Month: August 2015
We enjoyed a quiet day as a family today. The sky was clear and a gentle breeze blew through the open doors and windows. It felt so good to Jan, since he has been running extra hot the past few days. Bernadine came to visit with her sweet family, and I made a lasagna and baked a big pan of dinner rolls for everyone to feast on. Afterward some of the kids played some games in the living room while we all sat around and chatted.
Kjira built a huge puzzle at the table.
At one point Mycah asked me if I’d ever stuck the nozzle from a bicycle pump in my belly button while someone pumped it. I didn’t even have to hesitate to answer…I can honestly say I’ve never done that, AND I’ve never even thought of doing that either. Her and Emma grabbed the pump from the garage and showed me what they had discovered last night. Mycah held the pump against her belly button and Emma pumped away, and a high pitched squealing sound erupted from the belly button. It was pretty funny. Sometimes all I can do it laugh at these crazy creatures and shake my head. I guess this is what happens when you raise kids without television. They are creative in their play!
I spoke with Danny this morning and he is doing well. He is still in Indonesia but was planning on flying his passengers to Borneo tonight. After getting all necessary preparations completed, including checking out of the hotel, prepping the airplane and waiting patiently for the passengers for quite some time, they received word that the trip was cancelled.
A new week starts tomorrow. One in which Jan will have 5 more radiation sessions as well as more doctors appointments. My sweet Mom also has doctors appointments that we’ll get her to. Tomorrow evening my Aunt Liz, that came out for Daddy’s funeral, will be returning to Australia. Life is busy, and yet in some ways I feel like it’s all moving in slow motion and I am suspended and moving slowly along with it all, and there are things around me I cannot control but have part in. I so desperately want to wake from all this and find my Father and Brother in good health, but tomorrow is another day with my Dad gone and my sweet brother fighting cancer. All I can do is love completely, enjoy and cherish the beautiful moments of each day, and never forget the priceless gift that family is.
The creatures had a blast and a half spending the night at the cousins house last night. Mycah is a baby magnet. Every time she is around her younger cousins they seem to gravitate toward her and fall asleep in her arms.
Kjira came into the house this morning from being on a walk, and said that there was a racoon in a trap. I instantly had images of the poor little thing in pain, so I ran out into the yard to where she said it was so I could help it somehow. I was relieved to find he was unharmed and in a cage.
I asked the neighbors what their plans are for him, and they assured me that they never kill the raccoons they catch, but take them up into the mountains to a meadow where there is a beautiful creek, and set them free. This little guy was having a party in their vegetable garden, especially in the corn patch.
Their garden is beautiful. Giant stalks of corn stretch high toward the sky, and bright orange pumpkins are nestled among large green leaves. There is a peaceful feeling there, where things are cared for, protected and encouraged to reach their full potential.
This afternoon the house was filled with family and friends. The yard was bustling with laughing children, Gabriel and Aidan climbed trees, Emma baked, and we talked and laughed about all sorts of things. Mommy had a rough time toward the end as she thought about the many times we have had the same sort of afternoon with Daddy sitting in his big chair, smiling as he watched the grand kids play. Jan sat quietly in Daddy’s chair, resting his eyes and his mind as much as he could, and our dear friends, the Stahn family, came by with delicious food to share with us.
Especially at this point in my life, I am grateful for progress – no matter how minute. It’s often the small and simple miracles that take place so often in our every day lives that we overlook and call luck, that we should recognize and feel gratitude for. Too often we feel entitled and take for granted those priceless gifts that when lost, cause regret and sadness. It is in those humble moments that we will feel humility to the core, and perhaps for the first times in our lives, feel truly grateful.
Another one down
Idaho is gorgeous in the mornings. The air is cool and fresh, the sky is wide and blue, and barn swallows fly over the canals like B52 bombers. Harvest has been moving forward in full force, with combines and John Deer tractors gathering, chopping and baling in a cloud of dust all day, leaving giant one ton bales scattered peacefully like sleeping babies in the fields at night. Mycah and I got some exercise this morning surrounded by this tranquil scene. The air is so dry and thin at this altitude, compared to the humid sea level where we live, and exercising tends to leave us winded and hot. Mycah saw an opportunity to cool off in the sprinklers of a farmers field, and embraced it.
