Monday, September 26, 2005

Monday, September 26, 2005 6:38 PM CDT

Another Update: Wednesday September 28

Happy Birthday, Susan!

Today we are celebrating Susan's birthday. I don't have to tell you all how amazing Susan is. You know from reading her words here on Nathan's site. Susan is the most amazing mother, wife, and friend that I could ever imagine.

This is the second "top post" of the day. Please make sure and read Susan's short note on her and Julia's doctor appointments right below this.


************************************************
Update: Wednesday September 28

Just wanted to say that Julia's heart is perfectly normal! She'll go back in a year and then 5 years. My appointment was fine. I did gain some weight and a centimeter. The baby sounded fine.

************************************************
Another week - counts still about the same.....

The good thing is that his hemoglobin was up a little. Usually it is up on a Thursday (after medication to boost it on Monday) and then down on Monday when he receives medication again - so it was good it was up a little on a Monday. His ANC is again 800 - so slightly neutropenic but is doctor doesn't think it will drop more...we are not checking counts again until next Monday - so I hope he is right. His doctor is not worried that his bone marrow is shutting down - he feels it is just very sluggish and is coming up VERY slowly.

Nathan got a flu shot. He was unhappy at the prospect but as usual handled it like a pro. There is a chance the shot won't even work since his immune system is supressed and may not actually make the antibodies against the flu - but his doctor felt it was worth trying.

We talked about scans and we will probably do the full set in a few weeks. Luke and I have gone back and forth about doing them in NY or not. We feel that they have more expertise. However - we think we will likely do them there in a few months anyway and so I think we will do them here. If (when?) we have the expected ambiguous results the onyl answer would be to rescan to see if anything changes anyway and we can do that in New York. His local doctor will confer with the NY doctor about what scans are needed for the trial and we will make the final decision about when to do them. At this point it has been 3 months since MIBG, 2 months since bone marrows and a few weeks since CT scan. We will go ahead and do them all (and the urine test) to get back on track. Let's see - what else...Oh - his weight is back up! He is back to 40 pounds and so we are feeling good about that.

We had a good weekend. I went to the spa - thanks again to whomever sent me the gift certificate. It was wonderful! Luke and I also went out to dinner. We worked on boy names but didn't make too much progress. We did settle on a girl name (Jude H....we have a policy of not sharing our baby names until the baby comes out..sorry!). It was nice having a leisurely dinner together.

I go to the doctor tomorrow and am just hoping to hear that I have grown a little since last time. I didn't have any growth between my last two appointments. I am not too worried - but a little bit. It doesn't help that people left and right are telling me how small I am for being as far along as I am. At least the last person who made a comment said I was carrying well - I much prefer that! I have been starting to buy the needed baby things...8 weeks left! I can't believe it!

Julia also goes to the doctor tomorrow. She has a follow-up echocardiogram. They are just checking another time to see if she has any heart damage from the Kawasaki's disease. It is highly unlikely at this point. After this one I think she won't be checked again for a year or two. She is happy about getting to go to the doctor and Nathan needing the babysitting! Though she did ask if she could stay and play after she was done. She gets along SO well with Tammy's daugher.

So - that's it for now...it will be nice having only one clinic trip this week.

Friday, September 23, 2005

Friday, September 23, 2005 7:55 AM CDT

Well - counts are still kind of crummy. His white count was up as a result of the medication. I don't think I mentioned it is in shot form - Nathan is so good about it. His white count is only up a little however... His hemoglobin is about the same and his platelets are lower. I am beginning to really worry about his bone marrow. He does have some stem cells stored but we really need to save those for future treatment. After surgery we had thought about trying to colect more stem cells but it is pretty clear that he has none to give us - so I am glad we didn't go to all the trouble trying to get some. He will me on the medication (neupogen) through today and then we wills top on the weekend and see what his counts are on Monday. Monday will be a day shy of 4 weeks since chemo.

They repeated the tests on his blood that show inflammation. One didn't get done I guess - but the other was down quite a bit from last Monday. So - whatever was going on in his body (probably this leg thing?) seems to have resolved itself. Monday I will discuss with his doctor the timing of his next MIBG scan and Luke and I will need to decide if we are doing it here on in NY.

