Thursday, April 29, 2004

Thursday, April 29, 2004 8:36 AM CDT

Good morning. Sorry I didn't update yesterday - I didn't get a chance to call back about the HAMA until this morning. It is negative.....no big surprise......

The hearing appointment went well. They made molds of Nathan's ears. Now Luke and I just need to decide which hearing aids to get him. We were offered two models. The more expensive ones will be $2000 more than the lesser so we are trying to ask around to figure out if the features of that one are really worth it.

Nathan did well at the dentist appointment. Unfortunately he did not have a cleaning because he has a broviak and the dentist wanted him to have antibiotics before a cleaning. The dentist did notice several cavities and many more teeth heading in that direction. This was just by looking and not even with an x-rays. This was not what we wanted to hear. He will go back for the cleaning in two weeks and we hope to get a better idea of the big picture.

Today we will stay home. I am not feeling well this morning and after all the running around the past few days I am ready to stay in.

Wednesday, April 28, 2004

Wednesday, April 28, 2004 7:56 AM CDT

Good morning,

Well, I just called New York and there are no results yet. She doesn't know if the results aren't in yet or if they didn't receive his sample. I know the blood got there so we'll see. Hopefully I will know something later today.

Nathan and I are off to the hearing aid fitting and to the dentist. I will update later today.

Monday, April 26, 2004

Monday, April 26, 2004 7:09 PM CDT

Hello - just a little update and musings from me (Susan).

I got Nathan's hair cut today. See the new picture. I decided it was better to cut it really short than to keep it long and have it stick up just like baby hair (which it is). I think it looks a little more like "normal" hair. I am anxious for Nathan to not look like a cancer patient anymore. He was pleased with the cut as well.

The kids and I had a really good day. We didn't do anything special but it was one of those days where it felt like a "normal" day of a normal mom and her two kids.

Not that I know what normal is anymore. I suppose it is any day without medical concerns. My old normal is long gone and will never be again but my new normal lets me truly appreciate every little smile and hug and mundane activities that we do. I don't think very far in the future anymore - just the next couple of months. Every day that Nathan is doing well and Julia and he can be together and our family of four together really is a special day for me. This is the opposite of what I was like before. I was always looking ahead and never enjoying the moment.

This is not to say it is not hard for me to adjust to a new life because lots of time I don't know what to do with myself. That's ok though - I will work through it.

So - tomorrow is the HAMA test. We are REALLY hoping for a HAMA. I am crossing all my fingers and toes.....

Sunday, April 25, 2004

Sunday, April 25, 2004 2:28 PM CDT

Hello everyone - we are having a good weekend.

Friday I took Nathan to the ENT doctor and he recommended hearing aids. I will take him back to the audiologist on Wednesday to get him fitted for hearing aids. I am not sure when he will actually get them. If he doesn't like them and won't wear them we can return them. Afterwards Nathan and I went out for breakfast.

Saturday Luke had to work a good part of the day and so the kids and I wandered around the mall. We all went out for dinner later and had a nice time.

Today we went to a birthday party at the zoo. Unfortunately it was snowing quite hard but we went to the ape house and then had the party in a cabin on the property. The kids had lots of fun and it was a nice family time for us.

This week Nathan goes for his hearing aid fitting and to the dentist. His teeth haven't been looked at in 6 months and I think they need some attention.

So - I will definitely update after Wednesday and let you know how things went.

Thursday, April 22, 2004

Thursday, April 22, 2004 2:20 PM CDT

Greetings...

Nathan had a fine visit to the oncologist. He just needed blood counts. He didn't even see a doctor. His blood counts were excellent. His hemoglobin was 11.5 (normal range starts at 12) his white counts were on the low side of normal but just fine and his platelets were 178 which is the very low side of the normal range. This is the first time his platelets have been in the range in a year! He received a medication to boost his hemoglobin but this time they were able to give him one that lasts 2 weeks and so we don't have to go back next week.

The preschool assessment went ok. It was just a pre-evaluation to see if he would receive a full-blown evaluation which they decided he will. He refused to do some of the tasks she wanted him to. I think he was nervous about it. We will have to talk it all up before the formal assessment. All in all his fine motor skills are definately lacking and gross motor skills on the edge. When they assess him they will decide if he qualifies for services from the school district such as physical therapy. If he doesn't he still may be able to go the the preschool through a Colorado program based on need for services which he definately has.