Jan’s radiation appointment number 4 went well today. Only 6 more to go. Mommy joined us and was amazed to see how it all works. The staff were so sweet to explain it all to her. During today’s session he said that in his head he could see more purple and white lights, this time more toward the front of his face rather than off to the side. The ammonia smell still accompanies each treatment.
Jan slept 90% of the day today. His nausea and dizziness have continued and his eye sight seems to be worsening a little each day. We keep praying that he will find relief from that.
The creatures are spending time with their cousins this evening, and went to the school football game. Bernadine sent me these photos…
In the mean time those of us left here at the house, did what we seem to be enjoy doing each evening now – laying on the grass outside in the cool evening air.
There’s something so peaceful about lying on the coolness of the lawn out in the country, where no city life can be heard, but only the sound of birds in the trees and horses in the fields.
I am so grateful for a healthy body, and for my eyesight with which I can see the breathtaking beauty of the world around us.
Home from the hospital
This morning we went in to the hospital to check on Mommy, and she looked so beautiful. Sometimes I look at her and am so amazed at how incredibly beautiful she is, how smooth and soft her skin is, and what a dainty little lady she’s always been. How on earth did she end up with a child like me…a big boned tomboy who’s always barefoot, still climbs trees and can’t pass up a dare. She was discharged from the hospital about midday, and is doing splendidly.
Jan and I went in for his radiation appointment.
The staff always greet us big smiles and send us on our way with big hugs. What a great group of people. 3 down 7 to go!!!
Today Jan has been especially nauseous and dizzy. He has slept a lot more and just really felt out of it. He’s most comfortable with his eyes closed because his vision is bothering him more and more. He continues to be so sweet and loving when I go to him with the next handful of meds and shot in hand. He lays quietly while I medicate him and then thanks me and tells me he loves me when I’m done. What a sweet Angel he is.
I’ve really missed Danny today, and was so excited to receive a phone call from him around 5pm from Hong Kong. His travels had gone smoothly thus far, and he still had another 4 or 5 hour flight to go to Indonesia. Once there he will be 13 hours ahead of me. Last night when I got into bed I found a note he had written for me. Such a beautiful, tender note. I am so grateful for him.
This evening has been so fun. It was a wonderful cool temperature outside, so we all went out and lay on the grass and chatted and laughed for a while.
The creatures played on the swing as the sun lowered in the sky.
And then my wonderful nephew, Cody, came over and we all played a game of soccer while Jan and Mommy watched.
At one point Jonathan and I collided in mid air while Kjira scored us another point. Aidan weaved in and out of our legs and Emma rugby tackled while Jude tried to play hacky sack with the ball. Hunter towered over everyone as he ran and Mycah is so athletic and strong and is always ready to take anyone down. What a great time we had.
Now Jan and Mommy are tucked into bed, the creatures are all in the living room talking quietly and laughing together and I’m ready to slip beneath the covers and get some sleep.
I am so grateful for a wonderful day of life. We are so blessed and have so much to be grateful for. Life is good.
2 down, 8 to go!!!
It’s been another eventful day in Idaho!
Our morning began with us hurrying over to the hospital, to be with Mommy who was admitted last night. Bernadine had been so sweet to spend the night with her, and I’m so grateful she did, because this morning mommy had another of her episodes where she couldn’t breathe. Bernadine was there to call the nurse and get things under control again. The ER Doc decided that the CT scan done last night, showed that she had had a stroke.
We spent the day up in her room with her, talking, joking and entertaining each other while mommy slept on and off.
When it was time, Danny and I took Jan in for his 2nd radiation treatment, and all went well.
The door leading back into where radiation is performed, is about a foot thick.
The techs had Jan lie down on his fancy super hero bed while they placed his ninja mask over his face, then bolted it down to the table so he couldn’t move a millimeter.
