* NOTE: These entries are in a reverse chronological order for those that just want to read the most recent updates!
June 14-2011

Today marks a special day! Niko no longer has his MicKey (feeding tube). Well, he didn't really need it anymore but we were still using it to give him his special therapeutic from ISM. As he was playing today, it fell out. By the time I got to him to re-insert it, the hole had closed a little too much. I rushed him to emergency. During the ride to the hospital, discussions where had with many people regarding the MicKey. Needless to say, the decision was not to insert it again. Niko is extremely happy! Now all we need to find are great smoothie recipes that Niko will like so he can continue to take his therapeutic.

Overall, Niko is doing great! He is looking forward to day camp with Matthew, his brother and all the activities they have to offer :-)

Sending you all hugs!

Loving regards
March 22-2011

Hi!

Wow, it has been a full year since Niko's diagnosis. So much has changed. Niko is doing GREAT! Since January, he has started school full-time, is eating well, completed 5 sessions of downhill skiing at Pakenham, and has turned 5 years old.

Niko is scheduled for another MRI in April.

I wish to thank everyone for your ongoing support and prayers.

I would also love to thank the Immune System Management (ISM) company for providing Niko with a custom compound that has shown to help his recovery tremendously. Doctors and nurses at CHEO are amazed and pleased with Niko's development. Niko started to take the ISM compound in August and will continue to take it for at least another 5 months. We are totally blessed to have met the ISM team and we are extremely and forever grateful.

with loving regards,
xoxox
December 3-2010

Hello to all!

November was remarkable for Niko.

The day after the surgery to remove his Broviac, Niko got to take his first shower since February. He did not want to come out of the shower. Every day for 2 weeks, Niko took 15-minute showers.

Niko's hair and eye lashes are dark and beautiful. Check out the pictures :-)

Also, Niko started to eat 2 weeks ago. His first food was Special K cereal. He tries different foods every day. We are very proud of him but most importantly, he is proud of himself.

If you have speakers, please listen to the primary song on Niko's website. Song of Love, a non-profit organization in the States, wrote a song for Niko. It is priceless!

On a personal note, I (Renee) am starting a full-time job on Monday Dec. 6th. I'm looking forward to it!

The Miceli family wishes all of you a wonderful Christmas and a New Year filled with love, happiness, and HEALTH!

Merry Christmas, with love
xoxox
October 19-2010

Good evening!

I cannot believe that it's been over 1 month since our last update.

Niko has been home since September 9th. He had a lumbar puncture, which showed no trace of abnormal cells (hooray!).

Last Thursday, Niko had his picline removed and today he had surgery at CHEO to remove his Broviac (central line).

Niko's eyelashes and hair is starting to grow back.

Niko is doing well walking and his favorite past-time is to help mommy in the kitchen. He makes excellent pumpkin cookies but unfortunately is still not eating.

Thanks again for your support and encouragement!

with loving regards
xoxoxoxo

September 7-2010

Good afternoon!

Niko is doing great. His white blood cell count has sky-rocketed. This is really good!

Last Friday, Niko received his orthotics. He loves them and walks incredibly well with them. They are adorable!

Well, it looks like we are going home tomorrow evening after a couple of tests. Niko is scheduled for an audiogram in the morning and a lumbar puncture (LP) late afternoon. We are excited to get the results from the LP and have the California Oncologist review the results. We should know within the next week (we hope), if a 4th cycle is required or not.

with loving regards,
Renee
 

August 30-2010

Hello to all!

Wow, it has been a busy 20 days. As mentioned before, Niko had visits at CHEO for an audiogram, ECG (heart), GFR (kidney) and an MRI. The results were all very good. The time home felt great but unfortunately during this time, we had to put Dudley, our oldest Golden Retriever down. It was a very hard decision but it was time. ‘Dudley, you are in our thoughts and in our hearts always.’

Niko was readmitted to Sainte-Justine hospital on August 18th for the start of his 3rd Chemo cycle. The Chemo session went pretty well and the stem cell transplant was effortless. Sadly, for the first week, Niko’s Broviac (central line) wasn’t allowing the nurses to draw blood, so poor kid had to have his finger pricked once a day and sometimes even twice in a day. For this reason, Niko underwent a small procedure to install a pick-line in his right arm. Niko is relieved that there is no more finger poking required.

Tony and Matthew returned to Ottawa last Tuesday. Niko and I have had lots of time to play and relax. Daddy came to visit on Saturday, which gave mommy a little break but most importantly, made Niko’s day.

