This is very difficult to write. And I cannot go into all the details because its quite complicated. And I hesitate to even write this because its ever changing. But this is where we are now.
We found out in our appointment at Sloan that the remaining places on Jon's lungs unfortunately are growing. One of his tumor markers was also elevated. So Jon had more blood work this week and another CT scan. The blood work however came back normal. The doctor tells us he was very surprised and that this is good news! Although we are devastated these places are growing, we are very thankful we got in with Sloan as quickly as we did because through Dr. Bosl ordering more CT's is how this new news was discovered. Bottom line is unless God chooses to heal these residual masses, he is faced with surgery to remove places on his lungs or more chemo. Yes we are devastated, scared, anxious, stressed, overwhelmed BUT we must trust in God's promises and believe that He is going to use this for good. We are trying to stay positive and dwell on the blessings.
So it looks like now the next step will be a biopsy to figure out what type of cancer is growing so they know whether to do surgery or more chemo. The biopsy will take place around mid-July. We aren't sure which one to pray for so pray that God's will be done. Pray for wisdom for these doctors because when I say this is rare: I promise it is rare!! Only 2-5% of people with this cancer have masses leftover after chemo. Rare for it to skip the abdomen and go straight to the lungs. I tell you this because although we are at a great institution that sees this more often they still don't see it that much. So it's a good reminder to not put your trust in medicine and doctors but in Jesus, the only true healer!
I share all this with you so that you can pray specifically with us. We are praying for Jon's body to be healed.
On a positive note, we are on vaca in Dallas visiting Jon's sister. We will then fly to Phoenix on Monday to visit Jon's grandma, aunt, uncle and cousins. We are going to enjoy and relax! Although draggin 3 kids 2 and 4 on the plane was far from relaxing. LOL!!
Ill add pictures later. I can't figure it out!
Friday, June 28, 2013
Friday, June 21, 2013
Sloan-Kettering visit
We met with Dr. Bosl yesterday. He is a very impressive man. He was kind, caring and gentle. He has been in practice 36 years. He is very experienced and knowledgeable in his field in particular testicular cancer. He was extremely thorough with everything. The appointment took 2 hrs!
Because Jon's case is extremely rare Dr. Bosl needs to compile some additional information. There will be a couple of more tests over the next few weeks to determine what our next step will be.
We are praying for complete healing in Jon's body. We don't know if that will come through medicine or God performing a miracle but please join us in praying for complete healing. Jon is being prayed over by our elders and pastoral team this weekend.
Thank you from the bottom of our hearts for your prayer support!!
Because Jon's case is extremely rare Dr. Bosl needs to compile some additional information. There will be a couple of more tests over the next few weeks to determine what our next step will be.
We are praying for complete healing in Jon's body. We don't know if that will come through medicine or God performing a miracle but please join us in praying for complete healing. Jon is being prayed over by our elders and pastoral team this weekend.
Thank you from the bottom of our hearts for your prayer support!!
Tuesday, June 18, 2013
Heading to Memorial Sloan-Kettering
It has been quite a stressful, busy day but God paved the way and all additional things the doctor at Sloan needed will be in his hands tomorrow. Please pray for clarity for us and wisdom for the doctor as he reviews Jon's stuff and decides what would be the best plan of action. We will spend the day for "fun" in NYC tomorrow and celebrate our anniversary that is next week...8 years! We got tickets to David Letterman! Pray that we will be able to relax and enjoy the day as this appointment weighs heavily on our minds. Please also pray for the kids and their safety. This is the first time I've been this far away from them. Weird feeling. Thanks for your prayers!
This is the verse someone gave me recently:
Psalm 34:4
"I sought the Lord, and He answered me; He delivered me from all my fears."
This is the verse someone gave me recently:
Psalm 34:4
"I sought the Lord, and He answered me; He delivered me from all my fears."
Monday, June 17, 2013
Prayer request
We are heading to Atlanta right now (Monday night). The doctor at Sloan Kettering needs some additional tests so today sent us in major scramble mode to try to get scheduled for Tuesday at Emory. Then trying to get a family of 5 out the door in a matter of 3 hours was quite interesting but luckily Jon's mom was available to help!
