A day at home resting and recovering!
Wednesday, September 29, 2010
Tuesday, September 28, 2010
T+378 or 54 weeks!
Update on the "slumber party" last night - after some chatting and laughing, the children were asleep by the time the adults went to bed. It was nice to hear their sleep noises as we too drifted off to sleep.
Jeremy woke up in the middle of the night and wanted to go back to his own bed in his own room. This was quickly arranged, and he was happy to go back to sleep by himself.
However, around 4.30am a very cross little boy stormed into our bedroom demanding to know why Mummy had put him to sleep in his own room when he was supposed to be in our room!!!!
By then, Stephanie was fully awake ... so that was the end of our sleep for the night!
Monday, September 27, 2010
Sunday, September 26, 2010
Saturday, September 25, 2010
Friday, September 24, 2010
Jeremy spiked a fever at 9.15pm last night! This morning he had slightly elevated temperatures (although no fever), so he went to school for the last day of Term 3 until morning tea time. After lunch, he went to see the doctor - but by then his temperature had gone back to normal, and the doctor could find no reason for his fever. He went to bed tonight with his temperatures slightly up again ...
Thursday, September 23, 2010
Wednesday, September 22, 2010
Tuesday, September 21, 2010
T+371 or 53 weeks
For us, today was a day tinged with sadness. This morning Jeremy went to hospital for a spine X-ray to check the health of his bones, and a hearing checkup. Although it will be some time before we know the results of his X-ray, unfortunately our suspicions that Jeremy has some hearing loss have now been confirmed.
When he was tested in August last year, his hearing was "perfect". Now he has high frequency hearing loss, which means that he cannot hear high-pitched sounds. Thankfully, his low and middle frequency hearing is normal and also he does not need to have a hearing aid. The bone marrow transplant follow-up nurse told us that it is common for the antibiotic Gentamicin and TBI to cause hearing loss, but that it should have arrested and will not become any worse. However, he needed Gentamicin to fight the severe Gram Negative infections that he had pre/post/during transplant. He will have another hearing checkup in 4 months' time.
While we are sad about this, we are still so thrilled that our little boy is in remission and is running around very happy and active. Putting things into perspective, this is just a minor side-effect of all the toxic treatment that he has been through - and thanks to God, he actually made it through!
Monday, September 20, 2010
Sunday, September 19, 2010
Saturday, September 18, 2010
Friday, September 17, 2010
Thanks to the Ronald McDonald Learning Program which provides educational assistance for children who are recovering from a serious illness, Jeremy has been able to attend tutoring sessions in the mornings before school with another oncology survivor from his kindy class. His first session was on Wednesday (on his one year anniversary!), and his kindy teacher helps them with their reading and writing etc.
Thursday, September 16, 2010
Jeremy went back to school yesterday, and was happy to see Stephanie perform in the Year 2 Korean Dance at assembly. Their performance was a "dress rehearsal" for tonight's big Moon Festival celebration at school.
After an early dinner, Stephanie and Jeremy were very excited to dress up in their Chinese outfits and walk to school in the dark with their glowsticks and lanterns. It was spectacular to watch the Chinese Lion Dance on an outdoor stage on the astroturf, and then we waited (in the cold and the wind!) until it was Stephanie's turn to sing with the school choir for the Autumn Moon Lantern Song and then to dance in the Korean Dance. Towards the end of the evening, it was so freezing cold that some children were shivering as they danced - we were too chilled to stay for the last item, which was the gymnastics display!
Wednesday, September 15, 2010
Tuesday, September 14, 2010
Praise God that Jeremy remained afebrile all night, so that he could have the first of his "live" vaccinations today. He was dosed up with Panadol, and then bravely watched as the doctor gave him his Measles Mumps Rubella shot in one arm and his Chicken Pox one in the other.
He stayed home for monitoring, but has not had any adverse reaction to his immunisations. Hopefully, he can go back to school tomorrow!
Monday, September 13, 2010
Sunday, September 12, 2010
As Jeremy was still coughing and we were all not 100%, we decided to do church at home this morning and then rest for the remainder of the day.
This evening Jeremy felt warm, and his temperatures were higher than normal ... by 10pm tonight he had spiked another fever!
