Seth's Leukemia journey - Updates

Life getting back to normal

21 May 2023

Hello everybody, it has been a while since our last update.

Well the last year all seems like a bad dream and it does not feel real as we are all back together now settling back to normal life. Seth is doing really well and he has a nice head full of hair now. He has monthly trips to Palmerston North hospital for a check up and they are happy with his progress.

Seth has just started doing weekly boxing lessons which will help him to build up his muscles again and gain more fitness which he is enjoying.

Once again Lois and myself will like to thank everybody for their support.

Regards Darin and Lois

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Latest news about Seth

26 February 2023

So it has been a while since we updated. Back on the 8th Feb we went up to Starship for a dentist appt and also the biggy having his Hickman line come out. That all went very well. This has been freeing as he now only needs monthly blood test which can be done at Palmy Hospital. The latest Chimerism test still show that it is 100% Logan in Seth.

Bloods for this month are looking good too. His haemoglobin is now in normal range and his platelets and neutrophils are coming up too.

We will be due back in Auckland at the end of March for his 6 month check. Which will include bloods and a lung function test. From now on they will be keeping an eye out for long term side effects caused by the treatment he has received.

Seth is now also sporting some new curly locks. :)

Thank you for all your prayers and support during this time.

Darin and Lois

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Seth's first big milestone

7 January 2023

Thursday the 5th was Day 100. First big milestone. Lois and Seth were up in Auckland on Thursday for bloods and to meet with the Oncologist.

Seth's bloods are looking great. They are happy with how he is tracking. Neutrophils are up and stable. Chimerism test still shows that it's 100% Logan in Seth which is what they want.

They will be home more now and have weekly visits to palmy hospital for bloods and hopefully in the next 2-4 weeks he will have his Hickman line out. (The last time they planned to have it out surgery was cancelled).

Our family is looking forward to Lois and Seth being home more and starting our new normal.

Thanks once again for everyone's prayers and support

Darin and Lois

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Home for christmas

18 December 2022

Hello all,

Its been awhile since our last update, Seth's progress has gone well lately in the last 3 weeks he has not felt nauseous or vomited at all which is a good change. He is now get up and walking around a lot more now which is good, it is helping to slowly strengthen his muscles. Last Tuesday Seth and Lois were aloud to come home to attend Pop Wallace's funeral in Wanganui on the Friday. They will be going back up to Auckland this coming Tuesday to prepare for surgery on Wednesday to remove his Hickman line if his blood results are ok. If they do go ahead with surgery and everything is looking good they will be aloud to come home that night and be home for Christmas They will head back up on the 5th of January for a check up and bloods tests.

On the 5th of January Seth will reach his first milestone after the transplant which is 100 days. So looking ahead we are hoping it might be only weekly blood test for a short period of time and then move to fortnightly blood test, These tests will be done in Auckland.

Lois and I once again want to thank you for everyone's support during this journey.

Cheers

Darin

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seths update

20 November 2022

Hello everyone here is update on Seth.

Day 54 post transplant. 💛

Today is also 10 weeks since we came up here in September.

Time is a funny thing. It feels like a loonnng time but at the same time it feels like time has gone by quick.

Seth was discharged on the 9th Nov. It was great to be out and back at Ronald McDonald House and timed nicely with Darin and the boys coming up for a week.

However, we only managed 6 nights at RMH before having to be re-admitted for 2 nights for a fever discharged again but back in 2 days later with a fever and abdominal pain. These up and downs are part and parcel with this journey. Hopefully things will settle down soon.

Other than these bumps. Seth's bloods are doing well. He is making his own hemoglobin and platelets meaning the new marrow is engrafting. Every so often he needs a GCSF which helps boost his white cells.

Seth has lingering side effects from the chemo which is called foot drop this will just take time to resolve and walking more will strengthen those muscles affected. Seth uses the wheelchair for long distances and walks when he feels up to it.

Lois and I wish to thank everyone for there support during this time.

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Seths update

24 October 2022

Hello Every one , here is an update on Seth journey.

It is now 4 weeks since Logan donated his marrow to Seth and in the last week Seth's blood is now showing signs of white blood cells and his neutrophils are going up which is a great sign.

The last two weeks Myself and the boys went up to Auckland to be with Lois and Seth. The first week was pretty hard on Seth as he was in a lot of Pain ( they had him on 6 different pain meds ) and now have to slowly wean him off those. the second week was a lot better for him less pain and Me and Lois were able to do shifts through the week. So then Lois could do school work with the boys and have time away from hospital life.

Hopefully in the coming weeks Seth's blood would be looking good enough for them to leave the hospital and move into the Ronald McDonald house, which will be a little closer to normality.

Myself and Lois want to say thank you for everybody generosity and support ,

it means a lot to us.

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Transplant day

27 September 2022

Hello all.

Well it has been a busy few days , Logan and myself had to drive up to Auckland on friday after our flight was cancelled then got a flat tyre only to discover the spare tyre is the wrong size stud pattern .😫 but transplant day has arrived 😁 Logan went into sugary this morning and it went really well they took 1litre of marrow 😲 and now Seth is recieving logan marrow over the next few hours. Lois and myself would like to thank everybody for their support and prayers.

