Monday, October 31, 2005 10:19 AM CST

Hello everybody!

Monday, October 24, 2005 8:10 AM

Hello friends!

Thank you all who are still checking on us and everybody who signed the guestbook. We love your entries.

We had great weekend.
On Saturday we have been lazy and spent the whole day in house. The boys have been in garage and did something on the cars. Don’t ask what – first I don’t understand anything about cars and second I’m not too welcomed there.
The only thing I know is – they both got pretty dirty and black hands. And that was my only part in this story and had to get them clean again. But not quick enough, we have very nice Ronnie’s finger prints on the wall in hall. It’s not so dramatic; it became a part of out Halloween decorations. We have done it in the evening and our house looks pretty spooky now. Ronnie has done a lot of decorations on his own (with my little help) and is really proud of them.
He not so sure what he wants to be. He wants some scary costume. He just loves to scare the other who comes to our house. He’s not so interested on Trick or Treat, that secondary for him.
At this moment he wants to be a vampire, but it can change every hour. But for the Trick or Treat he wants to have SpongeBob costume. It’s not far and away the final decision. Just see.
In the evening we have cut some pumpkins and the garden is now full with Jack O’Lanterns. It looks fantastic in the dark.

On Sunday morning (my birthday) I was surprised with a birthday cake and flowers from my boys. They were so lovely. I didn’t have to do anything whole day long. I thought I’m dreaming.
We went out for lunch and see ice-hockey game with my brother’s family. After the game we went to their house for a small barbecue party and I have got my birthday present – we (me and Ronnie) are going to Caribbean! My brother’s wife and my best friend - Jane with their son Jack are going with us.
We both have got it for birthdays. She has had her on September 24; she knew it and didn’t say anything to me!
We wanted to go on vacation as a family in summer, but first Ronnie wasn’t doing well enough for so long trip and that it went all so quick with the moving to California. There was no time for it.
For Temi it is not possible to go with us any time now and the next 6 – 7 months, but he is OK with it.
Ronnie is so excided! We are not sure yet about date and destination, but give us two days and we will know more.

After the party Ronnie decided to stay there. We have tried to persuade him, but he wanted to stay with his cousin. So we went home alone.
It was so strange. Only me and Temi.
Late in the night I was lying in the bed thought about it, that one day we will be here alone and Ronnie does not come back next morning. I believe in his healing, but on the other side the probability is very slim. I was lying there and after long time crying again. The last months have been very happy time for us and I didn’t have any reasons to cry.
Temi was up too. We didn’t talk much, but I know he was thinking about the same…

It was bad night and I was up very early.
But is time to pick Ronnie up now. I miss him so much.

Thank you for visiting and reading my a little bit depressive entry. Don’t be sad, life is good and I’m feeling great this morning.

We are also planning our trip to Disneyland this or next week, we have promised Ronnie to do it after the scans and it has been a while since back here.
We will see which day. We want to go together with daddy, so as soon as he has a day off we are there.

Have a nice day everybody. Take care and please don’t forget all the children beat cancer. Keep them in you prayers. Thank you.

Love you all.

Nina

Tuesday, October 18, 2005 11:30 AM

Hello everybody!

Thank you for checking on Ronnie. He is doing well. Our flight was very long and boring, but we are here and for the next 3 months (hopefully) we won’t need to travel again.
I think this traveling is more stressing for me than for Ronnie. He just loves flying and enjoyed every minute.
He has even chatted with the first pilot!!! We had got to see him in the cabin and just asked, if Ronnie is going to Disneyland and our little boy started to explain him all the things about us, that we are living in Europe, but now we have to fly to California, because his dad got a job there and he was now at home to have his scans done etc. He was talking about his cancer with him like a big guy. And I was so proud of him!

But the best is still his daddy. He has missed him so much. He didn’t move from his side since we are he.
Ronnie got exception today and went with him to work. He just loves to do anything with his dad as always. They should be back for lunch and than Temi goes back and we will spend the afternoon together alone again. We will visit some friends and go to beach.

I wish you all nice day. I promise I will write more soon.
Thank you for visiting.

Nina

Thursday, October 13, 2005 9:20 PM

Hello everybody!

Ronnie is doing great.
On Monday he was not feeling so well after the surgery. It took only 30 minutes, but the anesthesia knocked him out for the whole day. He is in no pain now and enjoys every single minute with his European family.

Today he has spent whole day with Temi’s parents and stays there over night. He had surely a lot of fun, but I don’t know what they have been doing. I have spoken with him on phone few minutes ago, but he didn’t tell me anything.

I have spent my day with lot of paper work and had some arrangements. First I wanted to fly to CA via Prague. I have tough we will have some time to visit my grandmother, but it would be too complicated. There are almost any direct flights from Prague to LA, you have to flight via London, Paris, Amsterdam or NY and we would spend two days traveling.

I have decided we will take our regular airlines, which we are content with and fly via Paris as usual. It’s a monster flight anyway.
Next point is to leave our beloved dog here. We’ve spoken about it and we don’t want and we can’t do that to him. Last time (over one year ago) we did, he was stressed for many weeks.
It will better for him to stay here at my parents.

OK will are leaving on Sunday again at 4 pm and are at pm in LA. So we have some more days here and will enjoy them.
Next we will be back around Christmas for next scans and testing.

Thank you for visiting. Don’t forget to sing the guestbook.

Nina

PS: Does anybody have some experience with long-term Accutane intake?

Wednesday, October 12, 2005 11:57 PM

Hello to everybody!

thank you for checking on us, your continuing support and the nice guestbook notes. That means so much to us.

Ronnie had his port taken out yesterday and was feeling crappy the all day long. He was sleeping a lot and first at evening we were sent home for hospital.
Today he was feeling a lot better and was acting normal again. This weekend or on Monday or Tuesday we would like to fly back to CA. But I’m not sure, I’ve to look if we get tickets.

I will try to write tomorrow more. I’m tired now – it’s late here.

Please don’t forget to pray for all cancer warriors. Thank you.

Love Nina

Monday, October 10, 2005 8:51 PM

Hello everybody!

I’m sorry – we are really too busy now.
We just arrived from airport. We had quick trip to Prague (Czech Republic).
On Friday we have got a message, that my dad’s mother is doing very bad and we should come to visit her probably for the last time.
So on Saturday evening I, Ronnie and my parents flew to Prague. It was very important for me to say her good bye. I and Ronnie have visited her on Sunday and today. Meanwhile she is doing a bit better, that we have a hope she will get well again.

We have stayed at my other grandmother’s and granddad’s. Which was great, the both are very funny people and Ronnie just loves them.

Ronnie is doing well. Hast runny nose, but is doing well. His DEXA scan went OK. The bone density is good and that means he can continue to take Accutane every four weeks.
His port will be taken out tomorrow. And than hopefully we will be able to fly back to California. Daddy miss us much and Ronnie him.

That is all for now. It’s bed time for Ronnie.

Thank you all for visiting. Love you. Take care.

Nina

PS: I hope everybody enjoys the Halloween theme. I know it is a bit soon, but Ronnie loves Halloween!!!!!

Saturday, October 1, 2005 10:59 AM

Hello dear Friends,

I’m sorry I haven’t update sooner, but we were pretty busy here. We are still in Europe now.
On Wednesday we had appointment with out dr’s, which went good and they all are very positive.
We (Temi and me) have agreed with their proposal for Ronnie’s next treatment.
That means continue with Accutane at least for next 6 months. I think this we can manage.
It is known that high doses of Accutane can prevent the few cells left after treatment from causing tumor recurrence. And Ronnie never got radiation treatment. His cancer was stage IV (disseminated), but all histological parameters were favorable (only age at diagnosis was „unfavorable“). After stem cell transplant the dr’s have decided for less aggressive treatment – which was without radiation and we agreed with them.
Ronnie tolerates Accutane pretty well. His skin is dry often, but has no mood swings etc. So we are OK with it. It gives me better feeling, feeling that we are still fighting and doing something against the beast.
Now we have to do another scan on Monday. It’s called DEXA-Scan, which is a scan to measure bone density. Accutane can affect it. It is done on whole body and should take 10 minutes.

We thought we would fly all together back to California on Wednesday or Thursday. Temi flew alone on Thursday pm and I and Ronnie had to rebook our tickets and are still here. I’m not sure when we will be able to fly back. But we don’t complain. Only about weather!!!! HAHA

I Wish you all nice day. Thank you for signing Ronnie’s guestbook.
And pray for all NB Warriors. Thanx.

Nina

Tuesday, September 27, 2005 5:18 PM

Hello Everybody!

Ronnie is still NED!!!

His bone marrow was clear too. We have to plan the next treatmens he has to go throught, but he is doing very well and enjoying his european family.
I will tell you more soon, we are too busy now.

Thank you for checking on Ronnie and for your prayers. It means so much for us.

Have a nice day.

Nina

Monday, September 26, 2005 9:39 PM

Hello everybody!
We had great weekend with our family. Ronnie was so happy to see them again. We were only few days away, but we missed all of them so much.
Temi came last night around midnight and after short sleep we went to our appointment.

We didn’t get NED results, but don’t panic – both scans were clear (urine as well)!!! But there were no results the bone marrow aspiration. The labor needs little bit more time.
Our regular doctor told us he was reading the scans last two days (weekend) and couldn’t see anything. We are very pleased with those results especially with the MIBG. It was a great relief. Now we are waiting for BM and hopefully Ronnie will be declared NED again.

We were discussing next treatment. The dr’s want to continue with Accutane. Ronnie finishes his sixth this weekend and they will continue for next 6 months (or for ever?).We will sleep on it and tomorrow we have another talk with them. But if you have any experience with it please let me know, I would like to hear your opinion.
I think we will agree with them, since Ronnie didn’t get radiation and is tolerating the retinoic acid quite good, we have no other choice.
Next point was his port. They want to take it out. But I have a strange feeling, if they take it out he will relapse! I’m kind of superstitious. As long as it is in I have a feeling we don’t give up and are always ready to fighting the beast. When we take it out, it’s like we don’t matter and think it never comes back. Don’t try to understand my words.
About this we have to talk tomorrow. Now I’m tired and need to go to bed. But anyway thank you for checking on us.
Have a nice day or good night our dear friends. Love you all.

Nina

Friday, September 23, 2005 9:22 PM

Dear Friends!

Thank you for checking on Ronnie. We are done with testing. The MIBG was done under anesthesia as expected. This scan is too long for so small boy, who is almost unable to stay calm for a minute. It took longer than an hour this time and I don't need to say it scares me. I have a feeling they have found something and only to be sure did longer scan. The technician told me it was a normal standard test, but I'm not so sure.
We have no official results now, but were told the CT scan looks great - what a relief.

Ronnie was realy sore yesterday from the bone marrow aspiration and didn't want to to clinic to have his labs etc. done. But my great mother-in-law who came to pick us up spoke to him for 2 minutes and he stright changed his mood and off we were.
He did very well with all examinations and at 12:30 we we on our way to one of Temi's brothers and his family and have spent whole afternoon with them.

Tomorrow we have another family day and we are looking forward to see all again.

Temi should come on Sunday and on Monday or Tuesday we will get the results. Hopefully we will get good news ! I will let you know as soon as I know anything.

Thank you visiting. Please pray for all litlle NB and cancer warriors. Everyone of them needs your prayers. Thank you. Love you all.

Nina

Friday, September 23, 2005 9:22 PM

Dear Friends!

Thank you for checking on Ronnie. We are done with testing. The MIBG was done under anesthesia as expected. This scan is too long for so small boy, who is almost unable to stay calm for a minute. It took longer than an hour this time and I don't need to say it scares me. I have a feeling they have found something and only to be sure did longer scan. The technician told me it was a normal standard test, but I'm not so sure.
We have no official results now, but were told the CT scan looks great - what a relief.

Ronnie was realy sore yesterday from the bone marrow aspiration and didn't want to to clinic to have his labs etc. done. But my great mother-in-law who came to pick us up spoke to him for 2 minutes and he stright changed his mood and off we were.
He did very well with all examinations and at 12:30 pm we we on our way to one of Temi's brothers and his family and have spent whole afternoon with them.

Tomorrow we have another family day and we are looking forward to see all again.

Temi should come on Sunday and on Monday or Tuesday we will get the results. Hopefully we will get good news ! I will let you know as soon as I know anything.

Thank you visiting. Please pray for all litlle NB and cancer warriors. Everyone of them needs your prayers. Thank you. Love you all.

Nina

Wednesday, September 21, 2005 6:42 PM

Hello Everybody!

The first day is behind us.
We had to be at 9 am in hospital to get the CT scan and bone marrow aspiration done. My mom went with us, which was great support for us both
We were asked if would like to have the CT scan done without sedation. Ronnie wasn’t so sure about it, but after the nurse has explained him what they are going top do, he said: “Yes… Am I a big boy now?” Everybody nodded of course.

He is a real champ! During the whole procedure he was laying without moving and watching cartoons. It took twenty minutes and only twice he asked if I’m there and watching him.

After that we had to wait an hour for bone marrow aspiration. Ronnie was very hungry (he had his last meal more 12 hours before). Fortunately granny was with us. She is so good with him and was keeping him busy.

The aspiration was done without anesthesia too. He has got only some sedative medication, which made him drowsy. I was with him, but he doesn’t remember a lot from the procedure.
I’m so proud of him. He is getting so grown-up!

He is doing his puzzles now and I think he goes to bed very soon today. We both are still very tired from the flight yesterday.

Tomorrow we have labs etc. and injection for the MIBG on Friday.

Please pray for good results.
Thank you all for visiting.

Nina

Wednesday, September 21, 2005 6:42 PM

Hello Everybody!

The first day is behind us.
We had to be at 9 am in hospital to get the CT scan and bone marrow aspiration done. My mom went with us, which was great support for us both
We were asked if would like to have the CT scan done without sedation. Ronnie wasn’t so sure about it, but after the nurse has explained him what they are going top do, he said: “Yes… Am I a big boy now?” Everybody nodded of course.

