Fighting for baby Nikita
Update
21 Jun 2021
Dear friends and family,
The results from the bone marrow biopsy from Tuesday, took a bit longer to come but. They came back looking GOOD! No disease detected! This is such amazing news to celebrate. It's always so stressful waiting for the results.
We will be meeting the doctors next Monday with many questions regarding the next steps.
Life has been good at home. Still full on, but looking into hiring a caregiver/educator at home to help - PLEASE if you know anyone, in Melbourne, let us know.
Nikita is learning so much and progressing well. Eating more and more, trying new things, walking on his own better and better, enjoying the outdoors and laughing so easily. We embrace all those moments of pure joy, and we are slowly planning forward.
We still have regular weekly visits to the hospital, and medications that need monitoring. Nikita still has Hickman lines, pending from his chest, going straight to his heart - this is still a source of anxiety when playing and bathing. And a nasogastric tube for formula feed overnight. We are progressively decreasing the amount of milk for solid food, it is looking good so far. We are hoping to not need this tube he carries on since birth, soon!
He is a bit of a celebrity everytime we go to clinics, he loves waiving, sending kisses, and becomes very chatty with whoever passes by. He knows how to keep us very busy,and 'under his charm'.
Sending lots of love to you all. Please take care.
Love,
NNN.
Update
03 Jun 2021
Dear friends and family,
Transition to 'home' has been SOMETHING.
The first couple of weeks were overwhelming for the three of us with so much to organise, such huge changes, adaption to a new environment and setting into different routines. We decided to go for a 5-day break near the ocean, as it was very much needed.
Being together, having more freedom, seeing Nikita learning SO much, exploring and excited to discover, is all WONDERFUL. He is now on the move always, we don't have enough of a pair of eyes each to check on him, but doing our best ? Also finding new ways to make our life easier - or as easy as can be.
We are going twice a week to the hospital for regular check ups, blood tests, iv medications, and consultations with doctors. Still being followed by several therapists. Nikita is clinically all looking good and on the right track, still on several medications including immunosuppressors. Starting to have some solid food to eat (one ingredient a week) and enjoying it! He also seems to tolerate well, which means his guts are slowly rehabilitating and healing. He is so full of joy and energy. So curious and kind. He is also so social and his hugs and kisses are the best! We enjoy watching him learn and grow, and sleeping in his beautiful cot amongst all his teddy bears. My heart melt every single time.
We have made huge baskets of treats and little gifts for the ward team, the Transplant unit team, the doctors office, the lab doing everyday blood checks, and the lab doing specific tests like the MRD, CarT or stem cells tests - thanks to all your contributions to Nikita's art! They LOVED it, and were very surprised with all your generosity.
Nikita's next bone marrow biopsy is in two weeks. It is always a time we apprehend with anxiety. But we stay positive ?
We send you lots of love, and will keep you updated soon.
Take care.
Love,
NNN.
PS. We will appear on channel 9News Melbourne in the next 24h to support Ronald McDonald House fundraiser Stronger Together. Stay tuned for a seperate post with details.
Update
08 May 2021
Dear friends,
VERY SPECIAL ANNOUNCEMENTS.
Friday 7th of May, we were officially discharged from the hospital! After 198 days inpatient for transplant, it was such an emotional moment that we all embraced.
The same day late at night we received the results from his bone marrow biopsy done this week: NO DETECTABLE disease, MRD is still negative!
We are so overwhelmed with all the news and changes, and with all the routines we need to keep doing in the home setting. It's been busy as it's never been.
We will still go several times a week to the clinic for regular monitoring, iv medications, therapies, consultations, and blood tests as long as he is on immunosuppressors (which will be for a few more months).
We would like to thank you all again for following us and being so supportive.
Also, a very big thank you to everyone who participated to Nikita's Art auction. It has been a lot of fun, and such a success. We will put together many treats and gifts for all the staff in hospital involved with Nikita's care. And we will organise a BBQ in the park for a mini celebration. Melbourne friends, stay tuned :)
Please take care.
With love,
NNN
Update
03 Apr 2021
Special Announcement.
For the very first time in his whole life, the last BMA results show that Nikita's bone marrow is Disease-Free !!!
So many emotions right now.
It almost feels surreal.
This is the most beautiful and incredible relief in all times.
Bone marrow aspirates will still be done for many more months to monitor his marrow's health.
We are still admitted in hospital, Nikita cannot leave his room yet - 160 days in today! Still dealing with the complications that followed the transplant. But Nikita is looking good overall. We are in the process of weaning the drugs very slowly to allow a good rehabilitation, and the new marrow to become fully functioning.
Nikita is fighting a cold virus that seems to have spread in the hospital this month ?
