Today: T+3

It has been a few days since my last update. Apologies, but the stress of getting Seth to transplant I think took its toll and I have been pretty exhausted since the magic went in!!!

How’s Seth?

Well he is ok, he is doing better than  had expected so I am struggling to stay realistic. We still have potentially very rough times ahead. Nothing has changed in terms of risks and expectations, but he is not critically ill which is what I had prepared myself for. I keep having to remind myself that it can still happen. Seth still has no working immune system. The cells are in, but they are not home and not working yet.

 Also his Kidneys are an ongoing concern. At the moment the Creatine (used to monitor kidney function) in his blood is at the highest level of OK for his size. So it is a worry. Doctors have reviewed his medication to make sure they are only giving him drugs that are absolutely necessary. But inevitably they are all going to risk his kidneys to some extent. The positive thing today is that the kidneys have not got any worse and although it is not common for a BMT patient it is not unusual, so it is something we have to watch.

Since T+2 Seth has been having temperature spikes regularly and his CRP (inflammation/infection marker in the blood) is high at 450 (less than 5 is normal). We re not sure what is causing the temperatures at the moment.

In himself Seth is ok. On Saturday (T+1) he was in pain and discomfort but the morphine was helping, and he started to sleep a lot more. At the moment he is sleeping most of the day only having approximately 2 hours of awake time per day in half hour stints. He is getting tired quite easily. When he is awake, however, he is content. He has played and did some drawings today and yesterday.

His skin has an almost tanned look to it at the moment, which is a side effect of the chemo drug Treosulfan. His hands are very swollen and raw so we have a dressing on that won’t stick and bandages.

Seth is still positive fluid wise and the doctors are trying to manage it as best they can by monitoring his input and using diuretics to help him flush the fluid from his system. At the moment his genitalia are quite swollen and doctors think that this is because he is retaining fluid. But he is quite sore and uncomfortable with it.

At night he is continuing to struggle to maintain an acceptable oxygen level. So today we are spending sometime getting him used to oxygen prongs on his face, this will enable them to monitor how much oxygen he needs.

Another side effect of chemotherapy is Mucositis. Seth has bleeding on the roof of the mouth and the inside of his top lip from ulcers caused by the chemo.  We are trying to manage this with god oral hygiene – brushing his teeth, cleaning his mouth with a sponge soaked in mouthwash type medicine, and a bonjella type medicine 4 times per day.

we have bandaged hands because they are raw, prongs for oxygen and sore slin in general from the chemo . get better soon baby

  

 We still need to take it day by day. We do not know what is causing these temperatures, and we do not know how his kidney’s are going to cope with the ongoing medication. We also do not know how Seth’s body ill react to the stem cells, or how the new cells will react to Seth, also we do not know how Seth’s body will continue to respond to the chemotherapy. So at the moment there are a lot of unknown answers. But now everyday that passes we are one day closer to the next step – neutrophils. Hopefully we will start to see those come in at around day 10.

Seth says that Daddy’s magic is still finding its home, so he will feel better soon.

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46 thoughts on “Today: T+3

  1. Gary says:

    Thank you for posting. I’ve been waiting for an update on wee Seth !!! And can only imagine how tired you are because of the last few days !! If there’s anything any of us can do – toys, wearing yellow again or just having a quiet prayer for the wee guy please let us know.

    You have many folk all around the world rooting for your wee boy x x x

    Liked by 1 person

  2. linda harris says:

    Ahh hope Seth can pull through this ,just have to hope the magic medicine will kick in soon ,also feel for you xx😘

    Like

  3. Jane Mayhew says:

    Thank you for updating.; have been checking back constantly to see how Seth is doing. Sending prayers, hugs and all positive thoughts your way.

    Like

  4. Anne Kent says:

    Keeping you all in our thoughts, hopes & hearts ! Good to hear of Seth’s progress. . One day at a time , one step at a time but may they all be lightened by love people are sending your way xxx

    Liked by 1 person

  5. monica says:

    so happy for an update! there is lots of people caring about you guys and especially seth! we cross our fingers for him getting all well. xx

    Like

  6. Linda. Valenzano says:

    Thank you for letting us how how Seth is doing. Prayers and love is all we have to offer, prayers in numbers, we hope God can hear us loud and clear! Lord, please hear all our prayers!

    Like

  7. Ale's mom says:

    thank you for the update…I’ve been waiting for news on Seth! stay strong… i know that feeling of time stretching indefinitely when you spend days after days inside an hospital, tending to your little bundle of love, just waiting…for the magic to happen! I’m praying for your little hero. lots of love from Italy. *hugs*

    Liked by 1 person

  8. jackie says:

    Seth, and Seth’s family, God is on y’alls side. I’m gonna keep praying for you little Seth you are so Strong. And I know everything is going to be Okay. You will be home in No time! I wish I lived in your beautiful city so I can visit you! get better Seth, I check on you everyday. You can do it! Paw patrol needs you!

