Tuesday, April 29, 2003

Tuesday, April 29, 2003 1:10 PM CDT

Luke here.

Not much to report really. Nathan was in for his counts and an exam yesterday. All was good. He has gained weight and his counts were up. His immune system counts were very high and that is great. His hemoglobin was good, not great, but good enough that he didn't need a red blood cell transfusion. His platelets are up, but not enough to begin chemotherapy, so we are a little uncertain about what the rest of the week holds. Tomorrow we will go in to get his counts. If his platelets are up enough, he will have a bone marrow aspiration and then full day of chemo. If his platelets aren't up, then the three day course of chemo can't start until Monday and we aren't sure about whether or not he would get the aspiration or if that would wait until Monday too. We are a little torn on this. Since Friday he has been doing great, eating well

From April 2003

and feeling better than he has since before getting the diagnosis. He is doing well enough right now to be pretty much off of most of the meds he was taking and not tied to the nutritional supplement. A few more days of feeling good might go a long way for him. On the other hand, we do want to stay on "schedule" with treatment as much as we can. At least the decision will be made for us. If the counts are up, we start. If not, we wait and enjoy another good weekend.

Special thanks to Josh and Jae for visiting. What a great weekend it was for them to be here. Nathan was feeling well and excited about the company and Julia really had a great time too.

Wednesday, April 30, 2003 7:50 PM CDT

Susan here -

Today I went in with Nathan to see if his counts were high enough to start chemo and they were borderline but good enough and so we began. His bone marrow biopsy is tomorrow. Luke will be going in with him tomorrow because three 8 hour days in a row would rob me of my sanity. Julia will be getting her MMR vaccine tomorrow - we have been waiting to do it when Nathan's immunity was fine.

He had a pretty good day but refused to nap and by the end of the day he had had enough. He also ate and ate and ate. He has been eating constantly ever since he started up again. It is good, but I was concerned with him making himself sick!

I imagine there is more to say but I am completely drained from a long day. I'll fill in anything missing tomorrow.

Monday, April 28, 2003

Monday, April 28, 2003 10:04 AM CDT
Luke here...
As predicted, nothing much to report. We have had a very good weekend. This was a three day weekend for us as we had no clinic or hospital visits on Friday. Nathan has been in great spirits, eating well, playing some, engaged, etc, etc. It really is marvelous. He is feeling and acting better than he has since before his diagnosis. It is a little bittersweet knowing what kind of hard week we will have this week, but it is mostly heartening to know that he can feel well and be happy.

His Uncle Josh and Aunt Jae (my older brother and his wife from Albuquerque) are here now. They came in yesterday afternoon and will leave tomorrow morning. Combined with his feeling better and his apparent starving for social activity, he is having a ball with them. When they came in we all ended up on the floor talking and he just talked and talked and talked to them. It was great. And then miracle of all miracles he actually wore the backpack that carries his nutritional supplement and pump himself so he could walk around and show them things. Julia is very much enjoying the company as well. We really enjoy seeing the kids with family.

This week things will probably start to go downhill a little on our rollercoaster. Today Nathan goes in for his counts. It should be a quick visit. We are expecting the need for a red blood cell transfusion tomorrow. They will want his hemoglobin count up before the second course starts and we doubt his body has brought it up enough. We will be hoping his platelets are up too. He has to have those up pretty high and unsupported by transfusion before they will start the second course of chemo. If all goes well, the second round of chemo will start Wednesday. So, our week will look like this:
Monday: Quick trip to clinic for counts and exam
Tuesday: Probable RBC transfusion (3 to 4 hours in clinic)
Wednesday: Bone marrow aspiration followed by full day of chemo
Thursday: Full day of chemo
Friday: Full day of chemo
After that we start the waiting game again waiting for him to crash from the chemo, trying to get him through his neutropenic period without hospitalization, etc, etc.
I hope you all had a good weekend.

Saturday, April 26, 2003

Saturday, April 26, 2003 11:15 AM CDT
Hi - Susan here
Nathan had a good day yesterday. No clinic visits and he was healthy enough to go out and so in the morning we went to the zoo. Nathan was joined by his friends Catherine and Bo.