Between yesterday and today I have managed to tackle some of the household projects that have been gnawing at me and I feel so much better having accomplished them. I did pay a price last night. I think my allergies combined with physical and emotional exhaustion got to me and I had a horrid headache and went up to bed after dinner and stayed there. I am feeling much better today.

Tomorrow morning Nathan will go to the ear doctor. I haven't a clue what to expect from the visit but hopefully we will come out of it having had an expert evaluate him and let us know where to go from here - if anywhere.

Tuesday, April 20, 2004

Tuesday, April 20, 2004 8:51 PM CDT

Hello - not too much to report. We had a good weekend. To tell you the truth I am wracking my brain to figure out what we did and I can't even remember. This is not a bad thing...I am just tired I think. Julia slept poorly last night and we didn't get too much sleep.

The kids were in child care today and I had the day off. I mostly ran errands but Luke and I did have lunch together which we both enjoyed.

Tomorrow Nathan goes to the clinic in the morning and in the afternoon someone from the school district is coming out to pre-evaluate him for the school district's preschool. If they decide he has any special needs he would attend preschool this fall for free. Even if not thay can help us assess any areas of concern. Since he is our oldest we have no frame of reference to compare his skill levels. Either way he will be going to preschool we just need to know if he needs some extra help.

Well - that is about all my brain can produce. I will update in the next few days.

Saturday, April 17, 2004

Saturday, April 17, 2004 7:43 AM CDT

Hello - All is fine here. We have been enjoying some "normal" days around here.

Nathan went to the oncologist on Wednesday for a routine check-up. We decided to test his urine. That is one neuroblastoma test that hasn't been done since after his surgery. Here in Colorado they are willing to do it as a spot check whereas in New York they want a multiple-hour collection. I let it slide in New York because I didn't want to put Nathan through that in his newly potty-trained stage. We may have the results next Wednesday when we go back.

I made an appointment for Nathan with a Ear Nose and Throat doctor to evaluate his hearing and what needs he may have there. He definately has trouble hearing us - especially when there is any kind of ambient noise. We know he has hearing loss but haven't been advised on what to do about it so we are glad to have this appointment. He will also be going to the dentist. I am not sure what is going on with his teeth but the chemo he has had can affect them and it is time to get that checked out.

Nathan continues to feel fairly good. He is not quite as peppy as he was the first few days we were home but still seems to feel good.

We have no plans this weekend. Just have some good family time.

Hope you all have a good weekend as well.

Tuesday, April 13, 2004

Tuesday, April 13, 2004 7:41 PM CDT

Hello - we have had two nice days. Monday the kids and I just ran some errands and hung out together. Monday night we went to a birthday party for Catherine - the 4 year old daughter of my friend Daelyn. The kids had lots of fun.

Today the kids went to daycare and I had a nice day off! Luke and I even got to have lunch together. Both kids had a good day and Tammy (day care provider) remarked about how differnt Nathan's mood and energy level was. It is SO MUCH better. He doesn't seem depressed anymore either. Luke says he is a different child than before we left for New York. I think you can even see it in the new picture I put on the top of the page. He has a sparkle back in his eyes. It is hard to say if things will get worse again but we'll take what we can get when we can get it!

Tomorrow Nathan goes to the clinic for a checkup. Julia is probably coming with us since it is at 1:30 and an awkward time to leave her with anyone since it is normally naptime. It will hopefully be a short appointment anyway.

So - we are just kind of figuring out what ever new routine we will have around here. I am always a little adrift right when we get back from New York. It is hard to adjust.

Two weeks from today Nathan's HAMA test will be run. We are not expecting it to be positive (and thus he would be done with antibodies) but we can always hope! Otherwise we will go back in June.

I will probably not update as much while we are at home. Hopefully there won't be much going on!

Oh - and I know I owe lots of people emails and I hope to get moving on that soon!

Sunday, April 11, 2004

Sunday, April 11, 2004 9:23 AM CDT

Happy Easter everyone...

We are all happy to be home. The trip home was uneventful despite the snow in Colorado. There are several inches of snow on the ground this morning.