    Love Jackie from Texas☺

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  9. Suzie Ford says:

    Thank you so much for keeping us posted on your little man. The strength both he and you along with the rest of the family have to not only go through this but to share it with us. My eyes leaked hearing about the pain your little soldier is in. I’m not overly religious but I’ll be lighting a candle for Seth (a yellow one) and saying a prayer. Be strong. Sending good vibes from Perth Australia. 💛💛💛💛

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  10. Jack Ricau says:

    We’re all pulling for Seth. My wife and I send prayers and we’re thinking of you all every day. He will pull through this as he has tremendous support and love from his family and people around the world. Even though we don’t know him personally, we think the world of him. Stay strong!

    Liked by 2 people

  11. lisa says:

    I’m so happy for the update….I’ve been following along. I have twins that are 5 and my heart is thinking of you and Seth every day. May the magic work and may God be with you!

    Like

  12. lesliesantos says:

    Thank your taking the time to update us all. What a tremendous amount of energy and strength it takes for all of you to get through a day. You all amaze us. Continued prayers and support for you and our little super hero.
    Xoxoxo💛💛💛💛💛

    Liked by 1 person

  13. Ashanthi De Silva says:

    Hello Seth’s parents! I am so sorry to hear about Seth’s complications. There is a wonderful resource for parents of SCID affected children. Many of them are going through or have gone through BMTs with their children and can offer you advice and answer any questions you may have. I truly do think it would be a great resource for you especially at this difficult time. Please reach out to Barb Ballard, barb@scid.net. You can find her on FB as well and connect that way. She will add you to the email listserv. They are a supportive group, and have so much knowledge. I myself was born with ADA SCID and I am now 28 and living a wonderful life! The listserv has been such a help to me. I do hope you will join. Praying for you and Seth, and hoping he heals soon!!
    Ashanthi De Silva

    Liked by 2 people

  14. Cindy Austin says:

    Good to have an update on his progress have been thinking about him alot and was going to pm Alex to see how he was doing !!! Keep strong lil man you are doing fine !!! Xxxxx

    Like

  15. Missy Washburn says:

    Thank you so much for using your energies to update on Seth! I cannot imagine the wear you have all had and I hope when Seth is sleeping you are all finding a way to rest as well. We remain with you in our support and prayers from Memphis, Tennessee 🌟

    Liked by 1 person

  16. Mitchy (Michelle) Leinen says:

    Thank you for all the updates you give us. I know you are exhausted and I’m sure you struggle with trying to stay positive. The prayers keep coming your way and if a Seth could be healthy on love alone, He would live to be 200!! God bless you Leanne, Nick and Hugo and more than anything God Bless the little man we all love so much!!! Seth, you are a true hero!!!

    Liked by 2 people

  17. Jon miklich says:

    As always thank you for such great updates, I look forward to hear about Seth and his progress. Get well Seth were all pulling for you.

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  18. Robert says:

    I struggle to be expressive with words that describe feelings but your family’s story, Seth’s story has touched me very deeply. Thank you for the update and know that your words and your families strength is so inspiring to so many including myself.
    Seth and you all are in my and my wife’s prayers. It is in no way the same but two years ago our daughter who is close to the same age as Seth, was very sick and ended up in the Calgary Children’s Hospital. We almost lost her had it not been that we finally understood we needed to advocate for her and strongly challenged some to have her transferred from our local hospital the the Children’s hospital 2 hours away from us. We will always be indebted to the amazing and loving staff there who worked feverishly to discover what was going on with her. A couple surgerys and some scary time in intensive care along with a longer than anticipated stay we brought her home safe and healthy.
    She is turning five in 3 days (Thank the Lord) and our prayers are that Seth will make a speedy recovery and be back to himself in no time. He is truely a Miracle and your journaling of your journey is helping so many others understand and feel connected to you.
    Thank you so much for sharing this deeply personal and sometimes deeply scary time in all your lives, and all the while demonstrating such courage, respect and love.
    God bless you

    Liked by 2 people

  19. Julie Eddlemon says:

    I’m in California, USA and have been following Seth since the “Wear Yellow for Seth” day. I wore yellow and posted a message for Seth. He is in my prayers. May God’s blessings be upon you, Seth and family. Hugs!

    Like

  20. Amy says:

    We are still praying for you Seth!!!! What an amazing little boy you are!!! Your mommy and daddy love you sooo much!!!! What a strong soldier you are!!!! OUR PRAYERS AND LOVE ARE WITH YOU!!!!!

