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Help Roimata fight Cancer of the Nerve Cells (Nueroblastoma)

  • 21st May 6 Weeks post transplant

      24 May 2024

    This is the 6th week. Had a blood transfusion yesterday and her white cells have dropped again, below 1 but it looks like we can go home Thursday, mostly for Roimatas mental health as she is struggling. We have to be back on Sunday for tests. Hopefully will just be 1-2 nights, then should be able to go back to Hamilton until the 9th June, then the second transplant. It has been extremely difficult. Roimata is still struggling, she can barely walk, talk and is vomiting a few times a day, constant nausea and just sick of it all. I have no idea how we are going to get through this next step. Due to the shared care, everything is just so much harder as the funding only covers 1 parent at a time so every Thur/Fri I have no support or funding. have to try and figure it all out, every week. Just another stress and hard to sort as my main priority is Roimata. Not asking for help, just venting. The next Transplant is going to be so, so bad.

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    • 24/05/2024 by Emily

      This has been a gruelling read. My heart hurts for you. I just so hope and pray Roimata kicks cancer’s butt. You are doing such an amazing job xxx

  • 12th May Mothers Day

      24 May 2024

    Roimata was admitted into hospital Thursday with a low grade temp, after her platelets transfusion. We just got out of the ward, this morning and are now back at Ronald McDonald. She is not actually Discharged yet as she is considered, on leave, due to the likelihood of being readmitted at any given time. Hopefully we will stay out. Meeting tomorrow to assess how her recovery is going. After transplant her White cells drop to 0, which is why she is, extremely high risk of infection. We are currently at 1.7 so at least there are some. Not sure what the magic number for getting home but we are far from what it needs to be to keep her safe. She is on track though, can take weeks for it to be high enough to be out of the danger zone. She takes 7 meds a day, 3X a day, plus her NG (feeding tube) tube gets changed every 6 hours, its a tough slog. She is verbally talking every now and then, mostly when she has to snap at someone ... sassy little thing. It is almost a month of staying in the hospital, aside from 2 nights we stayed at Ronald McDonald ... very tough.

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  • 06 May

      24 May 2024

    Wow, what a roller coaster. Roimata has improved, a lot, so we are hopefully getting overnight leave. We will, if we can get a room, be staying at Ronald McDonald and then getting discharged, if all goes well. She was quite depressed, as she is absolutely dreading and refusing to go through all of this again, when I came back Saturday night but we had a night of games , singing, and laughter and she is a lot happier. If tonight goes well, we can be discharged from hospital and stay at Ronald McDonald for the next 1-2 weeks before we start on the second part of our journey. Hopefully a bit of time at home too.

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  • 28th April

      24 May 2024

    They told us, once she starts getting some white blood cells back (they are completely gone after transplant) her healing will go super fast. We got news a day ago that they were back and they just keep getting stronger. She is a week or two ahead of schedule. I think it is because we had such a good harvest, they could transplant millions more cells than normal. As long as things go well this week, we will head home at the end of this week. Fingers crossed nothing goes wrong. This will mean that she can have a week or two at home, before the next one. We just have to get control of the bleeding (had to have a platelets transfusion and blood transfusion early this morning, as well as her neutrophils (fights infection) and her feeding back onto her feeding tube (currently getting IV nutrients) we are set!! Saying that though, she is still completely miserable and we had a bit of a tricky night. She is on a morphine pain pump where she presses it herself and also IV tramadol, Panadol and has a 24/7 Ketamine drip. She also has a stomach bug, which she is on antibiotics for but ..... apparently the healing will go miraculously fast in the next day or two.

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  • 25th April

      24 May 2024

    Am exhausted. So many bad nights, my poor baby girl. Still cant talk because of all the bleeding sores in mouth, throat and stomach. Constant leaking of glue like substance filled with blood. Constant nausea. Lots of pain pump usage. Diarrhea and because she is on frusemide, constant peeing. She goes every 3 hours and takes 1 hour each time because her skin is all cracked and broken so is in pain and due to nausea. She is sleeping a lot due to all the meds being pumped into her. She has a temperature this morning so she has another infection, this will be her 3rd. Have trained the nurses how to deal with her in the bathroom but she is so upset that I am not able to stay and do it for her. She so badly wanted me to stay. Needs ointment in all her cracks and does not want the nurse or her father to do it, I just hope that it does not get worse in the 2 nights I am separated from her. Just showered, staring on all the washing I have (Roimata had to change several times a day due to gunk coming out her mouth) then do some grocery shopping, food and sleep. Been sleeping on a chair next to her bed as there is no point, due to getting up every couple of hours. Exhausted!

