The Past Several Months....

Okay. This is going to be a long post. I want to, as briefly as possible (good luck with that), share the history of Robert's health this year. So, for all those who are curious, here goes.

Starting in January or February, Robert starting having congestion and sinus symptoms, as well as some flat, red, non-itchy spots on his body. Well, days turned into weeks and the symptoms got worse instead of better so about 2 months into it he finally went to a doctor. We really thought it was just a sinus infection that maybe needed some antibiotics to kick it out. The nurse practitioner prescribed antibiotics and said that maybe the rash was something fungal and he got some cream to see if that would help. After a round of antibiotics, still the same. So they gave him a different antibiotic. Still nothing. Then a 3rd antibiotic. Somewhere in the middle of all the antibiotics he started getting ulcers in his mouth. On May 1st the pain he was experiencing in his ears and throat was so bad that he went to the ER. They did bloodwork and a CT scan of his sinuses and said to follow up with an ENT specialist. He went to an ENT (who has turned out to be amazing) and he prescribed him steroids to see if he would feel better on those. And he did! They helped so much. I had my old Robert back. But as he tapered down on them he felt terrible again. The doctor thought it might be an auto-immune disorder and did all sorts of bloodwork for that, but everything came back negative. At some point the ulcer on the roof of his mouth turned into a hole which grew and grew. The ENT even took a biopsy of an ulcer and it came back negative. He finally sent him to a rheumatologist. He only saw the rheumatologist once. And after test results came back negative he referred him to a dermatologist at Mayo Clinic. I guess for the rash? We were confused about that one and Robert's insurance isn't contracted with Mayo Clinic so Robert called the ENT again and explained what was going on and the ENT had him come back in for one more biopsy of the mouth and also of his nose.

So, he was having sinus symptoms, congestion, fatigue, mouth ulcers, skin rash and this hole. And the hole was making it more difficult for him to talk, and the pain in his mouth was making it difficult for him to eat. My always healthy Robert was so not healthy and hadn't been for a good 4 months.

On June 8th, a Monday night, after the kids had already gone to bed, the ENT, Dr. Altman, called Robert. I just remember Robert talking to him and all of a sudden saying, "I don't like that word, Dr. Altman." Of course that got my attention and I just stared at him until the phone call was over. And then he told me, the biopsy results had come back positive for lymphoma. The pathologist still wasn't sure what kind of lymphoma it was, but Dr. Altman wanted to call and let Robert know as soon as possible so he wasn't surprised when an oncology office called the next day to set up an appt. I freaked out so much worse than Robert did.

A couple of days later he went into the oncologist's office and was diagnosed with NK/T cell Lymphoma (nasal type) - so basically the cancer started in his nasal cavity and ate a hole in his hard palate. It's extremely rare and aggressive. It is more common in Asian populations. And it has a high recurrence rate. So, the plan was to start a lighter chemo and also radiation in 2 weeks. Then after 5 weeks of that a heavier chemo during which he wouldn't be able to work. And he needed to start eating a high calorie diet to try to prep his body. They scheduled him to have a port (a device in the right side of his chest that they put the chemo drugs through) put in, to have a PET scan, MRI, and bone marrow biopsy the next week.

He had all the testing done and then went to an appt with the radiation oncologist on Wednesday June 15th. I went to pick him up from that appt and found out that the PET scan results were back, that the cancer had spread to multiple areas in his body, that the treatment plan was going to totally change - heavy chemo starting the following Tuesday and, hey, he wouldn't be able to work at that point. So, our only source of income was going to be gone in less than a week's time. That was a hard day for both of us.

His sister came home from her LDS mission that day, ironically enough, and his mom and sister headed down to Phoenix from where they live in Utah the following Monday to help out.

Robert's mom, Robert and I headed to the oncology office on Tuesday for the first day of chemo, while Aunt Vickie and my mom watched the kids. We got there and found out that Dr. Choi, the oncologist, had spoken with the leading Lymphoma specialist in the state at the University of Arizona and that doctor had recommended changing the chemo regimen to something that would work better for Robert's particular kind of lymphoma. And that new regimen would need to be authorized by Robert's insurance so we would have to wait until the following Tuesday to start chemo. We were disappointed that we weren't going to get started on chemo right away, but at the same time, that was kind of a miracle, because Robert and I had been specifically praying that the doctor would be able to pick out the right medication to treat his cancer. And we learned that his bone marrow was clean and also the MRI came back normal.

It was so painful for him to eat so his doctor ordered a feeding tube for him, which he had placed the following Monday. He had a rough couple of days recovering from that, even though the doctor increased his pain meds to try to help.

