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Hello everyone,

The tentative plan is to start chemo on Monday due to the infection. It is only in his lines and not in his blood, so that's a good thing. The chemo is 5 days so we will be here until at least next Saturday at the earliest...

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...

Thank you for all your support...

Love to all

We are back at Blank today. Nikolas started running a fever and had chills yesterday and we came to the doctor. They drew blood for cultures and gave him an antibiotic and sent us home. Dr. Al-Zein called this morning and said his culture showed positive growth so here we are! Nik's not too excited to be here. He was with Papa in the backhoe when I got the phone call. He would have much rather stayed with him!!! We were supposed to start chemo on Friday but said it might be post-poned til next week now until they clear up the infection...

The benefit went well and we were able to attend. Thank you to all who helped out, donated and attended! A special thanks to Aunt Tammy and Elaina!!! They have worked extra hard!

We were told the roadmap for the next few months. After this round of chemo they will re-do the scans to see how big the mass still is. When he recovers fully from chemo they will do surgery to try to remove what is left of the mass. After he recovers from surgery it will be round #5 and last round!!! of chemo. When he recovers from that, it will be off to Iowa City for the stem cell transplants...So we will be in the hospital a lot in the following months...Which we expected. Just hate for Nikolas to miss out on his summer...

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

Love to all

Hello all,

We have been traveling to Iowa City the past 3 days! Niks bone marrow came back. He still has some disease in his marrow...They went ahead and did the stem cell collection. Trying to get all good stem cells and no cancer. They will send in a sample to have tested to see if there is any cancer in the collection. They have been corresponding with other hospitals, one in LA and said they have had great luck in doing this. If the test comes back that there is still cancer in the collection then we will be trying it again after round #4. So, pray hard that he doesn't have to go through this again!! It was hard for him to lay still for 5 hours each day. Plus he had to have another blood transfusion today. After today, he said he was happy to go home...So were mom and dad. I think we're more exhausted then he is!! lol. And dad still had a test to take for school after we got home tonight!

So, I think we're home until round #4 of chemo, which should start next Friday...except for count checks. His white count was great today, so no more Neupogen shots until after the next round. He was happy about that! And I think dad was even happier! lol.

So, hope to see everyone who can make it on Saturday! Thank you for the continued support! You all have been wonderful!...

Love to all

Hello,

We got to go home yesterday afternoon. Nik has still been sick about once or twice a day, but the cultures all came back negative and think the fever was due to low blood counts...and vomiting due to chemo...

We all headed to Iowa City this morning for another bone marrow biopsy! Ugh... Did back of both hips again. Needless to say, Nikolas is a little sore from that. The results won't be back until around 10 tomorrow. We are hopeful!!! Dr. Rahdi in Iowa City said that last time one side was completely clear and the other side had very few spots left in the marrow. Going back to Iowa City at 8a.m tomorrow to prepare for the stem cell harvest...As long as the test comes back clear, we will be there most of the day...I dont think overnite, but never know...I will keep you all updated as much as I can. It's hard when we're on the road so much!!

We all still plan to attend the benefit this Saturday in Newton...I know a lot of you have asked if we think we will be able to make it...So hope to see you there...

Thank you all again for the continued thoughts and prayers...
Love to all

Hello all,

We are back at Blank...He started running a fever yesterday when he was with daddy, so daddy called and the dr. said to come in and Nikolas was admitted at about 11p.m. This round has kind of kicked his butt...

His hemoglobin was 5.7. Under 8 is when they usually have a transfusion. So Nikolas had a blood transfusion this morning about 5 a.m. And his white blood count was 0.10. 4-12 is normal. So they were right about his counts dropping this weekend. He definately dropped!! The dr also said he was glad we were here because they wouldn't do his stem cell harvest this week if he had a fever or any kind of infection...So he is also on an IV antibiotic and they drew blood out of both lines to see if anything grows for a culture.

Not sure how long we will be here this time...Think we will be shipped off to Iowa City sometime this week also.

