Seth did get his long awaited temperature, however, thankfully, it was very short-lived and the expected fierce illness didn't come. Also, his counts have recovered enough for him to be able to come home for a week. We weren't expecting such a quick count recovery and it is definitely an unexpected blessing to have him home for a while.
Seth has had further chemo but has taken it on the chin with not many side effects.
Sienna has had a visit with the Bone Marrow Team and was trying to be very brave when they put the blood pressure cuff on. She was breathing deeply and holding back the tears - she was really trying so hard. She didn't know what it was going to feel like and she thinks anything a doctor does must hurt. She has seen Seth do it a thousand times but it's different when it's her turn. It was so funny and it was hard to keep from laughing and take the whole thing as serious as she obviously was. She couldn't wait to get out of there before they thought of some other horrible thing to torture her with! After she was saved from the doctors clutches Brett and I were told about how they will take the bone marrow and what will happen to Sienna and the bone marrow etc. They will be taking 440mls from her tiny little hips - it seems like a lot to a mum. She will be pale and lethargic for a while and quite sore on her back with some bruising for a few days. She will need iron supplements for a month but they said kids bounce back very quickly and she should be fine to go home the same day as long as there are no side effects from the anaesthetic.
We came home yesterday(Monday) and we have Seth with us until next Monday when he has to go to clinic for a lumbar puncture, bone marrow aspirate and methotrexate into his central nervous system. Afterwards if he is well, we can take him home again and bring him back in for admission on Wednesday for two weeks of heavy duty chemo.
Seth will be getting his bone marrow transplant in 8-10 weeks depending upon his bone marrow results. If the cancer is being killed off the way they hope it is, then, it will be 8 weeks. If it is being stubborn about it, it will be 10 weeks. So around late June, early July there will be no going back.
Seth
Tuesday, April 24, 2012
Friday, April 13, 2012
Update
Sorry for the delayed update, I havent been home since our 5 day stay - still not home and updating via an iPad which is not the easiest to type on.
On our return to hospital Seth spiked a temp yet again so they once again began antibiotics. He got mucositis all over his lips in his nose all through his digestive system . His nose wouldn't stop bleeding so they had to burn it to stop it - much less painful than it sounds. His lips also constantly bled from the ulcers. His lips are just now recovering but he is getting the mucositis returning to his mouth.
He has had a few of those nasty chemo needles - aspariginase, steroids, methotrexate, vincristine and mitoxanthrone aka "the smurf drug" as it is bright blue. It is one of the most toxic drugs but the kids love the blue going in and the green wee coming out! Thats one way to learn about colour mixing! The smurf chemo is meant to make him very ill over the next 6 - 7 weeks. Seth has been really well for the last week, however we are staying in hospital as they are expecting a fever any minute and we live too far away to get him here within an hour. He has quite an easy going doctor who doesn't get worried over much so when he says this drug is fierce and the illness to come from it will be fierce and he doesn't want him to leave the hospital I tend to take notice. As I am writing this Seth's temp has gone up to 37.4 so it looks like it may begin tonight.
Seth had an allergic reaction to an antibiotic they gave him and he got a red itchy rash over his head, back and chest and made his fever to increase to over 39 degrees. They tried to persist with this drug over many days playing with diluting it and running it over longer periods but the rash continued to irritate him so they had to find a new drug to do the job. They think he may have had a staph infection but it is also a type which is a known contaminant so they arent exactly sure if it was in him or if it was on something that came into contact with the culture.
He had platelets a couple days ago, his counts are 0.0 and expected to stay there for many weeks to come. He is in week 8 of a 15 week program. He had vincristine today and has more coming over the next couple weeks.
On our return to hospital Seth spiked a temp yet again so they once again began antibiotics. He got mucositis all over his lips in his nose all through his digestive system . His nose wouldn't stop bleeding so they had to burn it to stop it - much less painful than it sounds. His lips also constantly bled from the ulcers. His lips are just now recovering but he is getting the mucositis returning to his mouth.
He has had a few of those nasty chemo needles - aspariginase, steroids, methotrexate, vincristine and mitoxanthrone aka "the smurf drug" as it is bright blue. It is one of the most toxic drugs but the kids love the blue going in and the green wee coming out! Thats one way to learn about colour mixing! The smurf chemo is meant to make him very ill over the next 6 - 7 weeks. Seth has been really well for the last week, however we are staying in hospital as they are expecting a fever any minute and we live too far away to get him here within an hour. He has quite an easy going doctor who doesn't get worried over much so when he says this drug is fierce and the illness to come from it will be fierce and he doesn't want him to leave the hospital I tend to take notice. As I am writing this Seth's temp has gone up to 37.4 so it looks like it may begin tonight.
Seth had an allergic reaction to an antibiotic they gave him and he got a red itchy rash over his head, back and chest and made his fever to increase to over 39 degrees. They tried to persist with this drug over many days playing with diluting it and running it over longer periods but the rash continued to irritate him so they had to find a new drug to do the job. They think he may have had a staph infection but it is also a type which is a known contaminant so they arent exactly sure if it was in him or if it was on something that came into contact with the culture.
He had platelets a couple days ago, his counts are 0.0 and expected to stay there for many weeks to come. He is in week 8 of a 15 week program. He had vincristine today and has more coming over the next couple weeks.
The results from his bone marrow we thought were great to begin with - we were told he was in remission which meant the drugs were working. But once we got the MRD results back (MRD is a very powerful microscope test they do to see cancer cells) it found the cancer still existing. The doctor told me this wasn't great news, but it wasn't awful news. So... We wait for the next bone marrow MRD results which are done in week 13 and hope for a better result.
Seth had a wonderful Easter weekend. We were fortunate enough to be able to rent out a room at Ronald McDonald house for the four nights. This meant Brett and the girls were right across the park from us and Seth was well enough to get gate passes. We did putt putt and went to Balmoral beach. We ate dinner down at the house at a table like a proper family and we sat together on the couch and watched tv together as a family. Seth and I just had to come back to sleep the night and stay till around midday for all his meds to be given. We then had freedom for the rest of the day. It was wonderful - I was so pleased he was well enough to enjoy the Easter weekend and get out for a change and joke and fight with his sisters and to do holiday activities like most kids get to do. It was refreshing.
I would like to send out a Thankyou to Millie and Asher who sent a very thoughtful gift with no return address. Thankyou to Heritage College in South Australia -Seth is going to make a Thankyou card this weekend. To the many kind and generous people who send gifts please know that they are greatly appreciated and they put smiles on our dials. I am trying to send a note of thanks either via Facebook or letter and I would hate to miss anyone out. I apologise that I am a little delayed in getting to them as there are so many people to thank.
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