Wednesday, April 2, 2014
We decided it was best for our family if G came with Jacob and me this week. Gavin didn't really understand what J was having done. Jacob's nurses showed G the Novalis and even let him "drive" it. It was really cool. For now radiation is invisible medicine that is treating one of Jacob's brain tumors...or brain boo boos.
Thank you!!!
It was so much fun to come back to Orlando and be welcomed with so much love via the mail!! Jacob's board brightens our room!! Receiving all of these messages of encouragement really keep Jacob's spirits lifted!!
Mid week two update....
Jacob is having a really good week considering. Monday he didn't feel good and was having tummy pains, but by yesterday morning he was feeling better. We talked about making better food choices when he's not with me and drinking more water. Jacob has been taking naps frequently, because he is very tired, but other than that he is feeling fairly normal.
We saw Dr. Ramakrishna today after radiation, for the first time since Jacob started his treatment. He was on vacation last week and we saw a different doctor. It is required for patients in treatment to see a doctor at least every five treatments. Jacob was weighed and his blood pressure was taken, both normal. Dr. Ramakrishna asked Jacob how he was feeling and told Jacob that if he has more frequent headaches or nausea he can prescribe a steroid like prednisone, which will take care of those side effects. I asked him about the risk of facial nerve damage and according to him there is only a 3% chance of damage to the facial nerve long term. Dr. Ramakrishna did say that there may be some temporary weakness over time, but if that does happen it shouldn't last more than a few months. Before I could even ask him about Avastin he asked us if there was a plan for Jacob to start after treatment. He explained to me why Dr. Smith and himself changed their minds and decided not to put Jacob on Avastin during the photon treatment and I totally get it. PM me if you want me to explain. Jacob asked him a few questions, like being able to be outside in the sun and Dr. RK (lets call him that to save some typing) said it was fine as long as Jacob keeps his scalp covered. The appointment was very comfortable. Gavin sat nicely and played Swampy, while Jacob talked about his spring break and showed Dr. RK photos. We really like Dr. RK! It was a good appointment. Jacob will see him again next week on Wednesday. We were nicely surprised too to find out that Jacob is scheduled for 27 treatments instead of 30!! That's three days early we will be heading home!! (I think:)) If things go as planned.
I want to mention too that Jacob's nurses have been so cool with Gavin all week. Even though the Cancer Center isn't just for kids they really go out of their way to make them comfortable. I met a family yesterday with an 11 year old son, who originally lived in Bainbridge, GA and traveled to see Dr. Smith in Gainesville at Shands. They moved to Celebration when the brain tumor group moved to Orlando. They followed Dr. Smith like we did, but picked up and relocated their entire family. Their son was having his first radiation treatment yesterday. He looks like he has been through chemo. Gavin sat and chatted with him while he waited and my heart melted. His mom and dad were so nice and his beautiful baby sister slept peacefully in her car seat. The nurses had the Novalis room covered in Stars Wars stuff, because this little boy loves Star Wars. It was super cool and worth sharing about :).
Other than radiation we enjoyed a pic nic in Delaney Park yesterday and a trip to City Walk to meet TD's parents and sister, who drove over from St. Pete to have dinner with us at Bubba Gumps Shrimp, which was delicious. Jacob and the kids enjoyed a game of miniature golf, while Pop and I watched. Today we visited the Central Florida Zoo in Sanford and had a very nice time. It was a neat little zoo, that reminded me very much of our Jr. Museum at home, with more exotic animals.
Tomorrow we will be hanging out at the RMH. I think we have had enough excitement for the week. Gavin has definitely kept us on our toes. I hope Jacob will get some more homework done. (Math - Jason :)) Much of what was sent home last week Jacob can't finish because the font is too small. Guess he will have to work on that this weekend with his CC TV. I will be washing clothes, organizing and prepping for our very early and long day Friday. Jacob's radiation will be at 7:00 am and then we will hightail it to Gainesville for 10:00 am appointment at the ocularist. It's a three hour appointment to have the art work started on Jacob's new prosthetic. I'm excited to get two of the three appointments done, but I'm prepared for it to be a very tiring and stressful day!
After that we will be Tally bound.