Will keep everyone updated as much as we can...
Thank you to all...

Love to all

Hello everyone,

We got to go home yesterday!!! woo-hoo! Nikolas seems to be feeling good...We go back tomorrow for counts and then Monday for counts. Depending on how the counts look, we might be back Tuesday and Wednesday for counts to hopefully get the stem cell harvest done by the end of next week or the beginning of the following week. We will be spending a lot of our time between Des Moines and Iowa City next week....

Will keep everyone posted on where we are going from here...We still plan on making it to the benefit in Newton on June 7th... Hoping everything goes smooth between now and then...

Thank you for the continued thoughts, prayers, messages and visits... It definitely helps knowing that we have such a great support system!!!

Love to all

hi again everyone,
Hope you all had a safe and Happy Memorial Day weekend!

Last day of chemo this round...woo-hoo. It's been a little rough this round. Chemo gets over at around 7 at night and he usually gets sick then. He hasn't really kept a whole lot down actually, but he tries. Hopefully we get to go home tomorrow morning. He has to get fluids through his Hickman for so long after chemo. Nights have been rough sleeping too...Last night he moaned until about 4 this a.m. Finally got him to tell me that his belly hurt. And with all the fluids he has to pee about every 2 hours it seems like.

Will keep you all posted on his progress...
Thank you for the continued thoughts and prayers...

Love to all

Hello again everyone,

We are back at Blank today for round #3 of chemo...Nik has been doing so well and his counts were good for him to start today. It will be 5 days this time. Each time is different so we usually forget to ask how long until we actually get here:) We are in room 308 this time. It's a double room but they said we won't have a roommate. And it has a big, flat screen TV, so Nikolas is loving watching Sponge Bob on that! lol.

Other than that, there really isn't any news...He just continues to amaze us.

Hope everyone has a safe and Happy Memorial Day weekend...

Hello everyone,

We went to Blank today to check blood counts. They were good so they sent us to Iowa City to start the stem cell harvest. Except when we got to Iowa City the test came back that there was still some cancer left in his bone marrow:( But, the good news is, is the treatment is working!! And we know that for sure now...The bad news is, they will have to repeat a bone marrow biopsy after the next round of chemo...They are hoping that after the next round the marrow will be clear. It needs to be clear before they can harvest the stem cells.
Next round of chemo should be next Wednesday if we are on schedule. By the sound of it, he will be...
Nikolas continues to do great at home. Playing like a 4 year old!! Which is great. We are thankful for the good days. And the bad ones too! Everyday actually.
Thank you for all the continued thoughts and prayers...

Hello everyone,
It has been awhile since we updated. Nikolas has been doing so well we were enjoying him at home. On Friday Nikolas had a blood transfusion at Blank, and that went really well. We went to Iowa City on Friday for a Bone Marrow test. They are doing this test to find out if there is any Neuroblastoma in his blood marrow. Nikolas was put under sedation so he basically could sleep through this one and Dr Rahdi from Iowa City did the the test. Afterwards Nikolas woke up and everything was great. He had no complaints of pain or anything. He ate and drank well.Dr Rahdi did a prelimenary microscope test of the Bone Marrow and had WONDERFUL results for us. Dr Rahdi said he seen NO Neuroblastoma cells in his Blood Marrow. (That shows that prayers are answered) The comlpete test will be done by Monday to let us know if we will be able to collect stem cells in Iowa City.
We left there and went home and he was back to helping PaPa planting on the tractor in the fields. Our next trip is to Blank Hospital on Monday morning just for blood counts at the clinic.
Once again thank you everyone for all your support by cards, gifts, prayers and everything you have done for Nikolas. Please kep praying for Nikolas because our prayers are being answered. Thank you everyone.

Thank You

Hello everyone,
We got to go home last night...woo-hoo. This round was shorter, but the chemo was continuous for 2 days instead of just a couple of hours a day...He started getting sick Thursday night and he actually got sick right when we left Blank last night...Other than that, round two went more smoothly then the first one. But we're not too far into it either. We will see how he feels being home...

