Friday, October 31, 2008

Halloween Fun!

I am glad I am done whining, I have so much to be grateful for and Heavenly Father has blessed Gordon and I 5 times over!

Wednesday, October 29, 2008

Just a Litte Whine with That

Well we never seem to be up for long. Before I start this I had better say that yes we are blessed and Joshua is doing ok for now, we will see what his counts are on Friday.
Now, on to the whine.
We had an adjuster here right after the hurricane. She told us that the damage was substantial ( I agree) and said that she would get us our insurance fast so we could go to work. The amount of the damages was so great that they sent us a check to get started. Well long story short the mortgage company lost that check and we still do not have it. So we turned our attention to the final adjustment. Well we found out yesterday that they are not sending it. The insurance company says that the adjuster was way off and that they think the damage is only worth about 6 to 8,000. With our 4,000 deductable (yes you read that right, they do a percentage of the value of your home here) we will probably not get enough to fix the house. Now the insurance company says that we must start over again with a new adjuster and everything. It could be months before we get anything at all. I can not tell you how depressed I am. It is not about the money it is just another disappointment. I know that I have lots to be thankful for but I am just tired of this. I have had a hard time with this move and tried to be positive even after the hurricane. I told myself that this would be good, we could get new carpet (this carpet is in pretty bad shape) I told myself when we repainted maybe I could use some pretty colors but that is just not going to happen. I know that I am being selfish and should be more grateful but I can't stop crying. I keep doing silly things like signing up on Oprah hoping she will pick us for a home makeover or something. I know we are not special and that many people need help more than us but I am tired. Great, I am crying again. I feel like it will never get better, Josh will never be healthy again, we just can't seem to get to the top of the hill.
Please let me say, I know that Jesus Christ and Heavenly Father love us, I know this all has to happen and has a purpose. The only thing that keeps us from going under and giving up is that knowledge. I just don't know if I am up to the challenge, I worry that I am not strong enough, not .....something. I want to be happy, I want to look for positives, I want to be the example for my children. I want them as adults to say that their mom never wavered and always made a difference. I just can't seem to get past my broken heart.
Ok, I didn't mean to ramble on and I will be better tomorrow. I am blessed and I will keep counting my blessings. When I finish the long list I promise to feel better and smile. Please pray for us and I will post this weekend with Josh's counts so you will not have to look at this long.

Sunday, October 26, 2008

Chores, Costumes, and Counts

I am posting today so you will know what is happening now. I (of course) got home from Maryland, and things have been busy since them. I am so proud of my good husband. He took great care of the kids while I was gone. In the past he has been hesitant to take them out of the house when I was gone but this time he really went the extra mile. He took them to McDonalds for dinner and let them play in the playplace then they went to the church for Josh's scout meeting and afterwards they went to Walmart and bought me a card! Of course it took a few days to catch up on the chores but that is to be expected. I am still going to the laudromat and that takes a day so it puts me behind. I finally feel like I am catching up and back into a routine. I am excited to report that I am writing this from my new laptop computer. My old computer (old enough to have windows 98) is dying. It keeps getting hung and then takes 6-7 tries to restart it. We found a really good deal on a laptop so Gordon said I could get it. As long as the old computer works we will let the kids use it for Webkins and such but now I have a computer to do my work and Relief Society reports. I love it and feel like I am catching up to the times a little. I am also excited because Josh is spending more time in the hospital now and this will make it alot easier.
Moving on to Josh: He had his last chemo for this round and the next 3 weeks should be his down time but he is in a pattern where his counts drop on week 4 instead of week 2. On friday when they checked his counts he was ok but his Hemoglobin was very low. Below 8 requires a transfusion and he was 8.9. Normal is over 11. Because he is on the downward track the oncologist thinks he will need a transfusion this round but for now we are watching him. If he gets a headache or becomes pale(more than he already is) or listless we have to go right in. The danger with this low number is that he could have a stroke with this low volume. We will go back next Friday for counts and to see about that transfusion. We already planned to be there anyway for the big Halloween party that the hospital has for the children. We are pulling the other kids out of school so they can attend. the kids are excited about their costumes. Josh borrowed a Luke Skywalker costume and Ted is a baseball player. Miriam is Tigger and Dorothy a flamingo and Rachel is a catwoman. She has a pretty black dress with purple trim and ears and a tail. It will be alot of fun for everyone, they have trick-or-treat and a parade and lunch and games. Anyway I am nervous for him but that is pretty normal and I am sure he will be fine. Our church assigns 2 men to visit every family once a month and make sure they are ok and they are coming tonight so we will see about a blessing for him to make sure of it. All in all we are good and happy and grateful for the prayers that keep us that way. You are in our prayers too.

