Day 133: The Results Are In

It has felt like we’ve waited forever but i’m pleased to report the results are in.

MRD Results Are In

On Friday our consultant called to let us know that they had the results and would like us to come in on Monday. As you will know, we’ve been waiting for what feels like forever to get to this point: Day 127: The Waiting Game.

She confirmed that it was good news and whilst we still have a long way to go Bilbo’s leukeamia has reduced as they had hoped. I confirmed Rich and I would head into Oxford on Monday to sign the paperwork for the trial.

Relief

As I hung up, I burst into tears. Happy tears, tears of relief, tears of guilt. This result has weighed heavily on our minds, my mood. It has been making me ill. I’m grinding my teeth, i’m exhausted and i’ve been so grouchy (sorry Rich)

This is the best we could have hoped for.

Clinical Trial Outcome

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, the results are in
This is what the parent room looks like on level 0 of the children’s hospital. I’ve taken calls in here, Rich has made tea, i’ve cried in here, we’ve waited in here and today we took our meeting with our consultant to get the news we’ve been waiting for.

I shared in a previous post about the BIG decision we needed to make about the trial: Day 65: Decisions Decisions – Clinical Trials.

Getting the MRD results means we can finally get randomised and find out what interim maintenance (the next 8 weeks) looks like for Bilbo and also find out what maintenance (the longest part of treatment approx 3 years) will look like.

We headed into Oxford: it felt weird to not have Bilbo with us. And we waited…

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, the results are in
Rich was delighted to find a giant cup in the parent room to make a cup of tea in. I sat and counted up all the beads of courage Bilbo has currently earned at the front line half way point.

Standard Capizzi

Bilbo got the standard treatment path (Capizzi) for the next phase (interim maintenance) this means it’s all outpatient and no hospital stay!! THe downside is he will need to continue to have the methotrexate lumbar punctures during maintenance, every 3 months.

All the info about the different phases are on this page: ALL in Children Quick Links and Resources.

Maintenance

BUT we don’t have pulses during maintenance. This means he won’t have to have steroids and extra vincristine (chemo) once a month. The most exciting bit is that this means there really is no reason to keep his wiggle (central line) this really was the news we were hoping for. Bilbo is struggling with the line. He hates the dressing change we have to have weekly.

He hates having to have it put in a sandwich bag and then taped to him for a shower or bath. My boy is a water baby through and through so we hope this will give us a small grain of normality back. When we reach maintenance.

Now what?

We’ve accepted the path. Of course we can back out at any point and change our minds. But we’re happy, this is the best possible outcome we could have hoped for.

I did have a wobble – if pulses are confirmed at the standard protocol after the trial are we crazy to not to take this option?

Moving to regimen C we’ve had all the chemo thrown at Bilbo. He will still have methotrexate throughout maintenance so we’re taking it as the right course for Bilbo. So Rich and I are going to stick with what the randomisation has chosen for us.

Long road ahead

Whilst we’ve rejoiced in the results and sighed a huge sigh of relief. We are very aware the next four months are still going to be hard.

We’ve basically made it to the half way point of front line treatment. Bilbo needs to now complete as many weeks of treatment all over again. He has multiple rounds of chemo to get through before we reach that light at the end of the tunnel!

The protocols look challenging. I don’t know whether this is because we’ve done some of it before and we know it was tough. Or because some of it is brand new and we don’t know what to expect.

How’s Bilbo doing?

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, the results are in
Zog was a hit for everyone! Even H who was scared last time we went to the theatre at Christmas. Bilbo was a different child, he laughed out loud, stood up and danced, shouted out and had a smile from ear to ear.

He’s mostly oblivious to everything that happened today. He ate a huge breakfast of x2 slices of toast with marmite, a bowl of coco pops and a brioche. We’re delighted he’s got an appetite.

I’m less delighted about the X3 meals he requests – korma curry, spaghetti bolognese and chicken noodles over and over. But he’s eating and that is what matters.

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, the results are in
After Zog we headed to the MK lego build. Both boys made a pirate/viking ship.
And met Emmett.

He had a good weekend. He’s been a whirlwind at times. But then at other moments he has looked absolutely exhausted. Gymnastics was fun on Sunday morning but he didn’t do much for the rest of the day.

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, the results are in
We had fun taking selfies at the gym.
godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, the results are in
And Harrison enjoyed terrifying us all by climbing the wall very quickly right to the top.

Mummy Cuddles

He’s needed a lot of reassurance, a lot of mummy cuddles and a he’s still got so many questions. In particular he’s obsessed with why he’s got leukaemia? Why him? how did he get it? He told us on Sunday that he thinks it is because of germs. And talks endlessly about getting better fast and not being different. Sometimes he wants people to know about his wiggle. Other times he is worried about people laughing at him.

Every question is like a knife to my heart. The curiosity from him never gets easier.

What Next?

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, the results are in
We are delighted with the results but we are fully aware that we have a long road ahead.

We continue to enjoy the chemo break. And we head back to Oxford on Monday to start interim maintenance. We will continue to take each day and each week as it comes.

Right now we’re basking in knowing what the next 4 months look like, we’ve got this as a family and Bilbo is going to kick ass!!

Questions

Over the coming weeks I’m going to add to some of the blogs i’ve already written to help other families, friends and employers of a family with cancer.

I also have a few posts in draft that I will share for example “How not to suck as an employer of a family with cancer”.

Are there any questions you’d like to ask? You can post a comment OR send me a private message. I’d love to make sure that these blogs are as helpful as possible.

DM me on Instagram

PM me on Facebook

Or good old fashoned email godberstravel@gmail.com

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11 Responses

  1. Alyson Long says:

    Great news Kim.

  2. Hayley says:

    Fantastic! You and your family have been in my thoughts H x

  3. Alison Hedger says:

    So pleased that you’ve had good news for Bilbo, Kim. A boost to keep you going, and good luck with the next phase. Xx

  4. Maddy says:

    Awesomeness!! Bilbo is always in my prayers as well as the familia!! 🙏🙏🙏

  5. Heather says:

    Wowee! So pleased for your sweet boy and all of you. Enormous hugs all round! Thinking of all of you, often 💕

  6. ALLEN ROSS says:

    Wonderful news Kim

  7. Rachel says:

    Such good news!

  8. Kristy says:

    Really pleased you have the news you have been waiting for! Onwards . . . Xxx

  9. Ted Hopton says:

    Hoping this works well!

  10. Heather says:

    Excellent news, Kim! Sending love and thinking about you are your family often.

  11. Lisa says:

    Beautiful boys x

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