1 year ago today we were told to go to the hospital urgently. I try to reflect back on how that afternoon changed our lives forever. And how busy I thought I was before all this happened! Ramona-Jane is in maintenance now. An achievement but I'm not sure about it yet. The easier side of it has not yet set in.
We have now been in Christchurch for almost a week. Unfortunately Ramona-Jane had a seizure last weekend. It was the scariest thing me (as Mum) has ever seen! Just awful. We were life flighted down to Christchurch for a range of tests. All results not back yet but seems to be a toxic reaction to one of the chemos. We won't have that one again! She is now recovering from a brain injury and will most likely be back to her former self in a few months.
We are 11 months into our journey. We are approaching the 1 year mark, the day our world changed forever. Ramona-Jane is currently not making progress as she is not 'count recovering' to move forward with treatments. This means, she is well in herself/ her normal self (let me stress HER new normal here!) But her platelets in particular are not recovering after recent chemos, so they cannot move forward to the next chunk of drugs. She has had several recent hemoglobin and platelet transfusions, which perk her numbers up, but then they crash again. This is not overly concerning to the health professionals, mostly a normal experience for patients and doctors while they 'wait out' certain recovery times. But I find it very hard to feel like we are not continuously moving forward! More spinning our wheels at the moment. And we have to not overthink any of this, how hard these drugs are on our children's bodies.
I am unable to work during this time. (Even this week, we were told hospital... Mon Tues Weds Thurs... but then at the visit on Tuesday, they cancelled Weds and Thurs and asked us to come Fri.) It is chaotic and completely unknown, Ramona- Jane and Mum continue to roll through these changes.
I am also asking that you please promote our donation page in your own communities. One last push for the page. I know the holidays are coming up, please consider our family and a donation during this time. To help with our holidays.
Things continue to roll forward. I feel like life is absolutely beyond relentless! About 3 appointments a week for Ramona-Jane at the moment, but I have been told we will be going daily for 2 weeks starting next week if her numbers stay strong. I feel so so busy, as on any given visit I tend to 'carry her' through the experience. With her emotions often crashing! I usually am up to the challenge, but lately as Victor has his own challenges, I feel like I live life in a constant state of heightened awareness! Fight or flight!
The steroids she is on have finished up but the hunger is still ongoing! She woke up last night (not a new thing) needing a middle of the night snack. She is pleasant in herself. But endlessly hungry. In better news, she learned to swallow a pill in this phase! Taking 4 pills in 2x a day sessions will do that to you it seems.
In news from the other children... Elliot and Sullivan both get raving reviews from their schools. Sullivan seems to be experiencing the teenage funk as he isn't in the mood for anything, and has definitely learned about sleeping in! Victor is also good at school, but his routines are hard for mum to handle. Trying to teach a timeblindness child about the idea of being late, is very tricky! And the whole idea of a being a flexible family member in 'Team Kerr'.
Ramona-Jane is on her final week of 'blin'... the medicine where we are home have to manage a backpack. She has felt good during this time and a few weeks previous, so we have enjoyed a perky girl who is enjoying her toys, her siblings, and all things play! We have had 3 emergencies during this medicine, so while the phase as a whole has been more straightforward... it is definitely a time when at a moment's notice, everything stops and we have emergency trips to hospital! Again, I will be glad to put this phase behind me. Last week the hospital changed what type of port needles they are using, so Ramona-Jane was introduced to a new needle, which had to then be inserted, as the medicine has to run continuously. This was super upsetting, as we had had no warning, and the newer needle doesn't sit as flush on her skin. So the chance of a snag feels eminent! 1 week to go though...
I have been warned that the next phase is harder, and they expect it to slow her down quite a bit.
She shared while watching a show a character (while talking about her diabetes on the show) ... "I can really relate to what she said Mum, she said, 'once people know I am diabetic, that is ALL they talk about it with me'... that is how people are with me", then adding "but not my friends, my friends never talk about it". She is still a 10 year old little girl, who has many thoughts and many dreams and is great at her play.
10 June (Day 204): Blin 2 started today! We started the day early with an IT (drug in theatre, semi- regular thing… directly into spinal fluid). I learned today that when they remove some of the spinal fluid they have regularly tested that for the leukemia. And they are happy with her progress! She then was put on blinatumamab, an immunotherapy she has had before. It is the non-stop drip for a month long cycle. Last time we had lots of hiccups with this machine, so wish us luck! It is a medicine that usually makes kids feel good, so let's hope we stay on the trend we have already been on for a few weeks now.
She also asked for her NG tube to be put back in. (after she spewed it up a few weeks back, she has been having to have her medicines orally). The NG tube allows her to bypass this, which is quite a selling point, when some of the medicines taste gross. But so far, her eating has been good enough that we haven't had to run her feeds. So we are in a pretty simple period. I think the next phase is harsh, so will sit in simplicity as it is what we have now!