Today was an extremely demanding day for Niko. The day started with a visit at the nuclear medicine department. They injected a contrast material in his little body and then did a ‘circulation’ test on his feet. Two hours later, we returned to the same department to have a total body bone scan. The reason for the bone scan is that Niko has been complaining about heel pain for the last couple of weeks when he attempts to walk. The Doctor has confirmed that Niko has a hairline fracture on his left heel, so he will need to wear a special orthotic to walk for a little while. This orthotic should also help Niko regain his sense of stability, which he lost after the operation. In addition, Niko received a platelet transfusion this afternoon and a blood transfusion this evening. Wow, I think they have taken vitals at least 15 times today. That’s a lot for someone who hates getting their vitals taken!  What a trooper!

On a totally positive note, Niko hardly vomited so far during this cycle and he is keeping his weight steady at 14.1 kg. Hooray!

Many are curious about the second opinion. Yes, we finally received an email from the Californian Oncologist. The Doctor requires a few more tests before providing a final recommendation. The tests will be done when we return home sometime next week. I will definitely provide an update as soon as a decision has been made.

Lastly, thank you to all that are still promoting the sale of the Go Niko Go bracelets. Everyone’s generosity is greatly appreciated and the funds are helping our family tremendously. THANK YOU!

Please keep Niko in your prayers for the perfect healing and recovery. God Bless! 

With love and gratitude,

xoxox
August 10-2010,

Great News!

Niko was discharged today from the hospital. We are heading to Ottawa on Thursday to see family, friends, and visiting CHEO for an MRI scan, as well as a few additional tests.  Niko is looking forward to sleeping in his own bed.

Before we head home, Niko and I will be visiting the St-Joseph Oratory. Niko said that he wants to go buy a rosary and blessed oil for Matthew.

Love you all!
xoxox

August 5-2010,

Hi there!

As I mentioned in my previous entry, Niko started his second cycle on the right-foot. Niko received his chemotherapy drugs in the first 3-days and then received his own stem cells on day five. Niko vomited as predicted by the protocol from day 2 to 5 and then it practically stopped. What a difference from the 1st cycle. Also, Niko didn’t have the same heart rate issues. The heart rate increased but nothing to alarm anyone; not even us. Niko does have a nasty skin infection where the stomach tube is located. He is currently on an antibiotic and gets morphine once in a while when the pain in unbearable. He dealt with a few other hurdles such as nose bleeds and transfusions

We are on day 15 and I need to report that overall things are pretty good. Niko has gained weight this time around. He is at a whopping 14.0 kg (30 lbs)... Bravo!

As for Matthew, he is being well taken care of and is keeping very busy. He has gone camping a few times, has learned to ride his bike on two wheels, and has learned to swim with floaties. Thank you to the Belzile family for taking excellent care of our Matthew and treating him as one of your own :-)

Please be informed that we are still patiently waiting a response from the California Oncologist regarding the next cycles.

Love you all and God bless!
xoxoxo
July 22-2010,

Hello to all!

Sorry for the long overdue update.

In the last 3 weeks, Niko has had ups and downs. The vomiting had ceased but started again after potassium was added to his daily medicine regimen. After finally realizing the dose was a little excessive, it was reduced by 50% and the vomiting stopped.  Niko was discharged from the hospital one week ago. He enjoyed the freedom and loved spending time with his brother. We took the opportunity during the 7 days to visit with family and friends, which was very helpful for Niko’s spirits, as well as mommy and Matthew’s :-)

Niko was readmitted yesterday, July 21st to begin his second cycle of Chemo. Niko is doing really well so he is starting off on the right foot for this cycle.

We have requested a second opinion from a renowned Oncologist in California to determine if the 4 cycles of Chemo are really necessary. This Oncologist treats kids under 6 years old differently than the standard protocol. We are patiently waiting his recommendation.

Unfortunately, we do have some sad news to report. Casey, a Fujitsu employee’s daughter passed away last Friday after a long battle with different illnesses. Our thoughts and prayers go out to the family. The family kind-heartedly requested that in lieu of flowers a donation be made to Niko in memory of Casey. We would like to thank the Reimer Family for their generosity, compassion, and support. We are very grateful.