And we are managing as we can his tummy's pain and symptoms.
We will send updates shortly.
For now, we are so happy to share with all of you this amazing news. And we hope this will bring joy, hope, and love to you.
Thank you for being here.
With love,
NNN
Update
27 Feb 2021
Dear friends, dear bright stars in our skies,
Nikita is looking good, very playful, happy, learning more and more, so keen to discover, and interact with people around him. However, the past month wasn't all easy unfortunately.
We had a panic moment about 10 days ago when Nikita's blood all drop drastically which can be a sign of disease coming back. It can also be a sign of infection, but no other symptoms helped make a diagnosis.
His guts started not doing well again. He sparked a fever at two occasions. Multiple tests have been run to screen for virus, fungal or bacterial infections, nothing has been found. Even being very isolated and extremely cautious, the long term immunosuppressors can cause unbalance of flora and generate an invasion of some bacteria/fungi, that in a normal set up are inoffensive, but when disturbed by medications, can become so dangerous.
Another intense event has been the replacement of his central venous catheter that has broken again. Although the procedure is quite straightforward (would say the surgeon), it comes always with risks, and the immense pain of leaving your child in hands of unknown people for a time that feels like an eternity. Nikita went to theatre so many times, and we think that the habit makes it easier, but, still, every single time, it is one of the most heartbreaking sensation, and I have to retain my tears each occasion. Can't help.
This week again, Nikita went to theatre, this time for another bone marrow biopsy. Results arrived yesterday night. They are not negative as we hoped, but even lower than last time (detected inferior to 0.00005 on one marker, one of 3 replicates). Which is a good result, but gosh, this disease is so tenacious!
Still so many worries and mysteries, so many waits and ups. We stay patient, and embrace the moments of joys. His laugh, his smiles, his voice, his signs, his resilience, his hugs, everything of him is a gift to us. He taught us so much. Love, resilience, hope, happiness. We treasure being parents. And parents of such a kind human being.
At bed time we talk to him about every little things we would do when we will be out. Last night, we imagine ourselves, looking at the stars, observing them shining in the darkness of the night, contemplating a fire peacefully. Touching leaves, trees, sand, soil, stones. Feeling the wind blowing in our face, the warmth of the sun, and drops of the rain on our skin. Making friends, walking holding hands. Simple beauty of living.
Enjoy the easy and joyful moments, and keep them close to your heart, so they will keep you warm always, and make you smile when you need.
With love,
Nina, Nacho & Nikita
Update
04 Jan 2021
Happy new year to each and everyone of you! May 2021 bring us health, joy and love.
We are full of hope for Nikita's recovery and cure in 2021. He is looking bright and happy this week. Spending lots of play time and quiet time, with big smiles. He also relearned to eat and drink in less than a day, and he's loving it! All his clinical observations are looking good! We are so impressed with his resilience, positivity and strength.
His last biopsy still show disease but this time the levels were so low they couldn't quantify it. Not the best results but a very positive result. Now that the previous symptoms from GVHD have settled -still at high risk of starting again tough- the doctors are more confident starting to wean the immunosuppresors to let the new cells do the greatest job. We are so grateful for everything they have been doing here and understand the complexity of finding the right balance in treatments to eradicate the disease but also managing all the counter effects of treatments that are life-threatening too. The hospital team has also accommodated families in the ward to spend some quality times during the Christmas period, and the good energy the nurses brought into the room has made the whole period so much nicer than expected.
Although we believe we are getting close to being discharged and out in the 'outside world', it's impossible for us to picture the end. The whole process feels never-ending, and uncertainty governs our world. Celebrating the new year helped us somehow turn a page for a new clean one. We hope all to be written on that new page will be peaceful and happy, and wish this for every new page you all have turned !
Take care dear friends,
With love,
NNN
Update
29 Dec 2020
Dear friends and supporters,
We hope you all had a nice Christmas and holiday break. We had a beautiful time thanks to everyone helping making a traditionally happy and important family time very special despite the circumstances. Photo os of our Christmas day ?. Best present of all, Nikita is recovering very well, it has been and still is a very slow process, but it brings us so much joy to see him feeling better and gaining energy. Lots more play times and laugh, and demanding cries too! Which can be so tiring, but again, very reassuring!
Today we are doing the day60 aspirate of his bone marrow. As always, this is highly stressful. Depending on the results, we will discuss the next plan.
We still managed to wean some immunosuppressors, just a tiny bit. And Nikita is now drinking/eating again, which is SO BEAUTIFUL! He is definitely getting hungry, but we have to restrict the amount of intake his guts would process, as we are all so worried to not go back to where he's been.
