Today: T+49

49 days post transplant and Seth is doing ok really. Better than expected which is great!!! It’s June and we are halfway through 2015.

I have had a bit of time at home the last week as Hugo has had a cough and I had to return to the dentist (joy!). This was hard leaving Seth, but Hugo thrived. It made me realise how much this effects him as well as Seth. He is only a baby but he has loved seeing my best friends little boy this week (who is 2 weeks younger than Hugo). It got me thinking about what this year should have been. I should have been on maternity leave at home, taking my new baby to baby groups, meeting my friends and spending time helping our new baby grow and become part of our family.

Instead, we have spent the first half of this year giving Seth a chance. So I think it is maternity leave time well spent. Hurrah to the first half of 2015.

In himself, Seth is doing great. He is full of energy jumping all over daddy. It is clear he has a bit of cabin fever – in that he is bored of being in his hospital room for most of the day. He has time in the physiotherapy gym for 3 half hour sessions a week which he absolutely loves. We also get out to the park and make boats to race on the water.

Ryder had a hickman line fitted this week. Doctor Seth checked his bloods – all with a sterilise field and alcohol wipes – ‘got to be clean daddy’.


Walking the ‘snake’ in physiotherapy

  

One of Seth’s favourite physiotherapy exercises – racing to move the beanbag animals from one place to another faster than daddy or mummy!

Today we went out for the longest time yet, about 2 and a half hours and we went to walk around the fair ground that has been set up. Seth loves looking at it (he cannot go on!!) and he keeps talking about how when he is better he is going to go on the fair. He has also become interested in a skate park that we pass everyday and is saying he wants to ride his scooter on it.

Greating Grandma speeding ahead on his scooter. He had not seen her since transplant when the chemo was making him feel pretty ill. So he did not speak to her.

It is so great to see him how he is at the moment. So full of life. He has always been a happy, smiling boy, but he has never quite been a cheeky child of his age. Until now. I sometimes find my self watching him and smiling that finally I am seeing a child emerge.

Hugo learning about Seth’s face – through a protective rain cover…

Infections:

At the moment Seth is testing positive for Noro Virus,  Adeno Virus and the Human Herpes Virus 6. He has been on treatment for the HHV6 infection for 2 weeks, initially the virus went from 10 to the 5 in the blood to 10 to the 3, but it has now gone back up to 10 to the 6. There is an alternative treatment which also treats Adeno virus which he is now on. This is a once a week treatment to start with and will then drop to once a fortnight. The positive thing is that at the moment he is not showing any signs of illness. No temperature’s or feeling unwell! – yey!! He is vomiting every day, this is usually just once a day and we are not sure which is causing it. It could be the mentioned virus’ or low tolerance for milk feeds. But it is not significant so at the moment we are just monitoring it.

Hands:

Look at these bad boys! No more bandages. He has better movement in his fingers that he had before because the skin is not thickened from GVHD. At the moment his old damaged nails are growing out and new nails are coming through. This is common as when you are really ill the body stops doing things that are not totally necessary – like growing nails.


       At the moment Seth is still needing platelet and blood transfusions, but these are at the moment getting less frequent. I don’t want to get ahead of myself, but, I would love for a time to come where he does not need them again. He has been having 3 or 4 weekly blood transfusions since September 2014 and platelet transfusions since October/November at a similar rate.

So, things have changed so much in the last 6 months – surely as a BMT parent 49 days after transplant I can start to relax right?! Well, maybe not quite – I have graphs so I can see any trends or changes in his stool output, Red Blood Cell level, Platelet Level and Neutrophil levels. This is probably not necessary – but as I have said before you are sometimes armed with too much information. I have really found the graphs helpful for me to see the overall picture, rather than panicking because his neutrophils have dropped two days in a row, or he is still needing blood transfusions.

At the minute I feel a bit like we are sat waiting for a train that we don’t know where it’s going. We have a few virus’, we have a little bit go GVHD, we don’t know if the Thymus is working or not. Only time will tell on these. Today, these problems look like they are being managed….but, what will tomorrow bring?

