This time last year we were up in Brisbane with Sam undergoing his first chemo treatments for leukaemia. It was such a time of unknown – we didn’t know how long we’d be on this journey, what the outcome would be, or how Sam’s body would react to the chemo. We were immersed into a whole new hospital world with a crash course in medical language and procedures.
Now here we are, one year later. We thought it was appropriate to celebrate, or at least commemorate the occasion. Sam was really excited about the idea of celebrating a year of leukaemia treatment. He thought it would be great to go up to Brisbane and not go to the hospital! We weren’t up for the drive so we had a special meal and family dance party instead. That seemed just as good.
One year later we now speak the language fluently. Words like mercaptopurine, dexamethasone, methotrexate and neutrophils are commonplace in our house. We bring our own swabs to the blood tests and have our own collection of hospital spew bags, gloves and masks at home.
One year later we are still navigating Sam’s wacky tastebuds. I’m still getting used to having a picky eater after having a boy who would eat almost anything with gusto for the first six and a half years of his life.
One year later we are living in the rhythm of treatment: Stop eating at 3pm, take tablets at 5pm, have dinner at 6pm. Chris has set alarms so that we’ll remember to give Sam his Bactrim twice a day on Mon, Tues and Wed and his methotrexate with dinner on Thursday. Every fortnight, on a Wednesday morning, we go for a blood test, sometimes to the local pathology clinic and sometimes to Tweed hospital. Trips to Brisbane are now a rarity at once every three months.
With the rhythm, we can’t forget that Sam is on treatment but sometimes I can forget that his body is being slammed with crazy chemicals. And then something happens to remind me…his energy suddenly plummets or a blood test shows he has low neutrophils and I am reminded once again of the delicate balance we are walking.
And one year later I am thankful, so thankful for Sam’s life. I am thankful for the medical system. I am thankful that we live in a country where his treatment is covered by medicare. I am thankful that we live within driving distance of a major hospital. I am thankful that Sam’s hair has grown back. I am thankful that he is able to run and play without pain. I am thankful that his body is staying healthy. I am thankful for new friends we have met along the way with stories of their own, and old friends who have walked with us through this journey. And I am so thankful for my God who has sustained us and carried us through this past year.
The other day, we came home from the hospital loaded with an assortment of drugs in a big brown paper bag. And the reason for this? We won’t be going back to the hospital in Brisbane for a full three months! That’s right, Sam has now entered the maintenance phase of his chemotherapy treatment, and this follows a standard protocol, so basically, we are actually going to have a set schedule and be able to plan things in advance! So, for the next 2.5 years, this is what Sam’s Chemo will look like:
Every 3 months- I.V. Methotrexate Chemo at Brisbane Hospital
Every 3 months- One week of oral Dexamethesone Steroid
Every 2 weeks-Blood test
Once a week- Methotrexate Chemo Tablets
3 days a week, morning and evening- Bactrim Antibiotics tablets
Daily- Mercaptopurine chemo tablets.
The reason for this long term chemo treatment is that they have found that the leukaemia cells tend to hide out in different places in the body, the testicles and the spinal fluid being two major areas. They have found that this low dosage, long term therapy has been most effective at making sure all the leukaemia cells are wiped out. So Sam’s neutrophil count will be monitored through his blood tests, and that count will be indicative of how the chemo will be affecting any residual cancer cells, and then his dosage will be adjusted to try and get the optimum balance. Apparently they are aiming for a neutrophil count of between 1 and 2. A count of below one is where your body can’t fight infection as well, and above 2, the chemo is probably not affecting the cancer cells like it should.
So, anyways, all that to say that we are stoked that we have made it this far, and that Sam is really healthy for what he has been through. And now back to “real” life. Whatever that is……….
**I wrote this post probably a month ago, and never got around to posting it. so here it is. Better late than never.**
We have made it through the delayed intensification phase of treatment and now are partway through interim maintenance II. In about a month or so, we’ll finally hit the long term treatment schedule…maintenance. For a while now it’s seemed like the holy grail of treatment. Finally we will be on a regular routine that lasts for more than four or six weeks, and hospital chemo will be down to once per month. Hurray! It seems like a dream!
That said, I’ve been talking to some other mums who found maintenance to be a rocky road with many trips to emergency and sickness. I’m aware that we could be in the same boat, but so far I’ve been constantly amazed and thankful at how healthy Sam has been. Even though they are pumping crazy chemo chemicals through his body, he has stayed well, usually goes to school and often has energy. I asked the doctor if it’s normal to be doing so well, and she replied, “We’d like all our kids to be going as well as Sam.”
Thank you God for your grace on us!
The delayed intensification phase was…well… intense. Sam had a lot of chemo, lost his hair, and we made numerous trips to Brisbane. One of the hardest parts was giving him injections at home. The nurses had inserted an access point, called an insuflon, in his thigh where we poked the needle in to inject the chemo. Sam was quite terrified of the whole process. It didn’t hurt for the needle to go in, but it was rather uncomfortable and his thigh sometimes hurt for several minutes after the medicine went in. The scariest part for Sam was the first time we had to remove the insuflon. That was big. It took over 45 minutes of tears, reasoning, prayer, distraction, encouragement, bribery, etc before getting it out. In the end I had to hold on to Sam while Chris just pulled it out. We’ve found Sam’s biggest reactions and fears come from the unknown. Every time something is new, he’s pretty freaked out. However, I’d also say he’s getting braver and quicker to come to terms with scary things when encountered a 2nd or 3rd time.
