Raina was in the hospital this morning to have a central venous catheter put in. This will make administering her chemotherapy easier, and will hopefully enable us to dodge any (many?) future IVs, which Raina hates with the intensity of a hundred burning suns. Everything appears to have gone according to plan. She is comfortable, though a bit groggy. We are planning a wagon ride and a long nap for this afternoon. I promised her when she got out of surgery that I would make her great grandma's apple pie.
The oncology team also did a spinal tap to test for any tumor cells that have migrated into the cerebrospinal fluid. We are banking on them not finding any, but it does not appear it will change the course of treatment in any event.
We reviewed the chemical cocktail this morning that Raina will be subject to next week. Lots of stuff. Lots of side-effects. Fortunately many of them pale in comparison to the side effects of unchecked tumor growth.
Friday, February 18, 2011
Wednesday, February 16, 2011
Treatment
Courtney and I spoke with the oncology team yesterday. We are expecting chemotherapy to start on Monday following a minor surgical procedure this Friday.
Our day to day existence has been much easier since we left the hospital two weeks ago, as Raina has been essentially symptom free. A happy baby makes for happy parents. Her big smiles and infectious laughter make it possible to temporarily forget the reality. However we're more than a little worried that the chemo will be hard on her. If so I anticipate it will make everything else harder to slog through. I suppose in the back of our minds is also the fear that she may never return to the bubbly baby we know. Successful treatment at this stage will only bring more treatment, whether it's radiation, surgery or more chemotherapy... All have their own side effects and potential complications.
The oncology team will assess the progress against the tumor after this first round of chemo. If we do not see much response (shrinkage) then it appears the recommendation will be to switch to palliative care. As such, the next three weeks will be a pivotal time. If you have favors to call in with whoever runs this crazy show, by all means.
Our day to day existence has been much easier since we left the hospital two weeks ago, as Raina has been essentially symptom free. A happy baby makes for happy parents. Her big smiles and infectious laughter make it possible to temporarily forget the reality. However we're more than a little worried that the chemo will be hard on her. If so I anticipate it will make everything else harder to slog through. I suppose in the back of our minds is also the fear that she may never return to the bubbly baby we know. Successful treatment at this stage will only bring more treatment, whether it's radiation, surgery or more chemotherapy... All have their own side effects and potential complications.
The oncology team will assess the progress against the tumor after this first round of chemo. If we do not see much response (shrinkage) then it appears the recommendation will be to switch to palliative care. As such, the next three weeks will be a pivotal time. If you have favors to call in with whoever runs this crazy show, by all means.
Saturday, February 12, 2011
Making Lemonade
"When life hands you lemons, make lemonade."
... I was driving home from the hospital last week when this saying popped into my head. I thought it would be nice to meet the person that first uttered it so I could punch them in the face. What a trite and naive observation. If only it were that easy.
Coming back to that train of thought, now with emotion removed from the equation, I wonder if there isn't something to learn from that phrase. What if we were to speak with or write to other families who are confronted with similar diagnoses? What if we were to soften up and become more compassionate people? What if this experience reminded us how miraculous it is that we live and breathe ... and made us take the time to revel in it? It does not seem possible that we will be able to channel the bitterness, anger and fear into something positive enough to balance the tragedy of Raina's illness. However it does seem possible and maybe even likely that Courtney and I will learn a better way to live. Regardless of the shape it might take I am inspired by the potential.
... I was driving home from the hospital last week when this saying popped into my head. I thought it would be nice to meet the person that first uttered it so I could punch them in the face. What a trite and naive observation. If only it were that easy.
Coming back to that train of thought, now with emotion removed from the equation, I wonder if there isn't something to learn from that phrase. What if we were to speak with or write to other families who are confronted with similar diagnoses? What if we were to soften up and become more compassionate people? What if this experience reminded us how miraculous it is that we live and breathe ... and made us take the time to revel in it? It does not seem possible that we will be able to channel the bitterness, anger and fear into something positive enough to balance the tragedy of Raina's illness. However it does seem possible and maybe even likely that Courtney and I will learn a better way to live. Regardless of the shape it might take I am inspired by the potential.
Friday, February 11, 2011
Grace
Courtney and I have been introduced to a new word. That word is palliate. It is a verb that means to relieve without curing. The phrase "palliative care" comes up often. This type of care forgoes attempts at curing a condition in an effort to maximize the quality of life. What an awful proposition this is. I hated this phrase and the awful implications the minute I ran across it.
When Raina was diagnosed, we experienced about 48 hours of despair and a vague but huge sense of loss. After this initial period something changed... It happened in Courtney first. The sorrow and fear transformed in part to a need to take action. It manifested as intense research, questioning and documenting. Seeing her galvanize amidst the chaos in the hospital gave me strength. Like an invisible referee had brought us into the ring with Raina's tumor, made us shake hands and yelled 'fight!'. Since that moment I really have viewed this as a fight. I think that's a common reaction when an illness is diagnosed.