On Tuesday, June 28th he went in for his first day of chemo. Here is a picture of him all hooked up and ready to go!:

The days of chemo are long - he has 6 hour days Tuesday-Friday, and then a 3 hour day the following Tuesday, and then a 2 week break between rounds. I have been going with him and we are soooo grateful for Robert's mom and his sister Vickie for watching the kids so I can go be with him. Thankfully we have smart phones that can keep us entertained, plus they have tablets there with movies on them and the nurses and other patients can be entertaining too - the pharm tech there has decided Robert looks like Orlando Bloom and calls him Orlando : P.

One day Aunt Vickie helped the kids make paper flowers:

Round 1 of chemo was okay - nausea and fatigue were definitely there though. But by the end the rash was gone and a raised lesion on his forearm was flat and very faded. And his mouth pain was gone too (at least, it was controlled by the pain meds now).

But, on Thursday after round one was done, July 7th, we noticed his feeding tube was bleeding a bit and after calling the home health nurse, she recommended we get him checked out. So it was evening and we found someone to watch Aiden (Breena and Joshua were spending the night at my mom's house) and we headed to the ER. Robert had been super weak and I had to push him in in a wheelchair - he was too weak to even walk from the patient drop off area. Luckily, the waiting room was empty so we got right into triage. They found out he was a chemo patient and got a mask on him and then took his vitals - his heart rate was at 150 and his blood pressure was low. So they rushed him into a room, got him set up on IV fluids and took bloodwork. After a liter of fluid was in him and he still didn't have to use the restroom, they knew he was dehydrated and hooked up another liter - plus nausea and pain meds. And then the bloodwork came back and his platelets and white blood cells were low - the platelets were so low that ER doctor came in to get his oncologist's name to call him and let him know. He came back in and told us that Robert would need to be hospitalized because they were that low. That was a bit of a shock. It was late by the time we know that, and Robert's mom and sister kindly came the 45 minute drive to the hospital, and then Vickie went and picked up Aiden and took him home to bed and his mom stayed so she could bring me home once he was all settled in a room. That took awhile and by the time all the questions were answered and Robert was all settled in, we didn't leave until after 1am.

Getting home and realizing it was just me and Aiden was quite a shock - and our older kids were due to go to UT with their grandma in just over 24 hours. Thankfully, my aunt came down from Sedona and stayed with me and then my mom did until Robert was released from the hospital the following Wednesday morning (6 nights!). While he was in the hospital, he had a platelet transfusion to help get his platelets up (the lowest they dropped to was 13 thousand, normal being 130-400 thousand!). They also gave him lots of IV fluids and speech therapy came in and helped him with swallowing and got him to start eating ice, water and purees again (at home he had been only eating via his feeding tube). So, when he came home, he was feeling so much better, he was hydrated and even used to being somewhat independent in getting up and getting his feedings ready. Here he is ready to come home:

Round 2 started the following Tuesday. He saw the doctor first and the doctor decreased his chemo dose by 10% after the hospitalization from the first round. Round 2 seemed to go better than round 1 as far as side effects. Less nausea and feeling like he had been hit by a truck. Right before round 2 started he took a shower and came out with less hair though. But that was expected to happen eventually. After round 2 he even had a good day where he got up and played a board game with Breena and Joshua:

He was having some urinary symptoms that are often a side effect of one of the chemo drugs he is taking so the doctor has ordered him to have IV fluids every weekday to make sure he is staying hydrated and things are being flushed out as they need to. Thankfully those symptoms have gone away. The other thing is he has been dealing with swollen ankles off and on since he got home from the hospital. And he has lost so much weight! He is so skinny!

So, that's where we are now. School is about to start for the kids on Monday and Robert will be starting round 3 of chemo on Tuesday. Hopefully this does the job and knocks the rest out! They will be doing another PET scan after round 3 is over to see the inside progress.

Robert has been doing really good eating real food the last couple of days, so that is great! Two of his brothers came to visit from Utah yesterday and today and I think that really lifted his spirits - he was feeling so good today he said he might even be up to going to church tomorrow, which he hasn't done in a few weeks.

We have had so much help and support from friends and family - I can't even tell you how grateful we are. From family staying here to help, to the hundreds of prayers and good thoughts being sent for us, to people from church bringing dinner and offering to watch kids, and doing our yardwork, to the many cards that have been sent for Robert, and more! I haven't taken a picture, but I have all the cards up on the wall in our living room in front of the recliner that Robert is pretty much living in right now so he can see them. And Robert has had some amazing priesthood blessings from family and friends also. I know that God is watching out for our family - we have seen miracles so far, and we know that part of the miracle is having so many people supporting us.

So thank you, thank you everyone! If you wouldn't mind sending out more prayers for us as round 3 of chemo fast approaches, we would appreciate it.

I will try to keep everyone updated as things keep going!