the stem cell transplants. Will either be Friday or the beginning of next week, from what I understand...Will keep you all updated..
Thanks for checking in on Nikolas and me and Jimmy. We appreciate all the thoughts and prayers. Thank you all for everything!

Love to all,

Posted Aug 23, 2008 10:35am

Hi all,

Nikolas had his counts drawn yesterday. They are a little low, but nothing to be concerned with. He gets to stop his Neupogen for now, so NO POKES, at least for a little while. yeah!

This next week is going to be a busy one for Nikolas! He has a pre-op appointment with Dr. Ukabiala on Monday, then has surgery to put his Hickman line back in on Tuesday, then he has to go have the dye injected on Wednesday for his MIBG scan on Thursday, then counts on Friday!!! Ahhhh!(That's me screaming. lol) But we will make it through! Just a lot of trips to Des Moines! They are doing an MIBG scan again to gage where the cancer is left in his body before we head to Iowa City. After this week we are just waiting for Dr. Rahdi in Iowa City to tell us when to be there...

Other then that, there really isn't any news. Nikolas has been doing great. Acting like a 4 year old:) It's great to be able to be home with him when he's feeling good! I am soooo thankful for the people that I work with!

Thank you for the continued thoughts and prayers. We are getting kind of nervous for the trip to Iowa City! So, big prayers now please!! :)

Love to all,

Posted Aug 16, 2008 11:34am

Hi all,

Sorry I'm slow with the updates! Well, Nik went to his appointment with the surgeon this past Monday. He took out Nik's temporary line that was in his jugular. That was an experience. I think he was more scared then anything. When the Dr was done, Nikolas said it didn't hurt at all. So he is line free!!! woo-hoo! Well, for a couple of weeks anyway. Hoping to get some swimming done in that time, since he couldn't go swimming all summer. When his counts drop and are on the rise again, they will re-insert another Hickman. Hopefully this one won't keep giving him problems with infection, but we will wait and see! We should be in Iowa City by the end of this month...
Had his blood counts checked yesterday and they were good. They had to poke his arm to draw blood:( We warned the nurse that he would scream, I just don't think she understood how loud he could really scream until they started. I think Peds nurses should wear ear plugs! But he made it through.

He has been sick a few times this past week from chemo, but bouncing back and feeling good now! The surgeon really didn't tell us any more news about the pathology of the tumor he removed. Just that it still had islands of active disease in it. He seemed pretty positive about the whole thing, so that's good. I am very impressed with Dr. Ukabiala. He is a wonderful surgeon and tells you how it is. I like that! He is very good with Nikolas. Actually everyone at Blank and IMMC has been fantastic with Nikolas...

We made it to the fair this past Monday also, after his appointment. Towards the end he started pepping up. But he just wasn't too into it. But he got to ride around in stroller all day! So that helped!

We are getting some professional pictures taken this afternoon of Nikolas. Should be fun. Amy Doerring(hope she doesn't mind that I mention her name!!!) is wonderful! We have had Nik's pictures taken with her a few times before and her pictures are fabulous! So I'm pretty excited about that. It's the small things that excite me now!!! lol.

We hope everyone is doing well. Thank you for the continued support! We couldn't make it through this without it!!!

Love to all,

Posted Aug 11, 2008 9:02am

Hello to everyone,

We got to go home last night! yeah! This round didn't go as good as I had hoped, but he made it through. He got sick a couple of times and is pretty tired. We were walking from the car to the house last night and he says "Mommy, could you walk slower, my legs are really tired". It breaks my heart that our 4 year old gets tired that quick.
He had to basically stay in his room all weekend and couldn't go to the playroom because it was continuous chemo for 48 hours. But luckily they now have portable Wii's. So that helped. He has his post-op checkup with Dr. Ukabiala this morning. But the incision looks great so don't think there will anything to tell about that. Except we should find out the whole pathology report about the tumor he removed. What we do know is there was still islands of active disease in the tumor. Not really sure what that means, but will find out today.
We also have to start the Neupogen shots again today to keep his white blood count up. Not looking forward to that. Those that have done it know how we feel. It's hard enough when someone else gives your child a shot and they scream, but it's 10X's worse when it's you that's making your child scream.
We hope to try to make it to the fair today. But I'm not pushing it. Depends on how the morning goes. If not, maybe sometime this week...
The lemonade stand was a great success. So far I believe the total is around $5000!!!! Thank you to those that stopped by.
Again, thank you for the continued thoughts and prayers. Our next stop is Iowa City for the stem cell transplants. He will need some extra prayers there! Will keep you all updated. Thank you again.

