Friday, July 31, 2009
Gary's levels will be back in the morning. The doctors will give us our new plan after that.
We are so excited for next weekend! We are going on a camping down toward Portland, then going to the Cure JM concert for Mason. The kids are super excited because we haven't had a chance to do much of anything as a family this summer.
Tuesday, July 28, 2009
Unfortunatley, after a swim last night his NG tube came out. Just like that. For the first time! Just came right out. The family all got into there positions. Gary on Uncle Bill's lap, Daddy holds hands and keeps his head still. The kids behind us watching. Oh yes, we can't forget Auntie Alyssa. Runs and hides in a corner, rocking back and forth in a fetal position till it is all over. I don't blame her. But it went in, at first I didn't think it was going to go, but gently pushing so it finds it way down. He looked so much better with it out I was tempted to leave it out! Everyone was having anxiety about getting it back in so we didn't waste too much time. We needed to get it over with. Our next overnight infusion is on Friday. We have our appointment at 4. Hopefully this will be our last weekly infusion. There is a meeting on Thursday to discuss what will be done from this point as far as where to go with treatment from this point.
Saturday, July 25, 2009
Friday, July 24, 2009
Wednesday, July 22, 2009
Tuesday, July 21, 2009
Saturday, July 18, 2009
Friday, July 17, 2009
Thursday, July 16, 2009
Picking up where I left off......
So I spent 10 minutes with Dr. Pachman. She was very honest with me and said that she has gotten lucky. She explained that she has hit a lot of stumbling blocks along the way but written proof is something she has been unable to produce because of lack of time with some of her results. She told me that Gary and his treatment are to far along to put her hand in it. I felt like if that is something we really wanted, for her to take over, she would have. She pointed out a lot of things that she felt were not practical. Gary is too young to travel for check-up's and treatment. Gary's case is complicated. He does not have your typical (if there is one) run of JDM so far. The fact that he is in the middle of Cytoxin and Methotrexate, I feel she would not change much or it may be not beneficial for our treatment. It is one of the things I was prepared to hear. Of course I did not want to stay in Chicago. It was all good news as far as, she didn't hold a stop sign up and say, "this isn't right." She asked me about me. Reminding me how important it was to take care of me. I know this. I find it loving and nurturing and motherly of her to offer such advice. I don't mean to sound ungrateful. But I didn't fly all the way from Seattle to be reminded of the fact I need to make sure I exercise. I don't mean that in a disrespectful way at all and I may just erase what I just typed. I do appreciate that. I really do. That is not my heart. That is the desparation and frustration talking. It is the dark unknown of what I really should do for Gary. It flustered me because I was there to find out if we were doing everything we should be doing, and I didn't get that magic answer. To have an expectation like that was a bit unrealistic on my part. She is a doctor, not a fortune teller. Only God knows Gary's plan. So I shall go there for my answer. Anyone have his email? HA HA HA HA? Dr. Pachman is willing to consult with my doctors or with one doctor. I am still trying to figure out if that is necessary at this point. I am thrilled to be in contact with Damon and Kristen Smedley, Mason's parents. I am just starting to ask questions. I like everything they have to say so far, including a comment that they considered coming here for treatment. I am in my own head right now, just sitting. I am blessed.
Tuesday, July 14, 2009
Saturday, July 11, 2009
I have to say it was interesting this stay. I am completely out of the closet with going to see Dr. Pachman. I talked about it openly and freely. I noticed there was a change in care. I am not imagining it (you know my imagination, works great). We met a doctor we have never met before, I mean I most definitely liked her, but I wonder after three months of care, (I mean we are talking after being there 70 out of those 90 days, ok so not that much but close to that ratio) don't I at least get to rotate the many doctors we have seen? That's fine. There wasn't a disregard in any way. Gary still got his care, but there was a quality that changed. I suddenly was having to ask for things more than once. I asked one of the doctors (he was a fellow so still learning I guess) for a note for Gary to ride the plane. You know, something that says he is safe to fly. I don't anticipate any trouble with that but just in case I want to be prepared. Didn't get it. Then the nurse I have been chatting with about going to Chicago, gave me more warnings. Uuuuugghhhhh. Thanks for the anxiety. She warned me to remember that sometimes Dr. P is about the research aspect of this disease. She tends to want and apply's the same treatment for each patient. She also warned that she will have tests done that insurance doesn't cover and Seattle doesn't use. What do I with that? So suddenly was filled with all this doubt, and should I go? But I was distracted with trying to chase after everybody trying to get stuff done for the trip and for Gary. My distraction dissolved my anxiety and fear. By the time we loaded up to go home I was tired and angry. During rounds, the doctor looked at her interns and said, "Mrs. Bradford needs his latest lab reports, blood counts, clinic notes, ect,. please help her obtain those. She is headed to Chicago for a second opinion." Hmmmm I thought. I just might be paranoid but did she say that in a way? I interupted her and said, "no it is not a second opinion, not at all, it is just a wise consult." After asking all day for someone to get those reports to me so I could take them with me, it was 5 o clock on a Friday. They had all already hit the pubs for the night and I was getting fiesty. Not to mention all delays. Delay in delivery of medication. Blow IV's. I am sorry to be so whiny here but really people, no I do not want to poor his pee pee from a bag into a cup. Why would you ask me if I wanted to do it. I suppose after all these times staying in the hospital we have been lucky we have not had more experiences like this. I could go on and on. Like the pump to feed Gary was malfunctioning. It was NOT working. She had me sit by the pump and turn the alarm off and hit continue every time it went off. Every time she came back in I said, "it is NOT working". For thirty minutes I was patient, this was on top off holding a screaming, dripping with sweat, hooked to tubes and wires, two year old. The steroids drive him crazy! I asked for Tylenol and they walked in and of course handed it to me. I just giggled because after awhile, its all ridiculous. I asked for benadryl . Never got it. So I went into my own stash of medication and got my own. He was better after that. Then I finally got my pump out and hooked up to our home pump. I mean I did have my nurse running around finding my reports. I told her I wasn't leaving without them. So frustrating, I had to explain it over and over again, and they just look at me like I need an interpreter. Someone comes in for the clerical station explaining that Health Records had gone home and I need a release. I already did that I explained. I was starting to feel sorry for the next person that came in trying to pass the buck because I was about to take my Christian pants off and get mean. Tired, hungry, frustrated, not a good combo for a Mama Tiger. The nurse eventually got what I wanted I think. After idiotic banter with the intern, who did not come in and see us off like they usually do (hmmmm? wonder why?), I was ready for home.
