Praying Through the Pain

“I wasn’t ready to get cancer, Mama. I still wanted to run and swim and jump and play. I wish I didn’t have cancer.”

Liam has repeated this to us at moments during his cancer journey, and we’ve heard it from him more frequently in the last month or so since we’ve been home. He is now a bit older and more in touch with reality than he was during the nine months of intense hospitalizations and infections through which he slept most of the time. He is alert and aware of his surroundings, and is unfortunately more conscious of his disabilities. He longs to run after his siblings, to play with them with the childlike speed and liveliness with which they naturally function. After the horrendous first two phases of cancer treatment that caused many debilitating infections, Liam’s five-year-old body cannot do what he wants it to do, and he is heartbroken.

As we shared in our last update, we got to the final phase of treatment and Liam ended up right back in the hospital with more infections, pancreatitis, and need of blood transfusions (all things the doctors said were not supposed to happen anymore). After several weeks, we returned home with a new heaviness of heart. We are so thankful to be home and out of the hospital, but our difficult cancer journey continues. We’re not done. Now we are dealing with the consequences and long term side effects of the last year on top of continued daily chemotherapy. Every ache and pain, change of coloring, rise or drop in temperature that we observe in Liam puts us in a state of unease. He has such a long road ahead to healing, and various side effects from the chemotherapy keep getting in the way. 

Soon after we got home, Liam’s leg became extremely inflamed and warm to the touch. We got him checked for infection, blood clots, and muscle strain, but every test came back negative. He was in too much pain to walk, so we had to carry him everywhere. Thankfully, this week it seems to be doing better. Since they ruled out most other causes, they suspect that the inflammation was induced by a certain chemotherapy he received recently.

After that, Liam’s platelets unexpectedly plummeted to an unsafe level. This is, as with all of Liam’s other complications, a very unusual occurrence at this point in treatment. They had to delay Liam’s cancer treatment again because low platelets can cause severe uncontrolled bleeding. He has had so many delays over the last year. We hope and pray it will not affect his outcome.

Liam was able to get off of TPN (IV calories) a couple of weeks ago, which was a huge blessing. TPN runs during the night and makes him nauseous, so during the months that he needed it, he vomited every single night. Now he is surviving on feeding tube formula. I am also able to hook him up to IV fluids as needed for extra hydration. Please pray that his appetite would increase and that he would be interested in food again. 

Lastly, we have a looming care conference with our entire medical team this Friday. We have been waiting for this meeting for several months as they have researched and consulted with Seattle Children’s Hospital regarding the future of Liam’s ongoing fungal infection. Our doctors have never had a patient with Liam’s specific leukemia get this type of fungal infection, so there have been a lot of questions in the air about how to treat it long term as the normal longer-term antifungal medications do not interact well with his specific chemo regimen. Please pray for wisdom for the doctors and that we would receive clarity at that meeting. 

Thank you, friends, for standing with us and praying for us during this long extended trial. We know that every prayer is heard and used by our God, and that none of our suffering will be wasted. Greater purposes are at work, and we continue to learn to trust God in His sovereignty as we participate in His good redemptive story.