Nathan fell asleep on the way to his appointment. This is very rare for him. He was very unhappy when he woke up and had to walk into the clinic. He threw a fit remarkably like one of his post-narcotic psychoses. Fortunately he did walk even though he screamed and complained the whole time. If he had refused I guess I would have had to have someone bring a wheelchair down from the clinic. It is odd for me to be at a point where I can no longer carry my child! If I weren't pregnant I suppose I might have been able to do it. As it is every step I take hurts these days.

As far as non-medical - things are going well. Nathan told me the other morning how much he like to go to school and that his favorite part of school is learning new letters. He seems to have lots of friends in school. One little boy has been begging his mom to have Nathan over - so on Wednesday after school she asked if Nathan would like to come over sometime. I told her our schedule is difficult to predict sometimes and then I said he might have chemo next week. She asked me to repeat myself and I said chemo and then said something about that Nathan is the one with no hair. I just assumed she knew! Yesterday when I saw her again we had our phone numbers to exchange and I told her I hope I didn't freak her out and she said no, of course, and said her son had told her Nathan had no hair but she thought he just meant Nathan had a buzz cut or something! Anyway - hopefully he will have a playdate next week. As for hair - I think the light chemos he has had have kept it from regrowing. There is some whitish baby fuzz - but no real hair.

So - we are still playing the waiting game...waiting for counts, chemo and vaccine...but Nathan is feeling good so that is what matters right now.

Tuesday, September 20, 2005

Tuesday, September 20, 2005 8:16 AM CDT

I have to start this entry today celebtrating the beginning of our wonderful family - on this day eight years ago Luke and I got married in a little white chapel in Annadale Virginia.

Now to the medical...
Nathan's bone scan came back clear. He also seems to have stopped having pain in the leg for now. His counts are still tanking. His platelets were up a little but his ANC was only 700 which is getting close to the level we need to keep him home. His hemoglobin was also lower but not in transfusion range. We opted to give him so neupogen to up his white count even though it may stall out his platelets. I don't want him missing school when he feels so good. His doctor is now wondering if when we started round 2 of the chemo and his counts were so great perhaps they still were going to drop and so we really hurt them by starting chemo again so soon. Whatever the reason he will not have chemo this week. We heard from NY that the vaccine trial is at least 6 weeks from opening and so the chemo will continue for now. I am hoping we can actually start the trial after the baby comes if not after the holidays. I will have to find out how time critical it all is. So - Nathan goes back to check counts on Thursday.

We had a very nice weekend. We had a pass we got from Give Kids the World that allowed us to go to other parks at no cost for a year and so we used it to go the the Royal Gorge (about an hour and a half away). First we stopped at a park that let us ride a ittle train to view the gorge and bridge and then we went to the gorge and rode the carolsel, the incline down to the bottom of the gorge and walked out onto the bridge. It is the world's tallest suspension bridge.

I must run off to get Nathan on the bus - I will update again on Thursday.

Friday, September 16, 2005

Friday, September 16, 2005 9:37 AM CDT

Hmm - I gues I forgot to update yesterday - sorry!

Nathan's counts are still low. His platelets and hemoglobin were only very slightly up and his ANC (immunity) was a little lower but still OK at 1100. So - we will definately not have chemo on Monday. There is still no word from the doctor in NY so we are still in the dark about things. Since his counts haven't come up it doesn't hurt anything that we haven't heard - but it is frustrating to not know what the next step may be.

I took Nathan in for his bone scan injection this morning and we will go back in a little while for the scan. There will be a screen where I can see what is on it - but I am not that familiar with a bone scan so I don't think I will try to interpret it. Hopefully the results will be available on Monday when Nathan goes back to the doctor.

Nathan's weight was up about a pound - so I am pleased about that. He definately looks a little bit better in that department.

On Wednesday evening we all went to the church. They have dinner and programs and we had asked the kids if they were interrested in kid's choir and they were. I went to my choir rehearsal and Luke went to a class. Both kids seemed to have a really good time. Unfortunately it keeps them up quite late since my rehearsal isn't over until 8:30 but they keep the kids and let them play. They went straight to bed and so it seems to have worked out fine.

My doctor's appointment went fine. I didn't appear to grow any since the last appointment - but am still in the normal range - plus those measurements are anything but exact. If I still show now change next week then they will look into it. The baby is quite active and is head down so everything seems good there. 10 weeks or so to go. Luke and I need to come up with some names for this child!

So - I think that catches us up. Check out the view photos link for more new pictures.