So today I need to wrap up last minute details, get all my records together. My little sissy doesn't get off work till four and our plane leaves at 530, so we will be running tomorrow. Since we are checking in at the last minute, I need to try and get everything into a carry on. All the formula and his meds, should be interesting. It will take precise organization of space for this to happen. Tomorrow I want to try and get the house clean for when we come home. You know how it is. I hate coming home to a messy house. My wonderful sister and brotherinlaw are taking the kids camping so I want to go get a few things to send with them. Yes, I am stressed, but very much blessed!
*Fun tid bit: Last night I was pulled over in Black Diamond because my headlights were not on. I had them turned on but for whatever reason I didn't notice they were not actually on and working. (Reason was I was so tired). It was fun. Only because I did not get a ticket and the officer was nice. I am sure he was just checking to make sure I wasn't drunk. I had gotten flash just before I passed him. I thought, why is he flashing me? I started looking at the road, and was figuring out what was going on as I passed him. I thought, well, if he doesn't pull me over, I guess they were on after all. I am glad he didn't drag me out of the car, step on my head and tazer me. Would have put a real damper on things.
Thursday, July 9, 2009
Yesterday we took Elexis up to see the pediatrician (I swear I should just wear scrubs everywhere, so I fit in with all my medical peeps, after all I am at some kind of medical facility, all the time, lol). She has a strange rash covering her entire back. Ya know how I love rashes. Rashes are a big deal! Anyway, our doctor wasn't quit sure what it is. I know exactly what it is. But I am leaving tonight and then again on Sunday so I wanted to be safe, not stick my sister with having to take her to the doctor if it got worse. It is from excessive swimming, and sun exposure. The doctor we saw did run down the usual list of questions. Does anything hurt? Your muscles? I felt like grabbing the man by the collar and saying like Clint Eastwood, "don't go there doc, I ain't in the mood for games, I already got one with achen muscles, rash, I don't got it in me to do two of um now." But I didn't do that. That would have been scary. He may have produced a needle and stuck me with some sleepy juice to get my hands off him. I know, I have quit the imagination. But she is fine. Just needs a little scrubben and some lotion. If it doesn't get better, than we can come back.
Gary continues to do better. Yesterday wasn't as good as the two days proir. He was more ouchie yesterday and by 7pm he was asking to go to bed. He wanted to lay with Mommie in bed. I am sure until we can get this into remission, we will always have our good days and bad days.
Another angel dropped a wonderful gift in the mail for our family. No return address, no names to properly thank you. Well we thank you! WOW, my children especially loved it! Thank you. Those will come in handy. I will try and update from the hospital later on.
Tuesday, July 7, 2009
If you email or post comments to me and I don't say anything back, I really want to and I mean to. Sometimes I do in my head but then don't get a chance to actually sit down and type it. And if I forget, thank you thank you thank you!
Monday, July 6, 2009
Saturday, July 4, 2009
Friday, July 3, 2009
Our overnight stay went well. Gary tolerated his chemo drugs ok so far. We still have one more to go this morning which I am glad I blog because it reminds me once again, hang out for a few minutes or bring a bucket in the car. Last methotrexate they put a anti nausea in his iv. I will remind them of this! I did not talk to the doctors about us going to Chicago. I will. I will. Stop nagging. I think Chicago (Dr. P) will agree with his treatment. I don't think it wise to transfer his care to Chicago but have Dr. Pachman as a consulting physician. I hope everyone has a wonderful 4th of July. Gary should, it is a night time activity :).
Now I am researching where to stay. Think I will go for the Hilton or the Marriott. NOT A Super 8 will do.