We all went and stood in another room and watched on a couple computers as the huge satellite looking machine orbited his head.
It sends it’s fancy nonsense into his entire head, except for face. Before we knew it, it was over and we went back in and helped Jan stand up and we said our thank you and good bye’s till tomorrow.
So far Jan has felt no side effects at all. He was a little nauseous today, but we aren’t certain that it’s from radiation. It could simply be from the brain tumors. He has continued to be dizzy and has difficulty concentrating.
After Jan’s appointment we drove back to Firth so Danny could finish packing and gather his bags, and I left Jan home to rest while I drove Danny to the airport. After being home for 3 weeks, he is leaving once again for another 30 day trip. It was tough for Danny to say goodbye to his brother, who he loves so much.
These two became close right from the start, and Danny hates to leave especially at this time when Jan is ill and Mommy is in the hospital.
We are going to miss him so much.
While we were busy with all we had to do today, the girls spent their time with one of my dearest friends, ZoAnn. They had an absolute blast and a half with her and her beautiful family. The boys went and hung out with their cousin, Jessica, and loved every second with her too. I am so grateful for such loving friends and family.
I spent until 8:30pm with mommy at the hospital, then needed to come home so I could give Jan his next dose of oral meds and a shot, and when I left the doctor came in to see mommy and told her that after looking thoroughly at her CT scan and MRI, he believes she did not suffer from a stroke. He believes she had a terrible reaction to the meds she was given in the ER, as well as to the anesthesia, and that it was good that she was brought in because the way her breathing was, was life threatening. We are so grateful that she is okay, and will make sure that when she comes home she is able to rest and take time to regroup and feel strong again after all she’s been through. Our mother is our precious angel, and I have no doubt that Daddy has been by her side every second.
One more thing…
This evening I sit writing from the Emergency Room.
Our morning began in what has become a normal fashion. I woke for Jan’s 5am oral meds and shot and went in to give him kisses on his beautiful bald head to wake him up – but he was awake already and had been since 3am. We chatted quietly for a minute and then I gave him a love tap, told him how much I love him and went back out to Danny.
Yesterday we heard back on Mommy’s MRI and they told her she has torn her newly repaired rotator cuff clear across and will be having surgery on Thursday again. About an hour after medicating Jan, I received a frantic phone call from Mommy, saying that her Ortho doctor had called saying he had a cancellation and wanted to do her surgery right away. I went in to her as she scurried around gathering up what she needed, and in a wild whirlwind, her and Aunty Liz were out the door and down the road.
Danny and i took Jan to his return Oncology appointment, where Dr Adams was encouraging about Jan’s choice to do radiation, and spoke to us about what to expect. We then went over to the Radiology Oncology Office where Jan met the team that would be working with him, and they took him back for his session. They told us that since he is on the steroid for shrinking swelling in the brain, he would probably not have the headaches that many radiation patients have. They said he may experience increased fatigue, but otherwise nothing at all. Jan was gone for about 20 minutes, and when I asked him what he’d experienced, he said that when they were performing the treatment, his eyes were closed, yet he saw purple and white lights and could smell ammonia.
We headed home and upon arriving, saw this in the driveway.
Never a good sight. Two of my parents neighbors were at the front door and I asked what was going on, and they said Mommy was having difficulty breathing. I went in to her, and she was gasping for breath. Bernadine had the fan on her and the EMS crew were working on her. I knelt on the bed behind her and kissed her face, told her I loved her and that everything was going to be okay. Bernadine said that when she came out of surgery she had had a similar episode, but after arriving home it had worsened. Just as she began breathing a little easier, it became labored once again, and it was decided that she should be brought by ambulance in to the hospital.
So, here we are. They are doing a CT scan on her to check for blood clots, and have given her Benadryl to sleep and treat any possible allergies to meds from surgery.
And so it continues…the ever eventful adventures of our tribe.
A new super hero
When we spent the night with Denise and Shad in Utah a couple nights ago, we had so much fun playing with their beautiful little kittens. I had taken photos of one of them who had taken a liking to Jonathan’s hat. So darn cute.
