Fighting for baby Nikita

Campaign creator Clare Fisher
Fundraising for Nina, Nacho & Baby Nikita
$29,730 raised
100%
GOAL $5,000
273 donations
 
since Aug 2019
 
 
 

Our beloved Nina and Nacho welcomed baby boy, Nikita on 13 August. What should be a happy time has brought heartbreak as their beautiful little fella was born early due to complications and has been diagnosed with Congenital Leukaemia - a rare and dangerous condition.

Calling central Australia home, Nina was flown to Adelaide Hospital as little unborn Nikita was struggling and needed an assisted birth. Nina is now recovering from surgery and both her and Nacho are aching to hold their little boy. Nikita is being kept in an incubator and while there are treatments, they are invasive and a great risk for such a fragile new little human.

I’m hoping the community of Alice Springs (and anyone Nina and Nacho have touched) will rally together to support them both to stay in Adelaide as long as needed for their precious baby’s health. I know Nacho and Nina would be first in line helping someone in need - let’s get behind their little family and give them the time they need to bring their baby home safe and sound.

33
updates

12
Jul
Dear friends,
We started the new drug (Inotuzumab) on Tuesday 30/06. It already showed good results with a great drop of blast cells in 48h. We got another dose this week, and hopefully the last one this coming Tuesday.

We can't tell yet what would be next as we will need to do a bone marrow biopsy (again) to see the effects of the drug on the bone marrow.

We've been in and out the hospital since in Melbourne. Some ups and downs. Staff is very nice and caring. However, there are definitely some fails in their system. Hopefully, things will improve.

Melbourne is officially in complete lockdown. It is very weird. But quite reassuring for us, to know EVERYONE is to be careful now. The weather is very 'Melbourne' :sunny, then rainy, and vice-versa.

We are staying warm and safe at home when not in the hospital. We've been so blessed with such generous food/meals/donations from friends. It makes a huge difference, believe us!

Oh, something not to be missed, we can see now 8 of Nikita's teeth! He still can't/refuse to eat unfortunately, but we are doing our best for all his development to catch up. For sure, he knows how to smile and laugh.
Tomorrow, we'll celebrate his 11th month! 11 month.....

Take care and stay safe everyone.
With love,
Nina, Nacho & Nikita.
25
Jun
Dear friends and family,
The last week has been quite tough. The packing, travels, change of city, hospital, health care team, the search for accommodation, unpacking (which hasn't been done yet actually) and the higher risk of Covid19 infection in Melbourne. It has all together been overwhelming.

Nikita had the surgery to get the catheter on Monday. We have been discussing for months about the feasibility of this operation on such a small baby. The moment came and it was very stressful. The procedure went very well.
We were all ready for the apheresis to collect the T cells on Tuesday. Unfortunately, the doctors announced on the same day that Nikita's T cells level was too low to allow collection. The disease is back and more present (up to 38% in the bone marrow). When the disease evolves, it takes all the room for the healthy cells to grow and reproduce which is the reason why T cells became too low.
We had to remove the catheter on the day. It was such a frustrating time. First because the CarT treatment is not possible anymore (at this stage), and the risk from the procedure has been for nothing. Second, because the situation has been mishandled, and we believe this terrible outcome could have been avoided with better time management, communication, and diligence. We understand that mistake can be made, and this time it had a huge impact on us. But it happened, and there's no way back. So we had to focus on other options.

Yesterday we discussed again with the doctors and we decided to use a new drug called Inotuzumab. It targets a specific marker on the cell called CD22, which is a marker Nikita's leukemia cells have. We still have some more reading to do to better understand this treatment. Hopefully this will help keep the disease under control and get it down again so we could reconsider the CarT, or transplant.

It really feels like it's never ending. The reassuring thing is we have great support. Some friends have already dropped some delicious meals this week, and catching up with close friends have helped so much too (for our own wellbeing/sanity).
Also Nikita is always so charming, and despite the fatigue and the challenging procedure this week, he already made friends here, and nurses are fond of him.

Thanks again for all your good energy.
Take care.
Nina, Nacho & Nikita.
11
Jun
Dear friends,
It has been such an intense week -again. We have contacted specialists worldwide, and centres offering clinical trials to infants. We met several times with our oncologist. Our brains are about to explode, but for good reasons.

