Caught by Surprise!

Well things are going as usual here. Last night Josh had emergency surgery. He is doing ok this morning so let me tell you what happened.......Joshua's counts have been very low, that means that he can not fight infection and we need to watch him closely. These kids get fever and they have to put them on antibiotics so we have to watch for signs. Yesterday Josh was droopy and seemed down. I checked his temp after lunch and it was ok but I kept an eye on him. After that he told me his tummy hurt, but not anything specific. By about 5pm he started throwing up and he had a temp of 99.5. I called the doctor and they said take him in to get his counts and a culture to see if he needed antibiotics. We got to the emergency room and the doctor felt his abdomen and ordered a liver panel. That alarmed me a little but we waited for the labs and got an xray. Then the doctor came in and said his labs were good but he was concerned about is appendix in the xray and ordered a ct scan with contrast. Well things happened fast after that. They brought in a surgeon and he felt his tummy and said he needed surgery now. He started him on antibiotics because he was afraid it had already burst. I told him Gordon was on the way (I had left him home with the little ones) and he said he had better hurry, we would be in the operating room in 30 minutes. Gordon got there on time and Josh had a blessing and they wisked him away. The surgery took about an hour and the surgeon came out and said they got it before it burst! He even gave us pictures to give to Josh. All in all we were blessed, if he had not had low counts I would not have taken him in for such general symptoms and it could have been much worse. Also, when we got the counts they were up! So the oncologist said this was a great time if it had to happen.
I have been waiting to post in hope of having answers about our future, but I guess the present is all we can handle!!!! Today he is very sore and can't talk. The intubation irritated his throat and we will have to let it settle down. He should be doing better by his birthday on the 15th. Now that I have your sympathy I will make a shameless plug for his Bday. Send gifts! Itunes gift cards, webkins, or movie passes are the top on his list of things to ask for. Gift cards to purchase movies he can't get to the movies to see would be good too. There is not much else he wants but he is pretty down right now. He had been trapped at home for several weeks due to the counts and now they are up but he will be home for another week to recover. The nurse said she didn't know of another kid with a hot appendix on top of cancer. When the doctor told him he had to have surgery he said, "why does it have to be tonight?" As always what we need most is prayers. It seems the moment we feel secure with him something else collapses. I will post as soon as I know about Gordon's job, it looks like things are happening but we are still waiting. Thanks for always listening and caring about us and our sweet boy. Bless you.

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.

Summer Fun

Well I am adding this picture of Joshua. I have a video but I can't figure out how get it uploaded. When I do you will be able to hear him play his recital piece. The nicest thing happened on Sunday, we got a call from The Taylors, Candice was having her senior recital and heard about how Joshua missed his. She asked us if Joshua would play that night at her performance. It was so wonderful, he did a great job and was so happy! I am so greatful for their thoughtfulness. Sometimes Josh gets down and things like this really matter. He is doing well and we are enjoying the beginning of summer. We started swim lessons for all the kids. We talked to the director of the program and put him in a class that could let him attend but not let him feel behind. People always ask how he is doing and we say great cause he is but it is important to remember that what that really means is that he is doing great for a child with brain cancer. He gets very tired and doesn't eat nearly as much as he should. It shows up when he does things like swimming because he has no stamina, he can't make it accross the pool. We try not to put him a situation where it is obvious, that just makes him sad. Other than that things are great! Piano, swimming and just having fun is our plan for the summer. We invite anyone who can to come visit, we can't come to you but there is always room here. As always, thanks for your prayers and you are in ours.

(Our next hospitalized chemo is the 11th of June and we are expecting to be there one night if all goes well. I will post more info when I have it...........)

Wolves and Accidents

We have made it through the first round! We had our last outpatient chemo on Friday and now we have 3 weeks to rest before we start again. Joshua is doing great, I am very hopeful judging from this cycle that we can get this done. In typical Joshua fashion he has continued his scout work and on Friday night he got his Wolf at pack meeting. He is already heading down the arrow point trail and working as a Bear now.

I could not resist adding a few pictures this time too. The first is obviously, Josh getting his Wolf. It is not a good close up of me so I thought I would add one of those as well. For anyone who has not heard the story, I was mowing the lawn and tried to move the yard waste can. I tripped on the lid and fell into it. The doctor thinks I fractured my orbital bone but there is nothing to do for it but let it heal and make as many jokes as I can think of. ( I got canned.....) I have been trying to get Gordon to feel sorry for me but he can't seem to stop laughing long enough! Hopefully this will get some sympathy. However, I know that anyone who knows me will know that I am accident prone and not be too alarmed or concerned, while I tend to get into trouble I always seem to recover just as fast. Anyway, Josh is doing well and that is our measure of happiness. We hope all your families are well and please know we pray for you. Remember, no matter what slows you down we should all follow Joshua's example and keep working for our goals. Awooooooo ( Wolf howl)

Progress and Graduation

We are estatic! Josh is doing so well. He is not even on anti nausea medicine right now and his counts are good. (that means he has enough white blood cells to fight any infection that might come around.) He got to go camping with his dad and Teddy and his Uncle Justin. For those of you who may not know, once a year our church has a campout for the boys and dads. It is just an over nighter but they love it and it is called Fathers and Sons. Needless to say it was very important for Joshua, he has missed so much now. I was very worried about how tired he would get but he did just fine and is only a little tired today. I talked to the nurse and she said that it might get a little harder for him as time goes on but that this is a very good start to chemo.