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Bone marrow transplant journey

29 August 2022

Hello all

We are now about to start on the bone marrow transplant journey, there were two options on the table. We have a full match in Germany and Seth's brother Logan is a half match. In about a weeks time Seth and Lois will head to Auckland to start Radiation. They have decided to use Logan as the donor as Seth is ready now to start the transplant process. The German option will take up to 6 weeks to get to NZ.

Logan will have a operation to donate marrow for Seth, this is a overnight in hospital for him.

Seth and Lois will then stay in the Bone marrow unit ward for 6 weeks and then will be in Auckland for up to 6 Months as Seth will need to be close to the Hospital for monitoring.

This past week Seth has been getting over Shingles and spent 5 days In palmy hospital on IV antivirals. He is on the mend now. It has given us extra time at home because they needed to wait till he was over shingles before starting the transplant.

Thank you for journeying with us and your support

Darin and Lois

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Latest update

19 August 2022

We have learned Seth will need a bone marrow transplant. Part of that process is have intense chemo. He has recently finished a 2 week cycle of chemo. Seths handled it mostly well. The first 5 days he had loss of appetite and 2 days where he vomited a couple of times.

He had a 2 day break to recover then another 5 days of chemo. These last 5 days he's felt fine. Mainly tired and slowly eating more.

Now we just wait for for his marrow to recover before he has another bone marrow sample to make sure they've got him under the 0.1% (it was 0.2% at last check) The boys and Darin and I were tested to see if we will be a match. We just found out the one of our boys is a half match and a young man in. Germany is a full match.

We don't know who they will use yet but they are preparing for both options.

Seth is also enjoying his make a wish gift too

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Latest update

2 August 2022

Today we met with the oncologist to talk about the plan.

The next 3-4 weeks will be a challenging time. The chemo will be more intense basicly wiping out his immunity. This will be combined with whole body radiation. We will be admitted to the ward during this time.

The goal is to wipe out the last of the cancer cells left as they have been resistant to the other chemo.

The downsize is the side effects.The first week the chemo will make him feel pretty rotten.

At the end of this cycle they will check his marrow again to see what progress has been made.

The boys will be tested to see if they will be a match for Seth.

Thank you all

Darin and Lois

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Seth's update 27/07/22

28 July 2022

Hello Everybody

Here is an quick update on Seth's journey. This week Lois and Seth went up to Auckland for chemo and a bone marrow biopsy. On Monday there was a complication with the Chemo where he had a reaction to it which meant they had to stay a little longer in hospital, but they are back home today. We received a phone call today from the Oncologist looking after Seth's case and he gave us the results of the biopsy and unfortunately there has not been much change in percentage of leukaemia in his marrow. It has gone from 0.3% to 0.2% , so with this we are now going to go down the path of a Bone marrow transplant. Our 3 other boys will be tested to see if they could be potential donors. We will find out more info in days ahead. We thank you all for your support.

Darin and Lois

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Family coming together for Seth

10 July 2022

Shave for Seth

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Family coming together for Seth

10 July 2022

Hello all.

Since our last update Lois and Seth have been only traveling up to Auckland only once a week for two days as we now can get some of the treatment done in Palmerston North, which is nice.

The treatment side is going well at the moment for Seth , it is more the mental side now as Seth is getting tired of going to the Hospital to get poked and prodded. Especially when the chemo has a nausea side effect, he gets very down and does not want to eat or drink which makes it hard on Lois and I.

This weekend the family came together to shave there heads in support for Seth , and Lois and myself would like to thank everybody who helped to organise this event and all who participated. Seth was chuffed to see all the bald heads.

Thank you all for your support

Darin and Lois

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Update on Seth

18 June 2022

Update on Seth.

This week Seth had a another bone marrow sample to see how much cancer cells were there.

A bit of back ground.. at the last bone marrow results at the end of May.. he still had 26% cancer cells in his marrow which meant the chemo in the first 5 weeks hadnt been as successful at getting rid of the cancer. This changed his treatment to more aggressive chemo.

So the results of this weeks bone marrow shows that he now has under 1%!!!

Praise God!!🙏🏼

We couldn't be happier. He is tracking in the right direction. ❤

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Seths update

14 June 2022

Hello all , just a quick update on Seth. This week Lois and Seth are up in Auckland till next Tuesday receiving treatment. Yesterday they operated on Seth and have taken a Bone marrow sample for testing to see if the Chemo has worked on getting rid of the Leukaemia, we will know the results on Monday hopefully. If the results are not what the hospital want's we will have to start looking at a bone marrow transplant :( So hoping and praying that I will have good new next week .

And thank you all for your continuing support. cheers Darin

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Seth's update

24 May 2022

Just a quick update on Seth's journey. But first Lois and myself would like to say Thank you sooo much for everybody's support it has been overwhelming.

Since the change of Chemo drugs Seth was doing well , gaining weight slowly and becoming his cheeky self again.

He has had to have a couple of blood transfusions due to having low haemoglobin but was doing ok other wise. In my last visit up to Auckland he was feeling up to going to the Zoo for a visit , which was nice to get outside.

Today had drama's for Lois and Seth in Auckland as he was having a certain Chemo drug when he had a reaction to it and all of a sudden there was 10 doctors and nurses treating him and monitoring him, he is ok now . But the 3 days they were going to be up there for is now turning into a 7 or more day trip. You just have to take day by day at the moment with his treatment.