Spirit Guides
Throughout Dante's journey, he has been watched over by 3 spirit guides; He has a hippo, which reminds him to be strong. He has a rhino, which reminds him to be tough. And he has a tiger, to remind him to be fierce. You might have seen them appear in some of the photos we have included. Throughout our journey Dante has been unbelievably strong, tough and fierce in fighting this cancer. He has also had a lot of positive energy and prayers sent his way ,and a whole lot of ice cream melted on his behalf....That being said...
...Chris and I met with Dr. Grana on Monday. She was smiling throughout the conversation as we discussed that she is 99% sure that Dante is cancer-free. That one spot that showed up on the PET scan accounts for the 1% of doubt, but really, everyone thinks that it's scar tissue. His AFP is within normal the range. Just to make sure that he is clear, we're at the hospital for one more round of chemo (minus one of the drugs).
Once Dante "recovers" from this round (about 3 weeks), we will do another scan and AFP to check. Then he will be scanned every 3 months for a year, then every 6 months and then once a year for 5 years. We will probably get to go down to only one doctor visit per month after his levels come back up. His immune system will not fully recover for 4-6 months, so he cannot return to pre-school until May at the earliest. The type of cancer that he has has a very low chance of recurrence after the first 6 months, so we will still be keeping a close eye on things for a bit longer.
Dr. Grana was very pleased, and amazed, that he went through the protocol so quickly and without many troubles. I told her that it was probably because we had hardly left the house in 4 months!
As for the side effects of his chemotherapy, his kidney function test (GFR) came back normal. That's a relief. So we know that there has been no damage to his kidneys. We will do another test after this round just to be sure. His lungs can't be checked until he's mature enough to perform the breathing test (around 5-6 years old). His audiogram shows that he does have mild to moderate hearing loss in both ears. We knew this to be a common side effect of one of the drugs, Cisplatin. They are recommending hearing aides, but we'll be having him tested for speech and language development first. We probably won't move ahead on those until after his recovery from this round as well, so we can test his hearing again.
Dante is doing okay with this hospital stay. He is definitely feeling better, as is shown in his feisty spirit throughout the day. Sleeping has been a little off due to the plethora of "stimuli", but tonight we had no roommate and a quiet room and he went right to sleep. He is already starting to lose his appetite, but I wonder if it's not just the environment.
We have so much to celebrate and so many people to thank this holiday season. We are looking forward to enjoying time with friends and family and keeping Dante healthy until his levels return to normal.
Our thoughts go out to another family whose daughter, Ashiah, lost her battle with leukemia this morning. She was 2 also. We saw her often and even played together in music class and followed nurse Nancy around. She had a lot of spunk and even said to Chris once about Carina - let me hold that baby!
We cannot say it enough - Thank you. For everything.
...Chris and I met with Dr. Grana on Monday. She was smiling throughout the conversation as we discussed that she is 99% sure that Dante is cancer-free. That one spot that showed up on the PET scan accounts for the 1% of doubt, but really, everyone thinks that it's scar tissue. His AFP is within normal the range. Just to make sure that he is clear, we're at the hospital for one more round of chemo (minus one of the drugs).
Once Dante "recovers" from this round (about 3 weeks), we will do another scan and AFP to check. Then he will be scanned every 3 months for a year, then every 6 months and then once a year for 5 years. We will probably get to go down to only one doctor visit per month after his levels come back up. His immune system will not fully recover for 4-6 months, so he cannot return to pre-school until May at the earliest. The type of cancer that he has has a very low chance of recurrence after the first 6 months, so we will still be keeping a close eye on things for a bit longer.
Dr. Grana was very pleased, and amazed, that he went through the protocol so quickly and without many troubles. I told her that it was probably because we had hardly left the house in 4 months!
As for the side effects of his chemotherapy, his kidney function test (GFR) came back normal. That's a relief. So we know that there has been no damage to his kidneys. We will do another test after this round just to be sure. His lungs can't be checked until he's mature enough to perform the breathing test (around 5-6 years old). His audiogram shows that he does have mild to moderate hearing loss in both ears. We knew this to be a common side effect of one of the drugs, Cisplatin. They are recommending hearing aides, but we'll be having him tested for speech and language development first. We probably won't move ahead on those until after his recovery from this round as well, so we can test his hearing again.
Dante is doing okay with this hospital stay. He is definitely feeling better, as is shown in his feisty spirit throughout the day. Sleeping has been a little off due to the plethora of "stimuli", but tonight we had no roommate and a quiet room and he went right to sleep. He is already starting to lose his appetite, but I wonder if it's not just the environment.
We have so much to celebrate and so many people to thank this holiday season. We are looking forward to enjoying time with friends and family and keeping Dante healthy until his levels return to normal.
Our thoughts go out to another family whose daughter, Ashiah, lost her battle with leukemia this morning. She was 2 also. We saw her often and even played together in music class and followed nurse Nancy around. She had a lot of spunk and even said to Chris once about Carina - let me hold that baby!
We cannot say it enough - Thank you. For everything.
5 Comments:
I am so happy for you. You and Chris have been so courageous. You give me hope each day and I know that you have won this battle. Merry Christmas, the best present in the world is a healthy child. Love Barbara
By Anonymous, at 7:51 AM
Celebrating with you, Jen, Chris, Carina, and most of all, DANTE!!!!
To health and vitality...may they both return swiftly and with fervor!!! Wishing a peaceful season of light and celebration of new beginnings!!
Love and light, Jenny
By Anonymous, at 8:03 PM
I cannot think of a better reason than that to celebrate. I want to thank you and Chris for sharing this tremendous journey with us. You're both such wonderful writers. Please continue to keep us up to date on this miraculous family of yours...
Cindy
By Anonymous, at 6:16 AM
I am so happy to hear this good news for your family. You will continue to be in my thougths. Wishing you a wonderful holiday season!
Kimi (a PEA)
By Anonymous, at 9:41 PM
You da man, Dante! You guys have been in our thoughts every day. Hope the final round really is the final round!
Paul
By Anonymous, at 2:06 PM
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