T+526
This morning Jeremy was admitted as a day patient to Turner Ward for another supervised intake of peanut. The reason for this visit to hospital was because when we tried Jeremy on about 3 or 4 Peanut M&Ms on Sunday after church, he started coughing and saying he felt sick. Thankfully, he stopped coughing after about 15 minutes, but the immunologist wanted to watch him the next time that he ate peanuts.
We crushed up a Peanut M&M and he was given about 1/16th of a peanut to eat. The immunologist watched him for an hour and he didn't develop a cough. So she told us to give him the same tiny amount of peanut every day for a month, and then (if all goes well) to increase the dose. What an unusual type of medicine - Peanut M&Ms!
Wednesday, February 23, 2011
Sunday, February 20, 2011
20 February 2011
T+523
Today marks 2 years from Date of Diagnosis!
This morning we were awakened to shouts of "Autobots, TRANSFORM!" - Jeremy and Stephanie were happily playing Transformers in his room!
We are continually thankful to see our little man running around "just like any other little boy", and sometimes it seems that our year in hospital happened so long ago!
Thinking back - if Jeremy had been a "standard" case of ALL (Acute Lymphoblastic Leukaemia) and not his "high risk" case, he would only just be finishing his maintenance chemo as the standard treatment for ALL is 2 years!
Today marks 2 years from Date of Diagnosis!
This morning we were awakened to shouts of "Autobots, TRANSFORM!" - Jeremy and Stephanie were happily playing Transformers in his room!
We are continually thankful to see our little man running around "just like any other little boy", and sometimes it seems that our year in hospital happened so long ago!
Thinking back - if Jeremy had been a "standard" case of ALL (Acute Lymphoblastic Leukaemia) and not his "high risk" case, he would only just be finishing his maintenance chemo as the standard treatment for ALL is 2 years!
17 February 2011
T+520
One responsibility as a parent of young children living in Australia is to make sure they can swim. So we've been making the effort to send them to regular swimming lessons. Thankfully, they have been enjoying them this time around (previous attempts have resulted in unhappy children). Although Stephanie is doing well, it was Jeremy that has been the focus of our attention (he has been all too willing to jump into the deep end with or without floaties). Given that he has sunk like a stone in the past, it was pleasing to hear feedback from the swimming instructor that Jeremy is close to being promoted out of the beginner class, and up to the next grade (Otters).
We are very thankful for his enthusiasm and joy, and it continues to gladden our hearts seeing him being so active.
One responsibility as a parent of young children living in Australia is to make sure they can swim. So we've been making the effort to send them to regular swimming lessons. Thankfully, they have been enjoying them this time around (previous attempts have resulted in unhappy children). Although Stephanie is doing well, it was Jeremy that has been the focus of our attention (he has been all too willing to jump into the deep end with or without floaties). Given that he has sunk like a stone in the past, it was pleasing to hear feedback from the swimming instructor that Jeremy is close to being promoted out of the beginner class, and up to the next grade (Otters).
We are very thankful for his enthusiasm and joy, and it continues to gladden our hearts seeing him being so active.
Wednesday, February 9, 2011
9 February 2011
T+512
Thank God that the bone marrow transplant doctor had good news for us when we went to hospital clinic this morning - Jeremy's bone marrow aspirate results from last week were MRD Negative!
While we were there, he paged the immunologist, who happened to be running some allergy challenges this morning. So instead of going back to school in time for morning tea, Jeremy was admitted as a day patient in Turner Ward for a peanut challenge.
Initially a tiny bit of peanut butter was smeared on the inside of his bottom lip. No reaction, so 20 minutes later he was given 1/8 teaspoon of peanut butter to eat. This amount was increased every 20 minutes up to 2 teaspoons of peanut butter at the end of the challenge. We are thankful that his peanut challenge was successful, and Jeremy is pleased that he can now eat "anything"!
The immunologist told us to keep giving him peanut butter or peanuts on a weekly basis to keep his immune system familiar with them. She also recommended that we do the same thing with dairy products and egg, as well as other types of nuts (to which he had no reaction when he did his skin prick test - he only had a mild reaction to peanuts and mould).
Jeremy's next bone marrow aspirate is booked for 11 May 2011 - he will keep having these every 3 months until he is 2 years post transplant.
Thank God that the bone marrow transplant doctor had good news for us when we went to hospital clinic this morning - Jeremy's bone marrow aspirate results from last week were MRD Negative!
While we were there, he paged the immunologist, who happened to be running some allergy challenges this morning. So instead of going back to school in time for morning tea, Jeremy was admitted as a day patient in Turner Ward for a peanut challenge.
Initially a tiny bit of peanut butter was smeared on the inside of his bottom lip. No reaction, so 20 minutes later he was given 1/8 teaspoon of peanut butter to eat. This amount was increased every 20 minutes up to 2 teaspoons of peanut butter at the end of the challenge. We are thankful that his peanut challenge was successful, and Jeremy is pleased that he can now eat "anything"!
The immunologist told us to keep giving him peanut butter or peanuts on a weekly basis to keep his immune system familiar with them. She also recommended that we do the same thing with dairy products and egg, as well as other types of nuts (to which he had no reaction when he did his skin prick test - he only had a mild reaction to peanuts and mould).
Jeremy's next bone marrow aspirate is booked for 11 May 2011 - he will keep having these every 3 months until he is 2 years post transplant.
Thursday, February 3, 2011
2 February 2011
T+505
By the time the anaesthetic nurse called Jeremy at 12.20pm today for his special medical sleep, he was very hungry and ran ahead of her to the treatment room! She was surprised and commented that it was a nice change to having to persuade and coax reluctant patients that it was their turn.
It was supposed to be a "routine" bone marrow aspirate. But nothing is ever "routine", and this time when Jeremy woke up from his general anaesthetic, he was hysterical. It was like he was having a night terror, when he yells MUMMY! MUMMY! MUMMY! even though I am right there with him. The recovery nurse called it Emergence Delirium and said it was because he woke up suddenly! Usually, he is a bit sleepy when he comes to, but is happy when given some food to eat.
He eventually calmed down enough to sit up and eat his combined breakfast/morning tea/lunch ...
We will hopefully know the results of his bone marrow aspirate later next week, and are praying that it is MRD Negative.
By the time the anaesthetic nurse called Jeremy at 12.20pm today for his special medical sleep, he was very hungry and ran ahead of her to the treatment room! She was surprised and commented that it was a nice change to having to persuade and coax reluctant patients that it was their turn.
It was supposed to be a "routine" bone marrow aspirate. But nothing is ever "routine", and this time when Jeremy woke up from his general anaesthetic, he was hysterical. It was like he was having a night terror, when he yells MUMMY! MUMMY! MUMMY! even though I am right there with him. The recovery nurse called it Emergence Delirium and said it was because he woke up suddenly! Usually, he is a bit sleepy when he comes to, but is happy when given some food to eat.
He eventually calmed down enough to sit up and eat his combined breakfast/morning tea/lunch ...
We will hopefully know the results of his bone marrow aspirate later next week, and are praying that it is MRD Negative.
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