Wednesday, 27 June 2012

Jasmine's Journey

Jasmine's Journey continues....

As June approaches it's close, it is hard to believe that we have been back from Boston for a whole month.  It is so good to be home, though this period of time has taken some adjusting back in to - just as arriving in Boston did.

Both Finn and Jasmine are doing well, though Finn is often too quiet and thoughtful for my liking and I wonder how a 9 year old processes all that has happened in these last few months.  I don't know how to process it myself most days, and thinking about it all stirs up such a melting pot of different feelings that I struggle to find the words, ways and courage to help him through all of this.  I find I hug him and tell him I love him often and hope for now it carries him and relieves some of the weight.

Jasmine seems the most unscathed from the whole experience in many ways.  She has just booted back in to life - there are differences but they are subtle.  Throughout treatment, Jasmine felt well.  Her appetite and energy were low but she didn't suffer some of the other side effects that were a possibility.  She was excited to be home and it was an absolute joy to have her home for her birthday :-)  The following couple of weeks saw a dip in her energy and she needed to rest often.  She tired easily but would bounce back.  She continued to re-introduce some foods back in to her diet as they began to taste "normal" again though this is still an area with slow progress and takes ongoing effort to encourage her to eat.  Ironic as we're now full speed ahead with Rick's cooking business!  I pray she grows stronger in health in every way, daily, and I try not to fret and worry when she doesn't eat or has a tired day - I have to keep perspective of how far we've come and really, how amazingly well she is doing.

As we find our new "normal" with all the considerations it now brings, I notice Jasmine also being quiet and thoughtful at times.  She LOVES being at home and I think it is where she wants to be right now.  She has been going to school for some half days and has enjoyed them but has been too tired to attend a full day.  I think she also is trying to process all of the additional attention she has been receiving and for a normally quiet and relatively shy girl, I think it has been tricky for her sometimes.   Sometimes she shares with me her thoughts - her  VAD (Ventricular Access Device - permanent IV access) which she had surgically implanted bothers her.  She worries it will get bumped or knocked when she's playing with her friends at recess and I feel it is a psychological stumbling block for both her and me.  When in Boston they said she could have it removed and wouldn't need it anymore.  In Vancouver, policy is to wait until the results of the first MRI are in.  I like their optimism and good faith in Boston.  It wasn't spoken but the unspoken is louder - they don't want to remove it yet in case the cancer is still there and she needs chemo administered.  Of course this is sensible, but as mentioned, I prefer the optimism of her Boston team and I feel the weight of the waiting.  I think Jasmine will be so much happier once we have the port removed too.

That said, this mama is so happy to see Jasmine skipping across the playground humming to herself, because I think its impossible to skip when you're feeling unhappy!  So I pray you always keep that skip in your step little girl and we continue to give thanks for it.

We're moving in to the next phase of the journey.  This week sees our return to Children's Hospital for a check up and to have her VAD flushed (prevents infection).  Jasmine knows whats coming.  She woke this morning and said "is it emla cream day?"  and I whispered, "not yet baby girl, one more sleep."  It may be another mascara monday even though its a Thursday.  The memory and emotion may be stirred somewhat tomorrow after this temporary reprieve we've had in June.  But again - perspective - it is what it is and I'll be grateful for the care taken of her.

We now have a date for her first post - treatment MRI.  She will have this on Monday 9th July.  For now, I'm grateful for the day I'm in, for the good health my family have, and might I ask for your prayers for continued healing, hope and health for Jasmine.  God is good all of the time and there have been and continue to be so many gifts within this journey.  We are so very grateful for all your kind words and prayers and know the power they have.  Thank you for your continued support for our whole family on Jasmine's journey.

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