I sit here at dinner time in CHOC, and Ramona-Jane is sleeping next to me. She is tired. And has had the best week since all of this started… mood, eating, energy… anyway you look at it. She has eaten *normal* amounts of food today and we played a board game. And now, she is laying down, asleep and I can hear her snoring. We arrived last night, and the methotrexate is running through her now, it runs for 24 hours, and then we wait a few more days to flush it out. This is our last trip, so we are both already full of emotions. I feel at peace with moving to the next phase. My *first* friend in here, a Mum to a little boy, got to escape today too… to head home for a few days... So very bittersweet to bring the first of the goodbyes! We plan to see each other again, somehow, in a very different world to now.
Monday was 6 months since we received the phone call to get to hospital asap. I am not sure if that feels like the right amount of time, or like it was longer ago or like it just happened. But when I look back at pictures and reflect I am blown away by the amount of things Ramona-Jane has had to endure in that time... theatre visits, needle pokes, chemo drugs, travel, time away from her friends and school... just all of it.
We continue to feel your support through all of this and thank you for keeping updated on our updates. As well as contributing to our page. Thank you, from all of Team Kerr.
Just shed some tears of joy over here in Oregon for that sweet little girl doing so well today, and for all she’s had to endure, and her family as well. Sending big love and hugs.
- Mel
Thank you Mel. x
Ramona-Jane is at the beginning of 8 weeks back and forth week about to Christchurch. Every other week, but we expect delays when she 'doesn't meet counts' meaning, her numbers are too low/ she is too vulnerable and they will delay one or more of the trips by a week ish. When in Christchurch she has 4 different drugs happening in different ways, an oral chemo, IT, 2 bags that drip in, one of those in high dose. Quite full on for her body on these weeks. Today she has spent hours in the wards toy room, setting airports and selling me ice creams and salads.
The month previous, Ramona-Jane had a medicine that was a continuous drip, so we managed a backpack, an IV bag and a machine to control the drip for 29 days/ 24 hours a day, straight!! While this medicine made her feel quite good and her 'numbers' were strong the entire time. The admin of the machine nearly killed me. Lots of little complications, including disconnecting the battery and accidently pulling the needle out of her chest (twice!)... all of which mean trips to hospital... immediately. *But the nurses and doctors assure me that the research behind this medicine is so so so so so good for them. And is the new way forward in oncology, making it very unlikely for leukemia to re-occur later on in life!!*
Ramona-Jane also celebrated her 10th birthday! Double digits. We had a family movie night with lots of chips to eat, and my friend made an amazing cake! (thank you again Maria! yummo)
I read every one of these updates, and have RJ and the whole Kerr whanau in my thoughts often. Sending you heaps of love and strength ❤️🩹❤️🩹❤️🩹
Thank you Natalie! hope your life is full of new adventures. x
We had our first trip back to Christchurch last week. And to put it bluntly, it was extremely hard for both of us! Lots of night time things to do... observations... and even finger pricks to test blood sugars. We started each day sleep deprived, exhausted. Ramona-Jane was sick early in the week, and threw up her feeding tube. This meant for the awful experience of inserting a new one, while she was awake! The immunotherapy medicine has begun, and this has been as expected. So, needless to say, we are both thankful to see the back end of that week. And now, we are only a week away from Ramona-Jane's birthday! She will be 10 on 17 March. She had headed to school today, with her backpack on that holds the bag that drips her blinatumomab medicine into her over the weeks ahead. Thank you for your support, as this long hard journey continues for our family.
This was meant to be our first scheduled week back to CHCH. But her numbers aren't right, and they want to wait them out by a week. It is her nutrophils that are super low (.2) and they need to give them time to pop up before she can travel safely, and handle further treatment safely. This leaves me, Mum, feeling super flat. While I had prepped for this week, now I must do the same amount of admin/ prep/ looking at Robs shifts... for the following week. Ramona-Jane is fine in herself, and we appreciate those that have been checking in on her. She has experienced nausea recently too.
Weds 26 Feb is 100 days that we have been on this journey. Feels longer, or maybe that feels long enough.
When we do get to CHCH, it will be the start of her BLIN. An immunotherapy, where she will wear backpack with the IV bag that drips into her accessed port... continuously... for 5 weeks.
Recently we managed a family zoo day out. Even big sister (aka a teenager) joined us and Ramona-Jane was so happy to have our 6 pack together for the day. Definitely one of her most joyful days she just loved it. We also managed to see the penguins and the tasmanian devil... 2 Wellington Zoo creatures who often hide!!
Mum had an epic day this week... 2 children, 2 hospital visits. As little brother needed dental surgery. Sheesh..go Mum. You got this and you did... You did it!
Lastly, all going well our first week back down to Christchurch is a week away. We don't know until the day if we go or if we delay for a week. So quite hectic to prepare for. We should be there for 1 week. But again... Very unknown just yet. Ramona-Jane will start her blin block during this. Where a continuous medicine starts and she carries a backpack with the IV bag for weeks.