He is a real champ! During the whole procedure he was laying without moving and watching cartoons. It took twenty minutes and only twice he asked if I’m there and watching him.

After that we had to wait an hour for bone marrow aspiration. Ronnie was very hungry (he had his last meal 12 hours before). Fortunately granny was with us. She is so good with him and was keeping him busy.

The aspiration was done without anesthesia too. He has got only some sedative medication, which made him drowsy. I was with him, but he doesn’t remember a lot from the procedure.
I’m so proud of him. He is getting so grown-up!

He is doing his puzzles now and I think he goes to bed very soon today. We both are still very tired from the flight yesterday.

Tomorrow we have labs etc. and injection for the MIBG on Friday.

Please pray for good results.
Thank you all for visiting.

Nina

Tuesday, September 20, 2005 10:24 AM

Hello our dear friends!
Just wan to let you all know Ronnie and Nina landed safely and are home now. Both are doing well, but are very tired after the long flight.

The testing starts tomorrow at 9 am eastern european time, which is 11 pm pacific time. I hope all goes well. If we get some news I or somebody from the family will let you know.
I believe in clean scans, but anyhow keep Ronnie in your thoughts and prayers. Thank you!!!

Have a nice day!

Tem

Tuesday, September 20, 2005 10:24 AM

Hello our dear friends!
Just wan to let you all know Ronnie and Nina landed safely and are home now. Both are doing well, but are very tired after the long flight.

The testing starts tomorrow at 9 am eastern european time, which is 11 pm pacific time. I hope all goes well. If we get some news I or somebody from the family will let you know.
I believe in clean scans, but anyhow keep Ronnie in your thoughts and prayers. Thank you!!!

Have a nice day!

Temi

Sunday, September 18, 2005 5:15 AM

Hello everybody!
My nerves are working again. I should sleep now, but can not even close my eyes. I’m thinking only about the scans next week. I don’t know why, but I’ve feeling we will get no good news this time. I didn’t think about it the whole week, but since Friday I can not think about anything else.

We have good week, very busy but it is OK. A lot of paperwork has to be done and I don’t know how many offices I have seen in the last five days, but I can live with this. It is nothing compared to hospital stays and ER and clinic visits.

Ronnie is doing well. On Thursday he has started 6th and last round of Accutane.
Is feeling great and enjoys the good weather here and is most of the time outside in the garden.
He has found two new friends in the neighborhood and has spent a lot of time with Cousin Jack. He wanted to visit Disneyland, but we were to busy and have promised him to go right after the scans. He was OK with it. I hope we will be able to come back after the scans. Hopefully we won’t need to start new treatments and get NED results. If not we will stay in Europe near to our regular doctors.

Tomorrow at 3:30 pm we fly from here and are at 4:25 pm on Tuesday at home. This flight is one hour shorter than the last one.
On Wednesday (this day marks 6 months since stem cell transplant) we have CT bone marrow aspiration, on Thursday labs etc. and on Friday MIBG. Bone scan won’t be done.
Temi comes on Sunday at 11 pm. And on Monday or Tuesday we should get the results.

Temi has day off today so we will spend the time together and try to have some fun!
Thank you for visiting and please pray with us for good results.
Love you all.
Have a nice Sunday!

Nina

PS: Keep your fingers crossed!!! Thanks.

Sunday, September 18, 2005 5:15 AM

Hello everybody!
My nerves are working again. I should sleep now, but can not even close my eyes. I’m thinking only about the scans next week. I don’t know why, but I’ve feeling we will get no good news this time. I didn’t think about it the whole week, but since Friday I can not think about anything else.

We have good week, very busy but it is OK. A lot of paperwork has to be done and I don’t know how many offices I have seen in the last five days, but I can live with this. It is nothing compared to hospital stays and ER and clinic visits.

Ronnie is doing well. On Thursday he has started 6th and last round of Accutane.
Is feeling great and enjoys the good weather here and is most of the time outside in the garden.
He has found two new friends in the neighborhood and has spent a lot of time with Cousin Jack. He wanted to visit Disneyland, but we were to busy and have promised him to go right after the scans. He was OK with it. I hope we will be able to come back after the scans. Hopefully we won’t need to start new treatments and get NED results. If not we will stay in Europe near to our regular doctors.

Tomorrow at 3:30 pm we fly from here and are at 4:25 pm on Tuesday at home. This flight is one hour shorter than the last one.
On Wednesday we have CT + bone marrow aspiration, on Thursday labs etc. and on Friday MIBG. Bone scan won’t be done.
Temi comes on Sunday at 11 pm. And on Monday or Tuesday we should get the results.

Temi has day off today so we will spend the time together and try to have some fun!
Thank you for visiting and please pray with us for good results.
Love you all.
Have a nice Sunday!

Nina

PS: Keep your fingers crossed!!! Thanks.

Tuesday, September 13, 2005 9:26 PM

Hello dear friends!

Sorry I haven't been up-dating last few days.
We are doing well and are pretty busy here.

Ronnie is getting used here. He is just happy to be with dad again. He was the nummber one for him last days. They were doing a lot together and had fun.
We are searching for pre-kindergarten for him to go there for few hours every second day or so. He wants to play soccer and ice-hockey so I will look if it is possible.

I'm so busy, that I have no time think too much about the testing next week.
On Monday we are flying back to Europe - so next 16 hours flight, but Ronnie always enjoys the travel and is good boy.

I'll try to write more tomorrow.

Thank you all for visiting,. Take care of you. Love you all.

CHECK OUT THE PHOTO PAGE!!!

Nina

Thursday, September 8, 2005 11:54 AM

Hi everybody!

So we are here and happy to have this monster flight behind us. We have spent 20 hours with traveling. We were so tired, but couldn’t sleep well the first night here.

Thanks my wonderful husband and brother with his family we were welcomed here with yummy yummy home made food, full fridge, clean house, internet access, NEW CAR for me!!! And and and…. So I don’t need to carry the first days.

Ronnie is doing very well. He is so happy to be with his dad again. He has missed him much.
He remembers all here quite good. He’s just playing in the garden and seems to be happy. Medically he’s doing well to. He was checked on Monday and his doctor sad he is a picture of heath. So I hope his scan will go good too.

Now we have to become acclimatized and I think the best way to do it is go to beach! It is not so warm here but it doesn’t matter.
Temi is not here, he left early in the morning and hopefully he will join us for a dinner later.

So dear friends – beach is calling and we have to check out the new car!
Thank you for visiting. I will write more soon.

Take care of you.

Nina

Monday, September 6, 2005 6:10 AM

Hi everybody!

I just want to let you know we are leaving tomorrow at 04:05 pm and are landing at 09:55 pm in California.

We are quite busy here, so next time I will probably up-date from California.

Thank you.

Nina

Thursday, September 1, 2005 8:21 PM

Hello Everybody!

I have got the schedule for the scans. The doctors were so kind and showed consideration for us and our planning. We are starting on September 21 with CT and bone marrow aspiration. Next day we will do some labs etc and on Friday 23rd we have MIBG.

Temi has asked me if I want and is more important to have him here with us for the testing or rather for the results, because it is not possible for him to stay here so long. We have been discussing that and my decision is to have him here for the evaluation. I don’t what to expect and it is possible we have to some resolves about potential treatment. And for me is this the hardest part of all that.

So me and Ronnie will fly next week to California and will come back probably on Monday or Tuesday before scans.

Ronnie is doing well. Has runny nose, but nothing serious. He spends lot of time with his grandparents, aunts, uncles, cousins and friends. I get to see him only in the morning and at evening. But I’m OK with it. He has to spend as much as possible of the time with family, so long we are here. And I can do my arrangements.

Please pray for good results, that we stay NED and happy long life for mighty Ronnie.

Thank you for visiting. Do you believe in miracle? If you don’t yet – check on Jacob and let convince yourself.
Thank you.

Please sign the guestbook and let us know you were here. Love you all.

Nina

Monday, August 29, 2005 10:33 PM

Hello dear friends,

We are so busy at the moment. I'm sorry, but I really had no time to update.

We had good weekend.
On Friday we have picked up Levi from school that he could spend some time with his dad, before he flew to USA. After lunch we went together to our amusement park. All boys (Ronnie, Levi and Temi) had great fun. I was happy to have to stay with Ronnie the whole time and that he’s too small or young for most of these crazy monster rides etc. We have enjoyed together carousel and truck ride. He was only little upset about to be too small for Ghost Train, but was OK with it later and said he will eat more to grow faster. I only hope he will ever reach mark of 120 cm (47 inches).
At 10:30 pm we were home with one sleeping little boy and one awake big boy, who stayed up with us until midnight. It was very nice evening with him. We have talked a lot. He is no boy anymore and is becoming young man. We will miss him a lot.

On Saturday we went to shopping centre. Oh man the boys can screw money out of their dad!!! But when they “really need it all”!!!!!
Afternoon was Good-Bye party in our house. The whole family was here. And we enjoyed it. It was so nice to have them in our house all together. I really hate it to leave them, but it is not for ever.

On Sunday we hadn’t so much time together. Temi flew at 4 pm. In the morning we have packed his suits, than just quick lunch at home and off we were to airport.
On the way home Ronnie felt asleep and Levi just looked out of the window. I asked him, if he is OK and said he will be OK. So I asked again if it does mean he is not OK now and he just nodded. I asked if he wants to speak about it and he said NO.
But he did. Few minutes later he said: “I’m going to miss dad…”
And I just said I know.
“And I’m going to miss Ronnie… I worry about him.”
“Yes, we all do.”
“Is he going to die?”
I didn’t know what to say. “Everybody is going to die.”
He looked at me and said: “I pray for him every night… And believe he will not die.” I didn’t know how sweet this boy can be or is.
I drove him home to his mom. He looked at me and gave me a HUG! First hug from him ever!!! And than he whispered into my ear: “I’m going to miss you too.”
How lovely. It seems our relationship is improving! Unfortunately just now! But I hope it is not too late and we will have enough time to work on it.

Today I had two doctor appointments, so Ronnie was at grandma’s whole day and I can not tell you what he was doing. Nobody told me. Only that it is secret!
Tomorrow at 10 am I’ll meet our onco-team to plan the testing week and future care. I hope I will know more than.

Wish you all good night or nice day!!! And thank you for visiting.

Nina

Friday, August 26, 2005 1:27 PM

Hello Friends!

I’m typing this with tears in my eyes. Little sweet David became angel. Please visit his page and sign the guestbook to let his parents know you are praying for them.

Thank you.

Nina

Wednesday, August 24, 2005 8:46 PM

Hi dear friends!

We have busy days now.
Most of you know it, but for those who don’t know yet: It’s 100 percent sure we are moving! Right now, we are going to go one year at a time to California. It’s great relief for all of us.
We haven’t sleep for many nights and I’m so tired. Last few days this - was a very emotional time and I’m happy to be over it. The uncertainty was terrible and the memories from the last year, yesterday marked one year since Ronnie’s diagnosis.

Now we know where we will live next twelve months and that brought peace to my soul and gives me strength. We have only good memories on this place. We have had great time there. And Ronnie was born there!!!

We have been there in July and made all ready for our possible return. We had always the feeling we were going to come back.
Temi will fly alone on Sunday. He has to be there on Monday, but me and Ronnie have to stay here. We have some medical appointments before we can start. We are going to do his scans and testing here at least for the first months. It will be challenging especially the traveling, but here we have our great doctors’ team. They know him from the beginning. We will see how we can manage it all later.
His next scans are in due in September. We have no schedule at moment; this is one of most important thinks on the long list.
Hopefully we will get only good news. I’m thinking very positive now (ask me 2 weeks later!). Hopefully all scans and tests will be clear and we won’t need to start new treatments. This would change all… OK I don’t want to think and speak about this possibility now.

OK. Thank you all who are reading my entry.
Thank you all who has e-mailed and called us last days. Sorry we had no time to get all answered yet, it has been so much. Please be patient. But thank you so much for you support.

And one request: Please pray for all little cancer warriors and especially for two Florida sunny-boys who are not doing well right now: David and Jacob.

Love you all. Please don’t forget to sign the guestbook.

Nina

Monday, August 22, 2005 4:53 PM

Hello everybody!

So here we are. It’s almost one year since Ronnie’s diagnosis. On August 23, 2004 we were told our precious son has cancer.
Neuroblastoma – a word we never heard before. Horrible diagnosis and more horrible prognosis - 40 percent survive next 5 years. We were devastated. We couldn’t believe this happens to our only son. We don’t want to think much about this time, we believe in happier future.

Today five months ago his stem cells have been given back to him and he recovered wonderful. We are almost done with treatments for now and pray that he continues do so well and for long happy life for him.

We would like to thank all our family members, friends and everybody who visited this site for your support, care and love. Love you all!

Ronnie we are so happy and proud to be your parents. WE LOVE YOU BABY BEAR!!!

Temi & Nina

Friday, August 19, 2005 9:13 PM

Hello dear friends!

First I would like to thank you who signed the guestbook. It means so much for us.
Just the few words like – we were here – make us feel so good, because we know you care. Thank you all! We love you!

We are doing all well.
Ronnie is doing great. He has still troubles with some tones, which are uncomfortable for him like plastic bag and so, but he handles it well.
He plays a lot outside. This week was especially good for him, because we had Beni (his cousin) for 4 days here. They love each other and have much fun together.
They had a tent in garden and slept two nights there (with Tem of course)! They loved it. I was sleeping in the house, because I prefer my own bed.
Yesterday we took them to children’s theater and had wonderful time together.

Ronnie was a bit sad, when Beni had to leave. But he will get to see him on Saturday or Sunday.
We will spend our weekend in nature with Temi’s parents at lake.

