History

Thursday, July 29, 2010 9:23 AM CDT

Three years. Feels like three minutes. The love never dies, never lessens. Love you always, Nathan.

Wednesday, June 16, 2010 3:46 PM CDT

Ten years ago today I became a mother for the first time. A mother to a beautiful baby boy.

I will love and miss you forever, Nathan

Sunday, September 6, 2009 9:52 PM CDT

Anyone still here? I know I don't update this anymore so I don't know if anyone ever checks in.

Somehow I just can't use this site anymore now that Nathan is gone.

I have mentioned before that I have a blog and for a while it was something I wanted to keep somewhat private. However, I find that other parents do the same thing I do, stop updating their caringbridge sites and I still want to know how their families are doing.

So - I am going to go ahead and share the link to my blog. I find it helpful at times to read the blogs of other parents who are grieving and so while my blog is about all sorts of things, I think it is time to share.

http://suzeo99.blogspot.com

cut and paste to access - I am too lazy to do any html right now!

Thanks

Susan

Wednesday, July 29, 2009 10:37 PM CDT

Two years. Always loved, always missed. Our sweet boy.

Wednesday, January 14, 2009 9:20 AM CST

See note in green above. If you have tried to click it before and it didn't work it is now fixed and you should be able to go there.

Tuesday, December 16, 2008 10:06 AM CST

It is that time of year again, when the fundraiser Lunch for Life is in full swing. We may not be able to save Nathan, but a lot of his friends are still battling and I would love to help find a cure for them and all the kids yet to be diagnosed.

Here is some information:

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Lunch for Life® is about helping children who have been diagnosed with neuroblastoma, a deadly form of cancer that strikes thousands of infants and toddlers each year.
This fundraising program is a simple but powerful solution: We ask people to donate one day’s lunch money to the Children’s Neuroblastoma Cancer Foundation (CNCF), a public charity dedicated to curing this cancer.
The cost of one lunch, if enough people contribute, will help save lives, fund research for a cure and provide support for families. Please donate your lunch money to the Children's Neuroblastoma Cancer Foundation and help us eradicate this disease.

Here is an explanation of how your money is used:

WHERE DOES THE MONEY GO?

* ALL funds raised through "Lunch for Life®" go directly to support neuroblastoma research and initiatives.
* Funds are dispersed through a grant review process and funding decisions are based on the direction of the CNCF’s Medical Advisory Board. (This board is an independent and organizationally diverse group of neuroblastoma specialists and researchers committed to hastening a cure.)
* Lunch for Life® is entirely about removing this horrible disease from the face of this earth. It is about speeding up the process.
* Lunch for Life® is about saving children's lives.

It is simple. We are an organized group of families with children, grandchildren, friends, and relatives afflicted by cancer. Our only goal is to erradicate this disease. Our children may or may not benefit from this research. A cure may not come in time for many of our little warriors. But we can keep other families from walking in our shoes and we can keep other children from entering into the world of neuroblastoma. It is for these reasons that we are committed to finding the cure. We have no desire to fund expensive marketing campaigns. We are committed to finding a cure. It is about the children.
Our goal to hasten the search for a cure does not only include fundraising but it is also about speeding the process of getting research dollars into the hands of those that need it the most. For this reason, the CNCF developed a grant review process in order to direct the funds into the most promising areas of research. As parents we do not always know what is in the best interest of neuroblastoma research. To correct this problem we created a medical board of the top researchers in the country to help us make better decisions regarding funding. The medical board operates under the following directive:
Make funding decisions that are most likely to hasten research into the cure for neuroblastoma.
It is this design that guarantees your lunch money will be put to its best use.

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I have personally met the founder of CNCF and the creator of Lunch for Life and they are incredibly dedicated people.
Nathan has a giving tree on Lunch for Life. Every donation fills his tree with ornaments ( and gives our family a chance to win a trip to Disney World) .
A special code will give Nathan extra ornaments. That code is 32109.
Link to
Nathan's tree

Thanks in advance to all that give. I know we all have our charities we give to and in times like these we try to stick to those. So, no pressure here, just an opportunity for anyone who wants it!

Tuesday, July 29, 2008 8:49 AM CDT

Missing my little boy today as I do every day.

Wednesday, July 2, 2008 10:16 PM CDT

I just had to look for the photo I posted on the page tonight because I had another dream of Nathan last night. He suddenly appeared in the room and I saw him and I told him how happy I was to see him. He was wearing the pajamas in the picture and about that age and amount of hair too. He looked at me with a beautiful beaming smile and I picked him right up and hugged and kissed him. Luke walked up and I handed him over to Luke to hug and kiss. It was a very nice "visit".

Monday, June 16, 2008 4:18 PM CDT

Nathan should have turned eight today.

Happy Birthday, my beautiful boy.

Thursday, May 29, 2008 9:31 AM CDT

I got to see Nathan in my dreams last night. In my dream I was standing at the bathroom counter getting ready when I sensed a child coming in. I was getting ready to tell Julia or Lauren (crankily) that I was getting ready and just give me a minute. Instead Nathan walked in and came right up and leaned against my leg and hip. He looked up at me and smiled and I gave him lots of hugs and kisses.

That was the extent of it but it was so clear and Nathan was so happy and healthy. It was great to see him like that.

Wednesday, April 16, 2008 11:44 AM CDT

Just a quick note. Things are fairly boring around here I guess. The girls are doing well. Julia still attends the children's grief group that hospice has. She loves it and I think it is good for her. Luke and I have a parent group we attend as well. I can't say we really look forward to it. I am not sure how long we will do it but we continue for now.

We are busy with dance class for both girls and lots of church activities. Adding those to the two grief groups and we find our weekdays very full. For the most part, that is a good thing.

We miss Nathan every minute of every day. I have been thinking about his memorial fund lately and I hope to maybe start coming up with ideas soon.

Sunday, March 23, 2008 5:13 PM CDT

Happy Easter!

Saturday, March 1, 2008 10:32 AM CST

Thank you to everyone for your responses. I appreciate every one of you who visit Nathan's site and I feel better having your feedback on what to do with the site.

I will keep it open and I will also do a few things. I will add the slideshow from Nathan's memorial service which shows pictures from his whole life. I will also change the home picture on occasion. When and if I feel I can write and update, I will. This last part is what I have trouble with and I cannot make any promises.

In the last few days there have been so many things that we have seen or done that Nathan would have loved. TV shows, Garden of the Gods, books, the second grade school play. I can't believe he isn't here to enjoy those things with us and his sisters. It is so unfair.

We are "hanging in there". We are living life, having fun and missing Nathan and being sad all at the same time.

p.s. Please see the link above for Nathan's Network St. Baldrick's team. They have raised almost $30,000 in his honor! Thank you to everyone who has sponsored the team or team member and it is not too late to add to the amazing total.

Sunday, February 24, 2008 12:05 AM CST

I have a question for the very few of you who still read this site. I guess I am at a loss of what to say to you so tell me what you hope to read when you check this site.

I can't tell you about Nathan. All I can say is how much we miss him every minute of every day.

Thursday, January 24, 2008 9:23 AM CST

Once again I am here without much to say.

Julia had her 6th birthday on Tuesday. I can't believe she is already six! She was very emotional leading up to and on her birthday. She had her birthday at a place where Nathan had his 5th birthday party and said it would help her feel close to him. Then she insisted that no boys be allowed. I think she didn't want any boys if her brother couldn't be there.

If you recall, in years past my cousin has shaved his head for St. Baldrick's in honor of Nathan. Well, this year he created a team of shavees in Nathan's honor. There are many shaving their heads for the team and there are also people we don't know shaving for Nathan who have found his profile on the St. Baldrick's page. We are thrilled about this! Funds for research are so badly needed to help save more children. One of out good friends is a pediatric oncologist who does brain tumor research and she told us she, herself, is applying for a grant from St. Baldrick's this year to further her research. It brought home to me just how real and how important this event is!

If you are interested in donating please see the link above on the main page.

Also, I mentioned before I have another blog that I post to more frequently. If any you still reading this blog would like the link, you can email me through the link at the bottom. I can't guarantee I will send the link to everyone, but I think most of you would qualify - esp. if you are willing to email me to ask :)

Friday, January 4, 2008 10:04 AM CST

I ran across that picture of Nathan today and felt compelled to put it up on the top. I love his smile.

I have heard that guestbook signers have gotten spammed. Someone found the guestbook and harvested all your email addresses. I am very sorry this happened and I have contacted caringbridge to see if there is anything that can be done to prevent it from happening again.

Sunday, December 30, 2007 8:30 PM CST

We just got back today from a trip to Illinois to spend Christmas with Luke's parents and sister (and her boyfriend).

It was a really good trip and it was really as good as it could be without Nathan there with us. I am hoping he was able to "pop-in" and see us while we were there. One of his last wishes was to go to Illinois but he was just too unstable.

Wishing everyone a happy new year.

Tuesday, December 25, 2007 11:55 AM CST

Merry Christmas!!!

Monday, December 17, 2007 11:21 AM CST

I figured it is time to update - but once again I am not sure what to say. We have been getting ready for Christmas. I have been busy with choir and Julia with school and dance. I had my concert 2 weekends ago and Julia had her recital this past weekend. School is out for Julia and so we have to fill up our time. She had a snow day last week and was bored to death.

We went to a fundraiser for Flight of Hope - the organization who flew Nathan home for Christmas from NY last year. I spoke for a few minutes about what a precious gift this was and how important it was to us. I am not a good public speaker, but I had practiced a few times and actually did a good job and kept my composure throughout.

People are asking me how we are doing with the holidays. For me, it seems that the holidays don't make anything hurt more or less - just the same - we miss Nathan every single day. At the same time we are getting "used" to life without him. I don't particularly like that but it turns out that life rolls on despite anyone's wishes. that doesn't sound I want - it sounds cavalier - it is just that it doesn't seem right for us to have this new normal without Nathan but that is how it is.

Tuesday, December 4, 2007 4:07 PM CST

I took Lauren to the cardiologist today. It was a little nerve-wracking because after the cardiologist listened to her for a while he told me he wanted to do an echocardiogram. So - they did that (and Lauren was SO good - not a peep out of her) and the results are that she has a very loud "functional murmur". It is just the way she is built I guess. He is not concerned but wants to see her in three years as a follow up. That is a big relief.

After the cardiologist - we went over to our local IRS office. I got a letter yesterday telling me that I MUST have put in the wrong social security number for Nathan because someone else used it too. The letter told me to check the number and refile. It didn't tell me what to do if the number was right! So - I gathered up his social security card and death certificate and headed over. I was told that they will give it six weeks and if the other person hasn't filed an audit will take place and at that point I can give them my paperwork. It is really frustrating to think I have to prove he was my son and I had the right to file with him as my dependent. Perhaps someone else just made a typo and will correct their return and I will not hear anything else about this.

New pictures for November are up - please see the link further up the page or at the bottom.

Wednesday, November 28, 2007 2:08 PM CST

I took Lauren to the doctor today for her two year old check-up. She is the weight of the average TEN month old girl! 21 pounds. Her height is around 50th percentile. Her weight is listed as 1% because I guess 0% is not an option. Her doctor is not concerned because her growth curve looks good - it is just off the charts. She was 19 pounds at 18 months so she has gained 2 pounds in 6 months and is about and inch and a half taller (she is 33.5 inches). Her head is very small - that is in line with both Nathan and Julia as babies and toddlers. There is no concern about her head - she is speaking in complete sentences and has amazing comprehension. It's funny - because when you look at her body it seems normal in proportion but that is normal for an older child. She has none of the chub that toddlers are supposed to have.

We talked about how pale she is and that it is probably just genetics but we did a quick toe poke to check her hemoglobin. It was just fine at 12.3.

Finally - a listen to the chest brought new news. Lauren has a heart murmur. Most likely nothing to be concerned about but "because she is a Gentry" the doctor (her words) wants a pediatric cardiologist to listen to it. We already have a pediatric cardiologist thanks to Nathan's chemo and Julia's Kawasaki's disease. So - Lauren gets to join the fray. Why not!

I am trying not to worry about it. I have known plenty of kids with harmless murmurs. Even if it is a little more than that - I can handle anything short of a deadly disease. There is no exemption for the other children once you lose one child. There ought to be.

Friday, November 23, 2007 6:59 PM CST

I hope you all had a Happy Thanksgiving!

We have been busy since I last posted. Lauren turned two years old on the 16th. We left that afternoon to drive up to Denver and got on a plane in the morning. We flew to visit my parents in South Carolina. We spent the week with them and just got home today.

The weather was gorgeous and the girls got to romp on the beach and wade in the water.

Last Thanksgiving was spent in NY in the hospital. I was thankful to not be in the hospital but I wished that Nathan was with us - he LOVED to visit my parents and ride bikes and go to the beach.

We'll be busy in the upcoming weeks will all the holiday things, including mt choir concert. I will try to update again soon and post some new pictures.

Friday, November 9, 2007 2:59 PM CST

Nathan's remains are now interred in the Columbarium. Luke, Lauren and I went down this morning and Luke put them in. It was nothing formal. Luke just felt he should be there and so then I felt like I had to go too. Lauren had not clue what we were doing and it only took a minute anyway. It is a beautiful day - sunny and 70s. Lauren crunched around in all the leaves. I will post some pictures on the photo page.

The Lunch for Life campaign has begun again this year. All donations go towards neuroblastoma research. You can view Nathan's page and link to his giving tree here. I will also put the link at the bottom of the page.

I continue to follow the other neuroblastoma children we know. Although a few are relapse free after almost 5 years, many more of them are relapsing and dying. It is hard for me to believe sometimes that this can happen and then KEEP happening to children.

Thursday, November 1, 2007 1:44 PM CDT

I just wanted to let you know I put up pictures from October - see link in orange above. The girls had a good Halloween.

Luke and I went out to the cemetery yesterday and purchased a spot in a columbarium for Nathan's ashes. We have had his ashes for a while now and had originally thought we would get an urn and put them up in the house, but as time has gone by, it didn't feel like the right thing to do. Nathan is in heaven and his remains are not "him" and so we decided to put them to rest in a very lovely place under big trees near an old stone chapel. Neither Luke nor I ever wanted a gravesite for Nathan where we would visit and bring things. This place of rest for his remains feels right to us. The engraving should take place in a few days and then his ashes will be placed inside. If anyone wants to know where it is to see it you can email me and I will be happy to share.

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Monday, October 29, 2007 1:44 PM CDT

It has now been three months since Nathan died. How can time march on so fast without him?

We are busy with fall activities. We went to a halloween party on Saturday and we will carve pumpkins tonight.

Julia continues to be busy with dance class, grief group and church. Lauren is starting in on the terrible twos (she'll be two in a few weeks) and at the same time is the cutest little girl. She has a huge vocabulary and we have fun hearing what is going through her head. She adores her big sister and tries to be just like her. She misses Nathan and will tell us so. Whenever she hears the word heaven she gets excited and tells us, "My Nathan is in heaven". OF course, she doesn't understand what that means and I am sure she is hoping the some day we just happen to drive by and see him or something. We tell her that means we don't get to see him anymore.

Julia still draws Nathan in all our family pictures - standing there right beside us.

Later this week I will post October pictures.

Monday, October 15, 2007 2:14 PM CDT

Sorry for the lack of posting. Lauren came down with pinkeye after Julia and then we were busy getting ready for our trip.

We spent Thursday through Sunday in Seattle visiting friends. We had a wonderful time. The kids played really well together and we got to hang out with good friends. We even got a night out on the town with just the adults and had a blast.

It was quite a diversion from the grief. We talked about Nathan plenty, but it is somewhere he had never been and so there were no memories of him there to make me sad.

Julia goes to the kids bereavement group again tomorrow. She is looking forward to it. She is the only child who has lost a sibling. I was told there will be some more soon. That is a very sad thought. The parents talk while the kids are in their group and so if I end up not bringing Lauren I will do that.

I will try not to go so long without updating, though our lives don't seem interesting enough to update about too often!

Tuesday, October 2, 2007 8:52 AM CDT

We have all been sick with the stomach flu. Lauren was very unhappy at my birthday dinner and then threw up in the car on the way home. She didn't throw up again but had loose stools for a few days. Sunday evening I started feeling bad and was sick all night. Luke got sick later Sunday night as well. We sent Julia to school yesterday but she threw up in the afternoon and I had to go get her. Lauren was a real trooper since she felt 100gain but Luke and I could barely care for her. Today we are all feeling better. We'll take it easy today and hope to be back in action tomorrow.

Julia is supposed to have her first grief group tonight. If she is feeling up to it, I think I will take her. I think it will be very helpful for her.

It has now been two months since Nathan died. A year ago we were in New York. Both seem like a long time ago. We are getting used to being a family of four but it never feels right. Luke is in a houseful of females. I am the lone brown-eyed family member. These things did not used to be true. We miss our brown-eyed little boy.

Thursday, September 20, 2007 3:47 PM CDT

I doesn't seem that long since I updated but there doesn't seem to be much to say. We're hanging in there, day by day, and doing the normal things in life.

I keep thinking I really should update and then I find I don't have anything to say. It seems like this is so closely tied to Nathan that when I come to write, there is nothing there, just like Nathan is not here.

I have a personal blog that I have been writing in and that has been getting more of my attention. I created it when I felt like I wanted a place to put things not necessarily about Nathan and lighthearted stuff. I am not ready to give this up yet but I need to figure it out.

I do want to say Happy Anniversary to Luke. Today is our tenth anniversary. We never imagined spending it like this. We always thought we would take a blow-out vacation. Neither of us are in the mood to celebrate. I am going to choir rehearsal tonight. We may go out to dinner next Friday because that is my 35th birthday and we would just recognize both at the same time.

One of these days I know I will have some things to say about our life and activities - but I guess it is not today!

Sunday, September 9, 2007 9:01 PM CDT

I suppose I should wait to update when I really feel like it, but I don't, and I am. This past week was a hard one for me. The walls seem to be closing in on me.

We had an unexpectedly good day on Saturday. We went up to the outlet mall and took the long way home, through the foothills. We stopped at a river and sat on some big rocks and dipped our feet in the water. Afterwards we got some ice cream. The weather was beautiful and it was a very nice way to spend an afternoon.

We went to church this morning and I go earlier than everyone else. Afterwards, Luke carried Lauren and so it wasn't until after lunch that I picked her up for the first time today and we had a hug. For the first time ever she said to me "I love you, Mommy" It was so very sweet and just what I needed. She is so funny - she doesn't say a word when others are around. I think they would be shocked at her at home. She does nothing but talk in complete sentences and sing all kinds of songs, with all the lyrics! She is so fun.

Julia is up in her room, supposedly going to bed but talking up a storm, playing with something. Since Nathan died, she goes to bed with two lights on and we turn off one of them when we go to bed. Surprisingly, she does just fine that way. They shared a room, so it could have been a really big problem. She spends quite a bit of time up in Nathan's bunk bed, it seems to be her way of "visiting" with him. She is still sleeping under the "Nathan" blanket too.

Well - I am updated out now. Thanks for checking in.

Wednesday, September 5, 2007 3:19 PM CDT

Luke and I attended a bereavement group for parents last night. I can't yet say how helpful it will be, but I think ti will be good. We will meet every 2 weeks. Some people were not there so there were only 3 families. We had all lost a child to cancer. One of the moms is someone I already know.

The children's group begins in October. It will be the alternate Tuesdays from when the parent group meets. I guess I will be keeping busy... Right now Julia has swimming lessons Tues and Thurs (will end at the end of the month), Julia will start ballet after school on Mondays, Tuesday we'll be downtown for one of the grief groups, Wednesday evening we have church (downtown) and Thursday evening I have choir rehearsal (downtown). We try to take the old car downtown when we can, but the door handle broke off on Sunday! I need to call about that.

Lauren got into one of Nathan's old notebooks and scribbled all over the pictures he drew. I guess I need to start gathering things like that and putting them away. She saw me crying and asked "mommy sad?"

