Photo cred: Amy Green, Photography to Remember

Our life recently has been like a rollercoaster ride, with ups and downs and round and round, twists and turns that make your stomach turn, it makes one nauseous and sometimes even sick enough to hurl!

But when we come off a rollercoaster ride we feel so exhilarated and realize what a thrill it is and don’t regret even the nauseating upside down twist when you thought you might just die. Like modern rollercoasters while more thrilling than the golden oldies we also feel more secure in the five-point harness seats that lock into place and keep you safe through the upside-down twists, head spinning turns and thrilling speed.

God is our safe rollercoaster seat. He is there to hold us tight when we’re thrown through the air with speed, get turned upside down in a spiralling twist and through to the exhilarating end. It’s Him who takes us through it all and at the end gives us the rush when we look back and see what He has done.

Romans 8:28 “And we know that in all things God works for the good of those who love him, who have been called according to his purpose”.

PART 2…

The call from Oncology came while I was driving the kids home from school one afternoon, because I have my phone permanently connected to my car’s Bluetooth system I don’t think twice to answer while driving, after that call though I wished I had asked them to call back even just twenty minutes later…

It had been about a week after being home that the call came, meant just to confirm the appointment so that we could discuss the tumor’s histology results, the nurse confirmed our appointment for the next day, she then let slip that Craig’s treatment would most likely start in about two days’ time… when she asked if it was a good time to talk I said yes since all she was meant to do was confirm an appointment time. I don’t think she meant to, but she had indirectly confirmed that it was cancer… I felt like my world had just fallen out from under me!

I started to shake and battled to hold back the tears, I wanted to pull over, cry and call Jonathan right away to tell him, I was losing control but I couldn’t, I had to hold it together because it would scare the kids – and with the Bluetooth connected they’d hear everything so there was no way I could call him, I couldn’t think about myself, I had to put them first. Thankfully we were at a red light and stuck in a bit of after school traffic. In a second I snapped back to reality, forcing myself to breathe and regain control. Tears quietly ran down my cheeks but I stayed quiet and as calm as I could, while driving them safely home.

The next day as planned, we met with the doctor who explained to us that they discovered from the pathology results that Craig actually didn’t have a Wilms Tumor, although similar but extremely rare, it was in fact a Clear Cell Sarcoma of the Kidney (CCSK). During the surgery, they removed the raptured mass, the kidney and the adrenal gland, but since it had ruptured prior to the procedure and had been spilling into his abdomen, it immediately escalated the cancer to stage three and he would need to have an aggressive form of Chemotherapy and Radiation Therapy for the next six months. It was a lot to take in, we felt completely overwhelmed as he continued speaking, although we were aware that chemotherapy may be required, we had no idea how intense it would be. The doctor went on to explain that their team planned out a 24-week chemotherapy treatment plan and 3-week radiation therapy plan too. A total treatment plan of 27 weeks (about 6 months). The course includes a three to five-day intense chemo dose which requires admittance to hospital, which will happen every third week, provided his blood count is high enough, if it’s too low it will be postponed for a week to give his body a chance to get the count back up. This obviously extends the overall length of his treatment.

The doctors also warned that in the first 7-10 days after intense treatments his count will drop and he cannot be in or around high-risk environments, for example, shopping malls, indoor play areas, lots of children or big crowds of people – especially lots of children, since he’s more prone to infection.

Since we were already there for our consultation, the doctor asked if we were up to starting his first course of chemo immediately, instead of coming in the following day again, they could instead have him admitted and get him settled then and there. We agreed, and so Craig’s chemotherapy started with a bang!

Chemo infusion started (he got three different chemo drugs each day)

Chemo on the go and this guy is all smiles showing off his super scar after the steri-strips were taken off