Now that we’re out of the intense phase, Sam’s hair is growing back and his energy has picked up again. My heart broke for him when he reported the results of his cross country race a few weeks ago. When I asked how it went, he stated, “kinda good and kinda bad.” The good part was that he finished the race. The bad part was that he finished last. Even though he has energy, he just doesn’t have the endurance. Not surprising when his blood cells are constantly being knocked back by the chemo. However, it’s truly amazing that even was able to do the race at all, and for that I am again grateful.
Here are a few photos from a photo shoot Sam and I did a little while ago. He wanted to do a bunch of photos with the theme of “hats”. Once he ran out of hats, out came the sunglasses. It was a fun way to spend the day together when his immunity and energy levels were too low to go to school.
I realise my last post was a bit cryptic:) I wrote it in a hurry just before we left to go on a camp quality camp for the weekend(which by the way was awesome!), and it seems I have confused some people.
It stemmed from the fact that when we finally got home that evening, after a 15 hour day, I felt quite a bit like I do after a long haul flight back to Canada. And the more I thought about it, I realised that a lot of the activities we did were quite similar to what you would do on a flight- mostly sitting, waiting,watching the little tv’s, going to the toilet, and being served by the stewardesses. So, no, we are not in Canada, and, yes the “stewardesses” are actually nurses, the “in flight entertainment system” is our iPad, you can’t actually get a jar to pee in on a normal airplane, instead of falling asleep naturally on the plane, Sam was given general anaesthetic for his lumbar puncture, and instead of a sleeping mask, pen and postcard, we got a canister to put used cytotoxic needles in, some chemotherapy pills, rubber gloves and goggles.
So for anyone who has gone on a long flight, but has not had a child in the oncology day clinic, that’s the best comparison I can come up with to give a bit of an idea of how I feel at the end of one of our days up there…. With a few minor differences.
Yesterday Sam and I flew from Australia to Canada.
Well, I suppose that wouldn’t be quite correct, but there were a lot of similarities.
We started off at 6:15am, we were running a bit late for the flight, but still made it on before it left. First, we had a 2 hr domestic flight to Brisbane, then for the main leg of the journey, we had our own first class berth (we were in quarantine), and many stewardesses coming to check up on us and make sure everything was O.K. It was however disappointing that there was no in flight meal ( Sam had to fast for his upcoming surgery) but we kept ourselves occupied with the in flight entertainment system, reading books and playing many rounds of I spy. At one point Sam even fell asleep (helped by the anaesthetist and his white liquid), at which point I was able to go for a walk up and down the aisle to stretch my legs and get a cup of hot chocolate.
One feature that hasn’t made it on to most commercial flights yet, was the pee jar- especially handy when you are sitting near the window and the 2 people beside you both have their tray tables down and you really have to go because you are hooked up to an I.V., which is pumping you full of fluid. Just politely call a stewardess, get a jar, and hand it in when finished. Too easy.
After Sam’s sleep, the stewardesses gave him some more medicine for the next three hours of the flight, and then we were able to transfer back to domestic, making sure to bring with us the complimentary bag of needles, goggles and gloves, that they provide for your comfort on the flight. The last domestic leg was a bit longer than the first, as we had to refuel halfway, giving Sam and I a chance to grab a pizza. 15 hours after we had left, we both stumbled up the steps (Sam had more reason to, as he had a new insuflon port thingy which had just been inserted in his leg) and we flopped down on our beds exhausted.
AAAHH, Canada at last!
Sam is losing his hair – not all his hair, but a good portion of it, so now he looks somewhat bald. There are so many conflicting thoughts and emotions I have with the hair loss. Sam thinks its hilarious – he laughed as he pulled out his hair in clumps, singing a made up song about his hair falling out. I watched him and laughed too – and felt like crying at the same time. Hair loss is such a visual reminder of cancer. For most of this time, Sam has kept his hair and usually looked like a healthy boy. Now his cancer is so much more obvious. And yet…not completely. He still has his eyebrows, eyelashes and a thin covering of hair.
In a weird way, however, I like it – partly because he now legitimately looks the part, and I somewhat like looking at his bald head. I think it looks cool and interesting. We stayed home from church and school this week because his immunity is quite low, and I was rather disappointed. In a wacky way I wanted to show off my bald-headed boy!
Well, a couple of days ago, Sam’s hair started to fall out again. It happened really suddenly. As in, before dinner Lorinda had given it a bit of a tug to see if any hair was starting to come out and none came out. A couple hours after dinner, it was coming out in clumps. After two nights of sleeping in a pile of hair, Sam decided it was time to buzz it all off.
We all think Sam looks great without much hair, and as Sam and I were home from school on Friday, we took the opportunity to do a little photo shoot to show off the new look, and Sam wanted to learn about photography. He was going to teach me about Lego in the afternoon, however, those plans had to change as we were informed of an unplanned trip to Tweed for a last minute blood test, so I am still waiting for my lego lesson.