Thursday, October 30, 2003

Thursday, October 30, 2003 7:04 PM CST

Well today has been a very stressful day. Luke left yesterday afternoon with Julia to go home and get things ready. This morning Nathan had his MIBG scan. I woke him up to take him over and he couldn't have any food or drink so he was quite upset about that. We went over in the wagon and it was icing/snowing and not very pleasant (we have no car up here). Nathan had a huge fit when he saw the scan table and screamed for quite a while. He was finally sedated and they did the scan. We took him to recover in a bed right under a light that did not turn off and so he had a big fit about that because he still wanted to sleep. I got him in the wagon to leave and we were told they needed to to another scan real quick and so we had to put him back up there and he wasn't happy about that. After waiting another 20 minutes for the scans on CD we went back to the apartment. He wanted to go back to bed and so he slept until it was time to go to the clinic. I had to wake him up to do so and he was MAD about that. I tried to put him in the wagon and he wouldn't stay in. He was still sedated and so very unsteady basically drunk-like. I called over to the offices and asked them to drive us to the clinic and they did. HE screamed the whole time and tried to make me stop carrying him.

At the clinic he kept trying to escape out the door but he couldn't really walk and was stumbling around and I had to keep getting him back on the couch. They finally put us in a room with a bed and he calmed down and went to sleep. He slept for about 2 hours and then we woke up cranky and mad again and had his exam. His counts are great. We got home around 4:00 or so and he has been OK but is still showing effects of sedation. He is currently playing on my bed.

In the midst of this day Luke and I have been trying to figure out what is happening with insurance and surgery. First off - the doctors agree that Nathan needs surgery. He will probably have it very soon. The problem is that the remaining piece of tumor is in a very difficult spot and looks to be very difficult to resect. We would really like to take him to New York for the surgery but it will be difficult to get our insurance to cover it - impossible probably in the time period we are talking about. The surgeon in New York is the best at removing neuroblastomas and probably does more than any other surgeon and does the cases the other surgeons think they cannot do. Luke and I will try to meet with his surgeons in Colorado Springs on Monday to sit down and see what they have to say. It is unlikely we will have them do the surgery. They already had their chance but we do ned to talk to them anyway to understand more about what is going on. I suupose we may have the surgery in New York even if we have to pay for it ourselves. I don't know. How are you supposed to make these kinds of decisions about your child's life????

We don't know how this surgery may affect the antibody trial. We have sent off an email trying to figure that out. We are still working on insurance for that. If it is deemed experimental then we probably don't have much of a chance.

Somewhere in all this radiation needs to take place.

Oh yeah - and his tumor did light up on the scan and there is still a spot in his facial area that is kind of a mystery.

So - after all this I am the most stressed I have probably been ever in my life. I hope we get a few answers tomorrow because this weekend will be nothing but stressing over all of this without being able to do anything about it.

Tomorrow we head back to the Springs. We have a lot of cleaning and packing which I thought I could do today but couldn't. We are trying to get back to Colorado Springs before the end of the business day to deliver nathan's MIBG scan to his doctors.

So that is the update. I hope the next one is better.

Tuesday, October 28, 2003

Tuesday, October 28, 2003 8:19 AM CST

Susan here..

Nathan went to the clinic yesterday and his counts are still good. His hemoglobin (red blood) was down a little. It seems to be bouncing back and forth while letting his marrow continue to produce white clood cells and platelets and that is just fine. He has been eating a little better and so as of a few minutes from now he will be off the supplemental nutrtion and so we will see how that goes. He doesn't need to go back until Thursday.

We are working on the insurance thing. Right now we are tentatively scheduled to be in New York on Nov. 17. It might have to be moved up a week. We will be switching to an insurance in January that will cover it and so if our insurance will not cover it we may pay out of pocket for the rest of this year depending on how much it is. It is frustrating to make financial decisions about your child's life.

We are also still figuring out if Nathan needs surgery and if he does it will need to be done ASAP. We feel that if he has another surgery it needs to be done right and so we may want to take him elsewhere for that. Potentially another insurance fight.

Basically we have a big time crunch for all of our decisions and it is very stressful. We still do not know yet if Nathan will have the MIBG scan on Thursday. That will be decided this morning most likely.

Luke and Julia will be heading home Wednesday afternoon to finish getting the house ready for Nathan. Nathan and I will return Friday or Saturday.

So - that's the current scoop. We'll update again soon.

Sunday, October 26, 2003

Sunday, October 26, 2003 1:01 PM CST

Susan here...

Nothing new today - be sure to check journal history for the latest update.

I just wanted to share what we have been up to this morning. Go to the link below.

 

Saturday, October 25, 2003

Saturday, October 25, 2003 10:19 AM CDT

Susan here...

Well - our car is working now so that is a relief. It had to be towed to a shop and a new battery put in. We are happy that it was a simple as that.

Nathan's counts were great yesterday. It has been over two weeks since he has had a transfusion and it doesn't seem that he will need one. We found out that Nathan could definately do radiation therapy in Colorado Springs. We will probably head home next week.

We have been looking into antibody therapy for Nathan in New York City. We found out late yesterday afternoon that they will accept Nathan. They would want him there in 3 weeks or so and that is where it gets difficult becuase we need to convince our HMO to pay for it. It is the only place they are doing this study and it is FDA approved but they don't even take our insurance there and so it is going to be difficult with our time frame to get approval. We also need to make a decision about the MIBG scan he is supposed to have next Thursday because he would have to do that scan in New York and we wouldn't want him to repeat it that close together.

