Today: T+5

So I would like to start with my opinion on chemotherapy…..It’s a BITCH (sorry mum).

I should probably expand on that statement a little. Chemo in our situation is a necessary evil, and it is EVIL. Looking back at Seth’s first transplant we made the decision we did because, well we were told that he would not survive chemotherapy. It got us this far. But the reality is that if Seth would have been well enough for chemotherapy in the first place, we may not be here now. So we are here and we have used chemotherapy this time to try to get a better graft and a cure. It’s necessary, absolutely and I do not regret the choices we have made.

But,

My baby boy is so unwell with it. His mouth is full of bleeding ulcers, he’s violently wrenching and vomiting bringing up bile as he cannot tolerate anything in his stomach other than 6ml an hour of Dioralyte (and he has to have 2 hour breaks every 4 hours).

They are also concerned that he has VOD (Veno-Occlusive Disease) another chemo side effect. It can be life threatening. However, Seth was on the treatment from the first day of transplant because of worries about his liver, so hopefully it will not develop into a severe form.

Then there is his skin. His poor skin. It looks like sunburn and apparently also feels like sunburn, so its painful, especially when he is touched. In parts the skin is a bit worse and sores have developed. His hands are the worst part, which we knew was likely to happen because of the previous damage to them as a result of the Graft Versus Host Disease. They are completely raw in places and oozing a bit. We have special none stick dressing on them and then they are bandages to stop him picking. But when we change the bandages just the air hitting them makes him cry in pain. We also have to soak them in warm water with antiseptic lotion in and he is so scared of putting his hands in I have to force them in the water. He just looks at me sobbing, it makes me feel so bad but we can not risk his hands getting any worse.

my baby’s poor hands

In addition to this he is still retaining fluid and it seems to be going to his genitals so they are very swollen, this in addition to the sore skin makes it a very tender area.

So we have all that going on with the chemo, and he is also still spiking temperatures and has a high CRP (inflammation marker in the blood) so the doctors are concerns about a fungal chest infection. He is also needing more and more oxygen each day to maintain an acceptable O2 level. This may be partially down to the chemo (which is likely to have gone to the already damaged area in his lungs), but also likely to be related to an infection. As a result his antibiotics have been changed and his oxygen requirement is being closely monitored.

He is now getting Buffy Coats again (neutrophils that go in, attack and then die) so hopefully this will help him deal with any infection alongside the antibiotics until the graft takes and he starts to get his own protection. Hopefully this will be the beginning of next week, but it may take longer. There is no way of telling we just have to wait and see the blood results each day waiting for the 0 to change to 0.01 or higher and then watch is hopefully keep climbing. As that number climbs we should see the side effects of the chemo start to reduce and we should start to get our little man back.

His Kidney’s continue to be a concern and are being very closely monitored. He has had an ultrasound today to check his liver, kidneys and stomach and although there are changes they are not significantly concerning at the moment, but they need to be closely monitored.

In himself he is tired, and lethargic, which is understandable considering everything that is going on. He is so good with everything that has to happen, dressing changes, creams, baths,all sorts of things keeping him awake and that are, currently, very painful. We keep saying how brave he is. But I don’t like saying it. I don’t want him to think he has to be brave, or do anything that we want just because we want him to. I want him to be pain-free and a normal 5-year-old. I want him to have a tantrum because he has to eat his greens or because he can’t watch his programme all day long, I want him to run around and have to be told off for running into his brother, I just want him to be able to go home.

So right now, we do what we can to make that happen. We bathe him, put his creams on, keep his hands clean, change his bedding, give him medicines, make sure any changes are discussed with the doctors and nurses and we just keep going. We make sure we are there so that when he wants to read a book, or play a game he can, and we keep taking it day by day.