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  • 20th April

      24 May 2024

    Slight temp so they put her on antibiotics, she is having an allergic reaction to the antibiotics but she needs to stay on them, they are giving her antihistamines, she had a reaction to the antihistamines, it is causing her skin to itch but she has to stay on them. Her mucusitis is worse and she is now throwing up blood. They say it is from the sores in her stomach, throat and mouth. Still not able to talk as it hurts and her mouth is full of gunk. Her pain pump is working well, all kids who go through this get put on a pump as the pain is quite bad. She is more alert now, just finished reading her a book (for 3 hours) The aftermath of the transplant has only just begun. Still has a fever, pain, her BP is slightly low, Heart rate is fast, and her oxygen levels dropped to 84 so needed oxygen and is now averaging 94. Have had Drs coming and going all night just to monitor and just had a visit from PICU (Pediatric Intensive Care Unit) to assess. Another DR visit in about an hour. Just to check on her as all her stats are on the cusp, not enough for treatment but in need of constant monitoring. Has had 2 platelet transfusions already as she has been vomiting blood and had a nose bleed. They are re checking her bloods soon as she may need another. With low platelets, they are unable to stop bleeding and the sores in her stomach, throat and mouth are bleeding. Long night ahead.

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  • 19th April Transplant #1

      24 May 2024
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    Such a small bag. Transplant went well. No immediate side effects. She is pretty out of it and not really awake. She did not want me to leave, but I had no choice. Biggest risk now, infection. They said no matter what, she will get one in a day or two, its about how well we can deal with it. Get to be with her tomorrow night but I won't get much sleep tonight.

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  • 16th April

      24 May 2024

    Bad night last night, think I finally made it into bed at 6am. Roimata is now on multiple pain meds as well as a morphine drip with a button she can press every 5 mins. She has developed Mucositis, very painful. Her face and lips are very swollen, mouth throat and stomach swollen and full of phlegm. Vomiting every hour or so. She still throws me a smile every now and then but she is getting so tired. 1 more day of this chemo .... then a rest day.

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  • 15th April

      24 May 2024

    Having a bad day today, the change of chemo yesterday has finally hit. Also needs a blood transfusion and is starting to swell with excess fluid and is feeling miserable so has been in tears all of today.

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  • 14th April

      24 May 2024

    Day 3 of chemo. 3 days to go. Roimata has been doing great. Very little vomiting, only 3 times today. Her food tube has remained in, which is great. Only has to shower 3 times a day as she has not been sweaty. She has a rest day on Thursday and then the big day. Her transplant will be Friday. We will have a team etc. on hand to watch over her in case of immediate reaction then a few days of constant monitoring. I will insist on being there, all day if I have to. Even the devil himself could not keep me away.

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  • 04th April

      24 May 2024

    Some abnormalities still showing in her Echo-cardiogram. Will need to leave Wednesday so they can do another Echo Thursday. Roimata will have a high dose of chemo for 5 days (she has to shower, change clothes and bedding, every hour or so during those 5 days) before they do the transplant itself. Crazily enough, the transplant only takes 10 mins but the recover that takes weeks.

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  • 03rd April Puppy Play

      24 May 2024
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    Made it to Ronald McDonald house. Was a bumpy start, the Shuttle we were supposed to leave in had a flat battery so we had to wait in the van for an hour while they got a second van. Made it just in time for puppy? play!

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  • 27th march Mid Scan Results CONT

      24 May 2024

    After 5 rounds of chemotherapy - due to cancer still present we will need to up her dose. We will be doubling the amounts that were previously given - Due to high dose it will mean her blood count will drop for several months, could possibly be for life. She will need treatment for that.

    Puberty - Will need to see if she can start on her own, if not by the time she is 15 she will need to go on medication to start it - her growth will stop so she will not grow as tall as she would have.

