Thursday, August 28, 2008

Hospitals, Hopes, and Brewhahas

Well there is lots to say tonight. First, the important things. Joshua had his first hospital stay in Texas and it was rough. He had a reaction to the chemo and was very ill yesterday. I was very worried and spent the morning wondering why we came here. I now know... They were wonderful at MD Anderson! Everybody stepped up to the plate and worked hard to help Josh. The staff at the hospital showed so much concern and worked with all their skill to get the problem under control. I am so happy to say now that after an extra day at the hospital he is home and doing well. We will watch him closely and let you know about his counts next Tuesday when we go in for outpatient chemo. As we try to settle into our new home (yes we finally did close) and schools (Dorothy has already missed a day of school due to the hospital stay) and get used to the bugs(there are too many of them - we have moved in but the ants are unwilling to move out) I feel like we may make a start here ( if Gustov doesn't hit).

Now on to some business that I am very sad about. My last post generated more comments than any other single post. Sadly there were some that I would rather have not had. I am hoping that my comments tonight can be the end of this and clear up some misunderstandings. First, I love Nebraska. I have had the hardest time leaving. It was harder than any other place I have moved from. We will be forever greatful for the support and care we recieved there. In our hardest time many people stepped up and made a diffence in our lives. That said, we felt strongly we had to move for Joshua. There were aspects of his care that were not working and so we are now in Texas. NOW, the purpose of this blog is to let everyone know what is happening with Joshua and our family. It is also a place for me to share my feelings, that means that sometimes I will say what I am thinking or ramble (see disclaimer at top of blog) NOTHING I say is meant to hurt or offend anyone. A perfect example of that is the comment made in the last post about Nebraska. I was reminding myself why we had to move, because I was struggling at that moment with being in Texas. I am sorry if it offended anyone and I appreciate those who rose to my support when they thought I had been yelled at.

With that said, I ask that we keep the focus on Joshua. I also ask that you give me a little leeway as I pore out my heart. Sometimes I don't say the right thing but it is because I am so heartbroken. Our lives keep changing and I frankly can not keep up. I am greatful for your comments and wait eagerly for them. We love you all and I hope you know how important you are to us.

Wednesday, August 20, 2008

Cats, Cops, and Critical Care

Well do we have a story to tell. Today while we were taking our cousins, Kim and Robert Jones, daughter Sarah home we stopped at a red light on a major 6 lane road. A small cat jumped out of the median in front of us trying to cross the road. We waited but the light turned green and other cars started to go. She was very frightened and ran under our car. Now we were stuck not able to move. I got out of the van to see what I could do and she jumped into my arms! I am allergic but I could not leave her there to surely die so I put her in the van. I asked Sarah to hold her (she owns a cat) but she yelled that the cat might have rabies and didn't want to touch it. Now my little ones are freaking out ( the cat was fine just frightened) and the light turned red again. I calmed the children (Sarah included) and we went to 2 animal hospitals looking for help to keep this cat off the street. Unbeknownst to us the driver on the road behind us had dialed 911 and told the police we hit the cat and it was animal cruelty. Well both hospitals were closed so we decided to find a policeman to help us and when we did we got a shock, they were looking for us! After we assured him the cat was fine he said he would lead us to the local animal shelter. As we followed him another police car followed us. Talk about your low speed chase! Hahaha When we got the the shelter they came running out and were very glad to see a healthy cat not a run over one. We took her in and signed her in and they even remembered us because our older beagle Misty got out and they brought her home when Gordon first got to Texas. When I mentioned we were the family with the old beagle that snored they said - you are the people from Nebraska. Apparently Misty made quite an impression that day. Anyway thanks to the fact we had the cat and could show she was not injured we did not face animal cruelty charges. Also we are now friends of the Sugarland police department and the animal shelter. If you are in Texas there is a pretty grey cat looking for a home. Sweet and not afraid of strangers.

Those of you that know me know that while this story may seem far fetched it is the kind of thing that happens to us all the time and now we can start to feel at home in Texas! Also in case you are wondering while my arms swelled up I did not have any breathing problems so we where blessed for helping a defenseless animal and we did eventually get Sarah home.

Now onto other news. We were supposed to close on our house Thursday but the paperwork is not finished so it may not happen till Friday morning. I will get you the address and phone next week, it may be Tuesday before the hook ups are complete. Also we had our first appointment at MD Anderson and it was great! They really knew what they were talking about and the are taking great care of us. We have an MRI on Friday and then we will be hospitalized on Tuesday for our inpatient chemo. I was really impressed that with all the questions I threw at the doctor he knew all the answers without having to look and was not worried about anything going on, just gave us a plan to handle things. I will have lots more info when we are at the hospital Tuesday but we did learn that Josh will not be going to school this year. I don't know exactly what the plan is for him, it could include homebound instruction or even online school, but we will get that all set next week. They say that it is too much for them to try to get to school with unstable counts and the weakness the chemo brings. Every cycle will be harder on his system so we will go to plan B. (this is another thing Nebraska was wrong about) Faced with the school uniform Josh was not too sad to stay home and is excited about learning on the computer. All in all things seem to be falling into place so we are excited about what happened today and are feeling better about being here. God Bless you and I am sure your prayers are making a difference so thank you and keep it up, we pray for you too.