I went to the bank to inquire about the deposits to the memorial account. They are not able or allowed to give me a list of those who deposited. They have not forwarded any cards or letters either. So - I apologize I will not be able to thank people personally. You have been very generous and I hope we will have some good options when we start planning something to memorialize Nathan.

Wednesday, August 29, 2007 10:15 PM CDT

***** I just want to clarify that when I made the comment about Luke - it was because I summed up how the girls and I were doing, but I don't feel it is my place to do the same about Luke, a grown man. So - it is not like we are estranged or anything! Just not going to speak to his state of mind at such a difficult time.****

It has already been a month since Nathan died. How is it that life just keeps marching on?

Today has been a hard one. It is just so very sad. I don't recall the stages of grief but I know that I am just sad right now. However, my two daughters need their mom to function - so I am.

Lauren is talking more about Nathan. I have told her he died. So she will say that to me. The other day she saw a blanket and said "Nathan's blanket" and then said "I miss Nathan". Today she was telling me about how Nathan read to her upstairs in his bed. She even said to me "Nathan died" and when I said yes, she said "Fighting?" and so I told her it was cancer. Unfortunately, she has watched them play enough video games that I guess she has associated the two. She has been very clingy with me. I guess she is afraid I will disappear. Nathan is gone and also her grandparents who spent so much time with her this summer. She says to me constantly, "I want my mommy" and then just cuddles and lays in my lap. She will be two in November.

Julia is doing a little better. She and Luke will talk about Nathan before she goes to bed at night. She doesn't talk about him very much with me. She seems to be having fewer ups and downs. She is loving school and it is definitely a great outlet and diversion for her. She also started up swimming lessons again this week She will start dance lessons soon.

Luke is back in the swing of things, working. I won't comment on his state of mind - I suppose I don't really know what it is right now.

I was at choir practice tonight. I found out we are singing "Joyful, Joyful, We Adore Thee" on Sunday. That was Nathan's favorite hymn that we sang at his service. I am glad to get advance notice so I can prepare myself to sing it. We sang it a little bit tonight and I was just telling myself that I need to sing it with joy and not sadness, for him.

I will close by mentioning that we recently lost one of our neuroblastoma friends, Carter Finger. Carter was on the same trial as Nathan last fall and we got to know him and his mom and dad in New York. We are so very saddened by his loss. Our friend Owen Lea recently relapsed for the third time. We spent a lot of time with him and his mom last fall - they are a wonderful family. We are just sick that this happened to him. Our friend, James Runde, is currently on hospice. We met him and his mom last fall in NY as well. They are going through so many of the things we went through just a few weeks ago and it breaks my heart that another child and family have to go through this. I have also recently spoken with a mother who just lost her son to Rhabdomyosarcoma. We talked about what an awful thing it is to not only lose your child, but to have to watch them suffer and die a terrible death. So - my heart is very heavy right now. Childhood cancer is such a terrible thing. I wish I was the type of person who could do something about it. I know I am not. I could certainly help if the right person come up with a plan. Something has to be done.

Sunday, August 26, 2007 8:53 PM CDT

Sorry for the delay in posting. We had been thinking about taking a weekend trip and decided on Thursday that we should go - so we just got back.

We met my brother and his family at his house up in the mountains.

We had a really good weekend. We went to a ski resort with all kinds of activities, including an alpine slide which Julia and Lauren both loved. Today the kids played at the lakeshore while some of the adults went on jetskiis.

It was bittersweet because Nathan loved going to the "mountain house" and he would have LOVED the alpine slide. Not to mention the pure beauty of the nature surrounding us. I only hope he was watching us and enjoying it in his own way,

Julia had a good time playing with her cousin who is her age. She really misses having a playmate who isn't a "baby".

In the car we were talking about the fact that in September, we might get out first snow and she said "me and Nathan" and then corrected to "I" and talked about having fun playing in the snow this winter. It was really sad. They loved playing in the snow together.

It is hard to believe it has almost been a month since we have had Nathan here with us. Time goes too fast.

So, tomorrow we are back to our routine. I am still trying to get used to this new life.
*** update to below - the guestbook shutting down is the one attached to the obituary - not caringbridge******
By the way, someone mentioned in the guestbook that this site will be shutting down. As far as I am aware, that is not going to happen. Certainly not from my side and I have not received any notification. If you wouldn't mind - could you email whatever message you got to me? The email is on this page near the bottom. Either way - I am not going anywhere - even if that means moving the site. I have also archived all of the history - so no worry!

Thanks to any of you out there still reading.

Friday, August 17, 2007 3:04 PM CDT

** update - link to youtube fixed

Life goes on....

Things are OK, I guess. Julia has been enjoying school. She went for three days and there has been individual testing yesterday and today and so she has been home. She really needs to be kept busy. She gets so bored at home.

Luke got really sick on Tuesday and is slowly recovering.

I seem to have recovered from my medical stuff and I have a friend visiting for a few days. I made it to choir rehearsal on Tuesday, which was really nice. I miss singing so much when I take breaks from it.

We received the audio from Nathan's service. Thankfully they were able to exclude most of Julia's wailing from it until the end. I am putting it up on YouTube for anyone who wants to hear it. It lasts around 40 minutes. While you are there, you can see some videos of Nathan I have been uploading. I will continue to add more videos in the coming weeks. ***Update - it is too long for YouTube I put it on the page before the journal entry.

You can still see other videos of Nathan if you click
here and then click on "more from this user"

We are trying to get access to Nathan's memorial fund deposit records. I will let you know if we are unable to see the deposits and properly thank everyone.

Monday, August 13, 2007 7:40 PM CDT

Julia had her first day of kindergarten and seemed to enjoy it. I survived the day. I am so tired - I am not sleeping and having horrible night terrors as well.

I don't really know what to say. I felt I should update but am not really feeling very chatty right now. I promised to update again when I have something to say.

Friday, August 10, 2007 8:10 AM CDT

I am on the mend now. Julia is still a little under the weather but she is doing OK.

I had a wonderful dream about Nathan last night. We were lying next to each other chatting about all the things Nathan loves, trains, trucks, etc. He was just talking in his sweet voice telling me facts. I was whispering back to him and I think I was actually speaking out loud. It was a very nice thing.

Julia goes to see her kindergarten classroom today. It will be hard to walk back into school without Nathan. Monday, watching Julia get on the bus by herself will be even harder. They moved our bus stop by a block - it used to be at the end of our cul-de-sac. At first I was disappointed by that but now I think it is good, because I won't be standing at the same place I stood with Nathan.

Wednesday, August 8, 2007 4:02 PM CDT

I am starting to recover. I was sick all day yesterday but I think I am on the mend. Unfortunately Julia has a fever. I did not have a fever so I am expecting to catch whatever she has soon and be sick again.

How are we doing? Hanging in there, I guess. Next week my parents leave, Luke goes back to work and Julia starts kindergarten. Fortunately, my friend, Mina, is coming to visit so I have that to look forward to. It is already too quiet in this house with 2 kids instead of 3. Once Julia is in school all day it will be even quieter. How I wish it was because Nathan was in second grade.

Tomorrow we have to go pick up his ashes from the funeral home. We are very much dreading that trip. We are not sure what we will do with the ashes yet. We will think about that later.

Monday, August 6, 2007 9:25 AM CDT

In my last entry I said "Even though we are exhausted, we are not really sleeping. A crash of some sort is coming, I am sure."

It happened yesterday. I spent 8 hours in the ER. I had a cat scan. I'll spare you and me the details but am home now with a GI doctor consult and a minor medical procedure that I need to have performed at the gynecologist. I feel like I have been run over by a truck.

Saturday, August 4, 2007 7:10 AM CDT

I feel relief this morning that Nathan's memorial service is over. It has been very busy planning it.

The service was very beautiful and it was everything we hoped it would be. Poor Julia. She had cried since Nathan's death but she really hadn't let go. Well - she let got big time during the service. She wailed. She started in the middle during the solo and then kept on most of the rest of the time. I know that everyone in the church felt their hearts break listening to her, as did Luke and I. She recovered during the reception and started playing with the other kids.

Of course, I was very sad during the service, but I also felt a peace. It helped that I was surrounded by so many people who loved Nathan and loved me. It helped that I was in the familiar and comfortable presence of the church I love. It helped that the people speaking, one of the pastors and my choir director, really understood who Nathan was and were able to express that. We closed the service with Nathan's favorite hymn, one he would sometimes just start humming in the car as we drove, Joyful, Joyful, We Adore Thee.

Thank you to everyone who came to the service. That so many people felt moved to come, meant so much to Luke and I. Thank you to everyone who has signed the guestbook showing your support and love for us.

Luke and I are exhausted to the bone. Even so, we have taken this time to spend with the people we love who came from far away to be with us. It has been wonderful just chatting about whatever with our good friends, who we don't see often enough. Even though we are exhausted, we are not really sleeping. A crash of some sort is coming, I am sure.

I will write more soon. Though entries will not be as frequent, I will still update this site.

I may try to put part of the memorial service on the web. They recorded it for us. The part about Nathan's life is wail-free. I am not sure I will ever be able to listen to the rest and hear Julia's cries.

Thanks for being there for us.

Tuesday, July 31, 2007 7:09 PM CDT

Link to Nathan's obituary.

*******

Ok - I have final details, finally!

The service will be on Friday August 3 at 2:00 pm at First Presbyterian Church, 219 E Bijou St, Colorado Springs, CO 80903. There will be a reception in the fellowship hall following the service. The service and reception will be open to all.

Children are welcome in the service, and we will also have childcare available in the church nursery, upon request. Just so we can keep a handle on the number of kids/nursery workers we ask that you please let us know as soon as possible if you will be using the nursery and the number of children and their ages. Please email this information to Tonya Lark, larknest@msn.com if you aren't able to email her you can call her at 719-534-9997. She is also the person to contact if you have any other questions or concerns about any of this.

I promise to write a "non-business" entry soon.

Monday, July 30, 2007 11:33 AM CDT

Just a quick note - we still don't have a service time but expect to in a little while. I have been told there is a shortage of hotel rooms in town. If you need any help finding one, or would like to stay in a house (we know plenty of people willing to have you), need transportation from the airport, or have any questions about your visit in general, please contact my good friend Tonya Lark (larknest@msn.com) or 719-534-9997 and she will be more than happy to help you.

****
I just wanted to let you know that the service will be on Friday afternoon. We haven't nailed a time down just yet. There will not be a visitation, just the service. Children are welcome to come. There will not be anything geared toward children, but we would not be upset with the disturbances children might make. It will be a religious service followed by a reception. There will be no coffin present.

More details to come but I wanted to give a heads up for those who are going to travel. I will also provide some contact information to help with any travel details/lodging etc.

If you simply cannot make it here on Friday, please know we understand and we ask that you consider coming to visit us another time when we can spend more time with you.

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

I know many of you are wondering about when services will be held. We are still working that out but it will be either Friday or Monday afternoon. The service will be open to anyone whose Nathan's life touched.

We will have the final details either later today or tomorrow.

We are hanging in there.

Sunday, July 29, 2007 2:33 PM CDT

Nathan Michael Gentry took his last breath this morning at 9:22 am with his mom and dad by his side.

Sunday, July 29, 2007 9:08 AM CDT

Nathan had a terrible night. He was agitated and uncomfortable all night - crying out every 5 minutes. We were able to calm him a little with medications but not get rid of the pain/agitation.

At some point in the night he slipped into an unresponsive state but still cried out.

We called hospice back around 6:00 this morning and a nurse came out and finally gave him enough drugs that he is no longer crying out. I don't know that I would say he is comfortable.

We are waiting on another nurse to come out and switch his meds. He will switch to dilauded and they are going to put him on versed. The versed will sedate him and it is also an amnesiac. We hope that this will finally let him rest peacefully.

He is showing some of the signs that his time with us is short - but I don't know if it is hours or days.

Saturday, July 28, 2007 10:52 AM CDT

Nathan was able to rest OK most of the rest of the day. We adjusted some of his medications and the nurse practitioner stopped by. He is having more pain again but we think it is from constipation. He keeps crying out in his sleep from pain.

Now that the evening has rolled around he is more agitated again and one of the new meds we gave him isn't really helping so we may switch back to the other. I am sitting waiting for hospice to deliver a bedside commode. We are hurting him too much carrying him in and out of the bathroom and so we are hoping it will help, especially since he keeps thinking he needs to go and nothing happens. I am very impressed that hospice is delivering it on a Saturday night. I know they go out of the way for Nathan since he is a child.

As I sit here - I hear Nathan upstairs with Luke asking for something in his imagination and getting upset that we don't know where it is. We so much want for him to just be at peace. Earlier today he was scared and I said not to be and then he said he would try. I felt so bad, I was trying to comfort him but used the wrong words.

I cannot begin to describe the way his body has been ravaged. It is painful to look at him and see all his bones.

The nurse practitioner thinks he has days left, but it is hard to tell with kids.

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

Friday Nathan once again slept all day. Starting around 10:30 last night he started to get agitated and scared and once again saying things that didn't make sense. He was like that most of the night and so far today has been vomitting some awful-looking stuff and also needing to have a BM but not able to. He gets panicked when he feels the throwing up coming on. He finally is resting a little but keeps crying out in his sleep. The nurser practitioner is coming out to see him in a little bit. I will update again later.

Thursday, July 26, 2007 10:14 PM CDT

This one will be short tonight because Nathan didn't get out of bed all day. We checked on him here and there and he would just say he was tired. He actually sounded more lucid than he has been but he just wanted to sleep - so that is what he did all day. He asked to go to the bathroom a few minutes ago and Luke asked him if he wanted to take his pills and go to bed or get up and he said he would go to bed.

So - he definitely had a pain-free day so that was good. I hope he decides to get up for a little while tomorrow.

Wednesday, July 25, 2007 9:25 PM CDT

Last night was better but he will still up several times for several different reasons. None of the reasons were pain, though so that was good.

The nurse came this morning and he was still asleep. He didn't get up until 12:30 this afternoon. We brought him down to the couch and he mostly laid there with his eyes closed, occasionally saying something confusing. He keeps getting words mixed up and thinking memories are what is going on. He basically laid there like that the rest of the day. After dinner he asked for food and actually ate a few bites. He managed to say a couple of coherent things and then went to bed.

We finally sat Julia down to tell her that Nathan is dying. It is no doubt the worst thing we have ever had to do. She was baffled at the idea that there was nothing more the doctors could do. She was very sad. She kept saying how much she loves her brother. Times like these just leaving me asking why. Why do kids get cancer and why do some of them die an ugly painful death. Why should a little girl lose her best friend and have to be told that we just don't know why there was nothing more to get rid of the cancer.

We tried to talk to Nathan the other day about it, but when we asked him if he wanted to talk about what was going on with his body he said no. When we asked again in a different manner he said "not yet". So - we dropped it. We had to tell Julia that she could not talk to Nathan about it because he does not want to discuss it.

I am too tired to continue but I think that about does it for today.

Tuesday, July 24, 2007 9:35 PM CDT

Last night was not so good. Nathan woke up around 2:00 am with a foot cramp and he was just screaming in pain. He was pretty inconsolable and we moved him into our room and we finally gave him some ativan and he still barely calmed down. Once he finally started to calm down I laid down on the floor beside him and stroked him until we fell asleep. When I woke up this morning he very sweetly said hi and that he wanted to get up. However he could barely open his eyes and so I asked him if he was sure and and he said he would sleep a little longer.

He got up a little while later and came to the couch. He stayed there most of the day, mostly laying with his eyes closed but awake. He went back up to his bed at one point to try to use the computer but his coordination is just not good enough anymore. I helped him play a little game and then he said something strange about when were we going to talk about the walking (he has been more confused lately). I asked him did he want a walk and he said no, that wasn't what he meant. I told him he could have one in the jogging stroller and he said yes and he wanted to go to 7-11 to get a slurpee. So - we loaded him up and Luke took him there. He had it mostly gone by the time they got home.

He spent the rest of the afternoon on the couch - eyes closed. One of his eyes is becoming so swollen he will not be able to open it at all very soon. It also just seems as though his eyelids are too heavy to open. He will talk to us, here and there, in a very quiet voice. It is strange because we don't really know if he is a
sleep or awake and we are often surprised to hear him comment on something we have said when we thought he was sleeping.

He had a pain crisis late this afternoon that took 4 boluses and 2 doses of ativan to bring under control. After the second ativan I was sitting on the floor by him stroking his face trying to calm him and Lauren came behind me and hugged me. I said "I love you" and Nathan said, in a very slurred manner, "I love you too". He is still using please and thankyou when we are doing things for him. He is such a very sweet child at heart.

I guess I forgot to mention that we have decided there will be no more transfusions for Nathan. We do not want to do anything that will unnaturally prolong his life at this point, since all that the extra time will bring is more pain. Please pray that he does not have any external bleeding or start throwing up blood. Without any platelets, these are a possibility.

We are hoping for a better night tonight. I hardly slept at all because I have night terrors that get worse with stress and I had those for a few hours at the beginning of the night where something was trying to kill us and I kept jumping out of bed and leaving the room at which point I would become aware of what was going and and go back to bed only to repeat it all a few minutes later.

I will put a few pictures in the photo section. They are from a day or two ago and are actually a lot better than how he looks today even. They are not pretty, but I thought some of you might like to see what I have been describing.

Monday, July 23, 2007 8:22 PM CDT

I will try to briefly recap the past two days. It is such a blur.

On Sunday, Nathan slept until about 10:30. When he woke up Luke tried to give him some medicine to move his bowels and he threw a major fit about it and threw up and went back to bed. He finally got up again later but started having pain. By the end of the day he was in major pain and we gave him bolus after bolus. We kept him in our room with us last night and we could hear him moaning in pain from time to time. He also started throwing up bile periodically during the day.

The nurse practitioner came this morning and he upped his morphine dose to 25mg/hr and raised his bolus and made his boluses every 10 minutes instead of 15. He also put him on another pump with a steroid and a anti-nausea medicine in it so he will continuously get those. After he left his nurse came and checked him out and waited around for someone to bring out the new medicines and then got him hooked up. By then it was 11:00 and Nathan wanted to get out of bed.

He had a little pain around noon and then he started throwing up bile again and finally used the bathroom. He laid on the couch watching some video games and drifting in and out. Around 4:00 the pain started up again and he got 7 boluses in the next two hours before finally getting some relief. They sent a nurse out and they upped his rate yet again to 40 mg/hr.

He is currently dozing on the couch.

Sorry for not updating yesterday - I know you all think the worst when I miss one. I promised you that when the time comes I will update - even if very briefly.

Saturday, July 21, 2007 8:55 PM CDT

Not a very good day today.

Nathan got up around 8:30 this morning but was in pain and needed lots of boluses one after another. After 5 of them, he felt comfortable and went to bed shortly thereafter. We called hospice and a nurse came over and upped the rate of his medicine. After she came he woke up and went downstairs and ate a little bit. He went back upstairs to watch a movie in his bed and he started to get him pain again. He got a few more boluses right in a row and so we called hospice back again. They had us double the new rate. He is now on 18mg per hour. He wanted to come back downstairs after a while and he dozed on the couch until we finished dinner. I hand fed him some dinner and then Luke fed him some fruit. Afterwards we took him upstairs and washed his hair (hospice loaned us a device to wash his hair in bed) and I changed the dressing around his port. After that it was off to bed. Somewhere in there he worked a little with a lego. He couldn't do but a few pieces without getting tired.

While he was up in his bed watching a movie Lauren came up to sit by him. He was facing the other way but put his hand behind him to stroke her foot and her hand. He shows so little emotion and is barely moving anything, so it was really touching that he reached out to her that way.

Friday, July 20, 2007 9:10 PM CDT

Nathan slept quite late this morning. He was still in bed when the nurse came. After she left he asked to get up but after five minutes downstairs said he needed to go back to bed. He slept until about 1:45. I brought him downstairs and he ate a little. He needed several boluses. He watched me play a video game and then he got hot so we took him upstairs to our room with a fan and he watched TV up there for several hours. He went back to his bed to eat an early dinner and then fell asleep until 6:00. He woke up and I read him a book and then he said he was ready for bed.