When we got home and settled yesterday, the creatures walked with Danny, Mommy and I to Daddy’s grave so we could show them where he’s buried. They picked flowers along the way to place.
It was good to be there with them and it helped them find some closure. They love their Oupa so much and expressed how they felt him so close in the days they were on the boat while Danny and I were gone.
Our beautiful niece, Jessica, stopped by with her wonderful husband and little angel, Olivia. Mycah is the baby whisperer, and sat with Olivia asleep in her arms for some time. Periodically she’d look at me and say, ‘she so cute!’ (which of course was really cute for me to hear and see.) I find my creatures to be so freaking adorable even now when they are bigger than I am.
It was hilarious to watch them in the grocery store today. They are so used to tiny, dirty Panamanian grocery stores.
They walked around with huge eyes and couldn’t believe how huge the grocery store was. Jude walked up to the bread section and exclaimed, ‘Look at he huge selection of breads, why is it necessary to have such a huge selection?’ Mycah loves pickles and has missed them.
She stood in front of the pickle section after saying all the fruit looked like plastic, and was absolutely dumbfounded. After she’d been there a while I asked her what she’s thinking, and she just stared at the bottles in awe and said, ‘there are just so many mom. I don’t know which to pick.’ She came away with two jars with a huge smile on her face.
Jan had lots of time to think this weekend as he spent precious time with his children. After experiencing 3 days of rapidly declining in motor skills, dizziness and confusion, he has decided to try radiation. This morning first thing I called the Radiation Oncologists office and scheduled his appointment. They told us to be in at 10am to do the prep work for radiation. I stayed with him the entire time and was fascinated with the process.
First they lay him down on the scan table and brought out a hard plastic contraption. They took the plastic screen and placed it in a machine that heats it up and melts the plastic while he lay with super hero laser beams across his face.
After the cool plastic contraption had heated up they placed it over his face and pulled it down and bolted it onto the table he was laying on.
They formed it around his nose and face so it fit tightly and we waited a few minutes for it to harden. At that point they sent him in to the Avengers Super Hero making machine and laser beamed his fancy new powers into him.
After that they pulled his new sexy mask off his face and he sat up with big bulging muscles and a Russian accent….
Now we need to work on the rest of his outfit. He won’t have a cape though, because it’s too easy for them to get caught in jet engines when he’s flying.
As I was there with Jan, I felt grateful for this treatment that is available, but so sad that he has to go through this, especially at this time in our lives when we just lost our Dad. Then I had a wake up call. We started talking with the tech that was working with Jan in the photo above, and she told us that she understands what we are going through. She lost her father in October and her mother was diagnosed with cancer the following month. Her brother died of muscular dystrophy the following month, her mother died in February, her dog the next week, and her sister the next month. I asked if she had any family left and she said she has one sister, who has leukemia. All of a sudden, my trials seemed bearable, and I was once again filled with immense gratitude.
Life is so precious and we all have so much to be grateful for. I am a blessed woman.
Jan begins radiation at 3pm tomorrow. I pray he responds well to it.
Yesterday morning Jan, Danny and I drove to Utah and picked our sweet little creature, Aundrea, up. It is wonderful to be reunite with her. We ran a few errands, including picking up our excursion. We met up with some of Jan’s friends so he could spend some time catching up with them. We also met with Jared, Jan’s second oldest son, and his beautiful soon to be mother -in-law. While there, Aundrea found a car perfect for her size.
We went into a store called Pirate O’s, where they have all sorts of candy and drinks from many countries. We found these crazy flavored drinks, but decided against trying them out.
A few months ago Aidan tried the bacon flavor and we decided that it was best left in the bottle!
We then met with more of Jan’s sweet kids, Steffan, his wife Kasee and Braydon. What beautiful people they are.
Finally it was time to go to the airport to get our Panama Creatures. It was so great to hug and kiss them. It feels like it’s been a lot longer than 12 days since I’ve seen them. Their travels went really smoothly. I’m so proud of them for their intelligence, confidence and independence.