Monday, September 12, 2005

Monday, September 12, 2005 6:01 PM CDT

Here we are after a busy weekend. I will get to that in a moment.

I have to share the medical news first. I have been extremely stressed about Nathan's status. We did get some good news today that Nathan's urine levels are normal as is his LDH. His urine levels were elevated at relapse so it is good to see them back to normal. We didn't have his LDH at relapse but it can be an indicator of cancer activity in the body. His Sed rate and CRP are both high. Once again - these are the tests for inflammation in the body. They can be high for all kinds of reasons. For example they were high when he was diagnosed and they were also high when he had the fluid on his hip. So - between the recent surgery, leg pain, and recent viral respiratory illness who knows what that represents. We will redo it next week. The bone scan will really be the next indicator of what may be going on. I was putting lotion on his legs last night and rubbing it on the "spot" on his thigh hurt him. His oncologist said it really seems like a soft tissue problem (muscle or fat). So - we'll see what the bone scan says and go on from there.

His counts are actually lower. His doctor thinks that his platelets rising last week may have been an inaccurate test. They are at 23,000 (transfuse at 20,000) but are likely on their way up (they can tell that his platelets are bigger cells which mean newer...something like that - from some graph the machine prints). His hemoglobin was down but at 8.2 still not at transfusion level and will hopefully remain high enough not to transfuse. His ANC was 1200. Anything below 1000 is neutropenic but it is really below 500 where he should be kept out of public places so 1200 is just fine. This is without having any neupogen - which is the drug he usually gets to bring his white counts up - so that is fine.

We will recheck counts on Thursday and try to figure out where we will go from there. If they are still low, we will see about chemo next week. If he takes to long to recover they will lower his dose of chemo back to where it was the first round. We are kind of assuming at this point that he will have another round of chemo. His oncologist will email the NY oncologist to see what the status is on the vaccine trial and get his input on more chemo. I asked him if there were no trial what he would recommend for Nathan and he thought 4 rounds of this chemo (total) so two more rounds. Since we haven't heard anything from NY I think it is very likely he will start chemo next week again so long as his counts are high enough. I hope we at least get a little bit of info from NY.

We didn't get Nathan's weight today, but I think he is holding steady. I will make sure to get it on Thursday. I think that covers all things medical for today....

Back to our weekend...Friday night Luke and I went to the choir banquet and the kids were very happy to be babysat. They just love babysitters and especially love the sitter they had - Brenna. They love to play with her. Unfortunately I had bad indigestion all night which made it a little hard to enjoy it all. It is just one of those pregnancy things that crop up every once in a while and I wish it could have happened a different night.

Saturday we took it easy during the day with me running a few errands by myself and then a family trip to the "cookie coffee shop" AKA Panera for an afternoon snack. That is one of the kids' favorite outings. Saturday night we went to the zoo. It was a very fun evening. They had trams taking everyone around the zoo so we didn't have to tackle any of those hills! The kids decorated crowns, ate corn dogs and popcorn, rode the carousel, checked out a racecar, fed the giraffes, rode the little train, got a very close up view of a lion, watched an elephant paint, won a canvas of the elephants trunk print we saw it make, and got all kinds of cool little gifts and things to bring home. It was neat being at the zoo in the evening and especially when it got dark. We only did about half of the things available to do - but we had to leave at a reasonable time to get everyone to bed. It was a wonderful event and will be annual from now on.

Sunday brought church, housework and some rest too.

Luke is off playing pick-up basketball after several Mondays in a row without being able to make it.

Tomorrow I have a doctors appointment while the kids are in school and Wednesday Nathan has field day at school and I will drop Julia off at Tammy's so I can be with him and help him to do activities and keep him from doing things he should not be with low blood counts. So - I will probably write again on Thursday after his clinic visit.

Thanks for checking in!

Friday, September 9, 2005

Friday, September 9, 2005 7:41 AM CDT

TGIF!