So - he was only awake for about 4 hours today and he just kind of has a blank look in his eyes a lot of the time when he isn't engaged.

His quality of life has been very poor lately. It is really hard to see.

Thursday, July 19, 2007 10:37 PM CDT

Not long after Nathan got up this morning we got a call from the nurse practitioner who wanted to come by and see Nathan. We talked about changing his anti-nausea medicine and he offered Ritalin for Nathan to give him an energy boost. Nathan said he would want to try it. We then went into the other room to talk about the transfusion question.

I find that I can't really go into the conversation in detail - it is just too awful, but it was information we needed to know to help make the decisions about transfusing. It is very difficult because his bone marrow is failing and without transfusions, he will die in 1-4 weeks. However, transfusions are easily available but that doesn't mean they are the right thing to do. If we keep him alive with transfusions, the cancer will cause another problem and who knows what that will be. It really comes down to us choosing how he will die. It is really hard to get my mind around that this is something we actually have to decide about our child.

Nathan really wasn't very awake today. He wanted to be up and not sleeping, but he was so spaced out when he was awake. He watched some TV and a movie and the only other activity was pondering what to eat. He seems to spend most of his awake time trying to figure out something to eat and then eating a little bit of it.

His nurse is coming by tomorrow and that should be it for tomorrow.

Wednesday, July 18, 2007 10:33 PM CDT

Nathan needed only 2 or 3 boluses of pain medicine all day. It is a relief to see him having better pain control. I think the trade off was that he was a bit more sleepy today. He didn't spend a whole lot of time out of bed and when he was on the couch he really only engaged in something when we offered it. Otherwise he would have just laid there staring into space. So - it was a bit hard to see him so low today, but at least he was reasonably comfortable.

I debated about going to choir rehearsal tonight for many reasons, but I went and I am so glad I did. It was wonderful to sing again. Thanks, Big Blue, for your support and prayers and for making me feel comfortable being there tonight.

There are no plans for tomorrow. We expect to see the nurse practitioner sometime soon - but we haven't heard from him. I am hoping that tomorrow finds Nathan a little less groggy but still with good pain control.

Tuesday, July 17, 2007 9:27 PM CDT

Last night was a good one. Nathan slept all night without a peep. He got up around 8:00. Unfortunately the pain started almost right away and by the time the nurse arrived at 9:00 he was moaning in pain. She quickly got in touch with the nurse practitioner who ordered his infusion rate to be raised. So he is at a higher dose now. After 14 boluses yesterday it was time.

After she left, Nathan ate some "breakfast" (chocolate cake and corn) and then took a nap until it was time to go to the clinic. While he was sleeping we had a TV repairman come. It figures our TV would break now, when Nathan's main activity is lying on the couch watching TV. He took a part away and promises to come back with the repaired part in a few days for $450. Oh well. We wrestled an old TV up from the basement and now there is at least a TV to watch in that room.

We took Nathan to the clinic mid-afternoon. He had some pain from up moving him around and he also had to be off his pain pump while he got the platelets. So - we stopped a few times and gave him some IV morphine during the infusion.

He napped again after we got home until after dinner. He did eat some dinner in his bed and I gave him a sponge bath and he went to sleep.

He seemed really frail today and his eyes look awful. We checked is oxygenation at the clinic and it is in the low 80s (should be near 100). His doctor said that was lower than being severely anemic normally causes. So - who knows why. Nathan isn't at all uncomfortable with his breathing and he definitely does not want to be on oxygen - so we will just keep an eye on it.

Back to the nurse. We were very pleased with her. She is not the calm quiet type so I was a little concerned she would be too much for Nathan but he responded well to her. Just the fact that she saw Nathan's pain situation and immediately called the NP about it was a big step up. She took her time and made sure to ask if we needed anything and really listened to us and to Nathan. She has only a month working at Hospice, but hopefully that won't be a problem. She has some pediatric experience in the ER. I know they only have a handful of nurses there who are willing and comfortable enough to work with kids. Anyway - Luke and I feel like she will be a good fit.

Julia and Lauren went with my parents for the day and swam at the pool where they are staying. It was nice for them to get a break from the monotony of being at home.

I finally put up some pictures from May and June on our family web site - you can see them in the link above or below.

Monday, July 16, 2007 9:13 PM CDT

Yesterday Nathan was pretty tired and needed more pain medicine. Today he also seemed pretty rough and has needed extra pain medicine when awake. I took his blood in this morning. He has basically no platelets and his hemoglobin is really low again.

We plan to give him platelets tomorrow and are not sure about giving him blood. Why would we want to energize and wake him up only to deal with pain? So - we will see.

Nathan's nurse called this morning to tell us she was plannign on coming out tomorrow when his morphine bag would need to be changed. She quickly asked about Nathan and then changed the subject. When I told he he was feeling really rough she just said to give him more pain medicine. She didn't even inquire as to how he was feeling bad. That was enough for us to decide to call the social worker and request a new nurse. We have talked to her on the phone and I can tell she is not the ideal personality, but as long as she respects what Luke and I want, takes her time and really listens and takes her time she will be OK. We'll see....

The social worker was going to have the nurse practitioner come back out to talk over our transfusion dilemmas with us. Nathan's gums were bleeding tonight. When he has no platelets he is in big danger of uncontrolled bleeding. So - we are giving him platelets, but only about once a week. So - it really means he has platelets for something like 4 to 5 days out of 7 and then for those few days he doesn't. So we are really just taking a gamble. It seems like we should either keep his platelets up or not, but at the same time, it doesn't seem reasonable to drag him out to the clinic to transfuse him every 4-5 days either. So...we are still trying to figure it all out.

His eyes are looking awful again. All yellow and brown bruises and puffy.

To end on a nice note - he woke up to eat some dinner and Lauren came up. She picked out a book and he read it to her. Then he watched me play with her and said how cute she is and enjoyed her giggle. These moments are so few and so precious.

Sunday, July 15, 2007 8:24 AM CDT

Nathan slept a little late yesterday morning. When he got up I asked him if there was anything he would like to do and suggested some things. He wanted to go out for lunch. By the time lunch came he was nauseous and very sleepy. I gave him some nausea medicine which knocked him out. We left him sleep it off for a few minutes and then went to the restaurant. Surprisingly he seemed to enjoy himself and ate pretty well. He needed some extra pain medicine and we kept him in his wheelchair. He went to bed pretty soon after we got home and slept until 5:00 pm.

He stayed up after dinner watching some Scooby Doo. The nurse came by to change his pump tubing and morphine bag. I changed his dressing around his needle. They told us we do not have to change the needle every week if he doesn't want us to, but for my peace of mind I wanted to change everything else and clean around it.

He went to bed at the normal bedtime and slept pretty well, waking up once for a bolus of pain medicine.

He is still asleep this morning (only 7:30).

It has been 5 days since his last platelet transfusion so he probably has almost none left. I am guessing he might get some tomorrow afternoon. I will draw his blood and bring it in tomorrow morning.

Saturday, July 14, 2007 8:38 AM CDT

Just waiting until morning it is hard for me to remember details of yesterday. Nathan got up around 8:45. Well - If I recall he was actually up around 4:30 for a while. Anyway - he was having more pain and lots of gas in his abdomen. The nurse called to say she was not going to come see Nathan. I told her we felt he needed a higher dose and she told me to wait another day. She asked me was I pushing the button every 15 minutes - well no, of course not. Luke and I felt he should have far fewer doses.

I called her back a little later to say that he was still getting more boluses than we wanted and so she said she'd send someone over later. Nathan went for a nap around 10:30 and slept until 2:30 when a nurse came to up his dose.

The nurse told me that the nurse practitioner said we were to call if he had more than 3 rescues with the new dose. We feel better than even if the nurse is not on the same page as us, the NP and doctor are. As you can tell, we are not so happy with the nurse. We have had several other nurses come by besides her and we like every one of them better so we may be changing. She is due to come out on Monday and unless we have a better visit and feel more respected by her we will ask for a change.

Nathan had a pretty good afternoon after he woke up. He was dealing with lots of gas though. His abdomen was visible distended by gas and it was pushing on his rib - which is a place he has pain anyway. We got him some gas medicine and he took a little nap and then ate dinner in his bed. Unfortunately he threw it all up right afterwards. We came downstairs and he helped me make some pumpkin muffins. One of his cravings has been Panera Bread pumpkin muffins and they are not always easy to get so I found a recipe. He really enjoyed helping me make them and when I brought him one to eat after it was cool enough I got a real Nathan smile - something that is rare these days. Here is a picture:

He had a pretty good night and is laying on the couch watching TV this morning and has needed one pain rescue so far.

Thursday, July 12, 2007 10:08 PM CDT

Today was a decent day.

Nathan got up around 9:00 (well - he was up around 4:00 to use the bathroom and he got a bolus of pain medicine from his pump). He actually decided to use the computer for a little bit and he sat at the computer desk.

He played some video games, watched TV and built a small lego toy. Oh - and also helped his Grandmother prepare a ham. This was a pretty good day for activity.

We are pleased with the pump so far. We feel that the base dose that he is getting continuously is not high enough, but that can be adjusted tomorrow. He didn't seem to have any extreme pain today but he did get 10 rescues (via the pump) between 4 am and 8 pm. He was not overly sleepy either so we'll see if the nurse agrees that he needs a higher rate. He did take a long afternoon nap. He was getting very cranky before it and so we were glad that he did. We woke him up for dinner and he didn't feel up to coming to the table but did come down for the cake. I will post a picture on the photo page. His face looks misshapen but it is only from his crooked attempt to smile. His bruising around his eyes has faded. It is something that can come and go - as it did at diagnosis.

So - we expect the nurse to come tomorrow and that should be about it.

Wednesday, July 11, 2007 9:23 PM CDT

It was a very busy day today. I took Julia to her swimming lesson and when we got back the nurse practitioner arrived. We talked about the pain control issues and Luke and I were very impressed by him and feel comfortable with him advising the nurse. We decided to put Nathan on a continuous morphine pump. Actually they would have but him on a dilauded pump but I have such bad memories of Nathan on IV dilauded for antibodies that I really wanted to try the morphine first. We knew the pump was an option but were afraid Nathan would really not want to be hooked up. He was fine with the idea when we asked him and so he will be hooked up later tonight.

We also have a cream that we can massage into his areas of pain that has methadone in it.

The social worker arrived right before the nurse practitioner left and so she chatted with Nathan for a few minutes and then Luke and I went down to the basement with her to talk privately. We were able to talk about some of the issues and questions we have and she has a lot of experience with children and so she should prove to be a good resource for us. We don't know when the right time will be to talk to Nathan and Julia about everything but I think we agreed it is not quite yet.

Nathan had a long nap in the middle of the day and a short one right before bed. He got up a few minutes ago to eat and will probably go to bed again soon.

We had what seemed like 5 millions phone calls and a several people coming to the house for various reasons today and we are tuckered out. If you called and left a message I will get back to you when I have the energy!

Tomorrow should be a much more calm day with nothing medical scheduled. Julia has a swimming lesson and tomorrow is Luke's birthday. As you can imagine, he is not exactly in the mood to celebrate - but Julia wants to make him a cake so we will do that. Luke will be 34 and according to Julia - 60 comes after that....it kind of feels that way lately. I guess I will turn 60 in September!

Tuesday, July 10, 2007 9:55 PM CDT

I am way too tired to update well today. So - sorry in advance.

Nathan slept in fairly late this morning. His pain seemed to be under better control. He was up for a while and then went to bed. I got a call from the clinic around 11:45 that they were heading out to get Nathan's blood and platelets and that we should come in. We weren't expecting that to happen today after hearing nothing. Nathan had just gone to bed but luckily right after I hung up the phone he called to us for some food to eat. So we got him up and went in. He was fairly chipper while we were there and even sat up and played some video games. After a while he went to sleep and when he woke up to leave he threw up and felt crummy.

He perked up after dinner and wanted to ride his Gator and did so for a little bit and then sat on Luke's lap in the grass. He then asked Luke to walk him around the cul de sc a bit. He was watching Julia flit about I think he was wishing he could do it to. He then came inside and then worked on some Legos for a few minutes before bed.

Tomorrow the social worker is coming out. I am not looking forward to that and the conversations we will need to have with her.

I took Julia to the dentist today. The dentist knew Nathan wasn't doing well but when I told him the situation he started crying. Makes me thankful for Caringbridge because if I had to tell people that more often it would be even worse.

Monday, July 9, 2007 10:30 PM CDT

It was a LONG day today and I think I will only be able to summarize.

Nathan had tons of pain today. His hospice nurse came to see him and that is when it started, partly because we tunred off the TV for him to talk to her and he lost the distraction he had been using. He had told Luke that the day before he had pain all day and the medicine had never gotten rid of it - so he was on the edge.

It turns out they could not draw his blood without an order, so I just drew it and brought it to the clinic.

His platelets were at 7,000 and hemoglobin at 5.6 That is very very low for both. His oncologist thinks Nathan would benefit from the red blood. He is going to talk to other doctor to see if Nathan can get it in the clinic.

I talked to him a little of my frustration about pain control and having 3 or 4 people telling me what they think we should do. Hospice is sending a nurse practitioner out to see Nathan so that will be yet another person. Nathan's doctor told me he really wanted to call the pain doctor we saw last week and so that is the plan. He didn't hear back from him this afternoon or this evening so we are just waiting - also to decide what to do about transfusions.

I am so thankful for Nathan's oncologist - we'd be completely lost without him right now. I feel confident we can get things in order with hospice but that it will take some time and perhaps a little stepping on toes.

As I said before - Nathan was in major pain much of the day. Despite that, he insisted on coming to sit at the dinner table with his grandparents and staying awake to be with them. He stayed up late to watch some movies in his bed and Luke said he was literally shaking his head to keep himself awake. I finally put Julia to bed at 9:00 after waiting for him to go to bed and then he decided to go to sleep too.

So - I don't know the plan - we see what tomorrow brings. He will be transfused either tomorrow or Wednesday.

Sunday, July 8, 2007 10:34 PM CDT

Nathan is about the same. He pretty much napped and laid on the couch today. He did laugh and enjoy some of the TV he watched today, which was nice to see. He had some oral pain meds and two times we gave him the IV morphine. He sleeps more when he gets that because it makes him go to sleep almost instantly and then he goes up in his room and naps. He wants to be in his quiet room, alone, when he is sleeping and so we miss him when that happens. We also gave him a bath and after that he was really wiped out and went to sleep.

We are hoping to get a nurse to come out and draw his blood tomorrow and possibly give him platelets Tuesday or Wednesday.

Saturday, July 7, 2007 10:59 AM CDT

As I said in the previous entry, Nathan was sleepy all day Thursday. Right around the time Julia was going to bed, he woke up sobbing and not quite coherent. After he calmed down he got upset that it was bedtime but still very light outside. I read him the Robert Louis Stevenson poem, "Bed in Summer" and then he got upset he missed dinner. So - we put Julia to bed and got Nathan up. He had some food and then he and Luke played "Mario Party 8" until almost 10:00 and then he went to bed. We expected him to sleep in but he got up with Julia around 6:30. He was awake, grumpy, eating alot and watching TV until around 2:00. He napped for a couple of hours and then was up again until around 6:30. He got up first thing in the morning again this morning. He asked me why he couldn't walk and I explained about the cancer in his legs and spine (I have told him before) and he told me that it wasn't any fun if he couldn't walk. I agreed and told him he could ride his gator. I have been waiting to trim the bushes so that he could help with the clippings in his Gator. So - we went out this morning and he drove the clippings to the trash can and helped to dump them out. In between dumpings he reclined in a lawn chair. I think he enjoyed it, but it tired him out and he just went to bed.

Late last night we finally received the IV morphine but hadn't had to use it until a few minutes ago. All the exertion did him in. He didn't have a whole lot of pain medicine yesterday and when he did, now that we know how much to give him, I think he was a little more comfortable. He is never free of pain when he is awake and we suspect it is quite a pit of pain and he just deals with it. He often rejects pain medicines.

He has started to fuss about taking his oral meds. He doesn't have many so we explained what each one was for and gave him the option of taking them or not. One is three times a day and we compromised on twice a day.

The hospice visit was pretty easy. We signed all the forms and talked some things over. Last night a nurse came over with his pain medications and some supplies. His regular nurse should come out early next week.

My parents are arriving today. We are all looking forward to that.

Thursday, July 5, 2007 5:19 PM CDT

Nathan continues to be very sleepy. We woke him up to take him to the clinic. Luke came with me today because we were just feeling that Nathan was quite frail and I wanted some help.

Nathan's eyes have gotten dramatically worse. He now has dark bruising. His face also looks a little off. He either has swelling or tumor in his jaw. When the doctor asked him, he said his jaw was hurting a little and just started yesterday.
His platelets were at 2,000 and hemoglobin at 7.6.

His doctor took us aside and told us (what we already had discussed amongst ourselves this morning) that Nathan's disease seems to be progressing more rapidly and he now feels that Nathan has days to weeks left, rather than weeks. We decided that we did not want to give Nathan red blood. He doesn't need to spend hours in the hospital. He will just get more sleepy with a low hemoglobin, but it shouldn't cause him any distress. We reiterated that we do not want to stop platelets yet, that we do not want Nathan to have a catastrophic bleeding episode, especially not in front of his sisters. We discussed the option of going on hospice and just paying out of our pocket for the transfusions if needed (keep reading for more about that below). I think we all felt that we would know when it was just too much to even bring Nathan to the clinic for platelets and that would be the time to stop.

The palliative care doctor came out and we had a very productive and helpful visit. He tried to talk to Nathan a bit, but he is so sleepy and out of it that it didn't go very far. We put Nathan up in his room to bed and then spoke with the doctor. Julia was gone and Lauren asleep so it worked out well.

We found out that the pain medicine rescues we are giving Nathan are way too low due to the high amount of narcotics we are giving him through the patch. We were relieved to hear this and finally get some guidance. He can also get us IV morphine at home so that when Nathan has break-through pain we can get him immediate relief instead of an hour of screaming pain. Once again, great relief about that! We needed this consult LONG ago and were dissuaded by the other doctor to get it.

The biggest news is that the doctor said we can put Nathan on hospice and get platelets. He said that there will be a point where we will have to stop and we agree with that but it sounds like they will work with us. He said that we shouldn't have to choose between getting the support we need and giving Nathan platelets. Of course, we couldn't agree more. He said he has the authority and will make it happen.

So - we have an appointment tomorrow morning with hospice and will sign him up. They will provide the IV morphine. We will also be signing a DNR order for Nathan. They do not insist we do so, but we already know we would not want him given CPR or otherwise resuscitated.

I will update again tomorrow.

Wednesday, July 4, 2007 11:05 PM CDT

Nathan slept for most of the day. He tried to get up in the morning and then went right back to bed. He got up around 10:30 and had major pain for quite a while. He went back to bed at 2:30 and has stayed there ever since. Tomorrow will be hard on him because he has to go get platelets. In the afternoon the palliative care doctor will come and I think we will probably get Nathan on a fentanyl pump in a day or two.

His left eyelid is becoming more discolored today. I will also ask about the possibility of radiation to his orbits to try to prevent him from losing his sight.

Tuesday, July 3, 2007 8:58 PM CDT

It has been a very rough day. Nathan has had a ton of pain. The reason is partially because he was determined to work on a Lego Star Wars toy despite the need to sit up to do it. He worked on the toy and held back loads of pain and then he would stop and be in screaming pain. This happened several times today for extended periods of time.

I took Nathan in to the clinic this morning and they gave him about 8 mg of morphine on top of his 50 mcg fentanyl patch on top of the 20 mg of moprhine he had already had and also in addition to 1 mg of dilauded. His doctor said "if you or I had had that much..." and I said "we'd be knocked out?" and he said "maybe permanently!". We stayed for about an hour and then Nathan said he wanted to go home and go to bed. He slept for a few hours.