With love and gratitude,
xoxox

June 29-2010,

Family and Friends,

As you all know, Niko was admitted to the Sainte-Justine Hospital last Wednesday. On Thursday, June 24th he received his first 2 chemos: Vincristine was admitted for 10 minutes and Cysplatin was given over 6 hours. On Friday and Saturday, he received a 2-hour daily dose of Cyclophosphamide. On Sunday, he got to recuperate. The first 4 days were extremely difficult on Niko. The vomiting was so excessive that he lost over .5 kg. He got extremely weak, started to shiver, and his heart rate increased. There were a few concerns regarding the higher than normal heart rate so an EKG and an ultrasound was done. His heart rate has now settled down. Yesterday, Monday June 28th was an important day... Niko received his stem cells. The transplant was an easy and painless process except that the preservative used to preserve the stem cells stank up the room. Poor Niko still smelt like the preservative this morning: it was coming out of his pores and you can smell it on his breath. I had to change his clothes and his bed, and we encouraged him to chew gum... which he did :-) Regardless, Niko was a super trooper today. He woke up with an extraordinary level of energy. His humour was amazing! He made Tony, the nurses, the doctors, and I laugh all day. Also, the occupational therapist came by to play with Niko. They drew pictures on the window with washable markers and they played hockey (Niko sitting in a chair). He loved every minute of it! Niko had so much energy today that he didn't nap. Lastly, he got a needle tonight at 7 PM and he didn't complain one bit. Wow... if only we could all be as strong as this little guy.

I'm holding on to today because life is precious... just like our little Niko.

On another important note, we would like to thank the employees of Fujitsu Consulting (Tony's employer) for their kind words, encouragement, financial support, and prayers from all around the world. We are extremely grateful! 

Hugs and kisses to everyone! 

Love,
the Miceli Family
June 22-2010,

Hi there!

I cannot believe that it has been 3 weeks since my last update... so much has happened!

Just a week ago, Niko started to walk. This was an extremely important milestone for him. One of his goals for the summer was to kick around a soccer ball with his dad... which he accomplished. It brought tears to my eyes when I saw Niko kick the ball to his dad and remain standing. This just shows this little boy's spirit and determination. I know that his strength comes from all your prayers and support.
 
As I mentioned, it has been busy...

On Sunday June 6th, my sister Jeanne and her husband Pierre organized a 5K walk in Mont Saint-Sauveur, Quebec. Even though it rained, the 25 participants walked for Niko. How kind and adorable is that! Merci! 

On June 9th, Alyson, Niko and Matthew's babysitter organized a bake sale with her friends at Sacred Heart High School. They made adorable t-shirts for the event and got volunteers to help bake all the goods. Thank you girls for everything :-)

Then there was a wonderful BBQ at Niko and Matthew's school on June 17th hosted by Le Manage. The organizers did an amazing job! It was great to meet Spartycat. I know that Niko was pretty proud and was extremely grateful for this event. He and everyone had a blast! Merci :-)

Then, on June 19th there were two events. I got to attend the Gendron Antiques appraisal event, which was fabulous. Tony got to attend the poker event in Montreal, which I heard was pretty spectacular. We are extremely grateful to the organizers of both events. Thank you, merci, grazie!!!

I'd also like to thank all the silent organizers and volunteers, as well as the many sponsors for each of the events.

Well, my next update will be from the hospital. We will be leaving tomorrow morning.

Hugs and kisses to all of you from the Miceli Family!

with loving regards
June 1-2010,

Good morning!

So many things have happened in a week. Nikolas was in Montreal for his stem cell transplant. It wasn't as smooth as expected. Actually, I must admit it was a very difficult week. The stem cell harvest process itself was simple and pain free, but all other aspects of our stay were stressful. We are praying that we will find strength and wisdom to help us plan wisely our next 4 months to decrease any additional stress.

Wow, Saturday was a fabulous day for my family and me. I got to meet a few staff members from the Cornerstone Montessori at the fundraiser garage sale. I hope that I will get the chance to meet Rabia and more of her team before we leave to thank them for everything.

As for Saturday night, the fundraiser was definitely a success. Thank you to the organizers for a great night, and also thank you to all the helpers and attendees. It was definitely a night of celebration... of courage, spirit, and life!

In the last couple of days, Niko has started to stand on his own for a few seconds and is now able to walk holding one of our hands. He is so determined to walk... it brings joy to our hearts. He is a little fighter!

Niko, Matthew, Tony, and I are extremely blessed! We appreciate you all :-)

with love and gratitude
xoxo

May 26-2010,

Hi everyone! This update is long overdue.

Nikolas has been busy having fun with his friends. He is now getting very comfortable just hanging around on the grass, crawling, and playing with the boys and girls.
 