It has been so heartwarming to find many experienced health professionals answering back with such precious information, and communicating together to give Nikita a chance, the best chance.
We are now so relieved to have confirmation that the Royal Melbourne Hospital will be taking care of Nikita. They are running a clinical trial using CAR-T cells by Novartis. The treatment is still at trial, but it has been on the market for many years and has shown promising results so far. The principle is to harvest Nikita's T-cells (which necessitates a special catheter, and a senior anesthetist to put it in such a small body). Then the T-cells are sent to the US for manufacture (where they are genetically modified to target the specific marker present on Nikita's leukemia cells). Once done, they are sent back to Melbourne where they will be infused back to Nikita. This is the simplest way I could explain the process - see video to get a better picture.
Of course, it comes with many more details, risks, precautions, and limits. And, it has been unitedly decided that Nikita will still need a transplant if the treatment goes well-considering the high-risk relapse of the disease.

Overall, this is good news!

We are so grateful - again, and again- for all the help from health professionals, doctors, specialists, nurses, staff, and for all the continuous support from friends and family. Also, thank you so much for the friends and anonymous friends who donated via mycause.com.au, it really helps with the everyday expenses and special expenses for Nikita.

We will send you an update very soon to let you know where we're at.Thanks to all of you reading, thank you so much for being present for us.
Big big hug.
Nacho, Nina, & Nikita

https://m.youtube.com/watch?v=XeoAaNEhNds
01
Jun
Dear friends,
The treatment didn't go as expected. The last bone marrow biopsy has shown that the disease is still present and became resistant to the chemotherapy. The transplant isn't possible in those conditions.
Our oncologist was quite pessimist about what we can do, as the local team has no further solution for Nikita.
I have done lots of research and have been in contact with other families in similar situations around the world, and we do know that other treatments exist and that Nikita could benefit from a clinical trial.
We have shared all the info with our doctor and she is looking now at the feasibility. We also contacted other specialists around the world with long experience in infant leukemia.
Again, this is a very uncertain path, yet a matter of urgency, and it is not easy.
But our message is: We don't give up.

Surprisingly Nikita is looking so well and happy in the last week. And we take it as an encouragement to keep fighting.

We are hoping to give you more and better news in the coming week.
Take care.
With love,
Nina, Nacho & Nikita.
12
May
Dear friends,
We officially finished the whole cycle of chemo this week! Fingers crossed, the LAST cycle of chemo. We only realised we haven't post anything for nearly a month, apologies, time has been hectic -seems like I say that all the time. A lot of hospital admissions, some new meetings with the consultants to discuss next steps, side effects to control, routine check ups and treatments, transfusions, pre-transplant tests and appointments, and also some box packing in preparation to our move to Sydney for transplant.
A bone marrow biopsy is planned this week, and the results of it will tell us what to do. In the best scenario, and the one we expect, Nikita has reached remission after this cycle and we are good to go to Sydney.

The transplant is a MAJOR step in the treatment of his leukaemia, and we are hoping it will be the cure. We're experiencing a mix of feelings of fear, uncertainty, and excitement.
One more step to come back to normal life?

Also, Friday, while going for a routine check up that was gonna take about 1-2 hours, it has been found from a previous x-ray that his CVC line (where he gets all his medications & blood products), was not in the right place anymore and needed to be removed. Nikita has been to theatre the same day on emergency list & we ended up spending 30h at the hospital. Everything went well. We are back home with a new line in Nikita's arm, and a few stitches.

Nikita has been flirting with several nurses already, he's in good care
12
May
Dear friends and family,
First, happy Easter to all of you. We hope you're having a wonderful weekend close to your loved ones, and if not, we hope you're taking this time off in solitude to rest, take care of yourself, and do things you never had time to do.
We're doing well here, and are now still digesting the huge amount of chocolate bunnies have offered to us.

Nikita had his biopsy on Monday, and results have come back on Thursday. The numbers are pretty much the same than when we started the cycle of chemo. This means that the disease is under control thanks to the chemo. However, the treatment didn't manage to get the numbers down and closer to zero. As confirmed before, Nikita's leukaemia is a tough, very tough one. Our oncologists have -again- discussed with doctors from interstates and overseas to agree on the next step: We are following the same protocole (Interfant 06) with the next cycle that uses the same drugs but at very high doses. We are therefore expecting lots of toxicity.

We have been admitted on Friday and we began with a 24-hour chemo infusion followed by a lumbar puncture. Nikita is doing fine, feeling a bit flat and very upset most of the time. But we still get some of his beautiful smiles, and some shy laugh from now and then. He is receiving a large amount of fluid so we have to hold on with the feeds at this stage, which with no doubt doesn't help with his grumpiness.

Doctors, nurses and other staff are amazing as always. We acknowledge all the extra work and risk they take working in a high-risk environment for Covid-19 infection (not especially our ward, but the hospitals in general).