Advertisements

104 thoughts on “Today: T+5

  1. bottomtothetop says:

    Dear Leanne… What can we say to help? Oh my goodness it’s just so unfair. I cried for you and Seth reading this. Awful suffering he is enduring. I cannot imagine. Leanne stay strong, you are doing everything you can for beautiful Seth. You have to believe in all that you can do for him. He is amazing. You are amazing. Sending you love and thinking of you. Nicki (Brisbane)

    Liked by 3 people

    • Daisy says:

      My daughter is 9 and also has SCID. We tried gene therapy but unfortunately it failed. In July Katlyn received a bone marrow transplant. For us it is a slow process of waiting for her cells to come back. She has had some complications that include gvhd, chronic norovirus and severe malnutrition. We almost lost her but she is getting stronger each day. I pray for your little boy. He is so adorable and we were thrilled by the way you raised awareness to this terrible disease. Although scid is rare there are many of us in a few groups on Facebook and and a email group. Honestly it’s one of my greatest resources. Sometimes the doctors just don’t know but another parent or patient has offered their insight. Please join. We are a big SCID family and hold eachother up. I will pray for Seth and please know that I am here if you need a friend.

      Like

    • Carolina Saravia Gordash says:

      Reading this just made me so sad for you but especially Seth. I am so sorry you are all going through such terrible thing. I hope and pray for his health.
      Many hugs and kisses for Seth who is an incredible little boy.
      Carolina Saravia-Gordash

      Like

  2. Michael hild says:

    I watch for updates on Seth everyday and it breaks my heart that someone who is so sweet and innocent has to endure such horrible things 😦 I just can’t help but think about it all the time. I would love nothing more than to fly across the world to make him better if I could. he is a brave little man and I want to see him smile more and get better. I pray the lord takes things in his hands and makes little Seth better.

    Like

  3. LETICIA MARTINEZ says:

    OH MY GOD, WHAT KIND OF STRUGGLE FOR SETH AND YOU. ITS SO PAINFUL WHATS HAPPENING RIGHT NOW TO HIM. PLEASE GOD HAS MERCY OF SETH AND FILL HIM WITH HEALTH, HEALING ALL HIS LITTLE BODY AND EVERY DAMAGE ORGANS OF ANY DISEASE. I PRAY IN THE SACRED NAME OF JESUS, AMEN.

    Like

  4. Diana Weidner says:

    O Leanne,

    of course you don´t want him to suffer. And that´s why he´s being so brave and so good: He trusts you because he knows through experience that you both love him and want him to be fine. So in order to reach that goal (including the tantrums over menial things) he tries to be that special boy and keeps fighting.
    Hopefully his neutrophils will be quick in coming, still so many battles ahead.
    Are the morphins not working? I expected him to be in less pain with them.

    Diana

    Liked by 1 person

  5. uglybearanddirtybunny says:

    He said to them, “Because of your little faith. For truly, I say to you, if you have faith like a grain of mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move, and nothing will be impossible for you.” Matthew 17:20. Do not give up,Jesus with you all the time 🙏

    Liked by 1 person

  6. Jon miklich says:

    That boy is one tough cookie, when he beats this war he will become someone that will be strong with a great future. The courage you have as parents the day to day pain. I really wish this would go away soon.. Your little boy Seth brings me to tears on what he must suffer on a daily basis. I pray for you little man everyday.

    Liked by 2 people

  7. dianulya says:

    I wish there was a way that I could take his pain away. I am asking the universe to send him all it’s positive healing energy, so that he gets well and stays healthy and happy really soon. Be strong little fighter. You are a gift and deserve the best.

    Like

  8. Courtney & Shannon Hope says:

    Chemo is a necessary evil. It’s so painful and almost indescribable as a parent to put our little ones through chemo and watch them suffer through the BMT process even though we know there is no choice and they have to have the drugs pumped through their system. I am so sorry for your deep pain and for everything your son has to endure. Please continue to vent here and express what’s in your heart and mind so you have a release.

    Please tell your precious boy that so many around the world are cheering him on and that his story is motivating so many to live more grateful lives. His life has so much purpose. I pray to that he will have days where he can have tantrums over eating greens at dinner and be able to run outside in the sun.

    Arms wrapped around you tight.