    Stem Cell Transplant. Due to start the Sunday after next - They are planning 2 concurrent transplants. Not normally something they do. She will have 1-2 days of strong chemo (so strong she has to shower every hour or her skin will burn from the sweat she will excrete) - biggest risk will be death - next will be infection. It will take 5 weeks of 24/7 care in hospital - if she survives the first transplant she will do it all over again (heart breaking) (due to her type of cancer and how strong it is) the survival rate of 2 transplants is 10-20% - Liver is the most likely organ to be damaged, then the heart - if liver, she will need medication that is very dangerous to try to save.

    50% of children who have been treated like this will lose their hearing and or require hearing aids.

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  • 27th March Results of Mid treatment Scans

      24 May 2024

    MIBG (type of scan) - Faint signal of cancer on primary site - no sign of metastasis.

    MRI (full body scan) - Slight on primary site - x2 sites on Pelvis still showing but slight - 1 site on femur but looks slight.

    Bone Marrow aspirates - Thin needle showing no signs of cancer in the bone marrow - thick needle (better quality) still waiting on results.

    Heart scan - Right side of her heart is showing signs of beating at a slower rate. we will re do test on Thursday. Could be from medication (phosphate), could be from her being malnourished for so long or could be damage from chemotherapy. Still to confirm.

    Tumor gene sequencing - ATRX mutation confirmed. Was expecting but hard to hear. Means it will be hard to treat and has a high chance of coming back - Still waiting on Blood DNA check to see why she got this type of cancer.

    Tumor itself - showing a few spelling mistakes in her DNA, as well but they are unknown (not documented before) Will need to see blood results but this particular spelling mistake means she also has a high risk of breast cancer.

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  • 27th March

      24 May 2024

    We just got home. Today was results day 🙁 after 5 rounds of Chemo, all her tests were repeated. We have all the results except blood DNA, Thick needle bone marrow aspirate, another urine test and she needs another cardiogram Thursday. We are back on Thursday to meet the transplant team then we have 1 week off. Feeding tube is going well and she has her energy back, as well as gained some weight. Results to follow ..

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  • 25th March

      24 May 2024

    Just got back to our room, what a long day in hospital. Had heart and kidney re checks done today, had her MIBG scan last week and have her MRI scheduled for tomorrow morning. After that, she has 1 big chemo round, straight into transplant, 1 chemo round, another transplant then Radiation. next few months will be long.

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  • 16th March

      24 May 2024

    Finally managed to get Roimatas feeding tube in, after 1 failed attempt. We have been staying in the cardiology ward as there is some discrepancies in her EKG so she needs to be monitored. She has been given all kinds of vitamins, potassium, fluids and more, to help with her malnutrition. Also been put on more, different, nausea tablets, so she can actually keep something down. Still not on solids or the feeding tube but that will start today. She has taken to the tube well, thank goodness. We just have to keep her from vomiting it back up. Was a scary time but we are in good hands. Her full bodied scan MIBG was done yesterday, we should have an update on how much tumor is left and the tumors in her pelvis. Lots more scans to do over the next couple of weeks before her stem cell transplant.

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  • 13th March

      24 May 2024

    Had to go to Waikato Monday for IV fluids. Back in Starship today, Roimatas phosphate is low (basically her body is starving) her last chemo, kicked her butt. Will have to be admitted tomorrow as she will need a feeding tube but because her body is in starvation mode, she has to be slowly fed or she will get very sick. Her nutrafils are also low so has a high risk of infection. Back to Ronald Mcdonald house tonight though, so that is something.

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  • Catching up on updates

      24 May 2024

    9th March

    Back home. Had 3 night stay in hospital for this round of chemo. Also had her PEG (injection into thigh to help build her immunity) after such a strong round of chemo. Had a bag of blood and also had a meeting about the 'incident' last visit. Have tried to make a plan for inserting her feeding tube. 1 option is to put it in while she is knocked out for her MRI. fingers crossed because she is over 10kgs underweight and we only have 3 weeks to build her up before her transplant. Back to Auckland Wednesday, should be home Friday/Saturday.

