Tornados and Houston?

Well I have hesitated to write because I just didn't know how much to share. Josh is doing great, please don't worry about him. His second round of chemo went off without a hitch. Well, ok, there were a few...... We decided that Gordon would stay overnight in the hospital with him and I am glad that he did. They had time to bond and that was great. It was not so great for Gordon when the Tornado warning came and they put them in a closet. The hospital policy is to group patients with like diagnosis so as not to spread infections and such and it happened that on that floor of the hospital there were only 2 chemo patients so they put them in a supply closet. It was another boy so that was good for Josh but the other parent was a mom so I don't think Gordon enjoyed it much. They stayed there from about 5:30 till 10pm. No TV and the laptop computer they had did not get internet. Well they survived that and the next day was uneventful till just before they were to go home. Josh and Gordon were in the play room enjoying the WII. They were bowling and Josh stood up to swing and stepped on his IV. He pulled the needle half way out of his port. Well then a whole group of nurses gathered to see if it could just be pushed back in but the consensus was no. Of course Josh now panics when he is crowded around and he freaked out. The worse part was the port has to be flushed with heprin and so they had no choice but to access it again to do that. Soooooooo after I got on the phone with the nurses and told them to get everybody that didn't need to be there out of the room they put Emla (numbing cream) on it and waited an hour for it to numb and accessed it and then flushed it with heprin and let them go home. I am proud that with as scared as they were making Josh he still let them access it again and get the job done. He is home now and doing great! We started a new medicine this weekend (see story in the next paragraph) and he is doing great with that. It is too big to swallow and so we crush it and it is very bitter but he gets it down. He will take it every weekend, Friday through Sunday, for the rest of treatment so getting used to it is important. My only concern is weight loss. He lost another pound and that was before treatment. I let him eat everything he wants but he just can't seem to put on weight. We will keep working on it.

Now, on to the reason I have had a hard time posting. We are having serious problems with the oncology department here and it came to a head this week. The doctor we work with has made several mistakes and seems to disreguard Josh. Best as I can figure she is treating cancer and not a child. She has a good reputation but I think she is getting burned out. We would switch doctors but there are only 3 and they work side by side so I don't think it would help much. The other problems have been troubling but this week was the worse. We went to clinic on a day our doctor was not there so we saw another doctor and a new physicians Assistant. I was asking about magnesium, our doctor told me we didn't need it on the last cycle but then gave me a prescription for it anyway. I thought I would ask someone else. After discussion they told me we would wait and watch his magnesium levels to start it. This is of course an example of the lack of comunication we are stuggling with. However the PA was there and started asking questions. She looked at our medication sheet and saw that we are not on any other meds. She asked and I told her that we were not using anti-nauseas and she said what about Bactrum? I said what is Bactrum, and she told me that they should start it when they start chemo and take it through for the complete treatment period and then 3 months after. It protects them from a type of pnumonia (I know I spelled that wrong) that is deadly to kids on chemo. For the last 6 weeks we have been playing russian roulette with him! Our doctor forgot it. I know people make mistakes but every week we fill out those med sheets and she never even looked. If she had she would have caught the error but it took a PA that was new to notice what no one else did. Also, if it was the first mistake I would be more understanding but it is about the 5th. I have been researching and have been advised that children with brain tumors should be seeing neuro oncologists and none of the doctors here are one. There is no option here for treatment, no other centers to go to. I have checked and there is a list of the top ten brain tumor centers in the country and 2 of them are in Houston Texas. My heart is broken as I love Omaha but we do not feel we can stay. Gordon is flying to Houston in about a week for some interviews and we we will move when he has a job. I keep hoping something will change but I do not see how so I will begin packing up the house so we can show it and sell it. Our lives are no longer our own, this terrible beast (cancer) now rules us. I cried most of the week but now I am trying to look forward and I am excited to move by some family. Gordon's cousin Robert and his wife Kim and their children live there. They have a son who is about Josh's age so he is very excited. Also, it will be exciting for Gordon to be working again and there seems to be a lot more opportunities in Houston. This is the best thing for our family and we will be fine but it is hard for me. I love the wind and cold and people here but I am sure there will be much to love there too. Well, I guess that it helps to write this down but I hope you can see why I wasn't sure how much to tell. I decided that the purpose of this blog it to share this journey, no matter how rocky and uncertain, with the people we love and this is part of it. It is just hard to be so unsure of were we are going and what will happen next. We love you and your support it what we hold onto when we are sinking in desisions and feel so inadequate to this task...........God Bless your families and we keep praying for you. Please pray for us and if it is for something specific this week, let it be for a job in Houston so we can begin to move forward.