    The Murphy’s
    :Shannon Hope BMT 2013

    Like

  9. lesliesantos says:

    God, please help this little boy. Oh my, how much can one endure. My heart aches for you as parents and breaks to have to watch your son endure the torturous effects of chemo while you stand with him. No words can even begin to express my deepest empathy for you. May God continue to comfort you.
    A tremendous huge hug to you and always much love,prayer , and faith to you
    XOXOXO💛💛💛💛💛

    Liked by 1 person

  10. Lynn says:

    You and your family are truly amazing. Thank you for taking the time to keep us all updated. Seth has touched so many hearts around the world with his story, and we’re all rooting for him! ❤

    Lynn
    Buffalo, NY

    Liked by 1 person

  11. Mon says:

    Reblogged this on Life of Mon and commented:
    Poor baby 😥 It’s just sad. I kept sighing. I wanted to hold my breath when reading this. I am sorry Seth has to go through this, I don’t want to think about how I would feel if my future children were having such problems. I pray to God he gets well.

    Liked by 1 person

  12. Kate Lewers says:

    I can’t even begin to fathom or relate to how you, any of your family or Seth are feeling right now so I won’t pretend that I ‘get it’, and it kind of feels like there are no words right to say because nothing will truly make it better until your baby boy starts to show some positive signs. But please know Seth and his speedy recovery are in my thoughts and prayers, as are you and your family throughout this hard and trying time. I look out for your posts every day with the hope that things have started to improve – bring on next week 🙂 Kate x

    Liked by 1 person

  13. Olivia says:

    Can’t actually write anything as speechless. Thinking of you all. A living nightmare for you all and poor Seth. Hopefully very soon you will all awake to a pain free calm day. Thinking of you and rooting for you all x x x x

    Liked by 2 people

  14. Christy says:

    Such brave and strong parents. I cried just reading this and seeing that photo, poor poor boy. Sending love and prayers to you all in this difficult time xx

    Like

  15. Caroline says:

    There are no words, but I will continue to pray for the little hero and have faith all of this pain will be for something.

    Hang in there, all of you.

    Like

  16. Sylvia says:

    Leanne, my heart breaks for you, and especially Seth. Please consider the following. My Aunt had an immune condition that made her hands look like that. Peeling and so swollen she couldn’t bend her fingers. A Naturopath gave a recipe that worked a miracle in hours, and was almost better in a day. Even if it helps a little, please consider trying it. It is 1 part Vaseline and one part corn starch. Apply a thick coat and cover with (latex or cotton) gloves. We used latex. We were desperate and so glad we tried it. Such relief for her. Will continue to pray for your brave little guy.

    Like

  17. Amanda Slater says:

    Hi- Just wanted to send some hugs and best wishes to you all. I’ve been following your blog for a little while now. He’s an amazing little boy and lucky to have such fantastic parents. Hoping that Daddy’s magic takes soon and Seth starts his recovery xxx

    Like

  18. Mark says:

    Chemo side effects are a bitch and it can feel like time has stopped still waiting for those neutrophils to arrive but the boost you’ll get from that first decimal point increase will be like nothing else. Upwards trajectory only, they will come. Positive thoughts winding their way to you right now from Liverpool.

    Liked by 1 person

  19. Tara powerville says:

    ThiS is the first I’ve read about Seth and it’s made me feel so sad. I hope for you all that a miracle happens very soon so he can start to feel better and you can see your little boy doing what he should be doing as a 5 year old. Much love and strength to you x x

    Like

  20. Cindy Austin says:

    Leanne has a mum my heart breaks for you and your husband to have to watch your baby go through this horrible horrible process and for poor lil Seth to endure the pain and misery of it all , but hopefully this is just a process for a ‘normal’ life for you all and you come out the other side with a positive outcome 😘😘 I love reading updates but I also get so upset whilst reading them I am just sat at my desk having a coffee thinking ‘Bloody shopping tonight could really do without it ‘ then I read your blog and feel very very humbled and selfish as I am sure you would love to just worry about doing the shopping !!!! Stay strong Leanne and everyone is praying that Super Seth soon begins to feel better 😘😘😘 thinking of you all xxxxxx

    Like

  21. Jenny Childs says:

    Like everyone here my heart goes out to your family. Seth is an incredibly brave and special little boy. He doesn’t deserve all this pain. Leanne and Nik, you are in my thoughts daily. I can’t find the right words to express how I feel. xxxxxxxx

    Like

  22. laura says:

