Chris’s Story

Site created on July 8, 2014

Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.

Chris was officially diagnosed with Nodular Lymphocyte-Predominant Hodgkin's Lymphoma this July.  We have known for quite some time that something wasn't quite right!  His symptoms started on April 12th (I remember - it was the start of a hectic Holy Week for us!) He experienced everything from nausea, headaches, weight loss, fevers, night sweats, hives, and a terrible dry cough.  He had many doctor appts., and every appt. led to a different round of blood work or scans.  Nothing every came back completely normal, but nothing was leading us in a definitive direction either.  It was a very strange progression of symptoms - as one symptom started to disappear, it was replaced with something else crazy.  Finally we had our first CT scan done on June 17th, and the radiologist immediately came back to us and his doctor stating that Chris had lymphoma.  This was incredibly scary and devastating news for us.  

The following weeks were an absolute whirlwind of additional blood work tests, scans, and even surgery to have a lymph node removed.  This would ultimately tell us what we were dealing with.  On Monday, July 7th, we had a followup oncology appt. for the surgery, where we learned the official type of lymphoma (there are many...)  We have also learned that it is at least Stage 3.  On Monday, July 14th, Chris will have a bone marrow biopsy to see if it is present in the bone marrow already.  If it is, that changes it to Stage 4.

This next week is going to be QUITE a crazy week!  Chris has a few additional tests regarding his heart and oxygen levels to make sure that his body can handle the drugs for the chemotherapy.  He is young and strong so I am not worried about this.  :-)  Following the bone marrow biopsy on Monday, July 14th, he will have surgery on Tuesday, July 15th to have a port put in underneath his left collarbone (he is still recovering from surgery on his right side).  This will give all of the doctors easy access to his blood while saving his veins.  On Wednesday, July 16th, we will take Chemo 101 together, and then are fortunate to have an additional appt. for a 2nd opinion with a doctor at the University of Minnesota, Dr. Bruce Peterson.  So far, we have been working through MN Oncology with Dr. Patrick J. Flynn, who has been great, but we are being good advocates for ourselves and getting a 2nd opinion.  Then, depending on how that appt. goes, Chris has his first chemo treatment next Thursday, July 17th - one month after learning that he has cancer.

These last 4 months have been very difficult while we waited for answers.  Now that we have our diagnosis, we are off to the races!  As of now, Chris treatment plan will involve 12 sessions of chemo, 1 treatment every other week.  No radiation or steroids are part of the plan at this time.  As much as chemo does not sound fun, I am strangely looking forward to this, as it will start to treat these awful symptoms and help Chris to feel better!

We can NOT thank you all enough for your prayers, messages, and kind gestures.  We are incredibly blessed to have a wide network of friends and family who truly love and support us.  We don't want to go on this journey alone so that you for going with us!  Please sign the guest book and send Chris lots of positive messages and prayers.  :-)   

Now... time to CRUSH IT!!!

Newest Update

Journal entry by Heather Nelson

Hey everyone,

Wow - it feels so strange to be back here, writing an update on Chris. I haven't looked at this in 4 years. I am using this platform now to update our friends and family with our newest development. We know that many of you know different stages of the story, and we thought it would be best to put all of this information in one place.

In general, the last 4 years have been great! Definitely not without their ups and downs, but in general Chris' health has been steady and he has been in remission this summer for 4 YEARS! (Can you believe it?!) This January, Chris started to experience some symptoms that seemed all too familiar. After initial exams for strep and influenza came back negative, I started to get concerned and we began to explore other possibilities. I'll (try) to give the readers' digest version here. 

6 months of multiple appointments, biopsies, surgeries, etc. finally led up to the dreaded news in April: - Chris' lymphoma appears to have returned. Or strangely enough, it may even be residual and has just taken 4 years to resurface as it is a very indolent type of cancer. One can understand how devastating this news can be. During this time, thankfully, his symptoms seem to have resided instead of continuing to progress as we experienced during the spring of 2014. 

