Next Round of Chemo

Hi Everyone,

Still no final word on our next round of Chemo. We were discharged yesterday after Grace completed her course of antibiotics. We will be home until Thurs. when we will return to discuss Grace's next round of chemo with the doc's. Looks like it will be an oral chemo and/or an oral hormone that can both be taken at home via her G tube. She will get these drugs daily for the next 6months. She will get finger pokes for her bloodwork and may need the occasional I.V. for platelet transfusions but they do not feel that it will be regularly enough to justify putting a 4th CVL in. We are very happy to be home and look forward to being home during her next round of treatment. The last 8 months living at the hospital has been really hard (exhausting and expensive) and we hope that we can now treat Grace as much as possible from home. Once Grace's next round of chemo is firmed up we'll let you know. Thanks very much for everyone's support through out the last 8 months. It would be impossible for us to have made it without each of you. Continue to pray for Grace to achieve and maintain good health.

Love,
Les

Final Pathology :-(

Hi Everyone,

Grace's 10th surgery went OK. Since this was her 3rd CVL it was positioned in an abnormal place so they had to make another incision on her chest to remove it. At first the incision caused her some discomfort but she seems to be fine now. Unfortunately we received some bad news on Thurs. Even though we were told on Tues. that everything was still looking benign, Thurs. evening the doc's came to see us and told us that one of the biopsies came back positive for Ependymoblastoma (Grace's original diagnoses). Ian and I were devastated. How could this cancer have lived through all of the chemo Grace has endured?? The surgeon has reassured us that this time he feels as though he has gotten it all but Grace's Onc. teams feels they must proceed forward with more chemo because of how aggressive her cancer is. We're devastated but have taken a couple of days to pull it together and are ready to continue our fight to save our baby's life. We do not know how the next few months will roll out. Since Grace's cancer has never been treated here before her Onc. team is consulting a doctor in the States who has treated two Ependymoblastoma patients in the past. We have been given the impression that her next round will be a lot less aggressive because they do not believe her body can endure another round of the chemo she just completed. She may even be at home for the majority of her next round. I'm not even sure if she will need her CVL put back in. We will find out details towards the end of this week. We will let you know once we do. Keep praying for our baby's good health.
Les

Surgery #10

Hi Everyone,

Just a quick note to let you know that Grace is going in for her 10th surgery today. It's just a small one. The gram negative infection that made her so unwell the week before last has recurred in her CVL so infectious disease does not feel we will be able to completely clear this bug unless they pull it out. Good news about this is once her CVL is out she can swim, play in sprinklers and have normal baths. The bad news is that without it she will have to endure a couple of weeks of IV antibiotics PIV (peripheral IV in her hand, foot, arm or where ever they can get it to stay in). Usually kids do not get there CVL out until 3-6 months post treatment (which would have been Nov. for Grace) but due to the infection this will happen today in the OR. So our hopes of getting home this week are no longer... maybe by next weekend if we are lucky. Still no word on final pathology. I'll keep you posted.

Keep praying for our baby's good health.
Love,
Les