Improvements With a Dose of Reality

Over the past ten days since our last post, Liam has shown steady improvement. His procedures went well, his blood counts and immune system are recovering, his gut seems to be healing, and there is no longer concern about the need for surgical intervention. Overall, he is happier and has more energy. Thank you for praying.

Despite this progress, there are some ongoing medical difficulties for which we would ask you to pray specifically. A summary can be found at the end of the post:

• Liam’s road to recovery from typhlitis (his gut infection) could take months, according to his medical team. He is still experiencing nausea, vomiting, and abdominal pain. The plan now is to slowly introduce food again to stimulate his gut and start administering medications orally instead of through an IV. Just two days ago, a small amount of food entered his stomach for the first time in almost a month. Once Liam can tolerate medications orally without vomiting, we will be able to go home. It could take months for Liam to tolerate enough food and liquids to receive adequate nutrition. In the meantime, he will continue to receive TPN (nutrients through an IV, which he has been on for the past month).

• We could be going home at the beginning of next week (!), but we will do so with TPN. The training to handle TPN and the actual administration of it is complicated. While we long to be home again, TPN will add one more task to Liam’s already complex care when we return home.

• Every time Liam’s blood counts and immune system have bounced back after chemo, he has had an IRIS response. In essence, his immune system is overworking and overreacting. This time has been no exception. Because of this, Liam is spiking fevers throughout the day and feeling unwell. Doctors are unsure how persistent the IRIS response will be.

• Liam’s fungal infection in the liver and spleen is still active, though it seems to be under control.

• Liam has deteriorated physically. He can barely walk on his own due to muscle atrophy and bone density loss.

• Liam has already started his next phase of chemo, which should last about two months. This regimen is not harsh on his blood counts. The hope is that his body will have some time to recover over the next two months before the doctors start another round of intense chemotherapy.

Thank you also for praying for Lily. She is in her second week of school and it has been a good shift for our family. That said, please continue to pray for Lily as she is struggling to cope. It has been a huge adjustment for her on top of everything else.

Finally, pray for Emily and I as we continue to experience prolonged separation from each other. Pray for us as we care for Liam at the hospital and our other kids at home.

To summarize (as the above is a lot of information):

• Pray for healing for Liam from the gut infection, IRIS, fungal infection, and leukemia.

• Pray Liam would be able to tolerate food quicker than expected.

• Pray for Liam to regain physical strength.

• Pray we can go home soon.

• Pray for strength for Emily and I in our circumstances as we seek to care for each other and our kids.

• Pray for Lily as she copes with school.

We are very thankful for all of you.