Good News & Round 2 done
Hi Everyone.
As most of you know, Grace had a follow up MRI on Monday. This MRI was to determine if Grace's cancer has progressed or if we were on the road to recovery. Good news is that we seem to be on the road to recovery!!
Ian and I had the opportunity to sit down with Grace's Neruo Oncologist to review 3 MRI's Monday evening... presurg, postsurg and the one that she had on Monday. Since Grace's resection happened so quickly (within 36 hours of determining that her mass was malignant) we did not have the opportunity (as most parents do) to sit down with the Neurosugery team to review presurgery MRI's. In retrospect, this was probably a good thing because Ian and I were stunned at the presurgery MRI. Grace's mass was close to the size of an orange in the left lobe of her brain encompassing the majority of this lobe. The healthy part of the brain was pushed forward (towards her forehead) and back (towards her spine) in an "accordion" fashion... so scary.... it's hard to believe that she was able to function. Her post surgery MRI showed a massive hole where the tumour once was with 3 "highlighted area's of interest" (malignant cells) that represented the .5% that the surgeons were unable to remove due to high risk location. .5% does not seem like much, but when it is .5% of such a massive tumour, it is enough to cause great concern. Mondays MRI seems to have showed that 2 of the 3 "highlighted area's of interest" have disappeared (chemo working??) but they can not guarantee this because the brain has bounced back to encompass about 50% of the post surgical hole so it is now a different shape and it is hard to compare to the presurg MRI. However, they believe that these two spots are no longer a concern leaving us to only worry about the one. This spot (the larger of the three) has not changed since the postop MRI. This leaves the team to believe that there is a possibility that it may not be malignant and there is a chance that it may be post operative scaring (this would be very very good news). So... the doc's will redo an MRI in 6 weeks to once again take a look at this spot and at that time be better equipped to determine what it is (pray for post operative scaring). No matter what the outcome, we will stay on course completing all 5 rounds of high dose chemo followed by 1 round mega dose chemo and rescue with bone marrow transplant. Grace's cancer is so highly malignant that even with an NED (no evidence of disease) post chemo... it still reoccures in 40% of children. Therefore we must do everything possible to rid her body of every single cancer cell... those we can see and those that may exist but not be detected.
This round Grace was not vomiting as much as last but she still came down with mucacitis (mouth sores) so she did not eat or drink for a week. She had C diff (bowel infection) again as well as a fever for 6 days that resulted in having to have a "fungal work-up" (cat scans etc.) We couldn't find any specific bugs so she has been maintained on broad spectrum anti-biotics. This round she required 2 blood transfusions and she has started having adverse reactions to blood products so during both she required additional meds (benadryl). On Monday she is having surgery to insert a Gtube - feeding tube inserted trough the abdomen (since she will most likely get mucacitis with each round and will not eat/drink) this will help us make sure she gets proper nutrician via her gut. On Friday she will have a bone marrow harvest from her hip so we can bank a back up sample to the umbilical cord blood we have stored in case something does not go well with her initial transplant. Then on Saturday she will start round 3 of chemo.
Grace definitely has her weak days but is generally strong and determined. We are so thankful for all your support. This support makes Ian and I strong and we are then able to transfer this strength to Grace when she is weak. Then it seems like just as I'm starting to get weak (after 4-5 brutal days of 24hr care for Grace) she begins to bounce back and then gives me strength.... She's amazing! In a weird way cancer enriches your life.... embracing every moment, every gesture of kindness and appreciating friends and family on a level hard to put into words. Imagine crying every day... somedays due to sadness, but others as a result of joy so great just because your baby got to come home for a few hours and kiss her kitty cat... again, tears of joy...
Thanks to all of you for supporting the St. Elizabeth fundraiser and Brett's "Walk for Grace". Next week we will be purchasing Grace's feeding pump (thanks to these fundraisers, the latest and greatest available on the market) without feeling the financial burden. Brett, Kim, Jen and all others involved (too many to mention) in their organization, we love you and thank you again.
Love,
Les
P.S. On a sad note, Grace's little friend did not survive her cardiac arrest.