    Please see further updates on the page here: https://givealittle.co.nz/cause/help-roimata-fight-kidney-cancer/updates

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  • After major Operation

      6 March 2024

    Back in Auckland for another big round of chemo. 3 day bomb. Hopefully home for the weekend, then back next week for scans, maybe a week home, then another week of scans. All the scans are to check for damage so they adjust chemo accordingly. Roimata still struggling after her op, quite sore and is still losing weight, we tried to put a feeding tube in, last week but Roimata panicked and things got bad, everyone got upset and nurses cried, was horrendous. After those few weeks, stem cell transplant. Hopefully they are just over preparing us but it sounds like it is going to be, actual hell.

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  • Pre Op

      27 January 2024

    Update and plan for the next few months: Today we started her 4th cycle. Pretty strong, 12-hour cocktail. Overnight in Starship due to starting at midday. Tomorrow, we repeat then Friday she has her PEG injection (fight infection) before returning home the same day. We will visit Waikato each week (as per usual) for platelet and or blood transfusions, if needed. We will return to Starship on the 14th of Feb for a day trip for her pre-op MRI. Hopefully the tumor has shrunk enough to operate. Her operation is booked in for the 21st of Feb where they will also re-insert her feeding tube. We will be staying in hospital for about a week. The 5th cycle will depend on how fast she can recuperate from her op, maybe within a few weeks. It is another big one, same as the previous cycle. It was bad. Then the scary part, her stem cell transplant. She will be staying in hospital for several weeks. She may end up in ICU, she will be on a 24/7 morphine drip, there is a small chance she may die. Pretty shocking to hear the words out loud. Then they re-do all her tests, heart, MRI, MIBG, Kidney biopsy, plus others, to check for damage. He also said there is a very high chance it has spread, metastasised. There looks to be a spot in her hip bone and another in her pelvis.

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  • 4th Round Begins

      23 January 2024

    Back at Ronald McDonald house for the 4th round of Chemo. Had to have platlets the first week back and blood transfuion on Friday but her blood test was good enough to leave today. Tomorrow we begin her 2 day push.

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  • Finished Cycle 3

      9 January 2024

    We got home last night. Started her chemo on Wednesday, finished Friday. Roimata was unable to eat or drink that entire time and also could not stay awake. Put a feeding tube in Saturday but also had to put her back on IV fluids as her kidneys were in distress. Roimata hates the feeding tube so refused to eat, drink or talk form Sat-Monday but thankfully she had her feeding tube and her IV fluids. Monday we convinced her to keep the tube in because if she didn't we would not be able to leave the hospital or her kidneys would fail (cannot have IV fluids at home) and she would starve herself. Had a rough night last night as she was sick a couple of times and again this morning. Is now asleep on the couch. She is talking a bit now but says it is too uncomfortable. Does not want to see anyone but gives me an occasional smile and holds my hand. I can now also rub her back and head until she is asleep, no one was allowed to touch her while we were at the hospital because she was too sick and angry that we kept the feeding tube in. It has been a very hard week. She is still not drinking fluids so we may end up at Waikato for IV fluids.

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  • Cycle 3

      3 January 2024

    Cycle 3. Left for Auckland yesterday afternoon. We are now in Starship, we have been admitted because this cycle is very high dose and a different mix. It is hard, lots of tears and begging to go home because she feels so sick, just have to get through the night and 2 more days/nights then we can go home for a bit. That is the only good part about this and the next lot of cycles, they only last 3 days plus some recovery time.

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  • Stem cell harvest and prep for cycle 3 chemo.

      27 December 2023

    Arrived back in Auckland yesterday afternoon. Now in starship waiting for a top up of Platelets, they are a little low. We have been given the go ahead for the stem cell harvest (so they can replace some, after this next cycle wipes them all out) but the machine is kept in the adult blood ward and apparently no one can get to it as there has been an incident and there are firetrucks blocking it. Hopefully the harvest goes well but we are booked in for 3 harvests, for the next 3 days, just in case they can not get enough

    Then, once her white count is high enough, we do the boost chemo cycle. It is going to be bad. We will need to be admitted the entire time, apparently they throw up and are sick the entire time so she will be hooked up to so many bags. It is going to be rough.

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    • 27/12/2023 by Claire

      Thank you for all the updates, you have been in our thoughts. Sending strength to you all for this next challenge.