We drove to Bluffdale to spend the night with our sister and brother in law, Denise and Shad. The creatures kept commenting on how large the rooms in their home are. They are so used to smaller spaces and didn’t quite know what to do with themselves.
Jan had a rough day yesterday. His balance was difficult to keep and his legs failed him several times. He felt dizzy and confused like he had been drugged. I am so grateful for another day with him. I love him so much and cannot imagine a more wonderful brother.
A beautiful day
Early hours of the morning when it was still dark outside, I went in to check on Jan, kissed his head and pulled the covers up over him, then went and stood outside and gazed up at the star filled sky. It was spectacular. The stars were displayed beautifully against a rich dark blue sky. Orion stood proudly over me and the seven sisters huddled in their gossiping group, while the big dipper arched, scooping up the atmosphere. I breathed deep and told daddy I love him, then returned to my sleeping Sweetheart in our warm bed.
This morning our dear friend, Debbie, came over and helped Jan fill out paperwork, while Mommy was hit with a cleaning bug and scrubbed out the fridge and pantry. Later we took her into town for an MRI on her shoulder. Three months ago she had her rotator cuff operated on and it is still so weak and causes her discomfort. Her doctor wanted to make sure that when she caught Daddy to stop him from falling on several occasions, she didn’t mess something up inside again.
The middle image shows a scan of her shoulder, and the third image shows how they stuck a huge needle deep inside her shoulder, and injected dye in preparation for the MRI. I felt so bad for her because it was so painful. We should have the results early next week.
My nephew, Jacob, got married in Oregon today.
He and his beautiful bride, Michelle, were surrounded by family and friends to celebrate and we were there in spirit. Bernadine (my sister), has been loving her time by the ocean and among the huge trees.
Our sister, Lisa, had her neck fused today.
We visited with her up at the hospital and decided that we’d all put on hospital gowns and go streaking through the halls just for fun….but we didn’t. Next time.
Our ex sister in law, Teri, has been kind enough to organize a bike rally on September 12th in honor of my brother, to raise money for his medical costs. All riders will pay a $10 entry fee, and she’s also set up an account with Cypress Credit Union under the name of Jannie Nel, for donations. 280830 is the account number, and their phone number is 801 260 7600 if you’re interested. The facebook page is ‘Bike Rally & Fundraiser for Jannie Nel.’
Jan has had so many people reach out to him with love and concern, some that he hasn’t heard from for some time, as well as those he regularly rubs shoulders with. He is a very loved man – but I knew that.
We are so excited for tomorrow. Our creatures will be flying from Panama to join us here in Idaho. They have been very busy prepping the boat, scrubbing, stowing and eating all perishables! They will leave Red Frog Marina on the water taxi early in the morning for the airport, and will eventually arrive in Salt Lake City late tomorrow night. We have missed them so much and can’t wait to see them. Jan, Danny and I will travel to Salt Lake in the morning and pick up the Harley and the Excursion and use them for transportation here in Idaho. As well as try to sell them.
I am so grateful for another beautiful day of life. Another day in which I could love, serve and learn.
Time to rest
This morning we ran into town to meet with Dr Liljenquist, Jan’s primary doctor. He reviewed all the info we have gathered over the last few days and spoke about what options Jan has. We discussed meds and what the plan would be if Jan had treatment as well as if he did not. We spoke about how if he chooses no treatment, we’d start hospice immediately. So many things to consider, and such a huge decision to make…
Jan was supposed to have the PET scan this afternoon and have the preliminary work done in preparation for radiation, but decided that he’d like the weekend to think things through. It has been the longest week of our lives, and it’s not even over yet! It’s time to rest and take a deep breath and listen for insight and understanding.
As we drove home I looked out at the golden fields of freshly harvested wheat and barley and felt a peace fill me, and I knew that no matter what the next few weeks bring, everything is going to be ok. There is beauty and learning everywhere, and all those lessons I learn now through this heartbreaking journey with Jan, I will be able to use to help others. In the end our love and appreciation for each other will have grown, and our eternal bonds will be stronger still. I am so grateful.