By Small and Simple Things

I started a family journal a when Megan and Michael were little to record all the cute things they did. I've been trying to decide if I should record what has been happening on my private journal blog or here. I think I'll do it here so that someday the kids can look back on this chapter in our family history and it will help make more sense to them. I just have to tell them that I came home after mid-night, it's now 5:00 in the morning, Peter isn't sleeping well and I'm typing this one handed as I feed him. So kids, don't be as picky with me as I am with your school work. :) I've also decided that it's okay to keep this blog public. I'll take all the prayers we can get.

Where to start? About two years ago, Nathan started having funny things happen to him. Every few weeks he would have amazing stomach cramps. They got worse and became debilitating. Finally, in the middle of the night I took him to the ER. They couldn't find anything and told him to make an appointment with our primary care physician. Although we now know the imaging they took that night showed a slightly swollen spleen and lymph nodes, they were not abnormal enough to trigger alarm. Then the problem stopped.

Later, Nate started having nights every few weeks where he would violently vomit all night. He went to see the doctor and a specialist. He had an endoscopy done (where the doctor put a tube with a camera down his throat.) The doctor couldn't find anything. Then the problem stopped.

Life went back to normal. Nate stopped eating sweets and lost a lot of weight. A little more than he had planned, but he was happy with it. He went on a fifty mile hike with the scouts and then twenty miles in one day with Megan, Michael, Emma and Merian. It seemed like he was so healthy.

This fall strange things started to happen. He would wake up with sore joints. He said it felt like his hands had been clinched all night. He started to feel nauseated in the evenings and then all the time. He found some bumps on the back or his head. He went into see the doctor and met with the nurse practitioner a few times. They did some blood test and found some things a little off, but nothing alarming. We were getting frustrated and not sure what to do next. Dad had no energy. He would go to bed early. He was so wiped out. He contributed it to his new work schedule, but his body wasn't getting used to it. Other strange symptoms were starting to appear. He was looking so skinny to me and not well at all. But he kept trudging on. Waking up at 5:30 and doing projects around the house.

Then two weeks ago our family got sick, but Nate did not get better. While he had been too skinny before, now his abdomen was swollen, hard and sore. Mike stopped by Friday afternoon to take him to urgent care, but Nate called his doctor to ask if these things could be side effects from the thyroid medication he had been taking for a week because of his blood results. He was told to stop taking them and make an appointment on Monday. I decided that if he didn't get a doctors appointment on Monday I was taking him into the ER.

Monday we went to the doctors. When we left the house the person being interviewed was talking about cancer. I didn't want to think about that so I turned off the radio. At the appointment the nurse practitioner found new swollen lymph nodes. She ordered more lab work and some imaging to be done. Luckily the imaging was able to be scheduled right away. We did that, the blood work, filled a prescription for an antibiotic, just in case it was some sort of infection, and then went to Quiznos. I was excited to see Nate was interested in food, but he only ate half of his sandwich even though he loves Quiznos and hadn't been there for years and hadn't eaten all week. Things were definitely wrong! I called my mom who had been babysitting and told her we were coming home. We had just got on the freeway when our doctor called and told Nate to go straight to the ER. He told Nate he had cancer. I was glad I had been driving all day, but not really glad I was driving a 15 passenger van during coming home traffic during this time.

We went to the ER and Nathan was treated for high calcium. It was confusing for us because Nathan seemed to think the doctor told him to let the doctors at the hospital come to their own diagnosis. On one hand I thought that was a good idea to have a second opinion, on the other, I wanted to get the ball rolling and get some answers. I can't describe the feelings and thoughts we were facing.

I read on the internet about the Sandy Hook conspiracy theories and the accusations that Emilee's dad was an actor because he was laughing one minute and crying the next. Mercifully, that is how our brains work. We can't take it all in at once. Our brains go through cycles of thought so we can process it a little at a time. And that's what was happening with us.

Our doctor called Bishop Kreutz and so he and Brother Howard showed up and gave us both blessings. They both mentioned miracles in their blessings. The spirit was very strong.