He didn't need any platelets yet and so he is set to get them on Thursday morning.

The rest of the day consisted of more Lego and more screaming pain. We tried to add a new pain medicine that didn't seem to do a thing (methadone) and we also added neurontin, which should help with the nerve pain.

We finally got the pain under control long enough for Nathan to go play with the Lego (finally built thank goodness) with Julia. They played together nicely for about an hour (he laid on the floor). He hasn't played with her for a long time and mostly wants her out of his sight, which is really awful for her. So - that was one really good thing about today.

We are looking forward to the Palliative care consult on Thursday. We got a letter detailing their services and it seems to be exactly what we need right now. Pain expertise, access to 24 hour phone consult, home nursing, access to referrals for emotional support and most of the hospice services but being paid for by our insurance and not hospice. As usual - money is the big factor here. We have good insurance and so it is not a problem to the the insurance policy being used instead of hospice.

I put a few pictures on the photo page. You can kind of see that Nathan's eyes are puffy and his eyelids yellowing. He most likely has orbital disease and will probably have black eyes very soon....

Off to watch a movie and try to escape today.

Monday, July 2, 2007 2:59 PM CDT

Nathan did fine with his transfusion on Saturday. Unfortunately he had some severe pain later in the day and so we changed his pain patch the the higher one. He slept in pretty late on Sunday but did get up and stay up after that. He is still having problems with vomiting, but not quite as bad as when he was not on the anti-nausea medicine. He has been mostly on the couch the last few days. He has been fairly grumpy still. He is always asking for food and none of it sounds good and we have to repeat what we have 10 times a day. I finally got fed up and made him a menu this morning. I am hopeful that it will solve that problem for a few days anyway.

He is taking a nap right now. I called the palliative care center and the doctor will be coming out to see him on Thursday. I still don't know if any other services will be available- I suppose we will find out then.

Tomorrow I will run his blood to the clinic and he may go get some platelets. He is really due on Wednesday so if they are not too low, we may be able to wait until Thursday.

Saturday, June 30, 2007 12:50 AM CDT

Nathan is having a blood transfusion today at the hospital. His hemoglobin was 6.3 - which is quite low. Yesterday he got platelets at the clinic.

We have him on an anti-nausea drug now that we hope will stop his throwing up. He has been having more pain again the last few days. Today he seemed quite perky, but he has been at the hospital all morning (with Luke and his sister) so I don't know how he is right now.

I got to talk to Nathan's doctor about some questions and decision making issues I had and though I didn't really learn a lot - I feel better. He wants to keep giving Nathan platelets until Nathan is so ill that he can't physically come in and get them.

We are also going to sign up with the Palliative care team to kind of get our foot in the door with hospice since it is all the same caregivers. Hopefully this will help us feel we have somewhere to turn if things go south quickly.

Thursday, June 28, 2007 9:54 AM CDT

Nathan had a pretty good day yesterday. He was more tired and was in a little bit of pain and more cranky. He went to Blockbuster and spent a gift card (Thanks Christine W!). The had buy one get one free used video cames and so he got two games. After that we picked up Julia from Vacation Bible School and went out to lunch. He was quite tired but in good spirits. He laid low the rest of the day but stayed awake.

This morning he seems about the same as yesterday. I can tell he is in some pain, but he just deals with it. He rubs his index fingers when he hurts and he is doing that almost constantly. I talked to him about the more powerful pain patch since he needed a new one on today. He decided the lower dose he has been using is what he wants. I told him the higher dose may make him very sleepy for a day or two.

Right now he is playing games on my laptop while lying on the couch. I think we will just stay at home today. Luke's sister, Anna, is coming in tonight to visit for the weekend. I am sure Nathan will be very happy to have her company for a few days.

Tomorrow I will take his blood to the clinic in the morning and then probably Nathan in later in the day for platelets.

Tuesday, June 26, 2007 10:10 PM CDT

I am so pleased to be able to say that Nathan finally had a good day today. He woke up feeling well and came to sit at the table to play with a toy. Luke was getting ready to take the dog to the kennel (we are having some work done to our house and she was not very happy) and he said he wanted to go. So - we went to the kennel and then to Wal-Mart so he could pick out some food. He played some video games when we got home and then I took him and Julia to see Shrek the third. They both really enjoyed it. When we got home he rode his Gator for a few minutes and then he and I played some board games until dinner. I left after that for choir rehearsal but he was getting ready to have a bath. So - it was an active day with only one pain rescue at the end of the day, that was clearly from all the activity (even a little walking) he did today.

Because he felt so well we did not up his pain patch. We will wait until it seems like he needs it again.

Who knows what tomorrow holds - each day is a surprise. So I only hope he has another good day soon.

Thanks for everyone who signed the guestbook. We appreciate knowing we have your love, prayers, and support. I am no superwoman, however. I am a Mother - and what mother would not do anything at all for their child? The strength I have I feel very blessed to receive. Your support adds to that strength and I thank you.

Monday, June 25, 2007 10:06 PM CDT

Nathan actually got up at a decent hour this morning and had some breakfast (on the couch - where he eats most of his meals not). He spent a few hours there watching TV. He was in pain but it wasn't severe pain. He asked to go to bed about an hour before we went to the clinic. He slept until we left.

I was anticipated seeing his regular doctor since he had told me we would talk about some things "on Monday". However, he had the day off and so not much was accomplished. Nathan's platelets were 8,000. The doctor asked me if we still wanted to transfuse. Nathan was there and so we talked all around the fact that if Nathan didn't get platelets he will bleed to death. I basically said that I needed to understand the other likely ways this disease would progress to make that decisions and so for today, we want the platelets. I was already contemplating all this this weekend and trying to figure out the best way for your child to die is not a good thing. More information is definitely needed at this point.

So - we waited around for quite a while for the platelets to arrive and then got them and went home.

We have a new prescription for a higher dose pain patch. We will put it on in the morning and hope it doesn't make him sleep for days.

Nathan ate about 5-6 meals today. He is so terribly skinny so it is nice to see him eating. He played a lot of video games this afternoon and evening. He is very cranky and paranoid. Any small noise that escapes my mouth is analyzed by him. I think he is worried about what I am thinking. I don't know how much he knows about what is going on with his body. A book I am reading says that young children do know if they are dying. It is not something we are prepared to discuss with him unless he brings it up, for now.

There is no next appointment set for Nathan. I will probably bring his blood in Friday morning and then probably bring him in later for platelets. He may need blood by then and I think we will ask to do that on Saturday. He has to get that at the hospital so it doesn't really matter what day of the week.

Sunday, June 24, 2007 1:08 PM CDT

evening update:

Right after I wrote this morning Nathan asked for pain medicine and needed it off and on all day. He did stay up most of the day either on the couch or on a mattress on the floor. Luke spent an hour or more just rubbing his head to soothe his pain. He is still having pain in his upper left abdomen.

He looks really pale and also like he has almost no platelets. His appointment is at 11:30 tomorrow but I am thinking about taking some blood in earlier so we can know his counts and plan for the day.

I am hoping we can figure out the abdominal pain with some non-invasive test. I'll see what his doctor says tomorrow.

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

Yesterday, Nathan spent almost 100f the day in bed. He got up at dinner and Luke fed him and then he played a little Lego Star Wars.

He got up around noon today and is sitting on the couch eating some lunch. So far he has not had any pain. I am hoping he will continue to be pain free and awake a little more.

He goes to the clinic tomorrow.

Friday, June 22, 2007 10:31 PM CDT

I knew we were due for a bad day soon. Last night we discovered Nathan's pain patch was a good part of the way off. He had a new one waiting at the closed pharmacy. He started having some pain later in the night and was up in the night as well.

He was tired, drugged out, throwing up, and in some pain all day today. We did get a new patch on as soon as the pharmacy opened in the morning and we are hoping tomorrow will be better. We think he got constipated from the extra narcotics and he is having severe pain in his belly that may be a result. He is finally sleeping peacefully a couple pain medicine rescues.

We did get him to come out of bed for a visit with his first grade teacher and her boyfriend and he seemed to enjoy chatting with them. Thanks again for coming, Sonia and Eric!

Luke's parents left today and it was hard to see them go. Nathan was very sad when they left but he recovered fairly soon afterwards.

Poor Julia is bored stiff. We have a possible plan for next week and then I am looking into some other options for July. Lauren was horribly cranky today and she kept asking for shoes and to go somewhere. Hopefully this weekend will be better. I have a choir meeting in the morning so they will be stuck home for a while unless Nathan is better enough for an outing.

Thursday, June 21, 2007 8:15 AM CDT

Thursday evening update:

Nathan had a good day today. I think the radiation is starting to work because there was a huge difference in his use of his leg today. He walked quite a bit and far more steadily today. He also seemed to feel pretty good. I had an errand to run at the mall (actually to get a handicap parking pass) and he wanted to come. So he came with me in his wheelchair and was good company.

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

Nathan needed some platelets yesterday, as expected. =They had gone down to 5,000. His regular doctor was back from vacation and so it was good to catch up with him. Nathan had actually not been to the clinic in almost two weeks since I had taken his blood in last week and then we went to the hospital. So no one had looked into his left leg weakness. His doctor did some tests and definitely detects the weakness. We knew the radiation could help but didn't think it had yet but we didn't know how much of the problem was disuse of the leg. So we will continue to hope the radiation will help him regain the use of the leg.

Nathan had no rescues for pain yesterday. He was a bit cranky so I suggested a nap, but then he woke up crying from that. He seems chipper this morning so I hope he has a better day emotionally today.

Luke's parents are leaving tomorrow. They have been a wonderful help and company. The kids will be very sad when they leave. My parents will come in a few weeks. So - we are hoping that Nathan stays as stable as he has been for the next few weeks while we are on our own.

Nathan will go back to the clinic on Monday when we will discuss possible chemo. We scrapped the last round because he was having so many problems and we didn't want to add anything to the mix.

Tuesday, June 19, 2007 10:44 PM CDT

The past two days have been pretty good. Nathan hasn't needed many pain rescues and had been feeling pretty good. Yesterday he wanted to go to Toys R Us to use a gift card so we took him there. He started hurting on the way home but then went and played with his new toy. He has been spending a lot of time laying on the basement floor playing with toys. So - he feels well enough for that - which is good.

Today I offered to take him out somewhere and he chose the zoo. So - we went for just 2 hours and he was in the jogging stroller. He seemed to have a good time. i got him to eat dinner at the table by telling him he couldn't watch TV and he might be bored. I could tell he felt well enough to come to the table but pf course eating on the couch in front of the TV seemed like a better idea to him. It is hard to balance he needs with those of the rest of us, but I am starting to get a feel for when he is feeling well enough to participate or follow house rules.

Tomorrow he goes to the clinic. I am guessing he will get some platelets. Julia is going to the cardiologist for what I hope is her last echocardiogram. She is still being followed after having had Kawasaki's Disease in 2005. Her heart has been fine ever since a few weeks after treatment and I think she will be cleared after this.

I will hopefully update tomorrow.

Sunday, June 17, 2007 10:37 PM CDT

Happy Father's Day!

Today was a better day. Nathan got up pretty perky and went and played in the basement with Julia. My brother and his family came to visit for the day. The kids all enjoyed each other. Nathan crawled to wherever he wanted to go in the house and they went outside later on and he rode his Gator. We had the sprinklers on and so he rode his Gator through them while Julia and Kadin ran through them.

They brought Nathan a small iPod for his birthday and he loves it. We got a kick listening to him sing along with his favorite songs. Nathan ate dinner at the dinner table for the first time in a few days and stayed up playing the Wii until bedtime.

Nathan is very reluctant to try to walk but we told him he will need to try again soon. At this point the weakness will be just as much of a problem as the cancer. He gets teary when we try to talk to him about it. He has been very emotional lately. He tries to put on a brave front but when he gets upset he can't control himself very well.

Thanks to everyone who has been signing the guestbook and sending emails. It is nice to "see" some of you lurkers and nice to know you are visiting! All your support means a lot to us.

Saturday, June 16, 2007 10:33 PM CDT

Happy Birthday to my SEVEN year old!

Today wasn't great but could have been worse.

Nathan slept in pretty late. He was up once in the night in pain.

He laid on the couch and opened some cards and then after a while he got his presents from Julia and his grandparents. He got more Playmobile and got off the couch and played for quite a while.

He helped make the noodles after lunch but didn't last too long until he was back on the couch. After Lauren woke up everyone but me went to Panera. Nathan had an OK time and then took a nap when he got home. We woke him up for dinner and found he had had an accident. He has been having very urgent bathroom needs and it seems the tumor may be causing problems. Hopefully it will retract very soon.

He wasn't up to coming down to dinner (he had a fever and has had one most of the day). We brought him down to blow out his candles and have one bite of cake and then he went to bed for the night. He has been up once with pain already and we can hear his periodic moans of pain through the baby monitor. So - he is definitely having more pain and not resting well.

I have to admit that today I was more sad than anything else today. Seven years ago I was holding my first child for the first time and now I am spending his last birthday with him and he is in pain and so fragile. It just is not right. I keep trying to remind myself that he was 2 when he was diagnosed. Every since that moment I have never expected/assumed he would see his next birthday yet he turned three, four, five and six battling cancer. I might never have been able to see him go to school and see what kind of child he is. I wish more than anything I could see the man he would become because I know he would be a wonderful man. But - we have had seven years and I am certainly grateful for them, however it could never be enough time.

Friday, June 15, 2007 8:35 PM CDT

We met with the radiation oncologist today and discussed the MRI. The most troubling thing on the MRI is that there is a tumor pushing out of the bone into the spinal column in the T5 vertebra. This is most likely causing the left leg problems and also some pain. It could also cause paralysis and incontinence. We decided to radiate that spot but we did not radiate anything else. He has some issues with his right hip, but since we are so worried about his counts and the hip pain seems under control right now we will just wait to see if it is necessary.

Nathan did great with the radiation. He had no problem lying still without pain for it. They did a one-time dose so he does not need to go back. His back was itchy at the site afterwards but he is not complaining of it now.

He went outside a little. He walked holding onto me for help. The walking itself is not causing much pain, but that left leg is dragging. We are hopeful the radiation will allow him to walk on his own again. He really wants that.

We talked to him a little beforehand about the tradeoff of radiation and counts. Luckily it was not an issue fo the spinal radiation but we had thought it could be for the hip if we had done it. He started crying when we asked him if more transfusions would be OK if it helped him to walk. He said he was tired of all the doctor stuff but also that he wanted to walk. We assured him we would just make the decisions and he didn't need to worry about it. I had wanted to give him a chance to express his desires but he was clearly overwhelmed. Now we know.

So - tomorrow is the big birthday! We have nothing much planned. He will help Grandma make some homemade noodles and he will have cake and some presents. If he is up to it we may do something else fun out of the house.

As I write this - he is in bed and very tired. I am hoping he will sleep well and feel fairly well for his birthday tomorrow.

Thursday, June 14, 2007 9:43 PM CDT

Wednesday found Nathan still not feeling the best. He did play a little and had to have a little pain medication as well. He perked up to go to the toy store. Thanks to those of you who have sent him some birthday money! He took his money and bought several Playmobile Toys. He spent the rest of the afternoon playing with them and it was a great diversion.

As far as the medical front yesterday, we waited to see if the MRI would be read and when I called mid-day it had not been read and so we set up an appointment for today. I took his blood over the clinic around lunchtime and his platelets were 8,000 and hemoglobin 7.8 and so he was in need of transfusions for both. It was too late in the day to do them yesterday and so we scheduled them for the hospital today. So - we rescheduled radiation for tomorrow.

Nathan really perked up after the red blood. He came home and had dinner and then wanted to ride his Gator. He rode it for quite a while and then got off and crawled to the grass and played with his Grandpa. The new picture on the front is from tonight. I will put a couple others on the photo page.

Nathan had a nasty reaction to the benedryl today. He got confused and emotional and cried for about 45 minutes. This has happened over the years and every time we think maybe he won't have the reaction any more we try again. At the clinic they give him adarax but for some reason the peds floor at the hospital always has trouble with the adarax. They don't normally give it and so there are always delays and phone calls and checking and more delays before he finally gets it. I guess we'll just take the delays next time.

So - he is due to get the radiation tomorrow but I am extremely nervous about its affect on his bone marrow. I will be asking a lot of questions and if the answers are not satisfactory we may have to wait until we can meet with some other doctors. Right now his pain is fairly well controlled. I am not sure if it is worth the trade-off for him to have less pain but spend every other day getting transfusions. so - we'll see....

Tuesday, June 12, 2007 11:04 PM CDT

Nathan had a less active day. He threw up three times - twice after receiving oral morphine for some pain. He was mostly on the couch all day. He did have his MRI and that went really smoothly. He seemed comfortable and he had a Spongebob book on CD to listen to.

If the radiation oncologist's office can read the MRI in the morning they are going to try to have us bring Nathan in sometime tomorrow. I am also planning to draw his blood and drop it off at the clinic to check his counts.

That's about it for the day.

Monday, June 11, 2007 10:39 PM CDT

Just in case you missed it - I updated this morning for Sunday and Saturday.

Thanks for you prayers about the MRI. I called this morning and they explained why they were really unable to schedule him any sooner than June 21 since they are replacing the MRI at the hospital. He then checked for cancellations at the machine near our house and found one for tomorrow afternoon. So - he is set to have that done tomorrow.

Nathan still seems to be pretty stable. He napped today for the first time in several days. He also walked with help to and from the bathroom and crawled here and there as well. He really wants to be more independent. He also played with Julia for a while this afternoon and he had been too cranky for that for the past week or so.

I don't think we had to give him any morphine today. We changed his pain patch over today but I don't think it affected him. He still is having times just being the Nathan we know and love and after a week of having not seen that it is still so nice to see him happy and silly from time to time.

I convinced him to have a bath tonight and I think it went well so I am hoping he will be more willing now that he knows he can do it without pain.

All in all it was a pretty good day for him. I am hoping he can lie down for the MRI tomorrow without too much pain. It is going to be challenging for him but I think it will work out. He is dreading the loudness but I told him that he will hopefully get some music on headphones. I need to call and check on that.

I will update tomorrow or Wednesday morning.

Sunday, June 10, 2007 4:49 PM CDT

Sorry for the lack of updates yesterday. Things are pretty calm around here. Nathan's pain continues to be controlled pretty well with the patch and he has some oral morphine a couple of times during the day - but no severe pain.

He had a really good day yesterday. He was in good spirits and laughed and was silly here and there. Julia had a birthday party and so while she was gone he want with Luke and Grandpa Mike to the coffee shop, ice cream and toy store. He didn't have any naps and played a good deal. He is now willing to crawl around if he needs to but we still carry him to the bathroom and from room to room.

Today we tried to convince him to go to church but he didn't want to. He has a hang up about using his wheelchair there. Luke Julia, Lauren and I went and it was nice to be there. Nathan had a good time with his grandparents all to himself while we were gone.

We are having a leisurely afternoon and are making a cake for Grandma Kathy whose birthday is today. Nathan is watching some NASCAR and hurts a little but is pretty content.

Tomorrow I will start knocking some heads to get the MRI scheduled and if I can do it early enough in the morning I will try to take the girls out to swim. I will take Nathan's blood in to the clinic sometime this week to check his counts. He seems OK right now with them so it is no hurry. We haven't taken Nathan's temperature but it seems as though he hasn't had one. Perhaps the antibiotics helped.

I will update again tomorrow.

Friday, June 8, 2007 7:52 PM CDT

Nathan had very good pain control today. He has also been awake the whole day. Not one nap (thought I think he could have used one). He played quite a bit and even rode the Gator for about 2 minutes. I could tell it hurt him. He is VERY cranky and touchy. If you even look at his sideways he gets mad.

