Today: T-7

So today we learn the importance of taking it DAY BY DAY.

After spiking a temperature of 39.1 at 9pm last night and vomiting Seth continued to have a very high temperature all night and throughout the day with paracetamol not really bringing it down. He woke a few times to vomit and was upset and tired for most of the day.

By 10am he had been given all the doses of paracetamol he was allowed until 10pm tonight. So they decided to try him with another drug called Promethazine Hydrochloride. This drug sometimes helps to bring a temperature down, but sometimes doesn’t. But it also makes them sleepy. Which was a good thing as Seth’s presentation was being made worse by him being incredibly tired.

We eventually managed to get him to have a sleep at 2pm. His respiratory rate was high and his pulse up at 169. His O2 level initially was down to 93, but it came back up to 98 within a short while. Once he fell asleep properly he settled.

It is really worrying to watch. Despite being realistic about our chances of getting him through this you are never prepared to see your child unwell and in the back of your mind you worry that you have seen the last of his cheeky smile. Every time he spikes a temperature you worry.

So we make plans. No pessimistic plans – this battle is far from over. We have as much a chance of getting Seth through this as we have not. But we need to protect ourselves. At the minute we have so much stuff up here that it would take a few cars and a lot of packing to be able to move back home. If the worst happened I do not know how I would be, but I really do not think I would be wanting to worry about getting things home. So we have arranged for a family member to come and collect anything we do not need here. It will be one less thing on my mind,and although I don’t particularly subscribe to fate…. I would rather not tempt it.

So we were back being worried and on tender hooks again, and Seth. Well Seth slept for 2 hours and woke a different child. He still had a temperature, but he was chatty and cheeky and sitting up. He still didn’t really want to play but he ate a few crisps and some cereal. He also managed to get check that the nurse and I were doing everything as we should….yes sir!


Today Seth started chemo with Treosulfan. Traditionally a different chemotherapy drug has been used called Busulfan, however, this drug was proving toxic and had to be monitored. Treosulfan does not require this. However, it is relatively new in use and research into whether or not levels of the drug in the system is something that needs to be monitored is ongoing.

In addition to Treosulfan he has started a drug called Defibrotide. This is an incredibly expensive drug used to treat a damaged liver. Seth’s liver is a concern going into transplant and as such he has started on this drug in order to treat the current damage and to hopefully prevent any further damage, or the current damage from becoming significant.

Seth’s day has now changed, the Treosulfan can effect his skin, so he has to have two baths morning and night and a bed bath at lunch time in addition to hydrating cream being applied throughout the day.

Also chemotherapy can cause sores in the mouth so hygiene is incredibly important. We have to clean his mouth with a sponge 4 times a day with a mouth wash type product and a Bonjella type product. In addition to this I clean his mouth 4 times a day with sterile water and make him drink 4 times a day as well. We also clean his teeth twice a day as you would normally but he is not allowed to use the same toothbrush twice.

When you have chemotherapy you can secret the drug in your body fluids, so to protect ourselves we have to wear gloves anytime we are dealing with any of Seth’s bodily fluids – so his mouth, nose and when he goes to the toilet. If we were to have contact it could affect our immune system.

So busy days – but hopefully that will make this time go quickly as now I am just wishing the days away, desperate to come out the other side.

But we still take it day by day. 

22 thoughts on “Today: T-7

  1. Missy Washburn says:

    So very much is going on for you all…I know I certainly don’t have all the right words to express to you and your family that what you are sharing with the world in your continued strength and resolve is stunning. I know personally how hard it is to watch a child be dangerously ill…holding your breath for the slightest improvement…watching new and newer medicines flow into them and waiting. Please please know there are so many of us on this side pacing and holding our breath for Seth and for you all. Continued support and prayers from Memphis, Tennessee. I say we all wear yellow on May 1st and dot the globe with sunshine for Seth! 👍

    Liked by 1 person

  2. Sandy Kalp says:

    Know that hearts are praying for Seth and for your family here in Southern California. He is an especially wonderful little man and I am in awe of his resolve and positivity! To you, as a mother, I am overcome with respect for your research and knowledge, and the well of strength you display as you work with the medical profession to heal your precious child. God’s most generous blessings on you all.


  3. Christina says:

    Hang in there Seth. We all know you can fight through this. You are so strong. Sending you hugs and prayers your way, everyday. 😊💛


  4. Archangel says:

    We will keep praying for him.   Poor little dude.  He has inspired many of us throughout the world to be grateful for what we have.                                                                                                                   -Seth from New Mexico  

    From: ourlittlehero To: Sent: Friday, April 24, 2015 2:40 PM Subject: [New post] Today: T-7 #yiv9570551336 a:hover {color:red;}#yiv9570551336 a {text-decoration:none;color:#0088cc;}#yiv9570551336 a.yiv9570551336primaryactionlink:link, #yiv9570551336 a.yiv9570551336primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv9570551336 a.yiv9570551336primaryactionlink:hover, #yiv9570551336 a.yiv9570551336primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv9570551336 | LJLane posted: “So today we learn the importance of taking it DAY BY DAY.After spiking a temperature of 39.1 at 9pm last night and vomiting Seth continued to have a very high temperature all night and throughout the day with paracetamol not really bringing it down. H” | |


  5. Kari Olson says:

    I read all of your posts with trepidation, always in fear that Seth might not be doing well. They always bring me to tears! Having lost my only son to cancer 16 months ago, I understand on a deep level this having to live in a world of two possibilities. I think about your sweet little boy all the time, and I say to you, truly, that if I could give my life to save him, I would. He is a shining star in this world and has inspired so many with his strength and courage and his beautiful, sunshiney smile! I hope and pray that he continues to hang on and is ready for the transplant and it is a complete success! Love to you, your family and sweet little Seth. Stay strong, and know that the WORLD is waiting, with bated breath, to hear that Seth has made it through this grueling time and comes out on the other side whole and healthy!


  6. Josh says:

    Seth has been an inspiration to me and my family. There is something awe inspiring about seeing a boy with such challenges smile as bright as him and be so strong. Your family will be in out prayers.


  7. Lindsay says:

    I am a fairly new reader, but I just wanted to comment and thank you for sharing Seth with us, and for sharing your journey. I’m sending prayers and thoughts of healing energy Seth’s way.


  8. Hogan Baily says:

    Thank you for continuing to keep us updated as to Seth’s condition and yourselves as well. Your courage and charm have inspired us all. People from every corner of the earth are praying for you =)

    -New Hampshire, US


  9. Arjun says:

    SETH is just being calm before he works up the Storm. He is coming out of this oh so surely- no brainer there 🙂 SETH – We all love you. You are the BEST!


  10. Jyotsna Wase says:

    Leanne, if you ever need anything, please just ask. Your baby will fight this and how! Every morning the first thing my boyfriend texts me is – there’s a new update (whenever there is an update, that is). His day starts and ends with Seth. 🙂 Never have I seen anything affect him so much. Seth the ninja is going to be home soon.


  11. khoavutr says:

    Seth can overcome it. He will tackle this challenge. Keep our fingers crossed and pray. Best thing will come for Seth. I’ve just done something “simply just can’t happen.” Everyone can do it, I know it’s a tough time at the moment. But I now believe in miracle. Seth will be fine. Go strong little boy. God bless Seth and family.


  12. david Ainsley says:

    Thinking of you all,the staff on the word are brilliant,seeing Seth brings back so many memories of when Reece was there.we will all be wearing yellow on may the first.Stay strong Seth,and mam&dad


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