Nate was admitted to the hospital and taken upstairs. We met our awesome nurses and he was looking so much better since he was more hydrated my his IV so I went home. I knew Peter would not sleep well there and I knew the next few days were going to be long. Nate looked so tired and he has a gift for sleeping so I knew he would be okay. I went set the alarm for 6:30, and went to bed. The last time I looked at the clock it was 12:30. The next thing I knew the phone was ringing, but I was confused and thought it was the alarm. I was amazed that Peter hadn't woken up all night. I ran for the alarm so he wouldn't wake up and then realized it was the phone. After I answered I told Nate the alarm didn't go off for some reason. He told me that was because it was 1 o'clock in the morning. I'm not sure why I wrote all that but I thought it was funny. Then he told me the hospitalist had been in and told him he had lymphoma, that he would have chemotherapy and bone marrow transplants...and that's it. SERIOUSLY!!! He WOKE YOU UP to tell you you had cancer and then left? He's not even our hospitalist, just the night shift guy. I guess he wanted to be the first to make the diagnosis. He didn't know that our doctor had already beaten him to it.

The next morning it was a little confusing because our hospitalist wasn't ready to commit to a diagnosis. I like the way she handled things much better. Still, if it was cancer I wanted to get it diagnosed as to what type so I could start researching and we could get treatment started. That day we talked with Dr. Arif (a-reef). If I could take him home, I would. He is the best doctor. Loving, optimistic, caring. I'm happier and feel better when he comes to see us. Unfortunately he is a naphrotologist and not an oncologist. We learned that Nathan's calcium levels were critically high and that he had acute kidney failure. We were hoping that with the use of Calcitone and IV fluids we could get the levels down and jump start the kidneys and it wouldn't be chronic kidney failure. It was slow at first, but yesterday his ionized calcium made some real progress! In my research I found that elevated calcium could be caused by lymphoma. Except for the sweating (which is a lymphoma symptom), all the other symptoms were coming from the calcium. I don't remember much more of what happened that day except Nathan was looking so much better now that he wasn't dehydrated. Dr. Arif is my hero. He said he would push for a biopsy to be done in the hospital. Otherwise we could be waiting weeks for an appointment and then more for a diagnosis.

The next day was not so great. It was a really hard one on Nate. He was very sick. The good news is we were finally talking to a oncologist. He ordered a bone, a bone marrow, and a lymph node biopsy. Hilary Kreutz and Natalie Howard came to visit me. They brought me lunch and diapers and wipes which turned out to be great. We were there for a few days and it was nice not to pack more in everyday.

It was a tough day, but yesterday Nathan was looking so much better. We were able to talk together and he even complained about not being able to eat since he was going to have another surgery. He had a medport put in. Now he will be ready to receive chemotherapy. His nurse, Paul has worked in oncology, is LDS and is into scouting so they've been able to compare 50 mile hikes. So many tender mercies along the way.

Kim's sister-in-law, Kylee, came to talk to us after her shift. She brought us so much information. She was amazing. She is due to have a baby any day and had just worked a 12 hour shift. Yet she was so energetic and happy to help. Nurses are amazing people.

I got Nate to sleep and then waited for an hour for my keys from security. They were dealing with a life line helicopter I didn't mind waiting. I was glad it wasn't us in that helicopter. That was the first time I had used the valet service and was beginning to question the wisdom in this. However, my mom was right. They did walk me out to my car and at 11:30, that's always nice.

Last night I took the kids to see Joseph and the Technicolor Dream Coat. I know we should be saving the money but I also know then next months are going to be hard on our family and I wanted to do something fun before I told then. Eliza wanted to sit by me. I had Erin hold Peter so I could hold Norah and put my other arm around Eliza. Eliza would say the funniest things about the play in her cute little spunky voice. She told me how Potopher really liked Joseph, but his wife was mean and lied. She said, "come and lie with\me." When Joseph went to Egypt she said, "Ohhh, so Egypty!" She also told me we shouldn't bow to anyone but Heavenly Father and Jesus after she saw the cast bow to the Pharaoh.