As soon as we received this news, we were back to MN Oncology the next day (with a new oncologist because Dr. Flynn retired last year) trying to figure out the next step, and possibly prep for chemo in the immediate future. Because of the lack of symptoms currently present, he did NOT want to start a chemo regimen immediately, as it was going to be much more detrimental to his health than the cancer that was currently in his body. His strategy was to "Watch and Wait". This was hard news to swallow. As anyone who has experienced illness knows, the waiting is the toughest part. In 2014, once we had a treatment plan, we had a goal and felt so good about being able to start to concur this. This was not the case this spring. We left that appointment, with more scans and appointments in place, and were told to come back sooner if he immediately started to experience anything new. Let me tell you - the moment you cough or experience anything that would be normal, your brain takes you on a crazy journey analyzing every little thing. This is just not great for anyone's mental well-being. We asked about getting a second opinion and he completely agreed with that. So before we had even left the parking lot, I was on the phone with the U of M, praying that Dr. Bruce Peterson, (the man who changed our course of treatment last time and played an integral part of saving Chris' life,) had not retired yet. He had not, but was in Ireland! :-) At this point in time, it was the middle of April, and he was to return in May, scheduling out to the end of June, and we would have to wait to do anything until he returned.

Well, since there appeared to be no rush to start treatment, we were okay with this. Fast forward to the first Monday in May, and we received a call from the U of MN. They said that Dr. Peterson moved things around and agreed to see Chris that week! (This man is a Godsend). We had an appointment later that week, and he was every bit as caring and thorough as before. There is nothing else in the world that matters when you are speaking to him. As he did in 2014, he not only inquired about the current situation and symptoms but he really took a look at the whole picture, going back 20 years even to make sure he had the complete picture. He had already had all of the newest pathology results sent to him, and had spent a lot of time researching elements before our meeting. After many questions he says "Chris, I'm not convinced that you have lymphoma." Ummmm... what?!?! Of course we wanted to believe this, but it sounded like this was the beginning of more tests and studies. 

He informed us that he used the same pathologists that he did in 2014, and that everyone from all hospitals was in agreement with the diagnosis in 2014, (whew - that's good! ;-P) but that they had not come to a consensus on the results from the current lymph node removal, and that they wanted to do some further research. He asked Chris to contact all of the other hospitals around the country that he had tests done (BTW - way before his cancer diagnosis there has been a long history of goofy lymph node things), and have everything he could find from the last 20 years sent to him, thinking that looking at the full history may shed more light on everything. 

So, Chris did his homework, and had everything sent to him. Before we left, we asked him maybe the most important question. We asked "If this does come back as the same Nodular Lymphocyte-Predominant Hodgkin Lymphoma as his oncologist was suggesting, do you think we should begin treatment immediately, or should we wait?" And he was in agreement that we needed to observe and act when necessary, but not now. While we didn't love the answer, we were happy that there was a consensus. 

Fast forward again to a couple of weeks ago, when we get a call in the evening from Dr. Peterson himself. (I told you this guy was amazing!) He says, "Chris, my team has done the research, and we have determined that you do NOT have Lymphoma, but that you have, (are you ready for this?) "REACTIVE HYPERPLASIA WITH PROGRESSIVE TRANSFORMATION OF GERMINAL CENTERS". Huh?!?!?! What you all need to know - THIS IS A BENIGN CONDITION that involves enlarged lymph nodes!  :-) I am not sure how much of the rest of anything I processed after that. The take away is this is extremely rare (even more rare than the crazy version of the Hodgkins Lymphoma that he had) and is most commonly confused with Lymphoma! (You can learn more about it by going to the Genetic and Rare Disease Information Center website.) 

Of course we wanted to believe this, but we still had one doctor saying that he had cancer, and one saying it is something else. Dr. Peterson said we could go to Mayo, etc. for a tiebreaker if we wanted, but that he had faith in what his team had found. We decided to take this info back to MN Oncology and have one more discussion. This happened this morning.

Dr. Lemma, (Chris' new oncologist) had already received all of the news and test results from the U and reviewed everything before we met with him. The good news - he is also in agreement with the results from the whole hematology team of pathologists from the U of M! Essentially, the original pathologist who was reviewing Chris' slides under the microspore of the biopsy said the cells look like the lymphoma from before, but that there was still something weird about the cell structure, making it abnormal, but couldn't confirm the cancer. Dr. Lemma was originally going to have it sent to the United Hospital pathologists for a 2nd opinion, but now that we had a 2nd opinion from the U of M he doesn't feel that is needed at all and is in complete agreement with this new diagnosis. 

Wow. This is exactly what I had been hoping and praying for for months, but now we can truly be comfortable with all of this news.

So what is next? Essentially nothing! Chris will continue to do his regular oncology checkups, watch for anything abnormal (as you do), and add yearly regular scans back into the mix. But for now, we are rejoicing in this news, and are prepping for a trip to Ireland in a couple of weeks for our 10 year anniversary!

Thank you all for your love, support, thoughts, prayers, good vibes, you name it. All is well. Thanks be to God. 

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