Hello again,
Sadly I am sending out this update with a bit of bad news. I know that many of you are aware of the whirlwind that has been the past 5 days, but I felt like it was important to follow up, and give everyone a bit of an update….and to be honest, it will help us remember what we’ve told who. So, best to start at the beginning…
*In Update #9 we pointed out that Evie's tumour had grown, and she was being given a 12 week rest period from chemo to give her body a break. She would have routine check ups and then would be given her next MRI at the end of the 12 weeks - October 21.*
As of October 4thEvie has been feeling a little off. We noticed that with each day that passed, she was a bit more tired. As the days went on, we watched as she began to sleep more and more, her naps became longer and her bedtime earlier. When she was awake, she was happy for the most part, but fairly quiet. After a week of sleepiness, I decided that I was uncomfortable, nothing was overly bad, but something wasnt right. I made an appointment to bring Evelyn in to see her Neuro-Onc team at SickKids. That Friday (October 14th) she was assessed, but with no other symptoms, it was assumed that she likely had something viral that she was fighting off. I left feeling ok, and figured she would be getting better over the weekend. That however wasn’t the case. Paul and I watched Evie sleep most of the weekend away. By Monday morning I had decided that SickKids had only really ruled out her tumour as a problem, but not diagnosed anything (which isn’t really their job anyway). I took her to the walk in clinic as I was unable to secure an appointment with her family doctor. There she was checked out, and found to have what appeared to be an ear infection. By Wednesday we had seen no change in Evelyn. In fact, she appeared to be sleeping more. I called SickKids, and they suggested we follow up with the Family doctor, which we did on Thursday. Our Family doctor ordered blood work, but once again, with Evie showing no other symptoms, and any sign of infection had ceased due to the antibiotics she had been given, it was difficult to assess. By evening Paul and I were getting a bit anxious. Something just wasn’t right and we didn’t know what to do. Evie went to bed at 6:30pm that night, and when I left for work at 8:30am she hardly stirred. I called Paul from work and told him I wanted her to go to the ER at SickKids. Evie was still asleep, and we were both frustrated and scared. I called her Contact Nurse at SickKids and simply informed her that we intended to bring her to ER.
We arrived at the ER by 1pm, and at 5pm on Friday we were told that Evie was going to get a CT scan. Her routine MRI was already scheduled for Sunday. We took Evie to her CT –which she did without sedation….because she’s so awesome….and then headed to our room, as we were to be admitted. Within 30 minutes we were being talked to by a NeuroSurgery Resident. She explained that Evie’s CT showed excess spinal fluid built up in her brain, Hydrocephalus. The only way to relieve the pressure was to operate and insert a shunt. This procedure was done immediately, and by 9:30pm we were meeting Evie in the Recovery Room. We were told that the shunt would give the fluid a passageway to drain, relieving pressure, which would basically put an end to the constant sleeping.
Saturday and Sunday however showed little change. Evie had an Xray (to confirm the shunt was properly placed – which it was), and her MRI (to check status of tumour, but would also display if shunt was draining fluid properly – unfortunately her tumour had grown again, fluid was still draining). Aside from that, her weekend was very quiet, she slept a lot, ate and drink very little. Her awake periods were not much better than before her surgery. On Monday a second CT was done to see if perhaps the shunt had stopped working again– they expected Evie to be recovering better by now. Once again, we got results quickly, but they were not good. The shunt was working fine, so it could no longer be blamed for the sleeping (but was still 100% necessary to relieve the Hydrocephalus). Her sleeping was now believed to be a result of her tumour growing again. It looks like the tumour grew, and blocked the passage for the spinal fluid (causing Hydrocephalus). The MRI had shown growth, but also looked like the cells inside the tumour, at the centre had died off. This may mean that Chemotherapy was more successful than originally thought….her tumour grew, but something was killing those cells as well.
It was decided this morning that even though chemo had likely killed something, nobody wanted to wait to see if a new protocol would continue that process. Evie is scheduled to have surgery tomorrow morning, and the plan is that the “dead” parts of her tumour will be removed. As many of you will remember, from the day we were diagnosed, surgery was not supposed to be an option for Evie’s tumour. It was always said, it would be the step taken only if it became necessary, a “lesser of two evils”. This is where we are. Evie cannot simply sleep her days away while a tumour may/may not continue to grow, while more chemotherapy may/may not work. Surgery is risky and it is scary, but right now, it is the best way to relieve the pressure and help her. This is what Evelyn needs.
Today we met with her surgical team. They have an impressive set of credentials, and we trust them. We believe that we are in the best place we can be, and that we are getting the care Evie needs. We felt like it was important to get this information out to everyone tonight, on the eve of this very big, very important surgery, because we need you. There is much to be said about the power of love, of positivity, and of healing energy. Tomorrow morning, at 8am Evie will go into surgery. She will spend much of her day there. We are asking for your support, for your thoughts and for your prayers.
We will do our best to send out a brief update about her surgery and her progress in the coming days.
xoxo
Paul & Kristine
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