  • Cycle 2 completed

      22 December 2023

    We did a hearing test. her hearing could be damaged, they will adjust the chemo so the damage is not too bad. Now things kick up a gear. 10 days of injections (into thigh) to stimulate stem cells. We go back Tuesday, do blood tests to check immunity then we do the harvest. (Stem cells are special cells produced by bone marrow.The 3 main types of blood cell they can become are: red blood cells – which carry oxygen around the body. white blood cells – which help fight infection) They are harvested now, before this next round so they are not damaged, then cycle 3 and then the stem cell transplant. We save 1 for a later cycle and then 1 for backup. This cycle is the big one so we will be admitted into hospital the entire round as Roimata will be very sick. Then maybe (might be after the 4th cycle) we can do her main operation. Have to re do all her scans first to check if it has shrunk enough. I called in the dietitian for advice, there was a possibility Roimata may have to have a feeding tube. She weighs 42-43 kgs. She should be 49kgs (due to her height) We will wait until the 27th to maintain her weight and then make the final decision. Her fluids are down so we have been told to give energy drinks (they have isotopes which are similar to blood) do not want her kidneys to fail but we are having to harass her constantly to drink. It is not pleasant for anyone. Not looking forward to this round.

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  • Wig time

      8 December 2023
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    Roimatas hair all fell out within 2 days. heartbreaking, Thanks to Haircreations Cambridge. Pinned back at the moment. Roimata wanted to go a little darker. Beautiful.

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    • 08/12/2023 by Claire

      Absolutely beautiful, inside and out. We miss you at school, but know you are in the best place and getting the best care. Lots of love darling girl x

  • Second cycle

      6 December 2023

    Just an update. We will be leaving for Starship and the Ronald McDonald house on the 14th December and will be home the 30th-31st December. It means we will be there for Christmas. It's not what we wanted but apparently Christmas at Startship is pretty cool. Not that it really matters but it also means, not just my birthday but Ashleys is also during that time. We are going to look at wigs, tomorrow morning, hopefully we can get one sorted before we leave as there is very little hair remaining and Roimata is very self-conscious.

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  • Home from Waikato after infection

      4 December 2023

    We are home. Still not sure what type of infection, all bloods and swabs came back clear. Platelets a little high (should be under 20) sitting at 24. Will reassess Thursday and just have to keep an eye out for bruising and bleeding.) Neutrophil Count (low means high risk of infections and what they have to count instead of white blood cells for chemotherapy patients) is sitting at 0.57 (normal count is 1.5 - 8.0) if it was lower we would not have been allowed home. White blood count is low but it is normally 0 after chemo. The 2 weeks break from chemo is so her white cells have time to increase before the next round of chemo. Roimatas is sitting at 1.22. Still not 100% confirmed the start of her next round of Chemo (at Starship), hopefully this infection does not push it back but looks like it will start Monday.

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    • 08/12/2023 by Nicky Williams

      Edit: Platelets a little low (should be over 20) sitting at 24

  • Waikato Hospital

      30 November 2023

    Had to rush Roimata up to hospital this morning 8.00am. High temp, nausea and feeling unwell. Has an infection somewhere, not sure where from or if we will ever know. We have been so careful but who knows. Have to stay at least 2 days at Waikato hospital, more if her blood tests show infection in the blood. We got 4 days at home, so that is something. Now resting in the 'bubble room'.

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  • Almost time

      25 November 2023
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    Last day of Chemo (back in 2 weeks). 1 injection tomorrow for white blood cells, then home for 2 weeks. Will go shopping for carpet cleaner, steam cleaner, rail shower (if landlord agrees) she can't get her internal line cover wet, bit hard to keep dry with an inbuilt wall shower then clean, clean, clean. Am soo looking forward to being at home with Joe and the cat, and my own bedroom. Home schooling sorted for next year.

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    • 30/11/2023 by Camilla

      We all miss you at school Roimata! We wish you a fast recovery.

  • Update and first day of Chemo

      21 November 2023

    Update

    Last week.

    Tuesday Roimata had bloods taken.

    Wednesday, we had an injection (radioactive iodine) to protect Roimatas thyroid. It was flown in from Japan in a lead bottle. Very extravagant.

    Thursday, Roimata had the MIBG scan (MIBG (meta-iodobenzylguanidine) is a molecule that doctors combine with low-dose radioactive iodine to look for neuroblastoma).