Love to all,

Posted Aug 8, 2008 5:45pm

Hi everyone,
Had Nikolas' blood count check up this a.m. We werent' expecting for him to be admitted for chemo until next week sometime. So we were surprised when he was admitted for round #5 today. He should only be here through Monday morning. If everything goes well. Which I'm sure it will:)

I (mom) am still planning on helping out with the lemonade stand tomorrow. But no Nikolas:( Was hoping he would be able to help out. I think he would have a lot of fun with it! Next time...Still going to raise lots of money though!!!

Thank you for your continued support, messages, thoughts and prayers...

Love to all,

Posted Aug 5, 2008 8:19pm

Ashlyn a wonderful little girl said goodbye to her family on Saturday August 2nd in the afternoon. Please keep her family in your thoughts and prayers also.
Thank you and God Bless

Posted Aug 3, 2008 11:30am

Hey all,
We got to go home last night! woo-hoo! He is doing great! Only on Tylenol now for pain, which seems to be ok. He doesn't complain about any pain, except for gas...lol. His tummy is trying to get back to normal. He's back to playing like a 4 year old. He amazes me. Had major surgery on Tuesday and already back to playing and running around. If that was me, I wouldn't even be out of the hospital bed yet!!! lol. He went home with his temporary line also, which is in his jugular. That makes me a little nervous, so being extra cautious...
What's next...He has count checks on Friday like normal. We have to call tomorrow and schedule a post op appointment in about 9 days. They think he will be ready for round #5 of chemo then too. So after that round, he will recover, then off to Iowa City for the stem cell transplants. So we are thankful for the break right now! Hoping he won't get sick this round either. The 2 drugs being used this round are the same as round #2 and that's the only round he didn't get sick.
Another note, if you are in Des Moines next Saturday, August 9th, please visit one of Alex's Lemondade Stands from noon-3 at the Urbandale, Altoona and West Des Moines Hy-Vees. Those of you not familiar with the program, a little girl, Alex, started the program to help raise money to find a cure for childhood cancer. Alex lost her battle of cancer, but her lemonade stands continue to make money! It's a great program! Please stop by...
Thank you for your continued support and messages and all the prayers. We have an awesome team behind us and some great miracles have been happening!

Love to all,

Posted Jul 31, 2008 1:21pm

Hello to everyone,
Just an update on Nikolas' progress. Yesterday they removed both IVs in his arms. Had kind of a rough night last night. Pretty restless. His epideral was leaking and he spiked a fever of about 102, so they removed his epideral, which was being used to help control the pain. That was about midnight. So now he's getting morphine through his new line. Which has helped a ton. It is on an as needed basis. I keep asking if he's hurting or needs pain medicine and he says NO! He is stubborn like his mommy! lol.He is becoming more independent today! He's back to saying "I can do it myself!!". So that's a great sign! lol. He's talking a lot more today too. lol. Hoping to get the nose tube out and the catheter out today! He's not in any pain but that nose tube sure bothers him! He would be ecstatic if that would come out!!! Still waiting on the pathology report from the tumor to see if it was still cancerous or not. Said it could take up to a week. What we do know for sure is that the scans showed that he still had tumors in his skull and knees for sure. Praying that the chemo and radiation take care of those. The plan from here is for round #5 of chemo in the next couple of weeks. He will recover from that, then off to Iowa City for the stem cell transplants. Looking on being there by the end of August, beginning of September. After two of those will be radiation, then 6 months of oral chemotherapy(or for however long he can tolerate it). So that's the plan...We are extremely thankful for all the good news that has come our way lately!!
On another note. The Run, Rock and Stroll event that was postponed earlier this summer has been postponed again. You can find out info at www.runrockstroll.com. If you can't make it, try to support in any way you can. I know money is tight for a lot of us, but anything you can do to support childrens cancer would be great! It could be for a child you know, a child you have never met, or it could be your own child...I know we thought it would never happen to us.....

