Day 34 Part 2

Since the last journal update earlier today we have faced a lot of new and unexpected obstacles. William’s nose and mouth is bleeding. No, I don’t just mean some occasional blood, but actual flooding and “scare the crap out of you” amounts of blood. He is now also vomiting blood from what we are assuming is bleeding from the stomached…….. Earlier today the good news was that the stupid catheter came out, well I spoke to soon. Urinating is now an extremely painful feeling for him and my poor little man is in so much pain that he is actually punching walls while trying to pee. Believe me, this SUCKS! He has attempted to pee in every possible sitting and standing position just to relieve some of the excruciating pain….. Nothing seems to work. William is now also on morphine…. We switched him from the pediatric pain killers as they no no longer seem to be working for him. Unfortunately the Morphine does not seem to be working on the pain in the penis Seeing someone you love so much go through so much and feeling absolutely useless and limp with worthlessness is the worst thing! I don’t have words to explain the extreme pain and gut ripping terror that I am experiencing. I hope that you never have to experience this. The obstacles we faced two weeks ago now seem like small little ant hills compared to the giant mountains we are now climbing. I felt so prepared for this round of chemo and now we all have this sickening feeling in our stomachs that maybe we were a little too ignorant going into this second round. ...

Day 34

William and I (mommy) had an extremely rough night last night. Between all of the catheter blockages, itching, headaches, vomiting, and panic attacks, we got very little sleep. The great news is that the catheter came out this morning! William's bladder is bleeding (a lot) again and under normal circumstances the catheter would stay in but, the doctors decided that the emotional and mental distress that the catheter is causing outweighs any physical good.... so the stupid thing came out :) I will be doing a double shift with William tonight (grandma did a double Saturday and Sunday) so hopefully we have a peaceful night. It's so hard on everyone when a basic need such as sleep cannot be fulfilled. The Dr. did confirm this morning that if William can meet his goals during the next 7 days and CCS/MediCal come in as approved before then, then we will be allowed to go home for 7-10 days ;) Our goals are as follows: - Daily walks -Physical Therapy Exercises. - Eat/drink 700/950 Calories per day - Decreased pain - Zero bleeding in bladder I am so excited about going home but, at the same time I am extremely scared and I have found myself go into "panic" mode just thinking about the "what-ifs". The nurses here have been so great and my biggest concern is that when we get home I am going to come across a situation that I won't know how to handle... WOW, That's a lot for me process. In the meantime I have already been home a couple of times and done some cleaning. However, on Thursday and Friday I will be there all day doing the final DEEP cleaning and sterilizing and furniture moves, yard work, etc. Randell is about 50% complete with the fence so hopefully that will get done during the next 7 days too. Grandma Sally is flying home to NC on Sunday. She will be there with Grandpa (DoHo) for a week before returning to California. I think the plan for now is to have her stay with us for a couple of months. Thank you so much for all the love and prayers! The support that we have received from everyone has been so encouraging and heartwarming that William made a comment about how loved he is and he didn’t even know it ;) Keep on Keeping on. LiveStrong.