So - as far as the radiation. We went there and spoke with the doctor. Since Nathan's bone marrow is so fragile he wants to do an MRI so that he can more careful pinpoint the radiation to avoid as much bone marrow as possible. So - he said he would try to get an MRI ASAP. Perhaps this weekend (not going to happen since they called and said June 21 and we said no and they are "working on it"). After the appointment Nathan wanted to go eat at a restaurant and he picked Red Robin. So we went and did that and then went to the Toys R Us next door.

There was more playing and crankiness and some eating the rest of the day. Oh, and the narcotics are giving him problems with his bowels, which was very distressing for him. He went up to his bed at dinner time and watched a movie and ate dinner up there.

So - we are really pleased that he was awake and able to play some today. However, he is so cranky and also clearly depressed. It is hard to see him so down. We can't blame him. He is still not walking. He is afraid to try so we don't know exactly why (pain or nerve/numbness?).

It is disappointing he couldn't have the radiation today and the earliest he could even have it at this point would be Tuesday and that would be if he gets a Monday MRI which is probably also a long-shot.

Thursday, June 7, 2007 11:17 PM CDT

As I mentioned previously Nathan was more awake today. He woke up around 6:30 and could hear him talking with Julia. He laid in bed and played a little and then got out of bed to play and then came downstairs (as in we carried him - he is not walking these days). He hung out on the couch and I brought his new toys to the basement and he went down there and played a little and laid on that couch. He came back upstairs and went back to bed around 10:00. I think he got a little pain medicine somewhere in there but his pain was not so bad.

I drew his blood and ran it into the clinic and his platelets were only 7,000 and so we planned for me to bring him in to get some in the late afternoon.

Luke took Julia out to lunch while Lauren and Nathan napped and Nathan woke up at 2:00 asking for lunch. He didn't eat any but was at least awake. I took him into the clinic and he got the platelets. He had a fever of 102.2 when we got there and so they also gave him some antibiotics. He broke out in a horrible case of hives and so we hung around waiting for them to go away and continuing to medicate. When we were finally leaving he perked up and was chatty and almost happy and he said he wanted to walk to the wheelchair but he could not use his left foot. I tried to get him to move it and he couldn't. The doctor came in and we finally got him to wiggle his toes. It is either the cancer or all the meds he got. We will check to see what the foot is doing tomorrow. He was very upset about it and said he really wants to be able to walk again. I told him I hoped th e radiation he may get tomorrow will help with that. I told him it will probably get bad again though. He asked me whey and I told him it was the cancer. He told me he wished he didn't have cancer and I agreed.

He was happy to hear he would be seeing his grandparents but was upset that they were coming here and not us going there. I told him it was not cancelled at this point and we would just have to see how he feels. After a few minutes and a change of topic he told me he needed to tell me something - that he wants to go to Illinois even if he is in pain and he wants to have his birthday there. I told him it was not that simple and that he didn't have doctors there and we just have to wait and see. I just don't see it happening. I feel so bad for him.

NAthan is definitely getting depressed about his situation. He wants to feel better. It is really hard.

Tomorrow we will attempt the radiation. It is going to be brutal for him but if he can just get through it I think it will be well worth it. Luke and I will both be going with him. His parents arrived this evening and will hold down the fort.

I feel better today after speaking with the doctor face to face. I still don't feel like I have a good resource for when I am at home and have a concern, but Nathan tolerated going to the clinic OK and so I might just have to bring him in if there are more concerns.

I will update tomorrow afternoon. Thanks everyone, for your thoughts and prayers.

Wednesday, June 6, 2007 9:31 PM CDT

Update - Thursday morning

During the night we could tell Nathan was more lucid and this morning he is awake and laying down playing with his new toys in his room. He has not complained of any pain yet either so perhaps he has gotten used to the patch. Even if it is short-lived - it is a great relief to see him acting more like himself.

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The good news is that Nathan only complained of strong pain once today. The bad news is that he slept basically the whole day. We got him up around 10:00 with a bribe of some of his birthday presents. He laid down and played with them for a few minutes and then we convinced him to have a couple bites of food and then back to bed. We woke him up again at dinner time and he had a few bites of food and then went back to sleep again. It is so hard to not see "Nathan" at all. It is better than seeing him in pain though.

He will most likely be receiving radiation on Friday to hopefully lessen his pain. It would be just one dose. We are unsure if he could actually make it thought it without sedation due to the pain of lying still on his back. We'll see.

Tomorrow I will draw his blood and run it to the clinic to check his platelets. If he needs them he will get them tomorrow or Friday. I can't really envision him leaving the house in his current state but I guess it will happen if it needs to.

He looks pretty awful. His color is really off and he just doesn't look very peaceful. The pain patch is causing him to itch pretty badly. I think his sleep is not very restful because of it.

I am a little frustrated with the support system (lack thereof) in place. I have called the doctor (not is usual one who is out of town) a couple times with some questions and I do not feel like we are communicating successfully. I feel like if it is the middle of the night and Nathan seems to have some concerning problem that I have no one to call to ask about it. I really feel like we are on our own and I know nothing about what I am doing.

If Nathan were on hospice, I would have them as a resource, but he cannot receive radiation or (more than the very occasional) transfusions if he is on hospice. He will be on it at some point but just not yet.

We continue to hope Nathan will wake up a little when his body gets used to the pain patch. It is most likely too strong but since he is a child and there are so very few medications made for children, a lower dose patch is not available.

Luke's parents are going to come out for a little bit to help us. It would take a miracle for us to be able to use our plane tickets next week to go see them.

I can't begin to say how hard these past few days have been. Please pray that we get some more days with Nathan alert and able to play a little.

Tuesday, June 5, 2007 9:31 PM CDT

Update - Wednesday morning

Nathan was up a few times in the night to use the bathroom and to throw up. He continues to have a fever. He did not ask for any pain medicine in the night and has been awake once this morning to ask for pain medicine. He went back to sleep and remains asleep. I am hopeful that the patch is helping him be more comfortable and helping him to sleep also. I will update again later.

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Nathan had tons and tons of pain today. We have not been able to manage it sufficiently. He is on a fentanyl patch now but it does not seem to be helping. We continue to give him doses of oral morphine that only help a little bit. He has a 102.2 fever and his upper abdomen is suddenly tender to the touch and it also looks distended.

His bone scan showed several places where the bone is deteriorating - hips, ribs spine. We have no idea if he has an abdominal tumor but he very well may given his latest symptoms.

I am very concerned about him and it is horrible because even the doctors don't really know what we should do. If he "gets worse" I am to call the doctor back. I am not sure what that is since it is pretty bad already.

Please send all your prayers our way.

Monday, June 4, 2007 9:04 PM CDT

Nathan slept from 6:00pm to 6:00am this morning but woke up in pain (we wake give him narcotics at 11:00 pm). He felt tired,as usual in the morning. He told me that that is just how he is now. It didn't take him too long to decide he wanted to ride his Gator so he did that for about 45 minutes and then he started to hurt. We went off to the bone scan injection at 11:00. He had some pain in the car on the way there and I gave him some dilauded. By the time he was having his injection he was in severe pain and I had to go to the car to get the fast-acting oral morphine. One dose did nothing and I had to give him another. When we got back into the car he said his pain was at zero. Five minutes later it was at 3 and by the time we got to the clinic it was ramping up. We were only there for me to pick up a prescription and were supposed to go home. He was in so much pain that I brought him up with me and they proceeded to give him three doses of IV morphine. He never really went to sleep and we stayed for 2 hours and went to the bone scan and about half way through he started crying in pain again and I gave him more oral morphine but he was in agony. Luckily the bone scan was very quick and we got out of there and his pain subsided some. He went to bed after we got home and got up for dinner and actually ate a decent amount. After dinner he went right back to bed.

So - all in all - a very poor day for him. The only bright spot was him riding the Gator. I doubt he would have done anything fun at all today if he didn't have that.

Sunday, June 3, 2007 9:00 PM CDT

As I mentioned previously, yesterday was a good day for Nathan. Today was not so good but I will start with yesterday.

Nathan slept all night Friday night without a peep. I woke up around 5:00 and then I was wide awake worrying about him so I checked in on him and he was fast asleep. He got up in the morning and was pretty chipper. He went to the basement and played and played with Julia and even did some running and hopping through the house.

Around lunch time he had a great surprise as our friend, Ouida, delivered an early birthday present to Nathan. He got a ride-on John Deer Gator. He LOVES it. He had some huge smiles on his face and he drove it around the cul-de-sac and he has ridden it several times since then and adores it. It is wonderful for him to have something he can do like that even when he can't walk so well.

He continued to have a very good day with minimal pain. He was worn out from all the playing and went to bed early. He had decided twice that he wanted to nap on the couch only to get up a few minutes later when something more fun occurred to him

He slept all night last night but was very tired this morning. We were planning to go to church as usual. I left early to get to choir rehearsal and then Luke called me to tell me Nathan was in major pain. He got some more pain medicine (he is on some narcotics around the clock anyway) and went back to bed for a few hours. He woke up and ate and rode his Gator. He played a some video games and then went back to bed for a while. After that he was up for a while but got in pain again and had some more extra meds and went to bed until dinner and then he ate and went straight back to bed for the night.

So - today was not such a good day but as far as pain goes was more manageable than it had been Thursday and Friday.

Tomorrow he has his bone scan and I hope that it can shed some light on the areas of bony disease. I continue to be concerned that he is also having some problems with his bowels and I may request an abdominal x-ray just to check.

So - we are day to day at this point, I guess.

I will update again tomorrow.

Please see the photo section for a couple of pictures and I will hopefully get our May pictures up on our family web site soon.

Friday, June 1, 2007 10:17 PM CDT

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Saturday - just a quick update to say that Nathan woke up a new kid today. He has had very little pain and has been playing all day. I will update in more detail soon.

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Well - Nathan managed to do all his fun stuff and medical stuff today.

He was up several times in the night needing pain relief.
The day started out ok. We have a baby monitor in his room and the first words I heard out of him was him telling Julia that his party was today. He did OK for a while - mostly laying on the couch but was in major pain by about 9:30. We gave him some drugs and then he finally asked to go to bed. He managed to sleep for a while and I took the girls over to Chuck E Cheese's to get ready for the party. Luke woke him and brought him over when it was time. He sat in his wheelchair and mostly watched his friends run around. He perked up after a while and did get up a couple times to join in on some things. He had no trouble gathering the strength to open his presents! He had a lot of his classmates there and his teacher - which was a big hit, not only for Nathan but for the other kids.

I took him straight to the clinic afterwards and after phoning Luke realized we had failed to give him his pain medicine. He was doing fine at that point - I think he was running on adrenaline. He started to hurt about 20 minutes after we got to the clinic but I had told them of our error and they were already getting the morphine ready. He had a half dose and then had some more pain during his platelets and got some more. After the platelets he was still hurting and so he got a full dose and finally got into a restful sleep. We just stayed at the clinic and I let him sleep until it was time to go to the zoo. He received a comic book at a station right after we arrived and spent most of the time reading it in his jogging stroller - but he did get out for a few activities - including riding the carousel.

He went right to bed when we got home and seems to have fallen asleep without too much pain. We were able to get some oral morphine for under his tongue which will be very fast acting to deal with break-through pain. Hopefully we can keep him comfortable tonight.

I will update again tomorrow. I am not sure if we got any decent pictures - we didn't take very many, but our friend Ouida took a bunch so we will get some from her and eventually I will put some on here.

Thursday, May 31, 2007 7:36 PM CDT

Well - I guessed I jinxed myself when I said I hoped not to update until Friday.

Nathan's day started out fine. He had a haircut and went to buy some new flip-flops.

Around noon his hip started to hurt so I gave some pain medicine. It did nothing for him and he was writhing and groaning in pain. I called the clinic and they tried to find some liquid dilauded (turns out there is NONE available in town) and said I should come in to get the prescription (can't call-in narcotics). I went down there with Lauren and as I was arriving they called and said that I could bring Nathan and get him some morphine if I wanted - but I was already there. So - I got a different prescription that is a little stronger than what we had. I took it in and got it filled and got home around 3:00. Nathan had slept a little but was still in major pain...for three hours. I gave him the new medicine and then half more and he still was in pain around 4:15 and so I called back and took him to the clinic and they gave him some morphine. So - he finally got some pain relief. I brought him home and he tried to eat and promptly threw up. He had so many narcotics today - I guess it isn't surprising.

So - he is on the couch watching Julia play Lego Star Wars. We are going to try to keep him on percocet around the clock and see how he does. The doctor prescribed the pill form of dilauded when I was there the second time today. The dose is bigger than they wanted - but after seeing him in so much pain I think they decided it was OK. We will hopefully use the dilauded only for break-through pain. If things go OK he may start a pain patch next week.

So - meanwhile -our #1 goal is pain releif, but a close #2 is getting Nathan to his part tomorrow. So - please send your thoughts and prayers his way that he can have his party and enjoy it.

After the party I am taking him in for some platelets. They had gone down 16.000 from yesterday so we will fill his tank for the weekend. Tomorrow night there is a very special night at the zoo for sick kids. We went 2 years ago and the kids LOVED it. They both really want to go. So - I think we will try - it seems crazy but Nathan will just be reclining in the jogging stroller so maybe it will work out.

I'll let you know what happens...

Wednesday, May 30, 2007 8:56 PM CDT

Nathan had been feeling pretty good until last night. He is now in pain again and very tired. He felt better for a while after he had his pain medicine and so we are going to try to keep him on it.

He went to the clinic and his platelets were at 24,000. We don't really know if they are stable or going down. We will just keep an eye on him to decide if he needs them.

I am still hoping that we can get him feeling good for the two hour window of his party on Friday. I think we will be able to.

We now have plane tickets to go to Illinois fairly soon. We may not get to use them, but we figured if we didn't go ahead get them there would be zero chance of making it so we went for it. It is only money.

Our beloved babysitter, Tammy is moving on Monday. I can't tell you how sad we are to see her and her family leave, not just for her care for our kids, but for her friendship and for the close freindship between her daughter and Julia. Today, we had our neighbor, Megan, (a high-schooler) come over and babysit (thanks Megan!) and it went really well. I have been very stressed about the whole child care situation and so I am feeling a lot better.

I had Lauren in to the doctor for her 18 month check up today. She is still a peanut! She is 19.4 pounds. So - she is still in a rear-facing car seat. Her height is slightly above 50th percentile whereas her weight is the first percentile. So - she is tall and skinny - very much like her big sister. She is doing great though - right on track.

Julia has been very emotional lately. I am sure she is upset about Nathan's health but probably confused about it too. Then there is her best friend moving away and transitioning out of preschool. The poor thing also had a urinary tract infection this weekend. I keep saying I am going to seek out some counseling for her and I hope to act on that soon.

As for Luke and I - well - I think we are both having trouble concentrating. That is more of a problem for him than for me given his job. I have been doing all kinds of mindless stupid things. I guess the stress has to manifest itself somehow and I am trying to continue to live life as normal.

So - Nathan's next scheduled medical stuff is the bone scan on Monday. I will update Friday and hopefully not before because that will mean all is well.

Tuesday, May 29, 2007 3:11 PM CDT

Sorry for the lack of posting. We had good weekend full of normal stuff.

Nathan felt good most of the weekend and was able to ride his bike, attend a party, play at a playground and play alot with Julia. He hasn't had any more fevers and has only taken to the couch at the end of the day after exerting himself.

He will go to the clinic for counts tomorrow. His bone scan is schedule for next Monday.

Nathan's party is on Friday. He was hoping for a big turnout but I haven't heard from most of the invites so I hope he isn't too disappointed.

We are still hoping we can go to Illinois sometime in the next two weeks. Since we are flying we will just have to make a call and buy tickets and then be OK will just not going as scheduled.

I will try to have a more detailed update after Nathan' appointment tomorrow.

Friday, May 25, 2007 3:49 PM CDT

Nathan and Julia are running around outside in the backyard as I type this. We got home around 1:00 this afternoon.

Last night wasn't terribly restful but productive. Nathan had his counts checked and a chest xray. He needed both platelets and red blood cells as well as some IV antibiotics and so that took up the whole night. Actually, Nathan slept through most of it. He was surprised to wake up with a blood band on his wrist this morning.

His chest xray showed that he probably had a cold or other virus. His fever came down after he was admitted and didn't come back and his cultures are negative so far.

He woke up feeling great and with a "full-tank" he has more energy. It has been several months since his hemoglobin has been this high.

He got a head xray and one more dose of antibiotics before we left this morning. The head xray was normal, which means there aren't any fractures or abnormalities showing that could be caused by tumors. So - I guess the various head pains are just headaches.

He will start an oral antibiotic tomorrow and he will go back to the clinic on Wednesday to check his counts.

All in all - it worked out pretty well to go in-patient last night. I'd rather sleep some through the blood transfusion than watch it drip for four hours.

So - we are set for a relaxing Memorial Day weekend.

Thursday, May 24, 2007 9:25 PM CDT

Update - Thursday evening.

Nathan had a good day at school. He stayed the whole day and was able to participate in everything. He even went outside and was running and jumping. I took Julia to a party and took hi temperature when I got home and it was 103.4. So - we are now in the hospital, hopefully just for the night, for him to get some antibiotics and blood cultures taken.

I'll update tomorrow.

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Thursday, May 24, 2007 10:25 AM CDT

Yesterday was a fairly good day for Nathan. He decided to go to school after he woke up a little more and so I took him in around 8:45. He stayed and had a good time until about 12:15. Although he said he was tired he did not take a nap. He watched some movies and played with a microphone kind of toy until dinner. He had a fever of 101.5 and his ear is really hurting. His doctor has looked in it twice and not seen too much - just a little pinkness but I have to wonder if it is now infected. He has also been having some pain in his head. I felt around but couldn't feel any bumps or swelling. It wouldn't be unexpected for him to have a tumor begin to grow from his skull. But, of course, we are hoping that won't happen.

Nathan had a bath and went to bed immediately after dinner last night. He woke up early this morning crying about a tooth hurting. I suspect it was more like jaw pain because when I fiddled with the tooth he didn't jump in pain. I gave him some ibuprofen and he calmed down.

He had it in his head that he wanted to be at school all day today to not miss any of the fun last day of school activities - so he is at school right now. I am not sure he will make it all day, but he will lie down for a while if he wants at school - so maybe he will. I changed his appointment to tomorrow morning so he wouldn't have to miss any school today. I am very curious about his ear. I haven't heard anything more about the bone scan. I think I will call when I am done with this to see if it has been scheduled.

I will update again tomorrow after his appointment.

Tuesday, May 22, 2007 10:31 PM CDT

Well - it seems Nathan has a good day followed by a bad day and continuing on like that. Since yesterday was bad, today was good. Nathan woke up pretty chipper and could probably even have gone to school in the morning but we wanted him to save his energy to be able to go later. I don't think he had a fever all day which made a big difference.

He ate lunch (an apple - his appetite has been bad) around 11:00 and started asking to go to school. He had to wait until school lunch was over and then I dropped him off. At 2:30 the rest of us went to school for the awards ceremony. Nathan got a ribbon for getting 10 points in the AR program (reading) and got the Sunshine award for his class. Afterwards he was presented with a declaration making him an honorary member of the Colorado Springs police department. One of his classmate's fathers is a police officer and that is how it was arranged. He really thought that was cool and got to check out the police car and go for a ride afterwards. When we got home he got out some construction paper and wrote down Police Car #8152 and then glued it to another piece of paper and is going to put it with the declaration so he can remember the number. It was very cute.

Nathan had two helpings at dinner and it was great to see him eat like normal. I am told he was very active after dinner and then crashed at bedtime (I was at choir rehearsal).

So - all in all - a very good day for him. I am trying to prepare for maybe not so good a day tomorrow. Hopefully I am wrong!

Monday, May 21, 2007 8:47 PM CDT

Today has not been a very good day for Nathan. He woke up very tired and laid on the couch all morning. I took him to the clinic around lunch time and they checked his counts. He didn't need any transfusions but his platelets weren't all that high either. His white count did come down to his more normal range.