Wish you all wonderful sunny weekend!

Thank you for visiting and checking on Ronnie!

Nina

Tuesday, August 16, 2005 8:51 PM

Hello everybody!

Only quick note. We all are doing well.
Ronnie's ear is OK and he is feeling great.
I'll write more later.

Thank you for visiting.

Nina

Wednesday, August 10, 2005 10:11 PM

Hello dear friends!

Ronnie is doing well. He went with his dad, uncle and cousins to the athletics championships this afternoon. They are still there and are having fun. The weather is terrible here today, but he doesn’t want to home. And it is quite late here 10 pm! I have just spoken with the on phone. It’s OK when he’s feeling good enough and is with Temi.
He will come home with great experience
Here it’s raining all the day long, it’s windy and very cold. Not ideal weather for sports.
I stayed at home. I’m not feeling well last few days. I’ve caught some bug or so.

Just want to ask you for speak little prayer for brave Jacob he is going through a very though time. Please visit his page and let message in his guestbook.

And check on Julianna for inspiration.

Thank you for visiting. Love you all.

Nina

Monday, August 8, 2005 6:40 PM

Hi everybody!

Ronnie is finally doing better. Today he was all day out of bed playing around.

Weekend was OK. He was happy to see daddy again.
He is not taking any pain medications the day over only for night he gets Panadol.

Hope he will be feeling well tomorrow or after tomorrow to go to see the World Athletics Championships live.
He watches them whole day on TV, but wants to be on the stadium to see all live. Hopefully his health continues to improve.

Thank you for visiting and please continue to pray for all little cancer warriors.

Nina

Friday, August 5, 2005 9:15 PM

Hello friends!

Thank you for visiting.
Ronnie was feeling better today. It seems the new antibiotics are kicking in. He didn't complain about any leg pain, but is still taking Panadol.
He colored a bit in the morning and then watched Shrek – with very low tone. This didn’t change. He is still so sensitive for any noise, especially plastic bag!!!
He doesn’t eat much, but drinks well.
He took a short bath and went to bed around 7 pm.

Tomorrow is daddy back and I hope he will be feeling well enough to have some fun together.
I’m sure dad brings some presents for him, hopefully he can enjoy them.

I wish you all great weekend full of sun and fun.

Nina

Thursday, August 4, 2005 8:24 PM

Hi everybody!

Guess what we have done today.
Yes we have spent half day in hospital.

Ronnie woke up not feeling so well, but not worse than the days before. But two hours later he run fever up to 40 °C (104 °F) and complained about leg pain.
I didn’t panic and called our pediatrician. He told me had no results from the cultures, but will call me in 10 minutes back.
In the lab have told him they need 24 hours more to get results. He said we should better go to emergency room, they can do more.
I don’t know what happened in the 45 minutes we’ve were in car on the way there. But the results were there and they knew what a type of bacteria it is. They weren’t surprised about his fever and pain. The antibiotics he was on don’t work on this type of bacteria, so it like he were without treatment for 4 days.
I have asked them about the leg pain and were told seems that it (the bacteria) is in his knees too and I don’t need to worry.
My mom came to the hospital to stay with us. We were there 4 long hours. His temperature went down to 38°C (100°F) and we could go home.
Ronnie was only tired and wanted home. He is sleeping since we arrived at home. Only twice he was up for a minute to drink. He must have some bad dreams all the time. He is talking a lot, was calling his dad, but most of it I don’t understand.
I hope he will have a restful night.

Thank you for visiting.
Take care of you.

Nina

Wednesday, August 3, 2005 10:57 PM

Hi everybody!

So today we had a better day. Ronnie was bit more active, but still we can not manage the pain without medication. He wanted to play with Lego. I brought him the box, but he started to scream, because he couldn’t endure the noise of the bricks. And was very upset about it. He has tried it with puzzle and was doing it for about an hour.
I have spoken with doctor about his sensitivity to different tones and he said it is normal and we don’t need to worry about it.

Later in the afternoon came granny and brought him Tiramisu, but had no appetite. He ate a bit of it for a dinner, but really not much.

Daddy left today for USA again and comes back for a weekend.

Hopefully Ronnie can sleep this night and feels better tomorrow.

Thank you for checking on him and leaving nice messages in his guestbook.
Wish you nice day or good night.

Nina

Tuesday, August 2, 2005 9:35 PM

Hi everybody there!

OOOOHHHHH…. What a day again.

Last night we have repeated our night trip to ER.
Ronnie had big earaches and we decided to see a doctor. His ear wasn’t any better, if not worse. They think he has some sort of bacteria in there. They are doing cultures. Hopefully we know more tomorrow. He has got antibiotics and some pain med.

He wasn’t happy today. I won’t describe the outflow from the ear. Nothing nice. He was lying on the couch and watching cartoons - without tone – all the day. He is very sensitive for any noise now.
I enjoy the silence in the house too.

He went to bed at 8 pm and is sleeping now.

I hope the antibiotics kick in, he can good rest at night and feels better tomorrow.

Thank you for visiting and checking on Ronnie.
Let a note in the guestbook – your words mean so much for us.

Nina

Monday, August 1, 2005 9:08 PM

Hi everybody!

We had nice weekend, which we spent with friends of us and Tem’s parents at their cottage at lake.
The weather was OK, which means not so cold!

Ronnie was doing extremely well – running, riding bike, fishing like every other boy.
Sunday evening he was little irritable and asking to go home – which not normal for him while he is playing with other kids.
On the way home he felt asleep.

At home he started to complain about headaches and low-grade run fever. I gave him Panadol and 10 pm he was sleeping in his bed. We didn’t think much about that - cold or so, because the kids were running in lake all the time and nobody could get them out.

At 2.30 am I heard him calling me.
He was still sleeping, but crying. He woke up and complained about earache. I couldn’t calm him down.
So we woke dad and were off to emergency room.

You should see relieve in his face after they have put something like EMLA cream into his ear to puncture it. His spirits were up in minutes.
As always when we are on our nightly trip to ER, we had to stop at gas station to buy a soft toy.
But this time he walked in on his own! Usually he was feeling so bad and was neither able to stay awake nor to walk. We have to pick up something for him. But it used to be in the cancer times!!!!!!!!!!
He was a bit disappointed – they haven’t any Diddl. So he picked up a big panther.

We were at 5 am back at home. He went to bed and was sleeping in few seconds.

All the day he was feeling good, but in the evening he was running fever again. He has got Panadol again at is sleeping now.
I hope tomorrow he will be doing better.

Wish you all nice day or evening. Thank you for checking on Ronnie. Take care of you.

Please don’t forget to keep all children fighting cancer in you prayers.
Thank you.

PLEASE SIGN RONNIE’S GUESTBOOK!!!!!

Nina

Friday, July 30, 2005 00:35 AM

Hi everybody and sorry for the delay in updating. We were so busy the last two weeks.
And the time flies.

Ronnie spent wonderful week in Spain. The kids had great time. The grandparents say they had too, but looked both very tired and needed one week of rest at lake after that.

He is doing well. Only his skin is dry, but this we manage with tons of lotion. Worse are his nails now. They don’t look good and are pretty painful.
But our doctor says this is all normal during Accutane treatment.

Today marks 130th day after his stem cell transplant. Can you believe it? We are so proud of him. He has put some weight on and looks and feels just great. If you don't know I have added a picture of him on the photo page some weeks ago - so take a look and you will see.

Levi (Ronnie’s step brother) has spent a week with us before he goes to school again. The boys had good time together having fun and enjoying the warm days.

We were with Tem in USA. We still don’t know where we will spend our next year. It makes me a bit nervous. I’m not afraid where we have to go, but the uncertainty is difficult for me. We have to plan Ronnie’s future treatments and all the check up’s.
We will see. Everything is open in this moment, but it can change within hours. So I have to patient and wait.

The summer is almost over here and I hate it. I need more sun.
We will probably have family vacations in August. Only we three together. And I have to plan and organize it all. And it is not easy.

1) we have to go land with good medical care
2) there must be water park – Ronnie’s wish
3) there must be good golf places – Temi’s wish
4) there must be beautiful sea and beach and it must be hot there – my wish
5) and it all with good cuisine!!!!!!!

So as you can see it is not possible to find place like this. Or is it???? I you know some nice resort let me know.

It is pretty late here. I have to go to bed.

Wish you all nice weekend. Enjoy the summer. Take care of you.

Don’t forget our little friends fighting cancer. Keep them all in your prayers.

Thank you for visiting and don’t forget to sign the guestbook.

Love you all.

Friday, July 22, 2005 7:26 AM

Hi everyone!

Just quick note. Everything is OK here. I will write more soon.
Alot is happening right now.
Wish you all nice weekend.

Thank you for visiting and checking on Ronnie. He is doing pretty good and enjoying summer.

Nina

Friday, July 15, 2005 2:31 AM CDT

Hello Ronnie’s friends,

this is granddad. Just quick up-date.

We have spoken to him now on a phone. He is doing very well and enjoying the time with his cousins, brother and grandparents. And told us he doesn’t miss neither mom and dad nor us. It seems he is having great time.

With Nina we have spoken yesterday. They both are well too.

Wish you all nice weekend. And thank you for checking on Ronnie.

George and Anna

Friday, July 8, 2005 11:48 AM

Hi everyone!!!

Not so much to report. We all are doing fine. The summer is here, but is cold.

Ronnie is doing great. Yesterday we had friends of mine here. They have son in Ronnie’s age and a baby. Mike – the boy is quiet child, who can play for hours and you won’t hear about him. But not our Ron. It is always dubious, if you don’t hear him and has only mischief on his mind. We all were outside sitting in the garden and them two playing together around. They disappeared for a 10minutes or so. We didn’t hear them, but didn’t think much about it.
We had to look for them, because they had to go home and couldn’t find them.
To make it short: there is still some garbage from the building site and they have found a can with rest of insulating foam. I don’t know what they have done. Simply they have played with it and Mike has got it on his hands. (I think Ronnie has sprayed it on his hands!!!) And Ronnie got great idea; they will get it away with sand! OK – no bad idea, but!!!
There was only red sand, which is used here as building material and is hard to get the red color away from anything. I don’t need to describe how the boy looked like. The foam was still on his hands and it was hard and the poor boy was complete red. Ron was only red all over his body.
We have asked some people what we can do to get it down and everybody told us, we can not get it away, just to wait few days and it will go away.
I don’t know what happened after they went home. I’m afraid to call them and ask.
So if you read this we are sorry and hope Mike can use his fingers!!!

Ronnie will leave us on Sunday. Temi’s parents take all of their grandchildren to Spain for 9 days. That makes five kids in age from 4 to 11 years: Ronnie 4, his step brother Levi 11 (Temi’s son from first marriage) and cousins Beni almost 5, Sami 8 and Alina 10 years. I hope they know what they do.
I was hard decision for us to let him go. But we made this decision. Spain has good hospitals and they will stay near to Valencia. We didn’t tell him about the trip until today morning. We have spoken with our doctor about it and he said he can fly. He checked him today and said he is in good condition. Ronnie is so happy. This will be time of his life. I know he will enjoy it. But I will miss him. I was never before for so long time without him.
But he is a big boy now. He started his 4th round of Accutane today (do you believe today we have day 109 since stem cell transplant!!!). And he knows it is very important to take it every day. I know he can cope with it good. He asks me every day: “Mommy is it time for crazy beans now?” or “Do I have to take the crazy beans today?”
I don’t know if you know it, but crazy beans little colored plastic beans and kids collect them.
And he calls the capsules – crazy beans.

It seems we will use this time and fly to USA for some days. We just have to do it. We have to pay taxes etc. there and Temi has some appointments. So it will be no vacations for us. And we will meet my brother, who has birthday in July, and all his family, visit some old friends etc. It won’t be so bad.

We have still no internet access at home, but it doesn’t matter because we are everyday at my or Tem’s parents, so we can check out mail etc.

Thank you for visiting and signing our guestbook.

And please don’t forget to speak a little prayer for all the little cancer warriors tonight.
Thank you.

Have a nice day and take care of you.
Nina

Monday, July 4, 2005 08:29 PM

Hi everyone!

First I would like to thank everyone, who helped with the „little“ surprise. Thank you everything went great – better than I could imagine.

For those who don’t know short story.

Sunday was Temi’s birthday. And I though this year I’ll make it special.
Maybe you know we had to leave our old house in the beginning of June. This is no story to talk about it here. We were forced to move out there. Someone tried to make life hell for us. We have thought we have rent house in nice friendly neighborhood. But there is somebody who really hates our family.
So we have decided to move out. For Ronnie and all of us. We have stayed at my parent’s for this time. Not so big problem, they are living in a big house and are always happy to be together with us and it was for short time. We have started to build a new house long time before this event. And it should be ready this summer.
So was not so big deal for us and my parents. Few weeks we could live together.
It is absolutely Temi’s dream house. It is house he always wanted to build, when we definitely come back from US. He was always dreaming about it – as long as I know him.

Temi was out of town last week. I could realize my plan. The house was almost finished. With great help from the site manager, moving company, our family and friends – on Saturday evening was all prepared to spend the first night there.
Temi’s older brother did wonderful job to keep him and his twin brother (for him was it surprise as well) busy from Friday to Sunday afternoon. I really don’t know where they were and what they have done all the time, but sure is – he wasn’t in the house since Monday, when he left us and flew down to CR.
We (our families and friends) have all organized. So on Sunday morning in house was hot and cold running water, gas, electricity, it was furnished into detail, actually everything from us were there, from ski equipment to toothbrushes and his cars were in the garage.
Sunday afternoon he though I was with Ronnie at my friend’s and was looking forward to a party – which should be in restaurant in the city. He was with his brothers and some friends of them.
When everything was ready and everybody (all family and friends) was in the house - the site manager called him and told him, there were some troubles with the house, he had to come immediately.
He came in ten minutes and awaited problems. The site manager was waiting outside and told him he has to come in to see it.
They both -he and his brother were so surprised! He was just standing in the door for ten minutes and couldn’t believe his eyes.
Outside was big party for them and it was prefect.

