The universe has a wicked sense of humour, don't you think?
This morning I woke up and found myself worrying about Oscar again so I thought I would distract myself by reading a parenting magazine I subscribe to on my ipad. It's good for recipe ideas for trying to get Oscar to eat something other than bacon, or salt or milk. Anyhow, I had given myself a good talking to and told myself to do something positive. Find a new recipe to cook for tonight or distract myself by reading a few articles.
I flip a screen up at random and the title is, 'Building Hope'. Sounds like a nice positive story to distract me with. It turns out to be a story of a little girl who has ALL (the same leukemia as Oscar) and has relapsed twice. Yep, like I said the universe has a wicked sense of humour sometimes.
The reason I am sharing this with you though is to let any other families with kids with cancer know that there are some great improvements in treatment being researched and trialed all the time. This particular little girl was told to go home and arrange hospice care but her parents did some research and flew her directly to The Children's Hospital of Philadelphia where an oncologist had pioneered a new leukemia treatment which involves removing T cells from the patients body and then programming them in the lab to attack her leukemia cells and returning them to her body six weeks later. Three weeks later tests showed there wasn't a single cancer cell in her bone marrow and seven months later there are still no signs of the cancer returning.
It is my deep desire that no one reading this ever needs this information but, just in case you might, I wanted to share it with you. Imagine if this became the future for cancer treatment and perhaps even replaced the need for all that horrendous chemotherapy. Imagine if it cured all those patients who relapsed. Imagine if it can be used in other cancers and in adults too. Imagine....keep researching....keep up hope and stay positive as much as you can (and be kind to yourself when you can't).
I send this information out into the ether and I hope it reaches the right people at the right time and that the universes sense of humour has a miraculous silver lining for any families suffering at this time.
Take care beautiful people. x
Wednesday, February 27, 2013
Sunday, February 24, 2013
I have been waiting to be in the right frame of mind to write an update but have had trouble finding that 'right' space in me head.
Oscar had his check up last Wednesday and all is well I think but it was a bit of a different experience. His white blood cells were the highest they have been since he was first diagnosed (when they were extremely high). The Dr checked out all his bruises and his testicles and, well, all of him. This is not the way it usually is but they played it very cool so as not to alarm me. The thing is though you can pick up that energy in the room. After being asked if he has been unwell I explained he had a head cold so we think that may be the cause of the high cell count. I think they were worried.
The next day we went to the urologist and got the results from Oscar's kidney tests. Basically, one of his kidneys is doing all the work, probably because his reflux on the other side prevents the other kidney from doing anything. We aren't going to do the test to confirm the reflux because it is a pretty awful test and whatever the outcome won't change what we are currently doing. This is all ok, you can live with just one kidney (although it freaks me out that only one kidney had to do all the work of coping with the huge amounts of chemotherapy that Oscar has been through). There is nothing we need to do other than ensure he goes to the toilet regularly and have his kidneys checked every 12 months to make sure surgery is not required.
Overall, I am not fully capable at this time of functioning well let alone articulating myself here. Wednesday freaked me out and I finally succumbed to the temptation of researching 'relapse' on the Internet. I promised myself I wouldn't and have not done so in the last eight months since he finished treatment. But this week scared me and then this time feels a bit crucial because the chemo will have finally left his system. Now we get to see how he goes without it. I didn't sleep much after this and I am not proud of the fact that I can't be more positive, less fearful.....especially when I recently ran into another child who went through treatment about a month ahead of Oscar who has relapsed. How can I not possibly be more ecstatic and full of enthusiasm for enjoying every moment that we are so lucky to be having with Oscar?
When we visit hospital there are layers of emotions. Nothing is simple. We get the joy of seeing the staff who have in many ways become a part of our extended family. We get the gut wrenching devastation of witnessing other children's journeys at various stages along the way. We get the magical rush of pure surprise and delight at seeing a child with hair and health for the first time (for we have only previously known them during very real sickness). We feel survivors guilt when our child is doing well but another child we know and care about is suffering, relapsing or worse. We feel the shame of not having the courage to always live with the gratitude and joy that good health should result in. We feel powerless about the circumstances we and our fellow journeyers are experiencing and there is the fear/concern/worry that sometimes creeps back in despite the fact that we know they are not useful emotions.
They say we create our own reality with our thoughts and even though we can't control the circumstances of our life we can control how we think about it. This is true. This is what gets you through. At the other end though there are just too many thoughts sometimes. Too many layers. Making the right choice of thought is something we have to have the self control to manage. No one else can do it for us. We also have to model it to our kids who aren't always doing so well with the many, many things that they have been bombarded with along the road to good health.
Sometimes though, there are too many thoughts. Too many layers.
For me, at this time, I must retreat. Don't get me wrong. I know I'm extremely lucky at this moment in time. I know that every day is precious. I know that I can make better choices but sometimes we all need to take a break from making any choice at all.
So, I am going to just 'be'. Whatever layers surround me I am going to breathe in and out, do yoga, meditate, try to get some good nutrition into Oscar (which feels especially pressured given that it is crucial to good cell health and prevention of relapse), help Auden adjust to school life and cry when I need to. Laugh when I can.
Take care beautiful people and thanks for checking in on us. I know all is well somewhere outside the layers that are fogging my brain and that the fog will clear. May you and your families find yourselves in the light. x
Posted by Cindy at 7:28 PM