The major prayer request is for the biopsy slides that the doctor has to receive from Emory before he will see Jon. Please pray that these will be expedited quickly and that Dr. Bosl will receive them by Wednesday if its God's will we see him this week. Otherwise we will have to postpone our trip until beginning of July. God knew all this beforehand and He has a plan. We have to trust Him even if this trip gets cancelled (kinda like the surgery in January that got postponed). God knew and had a reason and plan! And he does with this weeks appointment. Thanks!
The major prayer request is for the biopsy slides that the doctor has to receive from Emory before he will see Jon. Please pray that these will be expedited quickly and that Dr. Bosl will receive them by Wednesday if its God's will we see him this week. Otherwise we will have to postpone our trip until beginning of July. God knew all this beforehand and He has a plan. We have to trust Him even if this trip gets cancelled (kinda like the surgery in January that got postponed). God knew and had a reason and plan! And he does with this weeks appointment. Thanks!
Saturday, June 15, 2013
Life in the Fast Lane...headed to NYC.
Our lives never stop. I know this post is probably going to floor most of you because I haven't expressed a whole lot since our latest CT scan.
We left Jon's oncology office after receiving the CT results and both said, OK, we feel good about this decision to wait 3 months. It is what it is, and we will just have to try not to worry and move on. Well, I did just the opposite. As days passed by and Jon STILL had a cold/cough from long ago, he would wake up with headaches, etc. I became increasingly worried. My mind started going places it shouldn't go. Then, last Saturday night Jon and I had a date. He says to me, I just wished I would have asked the doctor what are the chances the spots that remain are a type of cancer cell outside of what we discussed (teratoma is the only cancer cell the doctor mentioned)? That sent me on the computer. I started researching other types of cancer cells it could be. Good idea to be informed and educated. Bad idea to read ALL the possibilities. Every night Jon and I would stay up late and I would read to him all the information on his type of cancer I could find. At times I would have to shut the computer and stop because I was almost having panic attacks. Monday, we decided that we should call Jon's oncologist and ask some additional questions and have some things clarified. We also prayed about and decided that we should move in the direction of a second opinion. And if we were going to seek a second opinion it was going to be from the best. Testicular cancer is a very rare cancer. To put it in perspective there are about 8,000 cases a year in comparison to 279,000 of prostate. 1 in every 6 men will be diagnosed with prostate cancer in his lifetime, a man has a 0.4% chance of having testicular cancer. There are 2 main types of testicular cancer. The first time Jon had the more common one that is easier to cure. This time he has the less common one that is a little harder to cure. There are 2 main facilities that are at the top when it comes to testicular cancer research, Indiana University Medical and Memorial Sloan-Kettering. We wanted a top doctor at one of these hospitals. After we spoke with Jon's oncologist (whom we have a lot of respect for and love), we definitely felt like we needed to seek advice from someone else and quickly. I woke up Thursday morning on a mission. Together Jon and I started calling both hospitals and finding out how to start the process of becoming a new patient. Things were falling into place more with Sloan-Kettering. We established a new patient and within hours they had received our medical records from Emory (thanks to our dear friend who works with Dr. Ritenour--Jon's urologist). Sloan-Kettering told me they could get Jon an appointment as early as the following week if his oncologist sent his records quickly. On Friday, I called Sloan and they had received EVERYTHING. I asked which doctors had an appointment and there were 2 appointments available, one with the top testicular cancer doctor at Sloan! Unbelievable. No connection, no referral, just God moving mountains for Jon to get in with a world renowned medical oncologist in testicular cancer research. It takes us WEEKS to get an appointment with his current oncologist in Atlanta. It takes MONTHS to get an appointment with his urologist. But God moved and this doctor had ONE appointment available. We will be seeing Dr. Bosl on Thursday in NYC. Please pray that we will have clarity. Please pray that Dr. Bosl will have wisdom in Jon's particular case. We will be driving to Atlanta on Tuesday to drop the kids off at my sisters. We will fly out Wednesday and come back Friday.
