Monday, January 31, 2005

Monday, January 31, 2005 8:40 PM CST

Hello

There is really nothing to update but I thought I would anyway. I have heard nothing more from NY and so am just assuming all is well.

We had a relaxing weekend. Sunday we woke up to quite a bit of snow. Luke and the kids had fun playing outside in it.

Today it was still snowy enough that swimming lesson and preschool were cancelled. I took the opportunity to just stay home all day. I enjoyed it, though Nathan kept asking to go do something fun. They did go outside and play in the snow a little.

As far as medical things...I think the next thing will be a routine clinic visit sometime in February.

So - that's it from here. Take care!

Wednesday, January 26, 2005

Wednesday, January 26, 2005 12:35 AM CST

Hello - I really meant to update before now... We have been so busy - in a good way. This past week was spent getting ready for Julia's birthday party. Sprinkled in between was some house projects and a half day spent in bed sick for me and another for Luke and so by Saturday we still ahd a lot of work to do. Fortunately my friends Tonya and Linda came to the house Friday morning and cleaned with me!

Julia's party went very well and it seemed everyone had a good time.

This week the kids have had swimming lessons twice. Julia is afraid of jumping in and so has been a little reluctant about the lessons. She seems to have fun while she is in them. Nathan loves the the lessons and is doing a good job trying to put his face in the water.

Our practically new van is in the shop with a problem. That is frustrating. Especially since the backup vehicle had a sevice engine light on it. I think we have fixed it and hopefully the van won't take too long. It is not very fun cramming us all into a 2 door car.

I went to the dentist yesterday. Lots of my old fillings need to be replaced. I am not looking forward to that. Nathan and Julia go to their dentist tomorrow morning. It will be Julia's first visit. I am going to have Nathan go first and let her watch. I dropped off a copy of the Children's Oncology Groups long-term effects guidelines on teeth with their dentist yesterday. He doesn't belive that his treatments have caused all his cavaties. I wanted to make sure he know what kinds of follow-up care and after effects are commen with cancer kids. If he doesn't respond well to it then I guess I will have to find another dentist. We would have to go to Denver to find a dentist with some experience with chemo kids.

This weekend we have no plans - which is the first for a while. It will be nice to relax a little. We still need to put our Christmas boxes back into the crawl space so that is probably on the agenda.

I emailed Nathan's doctor in New York to see if there were additional tests being performed on Nathan's bone marrow. He is looking into it. Usually they do a very sensitive test on the bone marrow to detect microscopic disease. I will let you know if I hear anything. It has now been three weeks since we started the tests and it is frsutrating that we still don't have all the results. I will probably push off the next round of scans until mid to late April. I think we should get 3 months without thinking about the tests. Actually, we will probably do the urine test again in a few weeks since we have been doing that between scans. That one is not as nerve-wracking as the others. I wish we could just do urine tests every 3 months and fulls scans every 6.

Well - I think that is all for the update this time. I will try to get a new picture of Nathan up on the page and some new photos in the photo album too.

Wednesday, January 19, 2005

Wednesday, January 19, 2005 8:37 AM CST

Hello,

Sorry for not updating sooner. We have been pretty busy.

We had a good weekend in the mountains. Julia has been fighting a stomach bug and it reared up again and Nathan got it too. They didn't feel bad until Saturday night/Sunday morning and so we had a good time until then. They got to go sledding down the hill behind the house. It was fun but lots of hard work to haul ourselves , the sled and the kids back up the hill. The snow was about 3 feet deep - Nathan figured out that he could sort of crawl on it but stepping on it just burried him.

We came back Sunday afternoon and are busy with some home improvement projects and getting ready for Julia's 3rd birthday party this weekend. She has been talking about her party for many months and wanting all her friends to come. Well, many of her friends moved away in the last few months, but most of her remaining friends and some new ones are able to come and so she should be very happy. Between the kids and their parents this house is going to be packed. We will be doing some art projects at her party.

We have had no results from the bone marrow biopsies yet. I If don't hear anything today I will call, but the final results will still be another week or so I think.

We are off to swim lessons today and have many other appointments and plans in the next few days so I will just put an update on the top of this page if I hear anything about the bone marrows.

*** Update: Pathology reports on the bone marrows from our home hospital look good. We will have to wait awhile for the more detailed tests that are ran in New York, but so far the good news keeps coming. ***

Thursday, January 13, 2005

Thursday, January 13, 2005 7:56 PM CST

Hello,

Well, we got bone marrows done this morning. We warned Nathan last night that he could not eat or drink when he got up. He had a good cry about it but then this morning he was as happy as a clam and didn't ask about it.

He did great getting his IV and the procedure went well. Afterwards we went to a restaurant for lunch and he was happy and feeling great. No complaints of pain, whatsoever.

Luke came with us this time and Nathan as so happy to have him there (as was I).

While we were there (at the hospital PICU) one of Nathan's doctors told us that there was a newly diagnosed neuroblastoma family in the PICU and asked if we would talk to them. We were more than happy to and talked to the parents for a few minutes. Their little boy is 17 months old and already has some feeding and growth issues. In fact, this little boy has had numerous tests at MAYO clinic and through all that no one ever saw this huge tumor in his chest and abdomen. Anyway, we were glad to be able to be proof that kids do recover from this beast. We also offered up what advice and knowledge we had. It was kind of chilling to see the parents' shell-shocked faces and remember what that was like.