We were able to make it to the benefit last night!! Thank you so much to everyone who came out to show their support and to those who put it together... Nikolas had fun with all the kids!! And playing the drums that was set up with the band!! So watch out!! Our next big toy will be a drum set! We hope to make it to the next benefit in June...

I think the plan is still for Uncle Larry to take Nikolas flying on Monday. Larry has his pilots license(scarey):)... I think Nikolas will love that. He's already been in a helicopter so I know it doesn't scare him...But we will see about an airplane...

I will keep everyone updated on his progress at home. We hope to have some good days. Dr mentioned his counts will really drop now, so will have to be careful as far as visitors after the next few days. On with the fight!!

Love to all

Hello all,

Back at Blank for round two...His counts were good to go for chemo. We are hopefully only here until Saturday. woo-hoo. Keep our fingers crossed.

He had continued to do great at home. He rode on the tractor with Papa and planted corn. He was in heaven doing that...
He didn't even seem to get depressed when we got to the hospital this time. So it was easier to come...

The 'Race for Nikolas' event at Slideways Karting Center on Sunday went great! Nikolas had a lot of fun! Thank you to everyone that came out to show their support...

Our appointment in Iowa City went ok. Was kind of gloomy and they were talking about numbers of survival...So it was hard to focus on the positive. It's the best chance for him. But they will be trying to harvest his stem cells about 2 weeks after this round. Depends on how he has been reacting to chemo. If its working. And now the two stem cell transplants will be after round 5 of chemo. Radiation will be moved to after both stem cell transplants. It originally was before them. We will be repeating the bone marrow biopsy and scans after this round also....

We also started 'Beads for Bravery'. He gets different beads for everything he has done. From a hospital admission to a blood transfusion to a scan. It's really cool!! So every time he gets a different bead...Needless to say, we already have a lot!!!

Thank you for everyones continued thoughts and prayers!!!! I love reading the messages of support!

All our love

Hey all,
Nikolas's check on Friday went great. His counts are great! He really turned around in the past week!! Thanks to the wonderful staff at Blank and the awesome doctors we have!!
He has been with daddy the past 2 days. Daddy says he's been doing great. We are going to the "Race for Nikolas" at Slideways Karting Center today at 1. Nikolas will enjoy riding in the go-karts. Not that he doesn't get to all the time anyway there.
Off to Iowa City tomorrow for a meeting with Drs. It's about the stem cell transplant. Will be a few hours long and they record it so we can go back and listen to the information. Just what we need right now is MORE information!!! Our brains are overloaded as it is!
We still go back on Wednesday for the next round of chemo. Our appointment is at 8:30. We will be in for at least 5 days. Hopefully no longer, depending on how he does.
Thank you for everyones support!!!

Love to all

Hello,
We are out of the hospital!!! woo-hoo! Nikolas is doing great. We stopped and shaved his hair last night on the way home. That was a little heart-breaking. His counts are back up and we are done with the Neupogen shots until the end of the next chemo round! Excited about that too. Funny how the small things excite us now!!
We are going to my friend Amy's house this morning so he can play with Jaxx! Need some kid interaction!!! Mom and Dad are only fun for so long...Nikolas is with Mom until Thursday then he will most likely go to Dad's house...
We go back Friday for a check-up at Blank and then go meet with the Dr in Iowa City this coming Monday. Nik's chemo has been post-poned until next Wednesday. So we won't be able to make the benefit that is on May 9th:( We were hoping that we would be able to...We are now shooting to make the one in June. Will keep everyone updated on the progress.