Don’t get complacent and take it day by day

Advertisements

35 thoughts on “Today: T+49

    • garyparkerauthor says:

      When I had problems with my liver, pre transplant, I would eat about a level teaspoonful of liver sausage, the poor mans Thymus.
      It really made me feel better for a day or two. I chopped ot up into chunks and froze it. I took it daily when I was feeling aweful. I drank a lot of raw milled carrpt and vegetable juice within 10 minutes of milling. Be careful if you do this because it os a raw, ground grown, fresh fruots and vegetables. How are you getting calf Thymus? It was very rare 12 years ago. Best of luck to you all, especially Seth. I still wear yellow for Seth every Friday!
      Gary Parket

      Like

  1. Linda petch says:

    Oh I love reading about Seth. If I’m feeling down and having a bad day it picks me up and makes everything so tolerable to see how he is coming along. He is brilliant. Such a joy x

    Like

  2. Tracy Coffey says:

    The progress you are making Is fantastic I love reading these updates about Seth he is such a wonderful little boy. X

    Like

  3. Mitchy (Michelle) Leinen says:

    Love that his little hands don’t have bandages. Those eyes, oh my gosh, his eyes. They are truly just the most beautiful thing I’ve ever seen. And I just say thank you to the Lord daily that my little hero didn’t lose that little blonde eyebrow. I have thousands of questions but am just going to ask one. Is he taking any food in by mouth? Or is it still just his milk feeds?

    So glad you go to spend some Mommy time with Hugo. You all take care and thanks so much for the posting. Love you Seth my little man. HUGS and LOVE from South Dakota, USA

    Like

  4. Meghan Mack Lindenfelser says:

    Thank you for sharing! My heart breaks with every set back and leaps for joy with every victory! I pray every time Seth crosses my mind so daily or more. Keep fighting hero you are brave beyond measure!!

    Like

  5. Marita Healy says:

    It’s a joy to read about Seth. He’s an inspiration to us all. I’m delighted to see him looking so well. Hopefully things will continue in the right direction. Take care of yourselves.

    Like

  6. Beatrice says:

    Love reading about all the successes,especially after all the stress in that little mans life!!! Yay! He’s getting stronger and stronger! All the best to you all!

    Like

  7. Missy Washburn says:

    I think your year so far is quite remarkable … A new baby and the amazing strengh you and your husband have shown Seth … No words can begin to describe. I pray one day you can look back on 2015 as the year your family taught the outside world the true definition of being a parent. I know there are so many stories out there of children fighting a battle they did not choose…may all who are in a battle find such determination and strength to dig deep and push on. Scooter soon Seth! 👍Thank you for sharing and the pictures are wonderful! Hugs from Memphis, Tennessee

    Like

  8. Sandi Warner Burk says:

    WHAT WONDERFUL NEWS! I cried HAPPY tears as I looked at these outstanding pictures of Seth’s healing process. They look like you could pick them up off the screen so Seth sure has a great Photographer keeping us informed of his progress with pictures that will be kept in our Heart Albums. You all have become very special friends and although we may live far apart our Hearts are connected with Love, the greatest healer in the World. Seth you are just amazing and how we love your beautiful smile and admire your courage. In getting to know you online we have learned a lot from you and that courage. Straight ahead!
    Sandi Warner Burk in Yreka CA

    Like

  9. Linda V says:

    Thank you for the update from your friends in Lemont, il….we are so happy just seeing Seth enjoy himself as a little boy. Our prayers continue and we hope each day gets better and better for Sweet Seth.

    Like

  10. LoriDeFrias says:

    I just loved seeing Seth on his scooter and his getting more and more active. I cannot imagine how stir crazy he must be, but watching hes daily activities increasing week over week just brings a smile to my face. Keep fighting Seth….you’re everyone’s Little hero!

    Like

  11. angelkhandra says:

    Oh, his beautiful, beautiful little hands! And his happy smiling face! What joys these are to see – that his hands aren’t causing him any more horrible pain (I remember you writing about how hard it was for him) and that he is being a CHILD at last! It is so wonderful to see him enjoying his life, as hard as it has been until now. To go through such adversity and to embrace life with such joy in its aftermath – well, we could all learn something valuable from this!