Saturday, September 11, 2010
Friday, September 10, 2010
Thursday, September 9, 2010
This time last year, Jeremy had his first 2 doses of TBI (Total Body Irradiation) - praise God that it worked!
Jeremy's fevers today were lower (in the 38 degree range) and his temperature spikes were further apart. He still has a bad cough, but is being encouraged to drink every time he coughs!
Wednesday, September 8, 2010
A febrile Jeremy went to hospital clinic this morning, and we are thankful that
- he can stop his final transplant medication as from today, because his immune system has recovered and is almost back to "normal"
- he can now have his "live" vaccinations (eg. measles, mumps, rubella, chickenpox), as his immune system has responded well to his first 3 sets of immunisations with "killed" vaccines
- he only has to have 3 monthly blood counts instead of monthly ones - which means he only needs to go to hospital clinic once every 3 months, not once a month!
The bone marrow transplant doctor told us that Jeremy's fevers and cough are from an URTI (Upper Respiratory Tract Infection) - ie. a virus - which just needs Panadol and TLC!
Jeremy will have his next bone marrow aspirate on 13 October 2010, and then these will also be every 3 months.
Tuesday, September 7, 2010
Monday, September 6, 2010
Jeremy's fevers peaked at 39.5 last night and remained high all night. However, we are thankful that he was still bright and cheeky at 4.30am, when he wanted BaBa to cuddle him in bed!
Although he was feverish all day and has developed a dry cough, he was happy to walk Stephanie to and from school, read 7 home-readers and make a guitar!
Sunday, September 5, 2010
T+355 - Happy Father's Day!
We were pleased to watch Jeremy and Stephanie performing their Father's Day items in church with their Sunday School friends. Jeremy's Infants Assembly were very cute as they sang this song with lots of actions -
Sometimes good things happen, God is there
Sometimes bad things happen, God is there too
Good or bad, happy or sad
I know that God is there
However, when it was time to pick up Jeremy from Sunday School, his teacher told us that Jeremy had been very tired in class. He also felt warm to the touch, but insisted that he wanted to go out to eat Tomato Rice and Crunchy for lunch. He was very drowsy in the car on the way to lunch, but brightened up amazingly when his meal arrived! He ate lots of Tomato Rice, a little bit of Crunchy, and then munched happily on prawn chips which PawPaw had bought for him.
He was 38.7 degrees when we came home, however his temperatures came down quickly with Panadol and he wanted to play (and not nap) this afternoon. Unfortunately, at dinnertime he started shivering - he had spiked another fever and just wanted to sleep (and not eat).
Saturday, September 4, 2010
Friday, September 3, 2010
Jeremy visited the doctor before school this morning, who noted that his lymph nodes on his neck have not grown any bigger and that (although they are swollen) they are not of an abnormal size. He told us to show the bone marrow transplant doctor when we go for a checkup next week.
Thankfully we made it back to school in time for Jeremy to go shopping at the K-2 Father's Day Stall. He was very pleased with the present that he chose for BaBa, which is all wrapped up in his beautiful handmade wrapping paper and waiting to be opened on Sunday morning!
This afternoon after school, Stephanie and Jeremy were busy making gingerbread letter cookies for this weekend. Stephanie made D A D cookies, and Jeremy made B A B A ones!
Thursday, September 2, 2010
Wednesday, September 1, 2010
This morning Jeremy said that his legs hurt, so his cyberchondriac mother went into a panic and hauled him off to see the doctor again. The doctor couldn't find a reason for his leg pain, and pointed out that they can't be very painful if he is still running around as usual! The doctor told us to monitor him and to come back on Friday for another review of his swollen lymph nodes in his neck.
Tonight Jeremy was very excited to wear his flashy shoes and light the way up the hill to the high school hall for our school's Twilight Concert. This concert is the highlight of the school's music program and is an opportunity for all the choirs, ensembles, bands and orchestras to perform. After waiting in a long queue which snaked down the road, we joined hundreds of students, parents and friends to fill the hall to overflowing! Jeremy enjoyed watching Stephanie sing in the Year1&2 Choir, and he danced along copying their hand actions!