We will keep you updated as always in the next days. We are not sure yet how long we'll have to stay in the hospital.

Sending huge e-hugs to all of you. You're always in our thoughts, and your messages, intentions, and prayers keep our spirits up :)

Nina, Nacho & Nikita

https://www.facebook.com/104353024302419/posts/249091289828591/?vh=e
24
Mar
Dear friends,
The last days have been quite hectic and stressful. The whole country is now undertaking measures we've been following for the last 7 months. Social distancing, keeping hands always clean, buying lots of hand sanitiser, ho, and becoming scared everytime someone looks unwell close by... That is our routine. It does take a while to adapt and to be honest, we still learn as this is again not how we imagined or would naturally do. But we are doing it to keep our little one safe, with love and perseverance, every single day since he was born. I know there have been many discussions regarding the new rules governing our society, I know many of our European friends did not understand first, but please remember, we better be safe than regret forever. We are so glad friends, colleagues, leaders are taking wise decisions to protect themselves, and therefore others while they can.
We still have to go to the hospital almost every day for treatments that cannot be interrupted. Every step outside the door is stressful. But surprisingly, lately, we don't struggle much anymore with the adorable elderly we cross by the streets, wanting to hug Nikita - which somehow it's hard to blame as he's really so adorable. But still, please know that for parents of a sick child it adds worries everytime someone gets too close, or touches him. And again, I don't think I ever thought of that before everything happened - so there's no one to blame, it's all about learning and sharing.
Nikita has been quite well in the last two weeks, some ups and down, we needed some transfusions and he's been vomiting quite often - again this is expected with the treatment is undergoing.
He still smiles everytime he can. We noticed everytime we sing or dance for him, he can't stop laughing, and that laugh... makes you dance for hours! So yes, he's keeping our spirits up, and our bodies, so exhausted! :D

We officially finished the cycle with the last drug given yesterday (a 6-hour infusion). Now we expect his blood counts to drop and we need to wait that his bone marrow recovers before we do a biopsy. Hopefully next week, so we'll be able to discuss the next step. As mentioned to many of you, it is unlikely we'll go to transplant before another cycle that can last two to three months. We'll keep you informed as always.
Ronald McDonald House -where we are staying at the moment- has been very supportive, and the community's food donation has allowed us to limit our ways out for shopping. They have taken very strict measures recently to stop spreading the virus and to protect the children. The team has been fantastic really, we can't thank them enough. Thanks so much to our friend who sent meals to us, it really was so heartwarming and of great help.
We feel very lucky that we can smile and be grateful everyday while we're fighting this 'endless felt' battle.
Thank you, thank you, thank you. For all your lovely messages, prayers, and positive thoughts.
Take care.
With love,
Nacho & Nina & Nikita.
12
Mar
Hello everyone, hope that you are doing well.

Nikita has been fine, keeping up with the treatment and recovering from a stomach virus that he had a few weeks ago. He is still not feeding conventionally so we have to give his milk down the NG tube, but we keep trying with some mash fruits and veggies to get the good habits back. Today he is receiving a red cells transfusion to level up his numbers (usual effect of chemotherapy).
In a couple of weeks, he will have, one more time, a bone marrow biopsy to see how the disease has evolved, and based on the results, the doctors will tell us what is next. It is likely that he will receive one more cycle of treatment to consolidate his status (if the result shows remission) or one more cycle to attack harder the disease (if the leukemia cells are still present at high level).

Tomorrow he is turning 7 months old, and he keeps showing us how strong he is, and also proving that even when he is feeling super sick, he can always give a little smile and keep going.

Regarding us (Nina and Nacho), we are fine, tired after all this time of intense life, but knowing why we are here for, trying the best to look after the little man and ourselves, and expecting to see a change soon.

Big kiss to you all
Thanks for all your messages, prayers and support.

Xoxox
15
Feb
Dear family and friends.

Sorry for not giving news for quite a while. Nikita has been keeping us busy as usual.
We arrived at the end of the first cycle of Interfant 06. We were allowed to get out then after 31 consecutive days at the hospital. We are now staying at the Roni Mac accommodation (place that we called home for the last 6 months) and still have to visit the hospital everyday.

Nikita was very alert and looking happy. He's been playing a lot, and starting to try some mash veggies and fruits. :) He is getting some cute big puffy cheeks we want to pinch! this is due to the steroids that he received for over a month and it's likely to go away in the next weeks. His legs and arms are stiff and weak also as a side effect of some of the chemo -Vincristine in particular. And some mucositis in the last 4-5 days has prevented him from taking the bottles, so we are feeding him through his naso-gastric line-thanks we have that.

