Monday, 26 March 2012
Today was the day, the day that we would get the results of Nick's first off treatment scans.
He hasn't been feeling well over the last few weeks and despite being hopeful I strongly suspected that today would not bring good news.
We got into clinic and the nurse asked if Nick had finger poke done, she then said that she would be getting a room ready. Nick questioned why they couldn't just say that things were fine where we were and I could see that he looked a bit on edge.
Once in the private room we waited for the doctor to come in with the paperwork from the CT scan but oddly she came in empty handed.
I could feel my heart beat increase as she slid her chair up close to us instead of the usual relaxed stance that she normally has.
She folded her hands in her lap and asked Nick how he was feeling and if he knew why he was here.
He answered simply that it was because he was sick. She then proceeded to explain that fast growing cancers tend to reappear fast too and that the medications that he took during chemo can cause heart problems and breathing problems.
She asked Nick if he'd made any plans for the future and how his grades were, I shifted in my seat and braced for the news that I was sure was coming. I was quite surprised to hear Your scans all look good so we're suspecting that your diet is having a negative effect given the damage to your stomach and bowels from the radiation.
The blood returned to my face with such force that I felt the momentary heat.
Chemo and radiation can cause lifelong problems and apparently Nick's digestion is going to be one of them. A diet of bland food would be better but that certainly wont put any weight on him. Its apparently a catch 22,
we're going to have to find a happy medium between healthy food that settles easily and the foods that make up the biggest part of a teenagers diet. His diet of beef jerky, pizza, timbits and cappuccino will have to be supplemented with some food items that come from nature.
I'll take that over a relapse any day!
Sunday, 18 March 2012
I've been meaning to blog for a few days now but as per usual life gets in the way and I wanted to be sure that I wanted to share some choices that others may view as controversial.
In the end I decided that over the last year I have expressed my every thought in these posts so why start being discrete now.
Just over a week ago I took Nick back to the oncology clinic and they gave him the once over. His blood tests were similar to when he was receiving treatment but apparently that is "to be expected".
They said that they didn't feel any new enlarged nodes but since Nick has residual lymph nodes it can be hard to tell. Also, many of his nodes were in his organs which can be tricky to feel from the outside.
In the end they suspect that Nick's symptoms are from extreme acid reflux and put him on a strong medication but Nick, myself and our home-care nurse are doubtful that this is the case because during treatment Nick did have bad reflux and heartburn and is not feeling that this is similar.
Last Tuesday Nick had his CT scan, pulmonary function and echo, we will find out the results at the end of the month.
While at oncology I had the chance to talk with the doctor about what would happen if it were to be a relapse or what the treatment would look like if there were to be a relapse in the future.
Nick would need something called "salvage chemo" (much more potent chemotherapy then he received before), this would make him very sick and he would be neutropenic often. Because of this they would need to do a stem cell transfusion. If the cancer isn't in his blood then they would harvest his own bone marrow before treatment and then give it back to him once treatment was completed, if the cancer is in the blood then he would need the stem cells from an outside source.
The most ideal donor would be a full blood sibling but since Nick doesn't have that he would need to find a match elsewhere, but there may be another option.....
In 2007 The Center For International Blood And Marrow Transplant Research compared the use of matched bone marrow (currently considered the gold standard) with matched and mismatched umbilical cord blood.
The study showed that cord blood took longer to rebuild the cells in the patients body but it also provided less graft vs host disease (especially mismatched cord blood).
I have given it a lot of thought and Dom and I came to a decision and yesterday we started a new round of IVF.
I debated while pregnant with Maxwell about banking his cord blood but decided that it was "too much work" and "cost too much money" - I am certainly kicking myself in the ass now.
My fertility specialist is wonderful and has been an important person in my life. During Nick's battle he checked in with me, stopped by the hospital, prayed for us often and guided us with Nick's sperm banking.
He and I had a long talk about ethics and although there is a method to genetically check my embryos and select only the closest match to Nick, I decided against it. Given that this sibling is not full blood related the likelihood of a total match is close to zero and since studies seem to show that mismatched marrow/stem cells are better anyway then it seemed irrelevant.
I know that everyone wont agree with my choices and I have heard many reasons why... my hands are full with the kids that I have, it isn't fair to have a child simply to save another blah blah blah but the fact is that my boys grow and improve in their development everyday and this baby wouldn't be born only to save another, in fact I hope that their cord blood sits in a lab never needing to be touched.