Monday, August 18, 2008

Still Waiting

I guess I need to post something - looking at the number of people checking the site. I wish I had some answers or something good to say right now. We are in Texas, we are hoping to close on a house this Thursday. Once we are done with closing I will post our address and phone numbers. We went to church on Sunday and the ward seemed very nice and it was very good to be somewhere familar. HOWEVER,,,, we still don't have an appointment with MD Anderson. They will not even make one without the insurance. We have a number now but that will not be in the computer for 3 days and so we have to wait. I do not think we could cut this any closer. Also, poor Rachel has been very sick since Friday. She started with a 103.8 fever that would not break with Motrin or Tylenol and then got very bad diarrea. The fever is down now but not going away and she can't keep anything in her system for more than 20 minutes. I am trying to get her to a pediatrician but the other kids insurance is not ready yet either. Texas is alot harder to deal with. Even though the kids insurance is a sure thing Texas wants us to fill out a bunch of forms anyway and they mailed them so we have to wait for them to arrive and fill them out and get them back. I am hoping we can fax them. Also we got the kids registered for school and found out today that they need special clothes. It is not a uniform per say but might as well be so we have to buy all new pants and shirts. The problem is that they must be solid colored and the shirts have a collar. You would not believe it but every pair of pants Miriam has has either a pattern or design on it. And none of them has plain shirts with collars so I guess I have to shop and get new clothes.
It will be better when we are in our own home and settled in a routine but right now we are just trying to keep anyone else from getting sick and get Josh in for treatment before we are outside of the protocol margins. Everything is very different here and I just am having a hard time having a good attitude. We all know who needs to fix that! Luckily, Josh has not gotten sick and while the kids are bored they are doing ok. (they did break a window but we fixed it)

Saturday, August 2, 2008

Catch Us If You Can

Ok, the last comment on the blog was about something I haven't posted yet! Things are wacky and I need to catch up. Lets see,,,,,,Oh yea, We sold our house in Nebraska. 4 days on the market and 2 showings. It is a miracle and we can't wait to be together again. The trick to the sale is that we have to be out by next weekend. SO off we go and on to Texas. Before you ask, we do not have a home there yet and are still looking. We will keep you posted as it unfolds. Now, on to more important matters, Josh. He is struggling right now. He is well but for some reason he just can't keep his numbers up. His count is 340 - even with the shots we have started. I give him a shot in his thigh every evening to help his body produce white blood cells but so far it is not good. His count was 1350 when we started the shots so the fact that it fell is disappointing. Also we have a new problem. His Hemocrit (I have no idea if that is spelled right) has dropped to 8. That is very dangerous and so yesterday they gave him a pint of blood. The doctors say this is fairly normal but the truth is it scared me to death. It was frightening to see him hooked up to the blood. Normally when he is on an IV I help if it beeps but I didn't even want to touch it. (eventually I did) I think that most days I fool myself into thinking he is ok and not that sick but seeing him like that means I can't avoid the truth. Also he is very weak and tired at home and I feel bad for him. We tried to go swimming but he could not make it across the pool to earn a wristband to get to go down the slide and was very sad about it. Also he is not able to gain any weight and is so thin he can't maintain his body temp so he was cold in the water and we had to leave. (please do not give suggestions for how to help him eat - we are already doing everything we can) I just do not know if he will make it to school this fall. If he doesn't it will be a blow to him. Also, I feel so bad for the other kids. Our world is small now, we used to go out and do things but now we just sit at home. I felt so bad telling them to get out of the pool 15 minutes after we got in so we could take him home. They are very good to him and never make him feel bad but that doesn't mean it is easy for them. We used to go on walks alot but that doesn't happen either. We are going back to the doctor on Monday to check his counts again. Please pray they are up, the doctors think they might be and they have to be or I don't know how we are going to travel. I wish I could be excited about this move but everything worries me now and I am just praying we get there in one piece.
Before I go I should list the things I am glad about so here it goes:

1. We are all healthy (you know what I mean)

2. Our house sold here in Nebraska

3. We will be together soon.

4. Josh did get to go to camp and enjoyed it.

5. Miriam and Teddy went to day camp for a week each.

6. Rachel is potty trained (not at night)

7. My vegetable garden is over grown with vegetables.

8. Our friends always seem to know when we need them (ok that isn't so great - we are leaving them)

9. Gordon and I have been bowling this summer and our team is in 2nd place.

10. Texas will be better for Joshua. ( and hopefully good for the rest of us!)

As Always, you are in our prayers. Pray for good counts and a safe journey................Thank you all.