I woke up the next morning at 5:00 and decided to get ready to tell the kids. I made a power point and an anchor chart. I got ready for the day and then Megan and I started breakfast. We had been out late the night before so I let the kids sleep in.

After we were ready for the day we all sat down in the family room. I was glad my mom had showed up and I asked her to say a morning prayer. She held Peter for me and I was able to hug Norah the whole time. I showed the kids a slide of white blood cells and asked them if they remembered what white blood cells do. There was another slide of a cartoon of a white blood cell that looked like a Viking warrior. Then I asked the kids if they remembered how cells reproduced and Mike told me by dividing. I explained that to the little kids and then told them that somehow some of Dad's white blood cells went ballistic (Megan said mutant; that's a much more accurate choice of word) and decided not to die after producing a new cell. Then of course, the new ones had that same DNA and so the problem just multiplied. I told them when this happens it is called cancer. They I looked at Megan and she was crying, so I cried too. But I reassured them this was a good cancer.

I told them that fighting cancer was like fighting a war. I told them that Dad is a tough fighter. I reminded them that like in the Molly American Girl books while the Dads were off fighting, the families were helping at home. I showed them posters from WW2 that encouraged people to be optimistic and reminded them of things they can do to help win the war. I told them about when I'm having a hard time I like to write down a scripture or a joke or a hymn and hang it up for me to constantly be reminded of it. I showed them my poster and explained what we can do to help dad get better. We talked about washing hands and other things so that Nate won't get sick. We talked about keeping the house quiet so he can rest and we talked about keeping the spirit in our home by keeping up with FHE, scripture study, speaking lovingly to one another, etc. Grandma Johnson said a prayer and then they made their own signs to hand up around the house. Eliza's is 2"x1". It says "wash your hands." Merian's says "I'm so hopeful I could tear bend." Michael's has Uncle Sam with a 3D hand pointing out. "I want you to help Dad get better." Emma's has a cute Rosie the Riviter. I think Megan was asking the Grandma's questions instead.

Nathan came home last night and we have an appointment with an oncologist on Monday. We will find out the results and discuss treatment. Let the fun begin.

On September 20th we welcomed Peter into our home. We are so glad he is here and everyone loves him so much.

I wrote the following in my journal very late the night after he was born. It's brief, but it explains the kids reactions when they came to visit Peter for the first time.

"The kids we so excited to see our new baby. Michael was the first to hold him and held him at least twice. Megan and Eliza looked at him with pure joy. Derek asked how we knew if he was really a boy and wanted to check it out for himself. Norah was a sleep the first time she came, but when Nate brought the kids the next day she didn't want to give up her turn holding him and she started doing this little piggy when she saw his feet." I wish I could remember exactly what she said. Something like "It's a girl." When I explained Peter was a boy she looked thoughtful and said something like, "It's not a girl, she's a boy."

Norah has been a wonderful big sister. Michael was the first one to hold Peter when we brought him home. Norah said, "be careful with him, he's my baby." She told Grandma Johnson the same thing while Norah and I walked upstairs to give her a bath. She brings diapers and wipes without me having to ask when ever she finds out he needs a diaper change. She warns me each time not to cover up his belly button.

When we first brought Peter home everybody was taking turns holding him when he needed a brake to eat. We mentioned that Peter only drank milk. Norah brought over two GREEN cups filled with milk. When Emma asked what that was for she answered, "we are thirsty." When Norah explained "we" was her and Peter, Emma explained that Peter couldn't drink out of a cup. Then Norah asked, "he need a green top?" I love that she was willing to share her loved green cups and tops with him. Then, while she watched him eat, she thought I was feeding him with my elbow. Every time I say Peter needs to eat, she corrects me and tells me he needs to drink.

Eliza sings to him all the time and I have a hard time keeping her away from him while he sleeps.

Michael and Derek love having another boy. They've asked when he can move into their room and Michael has taken him up there to show him where he will be in a couple of years. (I don't know how they will fit!)

We are so glad he is here and part of our family. He's right where he belongs and he will make a great Johnson.