Tonight I went to Nathan's future elementary school for an information night on the kindergarten program there. I have to admit that I got teary eyed as I walked around the kindergarten rooms. When he was diagnosed one of my greatest wishes was that he live to be able to go to kindergarten. We still have many months to go, but the reality of him being able to attend gets more possible every day that passes.

Tomorrow we are headed up to Grand Lake (in the Rocky Mountains) to spend the weekend with my brother at his house there. We are really looking forward to it! Hopefully we will all be healthy enought to enjoy it. Julia has been fighting off a bug. She has been complaining about having a stomach ache for a week or so. Then, this weekend she had problems with her "girly parts" and has been a little lethargic. I took her to the doctor on Monday and they checked her for a urinary tract infection, which she does not have. The Nurse did say her gut seemed overactive and she was probably fighting off a virus. Well, last night she threw up aroound 2:30am. I had served a dinner that was not very stomach-friendly and I think that did her in. We finally got her cleaned and settle back in and I tried to go to sleep and was in great pain because I spent too much time scraping wallpaper off a wall and my neck and shoulders were killing me. I finally fell asleep just before 4:00, when Nathan woke up and had wet his bed and was trying to clean it up. Luke took care of that and we finally got a little more sleep. I woke up with a cold and unable to move my right arm and neck. Fortunately the arm and neck are much better. So, I am praying no one else gets this stomach bug and we all get some sleep tonight so we feel well this weekend.

When I took Julia to the doctor, while we were waiting in the exam room she said, mumbling, which she does when she is a little hesitant to say something, "in that book the little girl gets cancer" She is talking about a book we have at home. So I asked her if she was worried about that and she said yes. I just about cried to think she is worried she has cancer because she is at the doctors. I suppose it really is a healthy response, but struck me very sad.

I think we will have preliminary bone marrow results early next week, and final results in aabout a week to 10 days. I will let you know when we hear something.

I hope you all have a good weekend!

Monday, January 10, 2005

Monday, January 10, 2005 2:30 PM CST

Well - no more scan results yet. I will update later today if I hear anything.

Nathan and Julia had swimming lessons today. They both did really well and enjoyed themselves thoroughly. They are learning to put their face in the water and to jump into the water (with the teacher catching them). It was fun to watch them.

We had a good but busy weekend. We had dinner at friends houses both Saturday and Sunday nights. Between that, church, laundry and housecleaning, that was pretty much our whole weekend. Oh, and we did get the Christmas lights off the house. We have been having highs in teh 50's and so it has been nice to do outside work.

I haven't heard for sure if Nathan's bone marrow biopsies will be on Thursday. I plan to ask the doctor when he calls with scan results.

I have completed the December family web page. See the link in the middle of the page or at the bottom.

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Update - MIBG scan is unchanged. If the NY docs were reading it they would say no sign of disease. The doctors here say stable. There is a spot that lights up around his surgical site. This has been the case for the past year and the experts in NY say it is just due to the damage from surgery and not cancer. The CT scan shows nothing as well - so for us that means no cancer detected.

The bone marrows are on for Thursday morning. We will get preliminary results fairly quickly but they are sent out to a lab and so it is a week or so until final results on those.

Friday, January 7, 2005

Friday, January 7, 2005 8:40 AM CST

Well, scans are done but we have no results yet.

The IV insertion went really well and got in on the first try. We checked Nathan's blood counts and he is a little anemic. He had been in the low normal range previously. I didn't get to talk to the doctor about it though.

We had the MIBG scan yesterday morning. Nathan did great in it - it took longer than normal. Different machines and different techs seem to do the test at different rates. This time it was 2 - 25 minute scans. I messed up and brought the wrong kind of DVD that didn't work in the player I brought and so he had to just lie there. He is awesome! I couldn't really see anything on the screen but I didn't really try to look either.

After waiting for about 20 minutes we were told we didn't have to redo the MIBG scans and so we were happy about that. We went off to have lunch and then went to Toys R Us and looked around and I had Nathan take his oral contrast. He had to take it twice, 1 hour apart. IT is milky looking stuff and he used to HATE it, but now could care less about it. I just fill a syringe and squirt it in his mouth over and over again. He did it really well and it was no stress at all.

He had his CT scan and this time there seemed to be a little too much phoning around and they were asking me lots of questions about where his tumor was and so I am extremely nervous about the results. I am hoping to hear something fairly early on today. Meanwhile we have a playgroup at the swimming pool and I am going to try to make myself go even though I am not mentally up to it.

I will update when I know something.

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Update Friday evening:

We have one scan result. The CT scan is perfectly fine. The MIBG scan report is not in yet. I am feeling MUCH better. We still have the bone marrows next week but I am just happy knowing that at least there is not a tumor in his chest. abdomen, or pelvis, which were scanned.

It is a little unusual for the MIBG scan not to be in yet. I had scenarios running around my head today in whcih the doctors had the results and were trying to figure out what to tell us!

Anyway - I think we can relax enough to enjoy our weekend and we will find out the MIBG scan results on Monday.

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Tuesday, January 4, 2005

Tuesday, January 4, 2005 11:09 PM CST

Well - tomorrow we begin the now drawn-out scan schedule. Nathan asked me right away how they would give him medicines and so I told him he would have an IV and so he got upset about that. That was yesterday and he hasn't brought it up today but wanted me to tell him the whole schedule of things.

We would be in New York right now if he didn't get a HAMA. I am so grateful that we are home! Nathan got to go to preschool today after an aborted attempt yesterday when we discovered it was a teacher service day. Since I had expected to be in NY I hadn't fully paid attention to the schedule.

I am working on the December pictures and hope to have the website updated soon. There are so many!