Love to all

Update, We actually got some good news today!!!woohoo!
His inflammation in his bowel isn't as serious as they were thinking it was. He is back on a regular diet so he ate the best he has for weeks today and has taken a long, much needed nap. He has been rather grouchy:)
He will be getting more platelets tomorrow. His counts are rising beautifully and we will PROBABLY be going home on Monday!!! No promises. But back on Friday to start 2nd round of chemo. Dr wants to really try to give us another break.
Also, he told us that the gene that they thought was originally twisted, that would almost inevitably make the cancer come back, isn't. The biopsy came back showing that it wasn't, so that is more positive news. He was very happy about that and of course, we are too!!!!
Thank you for all the support. The messages have been great!

Love to all

Nikolas got out of Blank Hospital as soon as they got done with the last bag of chemo. The staff went out of their way to give Nikolas his best chance of making his own benefit. We can not thank them enough for all they have done for Nikolas. Nikolas made it to Knoxville Dyer Hudson Hall at the Knoxville racetrack by 7 o'clock. Lots of friends and family were there the see him. He had a great time playing with his nerf guns with his cousins and friends and he got to play on the drums of the Phoenix Band. Rick VanDonsler auctioneered for his benefit and did a wonderful job, thank you Rick. Nikolas would love to thank each and every person that helped with the benefit ,came to the benefit, and that gave donations one way or another. There is just so many we can not say thank you enough. There are also many that could not make it on Friday that will be seeing Nikolas on his benefit at the Elks in Newton coming up June 7th. Nikolas, his Mom and I appreciate EVERTHING everyone has done for Nikolas. He is on many many prayer chains also in everyone prayers Thank You, Thank You, Thank You.

Thank You all for your support. Nikolas had a great time and would like to congratulate Matt Deaton for his win. Nikolas would love to say a special Thank you to Matt for giving him the winning trophy.

Hello everyone,
We are once again back at Blank:( He started running a fever yesterday morning so had to bring him in last night and we were admitted. Most of his counts have really dropped so they gave a bag of platelets and had a blood transfusion last night. Has to have more platelets today but are having trouble finding a match. They also started him on an antibiotic because of the fever. They have to treat it as if he has an infection and his white blood count was so low, he wouldn't be able to fight it.
We are thankful for the 2 days at home. The weather was great. He got to go outside. Rode on the skid-loader and 4 wheeler with mommy and went on the backhoe with Papa Machin. He didn't last long at any of them, but at least we were home.
We will continue to keep everyone posted...Thank you for everyones support and love.....

Love to all

Hello everyone,
We got to finally go home last night!!! woo-hoo! Nik went home with Robin to Kellogg. Took 3 vehicles to get all of his stuff home!!! We, Robin and Nikolas, are going to be living with grandpa for awhile now....He didn't understand why we couldn't go back to Pella:(
Jimmy is going back to school. Not sure if he was looking forward to it or not...
I will keep everyone informed on how Nikolas is doing. We go back this Friday for a check.

Love to all

Hey everyone, Here for at least 2 more days. They started him on IV antibiotics today because his arm got an abcess from a band-aid that he was refusing to take off!!! No more band-aids from now on unless absolutely necessary!!! lol.
His blood counts are starting to drop. We have to come in every Friday and Monday now for checks, when we actually do get to go home!! It was just Friday, but Dr. Al-Zein thinks he needs to be seen twice a week now since he's a puker... He expects us to be back in the hospital next week with fever, so hoping to send us home for a few days...He will also start losing his hair in about a week, so preparing everyone for that. Biggest shock will be to Mom and Dad probably. They say it usually doesn't bother kids too much...
Jimmy gave his first shot today...ugh! He didn't like it so much, especially to his own son...Let him go first since I have experience. We will now take turns being the bad guy:( The shots are to boost his white blood count(WBC). His WBC has to be so high before we start the next round of chemo. Will get the shots throughout chemo treatment for about 10-14 days in between, every night...yuck. Mom and Dad not looking forward to that, but I'm sure he doesn't like it even more....
There is a new room here at Blank. It is called the Poke Room. It's actually the treatment room but that's where Nik gets all his pokes...He really doesn't like that room!!!!