But now it seems we will go back to USA or to Czech Republic in August. Nothing has been decided yet, it’s all still up in the air. The next weeks show us more.

Take a look - I have decided to add a photo of Ronnie in the photo album. I’ve though I will never make it but now it is here and you can see his hair – all is back. Actually it’s not as dark as on the picture!!! It was taken today, when we went to swim. He had so much fun! We couldn’t get him out of the water. This is one very short moment, when he was out.

The only problem we have with our new home is – we have no internet access now. So I will be a bit behind with up-dates next week or so.

Hope you all had also wonderful weekend.

Take care of you. Thank you for visiting!!!

Nina

Tuesday, June 28, 2005 11:40 AM

Hello everybody,

we had wonderful weekend. We had so much to celebrate. Ronnie’s scans went great and we celebrated solstice. We have spent the whole weekend at Temi’s brother’s summer house at lake. It was just perfect. The weather was OK and kids had a blast. The most time they have spent in water. Despite all my efforts to protect Ronnie against sun he has got tan quickly and is brown like a bear. But he looks great and it is easier to see his growing hair. This round of Accutane we don’t have so much problems with it. His skin is not so dry as before and without all red areas. Only his lips are still very dry, but he likes Labelo (I think we have all colors).

He was swimming, fishing, playing in wood, helped to prepare the catch at fire and and and. He is happy and full of energy. He was fooling with other kids as normal healthy child. We hope in better future for him.
He was sleeping outside all the time with other men. He didn’t want to sleep in the house. He told me - he is not a girl or baby. But was sleeping close to his dad and holding his arm tight.

Sunday evening we went to ER. Just seconds before we left. Ronnie was playing with anti-mosquito spray and squirted it in his eyes. It was not as bad as I though in the first moment. We have got eye drops and both his eyes look OK now. I like the everyday things. After long time it was our first ER visit without to be admitted with fever or low counts due chemo. Isn’t that nice?!

I hope you had nice weekend too.
Thank you for visiting.

Nina

Tuesday, June 21, 2005 10:22 AM

GOOD MORNING DEAR FRIENDS,

we have the results! And with a big relief I can report you following:

Blood – all counts lower, but in limit, nothing out of norm
Urine – all levels normal
Bone Marrow – CLEAR!!!
CT scan – CLEAR!!!
Bone Scan – CLEAR!!!
MIBG – CLEAR!!!

We came into our doctor’s office for our appointment. He was not here. We had to wait 10 minutes. The longest ten minutes in the last week.
He came in with a large smile on his face. Shook our hands and said the short wonderful sentence:

“Everything is absolutely clear!”

He went with us through all scans and tests. The readings took so long because they will be always 100ure before they use the words:
“NO EVIDENCE OF DISEASE”

I’m still not aware of it.

So we can plan a bit again and celebrate the solstice, which is a great holiday here. We will go to Temi’s brother cottage at lake. It will be a big family party and celebration with lot of fun, laughs and joy. I just love it.

Today are that 3 months since Stem Cell Transplant! The time flies!

I would like to thank – my parents, my brother jay with family, Temi’s parents, his brothers and families, all our friends - for everything - your support, love, understanding, patience and time. You all were and are an enormous help for us.

Special thank to my husband – You are the best daddy and man I know. Thank you for your strength, love, patience and support. Without you I wouldn’t make it.

And a very special thank to my beloved son – my everlasting inspiration, joy and love. You are such a brave and strong boy. Mummy and daddy love you more than we can ever say.

And thank you everybody who e-mailed us, or left a message in guestbook. Thank you for your encouraging words, prayers and time you took.

Love you all.

I hope in future I can report only so good news as today.

Please pray for all kids beating the cancer-beast.

Have a nice day, take care of you and don’t forget to give your kids an extra hug and kiss tonight.

Nina

Monday, June 20, 2005 4:44 PM

Hi everyone.

We just came back and had very nice weekend. The weather was great and Ronnie had so much fun there with all the kids, it was just wonderful to see him so happy.

We have Monday afternoon here and still heard no word from the dr’s. That makes me crazy. We have appointment in the hospital with the oncologists and I think they have no good news for us. I know I’m paranoiac. But I just think if they would have good news they would call us. No news means – bad news has enough time till Tuesday. I know I’m mad. You can believe me. I really am.
I still wonder how we could enjoy the weekend. But we did. When I saw our son so happy and full of energy, I thought everything will be OK. But here back in the city I don’t know what happen with me.

So enough about me.
Ronnie is doing very well. He enjoyed the flights as always.
It was just perfect. We are living north and the nights here are so long now – exactly said - we have no nights here in this season. And I just love it. You can believe there is nothing better than sit outside at 11 p.m. and the sun is shining, you have a glass Mojito and enjoy the night with nice people.
Ronnie can stay up longer and he just loves the noise and bustle. He needs some extra sleep afternoon, but to be up late in the night is something special for him. We had luck to have Temi’s parents with us, we haven’t seen them for a month or so and Ronnie loves them. He went fishing with his granddad, which is much better than with dad, has played soccer, hockey on grass, basketball, golf and much more. He had so much energy, it is just admirable for a 4 years old boy, who went through so much last year and had mega-chemotherapy with stem cell transplant only 3 months ago.
I can say he is as strong now as never before. He is full of energy and happy, running and jumping all the day long. He got nice suntan last days, his hair is growing pretty quick and seems to be a bit darker than before. But he is still a blonde!!! By the check up last week we have found out he has gained 2 pounds and grown 2 cm which is almost 1 inch in the last two months. We are so proud of him.
Only problem we have now is the drain skin, but that is not so big problem. We have to protect him more before the sun and put tons of cream on him.
Saturday he stayed up to 1 a.m. Sunday! Yesterday he was very disappointed about the Formula 1 results and all what happened there and went to bed at 11 p.m.

So as you can see we are doing very well now, but in the cancer world everything can change within minutes. But we hope for good results tomorrow. We will never loose hope. Please pray with us for our little son.
This beast has taken another two beautiful children last days and it makes me more than sad. Pray for all of them.

Thank you for all.
I hope I can report good news tomorrow.

Love,

Nina, Tem and cuddle bear Ronnie

Friday, June 17, 2005 3:02 PM

Hi Friends,

still no results from dr's.
We are all very nervous.
Now we are leaving for Summer Hockey Camp. We will spend whole weekend there. Actualy it's a work for Temi. But work with children is never a real work.
Ronnie will sure have a lot of fun with the kids there. They will be all older, but it's OK for him.

I hope we will hear from the dr's soon. I will let you know immediately.

Have a nice weekend. And please sing our guestbook.

Nina

Wednesday, June 15, 2005 4:37 PM

Hi everyone!

We are done with scans and testing. The MIBG scan was very long. It took more than an hour, but Ronnie did well.
He is sore from the bone marrow aspiration and is sleeping now. But as we know him, he will be OK tomorrow again.

We could here from the doctors this week, but it can take longer.
We are very nervous.

Thank you for visiting.

We will let you know!!!

Nina & Tem S.

Tuesday, June 14, 2005 04:33 PM

Hi everyone!

Just quick note. We are back home. Everything went OK.
Today we had echo, labs (blood, urine) and Ron was injected for the scanning.
Yesterday it was a bit more difficult. We couldn’t knock Ronnie out to do the scans. We have always problems with the sedation. The boy has just too much energy. But was very weak all afternoon and took a long nap at home.

Tomorrow the MIBG will be done under general anesthesia, which is better for him, us and the hospital staff. It’s very important scan and he has to lie absolutely still (what he can’t).

So please pray for good results.

Thank you for visiting.

Nina

Sunday, June 12, 2005 5:23 PM

Hello everybody!

I apologize for delay in up-dating. Sorry.

We live at my parents now. We had to leave our house, but it is another story, which you don’t want to hear. To make it short we were coerced into this on an ugly way. We are happy to be here now after the terrible last weeks of terror there.

We have got our schedule for the scanning and testing. It will be next week!!!
It take three days – Monday, Tuesday and Wednesday!
On Monday we have CT and bone scan, Tuesday echo and injection for MIBG and on Wednesday is bone marrow aspiration and MIBG. All scans will be done under general anesthesia.
And than waiting, waiting and waiting. I’m scared as anything. I don’t think about anything else. I can not sleep, I can not read or concentrate. Temi tells he is OK, but I know he isn’t. He is more than often awake in the night, but don’t want to talk with me about it.

Ronnie is doing great. We have our regular week doctor appointments, his counts are a bit lower than is normal, but it’s OK. He only needs platelets from time to time.
Three weeks ago he flew with his dad to Monte Carlo to see Formula 1 racing and he enjoyed so. He was thrilled to speak to his favorite racer Kimi Räikkönen and get a photo with him, which hangs over his bed now.
He loves to go to kindergarten. He loves the kids and especially Miss Ina. Last week he had a runny nose and had to stay at home. I enjoyed it to have my little cuddle bear at home, but he missed all there.
His hair is growing. And it’s still so bright blond as before. My husband has his hair back too. Bud with his hair he let his beard grow and that’s … not nice, I really don’t like it.

So tomorrow is the first day and I can only hardly breathe. Please keep your finger crossed for our boy. I hope I can report good news next time.

Thank you for visiting.

Nina

Thursday, June 2, 2005 5:09 PM

Hi everybody!

We are doing well here.
Ronnie loves kindergarten. He goes almost every day there and stays for some hours. He is feeling very good now.

I'm so nervous, because his scans will be probably soon in this month.
One day I think we will get great results - he is doing so well and is happy - and other day I feel down and have very black thoughts.
I think I'm going mad.

I hate this nasty cancer and I hate Neuroblastoma. It takes too much beautiful children from us.
Please pray for all the little fighters.

I'm sorry for this depressive journal. I hope in the next days I will be able to write a happier one.

Take care of you.

Nina

Monday, May 30, 2005 5:53 PM

Hi everybody!
Just want to say we all are fine. Nina is back home and doing well.
Ronnie is very happy about that. He has no leg pains more, is doing very well and jumping around.

Have a nice day

Tem

Saturday, May 21, 2005 07:53 PM

Hi,
it’s Tem again. Two up-dates in two days!!! WOW!!!

First I want to say:

RONNIE’S HAIR IS DEFINITELY GROWING BACK!!!

Is that not amazing?! I’m so proud of him and he of him self as well. It’s hard to see, because his hair is so fair, but I think I can see it.

He was not sleeping well last night. We were up for many times and talking about man’s stuff, you know. I have really enjoyed it.

He doesn’t want to eat much. For breakfast he drank he chocolate-milk and that was all.

He was busy to get a blowfly from his room in the morning. It drove him crazy. He wasn’t able to get it out. I was only laughing downstairs. He was really screaming at, but the stupid blowfly didn’t want to fly out. After 30 minutes he came to me and almost crying asked for a help.
We have done laundry together then and were off to hospital. On the way we have picked up Happy Meal at McDonald’s, but he didn’t eat anything of it! He wasn’t even happy about the toy which was in.
He told me his legs hurt and asked if I carry him. I didn’t think much about it. We rushed to Nina. He was so exited to see his mommy again and forgot all. He jumped into her bed and was better spirits immediately. He showed her his head and the new hair. She was surprised and couldn’t stop to touch him.

First on the way home I was thinking about his legs and everything. I have got strange feeling and have just finished a call with our oncologist. He was not so agitated as me and told me to keep an eye on him and he will try to change are schedule for the scanning to do it earlier. (The scans were in due in three weeks). Nina doesn’t know anything about it. If you talk to her, please don’t tell her anything about my scare. She is not feeling good and that’s what she really doesn’t need to know now.

The hospital visit has made him hungry bit and wanted to go eat pizza, so we went to our Italian. He ate a half of his Ronnie Speciale and was tired and wanted to go home.
He is watching a movie and eating ice-cream now. I hope he is better spirits tomorrow.

If you don't know Nina is in hospital (see the last journal) and is not doing so well, there are some complications. She will probably stay few days longer in there. They are controlling her pain, but there is no help for aching heart and soul.
We both miss her sooooo much and want to have her here again.

Thank you for you patience with me.

Tem

Friday, May 20, 2005 09:21 PM

Hi Friends,

today is Tem writing again.

I apologize, that I didn’t write sooner and I’m sorry I have to write under this circumstances and haven‘t done it in happier times. I have not so good news for you.
Ronnie is doing well, but Nina is in hospital.
Maybe you can remember some days after Ronnie’s transplant she was not feeling so good. First we thought some bug or so, but than we found out she was pregnant.
It wasn’t planned and also unexpected. We were so concentrated on the transplant and Ronnie’s condition and didn’t think about something like that. But we both were absolutely happy about this. It was so great news in very difficult time and made it all easier for anyone of us.

Yesterday she was not feeling well; in the evening she had some pains and later started to bleed. Short after midnight I have called Nina’s parents and asked them to come over and stay with Ronnie. When they came I took her to the hospital. She was immediately taken for a surgery.
It was not possible to save the baby. It is very sad news for all of us. Nina is doing not so good but OK. I’m so sorry I didn’t or couldn’t do anything. I blame myself for it. Maybe they

Ronnie is very upset, that mommy is in hospital. The morning was very bad for him. When he woke up I was still in hospital with Nina; and granny had to tell him what happened. He knew mommy has a baby in her belly and was excided about from the beginning.
He has cried hours long for his mommy. First when I came home and told him he can visit her right now, we could calm him down bit.
He wanted to stay with her in hospital over night and couldn’t understand that’s not possible. He is very sad little boy now. But fell asleep in car on the way home and is sleeping in our bed now.

I love Nina so much and am so sorry for her. Unfortunately I can not change it.
We hope she will get home soon. We miss her.