We are working with the physiotherapist and the doctors to help him recover, so his muscles grow again, and he can catch up with his developmental skills.

Last week -Wednesday- he had a LP and Bone marrow biopsy, and we waited til TODAY for the results.

We didn't manage to get him to remission, however, his MRD is 0.01% and 0.02% which is SO close to remission! The doctors are happy about the results considering the agressive leukemia we are dealing with.

From that result, we have to do the second cycle of Interfant which consists in consolidating those results and wipe out the very last leukemia cells still floating around. The chemotherapy was indeed efficient but our baby's body still struggle a bit to flush out all the extra fluids. So we are now at the hospital trying to get his renal & liver functions ready for another set of chemotherapy. Hopefully tomorrow.

The second cycle can take about 8 weeks (also depending on his wellness and recovery). It is still a long way to go..... we are getting prepared for it ?

with your support, love and prayers always.
Thank you
21
Jan
Hello again everyone,
We are trying to keep up with the updates. The days are long here, but Nikita is doing fine. The chemotherapy has shown to be effective so far, yet toxic. We’ve seen some signs of mucositis and general unwellness caused by the treatment. It is hard to see our lovely baby getting sick and very unsettle but we believe the treatment will get him to remission again. We use many pain killers to help him relax so he does not suffer much.
As part of the side effects, he is significantly immunosuppressed, what makes him more susceptible to get an infection of any kind. Hence, he is under constant monitoring and we must be even more careful than usual.
In an overall view, we can tell that he is a very strong and beautiful boy, happy, and very social -when times allow. And we are lucky to be able to spend all our time next to him during this process.
Thanks again to everyone for your love, support, and prayers. We feel very lucky.
Big hug from Nina, Nacho and Nikita
08
Jan
Day 9 of treatment today.
Nikita's been at the hospital since the 30th and he has been through the 1st week of treatment quite well. The week was an introduction with steroids to what started yesterday, the chemotherapy. We had the chance to take him out for a few hours over the weekend and he loved the parks and rivers around this area.
He is, as usual, very alert and responsive, and he is keeping us busy with the playing and cuddling times.
The upcoming weeks are going to be the toughest of this cycle, where we hope he will still stay strong, and not suffer the treatment much.
We are in better "spirits" compared to last week, as we are prepared for what is to come, and decided to take it a day at a time.

Many thanks everyone for your support, prayers and messages.

All our love back to you too ???
Nina, Nacho and Nikita
02
Jan
Hello family and friends. We hope you had a very good new year.

Unfortunately we come to give you bad news again. On Monday we came to a checkup and discovered that the disease is back, the count of cancer cells in blood and marrow is very high, and assume that it happened in recent weeks. Being so close to the transplant process (we were going to sysney in 2 weeks for it) is a devastating and very sad blow.
From Monday we are in the hospital, and already started with traditional chemotherapy this time, and hope to be able to control the disease and reach the referral in the next 3/4 months to be able to go to transplant at that time.

Nikita is very tired and in a bad mood because we can't feed him much and medication, but always with a smile when he’s relaxed.

Your strength helps us to move forward beyond the physical and emotional fatigue we are suffering.
This is like getting back from scratch, luckily he's bigger and stronger than when he was born, but still, this damn disease is unpredictable, and the forecast is reserved.

We hope to be able to pass better news in a few days, but for now we know nothing

We send you a big kiss
???

Nina, nacho and Nikita
01
Jan
We wish everyone a wonderful break. Enjoy all the precious moments with the loved ones.
The magic of this period for us this year, is to feel your ongoing support & love, and to have some great time with Nikita at home.

The cycle of immunotherapy is doing the good job so far. Nikita caught a cold virus that made him very sick unfortunately but he is recovering now. The cycle ended on the 26th of December and long series of tests will follow from next week. Depending on the tests results, we should be flying to Sydney mid-January for transplant. Doctors have found an umbilical cord for Nikita. The match isn't the best, but good enough to use for his transplant.

Such weird feelings, there is so much fear, but also, a sense of excitement.

Again, we wish you a fabulous time during your break, and 2020 to be full of love, joy and prosperity for you all.
We send you lots of love.

Nina, Nacho & Nikita
05
Dec
Hello friends,
First of all, a huge thank you to our friends in Argentina for organising such an event to increase the number of bone marrow donors! Thank you so much for all your support.