Thank you all your support! Will keep everyone posted...
Love to all,

Posted Jul 29, 2008 5:12pm

Hi everyone,
He is out of surgery and in PICU which is Pediatric Intensive Care Unit for those who don't know. Surgery went great! Went in to surgery about 9:30 this morning and got done about 2:30. Dr. Ukabiala(Buchi) said it was tricky but got ALL of the mass out. woo-hoo!!! Had to detach some blood vessels from the mass. Also took out a couple of lymph nodes that looked suspicious. But preliminary results show that they weren't cancerous. The tumor was fairly large, about the size of the surgeons fist. The tumor was pressing down on the left kidney, but there was no damage. Yeah! He also removed his Hickman and put in a temporary central line. He also had a breathing tube, a nose tube to suck out his stomach contents, an IV in each wrist, urinary catheter and epideral in his back. The breathing tube has been removed but everything else remains. They said he did great and that he looks awesome for what he's been through. Dr. Ukabiala seemed extremely optimistic. So, today has been a great success!!!! He is a strong little guy!!! He will be in PICU for a few days. So can only have limited visitors for the time. Will keep everyone posted on his progress. Thank you to all the staff at Blank & IMMC. We can't thank you enough!!!
Also thank you to everyone for keeping us in your thoughts and prayers. It's a Huge relief that this part is over now...

Love to all,

Posted Jul 21, 2008 5:22pm

Hi everyone,
It's been awhile since I have updated, but their wasn't much to update until today. I had a bone scan and CT scan this past Friday. Things went well. I held very still for my pictures. My Mommy, Daddy and me met with the surgeon today. The scans show that things have shrunk!! woo-hoo! My surgery is scheduled for next Tuesday the 29th. They said it would be an all day surgery, but think they can remove what's left of the mass. Said they will open up my last incision and will be about twice as big. They will put me under with gas then insert an IV and remove my Hickman line while in surgery. I think the plan is to replace it with a PICC line. At least that's what we understood:) So much information in Mom and Dad's head, they can't keep it all straight! lol...
On another note,
I finally got to go to the Omaha Zoo this past Thursday! I had a blast with my friend Jaxx! My favorite animals to see were the monkeys and the elephants. Mommy's favorite was the aquarium! I also get to go to a birthday party at Chuckecheese with Daddy tomorrow night! I love playing at Chuckecheese!!! That's one of my favorite places.
Thank you to everyone for keeping us in your thoughts and prayers and sending messages on my carepage...and thank you to the doctors, nurses, surgeon and staff at Blank! Everyone rocks!!!

Hugs and Kisses
Nikolas xoxo

Posted Jul 10, 2008 3:33pm

Hi everyone,

I just got done with my MIBG scan. I did so good that I fell asleep!! Now I'm back in my room and I have to have another blood transfusion and more platelets. When that is all done I get to go home!!! woo-hoo! The bacteria in my lines is different then last time, so I get to go home on IV antibiotics and 24 hours on the ethanol lock in my lines. The ethanol is to try to kill any of the bacteria in my lines...So I'm excited to go home!!!
Our next appointment is for next Friday for a CT scan. Hope that I stay out of the hospital until then!! I want to go do fun things with Daddy and Mommy. We will then meet with the surgeon on Monday to schedule surgery to try to the remove the rest of the mass that's in my tummy...
Will write more later...

hugs and kisses xoxo
Nikolas

Posted Jul 8, 2008 11:31am

Hello everyone,
Just a quick update...this is tentative, but probably the plan. Nikolas's cultures came back positive for bacteria in his lines...They are thinking it's going to come back the same thing that he had the last time we were here for this. So far its just coming back saying Gram Positive Rods. So if it is the same, they will be pulling his Hickman line out and replacing it with a PICC line. He was supposed to have an MIBG scan today but it will probably be tomorrow now. Something about the dye didn't meet regulations, so waiting for a new shipment. That is all we really know for right now. Not sure how long he will be here until they know more specific what kind of bacteria it is...
Nikolas is in great spirits and has a blast in the playroom. He is up there now playing the Wii with Daddy:)
Thank you for your continued thoughts and prayers...

Love to all,

Posted Jul 7, 2008 1:01pm

Hi everyone,
Just letting you know that I'm back in the hospital...Blah!!! I started running a fever yesterday and got sick. I got here last night about 11 p.m. My hemoglobin was 6.5 and my platelets were 3. So I had to get blood and platelets. They also took blood from both lines AND I had to get a poke in my arm to check for infection. I had an allergic reaction to the blood and broke out and threw up in the hallway...:) I didn't make it to the bathroom soon enough.
But on a better note, I had a great week last week. I went to the Blank Park Zoo last Sunday with Mommy. I also went to Adventureland on Tuesday with Mommy, my friend Jaxx and his Mommy, Amy. Had a blast!!! I went on the log ride and rode in the front and got soaked. I covered my eyes all the way down the big hill but was laughing when I got to the bottom...I went to the park on Wed with my friend Jaxx too. Then I went to the parade on Friday morning with Mommy, Grandma and Pa. Then I was at Grandma's house all day and we grilled out and then we went to the fireworks that night. So I had a busy week...