Tem

PS: I think Ronnie's hair is growing again. I have kissed him on his head now and felt little "something" there.
I can let my hair grow back too. Nina will be happy about it. She really hates my bald. But she will be more happy about Ronnie's hair, I think. It is big step on his road again.

Sunday, May 15, 2005 6:43 PM

Hi Friends!

What a holiday we had.
On Saturday 29th April we all (me, Temi and Ronnie) with our friends Sarah and Paul from Canada flew to Czech Republic to start our holiday and to visit my grandparents and rest of the family.
After two hours flight we landed by beautiful sunny weather with about 80 degrees. We stayed in hotel (because our friends were with us - normally we sleep at my grandparents) in downtown. Prague is really beautiful city, if you get to middle Europe you have to visit this nice historical town. We went to ZOO. It was destroyed by the flood in 2002, but you can see nothing more from the water. Ronnie was tired after the whole traveling, but enjoyed the animals as every time. He was riding a camel and pony and had so much fun. My cousins had their four kids were with us there too. It’s wonderful how the children can communicate together without speaking the same language. Ronnie can understand Czech pretty well, but definitely doesn’t want to speak. And here they were playing together whole day and having so much fun. I have got to hear some nice Czech words from his mouth!!!
He was so tired after the long day, that he felt asleep in taxi and didn’t wake up even for dinner.

On Sunday we took short walk in the city. Ronnie has discovered Diddl Mouse store and our walk was over. He felt in love with this mouse. He had some at home, but the real interest for them came in hospital during stem cell transplant. He has got some more in this time and his room is almost full since the return home. This mouse is a real hit in our house right now.
He wanted an XXXL mouse. This one was gigantic - about 7 feet high and with really big feet. We have tried to explain him that it is not possible to take it to a plane and fly to Austria. He made his angel face and his answer was – we could book one seat more for it in the plane and it could sit next to us in the cabin!
After one hour discussion we went off without this monster, but with eight smaller ones, rucksack, two T-shirts and lot of other rubbish.

On Monday we were at my grandparents and in late afternoon went to children’s hospital to get counts and cholesterol level checked. Cholesterol is very important since he’s on Accutane. Cholesterol and ANC were OK, which was great and could continue in our traveling. But his platelets were too low again. Nothing what we didn’t expect (he had nose bleeding twice this weekend) and was in due for transfusion. Unfortunately it was too late for this transfusion and we were asked to come next morning. We had to change our flight, but it was not so big problem. We left the family in afternoon. The flight was very short, it took only 1.5 hour and we landed in Innsbruck.

What a nice country Austria is. Innsbruck is beautiful small town in mountains near famous ski-resorts. We have to come back in winter.

Temi and Paul very quite busy and we didn’t get to see them often. Ronnie missed his dad lot in all the activities he was doing.
We Sarah and I were only relaxing.

Ron had great time full of swimming, riding a horse, walking in woods and playing. His appetite was very good on the fresh air and has gained almost three pounds there. That is wonderful since we have much trouble with his weight.
Five or six times we went to pet farm. He loved the animals there, especially sheep and rabbits.
He was feeling very well and has done big step in his recovery after transplant. He has much more energy again. We hope he will continue do so well at home and kindergarten.
He will start on Tuesday and is talking about it every day.

Do you believe it will be two months since the transplant next week? The time flies.

I hope you all are fine. Wish you all nice day. Thank you for visiting.

Love Nina

Friday, May 13, 2005 21:16 PM

Hi there!

Just quick note. We’ve safely landed and are back home. The trip was wonderful. We all are doing well. Ronnie is sleeping now, he was so tired. Sarah and Paul are still with us, they will leave this Monday.

Thank you for visiting. I will write more soon.

Love Nina

Don't forget to visit May’ Page and pray for her.

Sunday, May 8, 2005 12:52 PM

Oh dear friends!

This is my first chance to get into internet this week.

Happy Mother's Day to all moms!!!

Thank you for all the wonderful guestbook entries. It means so much for us.

We are doing wonderful!

We are staying near Innsbruck/Austria in nice wellness hotel. It is wonderful here. We enjoy every single second of being here. We met great people here. Ronnie is almost whole day in pool or whirpool. He loves water. And he goes every day through some special procedure, which really helps with his dry skin after Accutane.

Last weekend we were in Prague/Czech Republic. The weather was so nice. It was really hot there. The first thing Ronnie wanted to see was ZOO of course. So we had beautiful trip with our family on the first day there. It was so nice to see the people (my grandparents, aunt and uncles with families) again.
On Monday evening we were in Children's hospital there, to get Ronnie's counts checked. He has to become plattelets, but it was too late for transfusion, so we had to come on Tuesday and spent nice day with the cancer kids there.

I hope you all are doing fine. We have a week to stay here.
Thank you for visiting.

Please pray for May (visit her page on - caringbridge.org/mn/may). She is not doing well.

Love Nina

Babicky, dedeckove a vsichni ostatni Tomasi. Jak jsem slibila zdravime Vas cesky. Mame se skvele a vzpominame na Vas. Doufam, ze se zase brzy uvidime.

Friday, April 29, 2005 20:54 PM

Hello Everybody!!!!

It was real challenge and fight, but thanks our dear Colleen we are here again. She did great job and saved Ronnie’s page. We suspect who has tried to get into out computers. Nothing serious happened. All important data are safe. We will be very cautious all with internet payments etc. now.

It’s nice when you can work with your laptop anywhere in house without the lines and cables, but we have learned it’s not so sure.

One more Thank Colleen!

We will be leaving tomorrow morning. First we will fly to Prague / Czech Republic to visit my grandparents, aunt and uncle. If you don’t know I was born there. Czechoslovakia was communist land. My parents with my brother (we were 6 and 3) emigrated in the 70’s. And my whole family is still there. I can speak Czech! My parents try to speak with Ronnie Czech, but he doesn’t. He understands, but doesn’t want to speak. It is very difficult language.
We haven’t seen my maternal grandparents since summer last year - just few weeks before Ronnie’s diagnosis and paternal grandparents since Christmas. We will stay there for three days.
Our friends Sarah and Paul, who came from Canada to visit us and spend short holidays with us, fly with us. It should be nice trip.
Than we will fly to Innsbruck and Vienna / Austria. We will see if we can keep you updated.

Yesterday we had some doctor visits to see how Ronnie’s are and ask if he can fly. We have got yes. Only thing is, we have to go to hospital there twice a week to check his counts. We have talked to the dr’s there weeks ago and it should be no problem. He can get any transfusion there or any treatment. So we don’t worry.

Please pray for all the little ones and big ones fighting cancer. And especially for Kaitlyn‘s Page . She has her scans next week. Pray for great results for her. She is brave little girl and inspiration for many. Sign her guestbook, she and her family need some nice words.

Thank you.

Nina

Wednesday, April 27, 2005 10:28 AM

Hello friends!
We have got very sad news this morning. Little Alexia passed away. She is a beautiful angel now. She was so special brave girl fighting neuroblastoma. Please pray for her family.

Nina

Tuesday, April 26, 2005 16:01 PM

Hello!

Ronnie has decided he will send his grandma
Happy Birthday Bear
to her birthday she had yesterday.



I love you sooooo much mummi!
Ronnie

Monday, April 25, 2005 8:31 AM

HAPPY BIRTHDAY TO MY GREAT MOM!!! WE LOVE YOU MUMMI AND THANK YOU FOR EVERYTHING!!!

Hi Every-buddy,

We had wonderful weekend.
For me started it on Friday night. I’ve got “free” from family and rushed in the night-life. It has been so long since I was „out“ alone. I have met five friends and together we „drifted“ through the city. It was nice change after the isolation in hospital and now at home. I have really enjoyed it and came home at 4.30 a.m.
The boys along with Pocket slugged in our bed and I had to sleep in Ronnie’s bed. He came at 7 o’clock to wake me up. They have done breakfast and around 9 we were on the way to ZOO. Here was beautiful weather. We have stayed there almost whole day. Ronnie had so much fun with other kids and enjoyed the animals, who he loves. Talking about animals – on Thursday came daddy home, opened his car and our beloved dog – Pocked jumped out from the car with him. Ronnie was so happy to have him home again. They have played together whole evening and after Ronnie was in bed he took place before his room. He guarded him whole night. When I woke up at the night and went to his room to check him (which I do every night many times since the diagnosis) I had to jump over him. It was always his place and is good it still is. We were bit scared, if the dog didn’t get annoyed after week living without us at my parents house, but he didn’t. He is lovely dog.

On Sunday we had lunch with our friends in the town. All boys – the small and the big - went to their house after to watch Formula 1 and right after that to Arena to see national ice-hockey team game.

I can start to work again - at least few hours a day. Ronnie will go to grandma and later to kindergarten, or I can take him with me.
Some day this week we will go together to kindergarten and I will stay with him few hours to see how he is doing there. But I don’t worry he is very independent and friendly and has no problem to meet new people. It will be much better for him there instead of being with me alone at home all the day long.

We had noticed one big change. At ZOO he had played with one little girl and she asked him why he has no hair. And instead of say: “Because I have cancer.” He said: “Because I HAD cancer!” It was tremendous change.

Temi is very busy these days and it’s good for him. He has spent so much time in hospital with Ronnie and did great job with him. Now he needs to do something else and work all the day. He likes it. It’s no work for him – it’s fun.

We had noticed some side effects from the Accutane. Ronnie’s skin is really dry and itchy and needs a lot of cream. But he is still very happy and acting all day, except one nap everyday after lunch.
He is eating well and we hope he will put on weight. The Easter candy could help some (We had belated Easter last Sunday if you don’t know.).

Thank you for visiting. Have a nice day.

Love Nina

Friday, April 22, 2005 01:53 PM

Hello Everyone!

How do you like Ronnie's page? It looks much better now, doesn't it? We would like to thank Kaitlyn‘s Page
mum Colleen for making it brighter. Ronnie likes it soooo much. Thank you!

We are all doing well. Tomorrow we will go to ZOO to visit the animals after long winter. We have got some sunshine last days and hope for nice weather tomorrow.
On Sunday it would be better to go to ZOO, but it is not possible! Don't forget we have to watch Formula 1 again!!!!! Help me - I'm the only girl in this house and don't want to talk about cars and motors all the day!

I wish you all nice sunny weekend. Please pray for May
, she is not doing well now and needs some prayers.
Thank you and God bless you.

Nina

Thursday, April 21, 2005 10:44 AM

Hello Friends,

Today marks 1 month (31 days) since Ronnie’s transplant. And we have no complains. We are pleased with his progress and recovery,

Yesterday we were at Temi’s parents. Granny Lisa had birthday. Ronnie had a lot of fun with his cousin Beni. He is 100 him self again.
These two boys are always full of mischief. They are same age and do only silly things together.

First they have played golf in the hall, where granny Lisa used to have beautiful big glass vase! Used to have!!! It didn’t survive! We are so sorry Lisa, we know you have loved these vase. Sorry.
Than they have tasted, if soft toys can swim in the tub and submerged the whole bathroom.
And in the end (we should know!!! They were so still!!!), they have cut Beni’s hair short and tried to shave the remaining hair on his head. Beni wanted to look like Ronnie (how cute!). Which he really does now, it was not possible to do anything else with the hair. we had to shave it all.

It is worse to have the two together than the whole lot like last weekend.
But you can see Ronnie is doing well. And is eating good too. He is eating all the day long. On the way home he was screaming – he will Happy Meal. So around 10 p.m. we went to McDonald’s.

Just one normal day here. And we love it!!!

We came from kindergarten now. If Ronnie will be doing well, his counts are high enough and we are not in Austria, he will start kindergarten on May 3. He would like to start tomorrow, but it is not possible. But he is on the right way. It is a special kindergarten, it's for children with immune disorder etc. We think it will be the best for him for this time. It's a bit far from here, but very near to grandma's and grandpa's house.

His kidney function is not 100%. We have expected that, but hoped for better results. He got some non-aggressive medication, which should support the kidney cells and maybe it will recover soon. We hope so.
His height and weight are both still the same - only 32 pounds and 40 inches. But with his appetite, it could be better quick.

With the Accutane we have no problems and no side-effects. We will see. It will come. He used to have always dry skin and I’m a little afraid what happen. We have got oil-bath and some lotion, which we use twice a day.

For this weekend we are planning ZOO trip. The spring is finally here, so we have to spend some time outside.
And when Ronnie is doing so much better no, I will go out with my old friends after long long time. God knows how I need it. It will be nice change.

Thank you for visiting and your love. Don’t forget to sign Ronnie’s Guestbook. He loves to hear from you.
Love you all.
Take care.

Nina

PS: Please donate blood or platelets. Pray for all the beautiful children fighting nasty diseases. God bless you. Thank you.

And Sarah: I think I know what you have to tell us. Maybe we have the same to tell to you.

Tuesday, April 19, 2005 01:24 PM

Hi Everyone!

The Easter Egg Hunt went great. The kids had so much fun. It was really nice to see Ronnie being so happy. The weather was nice too, cold but sunny, so they could hunt the eggs outside. Tem‘s brother Paavo got mad idea and jumped whole afternoon in our garden in a bunny costume. The kids were acting around and hunting him. I think it won’t be possible to clean up the costume. They all got so dirty (not only the children, the men too – all of them), really like a pigs. But it was great fun.
The kids have got tons of chocolate and candies.

Yesterday we have spent half day in hospital for some testing on Ronnie. He had echo of his heart and kidney test to see if there is any damage after the strong chemo. Echo went OK. His heart works great. It seems there is some problem on his kidneys, but we have no complete results yet.

HAPPY BIRTHDAY!!!
to Granny "mummi" Lisa. She has her 58th birthday tomorrow. Ronnie is sending lots of kisses.



And you we would like to thank you for visiting. It means alot for us to feel your love and support.
Please sign our Ronnie’s Guestbook.
Please pray for all the little warriors.