Monday morning Nathan's doctor will make some calls for us and he will also try to get together with the surgeons to figure something out about the remaining piece of tumor (which has shrunk but is still there).

This weekend we will just be hanging around. Luke and Julia will most likely go home midweek to get the carpets and ducts cleaned and then Nathan and I would come home next weekend. We'll see if any of this changes...

Friday, October 24, 2003

Friday, October 24, 2003 9:19 AM CDT

Susan here...

Nathan had his cat scan yesterday. They made him drink 12 ounces of contrast and he threw it up about 3/4 the way through. Fortunately there was enough in him for the scan to work. The cat scan will be sent to Colorado Springs for his doctor and the surgeons to look at to decide if he should have another surgery. Next Thursday he has the MIBG scan. That is the scan that shows active neuroblastoma. We are a little concerned because Nathan is having leg pain and pain when we pick him up just like he had before he was diagnosed (due to the cancer in the bone and bone marrow).

We are still determining if he can have his radiation in Colorado Springs. If he can, then we should be able to go home next weekend or shortly thereafter.

Just to make things interresting for us - our car will not start. It is in a small parking garage under the building. It should be fun trying to do something about that.

Nathan is off to the clinic this morning for bloods counts and then we will be trying to get the car fixed. One of us may go to the Springs this weekend depending on what happens with the car.

Wednesday, October 22, 2003

Wednesday, October 22, 2003 10:34 AM CDT

Luke here...Sorry about the lack of updates. We haven't updated since Sunday. The weekend wrapped up pretty well. Nothing exciting except for a trip to Greeley to see Susan's brother. Monday I returned to work. We lack a broadband connection in our apartment which is essential to my being able to work remotely. It turns out I can use the network at the foundation house though, so I've spent most of my days here in the communal area of the foundation working. It is going okay. Nathan had an exam at clinic on Monday afternoon. His counts were very good. His ANC rose to over 3000 without any help from neupogen. The really surprising thing is his platelets. It has been 11 days since his last platelet transfusion. After he burned off the transfused platelets, he hovered in the mid-20s. Twenty is the cutoff for transfusion we are using right now. On Friday he was up in the high 20s so it was clear that his marrow was creating some platelets. Monday he was up to 40 so he is doing great on that front. His hemoglobin is a little low and bordering on the need for transfusion. I think he well get packed red cells before the weekend. So far his need for transfusion has been very little so he is doing awesome.

On the planning front we are still a little up in the air. He will have a CT scan of his abdomen on Thursday to get a new look at the remaining piece of tumor. we will hopefully have a MIBG scan next week to determine how much disease remains in his body after transplant. We are still working on details of future treatment. We are hopefull that once he gets his MIBG scan next week we will be able to move home to the Springs.

He has an appointment this morning. I'm going to try and do double duty of watching Julia while she plays here at the foundation house and working at the same time. We'll see how that goes. If anything interesting comes out of today's appointment we will add to this entry.

Thanks for reading.

Sunday, October 19, 2003

Sunday, October 19, 2003 7:30 PM CDT

Susan here...

Nathan has been feeling ok this weekend but has been extremely cranky. He seems to be have some emotional problems. Who can blame him though. Yesterday Grandma Kathy left around noon and Nathan went to bed but didn't nap. By bed time he was a wreck and having huge fits over everything. This upset Julia and they both were upset when they went to bed and both slept horrbly. We seemed to be up every hour last night.

Today we took a field trip to go to my brother's house in Greeley. We figured that was a safe enough environment for Nathan. It was nice to get out of the house. Unfortunately Nathan was throwing lots of fits and whining a good part of the time. Both kids slept in the car on the way home at least. We have had a good evening and Nathan has been informed he can't run around in the dark playing unless he promises not to have a fit at bath time. We'll see....

Tomorrow Luke is going to try to go back to work - probably at the offices of the foudnation that owns the apartment. In the afternoon Nate goes to the clinic for blood counts. It should be interresting to see how his counts are doing after the weekend. We are planning on making lots of calls to figure out some things. We'll let you know when we know what is next for us.

Friday, October 17, 2003

Friday, October 17, 2003 7:30 PM CDT

Susan here

Yesterday was a clinic-free day. Luke and I took Julia out in the morning to the mall and to lunch. It was nice to spend time with her like that. Nathan stayed home and played with Grandma Kathy. He spent the whole day in his pajamas and had a good time.

Today we all headed off for the clinic this morning. Grandma Kathy watched Julia while Nathan Luke and I went back to the exam room. Nathan's counts were about the same as Wednesday. His platelets actually came up a little so Nathan did not have any transfusions today. We brought Julia with us so she could have a flu shot. She did pretty well with it. She got a beenie baby when she was done and is currently hugging it and reading.

Nathan felt really good today and played outside some and also ran around plenty. We bought the kids playground balls that look like pumpkins and they were a hit. Right now he is in the process of turning off all the lights so he can look at a fake jack'o'lantern we bought. Real pumpkins have way too much mold so we have the plug in kind.

As far as what is next...we are still gathering information. We are hear through next week for sure. They are still figuring out if we can do radiation here or in Colorado Springs. We are also looking into a study in New York for Nathan. He will probably have a cat scan next week to see what that piece of tumor looks like.