    Saturday we had a visit From big brother Joe and uncle Dave, much needed. Went for a quick, late lunch and got stuck in Westfield carpark for 2 hours.

    This week.

    Monday we had our full bodied MRI then junk food night!

    Today we did an Echocardiogram to have a reference to look back on in 5 years to check for heart damage.

    Then we started out Chemo treatment.

    Day1. 2 hours of fluids. 1hr of chemo. 2 hrs of fluids and nausea meds.

    Bone biopsy came back ok but in one of the scans it showed some unexplained areas maybe of concern in pelvis. Will check after round 2 of chemo when all scans will be repeated.

    This coming Friday, all the DRs and Specialists will meet to talk about MIBG, MRI scans and then we will know if there is any spread, finally.

    Everything is moving so fast, no time to think/ponder/worry.

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  • Thank you

      18 November 2023
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    Thank you everyone for the kinds words, they mean a lot to us. Also for the support and sharing the link through the 'Give a Little' page, every cent will be put to good use, petrol parking, food (everything cost so much in Auckland), any supplies we need for ensuring my house is kept sanitised and supplies for when she begins her homeschooling (Roimatas chemotherapy is going to be so intense she will not be allowed to go to school, even for visits) but most importantly Roimatas wig. We finally get to have a visit from Roimatas big brother Joe, she is missing him so much. A weekend of relaxation so Roimatas body can heal before her first chemo treatment.

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  • Almost treatment time

      14 November 2023

    Update. We got most of the results today. The news was worse than I could have imagined. Roimatas cancer is high risk which means the treatment will be shockingly strong. Tomorrow we will be removing one of Roimatas ovaries to freeze because there will be little left after her treatment, it is experimental and the government has only agreed to pay for another couple of years but we may be able to put the ovary back later in her life. She will also have to go on hormone treatment so she can go through puberty. We start chemo on Tuesday. We will be back in Hamilton in a week or 3 and will travel to Auckland every other week for chemo. She will have her main operation in several weeks, they assume they will not remove it all. Chances of survival for this type of cancer is below 50%.

    Plan A is a 14 month chemo cocktail plus radiation and some other stuff for treatment. Plan B is that plus something even more invasive. I cried for the first time today.

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  • 2nd surgery

      10 November 2023

    Yesterday Roimata had her 2nd surgery under general anesthesia for 2 bone marrow biopsies. She is still very sore but luckily we have a day or two off before more tests/operations. We are hoping to get her MRI in on Monday. On Tuesday, Roimata will have Lugol's Iodine injected to protect her thyroid before the next procedure. Wednesday she will have her IV line inserted. Thursday she will undergo a MIBG scan (a nuclear imaging test) all of these tests are to find out how much it has spread, where it has spread. I want to thank those who have supported us so far. I didn't realise how much of a toll, being away from home, could take, not just financially but mentally and physically. We still have to sort logistics for when we come home to continue her treatment, including reliable transport as I have been newly diagnosed with Epilepsy and am unable to drive.

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  • Day 4

      8 November 2023

    Yesterday, Roimata had surgery 1, under general anesthesic to biopsy the tumor. Today we have preliminary results which confirm that Roimata has a cancerous (possibly high risk) neuroblastoma. We now have to undergo a multitude of tests to check for spread and to stage her cancer. This is to see how much chemotherapy she will need before her surgery. Tomorrow Roimata will have a second surgery, under general anesthetic to biopsy her bone marrow (check for bone spread). We should know even more, once those results come back. Roimata loves Ronald Mcdonald house and plays with many of the children but does tire easy. We still don't know if we will stay here for the entire duration or come and go from Hamilton.

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  • Made it to Starship/Ronald Mcdonald house

      6 November 2023

    Finally settled into Ronald McDonald's house. Night 1 and it was lovely, an amazing place. Roimata had her first surgery , general anesthetic for her kidney biopsy. Still very sore. Waiting on the results. Thank you EVERYONE for all your donations. Every little bit helps. Thank you.

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  • Day 1

      2 November 2023

    We are leaving for Starship Hospital today for the start of My little girls treatment. There is just the 1 Tumor but it was so large they assumed it was 2. We will be doing a tumor biopsy as well as a bone marrow biopsy as there is some suspicion it may have spread to the bone. They will also add a central line so she can start her chemotherapy before her operation.

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