We have discovered through this that people are amazing and reach out in difficult times...
People we don't even know have been here to visit and reach out!! Thank you again for everything everyone has done. I'm sure we will miss sending thank yous to people because it has been such a whirlwind!! Just know that everything is deeply appreciated. Please continue praying. We are keeping positive and appreciate life much more now and forgot all the petty things we would complain about before...Life is precious...

Love to all

Obstacles are those frightful things we see when we take our eyes off the goal-Henry Ford...

Well, so much for our hope of going home today...They are saying maybe not til Monday now.... ugh! Will keep everyone posted.

Love to all

April 15, 2008

Yeah!!! Done with the first round of chemo, and he's still sick... Been throwing up a lot still but it's calmed down from days 3 & 4. There is talk of us going home tomorrow...woo-hoo. 2 week stay in a hospital for a child is not fun, and it's not fun for mom & dad either....I will keep everyone posted if we get to go home for sure or not. Either way we will be back on Friday to check his blood levels. Hopefully not staying!!!
Thank you again to everyone one that I work with at Pella Regional!!! The amount of support has been just amazing there. Heck, it's been amazing everywhere!!! I can't believe the amount of people that have reached out to us...Thank you again for everyones support. There are 2 benefits scheduled for Nikolas. One is May 9th at Dyer-Hudson in Knoxville and one is June 7th at the Elks in Newton....Just to let everyone know, there has been a lot of questions regarding that....Will keep you posted...

Hello everyone,
Last night was not so great. He has been sick about 10 times now since last night. Now he is just sitting on the bed hanging his head in the pink bucket....Poor thing is miserable. And it took it's toll on mom and dad. Though I'm not worried about us. We will adjust.
Onto day #3 of chemo. It will probably start in the afternoon today. Todays mixture of meds are the same as yesterdays, so I'm thinking it's not going to be better today:(
Will keep everyone posted...Thank you for your support.

Well, onto day #2 of chemo. Yesterday went ok, except he got sick twice. They really pushed fluids through his Hickman, so we were up A LOT peeing!!! lol. Just had a visit from some of the Iowa Hawkeyes. He got an autographed page. It's nice that they do those kind of things for kids...
The MIBG didn't show that the cancer had spread to any other organs, so it didn't show anything that we already don't know....So that's about the only good news we have received so far...
He is doing good today. He's been playing in his bed, and a little chatterbox...He has been very independent, not wanting us to help him up. He's being a strong boy!
Thank you to everyone again. I can not say how moved we are with all the prayer requests. It's just amazing the amount of support...
I will keep everyone updated how the rest of the chemo goes this week. Last one this round will be Tuesday. Depending on how he does we might get to go home by weeks end....yeah!!! That would be nice...

Nikolas has been up and playing today and had his last scan today. The MIBG. It's to see if the cancer has spread to other organs in his body. Still starting chemo on Friday. We have a teaching session tomorrow for what to expect and how long, when, etc it will be. Oncologist spoke with us breifly today and tentatively the rounds will be 5 days every 21 days for 5 rounds to start out with. Then oral meds for 6 months after that. So a year of intense chemo. So he said not to expect to leave before next weekend.
Thank you everyone for you thoughts, prayers, generosity. We need a miracle so please keep praying!!!

We made it through surgery. Just did a wedge biopsy and put the Hickman in his chest. Blood vessels were running through the mass so they couldn't take it out at this time. They will let him go throuh a few rounds of chemo first and then reassess the mass.
Chemo will start on Friday. So we will be here through the weekend at least...
No other details at this time. He's being a trooper....

Surgery is scheduled for 10:50 tomorrow morning but they say that it will probably be earlier depending on how the surgery goes scheduled before him...They will be trying to take as much out as they can from the mass and depending on how extensive will either come back to the room or go to PICU.
They are also doing an MIGB test and the dye they use will be put in around 4 tomorrow afternoon. After that, he's not supposed to be around anyone under the age of 18 for around 24 hours because of the dye...
Chemo will start 1-2 days after surgery. We will get a schedule of when his chemo will be after it starts...
Stem cell transplant will be in Iowa City still and they told us to plan on staying there at the hospital for a month...
Like I said, we will find out more of a roadmap of when everything will be after chemo starts....
Thank you again for all the love and support we have received from everyone...It has been just awesome!!!
Keep praying. We have a long haul in front of us....