I have posted a lot of photos on Facebook. I will try to get some on my Learning to Make Lemonade Blog tonight.
Thank you all for your continue love and support!! We are deeply moved by our amazing community!! Team Jacob ROCKS!!
Jacob is having a really good week considering. Monday he didn't feel good and was having tummy pains, but by yesterday morning he was feeling better. We talked about making better food choices when he's not with me and drinking more water. Jacob has been taking naps frequently, because he is very tired, but other than that he is feeling fairly normal.
We saw Dr. Ramakrishna today after radiation, for the first time since Jacob started his treatment. He was on vacation last week and we saw a different doctor. It is required for patients in treatment to see a doctor at least every five treatments. Jacob was weighed and his blood pressure was taken, both normal. Dr. Ramakrishna asked Jacob how he was feeling and told Jacob that if he has more frequent headaches or nausea he can prescribe a steroid like prednisone, which will take care of those side effects. I asked him about the risk of facial nerve damage and according to him there is only a 3% chance of damage to the facial nerve long term. Dr. Ramakrishna did say that there may be some temporary weakness over time, but if that does happen it shouldn't last more than a few months. Before I could even ask him about Avastin he asked us if there was a plan for Jacob to start after treatment. He explained to me why Dr. Smith and himself changed their minds and decided not to put Jacob on Avastin during the photon treatment and I totally get it. PM me if you want me to explain. Jacob asked him a few questions, like being able to be outside in the sun and Dr. RK (lets call him that to save some typing) said it was fine as long as Jacob keeps his scalp covered. The appointment was very comfortable. Gavin sat nicely and played Swampy, while Jacob talked about his spring break and showed Dr. RK photos. We really like Dr. RK! It was a good appointment. Jacob will see him again next week on Wednesday. We were nicely surprised too to find out that Jacob is scheduled for 27 treatments instead of 30!! That's three days early we will be heading home!! (I think:)) If things go as planned.
I want to mention too that Jacob's nurses have been so cool with Gavin all week. Even though the Cancer Center isn't just for kids they really go out of their way to make them comfortable. I met a family yesterday with an 11 year old son, who originally lived in Bainbridge, GA and traveled to see Dr. Smith in Gainesville at Shands. They moved to Celebration when the brain tumor group moved to Orlando. They followed Dr. Smith like we did, but picked up and relocated their entire family. Their son was having his first radiation treatment yesterday. He looks like he has been through chemo. Gavin sat and chatted with him while he waited and my heart melted. His mom and dad were so nice and his beautiful baby sister slept peacefully in her car seat. The nurses had the Novalis room covered in Stars Wars stuff, because this little boy loves Star Wars. It was super cool and worth sharing about :).
Other than radiation we enjoyed a pic nic in Delaney Park yesterday and a trip to City Walk to meet TD's parents and sister, who drove over from St. Pete to have dinner with us at Bubba Gumps Shrimp, which was delicious. Jacob and the kids enjoyed a game of miniature golf, while Pop and I watched. Today we visited the Central Florida Zoo in Sanford and had a very nice time. It was a neat little zoo, that reminded me very much of our Jr. Museum at home, with more exotic animals.
Tomorrow we will be hanging out at the RMH. I think we have had enough excitement for the week. Gavin has definitely kept us on our toes. I hope Jacob will get some more homework done. (Math - Jason :)) Much of what was sent home last week Jacob can't finish because the font is too small. Guess he will have to work on that this weekend with his CC TV. I will be washing clothes, organizing and prepping for our very early and long day Friday. Jacob's radiation will be at 7:00 am and then we will hightail it to Gainesville for 10:00 am appointment at the ocularist. It's a three hour appointment to have the art work started on Jacob's new prosthetic. I'm excited to get two of the three appointments done, but I'm prepared for it to be a very tiring and stressful day!
After that we will be Tally bound.
I have posted a lot of photos on Facebook. I will try to get some on my Learning to Make Lemonade Blog tonight.
Thank you all for your continue love and support!! We are deeply moved by our amazing community!! Team Jacob ROCKS!!
Thursday, March 27, 2014
The short version, for those of you who don't like my rambling - Jacob is doing great and he will get his treatment first thing tomorrow. We will then be home bound for the weekend
It's almost Friday and that makes me happy. "Happy Friday" will take on a whole new meaning tomorrow.
