Wednesday, June 29, 2005

Wednesday, June 29, 2005 3:37 PM CDT

Nathan's surgery went fine. He had a bit of trouble afterwards being quite nauseous and throwing up so we stayed in recovery for a while. He is a little sore but no big deal. He is currently playing and just a little bit tired and emotional.

He is definately worried about what the tumor means for him. He asked me what would happen if they didn't do chemo and he also out of the blue started asking questions about what people look like in heaven. When he went to his babysitter yesterday the first thing he said to her was that he has another tumor.

Tomorrow around noon we will hook him up to fluids to hydrate him for chemo. He has a little backpack he can wear so he can still move around the house with it. Friday he will go to the clinic and then over to the hospital to start chemo.

My sonogram went OK. This little baby is laying facing down on its knees with its head down to knee level. So we could not get a look at its face and we could only see the heart through the back and so not a clear look at its anatomy. All its measurements were right on track and the parts we could see looked good. When I go back (in 4 weeks or whenever we get back from NYC) they wil do another one. We did not find out the sex even though with its bottom in the air it would have been really easy. Makes me wonder if it is a girl if we didn't even see anything accidentally. It was really fun to see the baby and it was pretty sweet laying like that. Julia slept like that for a few years and we still occassionally find her asleep on her knees with her bottom in the air....very cute.

I will most likely update again on Friday.

Monday, June 27, 2005

Monday, June 27, 2005 7:50 AM CDT

Update Tuesday, June 28, 2005

Nathan's port surgery is scheduled for 7:30 tomorrow morning. He should be home by early afternoon.

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Monday, June 27, 2005 6:23 PM CDT

Ok - well we have a plan in place.

Tomorrow Nathan will meet with the surgeon here and town and Wednesday morning he will have a port placed. A port goes under his skin and then is accessed by a special needle when they need to use it. This needle can stay in for several days. When not in use he can swim and bathe and play as usual. We felt this was a better option for Nathan than having a broviak. He may still need a broviak later if his disease progresses. The surgery is out-patient and he will come home afterwards.

Friday morning he will go into the hospital and start chemo. He will have chemo for four days. For those interrested he will be having Vincrsitine,high-dose Cytoxan, and Topotecan. He is only doing it in the hospital because otherwise he would not be able to start chemo until Tuesday in the clinic and we did not want to wait that long to begin.

This is strong chemo and he will lose his hair and his blood counts will bottom out. We expect he will need blood and platelet transfusions and he will be neutropenic (no/low white blood cells) for several days.

When his counts recover from chemo we will travel to New York and he will have surgery. I would imagine they will do some scans preceding surgery. They will do intra-operative radiation therapy during his operation where they can directly radiate the area.

At this time I do not know whether or not they will take his kidney out. I imagine they will not make that decision until we are in New York.

What happens after surgery depends on many factors and so after surgery we wil reevaluate his disease status and go from there. With relapsed neuroblastoma there is no standard plan to follow. Decisions are made and changed on a daily basis.

We have told Nathan. He took it really well. He wanted to know why the tumor grew again and he had some questions about the port. He then asked to get back to watching Scooby Doo and I am sure he is mulling it over with more questions to come. In fact - as I write this I hear him asking Luke more about how the tumor grew. So - we will just try to answer his questions as they come. We hope there will not be too many that we will have to answer by telling him we don't know - because that stresses him out - but as I just wrote - there is alot we won't know. Julia was concerned about who was going to take care of her and we reassured her that when possible she would have either her mommy or daddy home with her.

So - we are ready to start the battle. We feel very confident in the doctors' decisions and we know we have a good team of doctors in place.


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We have actually had a good weekend. We knew that there was nothing to be done until today and so we just had a normal weekend. Friday night Luke and I had already planned to get a babysitter and go to see Star Wars and we decided that we should not change those plans. Though I certainly was thinking of things during the movie it was a good diversion.

We did errands and church and just had a normal good weekend.

Ok - here is the very preliminary scoop. I just got an email from the doctor in New York saying they recommend one round of chemo and then surgery. He said he sent the details to Nathan's local oncologist. I will call him this morning and get him to check his email and then find out the details. I am assuming we can do the chemo here at home.

I will update this later with more details when I get them.

Friday, June 24, 2005

Friday, June 24, 2005 1:54 PM CDT

Well - we got bad news today. Nathan has relapsed with a 2x2x3 cm tumor at the site of his original tumor (on his right kidney). The good news is that his bone marrow is clean and his MIBG scan shows no other cancer.

We are not sure what the next step is. His local oncologist thought that surgery would be the first step. We have a call into his doctor in New York to see what he thinks we should do. We hope to travel to New York very soon and get moving on treatment.

We have not told Nathan yet and we will not tell him until we have a plan of action.

Keep those prayers coming.

(added 1/10/11..the pictures that follow were taken by Tammy, who so graciously offered to take Nathan and Julia for the afternoon after we got the bad news to let us digest it and the kids have some fun)

Thursday, June 23, 2005

Thursday, June 23, 2005 3:36 PM CDT

Scans are done. We got the preliminary bone marrow results which came back negative (good). His MIBG scan had a spot light up. The radiologist came and looked and said it is in the same place he has always had some "uptake". She was going to compare the intensity to the last scan. He also had a cat scan and so if there is something there - I guess they will see it. I am trying not to worry about it too much.

Poor Nathan threw up during the cat scan. They said it was because he had food in his stomach. Well - he hadn't eaten in two hours but he had to eat a meal in between the two scans so I don't know what they expect us to do.

We will update when we get more results. I don't expect any until tomorrow afternoon at the earliest and more likely Monday afternoon.

