Living on the Edge

Dear friends,

Liam is home! He was able to leave the hospital this past Wednesday. He is on TPN (IV calories), but we are hoping that he will be able to tolerate enough formula in his feeding tube to get off of the TPN this week. In general, he is doing very well, and we are hopeful that he will continue to remain at home.

This past month has been a whirlwind. After nine months of very intense treatment, Liam entered the maintenance phase. Maintenance, which will last about two more years, consists of daily oral chemo and monthly infusions. They said it would be easier than the first phases. They said he wouldn’t get any more infections or need any blood transfusions. Unfortunately for Liam, this has not been the case. Just ten days into the last phase of treatment ("maintenance" is what it's called), Liam was hospitalized with a new gut infection and pancreatitis. He needed a blood transfusion. He spent weeks in the hospital, only to get his discharge date pushed back by yet another bout of fevers. 

Needless to say, we are feeling very emotionally exhausted. This last hospital admit really caught us off guard. No one was expecting it. We had been feeling hopeful that normal life was on the horizon. We had been making plans to isolate less and be with people again. When Liam was unexpectedly hospitalized (again), I think it brought a lot of our trauma from the past year to the surface. It’s traumatic to have to rush a very sick child to the emergency room, not knowing how many weeks or months they may be in the hospital, or if they will come home at all.

Now that we’re home again, we’ve found it difficult to settle in. The promises of an easy last phase of treatment have already fallen through, so we feel very on edge about the future. Liam’s body is like a ticking bomb. At any moment, something disastrous could happen inside of him, and we could end up back where we started and put a halt to our lives and his healing. He has been forced to endure brutal things over the past year, and it feels so unfair that these complications keep happening even when they’re not “supposed to” anymore. 

Thank you so much for praying for our family, and we ask that you would continue. Pray for our endurance through this horrific trial. Pray that Liam would get a break from infections and complications so that his body can finally heal. Pray that we would be encouraged and not on edge now that we’re home. Pray that we would trust the Lord with Liam and with the future, knowing that He is working all things together for good.