Thursday, July 11, 2013
The continual roller coaster
Again, I hesitate to write because our situation literally changes by the day and week. So basically the decision on the next step completely rests on Jon's tumor marker (his HCG number). Well, his tumor marker is jumping around. One week it is low, one week it is high. The doctor is trying to get a "pattern" with it. So far, there is no pattern! So Jon will continue to get his blood work done weekly. It is super confusing. And there is so much more detail I could write but it is just too involved. Again, the next step is either surgery or more chemo. These residual masses on his lungs could be one of 2 things and each require a different treatment. Please pray that God will give the doctors wisdom and that he will give us a peace about the situation. We are under a great deal of stress and emotionally this is very difficult. Please especially pray for Jon. I cannot imagine being under the stress he is under and dealing with this heavy of stuff! He needs some extra prayers just for his well being!
Thursday, July 4, 2013
Emergency 9-1-1
We had a great time in Dallas with Aunt Sara. We got to see her new house and be in "her world." It was such a great and special time especially for the kids.
Here we are feeding the geese in a beautiful part of Dallas called Highland Park. The geese were very friendly! (sometimes a little too friendly)
There are 2 people I would love to meet. President George Bush (43) and Michael Jordan. Since we were in Dallas we couldn't pass up the chance to go to the new library and museum. It was really cool and Luke learned a ton. Jon is not real into these kinds of things so my mom, Luke and I went.
Luke feeding the geese and trying not to get bitten!
These cute bears at a park near Sara's house.
The babies petting the goat at the Dallas Zoo.
Ryan LOVES animals. He wants to become friends with ANY animal he comes in contact with. So when he leaned his head onto the glass and said "AWWW". This is how the panther responded...not too thrilled! Funny thing is Ryan didn't even MOVE when he did it!
This is everyone outside the Savannah airport. They were ready to go to TEXAS!!
This is when Luke's oxygen saturation was low. He was getting oxygen. He did not like that at all.
Below is Luke getting his hour long breathing treatment. He was a trooper and loved the movies that a Children's hospital has to offer!
Had to add this one in here. This is Jon in the hospital cleaning his shoes after Luke had thrown up all over them! You know Jon and his OCD behaviors!:o)
Jon's uncle is a farmer. This was the highlight of the trip for Ryan! He LOVES tractors and big buses and trucks.
Here we are feeding the geese in a beautiful part of Dallas called Highland Park. The geese were very friendly! (sometimes a little too friendly)
Luke feeding the geese and trying not to get bitten!
These cute bears at a park near Sara's house.
The babies petting the goat at the Dallas Zoo.
Ryan LOVES animals. He wants to become friends with ANY animal he comes in contact with. So when he leaned his head onto the glass and said "AWWW". This is how the panther responded...not too thrilled! Funny thing is Ryan didn't even MOVE when he did it!
This is everyone outside the Savannah airport. They were ready to go to TEXAS!!
I have had a sneaky suspicion that Luke's allergy to dogs is getting worse. If someone has an inside dog, and he walks into their house he begins sneezing and itching his eyes. Also, if a dog licks him or their tail hits him he often breaks out in hives. So I did go to Sara's prepared with meds and inhaler (she has a dog). So I did notice that his allergy was getting worse each day. I did hear some wheezing toward the end of the trip so I gave him his inhaler and tried to get him outside as much as possible. We got on the plane Monday and headed to Phoenix and I began to see his allergy was getting worse and worse. I continued giving him the inhaler but it didn't seem to be helping. On the car ride to Amy's (Jon's cousins where we were staying in Phoenix) Luke got very upset and wanted me to hold him. He wouldn't drink anything, or talk. We pulled over and I held him. We talked about going to urgent care but he said he could be brave. We put him back in his car seat and headed to Amy's. By the time we got there he was bawling. We got him out and got him calm but started to realize the severity of the situation. He completely stopped talking, wouldn't eat or drink, turned pale and then threw up. I was in the process of calling our pediatrician and the nurse could hear how bad his wheezing was over the phone and advised us to take him to the children's hospital ER. I gave him another 2 puffs of the inhaler and we headed to the Phoenix Children's Hospital. He was very quiet on the way and laboring to breath. I never panicked but I was getting really concerned. We got there and they were VERY swift in getting us in. They listened to him right away and whisked us to a room. Immediately the respiratory therapist came in and put a mask on him. The doctor came in. Everyone was SO great. They gave him steroids and gave him an hour long breathing treatment. He was clearly having an asthma attack. After that his oxygen saturation was still low so they observed him for a few hours. They finally felt comfortable discharging him but sent him home with another inhaler on double what he normally takes and steroids. In 2 days he was doing just fine, but this is how we started our Phoenix vacation.
This is when Luke's oxygen saturation was low. He was getting oxygen. He did not like that at all.
Below is Luke getting his hour long breathing treatment. He was a trooper and loved the movies that a Children's hospital has to offer!
Had to add this one in here. This is Jon in the hospital cleaning his shoes after Luke had thrown up all over them! You know Jon and his OCD behaviors!:o)
Please pray for us. At times like this we do not feel like we can take anymore stress! Sometimes I feel like I could just crumble and melt. I told Jon we are trying to see how many hospitals we can visit across the country. Jon so far has gone to 2 in Atlanta and New York. Luke has gone to Orlando, Bluffton, and Phoenix. And I have been in Savannah. We don't need to visit anymore hospitals in anymore states.
We have had a great visit with Jon's family and especially his grandmother, Roma who is 93! She is so sweet and the kids LOVE her and she LOVES them. Here are some pictures.
Jon's uncle is a farmer. This was the highlight of the trip for Ryan! He LOVES tractors and big buses and trucks.
Always nice to have a "Nanny" on the trip! They all wanted to be with her on take off from Dallas! Jon and I just sat over by ourselves and enjoyed watching her...LOL. She really debated about coming with us but I told her I knew why she was there when Luke had to go to the ER! She stayed with the twins!
Friday, June 28, 2013
It's a roller coaster!
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!
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 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.
Subscribe to:
Posts (Atom)