What is remission?

To most of us lay people, remission means no more cancer. But, just so you know, that is not always the case with the medical community. In our case, it means that less than five percent of the cells in James' bone marrow are cancer cells.

That will be a happy announcement to make. Especially since just last Wednesday, 90-some percent of James' bone marrow cells were cancer.

However, it doesn't mean the fight is over. Just that the battle is going in our favor!

A hard day, but not a bad day

Wednesday night, we gave James some GoLYTLELY through his feeding tube to help clean out his intestines which aren't working much due to the ileus. Interestingly, it's the same stuff given to folks to drink the night before a colonoscopy. Of course, James was to get much less! Early Thurdsay morning, it became apparent that the bed actually soaked up more of James' GoLYTELY than James did. Most of it leaked out the little medicine port in his feeding tube. His G-tube secretions had actually gotten worse. On top of all that, James already had a big day scheduled with a bone marrow biopsy, spinal tap and at least one chemo treatment, if not two.

It was too aggravating for James for me to be within sight, since he was so hungry and wanted so badly to nurse. Hannah was a wonderful big sister, doing her best to comfort James before the big event. Cori, the child life specialist taught Hannah some tricks with a "distraction kit". Bubbles were the biggest hit with James.

I stood around a corner, out of sight, watching James by using the digital camera--the staff got a kick out of that. I got some pictures. I decided that I wasn't going to let it get me that I couldn't comfort him, knowing I would be a better comforter after it was all over.

Now I've never been great with blood, or needles either for that matter. This procedure involved both. It was interesting. To Vern, it would have been fascinating (except for the fact that it was his little boy). But I couldn't make it through the whole thing, even though I was actually on the easier-to-view side. Hannah was watching the procedure side and I was amazed she lasted as long as she did. Even though James was sedated, he would occasionally cry out or wince and we were assured that when they do this same procedure on older children, they always tell the doctors and nurses they don't remember what happened nor do they remember any pain. Of course, gathering bone marrow and spinal fluid involves some serious poking and that was hard to watch for me. Once they were done with the procedure, someone came to get us and we were able to be there with James as he woke up. He had some growls for us and, later, some sweet kisses.

The rest of the day was very appropriate for the cloudy weather outside. There was lots of snuggling and nursing and just being glad to be together.

Today, we await the results of the bone marrow biopsy. In the meantime, James got another dose of GoLYTLEY last night, which seems to have hit it's target. His bowels are active again and we are introducing food. A hungry little James is certainly happy about this turn of events.

Your notes and comments are a blessing and encouragement to us... thanks for taking the time to comment.

Love, Stephanie

Eating out with Momma

Wednesday, Momma and I ate at the Garden Cafe which is in the hospital. We both had taco salads, which were extremely good. However, you shouldn't put both packets of taco sauce on the salads and you might want to skip the three BIG rings of red onions.

It was nice to leave the floor, (should I mention that it is only the second timeI've left the floor since I came here Sunday. The first time was earlier today when James had a CT Scan.) Leaving the floor comes to mean alot when we don't want to and James doesn't want us to leave him by himself. But with James sleeping (another one of those the drug-induced sleeps) and his nurse peeking in on him, it's easier to leave the floor or the room when someone is peeking in on him and he's sleeping.

Anyway, back to the Garden Cafe. we left here around 4p.m. because we needed to find something to have for supper and Momma wanted to try Garden Cafe! We were really pleased with the taco salads, I just have to remember not to put the two packs of taco sauce on my salad and to not eat the red onion. Unless I want drink alot of water:*).

Love, Hannah

Did you know?

The reason people on chemotherapy lose their hair is because chemo attacks quickly dividing cells and hair follicles are quickly dividing cells.

Yesterday, today, and the MRI results

Yesterday was kind of a tough day for James. Sometime in the morning, he started itching around his central line and ended up pulling a stitch loose causing some nasty looking bleeding (honestly there isn't too much bleeding that isn't nasty looking in my book, but there is something really nasty about bleeding on the chest near the sight of a tube that goes through my two-year-old's chest and into his heart, if you know what I mean!! :*)). It took a while to figure out that it was the pulled stitch that was bleeding, but it was a relief to figure out the cause. I suppose it is one of those things that it is better to have happen in the hospital for the first time, rather than at home!

James also has been leaking some unusual things from his g-tube. At first, it was easy to dismiss it as 'all those medications he has been taking'. Yesterday, we got beyond just saying that and want to know for sure. His doctor thinks it is ileus, which I understand is an irritation of the stomach and intestinal lining (feel free to help me out here), caused, in James' case by 'all those medications he has been taking', plus the chemotherapy. I think the hardest part of this journey for me is going to me seeing things that don't seem right, but not being able to 'put my finger on it' so we can help James get comfortable again... Once we get to where we are at least asking the right question and providing some level of comfort for James, things begin to fall into place. All this is important in being able to advocate for our children with special needs and illnesses, and I can see where some parents could easily fall apart here.

