Nov 28, 2012 - 12:53 pm
I am seeing all the people I started this journey with ringing the bell and I am extremely happy you have made it this far, but I also find myself upset that nothing along this journey has been normal for us. It is like we got on the wrong bus. From the very beginning you stood by me as I lamented about all our delays and you were there to encourage. Now after all this time we never got the neck dissection, never got the chemo and only got 13 radiation treatments. So if we kick the plasma cell leukemia we will still have a beast waiting. This PPCL is the pits. He has had two blood transfusions a platelet transfusion, magnesium, potassium, blood cultures from the PICC and arm twice. Slept with ice packs under his arms to break fevers. We need a new and improved PICC line. They took him down to get it and we have to wait some more on some kind of test to make sure it is safe. They are gnawing at the bit to give the seven drug chemo, but without the access they can't. I am so frustrated with our situation, but at least the doctors and nurses are extremely nice. I think they had everyone they could round to see David the anomaly. I will continue to hope and stay on the forum, but please.forgive me if I seem like I am in despair from time to time. I keep telling you how much you mean to me, but I really want you to know. Life is so fragile and there is only so much time to tell people who are special how you feel. It helps me to keep going knowing hou are here for me. I really don't know others who understand. Even the hematologist, who doesn't understand why David has a PEG tube.