I also want to add that Memorial Sloan-Kettering is IN NETWORK for our health insurance! God is good because 2 years ago He led Jon to turn down a full-time teaching job to take a part-time job at Riverview Charter School. That part-time job turned into a full-time job the following year. We have great health insurance through the State. God paved the way and KNEW all this would happen. Besides the fact that he LOVES his school and all the people there! They have been above and beyond during this difficult time for him. They have loved and supported him more than he could have ever asked for. They have rallied around him and it has been such confirmation that God led him to Riverview at this very time! I also want to brag on him and say that he is the new Athletic Director for the upcoming school year. I am so very proud of him! He will continue to teach PE also. It will give him a new challenge and I know he will do a great job.
We don't know why Jon is having to go through this. It's not "fair" and he doesn't deserve it. But we know that it is for a reason and we know His name will be Glorified through it. During my week of freak out, my little Luke was listening in on too many of my conversations. So, one day as he talked to me I sensed he was worried about Jon. He had heard me on phone conversations expressing my concerns. He had become concerned as well. So we had a talk about how we are praying that Daddy's boo-boo's will go away. We talked about how they had gotten smaller, but they aren't gone. Together we came up with a surprise for Jon. Now, Every night the kids and I sit with Jon. We all lay hands on him and pray that God will heal him from every cancer cell in his body. We pray that the doctors will have wisdom. Little Luke also prays and it is the most precious prayer ever! I will try to tape it one night.
By the way, Jon is feeling fine. His cold is getting better and I think his headaches were coming from being so exhausted. He is getting to spend lots of time with the kids since his summer started Tuesday. Ironically, Emma Kate announced Monday that she wanted to throw away her diapers and potty train. Jon and I were not on board but did not feel like we could tell her no. So Jon's first week of summer has been spent indoors potty training:o) Honestly the first day was terrible but after that she totally gets it and is potty trained! So now we get to dump her off on my sister...LOL.
Thanks for your prayers. They mean more than you could know. I will definitely update the blog after the appointment.
We left Jon's oncology office after receiving the CT results and both said, OK, we feel good about this decision to wait 3 months. It is what it is, and we will just have to try not to worry and move on. Well, I did just the opposite. As days passed by and Jon STILL had a cold/cough from long ago, he would wake up with headaches, etc. I became increasingly worried. My mind started going places it shouldn't go. Then, last Saturday night Jon and I had a date. He says to me, I just wished I would have asked the doctor what are the chances the spots that remain are a type of cancer cell outside of what we discussed (teratoma is the only cancer cell the doctor mentioned)? That sent me on the computer. I started researching other types of cancer cells it could be. Good idea to be informed and educated. Bad idea to read ALL the possibilities. Every night Jon and I would stay up late and I would read to him all the information on his type of cancer I could find. At times I would have to shut the computer and stop because I was almost having panic attacks. Monday, we decided that we should call Jon's oncologist and ask some additional questions and have some things clarified. We also prayed about and decided that we should move in the direction of a second opinion. And if we were going to seek a second opinion it was going to be from the best. Testicular cancer is a very rare cancer. To put it in perspective there are about 8,000 cases a year in comparison to 279,000 of prostate. 1 in every 6 men will be diagnosed with prostate cancer in his lifetime, a man has a 0.4% chance of having testicular cancer. There are 2 main types of testicular cancer. The first time Jon had the more common one that is easier to cure. This time he has the less common one that is a little harder to cure. There are 2 main facilities that are at the top when it comes to testicular cancer research, Indiana University Medical and Memorial Sloan-Kettering. We wanted a top doctor at one of these hospitals. After we spoke with Jon's oncologist (whom we have a lot of respect for and love), we definitely felt like we needed to seek advice from someone else and quickly. I woke up Thursday morning on a mission. Together Jon and I started calling both hospitals and finding out how to start the process of becoming a new patient. Things were falling into place more with Sloan-Kettering. We established a new patient and within hours they had received our medical records from Emory (thanks to our dear friend who works with Dr. Ritenour--Jon's urologist). Sloan-Kettering told me they could get Jon an appointment as early as the following week if his oncologist sent his records quickly. On Friday, I called Sloan and they had received EVERYTHING. I asked which doctors had an appointment and there were 2 appointments available, one with the top testicular cancer doctor at Sloan! Unbelievable. No connection, no referral, just God moving mountains for Jon to get in with a world renowned medical oncologist in testicular cancer research. It takes us WEEKS to get an appointment with his current oncologist in Atlanta. It takes MONTHS to get an appointment with his urologist. But God moved and this doctor had ONE appointment available. We will be seeing Dr. Bosl on Thursday in NYC. Please pray that we will have clarity. Please pray that Dr. Bosl will have wisdom in Jon's particular case. We will be driving to Atlanta on Tuesday to drop the kids off at my sisters. We will fly out Wednesday and come back Friday.
