05 June 2013

Remembering: A Year Ago

On June the 5th 2012 our lives changed forever.

This is what i wrote in my journal on the the 9th of June 2012:

This week has been hectic. On Tuesday (5/6/2012) afternoon we took Jamie in for her follow-up chest X-Ray and the suspicious mass was still present. {A week before, both Jamie and Gemma came down with bronchiolitis and a chance XR showed a shadow behind Jamie's heart} We then did a CT-scan which showed a large solid posterior mediastinal mass. Dr Mitchell thought we were dealing with cancer but wanted us to come in for a repeat CT with contrast the next day and also to do an XR on Gemma. How a day could change from my two beautiful girls running around, laughing, playing, dancing, learning to dealing with something so major.

Then on Wednesday morning we went in for the tests. Jamie was given sedation (which did not work until she went to sleep that night). The CT once again showed a large mass with some calcification behind the heart, pressing on the aorta, spine and oesophagus. It also looks like it has not infiltrated any other organs. It was suggested to be a neuroblastoma. Gemma's XR was clear. Jamie really did not take kindly to any medical procedures (even having her BP taken). We were referred to the Paediatric Oncology Unit at the Wits/Donald Gordan Medical Centre and we went there on today. Gareth's Mom came to us on Wednesday morning and my parents drove to us on Wednesday evening. The 2 grandmas babysat Gemma whilst we saw the specialist (?registrar), Dr Spirios. He took a full history, examined her and looked at her XRs and scans. He could not give us many answers and said histology will tell us exactly what it is and that they often get surprises. We also had to have her bloods done- she put up a huge fight but forgot about it quite quickly. We got a call from him on Thursday evening to say the paediatric surgeons will contact us to arrange for a biopsy on the tumour. On Friday morning we were still waiting and Dr Spirios gave us Prof Beale's (the paediatric surgeon) number. We phoned him immediately and he said they were going to excise the whole tumour. He said it is either malignant (neuroblastoma/ ganglioneuroblastoma) or benign (ganglioneuroma). He also said he likes the position and the size of the tumour and that they will take special pre-caution around the aorta and that he was not bothered by the fact that it was touching the spine. He thinks she was possibly born with it. He wants to operate on her on Tuesday the 12th of June depending on ICU availability which will be crucial....

i know GOD is holding our hands all the way and HE is holding Jamie in HIS hands.

And since than GOD has been holding all of us in HIS hands- through major surgery (x2), chemotherapy, hospital stays, countless tests, scans, XRs etc etc. And HE continues to hold us in HIS hands. Despite the last year, our precious girls have continued to grow and learn! They have amazed us daily! They talk, play, dance, make music, draw, sing, run, jump, build puzzles and lego (duplo)! They give us many hugs and kisses! They are happy little girls and we are so proud to be their parents.

i feel fortunate that a chance XR for a viral bronciolitis and an uncooperative child lead us to find the cancer lurking in her body early enough for us to have hope. But i'll always be cautious, i'll never let the thought of her neuroblastoma leave my mind- i'll keep on praying that her next scan will be clear (and then the next one and the next one), that her urine VMA  and HVA levels will be normal, that her bone scans will be normal and that both my precious children will keep on thriving.  And i'll keep on seeking advice and guidance from neuroblastoma experts from all over the world who have so graciously been answering my questions. And i am also thankful for all the help and support from our families especially my parents and Gareth's mom.

And i'll always be thankful to have GOD's hand guiding us.

{5 June 2012}

 {a glorious day this year, 2013}

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