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Fundraising for Toby Robins

  • January 2019 update

      27 January 2019
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    Toby fought bravely for 11 months but in the end the cancer was just too aggressive and our beautiful boy passed away on Wednesday January 9th 2019.

    The support from this give a little page meant that our family could stay together for the 3 months that Toby received treatment in Seattle, and we could then remain together (family dog included) for Toby’s last 6 weeks in CHOC on our return to New Zealand.

    We were able to create so many magical, special moments with family and friends and these are now, more than ever, priceless. We are so grateful for your generosity that enabled us as a family to be together to create them.

    We were also able to fully honour Toby’s wishes for his cremation and his celebration of life.

    Toby’s words he wanted us to remember were ‘don’t be sad because I’m gone, be happy that I was here’.

    Right now it’s hard to find happiness when we’re hurting so much from saying goodbye to our brave, kind, amazing child, but those words are a gift and inspire us to live a life he would have been proud of.

    Thank you all so much for being a part of Toby’s journey XX

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    • 28/01/2019 by Sarah

      Lisa & Family

      We are so so sorry to hear of Tobys passing. There are no words to try and ease the pain you will be feeling.

      We are thankful that you were all able to spend so much time with Toby and we send you much love and heartfelt wishes of strength.

      Kind Regards - Sarah C

  • December update

      13 December 2018
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    I know lots of you are wondering how Toby is doing back in NZ. We are still in CHOC, and a CT scan showed that some of the lymphoma has started to get bigger again. We are taking things one day at a time and focusing on creating some magical moments in every day.

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    • 13/12/2018 by Amy

      Thinking of you all and sending lots of love xox

  • Back in NZ

      2 December 2018

    Home (CHOC)!

    Words can’t really describe how amazing it is to be back in New Zealand with Toby and how grateful we are to Seattle Children’s Hospital for the CAR T therapy and amazing care of Toby and then organising at the earliest possible opportunity for Toby to come home. It was an epic journey!

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    • 02/12/2018 by Melissa

      Welcome back Robins Family! Fantastic to hear that Toby is close to home. How is the situation Lymphoma wise? My daughter is in Toby's class at school and often talks about him xx

    • 02/12/2018 by Denise Roberts

      Such amazing news! I have been thinking of Toby and his family and hoping for the miracle that they needed from their trip to Seattle. I hope Toby continues to improve. Well done to all. A hugely traumatic time for you. Healing Thoughts and hugs to you. xx

  • Homeward bound

      2 December 2018
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    In a fairly last minute turn of events we found out on Monday that Toby is being flown back to NZ via air ambulance this afternoon (Wednesday). He still requires a pretty high level of medical care so are transferring straight to CHOC, not quite home but pretty close.

    Ben, Felix and Oliver are flying back to Dunedin tomorrow, arriving Saturday morning.

    We are soooooo thrilled to be all heading back to NZ!

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  • Oct / Nov update

      5 November 2018

    10 days ago a CT scan showed that the lymphoma was aggressively growing and spreading again. The CAR T cells, while present, were not able to stop the progression. Toby was moved back into the ICU after only 2 nights back on the ward.

    The immunotherapy team gave him one last drug that could potentially boost the efficacy of the T cells. It was a very tough time for the family and Ben’s mum and brother came over to join them and Carolyn’s parents.

    2 days ago however, seemingly against all odds, Toby took his oxygen off and has been breathing without support since! He remains critically ill in the ICU but is showing signs of improvement. We are cautiously optimistic as to what this might mean.

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  • T cells

      18 October 2018

    Toby had his CAR T cells infused last Friday, 12 October. The lymphoma had been progressing rapidly and he had radiation the day before to try and slow things down. Everyone is doing their best to keep him comfortable and he was stable over the last couple of days. Today is day 5 post infusion and he is not quite as well as he was yesterday which may be the start of the immune response and the CAR T cells starting to work.

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  • End of Sept update

      26 September 2018
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    Our last week has had some ups and downs, Toby was admitted into hospital on Saturday night with a fever, and although he’s feeling a bit better he needs to stay inpatient until he’s no longer neutropenic and is a bit more comfortable. We hope to find out later this week how his cells are doing and maybe get a timeframe for when they might be re-infused.

    Toby’s still managing to narrowly avoid getting an NG tube, but his weight gain is being closely monitored.

    He had a visit today from Russell Wilson, (the Seahawk’s quarterback) and his wife Ciara! Thanks Dean and the Chemo Crazies for setting that up!

    Thanks again to everyone out there who has helped out - so many amazing fundraisers and donations and we are so incredibly appreciative of everything everyone has done.

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  • The plan so far

      14 September 2018
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    Toby had a tough weekend feeling sore and sick, which was pretty worrying. The doctors on Monday felt it was best to just push on and stick to the timeframe of putting the line in on Wednesday then taking the cells on Thursday and chemotherapy starting on Friday rather than starting any treatment which would delay the process by weeks while he recovered enough for T cell extraction. We definitely agreed, and Toby actually ended up feeling a bit better over the last couple of days and we managed a trip to the Chittenden Locks and salmon ladder yesterday!

    We have just enrolled Felix and Oliver into a local school here (much to Oliver’s excitement and Felix’s disgust 😂) they might be able to start in a week or so!

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  • Arrival in the US

      11 September 2018
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    It’s now a week since we arrived in Seattle and things are starting to feel more familiar. Toby’s had a lot of preliminary appointments at Seattle Children’s Hospital and the team that are looking after him are amazing and very reassuring that Toby is in a good position to receive the CAR T therapy.

    In between appointments last week Toby was feeling really good so we made the most of it and the beautiful warm weather and managed to get out kayaking, visiting the zoo and exploring the city. Felix and Oliver are loving having Aunty Phae with us so instead of hanging around the hospital when Toby has appointments they have been able to visit playgrounds and check out all that Ronald McDonald House Seattle has to offer, like the air hockey and pool tables!

    Toby is having an apheresis line put in on Wednesday, his T cells drawn out on Thursday, then it’s 3-6 weeks for his cells to be prepared.

    Toby started to feel quite sore over the weekend, and will start chemotherapy on Friday once his T cells have been taken.

    Thanks again to everyone who has continued to so generously support Toby and our family - we are extremely grateful.

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  • Off to Seattle!!

      3 September 2018
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    There was some good news over the weekend, Toby was deemed fit to fly! Toby and Carolyn are flying to Seattle tonight, with Ben and the boys following tomorrow.

    Toby's first appointment at the Seattle Children's Hospital is on Wednesday morning. We are all hoping for the best. Thank you again for everyone's support.

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  • Good news

      3 September 2018
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    ****UPDATE FROM THE FAMILY****

    "It's been a roller coaster week. Toby's scan on Monday showed progression on all sites which meant he was no longer eligible for CAR T-cell therapy at the NIH. It was a tough couple of days waiting to hear back from a couple of other places but, thanks to a lot of hard work from Toby's oncologist, he has been accepted by Seattle Children's Hospital for the same treatment, but self funded. He needs to be well enough to travel so is undergoing 4 days or radiation therapy to try and shrink the tumours. The cost of Toby's treatment is extremely high and we are incredibly grateful to family, friends and supporters who are making this possible for Toby."

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