I also want to add that Memorial Sloan-Kettering is IN NETWORK for our health insurance! God is good because 2 years ago He led Jon to turn down a full-time teaching job to take a part-time job at Riverview Charter School. That part-time job turned into a full-time job the following year. We have great health insurance through the State. God paved the way and KNEW all this would happen. Besides the fact that he LOVES his school and all the people there! They have been above and beyond during this difficult time for him. They have loved and supported him more than he could have ever asked for. They have rallied around him and it has been such confirmation that God led him to Riverview at this very time! I also want to brag on him and say that he is the new Athletic Director for the upcoming school year. I am so very proud of him! He will continue to teach PE also. It will give him a new challenge and I know he will do a great job.
We don't know why Jon is having to go through this. It's not "fair" and he doesn't deserve it. But we know that it is for a reason and we know His name will be Glorified through it. During my week of freak out, my little Luke was listening in on too many of my conversations. So, one day as he talked to me I sensed he was worried about Jon. He had heard me on phone conversations expressing my concerns. He had become concerned as well. So we had a talk about how we are praying that Daddy's boo-boo's will go away. We talked about how they had gotten smaller, but they aren't gone. Together we came up with a surprise for Jon. Now, Every night the kids and I sit with Jon. We all lay hands on him and pray that God will heal him from every cancer cell in his body. We pray that the doctors will have wisdom. Little Luke also prays and it is the most precious prayer ever! I will try to tape it one night.
By the way, Jon is feeling fine. His cold is getting better and I think his headaches were coming from being so exhausted. He is getting to spend lots of time with the kids since his summer started Tuesday. Ironically, Emma Kate announced Monday that she wanted to throw away her diapers and potty train. Jon and I were not on board but did not feel like we could tell her no. So Jon's first week of summer has been spent indoors potty training:o) Honestly the first day was terrible but after that she totally gets it and is potty trained! So now we get to dump her off on my sister...LOL.
Thanks for your prayers. They mean more than you could know. I will definitely update the blog after the appointment.
Thursday, May 30, 2013
Jon CT results...and the saga continues
It's not black, not white but gray. And Jon is a black and white person, how can this be?
There are still 4 spots on his scan (he started with 15-20). They are significantly smaller and obviously alot of spots are gone. Praise God! The oncologists exact words "I'm not happy about this scan but I'm content." Basically at this point it is a waiting game. These spots could be as simple as scar tissue but they could be a type of cell chemo doesn't take care of and surgery would be the only option. So we are keeping everyone on their knees and praying. I just saw my Starbucks friend Stephen again in Macon. Kinda cool! And he was reminding us that God is a healing God. We Believe that he can heal every cancer cell in Jon's body. He will have another follow-up scan in three months which is sooner than he would've had one if it would have been clear. We are still trusting in God that he is healing Jon's body. Please join us in praying for that!
There are still 4 spots on his scan (he started with 15-20). They are significantly smaller and obviously alot of spots are gone. Praise God! The oncologists exact words "I'm not happy about this scan but I'm content." Basically at this point it is a waiting game. These spots could be as simple as scar tissue but they could be a type of cell chemo doesn't take care of and surgery would be the only option. So we are keeping everyone on their knees and praying. I just saw my Starbucks friend Stephen again in Macon. Kinda cool! And he was reminding us that God is a healing God. We Believe that he can heal every cancer cell in Jon's body. He will have another follow-up scan in three months which is sooner than he would've had one if it would have been clear. We are still trusting in God that he is healing Jon's body. Please join us in praying for that!