    Praying for your beautiful boy and all the family May God bless you in Abundance🙏🙏🙏 Your lil man is so strong my heart goes out to Seth increadable brave little boy Bless him ❤️And you and hubby too watch him go through this awful time !!!!!! Sending lots of love hugs and prayers to keep you all strong through this hurenduz journey Praying you have your positive outcome X💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛X💛💛X

    Like

  23. Shelley says:

    I have just cried reading this post – my heart absolutely goes out to you and your beautiful, wonderful little boy, Seth. What a brave little soldier he is. Life is so cruel sometimes that he (and you) are having to go through this, but I hope that one day very soon you can all wake up to Seth well on the road to recovery and not in this awful pain he is in right now. My little boy is 13 months old and is also called Seth, so I hold a special little place in my heart for your lovely little boy. I wish there was some way to make all this easier and less painful for you all. Sending you lots of love and special get well wishes for Seth xx

    Like

  24. catherine says:

    I know what you are going through my son also had scids but now he is cured I will pray god will give you the strength to get through this he is a very strong little boy your a strong mom please take care of your self also so you can be strong for seth praying everday

    Like

  25. chiaradom says:

    I’m so sorry for you and for Seth. I’m a mother too and I can’t imagine how hard it is to live with the pain of a child. You’re very brave! I will pray for you all.

    Like

  26. Pat Quinlivan Moe says:

    So sorry to hear that Seth feels so wretched A child’s pain is so hard for parents, even for the right reasons! You are so right… he doesn’t and shouldn’t feel like he has to be brave ALL the time. It is o.k. to tell him you are sad too. Prayers every day coming from South DakotaUSA.

    Like

  27. Sandy Kalpakoff says:

    My heart goes out to you and I hurt with you for your precious son Seth. Prayers continue to flow to God for His healing hand in Seth’s recovery and his future as the playful, loving little man that he is. Your family has become a daily part of my talks with God. Bless you all. Hugs.

    Like

  28. Fam. de jong says:

    If I could, then I would be a part of the pain and worry of Seth want to take on, as a parent of a child with cancer, I know what’s going on in your family. We wish you all the strength and love for now and in the future.
    Family de Jong
    Kinderdijk, Netherlands

    Like

  29. toby says:

    Come on Seth, you little trooper… I wish I could take your place and take the pain for you, keep fighting you super cool little dude, you have inspired many and my thoughts and prayers are with you x

    Like

  30. Susan says:

    Seth, I am so sorry that you have to go through all of this. I know it sucks..BIG TIME! I am praying for your hands and all your pain. I pray that as you go through all this icky pain that the chemo does its job and you are made new and completely healed after your BMT.
    Just a little while longer. Hold on.

    Like

  31. Helen Caldwell says:

    I’m so sorry to hear that Seth is suffering so much. My heart goes out to all of you. I know I don’t really know you but I am a friend of Sarah’s & she has asked me to pray for Seth so I have been praying for him. I have also asked my church group to pray. I hope that’s ok with you

    Like

  32. Kathy says:

    Dear Mom,
    You and he are inspirations to all. We are 3 co-workers and our families that keep your whole family in our prays every day. I know it isn’t much, but we wanted you to know that we support you in our own way, including wearing yellow on Fridays. If possible, would you please kiss Seth for us and when he is well enough give him a big hug from all his adopted family in Lake Charles, Louisiana USA. May you soon be well and able to go home. Hope to see a photo of you going home soon.
    Many prayers, hugs and love going your way.
    Your Cajun friend,
    Kathy, Michelle, Tressa and families

    Like

  33. Clalili says:

    Hey Seth – i am sitting in front of the computer and I am crying about the post of your mom and the pic of your hands – also i do not know you and your family in personal. But i am following the posts of your mom and dad since the #wearyellowforseth and try to send you some of my personal power over from Germany. I wish you and your family that each day that comes will be better than the day before and that your immune systeme grows in each second just a little bit. My thoughts are with you and your family. I send your mom the sentence that helped me through a difficult personal situation – Think – a piece of your way is beyond you – another piece is before you – if you take a rest it is only to strenghten your position, not to give up
    ( Augustinus Aurelius ).
    Dear Seth get well soon!

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s