Friday, July 30, 2004

Friday, July 30, 2004 8:04 AM CDT

Hello - hope all of you have had a good week. We have...nothing too exciting going on. Yesterday we went to the county fair. The kids had tons of fun looking at all the animals. They also had some tractors from a dealership there and they both sat in many of them and thought they were very cool.

We had to say goodbye to some very good friends this week who moved away....Daelyn, Eric, Julia, Bo, and Catherine...we miss you already!

A little insurance update....things are finally moving in the right direction and we are in the system and there is someone at the insurance company working on getting the antibodies approved. We also got a glimmer of hope that even if the insurance company itself won't pay there is still hope..I won't elaborate but we are feeling much more positive. I may try and schedule the kidney function test for the week before we go to New York. We leave for NYC on Aug 14. We will be at the Ronald McDonald house this time. I will post the address because Nathan really doesn't like staying there and receiving some cards while he is there might perk him up.

I found out his preschool starts a week later than the regular school so he will miss the first 2 weeks of preschool. I am a little upset about it because no one told me and I might have arranged some things differently if I had known this a month ago. I am sure he will adapt but it will definalte be a harder adjustment for him coming into it with all the other kids established already.

My brother Aaron is coming in today to visit for the weekend. My brother Jason will come down on Saturday. It has been a few years since my immediate family has all been together and so we are looking forward to our family weekend.

On Tuesday, Luke and I leave for Cancun. We will be back on Saturday. We cannot wait to just lay around by the beach and pool for a few days. I am sure it will not be nearly long enough but will hopefully recharge us a little bit.

Nothing new on the medical front. I still haven't heard the results of his immunity tests and I just need to call and ask - so I will try to do that sometime today.

Thanks for reading...sorry the updates have been farther apart lately. They will pik up while we are in New York.

Sunday, July 25, 2004

Sunday, July 25, 2004 5:42 PM CDT

Hello - sorry for the long gap in entries. Luke and I just got back from the Neuroblastoma conference in Chicago.

My parents arrived on Tuesday last week. On Thursday morning Luke and I headed off to Chicago. The conference was very interresting and informative. We also got the chance to meet lots of families and see some friends I have made along the way.

Last night we were able to have a very fun dinner with some friends and family in Chicago. Thanks to you all for joining us!

So - back to Nathan which is why you are reading this....he is doing fine. He has a little cough and had some bowel trouble last week that seems to be resolved now. He won't be having the kideny function test that he needs next week due to several people dropping the ball and not getting authorizations and scheduling done. Insurance changes the next week and the newly merged company had not even gotten the new people in the system so we can even get an authorization at this point. I can't believe a huge HR department could be so unorganized, especially when they are preveneting their employees from getting medical care! Anyway - I don't know when he will get anything done for the kidney function - maybe we will do it in New York.

This week does not hold anything medical for Nathan (at least not at this point). Well, actually Nathan's oncologist thinks we could repeat the urine test he recently did but I guess I am not leaning towards that because it is just an unneccessary blood draw if we get the same results. I am also getting tired of all of this and when it comes to a struggle to get things scheduled, authorized, figured out I am just surrendering on this one. We'll see if his oncologist calls to figure it all out.

Monday, July 19, 2004

Monday, July 19, 2004 11:29 AM CDT

Hello everyone,

We had a good weekend. On Saturday we got a lot of yard work done while the kids played outside and then had dinner with friends who are moving. The barbeque on Sunday was lots of fun (for the kids anyway). They had a large inflated slide and bouncy house, a fire engine, teepees, horses to ride and a petting zoo. The children had much fun with all. Julia especially loved the slide and they both adored the horseback ride. There are some picture on the photo album page.

     

(read on for more text after pics)

Medically all is stable around here. Nathan and Julia have been having so much fun playing with each other later. I was going to run some errands this morning, but the two of them were playing so nicely I just stayed home. It is so wonderful to watch them play together.

I want to thank everyone who continues to sign the guestbook. Sometimes it feels like a one-way conversation around here so we appreciate the occasional note from those who are reading.

Friday, July 16, 2004

Friday, July 16, 2004 1:52 PM CDT

Yesterday's clinic visit went fine. The creatine clearance test had mixed results and so we will be going to Denver to do a GFR test which is a nuclear medicine test for kidney function. Nathan previously had this same test before transplant. It involves some timed blood draws and other that him getting an IV not a big deal. We are trying to schedule that for the last week in July.

Nathan's weight is stable but lower than it was when he was on the steriods. I think we will just keep an eye on it. He seems to be eating fine. His blood counts were also stable. He will go back in a month! He did have blood drawn for an immunity panel so by early next week we shoudl have the results and see how is immune system is doing and also if he retained his vaccinations.

Today we have been doing projects around the house...we are so far ehind on things having been gone so often. Tomorrow will also be spent that way and on Sunday we plan to go to a Candlelighters barbeque. Candlelighters is a childhood cancer organization. This will be the first even we have done with them as I have tried and tried to get on their mailing list to no avail but this time I saw a flier at the doctor's office.