Tuesday, May 28, 2013
Definitely back to life
And now I'm remembering why i never updated the blog before Jon's cancer! Jon has been finished with his chemo for 6 1/2 weeks! He is completely back to normal outside of his neuropathy and hearing loss (which we are still hoping is temporary). We are like an old couple. I will say something, and he says HUH?? So we both have to sit up and I have to yell across the family room at him! It is kinda entertaining. He also looks NORMAL. His hair has grown back and he even has facial hair again! We are so grateful to have our Daddy and "Jonathan" back:o)
Our lives with 3 kids 4 and under including multiples is never DULL. First of all a few weeks ago Luke found a baby snake in his room!! I left for Target for an hour alone one night. I got to Target (10 min. drive) and I get a phone call. Luke was in bed and saw something in his room moving. He got up to tell Jon. It was a SNAKE. We were both (the parents) freaked out, but of course Luke was as brave as ever! I just kept wondering where the Momma snake was! I am still having awful dreams about snakes being in our house!!
Secondly, I have not had a coffee table or end tables since the babies were 8 months. I decided my life would be harder trying to keep them away from these things so I just did without. I recently found a great deal on a beautiful coffee table/ottoman that I felt like fit our family well (it has a leather top!). Well, the second night we had it, Ryan busted his head on it! It turned out to be minor, but we were definitely worried when initially we saw blood running down his head and neck!
Ryan recently has some new found freedom! A couple of weeks after Jon's last treatment, Ryan started crawling out of the crib consistently. A week ago, it got out of control. He would crawl out and in a million times. He would not take a nap. I would go in there every time, put him back in his crib until I was exhausted and nap time was over. One night recently, I was sound asleep in bed. I woke up at 4:50AM, opened my eyes, and there I saw Ryan laying right beside me. I have no idea when he got in bed with me. He was as still as a church mouse. I'm sure my startled reaction woke him up and he just had a big smile on his face. So, this past Sunday, Ryan got a "big girl bed". Yep, that's what he calls it! Ironically, Emma Kate says she now wants a "big boy bed." Yea, they are very confused about their gender:o). And those of you feeling sorry for Emma Kate--DON'T! I was feeling sorry for her also that she still has to sleep in a crib until last night! We let them read together in Ryan's bed because Emma Kate wanted to be in a big bed. Well, it wasn't 2 minutes after we left the room, they were SO out of control. Running around the room, destroying things. I quickly came back to reality. Reality is, if Emma Kate gets a "big boy bed" then they will have complete access to one another. Not good! So, I told Emma Kate that I had to give Ryan 3-4 weeks to "adjust" to his "big girl bed" and then she would get hers. For now, we set hers up in Luke's room and she is allowed on occasion to have a sleepover with Luke:o)
This is a cute video of Luke. He loves the Lord with all his heart! He praises God and wants everyone else to praise and love God too! He has a depth about him that I never knew a 4 year old could have. I wanted you to be encouraged by this!
This is also a cute video of the babies. Is anyone thinking little Jon and little Donna?:o)
One last thing, I woke up Saturday morning, and said Honey, I have a great idea! Let's go to Savannah and get pictures of the kids at a Studio. I have not been in 2 years! It is exhausting to even think of going. So, we got the kids all ready and I even had time to quickly throw on some make-up myself. What was I thinking?? Do you know what it is like getting 2 2-yr olds pictures made?? Wow! We ended up having a family picture because Ryan was being very shy and would not cooperate at all and us holding him was the only way at first we could even get him in a shot. Then I bribed Emma Kate with M&M's and she had that fake smile on her face the whole time. Poor thing, she was really trying hard. So here is a "snapshot" of our day! By the way, Luke's picture was fabulous! I guess I should take them back when they are 4, maybe a better age for pictures! Take note of Ryan sitting off in the "corner" and do you like his Jake bandaid? Things got so bad with the twins after we left the picture place (Ryan ran from the back of Gymboree out the door with a shirt in his hand). Alarm going off and Jon running after him pretty much did Jon in. He took the twins to the car and strapped them in their car seats and turned on a movie and told me to take Luke for as long as I wanted to shop, ice cream, train ride, etc! So here is Luke on the train. I LOVE the age 4!!
