Complicated

On Thursday, the 5th of July, my dad had both a bone marrow aspiration and lumbar puncture.

He had an appointment today to go over results. The leukemia in his bone marrow remains about the same (less than 1% leukemia). The lumbar puncture results showed leukemia present in my dad’s cerebrospinal fluid.  This is a new development, as my dad has never had Leukemia in his spinal fluid. The doctor says, this makes things a little complicated.

After his appointment today at SCCA he went directly to UW Medical for another lumbar puncture (take out spinal fluid and replace with chemo). Now dad will take two new oral chemo pills and recieve lumbar punctures twice a week.

My dad is meeting with a neurosurgeon on Wednesday. He will have a cat scan, in preparation for the possibility that dad has surgery to put in an Ommaya Reservoir. This device will help facilitate the removal of spinal fluid and insertion of chemo. The Ommaya Resevoir is like a port in your head that would eliminate the need for lumbar puncture (long needle to the back).

Dad is feeling a mentally and physically defeated but he promises that he is going to keep showing up!

This photo is from last week when my dad’s company Matrix Service participated in Relay for Life. We are thankful for the people in my dad’s life who keep showing up too! 

This photo is from last week when my dad’s company Matrix Service participated in Relay for Life. We are thankful for the people in my dad’s life who keep showing up too! 

New Results, Same Results

Results are in and dad still has Leukemia. The doctor says the percentage of cancer cells in his bone marrow are the same as last month. This isn't bad news. However, my dad's doctor is looking ahead at other treatment options. Dad is feeling really great and we pray that this third round of Blinatumomab knocks the Leukemia out.

We know medically that we may be running out of treatment options but ultimately, God is the all-knowing and trust that he knows what is best. We will trust in Him.

Dad heads back to UW Medical for round three of Blinatumomab on Saturday, June 2nd.

Thank you for your prayers!

That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.
— 2 Corinthians 4:16-18
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May 9th, today is my Aunt Joni's birthday which gives us a quick 24 hours to show her some extra appreciation and love.

If you know her, you know she is fun AND funny. She is full of life and wisdom and though she has experienced pain and suffering in her many years, she carries on with a joy, hope and a faith we all admire.

Most of all, she someone with a generous heart that we have always known and seen in action, but really felt this summer when she became my dad's bone marrow/stem cell donor. Her and my dad have always shared a strong bond, but now more than that... they share the same DNA.

Happy Birthday Aunt Joni! We love you!

Quick Dad Update: Round two of Blinatumomab is going really well. No cancer in the blood. Dad will have another bone marrow aspiration at the end of the month to see if their is any cancer left hiding in there (last we checked there was 0.12% left).

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Today's Update

Good but not great.

The bone marrow aspiration results showed 0.12% Leukemia.

Perhaps we were being greedy in our expectations of zero cancer. However, we are pleased that the cancer went down from 30% to 0.12%.

This qualifies dad for another round of Blinatumomab which will begin again on Saturday of this week. This will start in the hospital for a few days and then it's on to home infusion 24/7 in Bellingham.

Dad has been feeling really good and his spirits are high. We are ready to keep on with the fight!

Thanks for your continued care and prayers! 

Home

It's hard to believe it has been a month since I last posted. It's even harder to believe that my Dad has just passed the year mark of fighting Leukemia.

Last I wrote, we were a bit worried (to say the least) because my dad was experiencing some serious side affects of the drug he is taking (Blinatumomab). He was able to work through the cytokine storms.

On the evening of March 18th, my mom and dad were able to return to Bellingham and continue treatment from home. My dad relied on my mom for all his nursing needs. From flushing lines and hooking up new bags, to checking blood pressure and keeping my dad's surroundings clean as can be. My mom continues to be the gracious and giving person she is.

Dad finished his first round of Blinatumomab on Friday, April 6, That's 28 consecutive days of 24/7 infusions... can you believe that? I still can't... I am happy to report that Dad is feeling well without the Blinotumomab!

He will have a bone marrow aspiration on Friday, April 13 and on Tuesday, April 17, dad has a meeting with the doctor to go over results.

Currently, there is no indication of Leukemia in my Dad's blood. The bone marrow aspiration will tell us if the drug was able to get the Leukemia out of his bone marrow. Obviously, we hope there is no detectable Leukemia cells and dad can continue this treatment process. We will keep you posted.

A sweet picture of my dad, sawyer and mom from Easter, right before praying.

Hi all,

My dad had a bone marrow aspiration on Wednesday and his results showed 30% Leukemia cells in his bone marrow. Not great news but nonetheless, we moved forward with the next treatment option.

On Friday night, dad started Blinatumomab.  

Things seemed to be going okay on Saturday. Although, today was a bit of a different story. What started with a slight fever (that eventually broke) and some forgetfulness on my dad’s end became much more.

When Matt and I arrived with dinner at 6, dad had very bad chills and wasn’t talking much. His eyes made me feel like something wasn’t right. I offered to help him eat his dinner and he said yes. When I asked if he wanted more to eat, he was only giving me nods with less and less talking.  

It got to the point where he couldn’t answer simple questions. He was very confused.  

It didn’t take long for nurses and the doctor to start making orders for anti-seizure (preventative) medication and steroids (help calm the Blinatumomab). Unable to move his own body, a lift moved my dad from his chair to the hospital bed and they wheeled him to have a CT scan done on his head. This was to capture what his brain currently looks like (ensure there is no bleeding).