    We love you so much, little Seth! Keep on sportin’ the coolest eyebrow ever in the world! Keep on being happy and sunny and YOU!

    Love from Kari and Kimo the dog in Minnesota 💛💛💛

    Like

  12. Donna Benoit says:

    I was thinking about Seth a lot today.. So happy to see his progress photo’s… Love this little man… I continue to send my healing energy to your beautiful boy daily… it does not deplete me… In fact it makes me have more positive energy, because sending love and healing is a natural gift our soul wants to do. I don’t know if you
    are aware.. But there was a study on very sick people in Hospital…. People that were prayed over… even if they were unaware of these actions… fared better than people who were not. Seth you are loved the world over… We will believe you are going to thrive….. Love you . !!!

    Like

  13. Jenny Childs says:

    A previous reply said ” 2015 as the year your family taught the outside world the true definition of being a parent “. Very well said and something we should all take on board. All good wishes to you all.

    Like

  14. Meg McCrae Craig says:

    Looks like you do a really great workout in the gym Seth. Your hands are looking great too.
    Hope this weather gets better so you can spend more time on your scooter in the park.
    I think you might be a doctor when you grow up, you look and sound like a real pro with that Hickman line, and Ryder looks happy with it as well.
    Take care our little Super Hero Seth, looking forward to hearing from you again xxx
    😀 🚜 💛 🌟

    Like

  15. Sandy Kalpakoff says:

    Incredibly happy to see Seth’s growing energy and abundant pleasure in doing activities! Sending continued prayers and encouragement and love to this very special little boy and his devoted parents. Enjoy each little accomplishment and every day as Seth continues to get better! Love his healing little hands and fingers. Hopefully the rash is gone?

    Like

  16. Lesley says:

    The photo of Seth playing on his scooter is just amazing esp when U look back to photos a month ago. Astound me!!!! I love the updates and it looks like he’s striving which is great. Also Hugo is getting so big – I do feel for u too – trying to do the best for everyone. I take my hat off to you. 💛💛💛. Lesley-Anne x

    Like

  17. Kathy Somers says:

    Dear Seth, or should I say Dr. Seth 🙂 I see you taking care of Ryder in your picture. Wow you know everything about keeping everything clean, and how to check blood and everything. I bet your going to be either a Doctor or a Fireman when you grow up aren’t you?

    I was showing my boys your scooter, they thought is was pretty awesome. My son Ben loves the color of it. When he was your age he has an orange one. But he likes the color of your better. 🙂

    We are so happy that your feeling so much better and that your getting outside and your hands look wonderful !!

    How do you walk on that ‘snake’ in physiotherapy? I would fall right off that haha Your Awesome !!

    Your pictures that your mom posts are wonderful, we love seeing them. So happy that your feeling better. Soon when you feeling MUCH better I am sure you will to the fair. Remember before you get on any of those rides don’t eat to much. My son did that once and he got really sick in his belly YUCK…he won’t do that again 🙂

    I hope you and your Mom and Dad have the best day today.

    Sending you lots of Love
    From Canada !!
    Kathy, Philip and Benjamen

    Like

  18. claudia says:

    Go Seth Go!! It’s been a while since I’m following Seth’s history, and I’m really glad that he’s doing so well. I hope everything that comes follows the same path to Seth’s recovery. I’m from Mexico and I’m a big fan.

    Vamos Seth!!

    Like

  19. fulya akipek says:

    Superhero and his wonderful family,after seeing your photos I have a big smile on my face and we send our love and good wishes from İstanbul, Turkey!!!! Seth is looking so good, hope each day he will be much much better…This is a big hope and lesson for all of us who share your process to take everyhing “day by day!” Thank you for sharing with us, and hope that all of this positive energy collected here is bringing something good to you…

    Like

  20. Sue says:

    I am happy that you enjoyed some quality time with Hugo. I have some understanding of how this brought about mixed emotions, but I hope that it also provided you with some strength. I am so glad that Seth has Hugo and that Hugo has Seth. Two beautiful boys.

    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