Dear friends and family,

It has been quite an overwhelming week, and it feels like we are still trying to get our heads and our hearts around everything. The following update contains a lot, so if you are short on time, feel free to skip to the “To summarize” section at the end:

Joel’s first appointment this week was on Tuesday with his original hematologist/oncologist:

• He went over his myelofibrosis symptoms that are causing his symptoms: his extensive fibrotic (scarred) tissue in his bone marrow (which prevented them from getting liquid marrow in his biopsy), his enlarged spleen and liver (which cause his abdominal pain), the presence of immature blood cells in his blood and his low red blood cell and hemoglobin counts (which are causing his anemia). 
• He said that the type of gene mutation Joel has is the more uncommon mutation for this disease (CALR), which is often associated with a slower progression of the disease. His theory is that Joel has probably had this cancer for years (he noticed abnormalities in his blood test results from 5 years ago), which would explain his history of fatigue and other symptoms. 
• He hopes that the chemo medication he put him on (Hydroxyurea) will reduce his spleen and abdominal pain in the next month or so. He said that after Friday, Joel would continue under the care of the specialist at Penn Medicine, and he wouldn’t be surprised if this new doctor recommended a bone marrow transplant sooner rather than later because Joel is young and the healthiest he’ll ever be. 

Joel then met with the Penn Med specialist on Friday, and his approach to treatment was very different than what we expected:

• He actually took Joel off the Hydroxyurea, saying that he’d rather wait to put Joel on this type of drug until it was absolutely necessary because 1. it only addresses the secondary symptoms of this type of cancer, and 2. you can only use this type of drug for so long before it stops becoming effective.
• The good news: When we asked about bone marrow transplant, he said he felt Joel had some time before it would be necessary, and there was a chance that scientific advances would either improve the way these transplants are done in the meantime (since they currently have a 40% fail rate and at least a 15% mortality rate) or that other treatment options might be available when Joel got to that place (and given his training, expertise, and involvement in the field, at this point we feel safe going with his recommendation). This was all encouraging to us in terms of Joel’s long term prognosis and the hope of him living longer. 
• The bad news: Joel’s symptoms (mostly fatigue, abdominal pain, and other related symptoms) will likely continue and only get worse until he gets to the point where he 1. can’t bear the discomfort or can barely function, 2. starts to have new more concerning symptoms, or 3. his test results reveal that he’s at a dangerous point in terms of his blood levels, etc. He said that as we face the reality of what this disease means for our day to day lives, we will likely need to adjust our expectations. He also didn’t offer a lot of suggestions for easing the current symptoms (only to avoid things like excess alcohol, and increase blood-producing exercise), so we will have to do our own homework to see if there is more we can do to improve Joel’s quality of life. 

To summarize:

• Instead of pursuing something to cure his cancer (like a transplant), his doctor is advising us to hold off for as long as we can on each next step of medical treatment with the hopes that science will improve in the meantime. The hard part is that this means life will likely not get easier but harder in terms of Joel’s pain and abilities, and the burden that places on the family, and there will be a lot of uncertainty as to when things may take a turn for the worse or what decisions we will need to make in pursuing treatment. But we are very thankful and encouraged that the ambiguity of the future means the possibility of a longer life for Joel. 

This week has been overwhelming not only because of the whiplash we’ve experienced from differing medical suggestions and projections, but also because of the outpouring of support we’ve received from family, old and new friends, and even strangers. The encouraging phone calls, texts, and messages, the offers to help and provide meals or takeout/grocery delivery gift cards, and the offers to connect us with other medical resources, and your prayers have been overwhelmingly wonderful. Just to share one story, on Thursday morning our toilet overflowed and water went pouring into our basement, and friends came to the rescue to fix our toilets and take our kids for a walk so we could get a break. It is almost painful to receive such love and grace - probably because we know we could never earn or repay it - but we will seek to humbly accept it, praise God for it, and expect it to bear more fruit in unexpected ways. 

If you are praying for us, a couple requests:

• Most obviously, for Joel’s pain and fatigue, that he would be able to bear it, that our family would be able to find ways to adjust for it, and also know how to pace ourselves well for the long haul (with regards to work, future plans/commitments, etc.). Also, that we would steadily pursue and prioritize lifestyle changes (like diet, exercise, sleep, etc.) and that they could provide him with some relief or additional energy. 
• That Laura would find some answers and solutions to her health issues so that she has more energy and bandwidth to sustainably support Joel, continue to work, and care for the kids and all the demands that come with virtual schooling/the pandemic. She has a couple doctors appointments and we’re hoping those conversations and more testing will lead to some answers. 
• That we would know how to communicate well with our kids (ages 4 & 6) about what’s going on. We’ve tried to avoid sharing too much or sharing something prematurely, especially as we’ve been trying to understand the process before us, but we also want to help them understand the things they are experiencing, including us having less energy to help or play with them. 
• That our marriage would be strengthened through this season, and that we would learn to be humble, patient, and compassionate toward each other in the moments when we feel most weary or afraid. 
• Lastly, that we would be able to walk through this season with humility, honesty, joy and gratitude, and that we would be able to cry out to God and seek help from others when we are needy. Pray that our faith would be strengthened as we see him love and provide for us in the big things and the small, and that we would be changed for the better as we walk this hard road. 

Thank you from the bottom of our hearts, 

❤️ Joel, Laura, Elijah, and Eveleigh