This side affect that my dad is experiencing is called a cytokine storm. The Bliatumomab is working very aggressively to kill all of the leukemia cells and my dad’s body is in shock to say the least. On top of his chills and fever, the neurons in his brain just aren’t functioning like they should.

As of 9pm tonight my dad’s started to be more awake and remember answers to simple questions. He is still a bit confused but was able to to remember who was in the room, our names and shared that his favorite color was blue, but not like scrubs blue, like denim blue. We attribute this increased alertness and brain functioning to the steroid that they gave my dad to help calm the Blinatumomab a bit.

Extra precautions have been made, like seizure mats around his bed to help protect my dad in the case of a seizure. He can’t get out of his bed without the help of 2 nurses. His seemed to be frustrated with why he can’t do all of these things on his own.

The doctor has decided to continue Blinatumomab with the thought that we want to figure out a way to manage my dad’s side affects without jumping ship on the drug all together.

We know there is still hope for remission.

Thank your for your constant prayers. We need them.

 

Best,

Jessica + family  

 

Mom and Dad were in such good spirits on the phone today. They broke out of the hospital earlier this evening after 48 hours of no fever! He will continue with outpatient antibiotic infusions to treat his blood infection.

On Tuesday, Dad will have another bone marrow aspiration to make sure those pesky Leukemia cells are staying out of his bone marrow. Still no leukemia in the blood!

On a non-cancer note, my dad gets a kick out of this cover of ACDC’s Thunderstruck and wanted to share it with you all. I’m pretty sure my family watches this video everytime we are together. We hope you enjoy it as much as he does!

Nadir

On Friday at 11pm, dad ran up a fever which meant heading straight to the hospital. After a weekend of tests while at the hospital, they were able to identify a blood infection called, Streptococcus mitis. 

I truly know nothing about this infection other than what my dad shared with me on the phone tonight which is that the bacteria is something that my dad gave to himself as a result of being neutropenic (no immune system). My dad will not be released from the hospital until he goes 48 hours without a fever. He still has a fever and we are hoping for it to break soon so that we can start the 48 hour countdown.

Dad spent some time this weekend feeling really down about being back in the hospital and feeling so weak, tired and cold. A nurse asked him how many days it has been since he had chemo to which my dad responded, "9 days." She encouraged my dad by saying, "Oh you are at Nadir." We remembered this means dad's blood cell count is at the lowest it will get as a side effect of his last chemo treatment. "It can only get better from here!" she added.

We love these bits of encouragement! Dad's Leukemia cells remain at 0 in his blood. 

“Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go." Joshua 1:9

Encouraged

Wonderful news yesterday: tests show zero detectable Leukemia cells in dad’s blood!

Dad told his doctor that he is buoyed by these results and his doctor confirmed, “you should be!”

My family continues to be encouraged by texts and messages of people praying for my dad and mom. 

This week mom and dad met a women also getting treated at UW. They stopped to chat. Both this woman and my dad shared briefly about their Leukemia journey. Though this particular woman doesn’t have the same leukemia as my dad she shared about her friend who had ALL. Her friend spent 16 days in ICU and was told on two ocassions that she had 2 weeks left to live. “...But that was 6 years ago.” she added. Hearing this story reaffirms us that this journey is full of ups and downs. We feel hope is still here for us.

With no leukemia in the blood it is looking more likely my dad will get to move forward with the 28 day infusion (Blinatumomab). This is really positive news.

My dear friend from college, (diagnosed with ALL around the same time as my dad) texted after the last post to say that she also has had Blinatumomab. She had very positive things to say about the drug. She continues to do well and is leukemia free! More encouragement for us!

Today we are grateful for God for answered prayers and the strength to keep showing up!

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Not Alone

Tests show that the current chemo (Inotuzumab) dad has been receiving for the past two weeks is not working. The blasts in my dad's blood are trending up, soooo yet another change and another attempt to beat this leukemia back into remission.

For the next protocol dad will be admitted into the hospital on Monday. He will be at UW Medical (the same floor where he was first diagnosed with Leukemia - 10 months ago). Dad will be there 4 to 5 days for a new chemo treatment. When he is released, he will have to live in Seattle again for a couple weeks in order to receive blood and platelet transfusions. He will be considered neutropenic, meaning he will be VERY susceptible to catching a virus which his body would not be able to fight.

If this chemo does its job dad will be able to receive Blinatumomab, a 28 day continuous infusion. This will be 10 days spent in the hospital for continuous infusions and 18 days home (Bellingham) with an infusion pack in tow which my mom will infuse for him.

Mom reports that Dad has been feeling pretty good, just very fatigued!

Last night, my parents opened up the front door to the entire front lawn full of people holding candles, singing Amazing Grace. My parent's neighbors/friends Robin and Craig had rallied the entire neighborhood to sing and pray for my dad. A lot of these neighbors, my parents only know from walking the dog around the block each day. They come from all backgrounds and faiths, last night they came together for my dad. My mom's words were, "It was very surreal and uplifting!"

It was too cold to be standing outside for long so in true dad fashion, dad invited them all into my parent's living room. About 30 of the neighbors came in, they read from Romans, sang, prayed and visited some more. God was there.

I can't not cry every time I reread that story that my mom shared with me. We are not alone. 

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