Thursday, October 28, 2004

Thursday, October 28, 2004 6:25 PM CDT

Hello - well I thought today was pretty bad, but Nathan told me a few minutes ago that he had a really good day.

His pain was REALLY BAD. He screamed out in pain for over a half hour and then grunted in pain for another hour. It hasn't been that bad for several rounds. He was really wiped out after that and I was a mess and the combination was not good and I took out my frustrations on him by not being very patient when he was very cranky and screaming on the way home. A while after we got back to the room he told me "Mommy, I wasn't being bad and throwing a fit before, I was just in pain". Boy did that make me feel bad bad bad. It is not as if I don't know that, I am just in such a bad state myself that I cannot react in a calm reasonable way to the screaming. Anyway, we hung around the room and house the res of the afternoon. I was trying to stake out the washer and dryer. Nathan played most of the afternoon and evening. He really enjoyed his playing and was pretending he was a Daddy and he had a baby he was taking care of. He told me the baby threw a fit and the Mommy got make and made a face like " " and he showed me the face and said she had one eye shut and the other open a little and his teeth were kind of bared. He is too funny. Oh, and I am pretty sure I don't make that face - I will have to ask Luke.

So - I have NO CLUE what to expect from tomorrow's treatment. It is as if we are starting over again so I guess I will expect it to be bad. I am hoping we get an early start at least so we can leave the hospital and get on a train around 1:00. We will be going to Garrett's house for the weekend and we are definitely ready for a nice break from all this for the weekend.

I may not update until Monday, I am not sure. Hope you all have a good weekend and Halloween.

(some pics from Central Park Zoo)

(Some pics of the UGLY rooms at the Ronald)

(plus my sweet boy)

Wednesday, October 27, 2004

Wednesday, October 27, 2004 9:36 AM CDT

A quick update....Nathan is having pain today. I am not nearly as disappointed as I thought. My immediate thoughts were that I hated to see him in pain, but also that I could keep doing antibodies forever if the cancer would stay away. I will update more later

**************************************

I wrote that one-handed during his treatment so I will elaborate. We decided not to pre-medicate him today. He had pain and it was pretty intense. The nurse said that at the very least it is a sign his body is working on a HAMA. So - hopefully we are on the way to one in the next few treatments. I didn't ask what to expect tomorrow. We will pre-medicate and see what happens.

We got out of there around 11:15 and I got Nathan some food. He rested for a half hour and then ate. Shortly after that he was feeling better so we went off to the central park zoo. He had a great time there and ran around laughing and playing. I put a picture on the photo page. I was so glad to see him feeling so well and so happy after this morning.

I have him in bed watching TV now and it is actually a decent time tonight.

I will update tomorrow. I am very curious to see what his treatment brings. It will be a later day because they have to draw blood and his IV is most likely not going to draw and so he will have to have a stick.

Tuesday, October 26, 2004

Tuesday, October 26, 2004 10:34 AM CDT

Hello,

Well, another easy day. I didn't see any evidence of pain. I asked him about it later and he said he had pain, so I asked him when and he said when he was asleep from the dilauded. Well, he didn't actually sleep with it, but it does make him very sleepy and he lay down. He got up and played computer games before it was possible that pain could have hit and so I just think he is trying to work it out in his head because he knows he has pain usually. We got out of there by 10:15 and we went to the park across the street and he played and chased pigeons for a half and hour and then he got some lunch at McDonalds.

The antibody nurses seem very skeptical about him possibly developing a HAMA. Yesterday they said he probably had a low-level HAMA and it would go away today. So, today one of them came in and said, "pain today, right?" and we said no so she said that it is a low level HAMA and usually Wednesday it will go away and he will have pain. I THINK if he doesn't have pain tomorrow they might consider the possibility. One of the nurses had told the team yesterday that Nathan didn't have pain, but that often on the first Monday and Tuesday he didn't. That is anything but true. So anyway, I don't know quite what to make of the attitudes but I think maybe we will have a better idea tomorrow. What a downer it will be if he has pain tomorrow!

I am not sure what we will do this afternoon. Tonight we will go to Joan's for dinner. Even though Nathan had no pain, he did have dilauded and therefore is still quite cranky! So - we will have to see what he wants to do.