As most of you know, Grace had a follow up MRI on Monday. This MRI was to determine if Grace's cancer has progressed or if we were on the road to recovery. Good news is that we seem to be on the road to recovery!!
Ian and I had the opportunity to sit down with Grace's Neruo Oncologist to review 3 MRI's Monday evening... presurg, postsurg and the one that she had on Monday. Since Grace's resection happened so quickly (within 36 hours of determining that her mass was malignant) we did not have the opportunity (as most parents do) to sit down with the Neurosugery team to review presurgery MRI's. In retrospect, this was probably a good thing because Ian and I were stunned at the presurgery MRI. Grace's mass was close to the size of an orange in the left lobe of her brain encompassing the majority of this lobe. The healthy part of the brain was pushed forward (towards her forehead) and back (towards her spine) in an "accordion" fashion... so scary.... it's hard to believe that she was able to function. Her post surgery MRI showed a massive hole where the tumour once was with 3 "highlighted area's of interest" (malignant cells) that represented the .5% that the surgeons were unable to remove due to high risk location. .5% does not seem like much, but when it is .5% of such a massive tumour, it is enough to cause great concern. Mondays MRI seems to have showed that 2 of the 3 "highlighted area's of interest" have disappeared (chemo working??) but they can not guarantee this because the brain has bounced back to encompass about 50% of the post surgical hole so it is now a different shape and it is hard to compare to the presurg MRI. However, they believe that these two spots are no longer a concern leaving us to only worry about the one. This spot (the larger of the three) has not changed since the postop MRI. This leaves the team to believe that there is a possibility that it may not be malignant and there is a chance that it may be post operative scaring (this would be very very good news). So... the doc's will redo an MRI in 6 weeks to once again take a look at this spot and at that time be better equipped to determine what it is (pray for post operative scaring). No matter what the outcome, we will stay on course completing all 5 rounds of high dose chemo followed by 1 round mega dose chemo and rescue with bone marrow transplant. Grace's cancer is so highly malignant that even with an NED (no evidence of disease) post chemo... it still reoccures in 40% of children. Therefore we must do everything possible to rid her body of every single cancer cell... those we can see and those that may exist but not be detected.
This round Grace was not vomiting as much as last but she still came down with mucacitis (mouth sores) so she did not eat or drink for a week. She had C diff (bowel infection) again as well as a fever for 6 days that resulted in having to have a "fungal work-up" (cat scans etc.) We couldn't find any specific bugs so she has been maintained on broad spectrum anti-biotics. This round she required 2 blood transfusions and she has started having adverse reactions to blood products so during both she required additional meds (benadryl). On Monday she is having surgery to insert a Gtube - feeding tube inserted trough the abdomen (since she will most likely get mucacitis with each round and will not eat/drink) this will help us make sure she gets proper nutrician via her gut. On Friday she will have a bone marrow harvest from her hip so we can bank a back up sample to the umbilical cord blood we have stored in case something does not go well with her initial transplant. Then on Saturday she will start round 3 of chemo.
Grace definitely has her weak days but is generally strong and determined. We are so thankful for all your support. This support makes Ian and I strong and we are then able to transfer this strength to Grace when she is weak. Then it seems like just as I'm starting to get weak (after 4-5 brutal days of 24hr care for Grace) she begins to bounce back and then gives me strength.... She's amazing! In a weird way cancer enriches your life.... embracing every moment, every gesture of kindness and appreciating friends and family on a level hard to put into words. Imagine crying every day... somedays due to sadness, but others as a result of joy so great just because your baby got to come home for a few hours and kiss her kitty cat... again, tears of joy...
Thanks to all of you for supporting the St. Elizabeth fundraiser and Brett's "Walk for Grace". Next week we will be purchasing Grace's feeding pump (thanks to these fundraisers, the latest and greatest available on the market) without feeling the financial burden. Brett, Kim, Jen and all others involved (too many to mention) in their organization, we love you and thank you again.
Love,
Les
P.S. On a sad note, Grace's little friend did not survive her cardiac arrest.
posted by Lesley at 10:20 p.m.
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