Yesterday we colored easter eggs and this morning we awoke to easter baskets and the easter bunny had hidden the eggs and the kids had fun finding them. We had a nice breakfast and are just enjoying being together. We will go have easter dinner with some friends later today.

Nathan is feeling well and very happy to be home.

I hope you all have a wonderful easter too.

 

Friday, April 9, 2004

Friday, April 9, 2004 1:29 PM CDT

Done Done Done with round 4!!! Done with IV GM-CSF and back to the shots net time. Boy was it a long two weeks.

Today was not too bad. Nathan was pretty entertained as we did his IV meds and we played some Candyland, cars, cash register and he helped them bake some scones. He got going on the antibody nice and early and his pain was very manageable. He actually sat up the whole time and for much of the time was half watching the TV. We didn't have to turn on the oxygen at all. He slept afterwards and fussed about leaving but not nearly as bad as the previous two days. He did decide to take a nap when we got home and is doing so right now. Later he wants to go to McDonalds.

We will be flying home tomorrow morning. It is supposed to snow in Colorado. I don't care - it is home!

I want to add that one of the few positive things about being in New York is the wonderful people we have met. We have met many other families going through this and with them we can talk about serious things and also laugh and joke and we are completely comfortable doing so because we all know where we are coming from.

So - the next entry will be from home. Hoping for a very uneventful trip and relatively quiet weekend.

Thursday, April 8, 2004

Thursday, April 8, 2004 5:37 AM CDT

Good morning.. I guess I forgot to update yesterday.

Nathan's day was much like the day before. Some pain - not too bad. He really did not want to leave. This is not unusual but he just didn't get over it and after we got back to the apartment he was still upset and didn't want to be there so we put him in his stroller and went to the Central Park Zoo. It is quite a walk (over a mile) but we all enjoyed it since the weather was very nice. We didn't stay at the zoo very long but we all enjoyed the animals. After we returned we went to John and Judy's for dinner (friends who live in the building) and came home and Nathan went to bed.

This morning Nathan seems to be in a good mood. I am just hoping for another day like yesterday in which the pain is not too severe.

2 more days to go!!!!

Tuesday, April 6, 2004

Tuesday, April 6, 2004 7:05 PM CDT

Hello - 7 down 3 more to go...

Today was not as good as yesterday but I was expecting that - these treatments are never the same. Nathan's pain medicine crankiness was in full-swing today. At one point he struck me in the eye. We got home by 2:00 pm and Nathan rested on the couch and was cranky and in a little pain. After much cajoling and bargaining we got him to agree to go to the Natural History Museum to go to a special butterfly exhibit there. They had a special group for kids from the hospital. As I said, NAthan didn't want to go and I had to promise him he didn't have to look at the butterflies. After we were in the for a few minutes he told me he DID like to look at butterflies and had a great time as they flew around us. After the museum we went out to dinner and had a nice time. I had to rub his feet a little bit at dinner but it was still pretty minor pain.

I can't even explain how much I am looking forward to being done on Friday and getting 8 weeks off. I am sure it will go by too fast - but after a year of treatments with at the most about 2 and a half weeks off I am so excited that we are finally at a point where we will have months off at a time!!!!

Monday, April 5, 2004

Monday, April 5, 2004 2:39 PM CDT

HEllo - sorry for the lack of updates.

Nathan's weekend was pretty good. He didn't have any pain which is the best thing. Saturday he stayed in his pajamas and play for half the day and then we went out for a little walk and went to the candy store. He napped later and my mom arrived. Sunday we went out to breakfast, took a walk in Central Park, and then to Times Square to Toys R Us. Nathan had a great time as usual looking at all the toys. Overall he was in good spirits and decent amount of energy. His counts are doing well - better than they have been in a while. For those of you in the know - his hemoglobin is 11.1 and platelets 156. White counts are sky high due to the GM-CSF he gets with his antibodies. He did plenty of walking around - more and more he wants to walk instead of being in the stroller - at least for a little while. That is SO wonderful to see. As far as bowel pain, it is much improved. He complains a little here and there but non eof the exteme pain he had had. I don't know which of the medications are making the difference - or if it just time passing and him healing.