Nikita is just over 4 kilos! Looking beautiful, and getting physically stronger.

We had the meeting regarding transplant. It was indeed very scary and left us very confused at different levels.

Even though the doctors convinced us transplant is the only way to go for Nikita now, they did warn us that it is a life-threatening procedure, there are many risks and side effects associated, and some side effects are long term. Also, Nikita would be their smallest/youngest baby ever receiving transplant.

They also explained that considering Nikita had Leukemia so early, the cancer certainly started at the stem cells level. They reminded us how agressive and tenacious his Leakemia is. For those reasons, their main worry is that the disease comes back after transplant. And they believe, it is likely to happen.
So..., we're still confused. Now thinking,
there is still a tiny chance again it works, and Nikita finds a cure. And we pray it happens. Otherwise, it could be a way to gain some time for who knows what is to come from oncology research, as new therapies appear every year.

Nacho and I have done some research that we reviewed with our oncologists. There is one existing new treatment Nikita could be eligible for after transplant. Unfortunately, because it has not been out for long enough, it hasn't been approved in many countries. In Australia, spots are limited too. Which makes us think that we may need to go private to access his last chance treatment if we need to. But again it is far too early to decide. And we want to believe, we won't need to. We still feel we need to be 'prepared' for this eventuality.

We started the third cycle of immunotherapy last week, with inthertecal chemotherapy, for another month. We hope Nikita is gonna go through this cycle well and stay resilient as he's been. He is always looking wonderful and smart. And he makes us stay strong setting such a great example to follow... We are so proud of him.

Being everyday at the hospital, we notice all the families in similar situation than us. It makes us so sad to see so many very young children suffering Leukemia, so sad. It also reminds us we are not alone in this difficult journey, and we need to stick together strong.

We encourage everyone who can, to register as a bone marrow donor, and to all pregnant women to donate their umbilical cords, it is so easy and yet it can save a life.

With love,
Nina, Nacho, Nikita.
21
Nov
Update from NNN:
Hello there,
Nikita has been doing pretty good lately. We have finished the second cycle of treatment, and have been for the very first time 6 full days out of the hospital, enjoying moments at home, walks in the park, playtime, and very long cuddled naps. Keeping our spirits up.

Last bone marrow biopsies and CNS samples show that the disease is under control.
His liver functions are recovering very well, and it seems like his bone marrow is producing new healthy cells. Some of those news is a mystery still, the doctors haven't got a clear reason how this happened but they are happy it happened. It is the most positive news of all.
Also, our baby was 3.86kg yesterday, still small, but it is a great progress since birth! Most importantly, Nikita is starting to smile, to follow our voices and movements, and to focus on some images and sounds... He is so beautiful, we are so lucky.

We are meeting the doctors in Sydney this week to have a first chat about the transplant, and all that comes with it. We know in advance, it is not gonna be a pleasant talk, and we're scared of what we don't want to hear. We also have been told, transplant, even thought is torturous, is the only way to go for Nikita's healing.

Even in the most beautiful and peaceful day I keep praying everytime I can cause I know the battle is not done. However, we are so grateful already for what life has offered to us and for all the precious moments we are able to spend.

Thank you for all your support, prayers, and love messages. Thank you.
05
Nov
Update from Nina:
Beloved friends,
First of all THANK YOU so much for all your support, and the amazing response to our Bone Marrow Registery drive in Alice Springs and call to register all around the world. In the hardest time I told myself to always look at the bright side. You all have brought so much light, and have kept us smiling and hoping for the best.

We are so sorry we haven't been responsible the last two weeks. Again, it has been very hectic. Some stressful times, some celebrations & some new worries.

Good news: Nikita's spinal space is almost clear. The aggressive inthetrecal chemotherapy has done its trick. This was very positive and emotional news. Treatment needs to be continued to ensure the leukemia cells number keeps decreasing as close to zero as possible.

This bonus treatment didn't come without side effect unfortunately. Nikita developed mucositis which made him vomit with blood, and being very flat. This has settled down well, but obviously, was very scary for us. It seems like it might have been some kind of mild infection too as Nikita had fever as well. For those reasons, we had to stay at the hospital longer than planned, so he could be closely monitored.

Everything is looking much better today. It is incredible how strong and brave our baby is. He would have developed such a high pain threshold, and such courage.

A few other details worried the doctors last week, for that reason, Nikita had two bone marrow biopsies in three days, plus his usual lumbar punctures. We are waiting for reports from the lab to clarify, confirm or disregard the concerns.

