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Friends of Gabrielle

  • Transplant Date!

      6 July 2015
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    We now have a date for travelling to Starship for the bone marrow transplant. We leave Nelson on Wednesday 15 July.

    Then...

    Thursday - surgery for Hickman line to go in. (Hickman line is a central venous catheter used for the administration of chemotherapy or other medications, as well as for the withdrawal of blood for analysis).

    Friday - back to Starship for them to check the the Hickman.

    Saturday & Sunday - some time to do some sight-seeing.

    Monday - back to Starship where she will be admitted for the long stay and chemo will start. About 1 week of chemo then the bone marrow transplant (BMT).

    We are very relieved to finally have some certainty of what is happening next. While it is going to be a long road and very unpleasant road ahead, it is necessary and unavoidable.

    Gabby celebrated her 5th birthday last week and has absolutely LOVED her first week of school!

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  • MRI on Friday

      6 May 2015

    This Friday Gabby will be having an MRI of her brain. We have been told that this is essentially to have a baseline to compare future MRIs to. They will be examining her brain structure and looking at her cerebellum to see how developed it is. An underdeveloped cerebellum can be the cause of balance and coordination problems, as well as learning difficulties and speech problems. Gabby certainly has no troubles that are apparent on the coordination or balance side of things, and she is progressing at the same rate as her peers with her learning and development so they don't have any immediate concerns at this stage. Although her speech is a bit delayed and not quite as clear as you would expect for a child who is only a few weeks off 5 years old, so we might get some answers around that.

    So at 7.30am on Friday we head up to the Children's Ward at Nelson hospital. She will go under a general anesthetic for the procedure. Hopefully we will be home in time for the school pick up.

    We had a phonecall from her Oncologist/Haemotologist last week. They are also continuing with their research and investigations, particularly around the genetic testing. We understand that this is mostly to gain a better understanding of Gabby's DC condition and how things might unfold in future. The transplant is still on track for June, however we don't have a date yet.

    At the moment Gabby is having a really good run (touchwood!). She has been well, and her bloods have remained stable (for her) and she has been enjoying being back at kindy after the holidays.

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  • Another diagnosis

      18 February 2015
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    A couple of weeks ago we had a video conference with our oncologist and we found out that we have a bit more on our plate than we initially thought. The tests done in Canada have revealed that Gabrielle has Dyskeratosis Congenita. (if you want to read up on it read Wikipedia. The Aplastic Anemia that was diagonosed initially is just one of the many symptoms. Basically this is more serious than first thought. There is no cure for Dyskeratosis Congenita - it is a chromesome abnormality. It is a very rare disorder (1:million). And we have been told she is one of only three in NZ who have been diagonosed with this.

    So what does it mean? It is a rare progressive congenital disorder Some of the affects are abnormal skin pigmentation, abnormal finger and toe nails (Gabby's are already in poor condition), and a predispostion to some cancers (specifically: cervical, skin and oral). Some of the manifestations resemble premature aging. The disease initially mainly affects the skin, but a major consequence is progressive bone marrow failure. It is life threatening.

    So quite a lot to take in and we are still digesting it all. At this stage a bone marrow transplant won't take place during the first half of the year. They want to make sure they have "all the ducks lined up" before proceeding as a transplant will be more complicated than first thought. There is no magic fix and it is something that will need to be managed and carefully monitored for the rest of her life.

    Last week we all went to Christchurch for further tests. Gabby ended up in hospital there with a cold virus. Our other children, Ruby and Lachlan have also been tested for DC as if Lachlan has any abnormalities this will compromise his ability to be the bone marrow donor. This new diagnosis has been a bit of a game changer as it does add more risk to the bone marrow transplant.

    Thank you all as always for all your messages of support. It means a lot to us and we do read them all.

    Megan & Andrew x

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  • We have a donor....

      5 January 2015
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    Hi everyone

    On New Years Eve we received a call to say that Lachlan(Gabby's older brother) is a match and a suitable bone marrow donor. This is really good news as a sibling donor increases the chances of the transplant being a success. It also reduces the amount of time that Gabby needs to be kept in Auckland to approximately three months.

    At this stage we don't know when the transplant will take place, but a referral has been sent to Auckland and the wheels are in motion.

    Last week Gabby's blood test revealed that she had become neutropenic which makes her much more prone to getting sick. She became unwell on New Years Day with a headache and high temp so we took her up to be checked out and were admitted overnight and started on antibiotics immediately. Her veins are pretty hard to find so it took 6 attempts to get the IV line in. We were allowed to go home the next morning and we had a nice drive to Mapua for an icecream and fish and chips. Then back home and up to the hospital for another dose of antibiotics but she was allowed to come home to sleep. We had to go back the next day at lunchtime for another blood test, and this one showed that her platelets had dropped so she was given a platelet transfusion then allowed to go home again (after being up there for 5 hours).

    We have had a nice couple of days enjoying the beautiful summer. She has her weekly blood test tomorrow so hopefully that is all 'normal' so we can keep enjoying our summer holidays.

    Megan & Andrew

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  • Update from Megan & Andrew

      30 December 2014

    Hi everyone.

    Firstly we want to say a HUGE thank you to Stephen and Sandra for starting this page for Gabby. They did this off their own back and the response and generousity from you all has been overwhelming to say the least. While we have given to several different Givealittle causes before, we never imagined that we would ever be on the receiving end of something like this. And secondly we want to say VERY BIG THANK YOU to all of you who have donated - we have been overwhelmed and humbled by it all.

    We have had a wonderful family Christmas and are enjoying time off work with the kids.

    Gabby's weekly blood tests have been fairly uneventful and she has taken it all in her stride. We recently had a couple of nights in Nelson Hospital. Gabby got croup on Friday 12 December which resulted in an overnight stay and then on Monday 15 December she had high temps so we had another night in hospital for observation. She quite enjoys these 'sleepovers' believe it or not. I think she likes being treated like a princess by the nurses and having us all at her beck and call! She had her weekly blood test today and her bloods are generally holding their own. However her neutrophils were very low (0.9) which means that she has very low immunity and her body would struggle to fight infection. So to this end we just need to be extra vigilent about keeping her away from anyone with bugs.

    We are still waiting for the results of all of her tests that were taken in Christchurch. There is a test being done in Australia and depending on the results of that test, there is another test that can be done in Canada.

    Ruby (9) and Lachlan (7) have been tested to see if they are suitable matches as bone marrow donors, and we are still waiting for the results of these tests also.

    Once again thank you so so much to all of you. We are very blessed to have such amazing support from family and friends and the wider Nelson community and also complete strangers.

    Wishing you all a very happy new year.

    Megan and Andrew Stephens

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