We are so grateful for all you have done for us. Thank you again. Radiation is over. 8 chemo cycles complete, 9 to go. 4 months straight inpatient, surviving and then recovering from liver failure. And hooray! Leif will (probably) be discharged next week! So Mary, Eric and Leif will leave our hospital existence and feel air, see the moon and sun together, go back to cosleeping in our Oakland home, and be human for a bit. The 9 more cycles of chemo will take us into next spring if it goes well. And most of the chemo requires biweekly inpatient stays. So it's a long hard, haul. Beautiful Leif can play and laught and hug and talk and cuddle and be Leif. But all his organs have a greater or lesser degree of damage that we will need to tend to for his life span. And the cancer fight continues. But with actual hope. Thank you for the hope you've given us when we had none. Thank you for your love and support.
Mary C. Greening, Eric Hamlin, Leif Osiris Greening-Hamlin
The last update was posted at one of Leif's lowest points. I'm happy to report that since that nadir, things have only improved. Just last week the breathing tube was removed from his throat, and he has been awake and talking. He asks for his favorite toys, movies and books, albiet in a tiny quavering voice.
They plan to release him from the PICU sometime in the next few days and shortly thereafter, they anticipate that he will be well enough to continue chemotherapy. Time will tell how well he does, but for now, he's on the mend.
Unfortunately right after our previous, excited, update, we got more bad news: Leif has an extensive fungal infection in his lungs and some kind of infection in his brain. Fungal infections are difficult to treat, and the PICU staff is apprehensive about his chances. On the other hand, he looks good clinically (meaning how he's doing overall, what they can glean by looking at him). So that weighs on the positive side.
Thank you all for your continued support. It really helps.
We just posted the first update in a long time yesterday, but today we had good news and had to share it: today Leif is much better than he has been in weeks!
There are numerous signs that his liver is healing, and many medications have been discontinued. This is the first moment when we have been ready to relax and believe that he will survive. He's still in danger, but it is much lessened from a week ago.
A lot of things have changed since the last update. First, we reached our initial goal of $23,000. A deep "thank you" to everyone for your generous support.
Second, Leif's case has gotten significantly more complicated. On May 19th, he was admitted to the hospital for fever. This is fairly common on an accelerated chemo regimen, since any fever can be a sign of sepsis for someone with a compromised immune system.
Two days later he was diagnosed with Venal Occlusive Disease, a rare kind of liver failure usually associated with extremely high-dose chemotherapy of the kind administered before a bone marrow transplant. He was transferred to the Stanford ICU for an experimental therapy.
There the fluid retention associated with V.O.D. got the better of his lungs, causing them to collapse. He was intubated and put on dialysis. He hovered near death for the better part of two weeks, suffering internal bleeding and infection.
Now he seems to be on the mend. The doctors are hopeful about his prognosis, and every day brings slight improvements. It will be a long recovery, however, and every day in the ICU is another day without the chemotherapy he needs to treat his cancer.
I am so grateful for your help. Leif is full of red blood cells from the transfusion yesterday, waiting for his white count to go up so we can go inpatient for six days of chemo. Right now he's full of joy. Right now is okay. Much love to you all. Thank you so much.
Thank you so much for all your support. I am so touched by your generosity. Leif is napping now between chemo treatments so I'm able to write this quick note. He's still got his lovely red hair for now and no major nausea yet. Thursday we go back to the hospital for six days of inpatient chemo. And we're consulting various experts about the surgery and/or radiation that will happen in eleven weeks. But right now we're home and having some beautiful moments walking the dogs, sleeping together in our own bed, playing with toy trucks. Thank you so much for your help. Thank you.