I am still at the hospital. Nathan's treatment today was not too bad. His pain didn't last too long and then he went to sleep for a while and then awake but not too crabby and now he is sleeping and we are just letting him stay for a while. Usually he does not sleep at all. He normally is rubbing his fingers but looks asleep and it is just his way of getting through the pain. Right now he is definitely sleeping!

I asked the doctor about HAMA and he said that usually if they haven't gotten it by now they don't get it for a few more rounds. From this point on we will be hoping he develops it and we can be done.

I'll update again tomorrow.

Friday, April 2, 2004 (part 2)

Friday, April 2, 2004 6:08 PM CST

Hello - If you just checked this site today see past journal entries for an early morning entry.

Today was not as good but I pretty much expected that.

I was kind of low on patience today and Nathan kept asking for one thing after another from the cafeteria which is a long way and long elevator wait away.

He lost an hour and a half of time this morning when it was discovered that his IV was leaking. They had to start it over again. He didn't get his antibodies until after 1:00 pm.

His pain was there but he handled it pretty well. The bad part was he was extremely nasty and cranky from his pain medicine. I think I will ask them to try a different one next week.

When we got back (around 3:45) I was cranky too and so I went out for some coffee. I got back to find Nathan had been in pain while I was gone but was doing better. He had wanted to go to McDonalds and so off we went. He didn't eat but 1 or 2 french fries and then we went to Barnes and Noble and he picked some books out. We came back and read and then he wanted to go to bed. As we were snuggling he asked me what my favorite part of the day was and I told him it was the bookstore. I asked him and he said "my favorite part of the day is when I got through with my pain". Can't argue with that one!

Two days off...we need it! Hopefully he will feel well and have some fun.

Friday, April 2, 2004

Friday, April 2, 2004 5:28 AM CST

Good morning,

Much, Much better day yesterday. We got in his room fairly early and when he got his pain it was very different. It was not nearly as intense and he didn't even lay down right away. He also watched TV some during it which is not usual. The thing that bothered him the most was that he broke out in a very hot sweat and so instead of using the oxygen for his nose I used it to blow cool air on his head and I rubbed his head.

We got back and he sat on the couch for a few minutes and then asked me when it woudl be naptime. So I put him down and he woke up after an hour or so and was feeling good. He played some and then wanted to go out for dinner and so we did. Afterwards we walked over to the drug store for some easter candy. As we walked he told me he didn't need the stroller for the hospital that if we couldn't get a taxi or bus he would just walk (not possible at this distance but he doesn't know that).

He went to bed very happy and playful and woke up full of smiles too. What a relief to have such a good day. Who knows how today will be - with antibodies each day is different. Either way it is Friday today so that in itself makes it a better day!

Tomorrow Joan leaves and my mom arrives. Nathan and I haven't picked out an activity for the day yet but I am sure he will come up with an outing.

Thursday, April 1, 2004

Thursday, April 1, 2004 5:57 AM CST

Luke here. This post is mostly Susan's, but I have added some of my thoughts on this anniversary to the bottom of Susan's first paragraph.

April 1 - one year from diagnosis. My overwhelming feeling about today is how grateful I am that Nathan is still with us one year later and currently NED. Today he will be getting treatments to help keep the cancer from returning and although very difficult I am thankful for this too.

Luke here adding some musings on this anniversary. I've been thinking a lot about what today means to me. Susan summed it up well. I'm grateful and happy that Nathan is still with us one year later and is at such a good point in his overall health. So many of you have followed our family so closely through this journal. We spend a lot of time on status, but also a fair amount on pain, fear, and other not so happy stuff. I just want to encourage you all to use this day as we are. Sit back, take a deep breath, and take some joy in how far Nathan has come in this past year.

Nathan's day yesterday was better. He still had quite a bit of lingering pain and a little fever but not as bad as the previous day. We are wondering if the fevers have to do with him getting his GM-CSF by IV instead of by shot. Some kids get fevers from the medicine and maybe for Nathan the difference of getting it over several hours instead of in a shot is the cause.

We had to wait quite a while to get a bed yesterday and Nathan was so tired of waiting. He did well but it was hard for him. Poor kid hates waiting. He has had to wait so much in the last year and he is so good but he is always telling us waiting is hard.

Well - we are off in the rain for another day of pain...hoping today is even better than yesterday.