They keep telling us how unique, complex, and unexpected Nikita's case is. And obviously, it makes us worry everyday more even when we think the hardest is past.
We do enjoy every good moment, every second of joy, and the happiness of being a strong family. Time is so uncertain, we need to live the moment, and make the best of it.

Again thank you so much for all your prayers, love messages, enthusiasm in joining the bone marrow registry, financial support and all the good energy we are receiving. It sincerely helps so much.
Thank you to all our special friends for the amazing efforts making the Alice Springs drive such a success, and again, for sharing our story.
22
Oct
Update from Nina and Nacho:

Hi everyone,
Nikita has been growing and doing well in the last week.
Unfortunately at the last lumbar puncture doctors have found more Leukaemia, Nikita has developed CNS (central nervous system) disease. It is worrying but the doctors have a plan for it, and we keep hoping it will help. Cancer 'likes' to hide in the spinal space as it is harder to treat.
We have started the second cycle of immunotherapy, and had to stay at the hospital for the first week. No side effect so far. Nikita must receive two lumbar punctures a week for interthecal chemotherapy from now on, which means we would spend more nights at the hospital, and use more pain killers too.

Our baby is beautiful as always and still very strong. Parents are still solid and tired!

We have received lots of messages from friends and family with support and sharing initiatives to encourage others to register to the Bone Marrow Registery. It is again heartwarming. We really hope we will find the perfect donor soon!

Alice folks, please join us on Wednesday 30th, between 9am and 2pm at Andy McNeil room, Town council to register and safe a life.

Thanks again.
12
Oct
Update from Nina and Nacho:
Nikita has been discharged yesterday, and re-admitted in the night as he had high fever... He got some more blood tests and some extra preventive
antibiotics. Doctors haven't found any infection yet but they will monitored him while they're waiting for all results. So we got to spend the nights at the hospital again.

The biopsies on Thursday have shown great recovery of healthy cells, which is very positive. However, the leukemia is still present, not only in his blood but in his spinal space too. Again, considering the uniqueness of Nikita, the doctors are not sure how to interpret those outcomes. After meeting all together, they felt confident to come to us with a plan. They believe the overall analysis show positive results. And the second cycle of treatment should help getting to the ideal result.

We are still looking for a bone marrow/cord match if we get the chance to get to transplant.

Despite all the stressful news, Nikita is looking so beautiful and stronger every day. He is now 3.09 kilos! (which is a victory for a preterm baby).

Thanks again for following our story, and for your support. We miss you.

Friends in Alice Springs: A swab collect to register on the Bone Marrow Registery will be organised on the 30th of October at Andy McNeil room. please get in touch if you'd like to help/info.

Big hugs,
Nina & Nacho xx
09
Oct
Update from Nina and Nacho:
Our baby love has been keeping us so busy between the hospital and home.
Tomorrow, he will be admitted for some biopsies that will officially mark the end of the first cycle of treatment. We are hoping the biopsies will show we are on the right track.

Unfortunately, we haven't find a bone marrow match yet. We encourage everyone to register on the donors list, https://swabtheworld.com/become-a-donor/ .
We are also organising a swabs collect in Alice Springs on the 30th of October - a Facebook event will be created. Please contact us if you'd like to volunteer for the event, we need your help.

Thanks again for all your support. We are scared everyday, and so stressed of what is to happen next. But, thanks to you, we do feel strong in this battle.
03
Oct
Exciting update from Nina and Nacho!
October brings not only spring, the sun and the blossoms, it also brings a spark of happiness to our days.

In the last 48 hours the doctors have been discussing and agreeing that Nikita, despite his disease, is getting stronger. The NICU team, angels who looked after him since Day one, discharged him this afternoon. Because of his condition, they agreed home is a better environment for him than any other ward at the hospital at the moment. The chances of getting an infection are very big in a hospital environment.

So we got him with us, at home!!

He will be staying with us until he will be doing the next cycle of treatment.

Finally having the chance of looking after him, being next to him, sleeping next to him, it is a moment that we saw far, impossible, utopic. It was a dream.

We don't know how long it will last, but we know that we'll enjoy every second.

He is showing his strength and will to fight, and getting ready for what is to come.
We are still looking for his soul mate somewhere around the world, someone who is HLA compatible for his bone marrow transplant.

We are hoping everyday to find that person for Nikita
xoxox
27
Sep
Request from Nina and Nacho:
For over a month we have been through thousands of challenges, billions of worries, dozen of antibiotics, hundreds of drugs and medications, some important procedures, so many unforgettable joys, and lots of victorious mini battles.