On the way home I was giving Julia some cookies and I offered him one and he ate it and the proceeded to eat more food the rest of the day; ice cream, muffins and chicken nuggets. Needless to say we are very happy about this.

He refused to nap and Julia didn't really either so we went off to the mall (against one of our doctor's wishes) and got Nathan some new hats. He was in the stroller the whole time and so fairly safe from germs.

We had to change his dressing on his chest tube last night and so that was a big fight. We only have to do that one a week at least.
Please check out the photo album page - I added a few new pictures.

Friday, April 25, 2003

Friday, April 25, 2003 9:39 AM CDT

Luke here...

Nathan was in the clinic yesterday for a platelet transfusion and to get his blood counts. Good news on his counts, he is coming back up very well now. From Wednesday to Thursday his white blood cells shot up and the calculation they use for his overall immune system status jumped him from out of the high risk for infection range. In general he is feeling better, doing more, and much more engaged. He still refuses to eat or drink and that is troublesome. He yawned wide this morning and said it hurt. He really has demonstrated a pretty low threshold for pain in the past and it is going to make things hard with eating when he has these mouth sores. He is tied to a rather large backpack that carries a nutritional supplement and pump that "feeds" him through his broviak. It is become tiresome to follow him around carrying his backpack. We will obviously continue to do what we have to do, but if we could get him eating well enough to get off of that supplement for at least a little while each day it would be wonderful.

We saw the more conservative of his doctors. He really didn't want him out and about this weekend even though he is out of the high risk range. We will have to balance what we feel is best for Nathan versus the risk. He is scheduled to start his second course of chemo on Wednesday. Next week will likely be a transfusion (red blood cells) on Tuesday followed by full-day chemo treatments Wednesda, Thursday, and Friday. Then his little body will start to collapse on us again. The doctors hope the first round cleared up his marrow enough that he won't crash as soon and will rebound quicker. It is hard to say though. We would love for him to do some normal things before we start this all over again.

Before the chemo on Wednesday they will do a bone marrow biopsy to see how effective course 1 was in treating his marrow. The hope is that after course 2 they can do the bone marrow rescue to store his cells for the transplant to be done after all courses of treatment. They want to do it early for several reasons, one of which being that storing the cells has a positive effect on the number of cancer cells that live in the stored marrow. They don't take it until they can't detect cancer, but it is possible that some are there and escaping detection. Apparently the cancer cells don't handle long-term storage well. I found that interesting.

I'm rambling on a bit this morning. I'll close here with a somewhat sad Nathan quote of the day. I don't mean to depress, but to share honestly with everyone Nathan's journey and state of mind. Susan went to pick up Julia from the friend who was watching her while Susan and Nate were at the clinic. The friend has a little girl that just turned 3 who is one of Nathan's best friends. Catherine came out to the car to wave and say "hi" to Nathan. When Susan got back to the car, Nathan obviously remembering how he used to play with his friends said, "I used to do everything."

The micro level good news here is that he is feeling better and acting happier. Obviously the main goal is the macro one of ridding his body of this horrible disease, but our day to day focus is just to try and comfort him and make him happy and doing normal things. There are big wins when he is acting better as he has the last couple of days. Hopefully next week we will get good news that there are signs that he is reacting well to treatment.

Probably won't be too many updates for the weekend. No clinics, no tests, and hopefully no hospitals.

Wednesday, April 23, 2003

Wednesday, April 23, 2003 9:45 PM CDT

Susan here...

Today Nathan went to the clinic. His blood counts are still not up much. He still has no immunity right now. We were pretty disappointed because we are ready for him to feel better. He did have a bit more active day today and was pretty interactive with us. Tomorrow he will get platelets. They would have liked to do them this afternoon but we feel that one trip to the clinic a day is more than enough for him. Platelets only take about a half hour to infuse so he won't be there for too long. He gained another 1/2 pound on the TPN and is back around 30 pounds.