After we returned from the clinic, Nathan lay down on the couch and fell asleep for a while. He had some lunch when he woke up and I coaxed him off the couch with a game of Monopoly Junior and to build a marble maze thing. He went back to the couch after that and when it came time for dinner he did not eat and wanted to go to bed so I gave him a quick bath (he had not had one in a week since he had his port accessed) and then he went to bed. That was around 5:45. I just put Julia to bed and checked on him and he has a low fever.

Tomorrow I am just hoping to get him to school for the first grade awards ceremony.

His doctor wants to go ahead with a bone scan next week. He said that it should be able to show if there are tumors/lesions growing out of the bone that we should consider radiating. I think it is making him nervous treating Nathan without knowing what is going on inside him. Hopefully the bone scan finding won't lead to a cat scan - but I am kind of guessing that might happen.

Nathan has not been having too much pain. He definitely has some but it seems pretty manageable. The fatigue is what is getting to him instead. I am not sure what that is all about. I haven't had a chance to talk to his doctor much about what may be going on in Nathan's body. Unfortunately, I have read many, many accounts of children at their end of their battles with Neuroblastoma and so I know all the awful things that could happen.

It is very disappointing that yesterday's time of feeling good ended so quickly. Please pray that there will yet be more such good times, most especially for his birthday party.

Sunday, May 20, 2007 7:35 PM CDT

I am happy to be able to say that Nathan is feeling better today. Yesterday he felt rotten all morning, had a fever, and even went back to bed and slept for a while.

Today he went to church and then went to a bowling birthday party afterwards. To my amazement he bowled a full game and even did some running and jumping around. He is still going pretty strong this evening.

We are hoping that this means the chemo is helping and also we are hoping that perhaps he had a little bug of some sort and he is getting over it. His white count was a little high for him, so that is a possibility.

We are just going to play it by ear right now with our trip. Next weekend is just not going to work so we will try again in a few weeks.

I just planned Nathan's birthday party for June 1 at Chuck E Cheese. He wants to invite all his school friends. His birthday is June 16 but for many reasons we wanted to do his party a little early.

He goes into the clinic for counts tomorrow, late morning. The doctor seemed to think he might need platelets. I haven't seen any signs, so hopefully he will not need any and could maybe even go back to school for the afternoon.

I can't tell you what a relief if is to see Nathan feeling more like Nathan again. Even if it is temporary - it is wonderful.

Friday, May 18, 2007 7:37 PM CDT

Long day....

Nathan wasn't up for school this morning. I took him and Lauren to Tammy's and then I took Julia to the zoo to meet up with her preschool. Afterwards I dropped her off and picked Nathan up and took him to the clinic. His platelets were 23,000 but he has been showing some signs of the low platelets and so we decided to give him some. He got some hives in the middle of the infusion and so we had to stop for a while and then continue slowly but we found some more hives and so he didn't get all of his platelets.

This morning I called and arranged for Nathan to get a wheelchair (I picked it up this afternoon). He is just so tired and limping. He can walk but if we need to walk around much it is too much for him. So the wheelchair will be used when there is a little too much walking for him. We have a jogging stroller he can use but it is not practical for crowded indoor areas and doesn't steer well. I first mentioned the possibility to him a few days ago and he didn't like the idea but he seemed fine with it today. he just wanted to know what color it would be. It is black.

We have been wanting to take a trip to Illinois and were hoping to do so in about 3 weeks. I talked to his doctor about it today and he seems to think we should not drive and should probably make it a long weekend type of thing. I asked him if he thought Nathan would be doing worse 3 weeks from now and he said he thought that Nathan's pain could start to be an issue in a month or so. Right now, his platelets are a possible problem. So - we are trying to decide what to do about that. We may end up going sooner than planned.

Nathan's hemoglobin continues to go down and his doctor thinks it might help him feel better if it were higher so he might have a blood transfusion sometime next week.

Nathan's blood work showed the cancer continues to get worse, but that is no surprise. His doctor wanted to know if we wanted scans to know the extent of his disease and track the progression but we only want to do scans if they will be helpful to Nathan so if he starts having localized pain we may do a bone scan to pinpoint the areas for possible radiation. Radiation is very effective for pain control with progressive neuroblastoma. I can already see what the MIBG scan would look like in my mind - I don't need to put Nathan through it.

So - that is all the depressing news from here.

Thursday, May 17, 2007 9:54 AM CDT

Nathan continues to be very tired. His leg pains seem to have lessened a little. He didn't go to school at all yesterday, though I think he could have gone for a little while if we would have just waited and took him in a little late.

He is at school this morning because he gets to bring in treats for his birthday since he has a summer birthday. I expect he will come home later this morning - maybe after lunch. He loves school lunch so I am hoping it is incentive for him to stay.

He continues to be utterly exhausted by the end of the day. He started chemo yesterday and we are hoping the chemo will help him to feel a little better. I am a liytle suspicious of his platelet count. He scratched his leg this morning and it bled more than one would expect. He will go in tomorrow to get his counts checked.

It is hard to see Nathan feel so tired and to think that maybe he will never feel as good again.

Sunday, May 13, 2007 9:03 PM CDT

Monday evening update

Nathan did not go to school. He continued to limp and feel tired. I took him to the clinic and his leg pain is a bit of a mystery since it is manifesting itself as muscle pain. His white count was a little bit high, for him and his platelets are still quite low at 28,000.

The tylenol is not cutting it. We don't give him ibuprofen due to his low platelets and one kidney. We are reluctant to give him sedating pain medication because he is not in pain when he is not standing or walking and we don't want to make him go to sleep. So - the doctors decided he could have ibuprofen once per day. It can make his platelets stop doing their job and cause bleeding, but at once a day, it should be safe. They gave him a dose at the clinic to see if it would work and it helped alot. He is moving a lot faster and going up and down the stairs now.

So - the plan is to give him the ibuprofen before school so he can hopefully spend at least a half day there.

He will start chemo at home on Wednesday and have his counts checked on Friday.

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I thought I would update on Nathan. His fever did go away but has been back. He continues to go ahead and play and have fun but he is more tired than usual and hurting more. It seems pretty certain to Luke and I that the cancer is rearing its ugly head.

We had a good weekend. On Saturday I ran errands and everyone everyone else hung out at home. Then we all went to an Air Force Falcon's baseball game. The weather was perfect and we had a good time. Before the game, 4 men parachuted onto the field. That was very cool. We didn't stay very long because Nathan started to get tired.

Saturday night Luke and I went out to dinner and to a club for some live music. We didn't stay the whole time because *I* got tired (and the music was too loud). Yes - I guess I am getting old.

We had a very nice day today. The weather was once again, ideal, and thinking that nice days, time and Nathan's feeling well enough may not happen again soon, I decided I wanted us to go to a little amusement park. The kids had a blast riding all the rides. We brought our old double stroller and Nathan can perch on the front seat so he did not have to walk around much. I saw some really wonderful smiles as they rode the rides.

We rested after we got home and after dinner, one of Nathan's friends from school rang the bell and asked for him to come out an play. This was a first for him and so he went out and played very hard and had a lot of fun.

I came in a moment after him and he was crashed on the couch, utterly exhausted. He had a low fever and so I carried him upstairs and washed him and put him to bed. He really was in no position to be playing so vigorously outside but his desire to play with his friend was greater than his body's failing.

He is due to go back to the clinic on Wednesday, but I may take him in tomorrow and just have him looked over. We will see how he is doing in the morning. I also suspect he will be too tired to stay at school all day so if he comes home early I might take him in then.

Happy Mother's Day to all the wonderful moms out there, especially to my favorite moms - my mom and my mother-in-law. I also want to send a virtual hug to all my fellow cancer moms.

I will try to do a quick update tomorrow.

Friday, May 11, 2007 10:03 PM CDT

Nathan came home from school early today and promptly went to bed and took a nap. He has a low fever and is limping and tired.

I am really hoping it is a virus and not the cancer. Unfortunately low grade fevers are a symptom of the cancer.

He and Luke are supposed to go to an Air Force baseball game tomorrow and see some people parachute onto the field. I am hoping he feels better in the morning.

I did get to attend the Mother's Day tea in his classroom this morning. The kids were so cute. I was happy to be there with Nathan but it was very difficult for me. It very well may be the last time I get to attend a school function like that with him and that fact, coupled with seeing all those first graders with their moms, who can just enjoy the day and expect many more, was very hard for me.

Wednesday, May 9, 2007 7:43 AM CDT

Nathan's day at the clinic on Monday went smoothly. His platelets were somewhere in the 30,000s but I don't think they are rapidly dropping. I didn't ask for and was not shown his labs from the last time which have markers for what the cancer is doing. I find there is no value in knowing since it won't change anything and will only ruin my day. I would rather look to Nathan for how he is doing and if he is having a good day then so will I.

He is scheduled to go back to the clinic next Wednesday to start another round of chemo. He may end up needing to start the chemo a few days late if his platelets are still really lagging.

Otherwise, things are pretty normal around here. School ends 2 weeks from tomorrow (1 week for Julia's preschool). The kids have various end of school year things going on. Lauren is really becoming more of a toddler and she LOVES to play with her brother and sister. She is talking up a storm now and we are getting a big kick out of it. She is in the phase where every object she sees she has to tell us whose it is. Luke was folding clothes and he couldn't believe she knew which clothing belonged to which member of the household.

Luke and I are going out Saturday night to see a band in a club. Boy do I feel old - we'll see if I can stay on my feet an up that late! Not to mention getting up for church a few hours later.....

That reminds me - a big THANK YOU to whomever sent us the couples retreat gift certificate for the spa. We are really looking forward to having that relaxing time together sometime!

Saturday, May 5, 2007 8:55 AM CDT

We have had a good week. It was very nice having a break from the clinic and Nathan hasn't had any nose bleeds or other indications that he needs platelets. He had a very long day yesterday with school and a field trip followed by a choir concert at church in the evening. He held up really well. His new picture is from yesterday morning before school. He wanted to dress appropriately for his field trip, which was a farm day.

He has seemed to feel pretty good this week. I don't think we have had to give him any tylenol.

He just asked us what fun thing we are going to do today...I am not sure but I guess we need to figure something out!

Check back later for April family pictures.

Monday, April 30, 2007 7:55 AM CDT

Nathan has finished up another round of chemo. He did fine with it as usual. On Thursday Julia and Lauren were both sick (with different things) and yesterday Julia had what Lauren had. So far, Nathan has not gotten either sickness and I really hope that holds true.

Our weather has turned around from the snow days last week to high 70s and sunny. We had a nice weekend outside. Nathan's school has individual testing today and tomorrow and so he is off school. They have not yet announced the last day of school but it should be right before Memorial Day and so there are only a couple of weeks left.

So - how is Nathan really doing? For the most part he is functioning normally. His legs seem to tire out more and more easily. He is struggling more getting up off the floor. He doesn't seem to be in much pain - but we know he gets used to a certain amount of pain so it is hard to tell. Despite this - when exciting or motivated he takes off into a run. It is slower than most kids but still a run. So - we are happy with how he is doing and hope it continues for a very long time.

Wednesday, April 25, 2007 10:52 PM CDT

We had a great weekend with our friends. It went way too fast!

Monday was a teacher inservice day and so I took the kids to a family fun center to play and also to bowl. They had never bowled before but had been bowling on the wii over the weekend so I thought they needed to try the real thing. It was fun! Julia didn't care for it so much because it was so hard but Nathan liked it.

Tuesday it snowed and schools were closed so we stayed home and baked and played. Today - they canceled school again(for no good reason) but it worked out fine for me because Nathan had to go the the clinic anyway and that way Julia could play with her friend Brady(also had a snow day) at Tammy's while we were gone.

Nathan's platelets were the same as last week (48,000). His other counts were up a little. We were a little surprised they had not dropped. We decided we might as well get the chemo started today instead of Monday and so that is what we did. He will continue it at home the remaining 4 days.

He was really wiped out this afternoon. His limp has been more pronounced lately too. We hope the chemo will help with that.

Since his counts seemed pretty stable, his doctor decided he didn't need to return until the 7th when he is due for his monthly infusions that take all day. So - we get to skip the clinic for next week. Yay! I should be knocking on wood or something that nothing comes up.

I need to cut this off and get to bed!

Friday, April 20, 2007 11:08 AM CDT

Well - Nathan's platelets have gone down again. Just on schedule for it to be the chemo. I think the doctor finally agrees. However, now that we know that the 10 day break he got from chemo last time was enough to allow his platelets to come back up, we are not so worried about giving more chemo when they are low.

Nathan would be due to start chemo next Wednesday. We are probably going to wait until the following Monday to start.

As far as stem cells. If Nathan had more of his own stem cells he could undergo more treatments and then his stem cells be given back to him so he could recover. Since they would be his own stem cells there would be no complications. He cannot receive someone else's stem cells without serious medical intervention. Stem cell transplants from other donors have not shown effective against neuroblastoma and so the risk of giving him stem cells that are not his own, just so that he can recover from a treatment is not worth it, unless they came out with something they really felt was curative. Feel free to ask me more questions like that if you are curious. I have been at this for so long - I lose perspective of what I know compared to what the average person would know.

We are looking forward to this weekend because our good friends, Brian and Lori and their baby Scarlett are coming to visit. We have never met Scarlett and are so looking forward to spending time with our friends. If the weather holds we will be going to the zoo tomorrow.

Thanks for checking in - have a good weekend!

Wednesday, April 18, 2007 9:51 AM CDT

Things are going well around here. Nathan goes to the clinic tomorrow. Last night his school had a music program with all the first graders. Nathan got to be a blackbird.

I will update again on Friday.

Sunday, April 15, 2007 1:30 PM CDT

Well - the forecasted blizzard didn't show but they cancelled school anyway. We were able to go the clinic and Nathan's counts were pretty good. His platelets went up to 68,000! It will be interesting to see if they drop in a week or so. With the extra 10 days off of chemo last time, if they drop again we will know it was the chemo.

Nathan's doctor shared with me some of his blood test results. His LDH and liver function tests as well as Sed rate are all high. There could be many reasons for these numbers but they all can be an indication of cancer activity and his LDH has been slowly creeping up over the last few monhts and so I think we can say that his cancer is multiplying even though he is feeling so well.

I have been doing more research and have been in contact with some doctors and have, unfortunately, ruled out some treatments for Nathan. I am still looking, but I want to make sure that if we try something it has a chance to do better than what he is doing right now. We may just add on some things to what he is currently doing. I wish there was a trial with some promise out there for Nathan but there just is not. IF he only had some stem cells left...

So - he will go back in on Thursday to check his counts and go on from there.

Wednesday, April 11, 2007 9:02 PM CDT

I am finally feeling a little bit better so I thought I would update. (updated update - note the new March pictures linked to above)

Luke's parents and sister arrived last Wednesday and Thursday (both landing several hours later into the wee hours of the morning two night in a row!) The kids went to school Thursday and we kept Nathan home on Friday to spend some quality time with family. As usual, Nathan and Julia were thrilled to have their grandparents and aunt around. On Friday, Grandpa Mike started getting sick and then by Saturday morning I was coughing a little. Lauren got sick on Monday but so far, no one else is sick.

So, we had nothing really exciting going on, but spent some good family time together. Nathan was so sad when everyone had to leave. We are really hoping to make it to Illinois this year to visit them. For two years in a row, our Illinois trips have been canceled due to relapse. We are really keeping our fingers crossed this year that it can happen.

Nathan is doing fine. He is a little more tired than usual but we feel it is probably the chemo. He has not been having much hip pain, that we know of. Today he had class pictures at school. I am so excited that he got to do that! I can't tell you how lucky I feel that Nathan has been in school this whole semester and still going strong. He comes home so happy from school. I love to see him get off the bus with his big smile and come hold my hand as we walk to the house. He always has something fun to tell me. He has a wonderful teacher (Thank you Miss Skiba!) and great kids in his class.

The plan is for Nathan to go back and get his counts checked on Friday. I just got an alert on my desktop that there is a blizzard watch for Thursday evening/Friday so we'll see. With his platelets holding their own I am feeling comfortable about his counts right now. He did receive the red blood boosting medicine which I would rather he had not received since it can cause his platelets to lag with all the focus on the red blood cells. Hopefully it will not have too big an effect and I will have it put into his chart that I do not want that medicine unless he gets close to transfusion levels. He has always done just fine with a low hemoglobin. Low platelets are a bigger problem and I don't want them compromised.

I have to end with some sad news that the neuroblastoma family lost one of its precious children today,
Kendall. I don't know what else to say - it just makes me so mad and sad that so many kids are dying and we are no where close to improving survival.

Monday, April 9, 2007 9:27 PM CDT

A quick update, I am sick with what is probably the flu (the dr ran out of the test strips). Lauren has it too. So far, Nathan is fine. Luke took him to the clinic for his medicines today. His counts were better. His platelets were in the 50s.
We are all on Tamiflu and will hopefully feel better soon and I will update more.

Tuesday, April 3, 2007 10:03 PM CDT

So - I think "none of the above" may be the answer to the bone marrow questions.

His bone marrow is not failing. That is very good news.

His bone marrow aspirate has some scattered clumps of neuroblastoma in it. The bone biopsy was negative for neuroblastoma. So there is some cancer but not very much. To put it in perspective, the bone marrow in Nathan's left hip was almost completely replaced with cancer when he was diagnosed. When he relapsed last June, he had, I think, about the same amount of cancer in it and it was gone for the past few times it has been tested. This news is fine. I'd rather there be no cancer there but I expected there to be some, and there is. Nathan's doctor said he felt it was good news that there is so little and had there been 25% or more it would have put us in a very bad situation.

His bone marrow is 70% cellular. I don't quite understand this but this means there are various blood cells doing their thing and appear to be doing on OK job. What the test could not tell us is the state of his stem cells in his marrow. What we have to conclude is that the stem cells are not very good at making new blood cells and that is why his counts are poor.

Nathan's platelets were a little bit higher and his white count was higher but he has a cough so that is probably a reading that doesn't tell us much since illness causes them to rise. His hemoglobin dropped again! It has been going up and down like a yo-yo ranging from 8.2 to 11.8 in the last few months. It was 11.something on Friday and 9.6 today. Crazy!

so - I am not convinced that the chemo is not affecting his platelets (sorry for the double negative) but it doesn't really matter because we want to start chemo anyway. Nathan is having increasing pain in his hip (in his illiac crest - the big bright spot on the MIBG scan) and we are hopeful the chemo will help with that. He will receive the irinotecan at home tomorrow through Sunday and on Monday he will get the aredia and pentamadine. Time is really flying because we do those two every 4 weeks and it seems like every other week to me.

Other than the hip and the cough, Nathan feels good. He doesn't let anything stop him from playing or riding his bike.

I will update on the rest of the family soon - it seems liek a long time since I have done that.

Sunday, April 1, 2007 12:28 AM CDT

It's April 1, 2007. Four years ago, today, we first heard the horrible words "your child has cancer". Unfortunately, no one followed that statement with "April Fools!"

Nathan was two. Now he is six! I think at the time, I naively assumed that four years later Nathan would either be dead or be cancer free, not still in the battle.

I am so very grateful for these four precious years! They have been filled with terrible things, but mostly, they have been witness to a toddler growing up into a school-aged boy and I am so thankful we have gotten to see that happen.

I can't put into words how much I wish that this anniversary could be joyous, that Nathan was cancer-free, but I am full of joy that Nathan is here today. I am listening to him sing as I type this. He is happy and so am I.

Friday, March 30, 2007 7:39 AM CDT

Update 3:53 PM

Nathan had his bone marrows. It was pretty horrific because he did not fall asleep despite alot of fentynal and versed. He cried and said "ow" and was very upset throughout the procedure. Luke came along today and he stayed in the room with him. I could hear him from the other room. The only thing we do know is that the marrow does not appear to be full of disease. A good piece of news is that Nathan's hemoglobin AND PLATELETS went up. His platelets went to 41,000 from 39,000. They may not have actually gone up since if you run a cdc on the same blood sample more than once you can easily get a different results within 2,000. We know for sure they didn't go do though - and that is very good. His ANC was still the same at 900.