Recently, for the first time we are talking about bone marrow transplant. Transplant is a massive step in the treatment and also a huge risk as many complications come with it. However, it is today, the only chance to cure from Leukaemia.

We have no idea yet if this will be a possibility for Nikita, if the current treatment cycle will have positive outcomes, if Nikita will cope well with the second cycle etc etc ...
However, after all the 'if, if, if', the last 'if' that we don't want to face is 'if we don't find a match for his transplant'. Cause at this stage we'd reach the limit of the impressive medical progress.

Therefore, we are asking all of you, friends, family, friends of friends, if you would accept to become a bone marrow donor. We cannot donate for a particular person, and we only donate when a match is found. You only need to do a swab to register, and you become an international donor. Please follow the link to start: https://strengthtogive.org.au/register/ (I contacted them & it is fine for anybody under 45 to register).

For pregnant women, you can also donate your cord at birth.

If it is not for Nikita, it can save another life, give a chance for another kid to survive this disease. We would be so grateful if you could share this message and encourage all your friends, family and acquaintance to register. The more donors registered the more chances we have to find a good match.
You will find more info there:
https://www.abmdr.org.au/donor-brochures/

Let's fight together with Nikita & all patients suffering Leukaemia.

Thank you so much again and again for all your support. Please do not hesitate to contact us if you'd like more information.

Nina & Nacho.
19
Sep
Update from Nina:
Our baby Nikita has been to theatre yesterday. We were so nervous! A new line has been placed in his chest, a lumbar puncture has been done, they also injected another dose of drugs in his spinal space, and they did a bone marrow biopsy to check the efficiency of the treatment at this stage.

Nikita was very upset after all procedures, but again, stayed very strong, and fell fast asleep in mum's arms for hours after all procedures.

Results have come back this morning, and the doctors were so glad to share that results are better than what they could have expected as best. It is almost unreal, but we are positive the treatment is helping our little soldier. It is another small battle won. Everyday new challenges occur, however, we are so grateful and so happy when those good news happen. It really reinforce our strenght and believe we'll win this long and torturous fight.

Maxi visited us and brought heaps of cards, letters, gifts, and positive vibes from all of you in Alice Springs. We are so lucky our pathways crossed yours, you are amazing humans and really give us hope and feeling to be stronger together.

This photo has been taken 2 days before the surgery. Nikita needed a bath with special soap prior to the procedures. This is the only time he didn't have any tubes going in and out his nose... So beautiful, isn't he!
16
Sep
Here are some updates of Nikita:

Our baby is looking every day more beautiful & everyone who knows him at the hospital is so amazed about how strong he is, how well he is coping & how clever he behaves! We already are such proud parents!

His immune system is the most fragile. While taking off one of the thousand IVs from his foot, an infection appeared. He had to get additional antibiotics and medications. Planned procedures and treatment had to be rearranged.

Doctors are looking at his blood tests results everyday to make sure he is recovering well. Since yesterday, numbers are looking much better. So, another mini battle to be behind.

We're having some special visits from friends and mum is still around to help & spend time with our baby. It really brings joy into our new lifestyle.

Thanks again and again for every message, prayer, and support from the heart. We are telling Nikita every time how much he's loved and blessed with amazing people in his life.

Love,
Nina & Nacho.
10
Sep
Update from Nina (and a gorgeous pic of the handsome little man!)

Nikita's very first sucking feed happened yesterday night! He is getting more and more milk. This will hopefully help him gain weight as he lost quite a lot since birth. He also can breath on his own now (even though he needs some support from now and then).
His skin is healing slowly but very well from the biopsies.

Our baby is still very fragile but so brave.
Those are the little things that bring so much joy. We are so proud of him.

Thanks for your prayers and positive thoughts. Love. xxx
07
Sep
Update from Nina ??

Yesterday doctors have taken the ventilation tube out which means it is much easier now to do cuddles! ? And Nikita is not annoyed by it anymore! He is every day more beautiful.

We cannot start the chemotherapy as his liver is too fragile still. Therefore we will start an immunotherapy by the end of the week. The new planned treatment is very unique and adapted to the exceptional circumstances.
We are learning so much about the medical world and we had to accept that every decision made and to be made is based on a day-to-day basis.

We are so grateful doctors are great and staff is so supportive. All support and news from friends and family bring a bit of joy and more hope for our little family. Thanks for joining us in our prayers, and in our battle.
03
Sep
Update from Nina:
Last Sunday, Nikita offered the best gift to Daddy (and Mummy!) for Father's day. He open his eyes for the first time for more than a few seconds. He is sooo beautiful. Being more awake and having lost good amount of fluid, he is now able to move more and get his eyes wide open. He already has lots of expressions on his face. It was such a special moment.