Many of you are asking about blood donation. It is not possible for anyone out of town to be a direct donor to Nathan. We had the opportunity to donate to him directly but with the amount of blood he is using we decided not to bother. So basically we just ask that if you desire, you donate blood in your community knowing it may help some other child in need. Those of you who live in Colorado Springs can go to Memorial Hospital and tell then you are donating blood in Nathan's name and I believe they make note of it and send us a card or something. Thank you all so much for your generous offers in this matter. The blood he is getting is making him able to fight this disease.

Nathan helped me make oatmeal cookies today. Cooking is the one activity that he really gets excited to do and he jumps right off the couch and walks into the kitchen. He still isn't eating but he was anxious to give a cookie to Julia to eat as soon as they were ready. Even making toast excites him so we are trying to let him do as much of that sort of thing as he wants. It will be even better when he is eating, but maybe he won't be as fascinated with cooking then.

Tuesday, April 22, 2003

Tuesday, April 22, 2003 7:58 AM CDT

Susan here...

Nathan had an OK day yesterday. We got to stay home until 2:30 when we had to go for a check-up at the clinic. That was nice for a change. He had his blood drawn and we were disappointed to find that his blood counts have not yet rebounded. I am really wanting to get him out of the house and visit with his friends because he is so down.

We got the results back from his MIBG scan over the phone. No big surprises as to where the cancer is located (tumor in abdomen, and spread to the bones of the face, pelvis, upper legs, lower legs, upper arms). There is some in his upper arm bones which we did not expect but there was only the one tumor in his abdomen. We already knew the cancer was widespread but it is still hard to hear the cold hard facts. We will get the written report when we go back to the clinic on Wednesday.

So today we will just hang around the house and I will try to get him to play or do something. He really just wants to sit and watch TV and will not walk or stand.

Sunday, April 20, 2003

Sunday, April 20, 2003 7:55 PM CDT

Susan here...

Nathan is Home! He came home around 5:00 today. His temperature stayed down and blood cultures were negative and so he got to come home. He will still be on the supplemental nutrition (TPN) as well as an antibiotic, antifungal, and a few other medications. He is still refusing to eat or drink due to mouth pain. The doctors hope that will be better by Wednesday. Unfortunately Nathan has a long memory and will probably refuse to eat even after his mouth has healed until we can convince him to try again.

His blood counts are just on their way up. He will get more blood drawn tomorrow at the clinic and hopefully they will have gotten even better. He had to have a blood transfusion today. He has had five of them in 16 days! Those of you wanting to do something for Nathan but are so far away can consider donating blood. I can't tell you are much we appreciate blood donors right now!

Well - time to start getting meds ready for Nathan before bed. He is getting bad about oral medications. He used to love them.

4/18/03

Friday, April 18, 2003 8:49 PM CDT

 

Susan writing....

Tonight Luke is at the hospital with Nathan. He has had a rough day. He is very sad to be at the hospital. He is also in pain because of his mouth sores. He is on morphine as needed for the pain and is refusing to eat or drink as well. He has been on IV fluids all day and will be receiving supplemental nutrition tonight. He had a blood transfusion today as well as antibiotics. The doctors don't think his mouth looks all that bad so I can't imagine how he will feel when it gets even worse.

 

At the earliest he will go home Sunday. He needs to be without fever for 24 hours and have his pain under control. His white blood cell counts should go back up soon. The doctors say maybe Monday - I am hoping for a little sooner so he can heal a little and feel better. We feel so awful as he sits in his hospital bed and throws a fit beause he just wants to go home. It is hard to believe we have only barely started this journey because we have heard how much harder it will get and it is already so very difficult. We will all feel better once we get him home.

 

4/17/03 2

Thursday, April 17, 2003 9:34 PM CDT

 

Luke writing again. Second entry of the day, so if you missed the first one you may want to check the archive.

 

I'm writing in because Susan can't. She is on the way to the hospital with Nathan. He is neutropenic (depressed and virtually non-existant immune system) and his temp had been hanging around 99 or 100 for a couple of days but it jumped above the magic number tonight. Any temp 101.5 or above while he is neutropenic will land him in the hospital for probably 3 days. They will want to watch him closely and get a 3 day blood culture so they can make sure he doesn't have a bacterial infection running wild. I'm not sure if he will go straight on antibiotics. He has been taking some orally this week. We feel really bad for the little guy, but he wasn't upset about going. As Susan carried him to the car I heard him say, "Do I get to drive in the dark?". Susan called from the road and said he was happy and telling her all about all of the things that happen at the hospital.