On Tuesday my parents arrive and will stay for about 3-4 weeks. On Thursday, Luke and I fly off to Chicago for the Neuroblastoma conference. We are hoping to see a hand full of friends the one night we have off. We won't be able to see everyone with the busy schedule.

Wednesday, July 14, 2004

Wednesday, July 14, 2004 3:47 PM CDT

Hello - not too much is going on.

Nathan has been feeling a little under the weather but nothing I can put my finger on. I am happy he is going to the clinic tomorrow.

We are currently running around in circles to find out if our new insurance will cover the antibody study in New York. The way the policy reads, clinical trials will only be covered if it can be proved the patient has less than a year to live. We are having to wait until Nathan is in the system and then have NY generate the pre-authorization to then find out if it is approved or not. We do not yet know when he will be in the system. We haven't even discussed what we will do if it is denied - whether a few more rounds will make a difference to Nathan's prognosis or not.

Speaking of prognosis, I was recently asked if it has changed since diagnosis. I guess the answer is, a little. There was a chance that Nathan would not have responded to chemo. Since he did, his overall prognosis went up, but not significantly. There are lots of different statistics thrown around in the various hospitals and clinics and these statistics include children of all ages and with tumors of different biological factors. These biological factors really determine if a child will make it - they are being studied, of course but there is still a long way to go. Age is also a significant factor...infants and young babies have a much better outcome. All that said - one doctor told me that 50% will relapse. I would assume this 50% includes some children both much younger and older than Nathan so who knows what that means for him. Relapse, means eventual death about 99% of the time. Of course - not if a new therapy is discovered before then. I hope this all didn't sound too harsh and clinical and answered some questions you may be having. In my mind it is clear cut - Nathan will live or not and that is yet to be determined and all the statistics in the world can't tell us which it will be and so he is doing well now and that is what I have to keep reminding myself.

OK - well - I think I have reached my journal limit today. I will update after tomorrow's doctor's appointment.

Sunday, July 11, 2004

  Sunday, July 11, 2004 7:48 AM CDT

Good morning! We made it home yesterday. The weather was much better and we made it home and hour faster than on the way out...plus we gained and hour in time so we got home a little before 6:00 pm. The kids were amazingly good once again.

Today Luke will STILL be working (he worked every single day we were in Illinois and all the days preceding) and the kids and I will clean out the not-so-new-anymore van and we are going to a birthday party later in the day.

Tomorrow is Luke's birthday so the kids and I will go get him some gifts. Nathan next goes to the doctor on Thursday. We never heard anything about the kidney function so I am hoping no news is good news.

A special "Happy 70th Birthday!" to a very special person to us, my uncle Bill Dick. We couldn't make it to his big birthday bash last night in Washington DC and we missed seeing him and all the other people we love who were there.

Wednesday, July 7, 2004

Wednesday, July 7, 2004 1:25 PM CDT
Hello!
We had a very nice 4th of July evening. We had a cook out and then went to see the fireworks. Nathan really enjoyed them. Julia did too, but not as much. She thought they were a little loud. At first she kept falling over (in fun) every time she heard one as if it knocked her down. Nathan just leaned against Luke and screeched and giggled.
It has been raining alot but we have gotten out here and there. Luke's parents live on many wooded acres of land with lots of flowers and grasses. The kids especially love picking the black raspberries right off the bushes and eating them.
Yesterday we went to the John Deere store and the kids got some toys and we walked around looking at the tractors. I will put some pictures up later.
No word from New York so that means no HAMA. I am also waiting to hear about Nathan's creatine clearance test he did last week. I talked to his oncologist today about something else and he is going to try to get the results for me.
On a personal note - I have now eaten some of my favorite "home" foods...Steak and Shake twice and Monicals Pizza once....I swear these foods are like drugs!

Sunday, July 4, 2004

Sunday, July 4, 2004 12:35 AM CDT

Happy Fourth of July!

We made it to Illinois just fine. We had horrible weather driving. The kids were very good. We are enjoying our visit so far. Right now both kids should be napping but aren't so I am kind of frustrated but they have been enjoying playing with their grandparents immensely.

We may try to take them to fireworks tonight - but not if they don't nap.

I will be trying a country delicacy at dinner tonight - fried pumpkin blossoms - I have heard about them from Luke so I am interested to try for myself. This kids think it is a funny idea to eat flowers - I bet they will get a kick out of it!

Hope you all have a good holiday!

Thursday, July 1, 2004

Thursday, July 1, 2004 10:19 PM CDT

Hello...

We are off tomorrow for Illinois. Wish us luck on the 16+ hour car ride!

Nathan went to the clinic for a blood draw to go along with his urine sample and for his HAMA blood draw. He did REALLY well for the blood draw. I think he will no longer cry even a little next time.

Afterwards we went to the ear doctor. They did another hearing test which proved to be stable. They adjusted his aides a little and he saw the doctor. Everything was fine.

We ran bunches of errands and spent the rest of the day packing. No more doctors appointments until two weeks from today!!! Nathan is on accutane until Monday and then gets 2 weeks off of that.

Well - time to get to bed as we are getting up to leave at 4:00 am!