Slow but safe, we are confident he is in the right direction to full recovery and we keep hoping and praying for the cure.
We love you all and wish to meet you soon.
Please take care and stay safe.
Love,
NNN
Update
14 Dec 2020
Dear friends and family,
Today we celebrated Nikita's 16th month!
He is slowly recovering from the busyness and suffering of the most recent weeks.
We see signs of improvement and more and more smiles which is so reasurring and also heartwarming.
He is still not himself, being very weak, and everything seems quite hard and almost painful for him, but seeing him trying and moving, and interested, is a huge progress!
The treatments started for his gut gvhd seem to be working well. We are beginning to wean some immunosuppressors as part of his transplant therapy plan. Still no food or drink at all to give a complete rest to his guts, and still on a good amount of morphine (but slowly reducing the rate) to manage the pain. At least now Nikita had a few really good sleep (it didn't happen for so long). He is slowly regaining trust from the staff as the series of traumatic events have made him hypervigilant lately.
We had long discussions with the doctors about the complexity of finding the right balance so the new cells attack the rest of his Leukemia but not his beautiful organs. So we kept some meds to keep protecting him, but wean others to give room for the new cells to eradicate the disease.
We understand it may take a very long time to a healthy and thriving body! But we know Nikita is the most resilient and we will all stay strong, patient AND positive ??
Thank you form the bottom of our hearts for all recent messages, prayers, attentions, meals that have been made with love and delivered to us, and donations, we truely feel so lucky and grateful for all your support which fills our hearts with hope and strength. Thank you for your help.
With love,
NNN
Update
07 Dec 2020
On Friday evening we received the results of the biopsy performed on Monday.
The MRD (minimal residual desease) is positive still. This means that the leukemia is still present in Nikita's bone marrow. The levels are much lower than before, which gives the doctors and us hope that this can be controlled and reduced to zero.
Once again, this is not the result we were expecting, but it is not uncommon to see "some" disease at this stage after transplant, and there's room to try to help the new bone marrow to battle the leukemia that is left and achieve the cure.
The symptoms of GVHD have improved but Nikita is still with diarrhea and not feeding. We hope that by the end of this week he will be able to start eating something.
It is a bittersweet feeling. Again, facing the reality of how difficult this disease is and how much more we need to deal with. As long as the doctors are optimistic we will be.
Love
NNN
Update
04 Dec 2020
Our baby love hasn't been himself in the past week. The GVHD symptoms got worst everyday with constant vomiting and severe diorrhea. He has drastically lost weigh and fluid (dehydration), along with energy and will to play. In addition to all that, he had fever last night, and now needs to isolate with Nacho in the hospital room. We try so hard to make him smile and laugh. He does respond with shy smiles, but you can tell it takes lots of efforts.
In two days, he had several procedures under anesthesia, and biopsies have been taken from different parts of his body.
We had confirmation yesterday that he is suffering high grade gut gvhd (his new/donor cells are attacking the lining of his guts). The pain is said to be unbearable. Lucky we can offer him morphine continuously.
We are still waiting for the results to know if the new cells have managed to destroy any leftover Leukemia.
The anxiety is high.
And my dear mum survived quarantine and arrived this week - it was hard to welcome her the way we wished- but we are so happy she is here with us, and Nikita is already finding confort in her arms full of love for him. As we do too.
We will be sending updates very soon, with hopefully good/better news. In the meantime, please take care of yourself, and as the end of the year approaches, please remind yourself to enjoy the precious time with your loved ones, and every single thing that makes you smile.
With love,
NNN
DONATIONS342
Aude Biojoux
Tue, 22 Jun 2021
$ 150
Love to Nikita, Nina and Nacho!
Love to Nikita, Nina and Nacho!
$ 150
Anonymous
Fri, 4 Jun 2021
$ 100
$ 100
Laure Chesneau
Sat, 8 May 2021
$ 50
All my love for the three of you!
All my love for the three of you!
$ 50
Anonymous
Fri, 23 Apr 2021
$ 20
You guys are real superheros
You guys are real superheros
$ 20
Roy Alex Sills
Sun, 18 Apr 2021
$ 100
A seguir dandole para adelante!! Lo dije antes y lo sostengo: son una gran inspiracion. Les deseo lo mejor. Muchos carinos para los 3
A seguir dandole para adelante!! Lo dije antes y lo sostengo: son una gran inspiracion. Les deseo lo mejor. Muchos carinos para los 3
$ 100
Erin
Sun, 4 Apr 2021
$ 200
So happy to hear you've had some good news! Wishing you all the best going forward xx
So happy to hear you've had some good news! Wishing you all the best going forward xx
$ 200
Anonymous
Mon, 1 Mar 2021
$ 100
$ 100