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Dec 17, 2016 Latest post:
Jun 28, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Now that we've told our kids we are ready to share this with you too- Jon has Nodular Lymphoctye -Predominate Hodgkins Lymphoma or NLPHL for short! It is a form of Lymphoma, Man that's hard to believe, isn't it... Here is a quick run down of how all of this came to be about.
- Jon went in for an ultrasound of his Gallbladder on Friday, October 28th. Why you might ask... indigestion. Jon had some indigestion that was making it uncomfortable for him to sleep at night, and we assumed that since it seemed just like the pain I had when my gallbladder was acting up we, along with his Dr., thought it probably was his gallbladder so they wanted to take a peek. The sonographer saw something and she wasn't sure what it was. So after a few phone calls (like 5) we heard back that they did see a mass, and we were off for a CT scan that afternoon. We got the call that they didn't know much but that they did see an 8cm mass (the size of a baseball) in his abdomen along with other lymph nodes that were enlarged, making it look like Lymphoma.
- On Monday, October 31st, Jon went in for another CT scan to see if they saw anything in his chest and they didn't so that was great. They also did a lot of blood work, all of which came back perfect, another great thing. We sat and waited in the office for a chance to see his Dr. and talk to someone face to face, which happened very quickly . The Dr. said that he couldn't be 100% sure without a biopsy, but it looked like Lymphoma. I'm not sure which day was worse Friday or Monday, but at this point it really doesn't matter.
-On Wednesday, November 2nd Jon had a biopsy of one of the lymph nodes. They thought they did great getting 8 samples so it was time to wait.
-Insert a very long 5 day waiting period here...
-On Tuesday, November 8th- we finally got the call that it came back positive for Lymphoma. They did not have enough cells to figure out which type of Lymphoma we were dealing with, so we needed another biopsy/surgery to get more or best case all of the big lymph node to try and figure out which type of lymphoma he has.
-On Monday, November 21st Jon had surgery to find out what type of lymphoma we are dealing with. He also had a bone marrow biopsy done at the same time.
-On Wednesday, November 23rd We got the call that Jon has Nodular Lymphoctye-Predominate Hodgkins Lymphoma. This is a sister lymphoma and has a very high cure rate.
- On Wednesday, November 30th- We met with our Oncologist. Our oncologist decided that he needed a PET scan to double check the stage and to help make the best plan for treatment. He also shared with us that this is a very rare cancer and while it has probably been around as long as all of the other lymphomas it has just been discovered in the last 50 years. This means there isn't as much research about it as there has been with other cancers. Our Dr. felt like it would be in our best interest to get a second opinion. He told us that Omaha is a great place to go for a treatment plan as they work with this type of Cancer often and are more familiar with it.
-On Thursday, December 8th- Jon had a PET scan and the results were good. There was no new Cancer to be found. The PET scan showed us exactly what we had hoped for so that was a relief.
-On Thursday, December 15th - Up to Omaha we go... We saw a Dr. in Omaha who specializes in Lymphoma and she gave us a treatment plan. We will have 6 rounds of Chemo. A round of chemo is defined as treatment every other week for four weeks, basically one week on and one week off. This means Jon will have Chemo for the next 6 months. Before Chemo can begin Jon will have a port put in. We are hopeful that he will have his port in and our 1st round of Chemo done before I go back to work on January 2nd, but nothing is on the books yet.
- The good news is this cancer has a 90% or better cure rate!
-We are sad, but we are hopeful and we are ready for a fight. Jon is the strongest man I know and he is going to beat this.
Here is what we now ask of you. This is a big one, so please, respect our wishes. We are asking that you DO NOT share this with your children. We want Landon and Addyson to have the freedom to share this with whoever they want to share it with. There is a chance that they want to keep school and friends normal, and not tell anyone, and there is a chance they want to share this news with all of their friends. We want them to have some control over this uncontrollable situation. We thought it would be best if you, the parents, knew in case Landon or Addyson decided to share this information with your child or children as we do not want you to be caught off guard. We are just doing our best to make this situation as manageable for a 7 and 9 year old as we possibly can. We don't want anyone to approach them when and if they are not ready to talk about it.
We really appreciate everyones kindness, love and friendship. Please be patient with us and look for your updates here as it is too hard to navigate through multiple text messages and phone calls.