We will meet with his oncologist on Tuesday afternoon for the results and to make a plan.

Luke's brother will be here tonight and we are looking forward to his visit.

Thanks to everyone for your thoughts and prayers.

**********************************************
Nathan has his bone marrows later this morning and I will update later but first I must share my sadness with you in the passing of a wonderful teenager, Justin. Justin was diagnosed with Neuroblastoma around the time Nathan was and he and his dad, Dave went to Memorial Sloan Kettering shortly thereafter and mostly lived in NY away from the rest of the family ever since. We met them when we first went to Sloan and Nathan and Justin were on the same schedule for the 3F8s. Justin and Dave had the best attitude about the hand they were dealt. They went off and had great adventures together. Dave reached out to me, all alone with Nathan, and included me in some of those adventures on a lonely weekend. The one wonderful thing about being at MSKCC is the other families I have met and I always looked forward to seeing them and talking with Dave.

Please keep Justin's family and most especially, Dave, who was his full-time caregiver these four years, in your prayers.

Wednesday, March 28, 2007 11:07 PM CDT

Nathan went to the clinic today. His platelets had fallen, but only to 39,000 from 42,000 in about 5 days so that wasn't too bad. Unfortunately his ANC dropped to 900 - which is now neutropenic. It has been slowly dropping for several weeks.

So - we are left with a decision about chemo next week. Nathan's regular doctor is out and so I discussed it all with the other doctor and Luke and I have decided that Nathan will have a bone marrow biopsy on Friday. When we know what his bone marrow is doing then we will have an idea why his counts are low and can decide if chemo is the right thing.

There will be three possible outcomes. 1. His bone marrow is failing. 2. His bone marrow is full of cancer 3. His bone marrow has been knocked down by the chemo but will be able to recover (some).

Number 1 is obviously the worst scenario. If he is in bone marrow failure then we will have to stop chemo and I don't even know what. I imagine what will happen but I won't conjecture about it. If it is cancer in his bone marrow causing problems we may still continue with chemo. I actually think that while he may have some cancer in his bone marrow it is unlikely to be the main problem because I would expect him to be in pain and unable to walk if there is enough cancer to be causing this problem. If it is #3 - Nathan is being Nathan and not going by the book and this chemo is affecting his counts. We will give him some neupogen and see if his white count will come up. Beyond that - I don't know about treatment.

We are doing the bone marrows at 10:30 in the clinic. Both are bad things because Nathan will be starving and when he has bone marrows in the clinic he is not put under. He is given pain medicine and an amnesiac, so he won't remember anything or feel much but he will be awake. Luke was in the room with Nathan once when they did it this way - I don't think it was a very good memory!

I expect we will meet with his doctor on Monday to hear the results and discuss the next step.

As crummy as this all sounds - I am grateful tonight for how great Nathan is feeling. Please send your prayers to the families of Kendall and Penelope - Penelope is on hospice and Kendall has progressed and in a lot of pain and has not been given any good options for further treatment.

One day at a time - and today Nathan felt great and spent most the day playing with Julia.

Monday, March 26, 2007 9:13 AM CDT

I am still catching up on updating. Nathan went to the clinic on Friday morning for counts. His platelets were 42,000. So, still falling but not low enough to need a transfusion. Luke and I decided not to do chemo this week and just see what his platelets do. His doctor is fine with that but he thinks we should definitely do it the following week. I asked him if he thought that Nathan could still be getting any benefit from this chemo and he said he thought he was and so we will continue. He had originally said Nathan would not have more than a couple of rounds but I think he was assuming Nathan would have an obvious progression and since he still feels good we will do another round.

It is looking to be a long week with no school! Today we are going to a park and we might go to the zoo tomorrow. It will be in the 70s both days!

Lauren is recovered. She broke out in a big rash and she had roseola. Both Nathan and Julia had that when they were babies but the rash was never so severe. Even the doctor was impressed by it. I am always glad to see a reason for a fever. My paranoid cancer mom mind hates unexplained fevers. I was reading another NB kid's journal and they wrote "good news! our child has the flu!" I totally understand. That is the warped world we live in that flu is good news. Anything disease that is not cancer is good.

Nathan will go to the clinic on Wednesday for counts. So far - his nose is not seeping blood so I am hopeful he will not have to go in before then.

Thursday, March 22, 2007 8:31 AM CDT

I keep forgetting to update after Tuesday's appointment. Nathan's platelets were 53,000. So - they didn't drop a ton since Friday but are going down. Nathan's doctor wasn't there and so I picked the other onc's brain a little about nontraditional treatment. I have had some suggestions from some NB parents who are doing some serious research (several are doctors) about some things working in the lab. I am very hesitant to do anything without the full approval of Nathan's doctor, though. I will bring in some printouts for him to read on Friday and talk to him about a possible trial.

Nathan is doing pretty well. He had some serious leg pain last night at church and when pressed he said his leg had been hurting ever since music class at school. It turns out he had sat cross legged on the floor during music. I reminded him that he just can't sit cross legged and he just needs to tell his teacher. I have conferences today and so I will make sure everyone knows. I am not blaming anyone! Nathan is just too timid to speak up about it.

There is no school for the rest of this week and all of next week. We have no big plans. Lauren has been sick with a fever for a few days (she's been to the doctor and there is no reason for it). So today we will stay around home mostly and I have to gohe to conferences for Nathan and Julia. Julia's preschool does conferences since it is part of an elementary school.

Tomorrow Nathan goes back to the doctor to check his counts and I guess we will discuss if he will have chemo next week.

Tonight we are going to see Monsters Inc on ice with the Starlight Starbright Foundation. Since the kids have no school it is great timing to do something like that.

Sunday, March 18, 2007 1:29 PM CDT

I will pick up where I left off on Wednesday morning. I took Nathan in for platelets but I called ahead to see how busy they were and since they were not very busy I brought all three kids and we used one of the bedrooms at the clinic. He got the platelets pretty quickly and we didn't have to stay too long. His platelets had dropped 4,000 more to 18,000 overnight. We had lunch at McDonalds and then Julia went to preschool and Lauren, Nathan and I hung out at home.

Nathan finally got back to school on Thursday and then we went back to the clinic on Friday to check his platelets. He must have gotten a really good bag of platelets because on Friday (2 days later) his platelets were still at 72,000. So - we got right in and and out on Friday.

We are having the most glorious weather this weekend. Yesterday we went to a park and had a picnic. The kids were in shorts and short sleeve shirts. There were still piles of snow here and there left over from the blizzards in December and the pond was still frozen. We had a really good time and took some great pictures - I will put a couple on the photo page.

We went to Nathan's school last night for a dance for a little while and this morning Julia and Nathan's choirs both sang in church. We have a birthday party to go to later and the kids are planning to spend more time outside this afternoon.

Nathan goes back to the clinic on Tuesday. We are going to have to decide soon if he will be getting more chemo the last week of March or not. I am starting to look into other treatments. There are one or two we might be able to try.

Wednesday, March 14, 2007 9:20 AM CDT

Nathan and I spent all day at the clinic yeeterday for him to get Aredia and Pentamidine. When we checked his counts we were disappointed to see that his platelets have dropped another 10,000 to 22,000. We would have given him some platelets yesterday but with the other medicines taking over 6 hours we couldn't fit them in. I made an appointment for Friday but his nose has been bleeding off and on this morning so I plan to take him back in today to get platelets.

This may be the end of Nathan's bone marrow making its own platelets. There is no reason for them to be doing so poorly except that his bone marrow is not making them either because of disease in his marrow or because it is just to fatigued.

We have been having beautiful weather - sunny and 70s and were stuck inside all day yesterday and now we have to go back today. I also don't want to leave Lauren and Julia again today. So - I guess I am feeling sorry for myself today. Nathan is perfectly happy so I need to take my lead from him.

Saturday, March 10, 2007 8:49 AM CST

Things are going pretty well around here. Nathan received chemo at home all week. He came home from school early on Wednesday saying he was tired, but was acting very energetic so I am not sure what that was all about. I think he may have had a reaction to his last dose of chemo yesterday. He started coughing continuously and I gave him his inhaler and then some benedryl and stopped the chemo. He coughed off and on for the rest of the evening and seems better today.

Nathan got to do something special yesterday. While we were in Denver in 2003 for Nathan's transplant we stayed at a wonderful facility called
Brent's Place. We met and have stayed in touch with another family there. Their son, Andy, had Hodgkin's Lymphoma. He was around 19 at the time. Andy's love was trucking and he and his younger brother (Cory) planned to open a trucking company when he got better. Andy passed away in September, 2006. His family decided to honor his dream and bought a truck that his brother will drive. Yesterday they passed through Colorado Springs in the truck and we met them in a parking lot to see it. Nathan and Julia got to climb around the truck and sit on Cory's lap and steer around the parking lot. They also got to ride out on the highway. Nathan LOVED it! Andy's truck has a big cancer ribbon on it and on the side are names of people Andy knew who died from cancer and a caricature of Andy getting ready to climb into a truck with a hospital gown on and attached to an IV pole. They have named it the Bare Bottom Trucking Company. Thanks Patty, Doug, and Cory for taking time out to see us!

Today we are going to attend a St. Baldrick's event here in town. Several people who we don't know are shaving their heads in Nathan's honor. Nathan's Sunday School teacher will be at the event and she knows some of these people so we are going to stop by.

In family news, Nathan, Julia and Lauren have a new cousin! Jasmine Hope Ogren was born on Thursday to my brother Jason his wife Kristi. We can't wait to see her.

I almost forgot to mention that I added a "picture" to the photo page. It is Nathan's MIBG scan and you can see where his cancer is. Another family whose page I followed did this and I thought that perhaps it would help people to understand or maybe it is too medical - at this point I have no judgement for such things.

Monday, March 5, 2007 9:31 PM CST

Nathan went in for counts and chemo today. We were very disappointed to see that his platelets have dropped to 37,000. It is extremely unlikely that the chemo caused the drop and so the drop is being attributed to the ear infection Nathan had last week and the disease in his body. Nathan's bone marrow is just not very strong and has an especially hard time with platelets.

The decision about adding the additional chemo was pretty easy. No way would we add anything to hurt his platelet count further.

Nathan's LDH was about 25% higher than it was a few weeks ago. Although LDH can be high for lots of reasons we are hoping to use it to gauge Nathan's disease. This would indicate it is progressing, which is what we would expect. He continues to have arm pain today with no injury that we know of.

His energy level was really good today. I picked him up from school to get the chemo and then we went straight to the church where I had an extra choir rehearsal for an hour. He ate some McDonalds and played his gameboy and generally did really well.

He is not going back to the clinic until next Tuesday when he will get a Aredia and Pentamidine.

Nathan was talking about how much he liked flying into New York at night because he thinks the city lights are very beautiful. He is always making comments like that. He definately hs an old soul. I am so glad he can see the beauty of the things in his life.

Thursday, March 1, 2007 8:12 PM CST

I can't believe it is March already. Spring is nowhere in sight here in Colorado - it doesn't get nice for another month or so.

Nathan had a bout of diarrhea yesterday that led him to come home from school early. The poor thing went every 20 minutes for 6 hours. We have him back on Flagyl now and today he was fine. He had his clinic appt today and his counts were so-so. Actually they were OK except his platelets are still sluggish at only 54,000. Last weeks ear infection did them in a little so we are hoping they will go up this weekend. He is scheduled to start chemo on Monday. This time we may add the temador - which can cause low counts. If he gets it - it will be a very very low dose. I am having mixed feelings about it.

Other than the problems yesterday he is feeling pretty good. He has hip pain here and there - especially if he has to sit cross-legged. We have tried to tell people not to have him sit on the floor so - it doesn't happen often.

Lauren is on antibiotics. She has been extremely fussy for almost 2 weeks and I finally took her in. Her ears were clear but the nurse practitioner could her some crackling when she was breathing. Her lungs sounded clear but she thought Lauren should either have a chest x-ray or just go ahead and get on antibiotics so we chose the nix the x-ray. She seems better. She is an incredible crank in the morning. Now - we just need to figure out what she needs when she wakes up.

Julia really didn't get the sickies like the rest of us. She is doing well. I got to take her out to lunch today - just the two of us. It was really nice to spend one on one time with her.

I think we have a pretty quiet weekend in store and then Nathan will go to the clinic on Monday to start chemo and have it at home the rest of the week.

Saturday, February 24, 2007 4:24 PM CST

If you look at Nathan's new picture you will see he has new hearing aid molds. He wanted RED this time! A big thanks to the audiologist and hearing-impaired teacher in Nathan's school district for doing this for Nathan. His old molds were not fitting well and he was having feedback almost constantly. The kids at his school table will be happy too.

Nathan went back to school Friday and had a good day. He feels completely better. Now if we could just get Lauren perked up and hope Julia does not get anything worse than the cough she has. Luke and I need to stop hacking as well.

We are having a good weekend so far - I hope you are all as well.

Thursday, February 22, 2007

Nathan is feeling much better today. He had a good night of sleep and woke up very chipper. He was surprised he wasn't going to school but then he and Julia had a good morning playing together. His ear looked much better and they gave him one more dose of the antibiotic. His platelets had gone back up also. His thyroid test came back fine. His MCV is still quite high. We started him on a multi-vitamin so we will see if that helps.

Lauren is feeling crummy and has a fever now. She has been off and on sick for the last 10 days or so. I just panic when my other kids are sick - even when there is a known cause. I just don't know how to deal with it. Hopefully she will be better tomorrow.

Nathan goes back to the clinic next Thursday unless something crops back up.
******************************************
Wednesday, February 21, 2007 7:32 PM CST

Well - I got a few calls from Nathan's school this morning. The first was that his hearing aid was bothering him. I told them he is expecting a new one any day and that he could just take it out. At lunchtime I got another call that he was in the office and had been in several times and needed to come home.

I went and got him and his temperature was 99.5. He tried to eat and couldn't and went to bed and slept for about 45 minutes. He woke up and he ear was hurting him really badly and his temp was 101.9. So we went to the clinic. His doctor had looked in his ears yesterday and they were fine but today it was clear he has an ear infection. He has been is so much pain. He just whimpers. They gave him some antibiotics and after much waiting around we came home. I gave hims some narcotics and some ear drops and he perked up for dinner. After dinner he wanted to go to bed and so he did. I imagine he will be up when the drugs wear off. Poor thing was in so much pain.

His platelets dropped from 58 to 48 in just a day. Fever kills off platelets plus his marrow is making bunches of white cells right now to fight the infection.

I will take him in again tomorrow where I think they will give him more antibiotics and also do more blood cultures. Since he has a port he has to have blood cultures done when he gets a fever.

Hopefully those antibiotics will kick right in.

Tuesday, February 20, 2007 10:32 PM CST

Last night Nathan was so tired that he went to bed over an hour early. Then, he had a nose bleed in the night. This morning he went to school but looked quite tired. I got a call around lunchtime that Nathan's legs had once or twice buckled out from under him. I moved up his appointment and brought him into the doctor. He told me he had also gone to the nurses' office complaining of a stomach ache but he decided not to have them to call me and to go back to class.

By the time I got him he seemed pretty good and has not had any more leg problems. He is still dealing with the bad virus that we have been passing around our house. He was the first to get it over a week ago and is still somewhat sick with it. He has lost over 2 pounds in the last week. His appetite is just not where it usually is. His red blood and platelets dropped this past week. His white count is pretty high for him. This may mean that this virus he is battling is causing him to burn up his platelets and would also explain the higher white count. We can also throw into the mix that one of the values on his CDC (MCV) is abnormally high. It was first high two weeks ago and was again today. This can be caused by malnutrition, but Nathan's diet is excellent. I looked it up myself and see that it can also be caused by hypothyroidism (which could be the problem since MIBG can make the thyroid stop functioning) or also can be a sign of a secondary leukemia. I will ask them to test his thyroid function next week. I am trying not to even think about the secondary leukemia thing....geez.

As far as the legs, his doctor could not detect any problems. He had Nathan do all types of physical tests. I only heard what happened second hand and so we had that and Nathan's description, which were not the best. My concern is that we know that Nathan's spine has cancer in it. There has never been any tumors on his spine but I suppose at some point that could happen. If this happens some more we may do an MRI.

Nathan was tired again tonight. It is really hard to see him having a harder time. I just hope this is temporary and not a start of a decline.

He will go back to the clinic on Monday unless we are concerned about him and if so, I will take him back in at the end of the week.

Saturday, February 17, 2007 8:01 PM CST

Just checking in for the weekend. Nathan did fine with his chemo this past week. He attended school all day and had his chemo afterwards. He even went to church hooked up to chemo and was attached while we ate dinner. It didn't phase him at all. I stopeed by his class part on Wednesday and he seemed to be having a good time. I went to Julia's as well. There were some moms who had been to three or more parties that day!

We went to church this morning where Luke and I became members. The kids were in the nursery and had a pretty good time and we went to lunch afterwards. More church tomorrow and then the kids have Monday off but Luke is working so we will probably have a lazy day at home.

Nathan's leg was hurting him this morning. It had been awhile since he had that pain. I think he mostly hurt from sitting funny since he has been fine the rest of the day.

Nathan goes back to the clinic on Tuesday for blood counts. We are hoping they won't drop at all from this chemo and most certainly he won't have dropped yet if he is going to so we should have two weeks of not much medical stuff going on.

Tuesday, February 13, 2007 10:54 PM CST

A little medical update....Nathan and I spent 7.5 hours at the clinic yesterday where he got chemo, pentamadine, and aredia. He did great with it all and he spent his time doing schoolwork, building a new lego vehicle and finishing his Valentines. For such a long day it really wasn't bad. He feels a little crummy but it is due to a bad cold. The rest of his chemo doses this week came to the house this morning and he got a dose after school today. We are not doing the other chemo (pill - Temador) this round. It would be better to do it as far as cancer stuff but we are concerned about Nathan's bone marrow. After we see how he does on this round we may add it next time.

Hopefully Nathan will continue to feel well the rest of the week and continue to be able to go to school all day. He amazes me with his stamina!

Sunday, February 11, 2007 1:25 PM CST

I will write about our trip but first I wanted to mention a few things.

I want to share with you something we are very sad about. We got to know a beautiful, funny and affectionate little girl from Spain while we were living in NY. Gemma was also battling Neuroblastoma and she passed away on January 25. She was 5 years old. We also got to know her wonderful parents, Delors and Jordi and we ache for them.

The second thing I want to mention is that my cousin, Matt Dick is once again participating in St. Baldrick's this year. This will be the third year that Matt has shaved his head to raise funds for Childhood Cancer research in Nathan's honor. We all got to attend the event in Chicago last year and had a great time. Nathan even got to be the first to take some swipes at Matt's head. If you are interested in sponsoring Matt you can do so
here. I will also put this information on Nathan's page above the journal entry.

Now - onto the trip!

We had a very smooth flight to Orlando on Friday. It was almost five after we checked in. We stayed at the Nickelodeon hotel. One if its features was a very elaborate pool area with lots of water slides. It was about 72 degrees when we got there and we knew that it wasn't going to be that warm for the rest of our stay and so the first thing we did is get on swimsuits and go down to the pool. Nathan and Julia got to try everything out and swam for about 45 minutes until they got too cold. Lauren swam some too and was also cold but didn't want to get out. There was a zero entry pool she could walk right into.

We decided to eat dinner at the hotel and it turned out to be pretty good food.

The kids got to play in the room for a little while. Their room had bunk beds and a curtain and Luke and I had a separate room with a door and there was also a living area. We put Lauren in with the kids in a crib.