You are a Hero mum! 🤗
So glad you got a fun family day at the zoo and some moments of joy all together! So special ❤️
Sounds like a really intense week for you Elizabeth, so sorry to hear 😩 And not knowing whether you’ll be heading to Christchurch for the week until the day-of must be so unsettling for all of you. Sending you all my aroha and good thoughts! ❤️🩹❤️🩹❤️🩹
Thank you ladies! Still feeling the love. x
We have been home, back in Titahi Bay, for a few weeks now. Mum is still busy sorting through end of school year items, Christmas, as well as, entertaining 4 kids on school holidays in the NZ 'summer' (debatable!). We managed our annual Kaitoke Camping Trip, and while we all attended, Mum and Dad tag teamed being at home so Ramona-Jane could stay home when she needed. We have had 4 weeks of treatment at Wellington hospital. The staff there are very nice and have connected with a few families. School starts on Monday. Our plan is for Ramona-Jane to make a quick appearance to say hi to her classmates, but we have been told school takes a backseat during this chunk of treatment. Mum, Elizabeth, is feeling that 'settling in for the long haul' vibe now. This is our new normal. For the next few years. Thank you for your continued support. It all helps.
❤️🩹❤️❤️🩹❤️ Good to hear you’re back home!
Ramona-Jane has tested with still enough leukemia in her bone marrow that she has been put in the 'risk high' group. She has been quite straight forward so far, things have been relatively simple, and I just assumed she would be in a more straight forward group going forward.
This plan involves more regular trips to Christchurch Hospital and will be about 10 months long. And obviously, with all of the children being treated, these are all estimates, as in any phase of the treatment if they are too weak, certain blood numbers aren't high enough, or they get sick with anything, these plans get delayed. So 10 months at its best. More likely a year.
Ramona-Jane cried when we heard this news. Partially, the first blow is that we have an extra week to spend in Christchurch now. Future dates are very tentative, so Rob getting leave is one issue, the complications for our family. But, just that acceptance of 'expect the unexpected' and that this is not going to be straight forward, and that frankly, this is f£&%ing hard.
So so so f***ing hard. What a crazy tough ride 😢Thinking of you all and sending all my prayers, strength and good thoughts. ❤️🩹❤️🩹❤️🩹
I am sorry to hear this and praying for you all
Tomorrow Ramona-Jane goes into theatre, for bone marrow aspirate, and IT chemo. Next week we will hear the results of this, and what come next, when we move into our Consolidation phase. We currently sit in hospital having a blood transfusion as her hemoglobin is the lowest it has been yet! Tomorrow after theatre they will do another transfusion too, to top her up even further.
Then, Merry Christmas to us. We have all of Team Kerr (and Gramma) here for a few days, and they stay for about a week. We have been Punting on the Avon, rode the Tram and visited the Margaret Mahy playground. In the evenings we played cards, uno and pig- pen, and have written Christmas cards. We made some connections with others in the Ronald house, this added to the excitement last night, when at 430 am, the fire alarm went off and we all had to evacuate! The siblings have made connections too, Elliot has a new friend, a girl of a similar age, receiving treatment and living with her Mum at Ronald. Victor is living his best life, with a built in playground, ride on cars and a trampoline, as well as, endless Nutrigrain and Cocoa Krispies cereal available on tap.
It is pencil'd in that Ramona-Jane and Mum, Elizabeth will be flown home just in time to ring in the New Year back home! Things could change last minute, but for now, Mum is happy to take this news.
I am grateful for everyone's support, and I look forward to feeling that love in real life as we settle back into life at home!
Today RJ went into theatre again for a second 'intrathecal'... chemo med directly into the spinal fluid. They have also decided to put an NG tube in while she is in there. (This is a feeding tube, and much easier and more pleasant to do under sedation.) This can be used to give her a more constant source of nutrition since her eating and appetite comes and goes a bit.
On this note, our weekend was pretty rough! Long, boring, quiet, but Sunday brought a lot of sickness for her. She slept a lot that day. But I did manage to get her out in the afternoon, pushing her for a short walk in a wheelchair.
Today... after theatre... We get to move to the local Ronald McDonald house! Hooray!! It will be great to have a change of scenery, or a more normal home environment after 2 weeks living in hospital. I have made a good friend here, and will miss seeing her regularly, but am still ready for a change. And she may be over there at some point too. And Rob comes to visit for 2 nights! It has been 2 weeks since we last saw him, and the last goodbye was chaotic and rushed. Him and I have not yet sat down to process all this together. I told him, at some point I may stop, and then I may collapse, and that may occur when you are here... get ready.
My heart goes out to RJ for having to go through all of that, and for you Liz for being so strong for her while being there by yourself. I hope you do get to collapse in Rob’s arms when you’re reunited. So glad you get to go to the McDonald house too. Sending love from the US.
RJ is an absolute trooper, as are you and Rob. Sending lots of aroha to you all xx
Wow not sure what to say to that. You guys are an awesome family unit, so hang in there and remember you have lots of friends that are there for you to help wherever possible. You are not alone with this. 🤗
I’m so sorry your whānau is living through this. I’m so glad you have the support of Ronald McDonald house as I can’t imaging how hard it is for the two of you to be so far from Dad/Rob and the other kids when dealing with this. I bet he can’t wait to wrap his arms round you and hold you up. Hoping with all of my being that the treatment starts having a positive impact soon - though my heart goes out to RJ for going through chemo. Sending aroha to you all.