Bone scan being done, to do this they inject him with radioactive dye

– preggie mommy had to keep her distance till it wore off 24 hours later

A few days in and diligently keeping everyone updated, on social media and WhatsApp, it was information overload time answering everyone’s questions and copying and pasting all the details over and over again.   I had been chatting to Arlene about it all, at first, I said I was okay and that all of us are okay, that Craig was handling the medication well and that they give him anti-nausea meds before chemo starts for the day, for example. The same answers that I had given everyone… While talking to her it had suddenly started dawning on me, I had been reassuring everyone who asked, just going through the motions and regurgitating all the information over and over and over again, but I hadn’t really processed any of it myself. I didn’t really allow myself any time to think or to let it all to sink in, my phone fell out of my hand as I sat in a corner on the floor of our room crying. Everything just beginning to register, all that had happened, the diagnosis and the chemo and bone scans and CT scans etc., etc., etc. But in that moment, I for the first time said it out loud, that my son has cancer. Joel came into the room then, and at two years old he doesn’t understand any of what is happening, when I’m at the hospital during the day he thinks I’m at work as usual, when Jonathan is away at night he just thinks that Daddy is working late and doesn’t even realise he hasn’t been home all night since his main need is me and the comfort that breastfeeding brings to him through the night. He saw me crying went quiet for a moment instinctively knowing that mommy was sad, just lay his hand on my shoulder and looked at me with his head tilted asking softly “mama?” he simply melted my heart in that moment.

Craig started getting annoyed with having to stay in hospital but other than that he was doing well, and handling the medication well too. Soon we were ready to go home and Craig was as happy as could be! He had to leave the drip line in for sedation medication to be administered at Grooteschuur the next day for his radiation mark-up scan session but other than that he was good to go.

Home and loving it!

We were warned that Craig’s hair may start falling out in the coming weeks and we had already noticed little bits falling out by the time he was discharged but nothing noticeable. We arranged for him to have his hair cut in stages to make it easier for him to handle especially since he had such long and thick hair. I contacted our photographer Amy Green from “Photography To Remember” and asked her if she would photograph his journey starting with the 1st haircut, she happily agreed!

Photo cred: Amy Green, Photography to Remember

That night though, only five days since he got home from his first round of intense chemotherapy, his temperature spiked, we immediately took him in to hospital and they admitted him for neutropenic fever. He was put on a course of antibiotics and monitored closely for the next few days. By day three he was given the all clear and allowed to go home.

Neutropenic Fever and admitted to hospital still can’t get this boy down!

His hair had started to fall out more and we constantly needed to shake out his sheets and pillow case but with all his hair still even after the cut, it wasn’t noticeable just yet. Although, just a few days later and only a mere two weeks after his first intense chemotherapy course, Craig’s hair started to fall out rapidly, it was actually quite shocking! In just four days he has lost almost all of his hair, that he looked like a little old man. So we decide to shave it all off, this time a close friend of the family and photographer, Nicki Johannisen captures it on camera for us at home.

Brave Daddy decided to help Craig’s anxiety a bit by offering to let Caleb shave his hair first, they were so stocked to be able to do it! When it came time for Craig though we still had quite a few tears, it was heart breaking seeing him so sad that his hair was being cut all off. But once it was all done and a bath later, Craig was back to his smilie self for some pictures outside.

Day 1

Day 2

Day 3

Day 4

Photo cred: Nicki Johannisen, Nicki Joh Photography

That very Sunday evening (head just shaved) as scheduled, Craig was admitted into hospital ahead of his surgery to have his port inserted the following morning. The surgery was done early that morning and went well, he was discharged that evening and due to begin radiation the following day.

The radiation course would be fourteen days on week days only, over three weeks – beginning on a Tuesday till Friday for week one, and Monday to Friday for the following two weeks. He had to be “nil per mouth” from 7am and we’d go in around 1pm, he then gets sedated and the treatment gets done, on it’s own, the actual radiation only takes a few minutes, afterward they monitor his stats and check that he at least responsive even if he doesn’t wake fully and we go home by about 2pm and return the next day and do it all over again.

He seemed to take the radiation therapy a bit harder than the chemo, especially the first week and a half in. Mostly due to not being allowed to eat for half the day and the sedation medication made him rather nauseous. To such an extent that he wouldn’t eat at all before the treatment, which was around midday to early afternoon, because he didn’t want to eat at 6am in the morning, then by the time he woke up properly from the sedation he was so past the point of hunger and just didn’t have an appetite anyway. And the next day the cycle would begin again. We really struggled to get to him to eat much and we offered him anything even if it meant sweet treats and luxuries but even then he just wouldn’t budge. Thankfully though from the second week in he handled it a bit better and would pick at little bits of food, while weekends his appetite returned and he at just about everything.

Talk about lows and highs, even with everything that was going, remember we still had some good news to share and so on 11 November we announced to everyone on social media and those who didn’t already know that we are expecting a baby, and a few days later on 16 November I also celebrated my 31st birthday!