The next morning it was a little drizzly but we were definitely going to go the the Magic Kingdom. It wasn't very crowded and I was able to get Nathan a card that let him skip waiting in most lines. We rode everything once and some things twice. Nathan was most excited about the roller coasters and his first chance to ride Space Mountain. I couldn't convince him to ride Splash Mountain so Luke and I rode that one by ourselves. Nathan rode the little coaster in toon town a few times and Julia decided she wanted to try it. It turns out she loved it and one of the highlights of that day was sitting bhind the two of them while they rode together on it and watching their little heads bob about and giggle to eachother. It drizzled here and there but really wasn't bad. All the rides were open and we had a good time riding them. We didn't have the camera that day and it was kind of nice not to worry about taking pictures.

We tried to eat at Disneyworld for dinner but there were no openings at any of the restaurants and so we went back to the hotel to eat.

The next morning we went off to visit Give Kids the World. This is where we stayed on Nathan's Make a Wish trip. It was great to go back and walk around. The kids rode the little train and spent time looking at the massive model train room. We also had some ice cream.

After that, we went to Steak and Shake for lunch. I LOVE Steak and Shake and they don't have them in Colorado so that was on my agenda and it is right next to GKTW and so it was convenient. We went back to the hotel after that and relaxed in the room until the kids decided they wanted to swim. It was only about 63 degrees but they gave it a shot. They probably lasted about 15 or 20 minutes. I had the camera for that one and you can tell Nathan is cold!

After swimming we went to Downtown Disney to go to the Disney store and Lego store. We had a good time at both an d Nathan was especially thrilled with the Lego store. My parents met us down there and we all went to the Rainforest Cafe for dinner.

On Monday we started the day at MGM studios. Luke and I wanted to ride the Rock and Roll Roller Coaster. I was pregnant both previous visits to Disney World and so never got to ride it. It is one that you start out still and are shot out like a cannon onto the track. We went off to ride while my parents took the kids to a Muppet Show and a playground. Luke and I also rode Tower of Terror. I swore I never would since it is one of my worst nightmares but I felt compelled to give it a shot. I am glad I did but I don't have much desire to do it again. We got some lunch after that and then saw the Little Mermaid show and left. We went to Epcot after that and we all had more fun than we thought we would there. The kids loved the Test Track and Soarin' We took them to see the area where the water jumps and they got a kick out of that. We went on a few other mild sort of rides and then had dinner in "Mexico". After dinner we rode Test Track one more time and them called it a day.

Tuesday morning started out with a character breakfast at the hotel. Sponge Bob, Squidward, Patrick, Dora and Little Bill were all there and the kids had a great time meeting them. It was our last day and we spent the day at the Magic Kingdom again. We started the day at the Runaway Mine car roller coaster. Julia decided she wanted to try it and she loved it too. We rode that twice and then walked back riding different rides as we went. We rode Space Mountain and Julia decided to ride that one too. She was just tall enough and loved it. I was impressed. Nathan loved it again of course. I should mention that during all of this my wonderful mom took care of Lauren and sat with her while we had fun on rides. Lauren went on several rides though and really enjoyed "It's a small world".

We had an early dinner at the Grand Floridian Hotel with Cinderella and her cast of characters. Julia especailly enjoyed that! After dinner we went back to the MAgic Kingdom and staked out a place to watch the nighttime parade. We bought the kids some light toys and they played with those while they waited. Lauren had fallen asleep and so if you see a picture of us at night in front of Cinderella's castle, Lauren is absent since she is asleep in the stroller. We watched the parade which was really cool and then left the park and took the ferry back to the parking area. We stayed at the dock and had a great view to watch the fireworks. We went back to the hotel and went to bed and left top come home the next morning.

There was nothing we would change about the trip. We got to do absolutely everything we wanted and the kids had such a good time. I am so happy we decided to do it. We made some really wonderful memories.

Friday, February 9, 2007 4:17 PM CST

I finally have a few minutes to update. We have been very busy since we arrived home.

I will go all the way back to last Thursday where I last wrote.

Thursday night we attended a fundraiser for Nathan at his school. The weather was lousy but the turnout was amazing. They had games from the company "Simply Fun". Part of the proceeds of the sale of these games was given to us. There was also a bake sale and a donation box. Nathan and Julia had so much fun! They did not want to leave when it was over.

I absolutely love Nathan's school. Everyone is so friendly and caring and it is like a big family. If there are any readers out there who contributed to the fund raiser... Thank you!!!

We left very early Friday morning due to snow. Luckily it had snowed far less than forecasted but it was COLD. As we drove to Denver the temperature (not wind chill) was -19!!!!

In fact - when we were almost to the airport the runds got a little messy and we needed to clear our windshield. Unfortunately it was so cold that the windshield washer fluid was frozen. We had to pull over every mile or two and wipe it with baby wipes. It was nerve-wracking but we made it to the airport and got the windshield cleaned off. The next snafu was that I forgot Lauren's birth certificate and Southwest airlines requires proof of age for lap children. they suggested I call the hospital and so I did and was able to get faxed proof in about a half and hour. We were very lucky. After that everything went smoothly.

I am going to skip forward to our return because I will write a separate entry this weekend just about our trip.

We returned on Wednesday afternoon and got to settle in for about 2 hours before we had to go to church. The kids are singing in the service this weekend and so they needed to go. It was tiring and we were all 2 hours ahead but we made it. Yesterday it was back to school and last night Luke and I went to a concert (Lyle Lovett, John Hiatt, Joe Ely and Guy Clark). Also - fun but tiring!

Today I went on a field trip with Nathan's class (to the same venue I had been to the night before) and saw a play. It was an adventure to accompany 22 first graders on a bus and it was fun. I had a hard time staying awake during the play because I am still so tired.

This weekend should be fairly calm and I will write about our trip. Meanwhile, in case you missed it, there is a link to Disney pictures in the journal history.

Monday, Nathan will be at the clinic all day for various medications, including chemo.

Wednesday, February 7, 2007 5:13 PM CST

No time yet for the written update but here are the pictures.

Luke and I were busy having fun too - so there are not too many!
*************************************

We just got back today from our wonderful trip.

Details and photos will follow soon.

Nathan is feeling very well and was able to fully enjoy himself.

Wednesday, January 31, 2007 10:22 PM CST

Nathan went to the clinic today for blood counts. We were very pleased to see that his counts have continued to rise on their own. Perhaps this is why he seems to have more energy every day. I saw him burst out running several times today. It is truly wonderful to see.

We are still tweaking his treatment plan but we had a good discussion with his oncologist and I feel confident that we will do the right thing for Nathan and his blood counts.

Tomorrow night some teachers and a classmate's parent are holding a fundraiser to benefit Nathan at his school. They are selling board games (can't remember the company's name right now) and the teachers are having a bake sale. If any of you local folks want to stop by it is at Prairie Hills Elementary from 6:30 - 8:30. We will be there for most of the evening.

Our Florida trip is fast approaching and the kids are excited!

Monday, January 29, 2007 3:42 PM CST

We had a phone call with one of Nathan's oncologists in NY. We discussed several options for him and I think can up with a good first step. He seemed surprised and pleased that Nathan is feeling well and not in much pain. Hopefully this means his cancer is not progressing very quickly and we discussed our goal of trying to keep things stable for as long as possible.

We are not starting anything until we get back from our trip to Florida but after that we will probably begin irinotecan/temador (5 days) and zometa once a month. We may also add some supplements (with the oncologists' ok of course). He has had the irino/tem combo before. It is a chemo but is pretty mild and he will only get half-dose or so of the temador which can lower counts. He had a great quality of life on it. The temador is oral. It does cause low counts but when he was on it before he never needed a transfusion or neupogen so it should not cause any problems. The irinotecan can cause diarrhea but, once again, did not give him too many problems in the past.

We will see how his bone marrow tolerates the chemo and we will test his urine and LDH levels after one round to see if things have gotten worse or not and go from there.

We may consider a vaccine for Nathan. It is something that doesn't involve strong chemo so it may be worth a try. The vaccine in NY is not yet open (18 months after Nathan was supposed to start it as part of an old plan) but we may do that. It would depend on how much travel there would be.

We feel like a trial would need to be pretty promising as far as reducing the cancer or holding it back to make it worthwhile to take Nathan somewhere else for treatment again. They offered Nathan a version of antibodies but we don't feel the time spent away from home would be worth it and he would likely get a HAMA pretty quick too. However - we will review our options again in a month or so. We are not going to stop treatment on Nathan while there are still treatments that will keep him feeling well.

That's where we stand.

Thursday, January 25, 2007 7:57 PM CST

Some good news today.

There are no tumors on the cat scan and Nathan's platelets and red blood are finally going up on their own.

The cat scan did show that his bones are being weakened by the cancer in them but that was no surprise. I am just happy there are no tumor posing a risk to his organs or spinal cord.

I am very happy about his counts. He will not go back to the clinic until next Wednesday. We have an email into the docs in NY and hope they will help us to decide what to do next, treatment wise. We will want to start up on something after we get back from our trip. We are just crossing fingers nothing changes before we are scheduled to go. Nathan is feeling so well right now. He is energetic and happy and jumping around. His limp is almost unnoticable and he has not complained of pain for at least a week.

I am so thankful for this period of him feeling so well and able to do anything his wants.

Monday, January 22, 2007 7:41 PM CST

Happy Fifth Birthday Julia!!!!

I can't believe our beautiful little girl is a five year old!

It is also hard to believe that Julia was Lauren's age (14 months) when Nathan was diagnosed.

We had a great weekend. Saturday morning we headed off to Greeley to visit my brother and his family. The kids played and we went to a very fun indoor pool. It was nice to relax and hang out with family.

We had a snowy drive home on Sunday but made it home safely in a reasonable amount of time.

Today there was a 2 hour delay for school due to the snow but Nathan caught the bus at 10:12 and was at school until 2:30 when I picked him up and took him to the clinic.

His counts were pretty good. He had platelets Last Monday when they were 33. On Thursday they were 97 and today they were 57 and so they are holding fairly well. We have hope that perhaps they will not fall any further. His hemoglobin went up almost a whole point and his white count is pretty stable with an ANC of 1300.

Nathan felt good all weekend. He was able to go up and down all the stairs and romp around the pool. His hip is seeming to hurt him less and less.

Nathan has his cat scan tomorrow morning and will go back to the clinic on Thursday.

Thanks for all the messages. I was a bit surprised by the responses because I guess I have known the situation for a while but it was more news to all of you. We continue to live life each day at a time and enjoy school and play and family time. Nathan is here with us today and that is our focus.

Thursday, January 18, 2007 7:24 PM CST

Well - we have the official report. Nathan's cancer is much worse. They want to do a cat scan to see if any of the new spots are tumors. This is mostly to help us decide what to radiate if it comes down to trying to relieve symptoms or to keep a potential spinal tumor from paralyzing Nathan or other bad stuff like that. They were going to try to do it tomorrow but Nathan has some sort of special activity tomorrow at school so I told them to wait until next week - so it should be on Monday or Tuesday.

We discussed some potential things to help slow the progression but this is really outside of Nathan's doctor's expertise. He is willing to look into things for us. We will see if the NY team can recommend anything. There is nothing that can stop the cancer now. We would love to put the brakes on it.

Nathan was in the room with us so we didn't talk about what this amount of disease means as far as how quickly things could turn bad. I think his doctor senses that I know how bad things are and he doesn't need to tell me.

We will have to have that conversation sometime soon though.

Meanwhile we are planning some fun. We are going to go to Disneyworld very soon. Nathan and Julia have been wanting to go back ever since we went there for Nathan's Make-a-Wish trip. They want to stay in the Nickelodeon hotel that has a waterpark. We booked it last night with a cancellation policy in case we can't go. We are not going to tell the kids until we are sure it will happen.

We are hoping to take this trip while Nathan is still feeling well. After we get back we will probably start the next step, whatever that may be.....

Because I know how great you all and and how much you want to help I am sure some of you will write wanting to help us take this trip and I can tell you that it is taken care of.

Wednesday, January 17, 2007 10:05 PM CST

Nathan's scan went fine today. It looked pretty much the way I expected. Lots of hotspots and they looked a little bigger and brighter. We'll see what the official report says.

He also got his hearing aides adjusted and after we got in the car he was hissing in the back seat and said he was whistling. I told him that was actually what "s" was supposed to sound like!

It was a tiring day but we convinced him to go to choir this evening and leave early and I think he enjoyed himself.

I am too tired to write anymore. I will update again tomorrow.

Monday, January 15, 2007 10:20 PM CST

Nathan's platelets were down some more today so we gave him some since his nose has still been bleeding a little. His hemoglobin was back up a little and his white count was down a little. We keep waiting for everything to trend up.

His urine test came back and they are higher than the last which would indicator more cancer. This would not be a surprise. His MIBG scan is on Wednesday and so we'll just see what that shows.

His hips and legs have been hurting him less and he has been more and more physically active. I suspect we'll see these symptoms bounce around as well.

He is back to school tomorrow and then has his mIBG injection in the afternoon,, his scan Wednesday morning and has a hearing test and hearing aid adjustments Wednesday afternoon. He will go back to the clinic on Thursday afternoon. I expect that we will discuss the MIBG scan results at that time. We will be sending a disc to NY and the team there will discuss Nathan's options and we will also discuss them with his local doctor.

Saturday, January 13, 2007 9:38 PM CST

Well - due to a "lab error" the blood test Nathan was supposed to get results on Friday morning was not run. I finally found that out around noon. His doctor relayed that I should bring him in for a CBC Friday afternoon. I called him back and we discussed it and I decided I didn't want to take him out of school and drag him down there since unless his hemogloib was very low we would want to wait until Monday for a transfusion anyway.

Instead - Nathan had a good day at school and fun at Tammy's for dinner while Luke and I got out to eat without the kids (Thanks Tammy!)

Today Nathan woke up with a seeping nose. Instead of just pink drainage he actually had blood slowly dripping out of his nose all day. Around noon we decided to call the doctor. It took him a while to get back to us and then we had to numb Nathan. I accessed him and put his blood in an empty tube I had and went to the hospital with it. I had to register and then bring it to the lab and it turned out that it was the wrong tube. So - I called Luke and he brought the kids to the hospital and I drew more blood and put it in the right tube and then we went off to the mall to await an answer. After an hour and half we got the message that his platelets were 43 and hemoglobin 8. Both fine to wait until Monday. His nose is still bleeding some but we will just have to deal with it. It is not bleeding enough to cause Nathan too much discomfort. He just has to wipe it every once in a while.

Lauren has been sick for a few days. We don't know if it was a virus or teething since she had a low fever and diaper rash and is cutting several teeth. Today she finally kicked whatever it was and is feeling much better. We are hoping for a better nights sleep tonight.

We are expecting more snow tonight and tomorrow on top of negative temperatures. We sure are getting some wintry weather lately! Hopefully it won't keep us from church tomorrow.

Thursday, January 11, 2007 10:20 PM CST

Nathan went in for counts today and his platelets were too high to transfuse but most likely still dropping so we will just have to hope he makes it through until Monday. His hemoglobin dropped again. He was a point away from needing red blood. His doctor is running an additional test that should tell us if Nathan is creating new red blood cells or not. If it comes back that he is not he will probably have a blood transfusion tomorrow. It is concerning that the hemoglobin dropped again in that it might mean that the cancer has come back in his bone marrow. Although he has cancer in lots of places, his bone marrow has been clean for a while.

Nathan is also havinng increased hip pain and leg problems. Yesterday he said his leg was "asleep" all day and he was having difficulties climbing stairs and was limping pretty badly. He needed tylenol three times. Today his leg function is better though he is still limping. He didn't have as much pain though. The doctor keeps doing a very thorough exam and is not able to recreate any pain in Nathan as he moves his leg about and has Nathan do all kinds of stuff. It is very strange.

Nathan is still doing all activites despite all his issues (including a constantly running nose with a little blood in it). Last night, after all the leg stuff and all day at school Nathan went happily to church and did choir and music for 2 hours. He is so stoic. He really just wants to do and he pushes the pain out of his mind. I was telling his doctor that I wonder how much pain he has because I suspect he is in constant low-level pain with the leg but he does not even want to acknowledge it. At times I see him bouncing and wiggling in such a way that I know he is trying to deal with pain but if he sees me look at him he smiles and bops around and hums on purpose and I think he thinks he is hiding it from me.

Nathan has his MIBG scan on Wednesday. When we get those results we may have a better idea of what to do for NAthan right now. With his counts not recovered there isn't much but we are looking into some things for now that may help with symptoms. I suspect the scan will not help with decisions. I expect it to be worse but not terribly different. We'll see. For now the plan is to keep Nathan's pain under control and keep him going to school and church like he wants.

Monday, January 8, 2007 8:17 PM CST

We had a good and quiet weekend.

Today I took Nathan into the clinic first thing in the morning to check if he needed a blood transfusion. Fortunately the medicine had kicked in and his red blood count was up but this time his white count was down some. His platelets had dropped to transfusion level again and so he got platelets and also some pentamidine (monthly infusion). The premeds for the platelets made his sleepy and I wasn't sure he'd wake up enough for school but he did. He got there about 12:30 and so he got a few hours of school in. He is student of the week this week and so he made a poster about himself and we brought it in.

He will go back to the clinic on Thursday. I will be scheduling his MIBG scan tomorrow for sometime next week.

I almost forgot to mention that Nathan has gained almost 4 pounds back from when he got back from NY. We are encouraging him to eat whenever he is hungry and so he is eating every two hours. It is working! This weekend we saw him run several times and he looks a little less skinny.

Friday, January 5, 2007 8:50 PM CST

Nathan had a great time at school Wednesday and Thursday. He came home happy and only a little tired. He participated in everything - even PE. It was wonderful for him.

Today he was going to be leaving school early to go to the clinic but we had MORE snow last night and school was canceled so we went in a little early. He surprised us by not needing platelets (though they are probably still going down). His hemoglobin took a big hit and is at a level for transfusion. However - he was also due for the medication to boost red blood counts and so he got that and we are crossing our fingers that he won't need a red blood transfusion on Monday. It is a little concerning that his red blood counts are dropping. We hope it is just his counts bouncing around as they continue to recover and not an indication of disease in his bone marrow.

It is amazing to see the daily change (for the better) in Nathan's strength and energy. We are so thankful for that. His leg and foot pain has lessened. His leg pain seems to come on suddenly if he is sitting in a certain position and so we try to tell him not to sit that way - but that is how he has been most comfortable in the past. He has been checked over and upon examination there is no explanation for the pains he is having.

We are looking forward to a laid-back weekend with no real plans besides church on Sunday.

Tuesday, January 2, 2007 5:18 PM CST

Happy New Year!

I am pretty indifferent about the new year this year as I feel it is unlikely to be a very good year and could likely be the worst year ever - but I am trying not to think about it very much.

We actually stayed up this year for the first time in many years and watched the firework set off on Pike's Peak at midnight. We then went and woke up the kids to tell them Happy New Year - as promised.

Nathan went to the clinic today. All his counts are doing OK except for his platelets which were fairly low again and so he had a transfusion. He will got back on Friday and most likely have another transfusion.

We have pretty much decided not to do scans in New York as scheduled. The benefits of going there seemed to be outweighed by the very strong desire to NOT go back to that place just yet! For now, we want to know what Nathan's disease burden is. We are not planning on entering him into a clinical trial right now - which would require a full set of scans. Our current plan is to do only a MIBG scan locally. His bone marrows and cat scans have been clean for months and we do not want to put Nathan through anything extra right now.

We are still trying to figure out what kind of treatment Nathan should have next. For now, we are ruling out any treatment that will cause Nathan to be neutropenic and transfusion-dependent. This does not leave a whole lot. We also want to keep him at home for now. In a month or two perhaps we will be ready to consider other things. Nathan can't have any more treatment until his platelets recover anyway - who knows when that will be.

The only problem with not going to New York is that we can't talk to the doctors there face-to-face and figure out the best plan for Nathan. Perhaps we will be able to speak to them on the phone but it is never as informative.

Our most immediate plans are for Nathan to return to school tomorrow and to continue attending for the next several weeks. I imagine there may be some days he will not stay all day and he has been having hip pain that might cause him to come home but I think it will be a good thing for him and he is very excited about getting back to school.

Thanks for checking in with us.

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