Tuesday, June 21, 2005

Tuesday, June 21, 2005 7:11 AM CDT

Good morning.

Scan week begins today. Nathan will have a bone marrow aspiration and biopsy at 11:30. Tomorrow he has an MIBG injection and Thursday he has an MIBG scan and CAT scan. Hopefully they will not have to do the additional MIBG scan Friday morning. If he has too much of the radioactive isotope during his first scan they have to rescan. We have found that a little laxative helps prevent this from happening.

I have found wildly differing opinions about me being around Nathan while he is "radioactive" but have been comfortable with the explainations that say it OK. It has a very short half-life and I really just need to stay away from his bodily fluids.

Scan time is always stressful. Nathan is getting old enough to understand why we are doing the scans. Yesterday I told he might be having the bone marrows today (we didn't know for sure until 3:00 - isn't that lovely?). Later he started getting stressed out about not knowing and was saying "Mommy, but they have to do my back bandages tomorrow!". It was really sad to see him worry. Back bandages are what he calls the bone marrows since he doesn't remember anything - just comes out of there with bandages on him back. Recently he has had me explain to him what exactly they are doing to him. I have had to delicately explain that they stick a large needle into his bones!

I wanted to write about his birthday since I haven't gotten around to that yet. He had a John Deere theme that he had picked out from a catalog. I went to the grocery store with cake toppers in hand and they made a really wonderful cake with a farm scene on it. He was very pleased with it. His party was at a place that has a big room full of inflatable jumping things and slides. He and his friends had a blast jumping around. After jumping we retired to the party room and had cake and presents. All in all - it was the party he had wanted and he was very pleased. Afterwards we went out to dinner with my brother and his family.

Nathan has been telling everyone since then, "I'm Five now!".

We bought little bikes for Nathan and Julia. Julia seems pretty much unable to learn. Nathan is doing well - but he doesn't like when things are hard for him. He gives up really easily. So it is a bit of a challenge.

That about sums up what we have been up to. Please send all your prayers and positive thoughts our way for CLEAN results while we test this week. Nathan's friend Joshua, in Kansas, is also testing and scanning this week so please send some his way too.

Sunday, June 19, 2005

Sunday, June 19, 2005 12:49 AM CDT

Happy Father's Day to all the dads!!!

I want to take the time today do tell you all what a wonderful father Luke is.

Since I am the one who writes this journal, you don't hear very much about Luke and all that he does for his family.

Luke is a very loving father. He constantly tells the kids how much he loves them and gives them lots of hugs and kisses. When they cry out for a parent it is equally as often "Daddy" as it is "Mommy". He is fully involved as a dad and caregiver. He and Julia have a special bond from the times they spent together while Nathan and I were in New York. She adores her daddy and I love seeing their special relationship.

Part of the reason Luke is such a wonderful father is what a wonderful husband he is to me. Our children see that he is loving,considerate and helpful towards me and that is a wonderful model for them.

Luke is also an excellent provider for our family. It has been extremely difficult and stressful for him to continue to work when he knows his child is sick and in pain and I am overwhelmed with it all. For him to not be able to provide care during these times has been very hard on him. His being able to stick through and provide for our family these last few years is a big accomplishment and I don't think he realizes just how proud I am of him.

I could not think of one way that Luke could be a better father. I am so lucky that he is the father of my children.

Wednesday, June 15, 2005

Wednesday, June 15, 2005 3:26 PM CDT

Well - we are home. The kids had a wonderful time but were glad to be home. We are all on Eastern time and we all awake at 5:00 am this morning.

I will put some pictures on the photo album page.

We are already busy. Nathan and Julia are at the sitters today. I had an OB appointment this morning and have been running around getting everything ready for his birthday party tomorrow. Tonight I will go to choir practice and so I am getting a sitter for Nathan and Julia. Luke is out of town until late Friday night.

My OB appointment was fine. Everything is as it should be. I can now feel the baby moving around. I have an ultrasound in two weeks - HOWEVER - Luke and I are in that minority who enjoy NOT knowing the baby's gender - so we will not be finding out if it is a boy or a girl until he or she is born.

I have no word on when Nathan's bone marrows are yet. I hope to know for sure in the next few days.

I can't believe Nathan will be FIVE tomorrow. On the airplane home I had Julia in the bathroom and the stewardess talked to Nathan and found out his birthday was coming up. When the plane was landing the pilot announced to everyone that his birthday was on Thursday and everyone clapped for him. He was very pleased. I couldn't help thinking to myself what a miracle it is that he is turning five and what an accomplishment it is for him to have gotten through all he has and he deserved the applause! I am grateful beyond words that he is turning five tomorrow and doing so in good health. On his third birthday he had chemo. On his fourth birthday he had antibodies. On his fifth birthday he will be having a party with his friends - bouncing and running around. What a blessing!

Thanks everyone for all your birthday greetings. I will be showing and reading them all to Nathan.

Saturday, June 11, 2005

Saturday, June 11, 2005 3:21 PM CDT

We are having a fun time in Hilton Head. Nathan particularily loves jumping in the waves.

Nathan's scans are set for Jun 22 and 23. His bone marrow aspirations still need to be scheduled but will hopefulyl be on the 22nd.

We had lunch at the Salty Dog Cafe yesterday. Click
here to see us on the webcam. You may need to click on show picture and then pick 12:42 and click on that to see the picture.

I will update again when we get home.

Monday, June 6, 2005

Monday, June 6, 2005 5:49 AM CDT

Quick journal to say that the kids and I are off to Hilton Head Island this morning to visit my parents.

Nathan saw his oncologist and we decided he will have scans the week of June 20. I will post more details when we have them.

Hope everyone's summer is getting off to a good start!