Love Nina

Saturday, April 16, 2005 03:38 PM

Hi Everyone,

we are doing very good. On Thursday we went to clinic to get counts checked. And everything went fine. Only platelets were to low again and Ronnie got platelets transfusion.
He is himself again - running through the house and garden. We have no snow more, which is fine, but it’s still chilly outside.

Tomorrow is bunny coming to us. Ronnie has missed Easter and Egg Hunt this year, he was feeling so bad. So we have decided to make it later, when he is doing better. His cousins come too and we will make small party for the kids. It will be great to have full house again.

Yesterday we have started Accutane. It is retinoic acid and he will take it for 6 months.
After long consultation with doctors, we have decided against radiation therapy. He had perfect respond to chemotherapy from the beginning, had no unfavorable biologic characteristics and was NED (no evidence of disease) before transplant.
We hope he will stay NED for very long time. The next scans will be done in June.
We have spoken to some doctors in Austria, if it is possible to do Ronnie’s count checkups in their hospitals (in Vienna and Innsbruck) in few weeks, when we stay there. They were very kind. We were told it is no problem to do all what will be needed (counts, transfusions, port flushing etc.)
So we are planning our trip. The hotel reservations are done and tickets bought. So we will see if Ronnie will be able to fly and stay for some days there.

He is with is dad outside and is riding his new bike. I have to go out too. So wish you all beautiful weekend with a lot of sun.
We hope to see you (Jason, Jane, Jack, Rachel, Brad, Mark, Markie, Joanna, Renée, Danny and and and) soon. Sarah and Paul we will see very soon.
Miss you all much.

Thank you for visiting.

The S’s

Wednesday, April 13, 2005 07:41 PM

Hi Friends!

Yesterday I have spoken with Anna (my sister-in-law). She is a teacher. One of her colleagues and dear friends, who has small 3.5 years old daughter, has called and told her they are in hospital to do some testing on her daughter Ada. She has fever, leg pains and doesn’t want to walk on her own, they have to carry her all around!!! First what I thought - Oh God not another child!!!
You can imagine what a shock it was for all us. We both were crying. You can imagine what was going through my head. I was sleeping badly the whole night. I know there are million possibilities what this could be, but the bad feeling was there. Ronnie had the same symptoms and we were praying for little Cinderella (which she really is). We were praying for her to have some bug or something like that. How absurd. I’m praying for a child to be sick!!! I hope you understand.

This afternoon I have got a call from Anna. Ada has a very bad virus. It is not meningococcus, but something like this. It affects muscles and kidneys. She is not in hospital, but she has to rest and can’t do anything. She is on strong medication. She is in a lot of pain by any movement. There is possibility she won’t be able to walk again.
We are praying for her recovery and hope she will be jumping around soon and be little Cinderella again.

Ronnie is doing very well. His counts are still rising. He eats better everyday.
Temi has to work much after being only in hospital last weeks. Many appointments were postponed. We are with Ronnie a lot home alone now and he is boring. He needs to go out and have some fun with other kids. But it is still risk now.

Thank you for visiting.

Nina and Ronnie

Sunday, April 10, 2005 04:14 PM

Hello Friends!

We have great news for you:

WE ARE HOME!!! WE ARE HOME!!! WE ARE HOME!!!

We were discharged on Friday around 4 p.m. We were packed in seconds.
Nobody is happier about that than Ronnie. He is so happy I can not explain. He prefers to go with dad in car (Mom is driving too slowly!!! To explain - I stick the rules and that’s tooooo slow for them. Have you ever seen Dodge Viper with baby seat in there? No??? It was Ronnie’s first ride in his life. When he was born and we took him home from hospital, his crazy dad went with him on a ride in Dodge Viper through LA! He told me the baby has to get feeling for the cars and motors from the beginning!).
So this time again he went with his dad (not in Viper!), I slowly behind them. Temi told me he was singing the whole way home – he is going home.
It was so wonderful feeling to see his eyes shining. First he went to his playroom, than to his bedroom and started to jump on his bed. He has only missed his Golden Retriever “Pocket”. Pocket is camping at my parents for some days. As soon as Ronnie’s counts are stable and high enough the dog will come back. We all miss him.
Ronnie started to eat better. He wanted fillet steak and French fries for dinner. Fortunately we had piece of fillet in freezer and the men got their food. Ronnie ate a half of it and some fries.

The morning was beautiful. He came to us in the bed early in the morning and we slept than for 2 long hours together.
He had almost normal breakfast. Not so normal – the strawberry marmalade boy – does not eat any marmalade more!!!!!! Who knows Ronnie this was his absolute favorite dish - bread with strawberry marmalade. Anytime by any occasion the boy had always strawberry marmalade on his cheeks. He told us he got enough of it into his belly in hospital and won’t eat it anymore. He didn’t forget it. And if that would be the only side effect from his transplant – we take it and are happy.

Now we are enjoying the weekend together and playing games, watching movies, doing puzzles, running through the house and waiting for the first visitors.
We just love it to be together in own house again.

Nurse was here today to take his blood. Tomorrow we are going to clinic.

Thank you for visiting. We love you all. Please pray for all sick kids who are not feeling well and going through difficult time. Pray for cure for cancer.
Thanks.

Nina, Temi and Ronnie S’s

Note from Ronnie to his uncle Paavo: “I’ll always beat you!!! Expect complete humiliation and be prepared for the worst!!!“

Wednesday, April 6, 2005 09:01 PM

Hi Friends!

We are fine. Counts are OK. Still rising, but today went a little bit down. Ronnie had to get platelets again yesterday evening.
He is boring here. His energy is almost back and he is looking forward to go home. And we as well. Yesterday he was able to leave his room for the first time (with mask – which he hates). He went to walk a bit with his dad and than to playroom and was very happy about that. He is eating little better now, but it is still not enough.
The house is ready for his arrival. Maybe in a week we could be released. He is still up now, sitting on my lap and we are "surfing" together in web and visiting our "caringbridge friends". He wants to say HELLO to you all and THANKS for visiting and signing his guestbook. He loves to read about you. We have evening here but wish you all over the world a nice day.

Love you.

Ronnie, Nina and Temi

Saturday, April 2, 2005 06:21 PM

Hi Everybody!

How are you doing? We are fine. The day 12 is almost done.

The counts are rising! WBC was 1.3 this morning and we have ANC 126!!!! Ronnie got platelets Thursday night. And it seems that the GCSF injections are helping. Now the biggest concern is to keep the counts rising and get him to eat. He is eating a bit – pudding or small chocolate bar – but no “real” food.

Today they have his weight checked. And the boy weights only 33 pounds, which is 4 pounds less than before transplant. He is still on the IV nutrition, but it can not really stop loosing weight.
He is little scared now. The doctors told us he will get NG (Nasal Gastric Tube), if he won’t start to eat soon. And he hates it. Some months ago he has got one. It was the worst think in his treatment for him. He was screaming and used the first opportunity when we turned away and pulled it out. He has got second one immediately and it was out even quicker as the first one and the third one as well!!! That all happened in one day. The doctors gave up and we had to come next day for another. He promised them he will start to eat. And he did. In the evening at home he was really eating (not so much as normal, but he did). He is just unbelievable.

With the physical therapy it’s a lot better now too. He is very cooperative and doing well. For the therapists it is no challenge more. He is even smiling when they enter his room and loves all they do together.
But he still looks like a “ghost”. We hope he will get hungry after doing so many exercises and find the right way to recovery.
His spirits are up again. Sometimes you can hear his smile down the halls, which is sound to out ears. He is having a lot of fun with the nurses and therapists. The grandparents, uncles and aunties are doing a lot of crazy things with him too. Me and Temi don’t have so much power for that more. We are 3 weeks here and it’s very hard right now. I really admire all the bone marrow transplanted patients and their families. How do they go through all of that about BMT and the side effects (GHVD etc.) and stay for months in hospital. Great job.

On Friday Ronnie said for the first time he wants go home. But his counts have to get a little better and than we are only waiting for the words: “I want steak… or pasta… or pizza!” It doesn’t matter what. And he knows it. Eating is very important step to be discharged from hospital. Needless to say he hates the hospital food. But we are not worry – only one word and both grannies are with some favorite homemade food here.

“So little man GET STUCK IN!!! Daddy and mommy don’t want to have a ghost-son anymore! And daddy is going to Austria in May and wants us to come with him. You have to be strong.”

They are in his bed together now, watching rerun (they have watched it live too) of Formula 1 Qualifying for the Grand Prix of Bahrain on TV and are talking about cars and all the things they will do at home in the garage. I know he is boring here, but he do it. Life is not easy and my dad says: “The obstacles are here to be overpowered.”

The spring is slowly coming to us – for me too slow – but the sun is shining every day more and more. But it’s still cold here and the snow doesn’t want to go away. Actually I love winter and snow, but too much is too much. We are no more accustomed to loooooooooooong winters.

On Monday I will probably start to make our house ready for Ronnie’s arrival. It must be cleansed from all bacteria (If you think we have dirt at home, it’s not so and who knows us knows how does it looks like by us. But we don’t want to take a any risk. And we have a big dog with possible bacteria in his long hair, muzzle and on his pads. And if he is running through the house they could be everywhere. For the first days we will give him Temi’s parents.).

Today is daddy-night again. So after bath I have to go home. I will try to turn off the TV now to get some hugs and kisses from them. And very likely I will be asked to turn it on again and leave the room!!! But it’s worth a try.

I want to thank you for visiting and reading all the …… I wrote. Love you all. Please sign our guestbook. Take care. LIVESTRONG. And have a nice Sunday.

Love Nina

Thursday, March 31, 2005 07:11 PM

Hi everybody!!!

Today is day 10 and everything seems to be OK.

Ronnie is doing better then the few days before. His counts are still very low, but great news - his white blood cells are at 0.5 today from 0.1-0.2 in last three days. That’s great!!! And he has a little bit more energy too. Yesterday he was playing a lot with his granddad and today with his dad too, but is still all the time in his bed. The therapists try to do with him some exercises, but he is not really interested. He is very weak, has no muscles, has big dark circles under his eyes and looks anemic – simple said – he looks like a cancer child. I hate it see him like that, but we hope in next few days he will start to eat (he didn’t eat anything in last two weeks), today he drank some vanilla milk. His mouth sores might be better, but we don’t know because he won’t open his mouth if you ask him to.

But this afternoon his eyes were shining again. He got very special visit. One of Temi’s very good friends, who was diagnosed with cancer some years back, came to us. Since three years he is off treatment and doing very well. He with his family was a big support for all of us since the first day of Ronnie’s diagnosis. He lives 100 miles far from us, which is great (last year was living in Canada!), so we can stay in contact. He is a very special man and his family as well. They have helped us to understand a lot of thinks about life and the reason of being here.
Ronnie loves him, his wife and kids so much. Today he was here in our town and visited Ronnie. He brought a lot of toys and games for Ronnie and for the other kids here on unit. The playroom is full now! He is a man with a big heart. He donates big amounts of money every year for cancer research and supports children hospital in his home town. (Maybe I could say Temi is a member of a foundation supporting the children hospital here for many years. We have visited this hospital and the little patients so many times – and now?! We are here again on the other side. I have never thought anything like this could happen to our family.)
I think he has motivated Ronnie little bit (maybe he will try to do some exercises tomorrow). He spent two hours with us. And we want to thank you so much uncle S. for being here for us all and you never ending support. We love you all. Thank you for being so kind to everyone.

Thank you for visiting. Bath tub is waiting.
Take care.

Nina

Thursday, March 30, 2005 8:33 PM

Hello friends!

I have to say we are doing well. It is not the best, but it’s OK.
On Tuesday, after me and my parents took Jason, Jane and Jackson to the airport, I went to our doctor. He has done some test etc. and on Wednesday he told me, that I’m absolutely healthy and can go back to Ronnie in hospital. It was big relief for all of us. First I can hold my little mouse in my arms again, second Temi get his break form hospital. I have missed them both so much. But Ronnie had good time with his daddy and grannies.
On Tuesday his counts were very low and his spirits as well.
Today his counts are still low, but I have got some smiles after my arrival in hospital. I was holding him maybe for an hour as was asleep and have looked at him all the time. It was so beautiful feeling to have him back at my side. How I love this little boy.
Temi wasn’t here the whole day. He had so much to do after many days here and needs some fresh air too. But my dad has spent some hours here with us.

He is watching some movie now and wants him mommy by his side. So I have to go it’s cuddle time here!

Nina

Monday, March 28, 2005 05:02 PM

Hello Everyone!

Good news. Ronnie’s transplant went well. The procedure began around 1 pm on Monday. There were so many family members, it was great to feel their support. I would like to thank them all to be patient and supportive. Only me and Temi were allowed to stay in Ronnie’s room during transplant. There were two doctors and three nurses. They have done all they could.
When they came in with Ronnie’s Stem Cell, he looked firs at the syringe and than at his dad and said to him: “I don’t want to eat any marmalade.”
All have laughed and the doctor explained him, he will get this marmalade straight in his tummy. And he was happy about that and thought it’s very funny.
It took only 15 minutes to get his cells back. The Dr’s say it takes only few minutes and they will find their way.
Ronnie’s blood pressure jumped very high during this. It’s common during transplant and it was expected. He got some medicine to reduce it and all went fine. He fell asleep during this. He had a low grade fever too. We were told he will smell funny for 2 days after transplant and he did. I don’t know how o describe it, it like sweet corn or something like that.

On Tuesday his counts were low, but not at 0. He was doing well. He played for few hours and watched movie and after bath he fell asleep soon. The night was OK too.