Now, on to other great news! Gordon will finish his last class in June and we found out they have a graduation ceremony and he will walk on June 22nd. I could not be prouder of my husband. He has a degree but when he found he needed a secound, in accounting, he did not hesitate. He has gotten all A's except one B. To do that normally would be great, but he has done this during this hard time and never slowed down. He has worked into the night many times to get the assignment done and with all the other worries we have it is just amazing. Please pray for him to find a good job he has worked so hard for it and is so good at what he does. As always thanks for your prayers and you are always in ours.

Round One

Well we are off to a bumpy start. The good news first. Joshua's MRI was clear. That means that is showed no evidence of tumor left behind or new growth. (there was an area after the surgery where they didn't know what it was, left over tumor or swelling) Also we got the first round of chemo and he did not have a reaction to the infusion. (that is when they administer it, sometimes kids get really sick or have breathing problems) He is also eating well right now.

Well let me tell you the whole story. We went to the clinic on Thursday for our appointment. We had the MRI and then they told us the doctor was busy and we got lunch and then hung out and waited. Finally the doctor called us back and told us that they couldn't start chemo because they needed a 24 hour urine collection and forgot to tell us about it. She said well you live close come back tomorrow. So we went home and collected through the night and were back at clinic on Friday at 11am( when they told us to be there) They seemed unprepared for us and it took more than an hour for them to just get the sample to the lab for analysis(urine). Then we had to wait for the results to get started. That meant that we did not get chemo till 6 pm! Yes you heard right, they got us checked in a room and started at 6. That meant that we did not get released till 6pm today.(Saturday) Joshua had his first piano recital at 2pm today. His teacher gets a room at the Joslyn art Museum with a concert grand piano to play on and he missed it. I can not tell you how discouraged he was. He worked so hard on his piece and was so excited. We work so hard to try and keep his spirits up and he crashes very hard. I am very disappointed in our doctors and staff because it was preventable and not one but several errors caused this. We are hopeful that he will keep feeling good so that he can start to be up again. This group of drugs can have a delayed reaction so we are holding our breath till Tuesday. If he can get to then without going downhill he will do great with this part of the protocol. Also a word of caution now. We are in that part of the treatment where his white count can be low so no one can come around if they are sick. Well we are excited about the good news and want to focus on that. I hope all your lives are filled with your own good news and we will pray for it to continue. As always, thank you so much for your love and support and as Saturday draws to a close and Sunday starts --- Happy Mothers Day to all you wonderful Mothers, your example paves the way for our efforts.

This Is A Long One!

Well I haven't posted much during our break, I have been spending time with the children. We have worked in the gardens in the yard as much as possible. It has been fun and now my back aches and my knee is swollen! (I knelt on a brick) Josh has even gone to the Y to shoot baskets by himself a few times. (it is 3 blocks away and we pick him up when he is done cause he is tired) He is definately not as strong as he used to be but he is doing good. He has been going to school and riding his bike and having fun. That is why I should not feel the way I do. I am so worried about this week. Let me give you the schedule and then I will talk about it.

We have 3 doctors apointments on Wednesday. We have the hearing test and I do expect him to have hearing loss. He now panics if he is in a small place and people are loud. I think that the sound echoes and it is frightening to him. We also have a follow up with the radiation oncologist to see how he is doing. The other appointment is one I am not sure about. When all this started the orthopedic doctor he was seeing wanted him in braces to help his walking till they could do the spine surgery. The insurance denied it cause of his prognosis. Unknown to us the doctors appealed it and now they have approved the braces. We will get them on Wednesday. I am just not sure if this is too much to ask him to deal with. He wants them because they come with custom fit scetures(boy I spelled that wrong) sneakers. We decided to get them and see how it goes. He still gets tired easily so I just don't know.

That brings us to Thursday! We go into the hospital at 9:30 and they start an IV with his port so that they can use contrast during his MRI at 10:00 Then we go to the clinic and start chemo. They will give him chemo and fluids through the IV overnight and then we are supposed to go home on Friday late in the afternoon. Other parents I have talked to say if you are throwing up or have diarhea or are not eating you do not get out. We will have to see. This is the first MRI since treatment started so we are nervous to see what it says. Also, the treatment so far has been very hard on Joshua and it was supposed to be the easy part. It takes all I have to make him do this and see it slowly drain him. Even though he has been doing great, that is relative. He is different and I know that we are making it happen. It is hard to be on this road and feel like we have no choice. Now, I know that I have a bad attitude, don't worry we are positive and upbeat with Joshua. It is just that I can't shake this dread. We are doing our best to be prepared and ready to handle this. I have tried to get my projects done so I can focus on Joshua. We have had lots of fun during this down time and I think he is ready for this. Please keep us in your prayers and we will hope for the best. I know that we could not get through this without all the wonderful support. We love the cards and letters and it means the world to us that so many people care about Josh and our family. Thank you so much.

With all my whining I do not want to end this post without saying that we know that Heavenly Father knows our struggles and wants to help. We feel that he is with us and Jesus Christ stands beside Joshua. This trial must happen but he doesn't leave us alone and we will get through it. Joshua is a warrior and we are fighting with him. God Bless you all, I know he has blessed us.