We absolutely loved the response and congratulatory messages for our pregnancy announcement, and so blessed with all the calls, messages and facebook comments on my birthday! We’re also looking forward to Jonathan’s birthday this month, and obviously Christmas and just spending precious time with our family and loved ones.

On Friday the 24th of November, he has his last radiation session, my mother in law (Granny Sabrina) accompanied us on a few of the radiation sessions including the last one, and Amy is back to capture this momentous occasion and milestone in Craig’s cancer journey.

Photo cred: Amy Green, Photography to Remember

From the two parts of “Our Rollercoaster Ride” you’ve come to know a little more about our family and Craig’s journey with Clear Cell Sarcoma of the Kidney. What I haven’t spoken about yet is our amazing support system! While all this is going on and we’re in and out of hospital, it’s not just Jonathan and Me holding our family together. I’ve had so many people tell me that we’re strong, we’re brave, that they admire us, and we do appreciate all the kind words, really we do, but it’s not just us. Firstly it’s a complete and utter reliance on our heavenly Father, without relying on God for strength and guidance and just trusting Him with all our heart, we’d have lost it a long time ago. Then there’s our amazing family supporting us.

My mom, Pamela is simply incredible, she lives with us and not only cares for Joel on a daily basis when we’re at work but also cares for all of us at home, she’s done and continues to do so so much for us, from cooking, to cleaning to running our home and caring for Joel and Caleb when we can’t be home because we’re at the hospital. And she is also a nanny to two other kids daily, looking after the three kids is her work, and yet she still added so much more to her plate since Craig’s whole ordeal. We really appreciate her and all she does so much!

Then there’s my in-laws, all three of them – My mother-in-law Sabrina, father-in-law Randy and my sister-in-law Renèe too. They have been so amazing, on Sunday evenings and even a few extra nights in the week at times, when Craig is in hospital, Caleb stays over at their place, they see to him in the morning for school, Rènee drops him off at school, my mom-in-law fetches him most days and Jonathan and I do so on the odd day. They do homework with him and give the quality time and a little special pampering he needs so he knows he is not being forgotten about in the chaos, even though Craig needs us a little more at those times. Caleb obviously loves it, because he loves being with his grandparents and his aunt and is absolutely besotted with his Granny Sabrina especially.

Then, my dad, Colin and step-mom Colleen, something you have to know is that Craig is totally obsessed with two people in this whole world, his dad, and his grandpa Colin. Our kids are so blessed to have so many grandparents, great-grandparents and even a great-great-grandma, they all love spending time with all of them. Family is very important to us so we make an effort to visit and spend time with all of them, thankfully we all live nearby to one another and some of them even live together on the same property, so it’s not that difficult. Craig however simply idolises my dad, his “Pa Colin”. I mentioned previously that Craig is very close to his daddy, more so than with me, so when he stays over in hospital, he tells me that I am not allowed to sleep over and only daddy may do so – which works out well because he is happy and Joel is very close to me rather than his dad, and is still breastfed at night so it works for us all. Well, the only other person that is allowed and even requested to stay overnight at the hospital with Craig is none other than “Pa Colin”. We owe a huge thanks to all of their grandparents (all three generations up) and especially to my dad for staying with him sometimes so Jonathan could get some sleep in a bed for even one night here and there during Craig’s hospital stays, and also funnily enough, for the already arranged overnight stays that Craig himself has already arranged with his grandpa.

A special massive THANK YOU to our photographers, Amy Green and Nicki Johannisen for our beautiful pictures and for helping us capture it all, we just know that Craig will be so grateful that he has these for what we believe will be an awesome testimony one day.

I could go on and on about all the people, family and friends, and friends who are like family, and even friends who I have never met in person but have grown to love from a distance, everyone who have supported us in so many ways over the past couple months. I cannot mention everybody by name, but Jonathan, the kids and I would like to thank you all for absolutely everything you’ve done for us. From visiting at the hospital, to bringing hospital snacks, cooked food and baked goods, a phone call when we needed it, all the messages of support and concern, all the prayers and well wishes, absolutely everything, THANK YOU!

Especially to our family mentioned above, you all deserve HUGE medals and we wish we could somehow repay you one day but I don’t think we ever will be able to, we so eternally grateful for you all, we love you!

For now we have a little break, Craig will be admitted for a 3 night stay for his next intense chemo dose before Christmas and then again for a 5 night stay in the first week of the New Year.

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