Jon had his CT scan this past Thursday at Emory and we will drive to Atlanta again this Thursday to find out the results. I will try my best to post something on Friday. Thanks again for your prayers. We really appreciate it!
Our lives with 3 kids 4 and under including multiples is never DULL. First of all a few weeks ago Luke found a baby snake in his room!! I left for Target for an hour alone one night. I got to Target (10 min. drive) and I get a phone call. Luke was in bed and saw something in his room moving. He got up to tell Jon. It was a SNAKE. We were both (the parents) freaked out, but of course Luke was as brave as ever! I just kept wondering where the Momma snake was! I am still having awful dreams about snakes being in our house!!
Secondly, I have not had a coffee table or end tables since the babies were 8 months. I decided my life would be harder trying to keep them away from these things so I just did without. I recently found a great deal on a beautiful coffee table/ottoman that I felt like fit our family well (it has a leather top!). Well, the second night we had it, Ryan busted his head on it! It turned out to be minor, but we were definitely worried when initially we saw blood running down his head and neck!
Ryan recently has some new found freedom! A couple of weeks after Jon's last treatment, Ryan started crawling out of the crib consistently. A week ago, it got out of control. He would crawl out and in a million times. He would not take a nap. I would go in there every time, put him back in his crib until I was exhausted and nap time was over. One night recently, I was sound asleep in bed. I woke up at 4:50AM, opened my eyes, and there I saw Ryan laying right beside me. I have no idea when he got in bed with me. He was as still as a church mouse. I'm sure my startled reaction woke him up and he just had a big smile on his face. So, this past Sunday, Ryan got a "big girl bed". Yep, that's what he calls it! Ironically, Emma Kate says she now wants a "big boy bed." Yea, they are very confused about their gender:o). And those of you feeling sorry for Emma Kate--DON'T! I was feeling sorry for her also that she still has to sleep in a crib until last night! We let them read together in Ryan's bed because Emma Kate wanted to be in a big bed. Well, it wasn't 2 minutes after we left the room, they were SO out of control. Running around the room, destroying things. I quickly came back to reality. Reality is, if Emma Kate gets a "big boy bed" then they will have complete access to one another. Not good! So, I told Emma Kate that I had to give Ryan 3-4 weeks to "adjust" to his "big girl bed" and then she would get hers. For now, we set hers up in Luke's room and she is allowed on occasion to have a sleepover with Luke:o)
This is also a cute video of the babies. Is anyone thinking little Jon and little Donna?:o)
One last thing, I woke up Saturday morning, and said Honey, I have a great idea! Let's go to Savannah and get pictures of the kids at a Studio. I have not been in 2 years! It is exhausting to even think of going. So, we got the kids all ready and I even had time to quickly throw on some make-up myself. What was I thinking?? Do you know what it is like getting 2 2-yr olds pictures made?? Wow! We ended up having a family picture because Ryan was being very shy and would not cooperate at all and us holding him was the only way at first we could even get him in a shot. Then I bribed Emma Kate with M&M's and she had that fake smile on her face the whole time. Poor thing, she was really trying hard. So here is a "snapshot" of our day! By the way, Luke's picture was fabulous! I guess I should take them back when they are 4, maybe a better age for pictures! Take note of Ryan sitting off in the "corner" and do you like his Jake bandaid? Things got so bad with the twins after we left the picture place (Ryan ran from the back of Gymboree out the door with a shirt in his hand). Alarm going off and Jon running after him pretty much did Jon in. He took the twins to the car and strapped them in their car seats and turned on a movie and told me to take Luke for as long as I wanted to shop, ice cream, train ride, etc! So here is Luke on the train. I LOVE the age 4!!
Jon had his CT scan this past Thursday at Emory and we will drive to Atlanta again this Thursday to find out the results. I will try my best to post something on Friday. Thanks again for your prayers. We really appreciate it!
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