Scans look good no new tumor growth.
Thanks again for all your positive thoughts and prayers!
Melissa
Friday, April 30, 2010
Tuesday, April 27, 2010
Don't malfunction
Connor had a Full Head and Spine MRI today. We left early in the morning (as we have done so many times now), it doesn't take us nearly as long to get out the door as it used to.Remember when you had a newborn and you packed a HUGE bag of stuff to bring with you? but eventually you realized you didn't need 85% of that extra stuff and you were able to downsize to a smaller bag? We've downsized.
Unfortunately even though we know the In's and Out's of the MRI process, it doesn't lesson the heavy burden on our hearts, and it doesn't erase the flash backs of the very first time Connor had one. We try and distract ourselves, while hoping for the very best results. Getting MRI's will be something Connor will continue to do until he's at least 18, we're learning that these feelings are just going to be par for the course.
I never thought things would start to get easier, but they truly have. We have started to settle into a routine, and there are many days we are almost able to "forget" that we are walking this path. We've been able to connect with support groups of other families that have children with similar brain tumor's. Some have completed treatment, some are just beginning, other's have lost their battle, but have so much information to offer, and are still fighting for others in the trenches.
A while back I wrote about what our "Normal" would look like, and although our "Normal" is unconventional, it's uncanny how similar it is to other's in the same situation. Other families of children with brain tumor's understand poor appetites, Anaesthesia induced "pirate" behavior, port access, ataxia, low ANC count and a multitude of other things associated with this illness. The road isn't as scary when you connect with other's who are walking the same path.
Our favorite anaesthesia nurse,returned from Maternity leave, and was there for Connor's MRI today. This Nurse was with us for SOOOO many of Connor's radiation treatments, and became very close to us. She supported us, and got us through many rough wake-up's. Seeing her today was very comforting. Connor was a trooper, requested bubble gum scent for his anaesthesia. We were able to get out of there in four hours.
Blood counts were still low this week ANC was 260 (he needs to get to 1,000 by Monday to avoid another delay & reduction), but on the positive side his hemoglobin counts are up so he didn't need a transfusion today.
Bad news, no flavored creamer in the MRI waiting room, in fact no Coffee in the waiting room. Too many people have spilled, so they have removed it. For those who don't know my husband: coffee flows through his veins, He does not operate without coffee. We were able to acquire some at the cafe to avoid him malfunctioning.
We are a little over 7 months into our journey, and half way though. We continue to be amazed by our dude. He really gives us strength.
What did you say? Today Connor asked our favorite nurse if she had a girl or a boy? (she had a girl), and what her name was??(Kate), and if she had cancer? (no she was happy and healthy) ... whoa back up, what an odd question. But favorite nurse didn't skip a beat (another reason we love her so) she gets it, she understands what these kids have gone through, and continue to go through.
So just some advice for other's starting out this path (in no particular order of importance):
1. Create a process that works for you and your family, and Keep it simple.
2. It does get easier, connect with people who have been there, it's ok to allow yourself to feel.
3. Don't worry about fitting your life into a mold, spend your time living a meaningful life.
4. Trust others who are sincere
5. Things won't always go the way you had hoped, but try to find the positive.
6. Don't forget to take care of yourself to avoid malfunction
7. Remember who you are doing this for, and how much they need you to be strong for them.
Tomorrow we have an audiogram, and we should find out the results from the MRI within a few days. We appreciate all the positive thoughts and prayers you are sending this way.
Unfortunately even though we know the In's and Out's of the MRI process, it doesn't lesson the heavy burden on our hearts, and it doesn't erase the flash backs of the very first time Connor had one. We try and distract ourselves, while hoping for the very best results. Getting MRI's will be something Connor will continue to do until he's at least 18, we're learning that these feelings are just going to be par for the course.
I never thought things would start to get easier, but they truly have. We have started to settle into a routine, and there are many days we are almost able to "forget" that we are walking this path. We've been able to connect with support groups of other families that have children with similar brain tumor's. Some have completed treatment, some are just beginning, other's have lost their battle, but have so much information to offer, and are still fighting for others in the trenches.
A while back I wrote about what our "Normal" would look like, and although our "Normal" is unconventional, it's uncanny how similar it is to other's in the same situation. Other families of children with brain tumor's understand poor appetites, Anaesthesia induced "pirate" behavior, port access, ataxia, low ANC count and a multitude of other things associated with this illness. The road isn't as scary when you connect with other's who are walking the same path.
Our favorite anaesthesia nurse,returned from Maternity leave, and was there for Connor's MRI today. This Nurse was with us for SOOOO many of Connor's radiation treatments, and became very close to us. She supported us, and got us through many rough wake-up's. Seeing her today was very comforting. Connor was a trooper, requested bubble gum scent for his anaesthesia. We were able to get out of there in four hours.
Blood counts were still low this week ANC was 260 (he needs to get to 1,000 by Monday to avoid another delay & reduction), but on the positive side his hemoglobin counts are up so he didn't need a transfusion today.
Bad news, no flavored creamer in the MRI waiting room, in fact no Coffee in the waiting room. Too many people have spilled, so they have removed it. For those who don't know my husband: coffee flows through his veins, He does not operate without coffee. We were able to acquire some at the cafe to avoid him malfunctioning.
We are a little over 7 months into our journey, and half way though. We continue to be amazed by our dude. He really gives us strength.
What did you say? Today Connor asked our favorite nurse if she had a girl or a boy? (she had a girl), and what her name was??(Kate), and if she had cancer? (no she was happy and healthy) ... whoa back up, what an odd question. But favorite nurse didn't skip a beat (another reason we love her so) she gets it, she understands what these kids have gone through, and continue to go through.
So just some advice for other's starting out this path (in no particular order of importance):
1. Create a process that works for you and your family, and Keep it simple.
2. It does get easier, connect with people who have been there, it's ok to allow yourself to feel.
3. Don't worry about fitting your life into a mold, spend your time living a meaningful life.
4. Trust others who are sincere
5. Things won't always go the way you had hoped, but try to find the positive.
6. Don't forget to take care of yourself to avoid malfunction
7. Remember who you are doing this for, and how much they need you to be strong for them.
Tomorrow we have an audiogram, and we should find out the results from the MRI within a few days. We appreciate all the positive thoughts and prayers you are sending this way.
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