Monday, October 25, 2004

Monday, October 25, 2004 11:56 AM CDT

Hello from New York,

We had a pretty easy trip here. We are having some problems with our room lock (as in the keys won't work and someone has to let us in every time) and so I think they will move us today. We also had some very loud neighbors last night. The rooms have doors that join them and there seems to be no insulation and it is as if the neighbors are standing in your room. If we move, I hope that will be better.

Nathan had a checkup when we got to the hospital and I was very happy to see that he has gained almost 4 pounds and 3 cm in height in the eight weeks we have been away. They had to rewrite for all his medications and so we had a long wait before his antibodies. He got them and we waited for the pain. We waited and played and the antibodies finished and were flushed in and I still so no signs of pain. While we were eating he told me his pain was gone and I was surprised to hear he had any at all. We need lots of HAMA thoughts and see what happens tomorrow. I can't even begin to tell you what it would mean to us if Nathan gets a HAMA. I am trying not to get my hopes up too high, and even if he doesn't HAMA the ease of the treatments like this would be fine. He ate his whole lunch and we came back and now he is running around and laughing and playing. Usually on the first Monday we are at the hospital for hours afterwards and he is in pain the rest of the afternoon and I usually give him pain medicine later in the afternoon again. What a difference!

So - all of those out there praying for Nathan, please pray that if it is what is meant for Nathan, that he develop the HAMA and this can be our last trip for antibodies.

Friday, October 22, 2004

Friday, October 22, 2004 2:11 PM CDT

Hi - There is no real news today...so I will talk about what we have been up to.

Wednesday afternoon I took the kids to a pottery painting place where a local group called Compassion for Kids was having kids paint pottery to make Christmas presents for their parents. It was a little bit hectic with me trying to help both of them at once since they are so young. They really enjoyed themselves however. We also had cake for a boy who just finished treatment.

Thursday, the kids went to daycare and she had a little Halloween party for them. Speaking of Halloween - I will put a picture of them in their costumes on the photo page. I went and voted since I will be in New York on election day.

Nathan started his shots on Wednesday. He is doing great with them. He tells me I am doing a good job with them because they are not hurting him. He is being pre-medicated and that has definitely kept him from having a huge welt, though the area is still a little inflamed and red.

I am starting to get ready for our trip. We have made plans to visit Garrett's family (one of Nathan's friends having the same treatments) north of the city on the weekend. We haven't worked out the details yet, but the plan is to stay over until Monday morning so that Nathan can trick or treat with Garrett and his siblings. I am so happy for him that he will get to trick or treat and it will be wonderful for me to spend time with this wonderful family for the weekend.

I will be putting the Ronald McDonald House address on the page if any of you want to send a card to Nathan while we are there. I will add room number information after we arrive, but if you send it without it will get to us anyway.

I will update again after we get to New York.

Tuesday, October 19, 2004

Tuesday, October 19, 2004 2:15 PM CDT

Hello!

We FINALLY have the urine results and they are normal. So - I guess we can breathe easy for about 2 months until he has scans again. Actually, We will probably wait to do scans in New York in January - so a few extra weeks to not stress about them.

We also were able to splice our phone line.

I took Nathan to the ear doctor today. The audiologist said his hearing is stable and the doctor said his ears look good. He doesn't have to go back for six months. He did so good with the testing because she did a lot of it today and to have to sit and concentrate listening for beeps for a half hour is not an easy task.

Afterwards he wanted to go to McDonalds and so he got to play in the play area. He is happily at preschool now.

That is all the new for now...thanks for checking in, and for signing the guest book.

Sunday, October 17, 2004

Sunday, October 17, 2004 11:26 AM CDT

Hello - hope you all are having a good weekend. We are despite some (not serious) challenges. Our dog, Ellie has been escaping from our yard lately and she did again while we were out at Sams Club yesterday. So - we had to go off to home depot and get materials to put down an additional fence. We did that without too much trouble but then discovered we had cut the phone line. We have a history with cutting our phone line and just paid for the last time where we did in knowingly to be able to build a retaining wall. Anyway..I shall be digging this afternoon to try to find the two ends and splice it ourselves so we don't have to pay again. Until then we can be reached on our cell phones.

Nathan was able to get a flu shot on Friday. Since it is his very first one he has to get another one in a month. They say they will have the does for him. He did very well with it. I have been telling him that on Wednesday we have to start his shot for New York again. He isn't too happy but hopefully with the warning he will not throw a fit about it when the time comes.

