Update - 25 June 2011

June 25, 2011

It has been just over 6 Months since the 'Friends of Alyssa' Benefit night, so we thought it was about time that we gave aanother update on Alyssa’s Progress. But 1st we would like to thank every one of you who attended the benefit night back in November 2010 or donated to the 'Friends Of Alyssa' charity. Unfortunately at this stage we are unable to advise the exact figure raised from all the 'Friends of Alyssa' fundraising as we are yet to receive any of the funds.

Now back to Alyssa. As you are aware, Alyssa was diagnosed with Infantile Acute Lymphoblastic Leukaemia in August 2010 at the age of just 10 months, after around 8 months of chemotherapy, her medical team concluded that the chemo was not working and the only option was a bone marrow (Stem cell) transplant. On the 11th April 2011 Alyssa was placed  into medical isolation, at the Sydney Children's Hospital at Randwick, in preparation for her bone marrow transplant which took place on 21 April 2011 (Classed as ‘Day 0’).

The transplant grafted on May 5th 2011 (‘Day 14’), and on the 8th June 2011 (‘Day48’) Alyssa was discharged from full-isolation in the Sydney Children’s Hospital to semi-isolation at Ronald McDonald House, however her immune system will remain suppressed for a varying period of time and will remain closely monitored.

The "100 Day mark", which is 100 days post-transplant, is generally considered a milestone - by this time patients are considered past the worst of the procedure and on the path to recovery. Full recovery is slow, with it taking up to 2 years for the patient to return to full heath.

 

Update - 16 April 2011

April 16, 2011

Well the past 6 weeks have been pretty crazy with only 1 week spent at home, and what a wonderful week that was. The girls loved it, playing together and Alyssa looking the best that we have seen her since diagnosis.

Here is a summary of some of the more eventful things thrown at us in the last 6 weeks:

March 9th: Admitted to hospital for the last round of chemo (the nurses call it FLAG and it’s the worst type) Alyssa copes well.

March 15th: Blood transfusion

March 16th: Chest X ray

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Update - 2 March 2011

March 2, 2011

It’s been a while since our last blog, so here’s a quick update.

Alyssa’s medical team has advised us that she will have to undergo a bone marrow transplant, we are not sure when yet, possibly after round 3 or 4 of the high dose chemo. She is currently going through round 3 of the high dose chemo.

Round 1 of the high dose chemo meant that most of Christmas was spent in Hospital, after she was admitted to Campbelltown Hospital on Christmas morning with High temperatures. While she was ...


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Update - 7 November 2010

November 7, 2010

We can't believe that 2 weeks ago we were blogging from Ronald McDonald House, it really feels like alot longer than that! The last 2 weeks have  been quite eventless but eventful at the same time. We have attended friends houses, little friends birthday parties & even got to watch Maddie at dancing. Don't get us wrong we still had to fit in Doctor's appotinments,chemo & a blood transfusion but at least we were home and living a relativily normal life.
Clinic appointment on Wednesday brought u...


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Update - 24 October 2010

October 23, 2010
Well, where to start. Its been an emotional 2 weeks since our last blog, and its got nothing to do with how our little fighter is doing. She is fantastic, she is coming off 4 days of chemo and you could not even tell. This time she is still eating which is great, crusing around all the furniture & just smiling most of the time (exept for the times when she squeals, which we both hate).

Earlier this week Amanda had a little meltdown, just fed up with not being home and the uncertantity of it al...
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Update - 12 October 2010

October 12, 2010

After a restless night, Amanda noticed that there was some swelling around Alyssa's neck yesterday. An X-ray then confirmed that her Central line (the tubes that blood is taken/given and her Chemo/meds are fed into) had become dislodged from the artery and that surgery would be required to have the Central line removed.
As there was some redness around the site where the central line goes into the chest they did not want to risk putting in a new one until it clears up. So after around 12 hour...


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Back to Treatment

October 5, 2010
With a wonderful weekend release over it's back to reality with treatment in hospital. Starting the Protocol IB today so back into surgery tomorrow for another Bone Marrow Aspiration.
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Alyssa's Birthday

October 3, 2010
Friday nights blood transfusion went well with no temperatures all night so Alyssa got to have a wonderful day at home for her birthday.  The Cake Studio at Sans Souci donated a beautiful Princess Cake to the hospital for Alyssa's birthday which we were able to bring home, as this looked too beautiful to cut, Kim's designer cupcakes were a big hit. We would like to thank every one who made this day special, with a special thanks to Christie and Melanie for the wonderful decorations.
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Great news

October 1, 2010
Had a meeting today with the specialists, expecting to hear bad news as usual, but today even the specialists were surprised, the leukaemic cells were alot lower than expected and therefor told us that, after another blood transfusion tonight, we could take Alyssa home tomorrow and for the long weekend, so she can enjoy her 1st birthday at home.
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Treatment

September 29, 2010
Had Plazma today, brings our count to 4 x blood transfusions, 4 x platelet transfusion and 1 X Plasma transfusion.
Surgery today consisted of a Lumba puncture, bone marrow asperation and intratheakal chemotherapy.

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