Niko has made progress with standing and started to take a few steps using his walker. Most importantly, Niko has gained confidence to ride his bike on his own. It is priceless to see!

Niko is currently in Montreal getting his stem cells harvested. Other than a few painful picks here and there, things are reasonably good. He should be going home in a couple of days to continue his recovery. Niko cannot wait to see his brother Matthew, who is currently staying with very dear friends.

On a sourer note, Niko is still not eating and vomiting frequently every day. It seems like the traditional medicine is not helping the vomiting, so we plan to try natural remedies.

I’d like to take a moment to thank everyone for the wonderful donations. Also, many thanks to all the volunteers that are organizing fundraiser events for Niko and our family. You are all extremely appreciated!

God Bless
xoxo
May, 6-2010
 
Hi there!
Niko is getting better and better every day. Last Sunday, he finally started to reconnect with his brother and his favorite girlfriends Hailey and Kaitlyn. Also, Niko got to drive his battery operated jeep. He smiled and laughed out loud the whole time. It was adorable to see! I promise to take a picture next time.

Great news… Niko completed his radiation treatments today (total of 31 sessions in 7 weeks). What a trooper and strong boy! The anesthesia bed was decorated with balloons, a ‘Cars’ blanket, a pillow case, a couple of toys, and a big Brown-E (I’ll have to explain that another time). Also, the team gave Niko a magic wand and a magician cape. How appropriate for Niko because he is a magical child :-) In addition, the IV pole had 4 beautiful big sunflowers wrapped around it. The bed was amazing, which Niko and parents greatly appreciated. Also, Niko received a gift from the radiation therapy team. We wish to thank the CHEO staff for being so thoughtful and wonderful to our Niko.

Cute story… this morning before we left for our visit to the hospital, Matthew, Niko’s big brother, asked for money to purchase tickets to win a cake at school. Matthew said that he wanted to win a cake for his little brother, so I gave him $3, which granted him 15 tickets. Well, when Matthew got home after being picked up at day care by daddy, he started to sing, Happy Birthday Niko, Happy Birthday Niko. Niko and I were upstairs in bed and started to laugh. To our surprise, daddy and Matthew walked upstairs holding a beautiful cake shaped as a pirate ship, which Matthew won. Wow, the power of the law of attraction. Let’s keep this up!!!!

Thank you to everyone for writing messages to Niko and our family. These messages are read daily by us and many family members and friends. We are extremely grateful for them, as well as the donations. Thank you for sharing the site with your family and friends.

With lots of love!

April 29-2010,

Since the last update, Niko has started to stand up. It is so cute to see him take a few steps with the help of his daddy. Yesterday, Wednesday April 28th, Niko was admitted to the hospital to undergo another surgery. This time, it was to insert a G-tube directly into his stomach in order to feed him. This will give us peace of mind when he is not up to eating himself. He will be discharged from the hospital on Saturday.

 

With warmest regards!
April 23-2010,

After Niko was diagnosed with a brain tumour, he had many challenges to face. Niko underwent a 3-hour MRI, an 8-hour surgery to remove the brain tumour, an operation to install a shunt, then another operation to revise the shunt, and more. All these procedures were done within 2 weeks. Following all these procedures, Niko was unable to drink and eat because of paralysed vocal cords, his right eye was droopy, and he was unable to sit or walk. In addition, Niko experienced a lot of pain in his lower body for over 1 month because the particles in his spinal fluid were pressing against his nerves. Since the start of his radiation treatments, this strong boy has regained his voice, he is now able to eat and drink, his eye has returned to normal, and he can sit without any problems. Niko is now working on getting his legs strong enough to hold himself and then he will need to work on gaining his balance back. He is looking forward to kicking a soccer ball around with his dad and big brother Matthew.

After 59 days spent at the hospital, Niko finally got discharged on Monday, April 19th. He is now an out-patient for the next couple of weeks to complete his radiation treatments, which will total 30 sessions. When his radiation treatments are complete, Niko and family will be able to spend the following 6 weeks at home recovering from this whole ordeal.  During the six weeks, we will also be planning for the next phase of his treatment which will be high-dose Chemo.  This phase of the treatment will take place in Montreal at the Ste-Justine Hospital and will last 4 months. This will require us to remain in Montreal during the entire treatment.

Mom and dad will provide regular updates on Niko’s journey. Thank you all for the prayers and thoughts, which have helped keep this family remain positive and to have the strength to handle all of the challenges faced. 

With love and gratitude