On Wednesday I woke up early in the morning and wasn’t feeling well. I have to throw up. I know no one with any symptoms of sickness is allowed on the transplant unit. Ronnie was still sleeping. I went to the nurse, told her what matter with me and went off the hospital. I have called Temi, he should come to take care of Ronnie. He was sleeping at the time, but said in few minutes he will be out of the house. I have waited for him on the parking lot. He came really in 30 minutes. Our house is 20 minutes far from hospital. We have talked some minutes. I didn’t want to kiss him. We couldn’t get sick both. At least one of us has to be 100K for our baby.
At home it is terrible. My son isn’t doing well, he is very sick and I can not be with him. On the other side he has the best dad in the world. Temi is so good with Ronnie in the worst situations. He is calm and strong. Sometimes I lose my head, but he always knows what to do. He calls me maybe every hour to give me info what going on and sends me a lot of MMS with pictures of Ronnie. Right now I have got one. Ronnie is sleeping and looks like an angel. I’m so sorry for him. How many time I have asked myself and God why him? Why not me? Why he has to go through this as a small boy? I would die for him, if he could be healthy again. He has the whole life for him. He has to have fun, joy, to get married and get children… I believe in miracle. Temi doesn’t. He believes in deeds and strength.
In the night Ronnie was throwing up blood and mucous. His platelets were too low. He had to get platelets transfusion.

Thursday wasn’t any better. He was still throwing up and got nose bleeding. I’m so sorry for him. I’m so sorry that I can not be with him. I hate it here alone in this house. I’m scared. Not to be here alone, but I’m scared what could happen there. My mom was with them in hospital. I hope she could help him a bit. She is the best mother I know and grandma as well. I think they are really good team together.

She stayed with Ronnie the whole day and me and Temi went to Emma’s funeral in the afternoon. On one side it was sooooo sad and on the other side it was so sweet. I thought I would cry my eyes out. Emma’s uncle made the speech and it was so nice. He was reading a poem written for Emma by his 15 years old daughter. I think no adult could write it better. They all are such a beautiful family. I’m praying for them everyday.
I’m still feeling sick especially in the morning. Maybe it’s the stress. On the way home Temi had to stop twice, because I was feel pretty bad.
My mom stayed whole night with Ronnie. Which was good for me and Temi. We could be together outside the hospital for one night. We had nice dinner in the city (I was feeling better) and than we went home to own bed.

The whole weekend he was about the same. Ronnie’s counts are still dropping. He got some platelets again. And the mouth sores look bad. But he’s sleeping almost the time. He had a lot of visitors, but nobody could see him, because his counts. Temi stays with him most of time with his mother. His parent came to visit us for Easter. It’s fine. I’m not alone at home.
Tomorrow I will go to our family doctor. I have to get healthy again soon. I will see my baby again. I miss him much.

I hope you all are doing better. Here it is still very cold. The spring is taking its time. But it doesn’t matter. I hope the nice sunny day will come when Ronnie will be out of the hospital.
Thank you all for your continuing support and prayers. Thank you for your calls, e-mails and notes in the guestbook. We like it to hear from you.
Thank you God for my wonderful son and every single minute with him.

Love you all.

Nina

PS: Cathy from Canada - you have asked about the pictures. These are pictures of our home country in Scandinavia. Thank you. We will post some new soon. I hope you like the photo of baby Ron too.

Saturday, March 19, 2005 18:20 PM

Hi you all!

I know you are waiting for update.
We all are doing good.
Saturday we had a great time with my family. It was so nice to see them all together again. Ronnie and the other kids had a blast. He was really happy and was jumping around full of energy. I just want to thank them all to make this afternoon so special. It means a lot for us to be with you all. Ronnie is still talking about Saturday and the fun time he had.

On Sunday everything went well. At 2.00 pm we were admitted to Transplant Unit. Ronnie’s room is very large and there is a big window, we can see the whole hospital park, the main street and the city. No buildings because the Transplant Unit is on the last floor of the children’s hospital. He spent almost the whole afternoon there on the window, he like it very much. The personal here are great supportive people and are wonderful with children. They helped him to decorate his room with posters, photos of his family, stickers and lights. It looks like Christmas there. He loves his decorations and is very proud of them.

Ronnie has decided that dad shall stay with him for the first night. One hour later I was leaving and he started to scream and wanted me to stay and than both of us. We have tried to explain him (we did it many many times at home too) that it is not possible to stay both of us. He cried so much that he felt asleep in my arms in few minutes. Temi left the hospital. It was better so, because he had to work early in the morning on Monday and it was better for him to sleep at home.

Monday started the chemo. Ronnie did very well, was full of energy and went to playroom and stayed there for two hours.
Temi came at 2 pm. Jason with Jane and Jack a little bit later. Ronnie had a great time with his cousin.
Temi said to him later, he will stay with him this night and said only OK. I had to leave the unit until 8 pm. He gave some kisses and hugs and said see you tomorrow. He didn’t cry!!!
But I had tears in my eyes when I saw him behind the window, they both sent me kisses and smiled. I have cried the whole time on the way home. It was horrible at home alone for me. Our dog wasn’t there too, we gave him to my parents for the transplant time, because nobody will be at home. I took a shower and have tried to watch TV but I felt so lonely. Just few minutes later I went off to my parents. Their house is far from hospital, but it didn’t matter. When Ron is in hospital I can’t sleep well, so it is no problem for me to get up one hour earlier. On the way there Ronnie and Temi called me on my cell, just to tell - me they are lying in the bed together and cuddling and wish me good night. I have almost cried again.
It was a right decision to go there to my parents. We had talked almost whole night (Jason, Jane, Jack sleep there) and the time was flying. On the next morning very early I got up and went back to hospital. Ronnie was sleeping. Temi told me he had vomited at night. Five times or so. They have straight changed his anti-nausea medication and it seemed to be OK. Chemo doesn’t make him sick much. But this time it is a very strong and we have expected that. He woke up at 9 am and wasn’t feeling well, but didn’t vomit. He was sleeping much the whole day and eating only little. Temi’s parents came and spent the afternoon with us. Around 6 pm Ronnie started to throw up again and was very irritable. But was in no pain. This night I have stayed with him, Temi went with his parents to our house.
The night wasn’t better. He felt very sick and run low grade fever. He could sleep only for 20 minutes and was up again and felt very uncomfortable. It took an hour to calm him down and get him to sleep again but in 20 minutes he was up again.
In the morning started to complain about mouth sores. He refused to eat, but was drinking from time to time a bit of water. He really hates the mouth wash. Some friends have stopped by today, but Ronnie wasn’t in good spirits. The mouth sores became worse at day. For the night he got morphine to help him rest and it seems to help. But I knew it is only beginning. It will be worse.
Thursday was he the same whole day. His counts were very low. He couldn’t leave the room since this morning, even with mask. He was very tired. And it was real challenge to get him in bathroom. He was sleeping almost the whole day. I went home for few hours to get a long shower and than I went to hairdresser. I don’t like it, when my hair is not done. Temi stayed with him the whole day. When I came back, he was still sleeping and did the whole afternoon. He was few times up for some minutes. I hate it to see him so. Temi stayed for the night too. I went back to my parents, but couldn’t sleep well.
On Friday when I came in hospital, Ronnie was up, was doing a little bit better, drunk apple juice and the chemo was over!!!!!!!!!!! And he smile little. He was doing a puzzle with us for 15 minutes and than he got tired and went to bed again. His mouth sores are very bad now. He don‘t like to open his mouth, but what I have got to see was terrible. He is on morphine since Wednesday. And I hope it helps. Chemo is over, so it will be OK soon again.

I’m home now. Everything is so still here. I’m thinking about Emma, our little friend. She left us yesterday around 8 pm. I’m so sad for her, her family and friends. She was only 5 years old. Life is so unfair. She was the sweetest little girl I have ever met. Her parents became very good friends of us. She has two brothers, they will miss her much as well. I’m so sorry for them all. I can not imagine the pain they are going through. Please take a minute and pray for them. She will be very missed. Ronnie doesn’t know it now and we don’t know how to tell him. It will break his heart.

I want to thank you all for your words of encouragement. Thank you for your calls, e-mails and notes. It gives us a power to fight. Thank you. We love you.
Take care.

Nina

Saturday, March 12, 2005 10:58 PM

Hello Everyone!

We all are doing very well. Yesterday we had a very important appointment with the Doctor and transplant team. Ronnie’s results are looking great. Nothing was found on his scans. His bone marrow is clean. And that means he is still NED and that’s wonderful. His urine is OK too and all blood counts are in normal ranch. His physical examination went good too. He is healthy and strong boy. He gained 3 pounds since his surgery. He weights now 37 pounds (it’s still not much) and has grown 1 inch!!!! That makes 40 inches now. Not bad, but he is still very skinny.
So our plan hasn’t changed. Tomorrow he will be admitted to hospital and on Monday starts chemotherapy. We are very optimistic after the excellent results!
He still didn’t tell us who from us two should stay with him in hospital the first night. So I have to pack a lot for all of us - maybe no one of us. Who knows who will be his favorite person tomorrow?! Granddad? Nana? Aunt? Uncle? Who knows.

My brother Jason, Jane and Jackson have arrived safely Thursday night. Now we go to my parent’s house. We have a very big family reunion. There will be about 30 people!!! My grandparents, parents, aunts, uncles, cousins and their children. My parents have big and solidly built house so I don’t worry.

I’m sitting here on an armchair writing this journal and my two men are napping on the couch next to me. They have eaten two whole big bars of chocolate and Temi still holds a piece of it in his fingers. It stated to melt. I think our snow-white couch gets a new design. I don’t excite about. It’s only couch. Last year before Ron’s diagnosis I would probably flip out. I wouldn’t let them eat anything in living room. Today I’m calm and know such little things really don’t matter. Couch is nothing that couldn’t be substituted. They look so cute with their chocolate mouths.

I hope all have a relaxed weekend.
Thank you for all your prayers. Keep your fingers crossed. We will do our best.

Please pray for all little warriors who fight against all nasty diseases not only cancer (Anemia, MPS, SMA, many disorder and syndromes, kids who need organ transplants and and and). They all are so brave and special. Please pray for better future and healing for them. There are so many beautiful people who care. Thank you and God bless you.

Nina

Wednesday, March 9, 2005 10:38 AM

Hello Friends!

I’m happy! This morning very early I’ve got call form my brother Jason and they come tomorrow night to us. We haven’t seen them since Christmas and miss them all much. He lives in USA with his wife Jane and son Jackson and since we are back in Europe we can’t see us so often.
Ronnie is happy too. They are with Jackson like brothers. Jack is only five months elder. And Jane?
She used to be my best friend as we lived in Los Angels. And I hope she is still my best friend! I miss her much too.
They will stay to Easter. So it will be lucky and funny weekend before transplant on Monday. They will be support for us. The days in hospital are always long and is great to have some visitors everyday.

After doctor appointment today we will do some shopping. We will buy some new toys, games and movies for Ronnie and his little friends in hospital to make them the hospital stay little easier. That will be hard weeks for us and especially for him and the other children too. So on Sunday we will have very full car.
Ronnie will have „only“ Stem Cell Transplant, other children go through Bone Marrow Transplant. It’s more difficult and harder. They are so brave.
Now we are thinking about Antibody Treatment. We are unsure what to do. Should we let Ronnie go through this or not. It’s very difficult decision.
The Dr’s told us in his case is not necessary to do Radiation. He had excellent outcome to chemo (his main tumor shrunk 80 percent after few rounds, other tumors were gone) and his tumor was all taken out. Since his OP in February he is NED. We will probably don’t do this. Maybe later. We have his scans sent to 5 hospitals in Europe and USA and no we are waiting for their answers and opinions. We will the best therapy for our son without later effects.
If you are or were in the same situation let us know what you are thinking about. It’s not easy for us. And every stance is welcomed. Feel free and e-mail us or write in the guestbook. Thanks.

We will go to McDonalds and than to out dental and physical examination. Nothing bad today.

Have a nice day you all. And as the wonderful man Lance Armstrong says: LIVE STRONG

Nina

Tuesday, March 8, 2005 16:39 AM

Hi Everyone!

Not so much to report today. It will be short.
Ronnie had MIBG Scan and Bone Marrow Aspiration. He did fine. Now he has pains in his legs and hips, but it will be OK too. He is napping right now. The technician told us “unofficial” his scans look good. Small relief but it’s still unofficial! We will see what the Dr’s say. The final evaluation will be on Friday at 09:30 a.m. I’m not scared little nervous, but not scared. Everything will be alright, God has a plan for our little boy.
Temi is not home now he has to work a little bit today, but in hospital was with us.
Tonight we will go to our friends to dinner. They have children too and can have fun together. I like it to see Ron with other kids having fun.

I hope you all are having so wonderful time as we do. In the cancer world is everything changing within minutes and that’s why we have to be happy to have so special days. And can say we are happy. We have each other and wonderful supporting family and friends.

Please pray for our friends especially for Emma. She isn’t doing well. Pray for a miracle for her and for her beautiful family to have enough strength in this difficult time.

Ronnie is calling me. I think he will fool around.
I wish you a nice day.

Nina

Monday, March 7, 2005 15:09 AM

Hello everyone!

I was really surprised on Thursday when I saw Temi wrote a journal entry. He didn’t tell me anything about it. In the evening I wanted to write few words and saw, that he was here and wrote this lovely entry.
Of course he didn’t forget to put his favorite cartoon character on this page.

We are doing great.
We had a beautiful weekend. On Friday in the morning we and Temi’s brothers with families left the city and took an one hour flight to a small holiday resort to take a part on “Snow Fest”. The weather was great and the nature just wonderful. We met Temi’s parents there and have spent the weekend together.
It was a great ski-trip. There was a lot of snow and we had so much fun there. For the kids was program with games the whole day. And there were no questions “Why don’t you have any hair?” We both Temi and I have no problems to say our child is beating cancer and that’s why he has no hair. But sometimes it gets on someone’s nerves to answer the same question 100 times a day. That’s why I like the cap-season now. Anyway you don’t need to fear to ask me, Temi or Ronnie why he has no hair.