It appears highly likely that we can achieve some small victories against Raina's tumor. It is also likely that we will destroy the person that we love in the process. The stakes in this game are bewildering.
As I reflect and ponder the potential outcomes, I have gained a respect for the notion of palliative care. I hate the phrase as much as I did two weeks ago. But I am learning that there is something to be said for dying with dignity and grace. So often we are not afforded the choice.
When Raina was diagnosed, we experienced about 48 hours of despair and a vague but huge sense of loss. After this initial period something changed... It happened in Courtney first. The sorrow and fear transformed in part to a need to take action. It manifested as intense research, questioning and documenting. Seeing her galvanize amidst the chaos in the hospital gave me strength. Like an invisible referee had brought us into the ring with Raina's tumor, made us shake hands and yelled 'fight!'. Since that moment I really have viewed this as a fight. I think that's a common reaction when an illness is diagnosed.
It appears highly likely that we can achieve some small victories against Raina's tumor. It is also likely that we will destroy the person that we love in the process. The stakes in this game are bewildering.
As I reflect and ponder the potential outcomes, I have gained a respect for the notion of palliative care. I hate the phrase as much as I did two weeks ago. But I am learning that there is something to be said for dying with dignity and grace. So often we are not afforded the choice.
Wednesday, February 9, 2011
Pathology
Courtney and I visited the hospital today to meet with the oncology team. They relayed that Raina has an atypical teratoid/rhabdoid tumor (ATRT). This is probably the worst news we could have received... ATRTs are highly aggressive and prone to metastasis. They appear to be at the extreme end of the malignant tumor spectrum. Long term survival does not seem likely. A second and possibly third opinion will be solicited, however we do not expect that the diagnosis will vary significantly.
The shreds of hope we had been clinging too are all but gone. The grim reality is starting to settle in and it is carving out a void that I suspect will never be filled. I do not know how parents cope with the loss of a child. It seems impossible to me.
Courtney and I have resolved again to enjoy all of the time we have with Raina. To really succeed at this it seems likely that we must postpone much of our grieving... Grieving for the life we had planned, for the reality we knew just two weeks ago and for the daughter that may not have the chance to grow up. I think otherwise we will be unable to enjoy the time we spend with her. Hopefully this is not too ambitious a goal.
The shreds of hope we had been clinging too are all but gone. The grim reality is starting to settle in and it is carving out a void that I suspect will never be filled. I do not know how parents cope with the loss of a child. It seems impossible to me.
Courtney and I have resolved again to enjoy all of the time we have with Raina. To really succeed at this it seems likely that we must postpone much of our grieving... Grieving for the life we had planned, for the reality we knew just two weeks ago and for the daughter that may not have the chance to grow up. I think otherwise we will be unable to enjoy the time we spend with her. Hopefully this is not too ambitious a goal.
Coping
The meeting today with Raina's oncologists was postponed a day due to some inconsistent results from one of the labs analyzing the biopsied tumor cells. Another day of waiting before we get the pathology.
The progression from initial diagnosis to surgery to discussion about the nature of treatment has been hard. So far the most effective strategy has been to focus on the very short term. The next appointment, the next day, the next phone call. I think human nature though is to speculate and project and plan for what's next, and so there are stretches where we get wrapped up in the myriad tragic scenarios that may be waiting on the other side of tomorrow. None of this type of thinking has been very productive and it's almost always accompanied by intense sadness. Visiting family and friends have helped reel us back in from these dark places regularly. It is said that no man is an island, and I cannot agree more after having lived through the last two weeks. We are fortunate to have so many people here to help us through. Thank you.
Tuesday, February 8, 2011
Infit
I really like Latin. The language I mean. Its age and relative obscurity to modern folk grant it a healthy respect I think. There is an elegance to it too that I am not educated enough to properly describe.
I understand "ex dolor" to translate as "from pain", which appropriately describes my motivation in writing here. Per above this is maybe a more respectable and elegant title than the English alternative.
My daughter Raina was diagnosed with a brain tumor the day after her first birthday. She spent the next eight days in the hospital being poked, prodded, irradiated, sedated, cut open and ultimately stitched back up only for us to learn that the tumor was malignant, aggressive and pushing up against her brain stem.
The devastation that this diagnosis has wrought on our little family unit is hard to describe. I sit here, despairing, on the eve of a meeting where the final pathology report will be presented to us... fearful of any and all eventualities that may unfold.
I have hope that this blog can serve as a kind of therapy for my wife and I during these uncertain times... And maybe even as a means of communicating with family and friends when we find it hard to speak the words.
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