We got back the test results from the scan and biopsy from yesterday. It is also in his bone marrow. The plan is still surgery on Tuesday. Depending on how extensive that is they will either wait a few days for Nik to recover from surgery or will start chemo on Wednesday. Whatever day we start will be the day that we come back for checkups every week. Chemo will be every 3 weeks for about 3 days at a time. Depending on how well he is doing will depend on the hospital stay. The first stem cell transplant will be after a few rounds of chemo. The way it was explained is they will take some stem cells out, that will go through a process for about 30 days to clean them up and will be put back in him. Not sure if we stay in the hospital for that time period or what. We have so much information right now that we forget to ask questions...
Once again they have said that this is going to be tough to beat, but not impossible...depends on how he responds to treatment. Chemo will be aggressive for 6 months. They don't want to give this a chance to breath or it will attack...
Once again, thank you to everyone who has sent messages, sent gifts and prayed for Nikolas...He is a tough boy, the love of our lives and we pray that God will be behind us all the way!!!

Hey everyone,
We don't get to go home because he has been running fevers and he's not eating at all and not drinking well. The oncologist will be in this afternoon to discuss the tests from yesterday with us. Will keep everyone posted....

Thank you all for your messages, phone calls and visits. We might take Nikolas home for the weekend to get a break from the hospital before surgery on Tuesday. That is an option and we are thinking we will. Will let everyone know for sure.

Our healthcare team is awesome here. Have been very upfront and honest with the situation and the outcome. There is a low percentage that this is curable as advanced as it is. They will be doing aggressive treatment for the first 6 months. They will evaluate how he is responding after every few chemo treatments. The bone marrow transplant will be after a few chemo treatments. He will also be having a stem cell transplant. We will have to go to Iowa City for that. Chemo will be every 3 weeks and will probably be staying in the hospital each time.

Thank you to everyone I work with!!! I have a great support system there!!! Wow I am blown away with that. I will be off work probably through all of this. At least for 6 months, depending on how Nikolas is responding to treatment. Jimmy is also off of school until the end of May. After that he will see if he goes back then.

Thank you also to all of our friends and family. We couldn't make it through this without you!!! Keep praying for our sweet Nikolas.......

Not good news. He is Stage IV. He has tumors all throughout in his bones. Even in his skull. We will start chemo next Wed. His surgery is still scheduled for Tuesday. He will most likely have to have a double bone marrow transplant. I know many have wondered whether to visit or not. Please do. We need the support. Thank you to all who have posted comments and said prayers. Thank you for all your support...

Thank you to everyone who has visited and prayed for Nikolas. I will keep everyone updated as much as I can. What we know so far:
Has a mass in his abdomen measuring about 2 1/2 x 3 1/2 inches. 99% sure it is neuroblastoma. An aggressive form of cancer. We are currently waiting on results from the bone scan he had done earlier today to see if it has spread. They are pretty sure it has based on his symptoms. Positive we are at a Stage III, possibly IV depending if it has spread. Those who don't know, IV is the worst stage. At this point they are pointing towards aggressive chemotherapy with possibility of radiation and a bone marrow transplant, depending on the stage. Chemo will be at Blank and if he has to have a bone marrow transplant it will be in Iowa City.
Tomorrow we have scheduled a PET scan at 11 and a bone marrow biopsy in the afternoon. He will be completely sedated for the biopsy. Taking some from each hip:( We will know those results by Friday if not before. Surgery is scheduled for this next Tuesday to remove some, if not all of the mass. Again, they don't know what they are working with for sure until they get in there. Whether it's attached to vital organs...
Thank you to all who brought him birthday gifts today. Will try to update as soon as we know more....

06/17/08