 

Mom and Dad, I know you will feel guilty and bad about leaving today and then this happening. Don't. We were holding out hope this wouldn't land him in the hospital and we have plenty of help with Julia already lined up. The support from friends and neighbors here has been outstanding and everything will be fine. Susan and I will be alternating nights this week.

 

Ugh.

 

4/17/03 1

Thursday, April 17, 2003 4:38 PM CDT

 

Luke writing in today...Yesterday was kind of a rough day. Nothing major really, Nathan was just tired and cranky and I may have been near the end of my rope. We didn't have Nathan at the clinic yesterday, but we did have to take him to the outpatient center to get injected with a radioactive isotope that gets picked up on the study he had today (but that is getting a little bit ahead). When getting the isotope, he had to have an IV placed because the isotope could have clogged up the tubes on his broviak. He was great about it and rather cheery the whole time there. He did start to complain about some mouth pain which likely means he is developing mouth sores. This is common when his immune system is down as it still is and can be problematic as those sores can become good sources for infection. So far they don't seem too bad. He also started complaining about some hip and leg pain again yesterday which is disappointing because we were hoping to be done with that.

 

Today he was in for an MIBG scan. This is a nuclear medicine exam and the purpose in Nathan's case is basically twofold. The study is very good at picking up neuroblastoma so it is a good way to see where exactly in his body and bones the cancer exists. It is possible we will learn something new from the test, but it is more likely that it is a good baselining tool to know where to look for cancer as he responds to treatment and the doctors attempt to determine when/if the treatments have gotten rid of the cancer. Nathan was sedated for the scan. We insisted on this. He has freaked in the past during tests that things moved closely over him. He was very groggy after the sedation which made for a fun trip to the clinic after the scan. He had blood drawn and got his daily neupogen dose. His counts are still very low (.1 WBC). His platelets were okay but his red blood cells were creeping pretty low again, so we will be in for another transfusion tomorrow morning.

 

It is very had to see him suffer and he is pretty beat up right now. Since we took him to the hospital on March 31 we have been in the hospital, at the clinic, or at the outpatient center for the hospital every day but saturday and sunday of last weekend. The chemo didn't make him all that ill, but now as his system is crashing he is feeling and looking pretty low. Now it is hurting him to eat and drink. We are looking forward to the upswing which will hopefully start soon.

 

As I write this Nathan is fussing, yelling, and in general being very rude. Through all of this though, he has let his sweet side shine through. Examples:

 

In the hospital several times after someone was in the room to take care of him he would say, "Oh, Mommy (or Daddy), the doctor/nurse/teacher make me feel better."

 

In the hospital one of the best nurses you could possibly imagine who was great at settling him into bed comfortably so he could sleep after his surgery kissed him on the head. He said, "Oh, Daddy. The nurse loves me."

 

In the middle of the night after chemo when he had a stomach bug and I was changing his sheets and diaper after laying him on the floor by the bed, "Daddy, you're the best. You're a big helper."

 

One morning after waking up and noticing his broviak while we were changing his morning diaper, "Julia doesn't have tubes."

 

He is going through a lot, but he reminds us frequently that he is still our sweet, wonderful boy.

 

I'm not sure what next week brings us. Tomorrow is another transfusion and we hope that his fever (he has been running a minor temp) doesn't spike. If it hits 101.5 while he is neutropenic it will buy us 3 days in the hospital. I'm hoping next week isn't 5 days in the clinic or hospital, but we shall see.

 

4/15/03

Tuesday, April 15, 2003 5:24 PM CDT

 

Hi - Susan writing this....

Nathan had his transfusion, red blood cells and platelets today. It was almost 5 hours at the clinic. It makes for a long day. Since he got back from the hospital we have been at the clinic every day except the weekend. Tomorrow he won't go to the clinic but will be injected with radiactive dye for his MIBG scan that he will have Thursday morning. They will have to inject the dye through an IV - so that will be hard for Nathan.