Jacob will have his 5th treatment at 8:30 in the morning and we will then pack up for the weekend and be Tally bound!! The sounding of that in my head brings tears to my eyes. Oh how I love Tallahassee.
I was told today we get to keep our room at the Ronald McDonald House, so that is great news!
I'm not sure what I expected this week. Sometimes it's hard to reflect back on what you thought might be after it has happened. It was an emotional rollercoaster for me for sure. Being away from my husband and other children is painfully hard, especially when they are having struggles of their own. I know it is hard for Jacob to be away too. He misses his family and friends and even school. I could go into great details about the moments of agony worrying about Jacob, or wanting to be at home or what I need to do, but instead I am going to be grateful.
I'm thankful that the treatments are short and Jacob is comfortable for the most part during radiation. I am thankful that his nurses are so nice and likeable. I am thankful that Jacob has only suffered mild nausea and his bouts of being tired and confused are short. I am thankful that today is the only day he has had head pain on the right side. I am thankful for the PRAYERS, messages, texts, calls and support we have received this week. I am thankful for the financial support we have received to help cover gas, food and a place to stay. I am thankful for our extended family and friends at home who are helping keep our family running smoothly while I am away. I am thankful for the laughter and smiles Jacob and I shared (The baseball game was AWESOME!!) and our moments of comfort. I am thankful for the 3 miles I was able to walk/run pain free. I am thankful for time on my mat with David Swenson (look that one up for fun:)). I am thankful for technology that keeps me in touch with Gavin and Brie, thankful for Motrin and for tissues. I am thankful for the lovely people in this home and Cancer Center who put things in perspective and remind me to remain humble. Tonight I am thankful to Olivia and Emily for visiting us and lifting my spirits! Lastly, even when I feel lost in the madness of this broken world God finds a way to show me all the beauty He has set in front of me and for that I am thankful.
Wishing all of you a weekend full of fun and family!
To all my mamas - I'm coming home and can't wait to see you Saturday!! Ready to run happy!!
It's almost Friday and that makes me happy. "Happy Friday" will take on a whole new meaning tomorrow.
Jacob will have his 5th treatment at 8:30 in the morning and we will then pack up for the weekend and be Tally bound!! The sounding of that in my head brings tears to my eyes. Oh how I love Tallahassee.
I was told today we get to keep our room at the Ronald McDonald House, so that is great news!
I'm not sure what I expected this week. Sometimes it's hard to reflect back on what you thought might be after it has happened. It was an emotional rollercoaster for me for sure. Being away from my husband and other children is painfully hard, especially when they are having struggles of their own. I know it is hard for Jacob to be away too. He misses his family and friends and even school. I could go into great details about the moments of agony worrying about Jacob, or wanting to be at home or what I need to do, but instead I am going to be grateful.
I'm thankful that the treatments are short and Jacob is comfortable for the most part during radiation. I am thankful that his nurses are so nice and likeable. I am thankful that Jacob has only suffered mild nausea and his bouts of being tired and confused are short. I am thankful that today is the only day he has had head pain on the right side. I am thankful for the PRAYERS, messages, texts, calls and support we have received this week. I am thankful for the financial support we have received to help cover gas, food and a place to stay. I am thankful for our extended family and friends at home who are helping keep our family running smoothly while I am away. I am thankful for the laughter and smiles Jacob and I shared (The baseball game was AWESOME!!) and our moments of comfort. I am thankful for the 3 miles I was able to walk/run pain free. I am thankful for time on my mat with David Swenson (look that one up for fun:)). I am thankful for technology that keeps me in touch with Gavin and Brie, thankful for Motrin and for tissues. I am thankful for the lovely people in this home and Cancer Center who put things in perspective and remind me to remain humble. Tonight I am thankful to Olivia and Emily for visiting us and lifting my spirits! Lastly, even when I feel lost in the madness of this broken world God finds a way to show me all the beauty He has set in front of me and for that I am thankful.
Wishing all of you a weekend full of fun and family!
To all my mamas - I'm coming home and can't wait to see you Saturday!! Ready to run happy!!
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