Mommy went back to work this past weekend on Sat and Sun. She said it was nice to be back, if only for a short time. And thanks everyone again for the PTO time they have donated to her! It has made this time a little less stressful to know that she doesn't have to worry about that too!!! Thank you!!
Will keep everyone up to date on how I'm doing here. Thank you for all the thoughts and prayers.

Hugs and Kisses...
Nikolas

Posted Jun 27, 2008 11:49am

Hello Everyone,
I got to go home Wednesday night about 7 after my only 3 days in the hospital stay :-)). This round was like my first round of chemo, made me sick a little, but I have so much energy everyone is having a hard time keeping up with me. Going home, still have my IV pole that goes with me for my anti-biotics and still getting my Neupogen pokes to help my white blood count go back up quicker. Going to Blank Park Zoo in Des Moines on Sunday. Also I still have the donated tickets to Omaha Zoo, thank you for donating the tickets. I am going to have fun there also later this summer. I want to also say a special thank you to IHCC Computer Forensic Club for having a 'Race for Nikolas' Wednesdy night at Slideways. Thank You to everyone that attended, including Barry who won the Club race and gave the 1st place plaque that he won back for me to enjoy, Thank you. Better go and play, like I said I have lots of energy.
Thank you everyone who sends me e-mails to the hospital, cards, leaving me all the nice things on the message board and coming and playing with me at home or in the playroom. I have lots of friends and family, thank you everyone for your prayers and support.

Hugs & Kisses to Everyone

A personal note from me:
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Posted Jun 25, 2008 8:16am

Hello all,

Sorry for the delay in the update. We are at the hospital for Nik's chemo... Last day! woo-hoo. We originally thought it was 5 days but when we got here Monday it was only 3. He has been doing great with this round. Not sick or anything...And it's the same combination as round #1 when he got REALLY sick. So we hope to go home tonight. If not tonight, it will be tomorrow.
They plan surgery to remove what's remaining of the mass around the week of July 7th. And said we would be in Iowa City by August for the stem cell transplants. Will keep you all posted.
Thank you for the continued thoughts and prayers.
Love to all,

Posted Jun 19, 2008 9:53pm

Hi everyone,

So far, so good!! woo-hoo! His lines are still coming back clear so we get to go home tomorrow for the weekend and come back early on Monday for chemo...Nikolas is pretty excited to go home! Except we don't have a Wii at home. Going to have to go visit Aunt Tammy & Uncle Chad to play theirs:)
We also got news that they did more tests in Iowa City on his bone marrow and it IS clear! So the stem cell harvest they did is good too!!! We are very excited about that! So the prayers have been working:)
Will keep everyone posted on the progress...

Love to all,

Posted Jun 17, 2008 5:40pm

Hi everyone,
Just letting you know that Nikolas has until tomorrow for his Hickman line to be clear or they are going to have to pull it and put in a picc line. So hoping that results come back negative tomorrow and he doesn't have to go through that!!
Nikolas has been asking for a forklift with a remote. So when daddy got here today, he had a surprise for Nikolas! He hasn't played with anything else since he got that! And either has daddy. lol... Nikolas is pretty excited about it.
Tonight it's dad's turn again to play the Wii because we have found that mom's not very good. Nikolas told me so! lol.
Will update tomorrow...
Thank you for the continued thoughts and prayers.
Love to all,

Posted Jun 16, 2008 6:07pm

Hi everyone,

Latest update...
They started a lock in his white line that is supposed to clean out the bacteria. Have to do that for 3 days then he will try to send us home for a couple of days then either start chemo on Friday or wait til Monday to give us a little longer break...Hopefully not til Monday because Mommy and Nikolas have tickets to the Indy race on Sat and Sun!!! woo-hoo!

Had to give him blood today too. Counts were low.

Nikolas is in great spirits! He asks every 5 minutes if the playroom is open! lol. It's only open at certain times a day. They have a Wii in there and that is Nikolas's new infatuation!!! Daddy has been at school so it's up to Mommy to keep up with the video games...

Thank you for the continued thoughts and prayers...

Love to all,

Posted Jun 14, 2008 2:34pm

another update...

Doc said the lines are still growing bacteria, so switching to a stronger antibiotic. If that doesn't work, pointing toward having to change his Hickman line:( So either way, chemo is probably going to be pushed back, not sure when it will start now...will keep everyone posted...

still, please go to this website and sign the petition for childhood cancer... www.thepetitionsite.com/1/CureChildhoodCancer ...
It's for a great cause.

Thank you for all your support...

Love to all,