We made it home safely and things have finally settled down so that I can update everyone. Jackson was so happy to see mommy and daddy so we had some quality play time upon our return!
We had two appointments today that really turned out to be one long appointment. It is a great set up at Duke! Instead of having us run around the hospital/ clinic to see the various specialists they all lined up and came into the room to see us one by one. The attention to detail and care is unlike any other I have ever experienced. They truly put the patient's interests first.
The clinic visit consisted of many neuro exams and consults regarding Reyn's recovery. He passed the exams with flying colors! After the neuro exams we observed Reyn's new MRI scan along with the oncologist and discussed future treatment. It was interesting to see where the tumor had been removed and the portion that remained. The portion on his frontal lobe has been removed and the remaining portion lies on his temporal lobe. Doctors estimate approximately 70% of his tumor was removed. As for the remaining portion, Duke will monitor him with regularly scheduled MRIs in the future. He will have 3 more this year, 3 the following year, and 2 after that if all goes as planned. As long as the tumor remains the same no further treatment is required....Praise the Lord! If the time comes that Reyn requires more treatment he will receive an oral chemotherapy treatment for a year. His tumor has deletions of chromosomes 1p and 19q and studies have shown this tumor type will respond favorably to chemotherapy.
The doctors also confirmed that he has an "Oligodendroglioma, grade 2, benign tumor." And the comment made by the oncologist was -- "If you are going to live with a tumor, this is the one you want." So we are praising God for this! Just 3 months ago we were given the diagnosis of "Oligoastrocytoma" from Emory here in Atlanta. As many of you have read from previous posts, an Oligoastrocytoma is a much more aggressive tumor and it does not respond as favorably to chemo if needed. At the time we asked all of you to pray with us that the astrocyte cells would be removed from his tumor OR at the very least be the smaller portion of his tumor. God heard our prays and answered them as the doctor confirmed today-- NO ASTROCYTE cells were found in his tumor! I believe in my heart that they were removed according to the prayers of so many. Isn't it amazing to know that the God of the universe hears us when we cry out to Him?!
When asked about Reyn's prognosis the neurosurgeon told us his prognosis is GOOD and significantly improved given the tumor type and fact that the majority of the tumor was removed. It is a positive overall outlook.
So, where does this leave us? We will have regular check ups with Duke. No further treatment at this time. Reyn can resume all normal activites and return to work. He is so excited to get back to doing what he loves best and working with his team again!
We still seek your continued prayers for our family and ask that you pray for the following:
1. Pray for Reyn's energy levels to improve. He is still healing from surgery but doctors say most patients have their energy back by month 3 or 4 following the procedure.
2. Pray for the entire family as we resume a normal schedule again and return to work.
3. Pray for complete healing
4. Pray for no tumor growth or change in the years to come
5. Pray that we will continue to trust God daily
6. Most importantly, that God will be glorified through our story and testimony
We love you all!
Party of four
Tuesday, March 26, 2013
Monday, March 25, 2013
Welcome Spring
The Connellys are welcoming Spring with open arms! This has been the hardest winter of our lives, figuratively speaking as well! I told someone recently this was the best and worst winter of my life. God blessed us with such a sweet baby girl as we struggled to comprehend Reyn's brain tumor diagnosis. The last 4 months have been an emotional rollercoaster. I have spent some days feeling almost normal and accepting that God has this under control. At other times I just avoided God completely or shook my fists at Him in anger. Im so glad that God loves me in spite of myself and that I dont serve a fickle God! He is faithful and He continues to remind me of that each day.
This afternoon Reyn and I head back to Duke for his follow up appointment. He is scheduled for an MRI at 8:15 pm tonight followed by two appointments on Tuesday. He and I are flying up this time so it should be a short trip. He has a clinic appointment at 10 am tomorrow and an appointment with the surgeon at 12:45pm to discuss the new MRI results. I am anxious and excited to see what the MRI reveals post surgery. He estimated that he removed approximately 70% of the tumor through surgery so the MRI will tell the story now. He let us know that surgery would not eliminate the entire tumor so Reyn may undergo chemotherapy in the future. He has certain deletions on particular chromosomes that make chemo a favorable option to treat any remaining tumor....but this we will learn more about during our appointments with the doctor. I'm still praying for a clear MRI because we know God is capable! But we are willing to accept whatever the MRI shows. I'm sure many people think I am delusional to continue to expect miraculous healing but since my God parted the Red Sea, a brain tumor is a small task!
I will update after our appointments tomorrow. In the meantime please pray for safety as we travel and pray that our babies do well while we are away. Thank you to Grammie and Mimi for taking care of our babies!
This afternoon Reyn and I head back to Duke for his follow up appointment. He is scheduled for an MRI at 8:15 pm tonight followed by two appointments on Tuesday. He and I are flying up this time so it should be a short trip. He has a clinic appointment at 10 am tomorrow and an appointment with the surgeon at 12:45pm to discuss the new MRI results. I am anxious and excited to see what the MRI reveals post surgery. He estimated that he removed approximately 70% of the tumor through surgery so the MRI will tell the story now. He let us know that surgery would not eliminate the entire tumor so Reyn may undergo chemotherapy in the future. He has certain deletions on particular chromosomes that make chemo a favorable option to treat any remaining tumor....but this we will learn more about during our appointments with the doctor. I'm still praying for a clear MRI because we know God is capable! But we are willing to accept whatever the MRI shows. I'm sure many people think I am delusional to continue to expect miraculous healing but since my God parted the Red Sea, a brain tumor is a small task!
