Support Registry Update

Another Update on Josh's 2nd Round of Chemo

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Serge here, and I wanted to share another update on Josh:

The good news is that the chemotherapy portion of this (second) round is finished, and he is now in the recovery phase. His counts are around the lowest point we expect during this part of treatment, so we're waiting and praying for his blood counts and immune system to build itself back up, wait faith and hope that his counts recover as quick as they did after his first round. 

If they do, we are hopeful that we might be able to bring him home sometime the week after next.

There have, however, been a few unexpected complications - one of the biggest things the medical team is working through right now is Joshua's platelet levels, which helps blood clot (to stop bleeding, etc.)...  It's normal for chemo to cause platelet levels to drop significantly, so platelet transfusions are a part of treatment, but Josh's immune system has been creating antibodies for the platelets that he's been receiving - basically, his body is removing them much more quickly than it should.

Right now his platelet levels are extremely low, so this is something we very much need prayer for.

The physicians are working on identifying which markers his antibodies are reacting to, and should be able to provide him with more effective platelets once they understand that. The hope is that they can screen and select platelet units that are a better match for him and will stay in his body long enough to do their job.

The amount of blood, plasma, and platelets that he's received has also given us a whole new appreciation for something most of us rarely think about: donated blood.

Josh has depended on donated blood and platelets pretty regularly as part of his treatment, as do so many others, every single day - Somewhere, someone whom we will probably never meet took time out of their day - and their blood is now helping keep our son alive. That is an incredible gift.

And as I think about the physical significance of blood - especially while sitting beside our son - I can't help but reflect on the [spiritual] significance that is the foundation of our faith...

I would never compare the gift of a blood donation to the ultimate sacrifice that our Savior made for us - there is no comparison - but I can't help reflecting about the fact that one person’s [physical] sacrifice can give [physical] life to another, as did His sacrifice [spiritually]: It has become another pointer to the fingerprints of God, as we go down this path and learn His lessons. This experience has been spiritually awakening in so many ways.

That said, I did want to say that we are incredibly thankful for those that do donate blood, and wanted to encourage others: If you are healthy and able to give blood or platelets, please consider making an appointment with the Red Cross or your local blood bank - there are so many people that need blood infusions - especially since there is a shortage nationwide

Platelets and blood aside, we did have a scare yesterday - Josh started having pain in the area around his appendix. The doctors did an ultrasound to check for what they thought might be a case of appendicitis, but they did not see anything immediately obvious; although the imaging could not completely rule it out. Josh has also been throwing up quite a bit since yesterday morning - and this morning, the physician told us that it might be an infection in his gut. For now they are keeping an eye on him closely, especially since his platelets, white blood cells, and other counts are so low - and once he receives his platelets (planned for today), they will be able to see if antibiotics are needed. 

Outside of the hospital, daily life doesn't stop, especially with school right around the corner: I need to start thinking about work again, Anna is getting ready to begin teaching, and Theo, Liam, and Ada are getting ready to head back to school (and Ada to Daycare), as we try to figure out what school will look like for Josh...

He is supposed to be starting 10th grade, but because of his treatment and weakened immune system, attending school in person isn't an option right now. That has been difficult for him.

He was really looking forward to going to 10th grade, but watching the way he responds to the situation he's in continues to humble us.

Rather than accepting that he wouldn't be able to participate in highschool classes (especially the class he was most excited about: cybersecurity), Josh started trying to figure out how he can attend class - even if digitally:

He 3D-printed some parts, used one of his ESP32 boards (little computer thing), planned out a camera system with actuators, and started working on a way to livestream what he needs from his classroom to his hospital room (with the ability to be able to control the camera remotely) ❤️

We are so incredibly proud of his drive, mindset, intelligence, and fighting spirit - not just because he's smart - but because he continues to fight and apply the gifts that God has given him.

His body has been through an incredible amount over these last couple of months, but his mind, his spirit, and his faith remain strong.

And that gives our little family strength too.

In regards to the bone marrow donor search:

We are also still waiting for more information regarding Joshua's eventual bone marrow/stem cell donor.

The last update we received from the transplant team at OHSU was encouraging: there were several promising potential donors identified through the national and international registries.

There is still additional contacting, testing, and matching that needs to happen before the team can choose the best donor for Joshua.

Now that Joshua has developed these antibodies, there may be some additional factors for his physicians to consider as they work through transfusion and transplant matching. 

We don't yet know exactly what impact, if any, that will have on the donor search, so for now, we wait and we pray.

The current plan is still for Joshua to complete three rounds of chemotherapy before moving to OHSU for the transplant portion of his treatment.

Our faith and our spirits remain strong, but this path we're being led down is not easy... We ask for support in prayer so that we continue to see (and not forget) for God's fingerprints, which remind us that we are in His hands - and not walking through this alone.

Please Continue to Pray With Us

Please pray that God protects Joshua's mind, body, and spirit, resolves his platelet and gut issues, blesses his doctors, the medicine, and continues to guide and protect our little family as we travel down this path that He has set us on.

Thank you for continuing to carry our little family in your hearts and prayers.
  • Serge, Anna, Joshua, Theodore, Liam, and Ada ❤️

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Comments

Donna Flores 5 days ago

Thank you so much for the detailed update on Josh! It gives me specific things to pray for-but also shows all of us your enduring faith in our Savior! I love how Josh is problem solving his way through school! He may end up helping other kids going through similar circumstances! God be with you all! In Christ, Donna

Daletech48 5 days ago

Continued prayers for healing for Josh, wisdom for doctors and strength for all of you as you walk through this. 🙏🏼

Inna Prigodin 5 days ago

Thank you for the update! Gives new perspective on blood donation for sure. Praying for Josh and you guys as life continues to barrel on.