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Tuesday, November 2, 2010

Clarification

Hello,
I have been having some people question what is going on with all this "testing". Many know that Taylor has a rare for of Brain and Spinal Cancer. What this means is that it does not occur in huge frequency to large numbers of the population. This being said it also means that they don't know all that much about it, other than its "BAD". The life expectancy on this cancer is extremely short and generally speaking 5 years is generous. There is I believe only ONE doctor that "specializes" or knows that much about her form of cancer, Anaplastic Ependymoma. I am not discounting the Doctor's here as they have been fabulous and actively seek as many opinions from as many specialists that have dealt, deal with this cancer.

Taylor was always never thought to make her first year, but she did; however, this is not a perfect ending as the cancer was still there, still growing! The only "real" treatment form for this is surgery to remove tumours and then radiation. It was a miracle it was found when it was as she probably would have been dead within months with the tumour she was BORN with. Nothing Mindy and Landon "did" caused this cancer...it just is one of those weird things in life. Taylor never received radiation her first year as it would have caused irreparable damage due to her age.

So when her first year went past...MRI's every 3 months, we prayed, and hoped it would go away, that all the cancer was cut away in her first surgery at 6 days old, a year of chemotherapy every 2 weeks...these were terrible and beautiful months, but trust me I could tell you all the horrors, stress, fear that we had. Then we got her MRI that is always anniversary to her birth when she was one...tumours were back! Devastation...Mindy and Landon were left with sooo many horrible choices, another surgery, radiation and work. Surgery could always cause damage, they never wanted to give Taylor a life where she was not going to be able to "live" like a child just because of their own wanting of her to live, a horrible choice for a parent. Luckily Dr.Pugh is an AMAZING and HOT surgeon who did such an amazing job, he even used plastic surgeon stitches that nurses commented on as they are extremely uncommon, especially the intricate way he insured that it would be a "beautiful" scar (yes I say beautiful). Next was Radiation, what would happen, would it cause severe retardation, what? Again on a wing a prayer they went with it as they consulted all the AMAZING doctor's who assured that it would not cause "serious" problems for Taylor's quality of life. Now work...well it is really hard to look after a BABY who has such severe needs in care and work, someone needed to stay home. Landon after having to miss most of that first year as he worked out of town and would have to continue to, decided that Taylor might not have a very long life and he wanted to make sure he spent some time with her....This was hard, it is hard to go from a double income to a single income with all the costs associated with a child who has cancer. Yes some money is reimbursed for some medical costs, but a lot is not, especially any incidentals of the parent caring for the child...radiation for 33 days straight...and then recovery time from radiation another month and a half.

So now we are in year two...we had 6 good months, but guess what...the cancer came back. The MRI from the beginning of October showed Tumours...they were shown to Mindy and Landon! The meeting it was decided that Taylor would undergo radiation again for 33 days straight. Within the week as Mindy scrambled around getting all necessary prep for Taylor to undergo radiation, surgery for the PIC line, PIC line infected, I got a text from Mindy at work(to me) and it was "Claire just called...her voice was shaky, said "life's not fair" we need to have a meeting tomorrow, its not good" Mindy was in the Costco parking lot trying to hold it together, not to break down. I told Mindy to wait I would be there! Of all things I was reading fairytales with my Reading 7/8/9 class. My principal, just by the grace of God came by to ask me something. I showed him the text, he kindly told me to go and he would look after my class, to take whatever time I needed. So this was tragic on a whole different level. We already were dealing with the devastation the cancer was back, now it was "worse" how could that possibly be?

The MRI was looked at by 4 different radiologists as Dr.Patel, the amazing radiation oncologist, just was not having the MRI sit right with him. It was so important that they get a good diagnosis. It didn't look good. Mindy and Landon were told, I was there, that they needed to basically decide whether they wanted to bother with any treatment options as Taylor's prognosis was now fatal...they had hoped that the radiation they were planning might give her another year or two, but they now with new analysis felt that just was not going to happen. Radiation would only lessen her quality of life for the short time they predicted she would have. You see, Taylor's cancer grows faster with every recurrence...6 good months the last time, could mean a much shorter time!

Dr.Patel however said he was still going to have one more radiologist look at the MRI. This radiologist said he felt the MRI was "inconclusive" and that another one was needed. So Taylor underwent another MRI on Oct.20th. This MRI had some bizarre results that some are misinterpreting, as Doctor's were baffled as it did not show the same results, so therefore the next move was the Spinal tap or LP to see if there was cancer cells disseminated throughout her spine. We just got those and they showed it clear. So people want to know what that means. But it does not mean that either necessairily, as it is all dependent on a small sample of the spinal fluid which may or may not have captured a representative sample of the fluid. I hope you are seeing how this is the worst nightmare as there are NO answers. We now have to wait the next MRI on Nov.23rd to see if we can see Tumour growth, etc...the cancer may still be there, maybe its not as bad as the death forecast, maybe it is...we don't know, the doctor's don't know. There just are no answers. The doctors have said, time and again, that this cancer just is not one they can predict.

So saying all this I hope you can see that although we celebrate these "good" results as victories, we still have had and will have MRI's every 3 months, that we will be completely distressed, every 3 months. Sometimes we get a 6 month reprieve when they can't see the cancer, but her having all the recurrences that she has had, her long term outlook is bleak in medical terms. Does that mean I don't HOPE for a miracle? NO Cancer does go into remission, but it takes a solid 5 years cancer free to really make any statements on NOT having cancer.

SO if you have ANY questions regarding this DO NOT ASK MINDY OR LANDON! Ask me! I think they have enough stress than to have to field questions about this stuff! I know how amazing the support we have been blessed to receive is, but honestly those questions take away their energy that they need for Taylor. Please understand how horrible this has been and continues to be...the not knowing, the fear, the anguish. I am saying this because as much as people mean well these questions are being asked of them and I think its only fair that they be redirected so that this is not another stress on their lives. I appreciate your consideration. I know what is happening so I can answer any of your questions regarding this or can get you the answer!

Taylor's Auntie Leah

1 comment:

Anonymous said...

Its difficult to read Taylors story as it is so similiar to our son's. He was a bit older when he was diagnosed in May 2008, he was 2.
It is an exhausting, consuming journey. I of course do not know all of her story, but if I have any suggestions it is to get a second opinion. Every time we recieved devistating news we always went to another centre for thier opinion. We just returned on Sunday from a 3 month stay in Toronto (we are from Saskatchewan) where our son recieved another major surgery and a second round of radiation for hid Ependymoma tumour. They deal with many of these types of tumours. When the tumour began to grow again this May we talked with St Judes in the states, our oncologist did as well. Both times they recommended going to Toronto. They work closely with the CERN Foundation (specifically for Ependymoma Tumours) and St Judes. They do extensive research on Ependymoma tumours and have technology and experience like no other. Unfortunately the bottom line is still the same. It is a terrible tumour, with terrible prognosis. But Toronto is having good success and have come a long way over the last 5 years (how long they have been doing a second radiation for this tumour) They have treated very young children with good results. The head oncologist Dr Buffet is amazing. Our son's story is on caringbridge (sterlingbacon)if any of the info helps. I follow your story with hope and optimism. like all ependy parents do. Sending lots of positive thoughts and love your way.
Jade Pikowicz
http://www.caringbridge.org/visit/sterlingbacon