Unfortunately, for the same reasons, our baby can feel more, and lately he struggled to get some sleep, and was in great discomfort. The doctors are trying to find the right balance so he's more awake but not in pain, and it is not easy.

Treatment has started last Thursday, we are in the first stage of the induction cycle. Medications have already help and Nikita's first tests have shown good results.

Thanks again for all your support and messages. Really help keeping our minds focus and strong. We can feel all the love, and we share it with our baby every single day.

xxx
28
Aug
Update from Nacho:
‘Today the doctors will be performing some biopsies on Niki to help with some details about the prognosis and prior to the treatment that should be starting anytime soon.
He's been fine and stable, and handsome as usual.
Thanks again for everything you and everybody is doing for us.’

I just KNOW we can hit the $20,000 mark so please keep sharing and sending love to this fabulous couple and their very handsome son ????????????

#fightingfornikita #ninanacholove

https://www.mycause.com.au/page/212000/fighting-for-baby-nikita
24
Aug
Update from Nina:
Nikita is still in the Neonatal Intensive Care Unit. Doctors want him there longer to focus on growth and development before starting any treatment. They also want him to get some more strenght so they can get a biopsy from his bone marrow.... It will give them more information on the leukemia. Today for the first time Nikita was fed with some milk. Unfortunately he cannot receive mum's milk at this stage which was heart breaking for me. I'm happy he can still have milk from donors though. Nacho & I are staying strong and kind with each other to best support our baby. My mum has been amazing help. I'm so grateful of all the love and support we receive. I sincerely have no idea how I could go through this terrible time without. xxx
21
Aug
Update from Nacho:
Here is our little chubby Nikita. He's been fine and getting ready to go to pediatric ICU and hopefully soon start the treatment. Thanks for everything you and everyone's is doing. We will take the time to Thanks everyone individually.
???
20
Aug
Message from Nacho:
’Nikita was good today, stable and getting less assisted. They mentioned that tomorrow they will consider move him to the pediatric intensive care, that means he could get the treatment soon. That’s very good news.’

Nina’s mum has also arrived in Adelaide to offer support and love last night and Nina and Nacho have both expressed their surprise and thankfulness for everyone’s generous donations. Wishing you all love, fortitude and hope xx
19
Aug
Message from Nina:
I just came back from the hospital, and tonight, like a sign or an answer to one of our prayers, I got the chance to hold my baby. It was so emotional.
I just came back home and looked at my phone. Reading all the messages and seeing all the support from friends is so heartwarming. I can't thank you enough for offering your support, it means so much to us. And it really helps feeling stronger. Thank you.
18
Aug
Message from Nina
The last days have been the most intense in my life and the hardest. I'm slowly recovering for the surgery. But not holding my baby and seeing him assisted in the little box is the most painful pain. He's so beautiful, it is incredible what such a little being can make you feel. All messages and love from family & friends are so important and I'm so grateful we have very special people in our lives to support us. ?
18
Aug
Message from Nacho
Our gorgeous baby Nikita was born on the 13th of August. He is such a beautiful boy. When we heard his first little cry we were fulfilled by emotions.
Born at 35 weeks with 2,5kg, he already looks pretty big and tall.
Nikita has to come to life early as he was struggling inside and getting weaker. Doctors have found now that our baby is fighting against congenital Leukaemia. It is a very rare case. Treatments exist but are extremely invasive and for such a little one the chances of success are very low.
Doctors have explained there are no causes or factors being evidenced. It is a nasty and completely random disease.
Nina is still healing from the surgery that has been a bit of a shock and we are trying as best as we can to support our little one who's taken care of by the doctors in the incubator.
It is so hard not to be able to take my Nikita in our arms and to look at him being so strong yet so assisted. We pray all the times so he keeps fighting and he receives the best care. We will be staying in the hospital as long as the treatment takes.
Thank you again for all your support. This is a hard moment, and we are so grateful of family and friends love and support we receive which make such a difference in this life battle.
Nina & Nacho.
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$29,730 raised
100%
GOAL $5,000
273 donations
 
since Aug 2019
 
Fundraising for
Nina, Nacho & Baby Nikita
Nina and Nacho need our help so they can stay with their very ill newborn in Adelaide and get him the help he needs to have a bright future.
Funds banked to
Kahina Kolder
Campaign creator
Clare Fisher
Alice Springs NT
 
 

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