On Tuesday, Nathan will go to see the ear doctor and have his hearing aides checked. Lately it has seemed to us like his hearing has declined. It is not likely the case but we are curious to see what they say.

No more medical news. I will try to get to the bottom of the urine test results this week.

This afternoon the kids and I are planning to go to a Halloween party thrown by the Candlelighters (childhood cancer organiziation). This kids will get to wear their costumes and I am just so happy that they can do this together since they will be apart for Halloween.


That's about all that is going on here. I do have a request for you all...I noticed that the last guestbook message was over a week ago. Well - I am trying hard to update at least twice a week so it would mean a lot to me to see that guestbook signed as often! It makes it feel a little bit less like I am holding a one-way conversation!

Hope you all have a good week.

Wednesday, October 13, 2004

Wednesday, October 13, 2004 4:20 PM CDT


Hello -


Well - still no word about results from the urine test. I emailed Nathan's doctor and have previously asked him and so I just don't know how much more I can harrass him. I will ask him to check one more time before we leave for New York. I was able to leave a message for him to ask if Nathan needed a flu shot. He said yes, but then they found out their order was cancelled and so I put Nathan on a list at his pediatrician's office to see if he can get a shot through them. I have heard that they aren't offering them at the clinic in NYC and so this is our only chance.


With it being fall break this week, Nathan hasn't had preschool. Monday we went to a playgroup at McDonalds and let the kids play for a long time. Nathan has finally conquered his fear of those high tubes and slides and has a blast. Physically it is a great thing for him to do. Yesterday the kids were at daycare all day. Usually I have to pick up Nathan in the middle of the day for preschool so it was nice not to have to do that. I thought I might go see a movie but there was actually no movie I was interrested in. Winter blew in last night and so we have been staying home mostly today playing and baking cookies.


Our friends Janene and Joshua are in New York right now where Joshua is getting his 7th round of antibodies (which is the round Nathan is about to have) and he seems to be developing a HAMA. We are SO excited for them and are hoping they send some of that magic Nathan's way! They won't know until next Tuesday for sure but we are keeping our fingers crossed for them!


That's about all that has been going on here. Nothing on the medical front until next Wednesday when Nathan starts his shots.


Until next time...

Friday, October 8, 2004

Friday, October 8, 2004 5:02 PM CDT

Hello - sorry that I didn't update sooner but I just finally got to talk to the Doctor in New York today. He called me to ask if Nathan could delay his trip by a week. In the end we can not because Luke has already arranged his travel schedule for work around the trip and cannot change it now. I don't know the reasons for asking for the delay but I am now expecting a hard week because they are most likely overbooked and understaffed. I asked him about the MIBG scan and he didn't see anything to worry about and said many of the same things about how the surgery affects the way the scan looks. He said we could look at the urine test to reassure us, but unfortunately I still don't have those results! I have an email to the doctor here to have him double-check. I will let you know if I hear anything. The "final" bone marrow results also came back negative. They send some of the bone marrow out of state to test for microscopic disease and so that is good news.

Our friend Lori is visiting with us this week. Yesterday we went to a pumpkin patch. They also had apples to pick. The kids LOVED that. In fact they both got themselves apples to eat for breakfast before Luke and I got up this morning. We also picked some pumpkins right off the vine. Today we attempted to bake some cookies from a kit that failed so I think we will try again this weekend. If the weather holds, we will go to the little amusement park tomorrow. I have been wanting to get back there and since Lori will be able to come with us there will be enough adults (Luke has to work).

Thanks to everyone who responded about the bunk beds. The Magic Eraser worked on the dressers and wood doors, but not on the bunkbed or walls. Unfortunately the bunkbed has no varnish and so the marked went right into the wood. I did manage to fade it a little with rubbing alcohol. I do know this is normal childhood behavior, it is just that the stress level has been so high around here that it was hard to take on top of everything else.

I had a parent-teacher conference last night with Nathan's teacher. He is doing well. He has definitely made improvements in his interactions with other children and physical abilities. He still has some work to do in both areas. His fine motor skills are also behind, but they work on that a lot and he has learned to write and N and an A and is getting better at tracing and cutting. All and all they are pleased with his progress as am I. Next week is fall break and so he doesn't have any preschool. I told him that and he was pretty sad about it. I will have to try to do some fun things with them this week. Since neither of them really naps anymore - a whole day without preschool seems like an eternity.