I will update after our appointments tomorrow. In the meantime please pray for safety as we travel and pray that our babies do well while we are away. Thank you to Grammie and Mimi for taking care of our babies!
Friday, March 15, 2013
Visitors Welcome
Hello all!
Reyn is doing great and feeling better day by day! His biggest complaint is that he tires easily but that is to be expected at this point. He is up for visitors now so if you have been waiting to see him, come on over! ;) I will need to schedule visits so that he is not overwhelmed with everyone showing up on the same day so please email me if you want to come over. We would love to see you and catch up with everyone.
jordan.a.connelly@gmail.com
I will have more of an update after our visit to Duke on March 25th and 26th but the initial reports seem very favorable!
Thank you for all of the calls and emails. We love you guys.
Jordan
Reyn is doing great and feeling better day by day! His biggest complaint is that he tires easily but that is to be expected at this point. He is up for visitors now so if you have been waiting to see him, come on over! ;) I will need to schedule visits so that he is not overwhelmed with everyone showing up on the same day so please email me if you want to come over. We would love to see you and catch up with everyone.
jordan.a.connelly@gmail.com
I will have more of an update after our visit to Duke on March 25th and 26th but the initial reports seem very favorable!
Thank you for all of the calls and emails. We love you guys.
Jordan
Meet Baby Grier
Many of you have asked so here is a picture of our sweet baby Grier! She is 2 months old now and she weighed in at 11 lbs. 10 oz. at her 2 month visit, which places her in the 100th percentile....the girl likes to eat! She is doing great!
Here is a picture of her with her big brother Jackson. Makes me want to squeeze them both!
And last but not least, one of my favorites. How in the world did our photographer get her to pose like this? And stay asleep throughout the entire process? I call her the baby whisperer.
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| Grier's Newborn Pictures |
Tuesday, March 5, 2013
I think I can, I think I can....
Hello all!
Things are going well at the Casa de Connelly. I'm usually so worn out by the end of the day that the above stolen from the little engine that could is my chant....but it's a good exhaustion! I'm so relieved that my hubby and children are doing well....and the benefit of being exhausted is that I sleep like a rock at night ;). I must thank our newborn daughter for enjoying her sleep as well. She has been sleeping through the night (for the most part) since she reached 4 weeks!! And now she is even sleeping 9-10 hours at night. I'm not bragging, ok maybe I am a little ;). We are very grateful that God saw fit to give us a rather easy baby in the middle of everything else going on in our lives. I just joke that God knew we couldn't handle anymore drama...so he gave us a girl made of mostly sugar.
And Jackson is doing great! He loves his baby sister and asks her to play "Thomas the train" with him quite often. I keep telling him soon enough she will be able to play with him but for now baby Grier enjoys her sleep. Jackson had his 2 year wellness appointment today and he continues to grow like a weed. He is in the 95th percentile for height...gonna be tall like daddy!
Reyn is doing phenomenally well. He is gaining energy each day and feeling better day by day. Last Friday was a tough day for him as he came off of the steroid he was on. It was a relatively quick taper off of the drug and side effects can include joint pain. He experienced severe joint pain that day but was feeling much better the next day. I'm still baffled at his quick recovery from such a major surgery! God is so good! For the first time in a long time last night felt like a normal night here at home. Reyn spent the evening making fun of me for watching "The Bachelor" on TV and made witty remarks throughout the entire show. It was fun to laugh with my hubby again....even if it was over "The Bachelor." I think he will be up for visitors soon so I will be sure to let everyone know. I'm still making him rest as much as possible!
Thank you again for all of the prayers, phone calls and emails.
Love,
Jordan
Things are going well at the Casa de Connelly. I'm usually so worn out by the end of the day that the above stolen from the little engine that could is my chant....but it's a good exhaustion! I'm so relieved that my hubby and children are doing well....and the benefit of being exhausted is that I sleep like a rock at night ;). I must thank our newborn daughter for enjoying her sleep as well. She has been sleeping through the night (for the most part) since she reached 4 weeks!! And now she is even sleeping 9-10 hours at night. I'm not bragging, ok maybe I am a little ;). We are very grateful that God saw fit to give us a rather easy baby in the middle of everything else going on in our lives. I just joke that God knew we couldn't handle anymore drama...so he gave us a girl made of mostly sugar.
And Jackson is doing great! He loves his baby sister and asks her to play "Thomas the train" with him quite often. I keep telling him soon enough she will be able to play with him but for now baby Grier enjoys her sleep. Jackson had his 2 year wellness appointment today and he continues to grow like a weed. He is in the 95th percentile for height...gonna be tall like daddy!
Reyn is doing phenomenally well. He is gaining energy each day and feeling better day by day. Last Friday was a tough day for him as he came off of the steroid he was on. It was a relatively quick taper off of the drug and side effects can include joint pain. He experienced severe joint pain that day but was feeling much better the next day. I'm still baffled at his quick recovery from such a major surgery! God is so good! For the first time in a long time last night felt like a normal night here at home. Reyn spent the evening making fun of me for watching "The Bachelor" on TV and made witty remarks throughout the entire show. It was fun to laugh with my hubby again....even if it was over "The Bachelor." I think he will be up for visitors soon so I will be sure to let everyone know. I'm still making him rest as much as possible!
Thank you again for all of the prayers, phone calls and emails.
Love,
Jordan
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