    Amy and Aliyah

    Like

  21. Lesley says:

    You certainly have lots happening so no wonder your exhausted…. I understand why your taking it day by day. So much happening. It’s great getting the updates and seeing how Seth is doing. He sounds like me just now with all the sleeping….. Still thinking about him and his lovely smile every day. Xxx 💛💛💛

    Like

  22. sylvia says:

    I pray that daddy’s magic finds it’s new home and settles in very soon 🙂 my thoughts are with you all. You are a very inspirational and strong family x

    Like

  23. Olivia says:

    Glad to hear that he is in good form when awake. About 3 days after BMT our son was swollen and took a rash all over his body with spiking temperatures. We never knew the cause. Last Friday he celebrated hos 4th birthday and is a completely normal wee boy enjoying life. Thinking of you all x

    Liked by 2 people

      • Olivia says:

        My heart goes out to you. Seth is in the room that Oscar was in. The nurses there are worth their weight in gold as are the doctors. Chemo was tough on our wee man and it’s hard for them to go through it. Oscar was only 9 months and ive always said it must be so much harder when the children are older. For us it was just life at that time and I look back now wondering how we ever did it. We are from Ireland and are over this weekend in newcastle. Will be thinking of you all. We all wore yellow on Friday for Oscar’s birthday and of course Seth’s transplant day. Sending you all love and positive thoughts especially for the wee man x

        Liked by 2 people

  24. Carol Frost says:

    I don’t know how you continue to do it, it’s heart breaking that some one so precious has to go through something like this. May God be with you through it all, my prayers are with your family. I completely understand the stress and strain it can cause as my husband had a liver transplant and we waited a year to get on the list and then was only on it for 3 days. We were very lucky. I hope luck stays with you and Seth gets better and better each day. I will keep you in my prayers.

    Like

  25. Crystal says:

    Hi Seth’s Mummy. I just wanted to send a great big hug to you from one Mum to another. My little Alfie had a BMT on Ward 3 last year. It’s hard going and I know you’ll be digging deep right now for your whole family. I needn’t say stay strong because that’s the only option right? I’ve been following your blog and I’m thinking of you all….one day at a time.
    Take care.
    Crystal. x

    Liked by 1 person

  26. Mark Mai says:

    My prayers are with this incredible little fighter each day. I hope and wish for a speedy recovery and perhaps a bit of magic to speed things along. My hearts goes out not only him, but you both as his parents. Stress is a horrible emotion to deal with day in and day out. Stay strong, keep the faith and know many all over the world are pulling for your little guy. Please tell him I said hello and I wish him a speedy recovery. God Bless!

    Like

  27. Mae Carmel says:

    Oh…Seth..it breaks my heart to see you like that but I’m happy that you are fighting and staying positive! God is with you! I pray for your speed recovery. You inspire us!

    Like

  28. Tiffany de bruyn says:

    I am still keeping Seth and you two in my prayers.. I do hope he continues to do well and overcome this difficult time in his life.. bless you two for staying strong for your little angel!! ♡♡

    Like

  29. Meg says:

    You have all gone through so much and still are. I have been so fortunate to have two healthy kids who are now adults. It takes a very special, strong person to go through what yourself, Nick and especially Seth have gone through and continue to do so and I want you to know that you are an inspiration to so many people. It is so good of you to take the time to let us know about Seth’s progress and to bring awareness to so many people about this heartbreaking disorder. May God bless you all and I pray for Seth’s recovery and look forward to seeing pictures of him back home with his wee brother Hugo playing in the garden together. 👪

    Like

  30. Jason Shuman says:

    Hey Seth,
    My name is Jason Shuman. I’m a 24 year old Venture Capitalist living in New York City and I was diagnosed with PI at 6 months old. Growing up I had chicken pox 4 times, multiple bouts with pneumonia, over 400 infusions and more random infections and colds than I can count. With that said, I’m a better person because of it and my health has been under control over the past ten or so years. The reason I tell you this is because I believe in what the future holds for you.

    Seth. You’re a fighter man. It’s been incredible to watch your journey to date thus far and it’s truly an inspiration for so many people. Continue to have the confidence to fight through every hurdle that gets put in your way and have faith that your future is going to be incredible.

    Stay positive. Envision the the future. And keep being you.

    Things will start to look up in the next weeks, months and years. And soon enough you will define SCID versus it defining you. The way I look at it is that SCID will have a new definition in your life. Here’s what I think it is:

    Strength
    Courage
    Independence
    Determination

    Please feel free to reach out. My thoughts and prayers are with you.

    Regards,
    Jason Shuman

    Liked by 1 person

  31. Arjun says:

    SETH is coming home jumping. Yay!!!! The GUITAAAR boy is Home! Yes he is home. ” Seth – Whats this?” 🙂 “guitaar ……… GUITAAAARRRR!!!!!!…. GUITAAAAR!!!…… heeeHEEEYYYY!!! ” . I just can’t get enough of his videos. Lots more to come now Yipeeeee

    Like

  32. Ruby says:

    Praying for your little boy & the whole family!! It is so incredibly sad to see them go through everything they have to go through. My little brother is 8 years old and also has scids. He’s been battling it since he was born 😦 it’s just so devastating.. He’s 8 but he’s the same height and size as my 4 year old bc of all the medications that stunted his growth.. My dad & stepmom don’t really tell us much about it,. I’ve had to look everything up myself bc I had no idea what it was… I feel like they are just numb to it., it’s so sad.. So much stress & sadness, and confusion,, I am so sorry your baby has to go through that 😦 stay strong! Xoxo

    Like

  33. Christine Raphael says:

    Your courage and hope are so inspiring. Seth is amazing . I love reading his comments. Wishing you all the best. Hoping for fantastic results. Sending you love and hugs. All the way from M Z

    Like

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