 

We are having trouble getting Nathan to drink enough. Bribing him isn't even working. He has also lost some weight and is about 30.5 lbs and about 40 inches tall...very skinny.

 

Nathan has had a cough for a few days. He is on antibiotics to ward off an infection. If he has a fever of 101.5 or more while he is neutropenic (white blood cells less that 500) it is an automatic 3 day stay in the hospital. This will most likely happen a few times during chemo but we are really hoping it won't happen this first time. He does so much better at home and having him in the hospital would set him back mentally I think.

 

He is helping his Grandma Kathy bake muffins right now and is walking around...so that is great.

 

4/14/03

Monday, April 14, 2003 9:19 PM CDT

 

Luke writing today. We had Nathan in to the clinic today. He was in for an exam and bloodwork to follow-up on his three days of treatments that ended Friday. He was also getting neupogen (sp?) which is a hormone to get his body producing white blood cells. His blood counts showed that he is already neutropenic (his immune system is shot from the chemotherapy). He got to this point faster than we expected, but that didn't seem to be a big concern to the doctors. It is likely that he hit this low point early because his marrow is so infiltrated by the cancer that there aren't as many good cells there to produce and maintain his blood counts. He is also anemic and his platelets are low. Tomorrow will be a transfusion of red blood cells and platelets.

 

His spirits were pretty good today. We still need to coax him to walk. There is still some fear, but we think he is still used to and liking being carried around. He smiled a lot and played some, so that was good.

April 13, 2003

  Sunday, April 13, 2003 10:42 AM CDT

 

This is the first journal entry and so I will attempt to catch us to today.

 

On March 31 we took Nathan to the pediatrician to follow up several weeks of intermittant fever and 3 days of limping and refusing to walk. He referred us to a pediatric orthopedist suspecting a hip infection. She sent us to the hospital for an MRI of Nate's hip. The MRI showed some shadows on both hips. On April first he had a bone scan which showed a tumor on his kidney. The orthopedist told us it was most likely neuroblastoma.

 

On April 3 Nathan underwent surgery to have a Broviak placed (tube in his chest to deliver IV meds and make blood draws). He also has some of his tumor resected for biopsy and bone marrow taken from both hips.

 

April 4 Nathan had a blood transfusion since he was anemic.

 

On April 5 we were told the bone marrow was "heavily involved" which we were expecting. We were also told that the tumor was so necrotic (dead) that the biopsy was going to be very difficult.

 

On April 6 Nathan got to come home from the hospital. He was initially fearful or returning home because he thought he would hurt again at home (he was having bone pain from the affected bone) Once he got in the car and got home he was very happy.

 

April 7 Nathan went to the clinic for the first time and had blood drawn.

 

April 8 Nathan had a blood transfusion. We were still waiting for test results to confirm the neuroblastoma diagnosis since the tumor sample was no good. We finally got the diagnosis that afternoon from the tumor in the bone marrow.

 

April 9 was the first day of chemo. Nathan got the room with a bed and so napped some which was a good thing. We had some good news when the test results of his n-myc amplification came back at 1 which was essantially non-amplified. This is a prognostic indicator that helped to increase his chances for recovery. His age (over 1) and stage (stage IV metasticized neuroblastoma) and more critical factors, but at least he doesn't have the n-myc amplification as well. That evening Nathan was sick all night but we actually think it was the stomach bug his sister Julia had.

 

April 10 and 11 were two more days of chemo. Nathan handled the chemo fairly well. He had some tantrums (since he is 2 after all) but was very good.

 

April 12 was our first day home since the hospital that we didn't have to go to the clinic. We had to bribe Nathan to walk - the doctors tell us his bone pain should be gone but he was too afraid to walk. AFter we convinced him to walk he walked around some - that was good to see. I also took Nathan to get his hair buzzed to make the impending hair loss less traumatic for him and also for me!

 

Today is April 13. Nathan is refusing to walk again today. We will try to bribe him to walk later. He is asking for a nap so that is next on the agenda. Tomorrow he will gop to the clinic for his first dose of Nupigen - which will help to stimulate his bone marrow to produce white blood cells.