Wednesday, October 15, 2008

Midnight, Miserable, and Maryland

Ok, as usual I am behind in my posting with the events of the week. First off, we went to the hospital for our chemo admitt on Friday and they sent us home. They had 9 kids waiting for beds and nowhere to put them. Because Josh is on a protocol we were bumped to the top of the list and they called us at 9:30 Friday night. We got checked in and in a bed between 10:30 and 11pm. They have to hydrate before the chemo can start so that had us waking Josh at 2:30 to take one of the chemo drugs that is a pill. The rest of it is IV so he could sleep. Well, this was another bad round. It is getting harder and harder for him to handle this poison they are filling him with. They ended up giving him 4 different anti-nausea drugs at the same time and he slept for the next 24 hours. He would wake up to go potty and throw up and then fall back to sleep. He told me that he doesn't want to do this anymore and I had to give him the "its your job to keep trying and not give up" peptalk. Of course I feel terrible telling him that and wanted to cry but after I talked to him he said ok and in true Josh fashion did not complain again. We got him home on Sunday about lunch time and I am excited to say while he is tired he is much more stable than last time. He is eating just enough to stay strong!

Now onto other news. I am in Maryland as I type this. My sister had to have surgery to have her thyroid removed and she has heart problems so I felt I needed to be with her and her daughters today. (People are going to start thinking I have a thing for hospitals) I flew in last night and leave in the morning but I am very glad to be here for her. It was really hard to leave Josh, the other kids are accustomed to me leaving for a day or two but he cried and I almost didn't get on the plane. I am proud to report that he is having fun with dad and even conned his teacher into playing dominoes as part of his lessons today! I will be very glad to get home tomorrow, I worry so much now. Anyway,,, we are ok and grateful for the prayers that get us through each day.

Thursday, October 9, 2008

Ups and Downs

Well today I am not doing so well. I guess some days on this roller coaster are just harder. We went yesterday for his hearing test and are scheduled for inpatient chemo tomorrow. We got the bad news that he is starting to lose his hearing yesterday. The radiation damages the hearing but the sucker punch on this one is the chemo. One or the other can usually be overcome but both can be too much. Right now it is just high tones so it is not noticable in normal settings but the audiologist says that it is serious and wants him back in 4 weeks instead of 6. Unfortunately the culprit is one of the drugs he will get tomorrow so it is very hard for me to take him in. There is no way to know how bad the total hearing loss will be so they will just watch him closely and if it progresses too quickly they may adjust his protocol.
He has done so well and some days seems so "normal" that it is very easy to fool myself into believing that this isn't so bad. But then I get the wind knocked out of me and remember that he is critically ill. I guess that there will never be normal for us again. Gordon and I were talking about how this has affected the other children. Gordon heard Ted and Miriam talking and they very casually said that "when Josh is done treatment we can do that like normal" and Dorothy made a poster about herself for the class and under the section about things she can do she said she can do treatments and give shots. Apparently she thought that it was important to be able to do those things. We try desparately to make things ok for them but they are smart and this takes so much from our family.
We do have somethings to look forward to right now! 2 weeks before Thanksgiving the boyscouts are having a family campout and we can all go and then Grandma and Grandpa Jones are coming for the holiday. We just have to take it one day at a time and do the best we can on that day but boy is it hard. I want to make him better but everthing we do just makes him worse. I pray it is all worth it, it is easy to second guess every choice we make. Please keep praying, we sure need it and appreciate it. We love you all, if I haven't said so in a while please know that you are welcome here. Our house is a mess but there is always room and food and we will even try to be fun!

Thursday, October 2, 2008

School, School, and School

YAAAAAA! Josh started school. We had a meeting yesterday and he did testing afterwards and this morning. They sent us home with lots of schoolbooks and the new teacher will be coming on Friday! We are thrilled and Josh has been so upbeat about things. He will be having class 2 days a week at home for 2 hours. Yes, he can keep up with his class with 4 hours a week of instruction. I would ask why our other kids need to be in class for so long but why complain about a good thing? HAHAHA I am just so glad that he will be able to get involved and not float around the house all day. I talked to the teacher about having him do things in art and music too but they don't offer that so I will have to instruct him myself. Thanks to my mom, I think I am qualified to give him instruction on the arts and we are looking for a teacher to keep his piano up. He loves classical music so we have been working on listening to and identifing different instruments in a piece.
Also, things are looking up for the house. We are working with Robert, Gordon's cousin and we picked out carpet and tile and paint and hopefully they will start on the repairs first of next week. I am starting to feel better about being here and I am looking forward to getting the rest of the boxes unpacked so we can feel settled. I feel so blessed to be where we have some family to help us and such a great ward to lean on. We will have to see what the future holds for us but it is better this week than last. (At least we are drier and moving forward) I know that your prayers help make things happen and we really appreciate it. Keep it up and we will pray for you too.