I have to say the last two weeks were the most wonderful since Ronnie’s diagnosis. We didn’t have go to hospital or clinic so much and could be a normal family again.
Last year I began to learn Ronnie skiing. And he didn’t like it much. I think he was too small for that. This year I was a little bit scared he will hate it, if we force him to do that.
On Thursday we went to buy he new ski and he was very interested. He liked to ski from the first minute. I’m happy about that because I love to ski! And he was very good! Sometimes I really scared because he was so fast with his cousins, but nothing happened. In the evening he was very tired and went to bed without dinner.
Next day he was up at 6:30 and said:
“Mom, dad you have to wake up! I’m hungry and we have to go out!”
The “cancer parents” know what it means, when your “cancer child” says: “I’m hungry!” You are in one second awake. It was still dark outside (we live in far far north!) und he wanted to go out (maybe to enjoy the freedom before we go to hospital for many weeks).
Your ill child alone says - he is hungry and you can not give him anything to eat.
It was a challenge to explain him that we can get our breakfast first at 7 o’clock. But he is a good boy and was so patient and could wait.
Yesterday we have watched Formula 1 on TV, which is duty in our family! After the years with Temi I have to say I like it too. Can you imagine that I woke up at 5 a.m. to watch auto racing? The men were disappointed about the results (me too), but hadn’t too much time, because we had to leave in two hours. All the time on airport and in aircraft they were discussing about it. Maybe I have to say that he is an absolute car-freak and his twin brother as well.

Today we had two very important scans. First Bone Scan and then CT Scan. We have no results now. We will get final report from the whole week on Friday. Afternoon Ronnie had a hearing test done and everything looks great. He has no hearing lost from his chemo. We were a little bit surprised because we have expected a minimal lost. So we are very happy an optimistic. This week will be very expensive for us. On the beginning of this journey we have said every scan or anything else under anesthesia - one new toy. And this week we have 3 scans, bone marrow aspiration and many other examinations. But it doesn’t matter.

Please pray for our friends:

Yemi – Ronnie’s buddy - a little boy with neuroblastoma, who came with his mom from Africa to get his treatment here. We are through this together almost from the beginning. They became our very good friends and I really missed them last week.

Emma – wonderful little lady with ALL (leukemia). She is now not doing well. She needs some prayers. (I think Ronnie is in love with her!)

Mika, Anna, Teri, Jessi, Ben, Tuomas…. and many many other. In internet I have “met” so many kids with horrible illnesses. Please to pray to found a treatment. They are small innocent children. I hate cancer!

Please donate blood or platelets. There are so many people who need transfusions everyday. It doesn’t matter where you are from.
Or do anything else to support people in need. There is so much that could be done. Who knows, if you won’t need a helping hand tomorrow.

Please sing the guestbook, if you were here. It doesn’t matter if you write only “Al Bundy was here” or something like that. We just like to read who has stopped by.
Tomorrow is the big MIBG Scan and Bone Marrow Aspiration.

Take care and God bless you.

Nina

Thursday, March 3, 2005 8:00 AM

Huomen-ta! Hi everybody!
Today is Tem writing. Nina and Ronnie are still sleeping.
First I want to say we had another nice day together yesterday. Ronnie was full of energy and happy.
Somehow I like it to be at home with my family and not to go to work everyday and stay every second week out of the city and every time in other state all over USA.
Now it’s much easier and I can only say “Thank You” to you the big bosses, who didn’t sign our contract. The timing was perfect. It’s good that is doesn’t come last year. And next season we will be ready to go back to USA. I know Ronnie will be 100n August again. He is the strongest guy I know. I wouldn’t handle it so well as he does. He doesn’t complain and has always smile on his face. He has learnt us so much. We as parents should learn him and we did (or try) it. But what he has leant from us?! How to brush his teethes? How to walk? How to sing or dance? Do you mean the kids wouldn’t learn this without us? Of course they would. We learn them the simple things. But they show us how to be a better man, how to strong and what really matter in our life.
Last night, when I put him in the bath tub, I looked at him and thought how happy I am. He was so lucky to have his ships and other toys and didn’t complain about the water lever in tub (maybe inch or two). He had opened my eyes again. The simplest things are the most important.
I remember last summer we were together outside in the woods and came to a beautiful meadow full of flowers. He looked at them and said: “It’s a pity, that mom is not here to see the flowers.”
And I foolish big man answered: “Come, we pick some for her.”
He didn’t look at me and said: “No dad it wouldn’t be the same. They are beautiful here.”
I hadn’t any answer. He was right. Such a simple thing. Next day he took his mommy to show her the beauty.
I love you my son. You are my biggest inspiration, sense of my life, my best friend. I know your life isn’t easy. I and your mommy do everything to protect you and help you on your journey. We will be always here for you and we will never give up.
I know you don’t like to stay in hospital, you don’t like chemo and maybe you hate us for that, but I hope one day you will understand. Everything we do we do it for you.
Nina - my love - thank you for everything. You are great mommy to Ronnie and wife to me. I love you.

Sorry if my entry was too boring.
Now I go to make a breakfast. We need to be strong today. We have a lot of work for us. We will make a gigantic snowman.
Have a nice day!

Tem

Tuesday, March 1, 2005 11:45 AM

Hallo friends!
We are doing very well today again. Here a beautiful weather. It’s cold outside (right now -15 oC), but the sun is shining. The boys left the house and went to clinic to get Ronnie’s blood counts checked. I just get a call from them – everything is OK and is seems that we can start all preparations as planed.
Yesterday we have got our plan for the next 2 weeks.

Monday March 7
08:00 Bone Scan
11:00 CT Scan

Tuesday March 8
09:00 MIBG Scan
12:00 Bone Marrow Aspiration

Wednesday March 9
Dental and Physical Examination

Thursday March 10
24 hours Urine Test

Friday March 11
Final results from all tests and evolution

If everything is OK, Sunday afternoon we will be admitted to the transplant unit. Here is only one parent allowed. We will see how we can manage that.

Monday March 14, 2005 starts this awful 96 hours chemo, that will almost kill our baby.

On Friday to Sunday he will get days of rest.

And Monday March 21, 2005 is the big day. Ronnie will get his Stem Cell back.

They went skating now and do some of the son-dad staff.
I’m here alone and can’t wait to see them again. Our dog „Pocket“ went with them too. I miss them. I know the nights that Temi will be with Ronnie in hospital will be terrible for me. To be alone at home…

Now we enjoy the last few days before transplant.
I love it in the morning when he comes to our bedroom. First I feel his little hands and feets under our blanket, than he his had by mine and his botty in my lap. The last thing he will is hug from dad, so Temi holds us tight and sometimes we fall asleep so together. Isn’t it a perfect start in new day?

Afternoon will come Temi’s brothers and their families. Our house will be full of laugh and fun again. Six adults and six kids!
So I have to do something. Have a nice day. Be strong.

Nina

Monday, February 28, 2005 7:22 AM

Hi friends!

We all are doing very well. Ronnie takes a nap now. So I have little time to continue:

We were sent home and had to come next morning for more tests. We were so scared to be home alone with so sick boy, but we knew that is maybe our last night at home together for a long time. That night for the first time I saw my husband cry.
Next day our parents came in to support us.
Bone scan was done. Than he went to surgery. His tumor was biopsed, port was put in and bone marrow tap was done. To have the family with us was very supportive.
The surgery took 2 hours. He didn’t have any complications and we stayed 3 days at hospital.
Bone scan showed tumor in his abdomen and both knees. His bone marrow was involved too - 60% cancerous in his left hip and 30% in right hip. Not so good. Tumor biopsy confirmed neuroblastoma, but with favorable Shimada histology and non-amplified N-MYC gene. Which is good. But his prognosis is not so good. 40% to survive next 5 years. We were devastated. Temi has done some internet research and we knew that the prognosis is so bad, but we believed we will get some better news. I looked in my son’s eyes and couldn’t accept that we let him die. The first day Temi said we will do everything what we can to save our baby. No matter what it cost. If we need we will sell our house, his beloved classic cars…
In the morning was MIBG scan performed. It showed some new areas: his initial tumor – Para spinal mass near his spine, knees, 3 little spots on ribs and 1 on left shoulder.
Next day he started his first 72 hours chemo. It doesn’t make he sick, which we have expected. He was only a bit more tired but OK. He was happy to have a lot of visitors. He just did his puzzles and didn’t care the tubies.
After chemo he got his hair cut. I have cried again when I saw his beautiful blond hair on the floor. The same evening Temi came home with bald head and said as long as Ronnie has no hair he will have bald head too. Ronnie liked his dad without hair and think it was much easier for him when his hair fell out.

After third round of chemo his bone marrow was cancer free!!!! His stem cell harvest could be done.
He have had 3 blood and 5 platelets transfusions during 6 cycles of chemotherapy. (Mostly from his father, they have the same blood group. We were said if Ronnie will need maybe in future a bone marrow transplant his father is a perfect match for him. That is not usual. I know that he has nothing from me. He looks and is like his father. I’m very proud of them. I love you boys – you know you are my everything.)

Surgery to remove his abdomen tumor was performed February 2nd. It took only 3 hours. The surgeon (a great man – thank you Dr. K.!) came to us after surgery with a beam on his face and let us know that Ronnie’s Para spinal mass wasn’t touching his spine and it was really easy to perform the whole surgery. We were happy.
After surgery Ronnie had some complications. Two days after it he ran high fever. He couldn’t breath and was so hot. That night I was alone with him in hospital, Temi had to work. The Dr’s found out he has infection in his belly. I have called Temi and he came immediately (Thank you. You are the best dad and husband I can wish). We thought we will lose him. But antibiotics did they job and next day he was doing better.

Now he recovers from his surgery and infection. His stem cell transplant his March 14.
Next week we will have a lot of test done to be ready for transplant.

Have a nice day.
Nina

PS:
Ronnie – my sweet baby. You are so brave boy. Mommy is sooooooooo proud of you. I love you!
Temi – you know you are the best man I know. I love you! Thank you for everything you are doing for us.
Jay + Jane + Jack – We love. Ronnie misses Jack and us too. Thank you Jay for listening last night. I really miss you my big brother.
Mom and Dad – Thank you for coming. It was nice to be with you again. We love you.

Friday, February 25, 2005 08:21 AM

Hi Friends!

First I would like to tell you we don’t come from America, we are from Europe. That why my English is not so good. Sorry for many many many mistakes in my writing.
For Ronnie’s security we can‘t write any names of persons, places, countries etc. We want to protect his privacy and that could be normal child as much as possible. His dad is known man. That’s why we are doing this. I hope you understand.

Here is Ronnie’s story:
Aaron S. was born on December 24, 2000. He came 3 weeks premature, but was healthy. We as parents thought he the most beautiful baby. From the first second we were in love. I’ve never thought that I could love someone so much.
He was a Christmas surprise gift not only for us, but for the whole family.
He was just perfect. We were so proud. He slept through night since his 4th week. Didn’t cry much and was very happy baby.
To his 3,5 years he wasn’t really ill.
Last summer we went for holidays form USA to Europe. After arrival Ronnie was tired, didn’t speak. We thought he just tired from the flight, the time lad and maybe shy, because he didn’t saw his grandparents since Christmas. He slept in car on the way to Temi’s parent’s house. The next few days he wasn’t all himself too. He slept for 15 hour.
Than in next days he was full of energy again. Enjoyed the days with his granddad, granny and cousins. They went to fish, swim and all the thinks the boys and girls do in summer. Evenings he was always tired and had leg and back pains, but all of us did. We didn’t think too much about that.
We have to stay in Europe. My husband’s job was broken off for some time and we didn’t know when we can go back. We had to buy or rent a house in the town and Temi had to get a job. Really quick we have got both.
Next days Ronnie ran low grade fever and refused to walk. He stayed on couch all day long and watched TV or slept.
No change next to days. We have decided to go to pediatrician.
We had to carry him to and from the car.
He was sent home with flu diagnosis and growth pains. Next two days he didn’t get any better. He still didn’t walk and had pains. The last night he had fever. We were scared. At 4 a.m. we have dicided to go to ER.
His blood counts were little bit low. They did another test. But found nothing wrong. No virus, no bug. We were said we should go home try to get his fever down and come next morning to see neurologist.
So we did. In the morning he had no fever but was still irritated.
We went to our appointment. The Dr. didn’t exam him to long and said he want to have MRI done. He couldn’t eat or drink for 6 hours. He got IV in his tiny hand, but didn’t cry. He was so brave and we were so proud of him. But I could cry the whole time. I was so scared. The sleepy medicine worked well, he slept in few minutes. It was really terrible for us to see our baby like this.
They have put him in the cold room with this big machine. We looked at him through the glass and I cried the whole time. It took about 40 minutes. He couldn’t wake up. I was holding him and he was like a doll, he couldn’t hold his head.
Maybe one hour later came 4 Dr’s to our room. One of them said:
“We are very sorry, but we have found a mass in your son’s belly... Most likely neuroblastoma – childhood cancer.”
Since this moment our lives have changed and we knew nothing will be like before. We were in shock. I thougt it can not be not my son, children do not have cancer. I have cried and cried. My husband was in the first moment calm. Asked a lot of questions, but I couldn’t listen to them.

I will continue in next days.

Ronnie has another good day. Grandma and Papa came last night and will stay whole weekend.

Nina

Wednesday, February 23, 2005 8:02 AM

Hi our old and new friends!

I'm Aaron's mom Nina.
We would like to keep you updated about “Ronnie” and his progress.
Today he is feeling well. No temperatures, no pain. He enjoys a beautiful sunny day outside playing with his father (Temi).
In next days I'll will write his story about his illness and fight with neuroblastoma.
Love you all.

Nina

Friday, April 29, 2005 6:57 AM CDT

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