Nathan went to the clinic yesterday and we were happy to find that his platelets went up and his ANC stayed around th same - which is a number that is fine for his immunity. He hemoglobin dropped a little - but not into transfusion range and he does really well with low hemoglobin so we are not going to worry about the weekend. Hopefully it will bounce back up since his platelets are coming up. His doctor wasn't in so we didn't find out if he has heard anything from the doctor in New York. Nathan is still coughing some, but his lungs sound clear again. We are giving him the inhaler when the coughing gets bad - but have no feel for why he is coughing. His leg pain seems to have gone away again. I couldn't get his bone scan scheduled until the 16th - so we still have to wait a week for that. We did collect his urine yesterday and they did some blood work that, if elevated would indicate a problem - though the problem could be cancer or some other medical problem so we would have to start looking. I imagine we will find out the bloodwork results on Monday.

Tonight Luke and I are going to a banquet for my choir and tomorrow night the whole family is going to the zoo. It is a special program of some sort for pediatric oncology patients. That is about all we know about it - but I am guessing we might get to do some things there that people normally don't get to do - so we are hoping it is fun for the kids. I am a little worried about getting around. Our zoo is built into the side of the mountain and has very steep hills.

Well - that is about it for goings on here. Hope you all have a good weekend.

Tuesday, September 6, 2005

Tuesday, September 6, 2005 4:40 PM MDT

An update on Nathan's appointment today...

His counts are actually down. His doctor said that the 20�ncrease he got in chemo could definately be enough to make the change from last round when his counts didn't drop at all. The good thing is his white blood count and ANC which represent his immunity are fine. His platelets are quite low and his hemoglobin (red blood) is lower as well. We'll go back to check on Thursday so he can get platelets on Friday if needed.

His cat scan report was the usual slightly iffy results. There are definately no more tumors in there. There were two lymph nodes in his abdomen near his chest that may be slightly larger than in the last scan. Nathan's doctor is not worried about them. He feels it is probably changes from surgery. It will be one of those things we just watch.

Nathan will have a bone scan to see about the leg. I will schedule it tomorrow. They will also do the urine test for neuroblastoma on Thursday. That will take a week or so to get back.

Nathan's local doctor will email the doctor in New York and we'll see if there is any news about the vaccine study.

Monday, September 5, 2005

Monday, September 5, 2005 3:49 PM CDT

Hope you all had a good Labor Day weekend.

I am trying to think what we have been up to. Nathan finished his chemo on Saturday. He threw up last night once, but that is the extent of it so far - so not bad. He does seem a little more tired and so we'll see how the beginning of this week goes. He is still coughing some too. His leg pain is back. We want to do something this time to find out what is going on. It could be cancer or it could be neuropathy or something completely different. Either way - we really need to know. If it is cancer then we need to be doing a different treatment for Nathan than we are doing currently. We'll see what his doctor says tomorrow.

As far as our weekend as a family...well...Friday afternoon the kids and I went to a friend's house and the kids played while the moms cleaned. It was the first time that Nathan has played with kids other than at Tammy's (daycare) for a very long time. Too long... He was hooked up to chemo but it didn't stop him. Friday night Luke and I watched a movie - I wouldn't normally mention it but we both really liked it so I thought I would pass it on. "Life as a House". Now it is about a man who is dying but really it is a movie about people and we both really thought it was very good but a little sad at times.

Saturday we ran some errands, had lunch outside at Sonic and thoroughly cleaned the van inside and out. It was the first time the kids helped to wash the van and they and Luke had a wonderful time.


It was a normal average Saturday I suppose - but a really good day for our family for that same reason!

Sunday we went to church. Julia sang "Our God is an Awesome God" all the way home in the van - Luke and I really got a kick out of that. They both really enjoy Sunday school. We went to a birthday party in the afternoon for a little girl turing one that goes to day care with Nathan and Julia. We all had a good time.

Today Luke and I (and the kids to a somewhat lesser extent) cleaned all morning long and then went to a baseball game (Colorado Springs Sky Soxx). It was the first we have gone to as a family. Nathan really enjoyed it. Julia was a bit bored. I was a bit uncomfortable! All in all we had a nice time. We left in the sixth inning.

So - that brings us to now. Tomorrow both Nathan and Julia go to school and then Nathan goes to clinic in the afternoon. I will try to muster up the energy to go to choir practice either tomorrow or Wednesday night. Luke doesn't get much of a mention I guess because he will be working, as usual!

I am hoping that Nathan feels well enough to attend school all week. Of course - we may throw in some extra scans to figure out this leg thing and that could affect school. We should see a CT scan report tomorrow and are hoping it contains no nasty surprises.

I put some pictures from August on out family web page...see link nearer the top of the page or at the bottom.