I suppose its true that I am a planner even when I don't really need the plan but this really seems like the best choice for everyone involved..... Nick's physical well being (as well as my other children, God forbid) and also my peace of mind. Choosing to do fertility treatments again was always in the plan at some point but Nick's diagnosis and the new knowledge of (hopefully not needed) relapse treatments has certainly changed my thoughts about the timing and my eggs aren't getting any younger so its now or never.
Thursday, 8 March 2012
It all started with a pack of mini bear claws and a beautiful crazy haired little girl who was kind enough to share some smuggled cookies with Maxwell while on our play date.
Maxwell sure did enjoy the cookie but by bedtime he was as stinky as a warthog. The night was long and familiar with his crying in his sleep and his tossing and turning, at one point I even had to pick him up off the floor and put him back in his bed.
Morning was tear filled and by 8am the fever hit, the stomach pains continued and by lunch his ears were causing him trouble too.
I called the doctor thinking that perhaps it was an ear infection and I was actually surprised to learn that consuming dairy when deficient can cause swelling of the eustachian tubes resulting in a fluid buildup. Once the lactose was out of his system then his ears would be fine.
Sure enough by the following morning Max was back to his regular self. This little girls mom was ready to clobber her and told me that at our next play date I had permission to "pat her down for contraband" but in reality little wee Miss did me a favor. By exposing Max to a minimal amount of powdered forms of dairy I was able to see what his reaction would be after being totally dairy free for quite a while, clearly there is no amount too small to cause a reaction.
In other news tomorrow Nick and I are heading back to Oncology, the last few weeks I have noticed some old symptoms resurfacing that make me nervous.
Stomach and back aches have returned, nausea and vomiting have started again, he is bruising easily and no matter the amount of food that he consumes the weight just isnt staying on.
I emailed his clinic nurse and within five minutes got a response that just said "we need to see him asap"
I am thinking positively and am confident that the symptoms are late term effects of the chemo and radiation but the first year is when its most likely to have a relapse so we need to get him checked out.
March 15th will be one year to the day of his initial diagnosis so the timing is certainly crappy (as if there is ever a good time to learn about cancer).
This year was supposed to be a year full of nothing but good news and I am hopeful that it will continue to be that.
I am bracing for tomorrow and keeping my fingers crossed that its nothing more then a mom and oncology nurse being paranoid.
To be continued......
Thursday, 1 March 2012
Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.
This quote is so simple and so true, it should be common sense and yet quite often its not.
I practice something called random acts of kindness or what some call paying it forward and this is something that I try to teach my children as well.
Whether its paying for the coffee of the person behind me in the drive thru, letting a mom in the restaurant know how well behaved her children are, telling the older woman in the elevator how nice her perfume smells or asking the recent widow next door if she needs anything at the grocery store, these are all things that have the power to make someones day a tiny bit better.
Random acts of kindness were something that were a huge part of our hospital stays, quilts were made to combat the bone chills that chemo brings and there was always treats in the Ronald McDonald room made from people who know what its like to be hungry but not willing to venture all the way to the cafeteria when your child is so sick.
Even something as simple as sharing the top secret hospital wifi code was much appreciated, the concept is amazing to me.... how could providing a 6 digit code create an instant connection with someone that only seconds before didnt know that another existed.
For years now I have been a part of a forum called Wondermoms. Just a group of moms who chat on line about issues both big and small, its like a virtual coffee date with women who were once strangers.
Many on line forums have issues like jealously, negativity and cliquish behavior but ours seems to be the exception.
We all come from different places both geographically and with our lifestyles, some have many children while others have one, some are married, divorced or single... employed, self employed or staying home to care for their families. No matter our differences we were bonded because of this group. This became clear to me when a fellow wondermom surprised me at the hospital with an ipad and itunes cards right after Nicks diagnosis which many of them had pooled together to purchase.
Although I had only met her once or twice before it didnt stop me from bursting into tears and hugging her as if she was my lifeboat and it didnt stop her from hugging me back.
The material items gave Nick something to do but the gesture gave me something positive to cling to - good things were still happening in the world no matter the gray cloud above us.
From now on take the time to think about how something as simple as holding the door open or saying a kind and genuine word can make someones day a bit better.
There is always the very good chance that YOU could be someones lifeboat when their waters are a bit rough.