In addition to the bleeding and g-tube issues, James has just been really irritable. It has been a real challenge to read his pain cues. To state the obvious, this is so much different than his previous surgeries! His pain now is more intermittent and sometimes it is hard to discern when he needs pain relief. Please pray for me that I would be wise and quick to discern James' need for comfort. Some of James' discomfort may have come from him being desperate for a bath. James normally loves baths, but by the time we got him his last night, he was a tired, miserable, uncomfortable, cranky and cantankerous little guy.

This morning we woke up with a new lease on life--joy in the morning--and reinforcements in terms of helping resolve some of James' challenges. Today, James saw the physical and occupational therapists who brought us things we can play with James and a mat we can use to let James play on the floor with. We also had a visit from a nurse wound specialist, who gave us some tips regarding stoma/g-tube care. The child-life specialist came by to introduce herself and find out how she could help. She returned with a laptop that we are hoping will allow us to post photos on the blog--don't get your hopes up too high just yet, though, I have some technical hurdles to overcome first!

We also learned that because of the ileus, we will likely remain in the hospital for another week and we are currently hoping to return home next Friday. Tonight James is getting a unit of blood and another of platelets. Tomorrow is big day for James as he will have a bone marrow aspiration, spinal tap and two chemo treatments. Please pray that they would be effective for James, but not cause side effects.

My mom reminded me that I never really got back to the results of James' MRI from last week. The MRI itself looked good, but we were actually waiting for the call from the oncologist as to how she was going to call it. When the family came down on Sunday, they brought our new digital camera which has some pictures of James with his Bell's Palsy. Dr. Wiermaa was happy to look at the videos which provided as much or more evidence and confirmation that the Bell's Palsy and the Leukemia are unrelated. So, that is Dr. Wiermaa's call and we are glad.

Advocating, today's agenda and the folks at home

The last three or four days have pretty much been a time of waiting. Three of those days have been relatively easy. One thing I wanted to mention is how important it is for parents of children with special needs and/or serious illness to advocate for their children. By advocate I mean that we need to be aware of our children, their needs and their treatment so that we can speak for them and protect them from unnecessary things. Let me share an example:

In the few days since we have been here, I have quizzed every person who has come to visit James. I have shared with them as much as I can about him and our family, our concerns and our situation so that they know where we are coming from. They also know from the questions that I ask (nothing deep, I assure you), that I am genuinely concerned about and interested in my child's care and those that are providing that care. On two different occasions, I have had nurses come to say they needed additional blood for tests that needed to be redone or that the lab claimed was never received. Both times, I either witnessed the blood draw and asked the nurse what she was drawing the blood for, or I knew (from asking the nurse) that the results for those tests had been received. I refused the blood draw for James--a perfectly acceptable thing to do--and said that if the lab offered a better reason for needing more blood from James, I would be happy to cooperate. Both times, the nurse returned and said they 'found' the blood or the results and no blood was needed. Now, some would say 'what's the big deal'. I'll tell you. James is pretty small--at almost 27 months he weighs about 25 lbs, with steroids. Because of his leukemia and chemotherapy, his body is no longer making blood. When he needs blood, he gets a transfusion. The fewer interventions James needs during this time, the better. We'd rather focus on what he does need.

Now, I'm not encouraging parents to be obnoxious with their child's medical care providers just because they are the parents. I am advocating getting involved, knowing those working with your child, knowing what they are doing with your child and asking questions when things don't make sense. I have not always been comfortable with this role, but I can look back and see how the Lord has suited me to meet this very need for James. And I hope others will benefit. The medical folks working with James have always indicated that it thrills them to have parents get involved, to care, to learn, to express concerns and ask questions.

To the person, they tell me they wish more parents would do this. Everyone would benefit.

Today we are anticipating James getting his next chemo treatment. We're not sure exactly when, but it is a shot (or two) into his thigh muscles. He'll need to be monitored for a while after the injections.

At this point, our biggest challenge is boredom. Dr. Wiermaa and I talked about that yesterday and she ordered physical therapy and occupational therapy visits for James today. She said they would bring mat that can go on the floor for him to play on that we can pick up and keep clean, so he has a safe place to play.

I talked to the home folks this morning and packing is progressing along. There is much to be done. Many friends have brought meals and more folks are calling to schedule bringing food. Everyone is eating well and not having to prepare food has free Katie to work on sorting and packing. She and I have spent a good bit of time 'sorting by phone'. Vern told me that the cabin offered by friends for us to stay in after our house closes won't be usable because the septic tank and leech field are frozen. John and Jeanne, our realtor friends are looking for alternatives for us this morning.

Please pray:

1. For wisdom for James' doctors and staff and Mommy Advocate to help James get the best possible care and the best possible outcome from his treatment.

2. That James would respond well to today's chemo treatment and not have any side effects and that therapy would be a good and helpful thing for him.

3. For the folks at home: for good rest, that they would be able to accomplish much towards moving and yet not feel overwhelmed with the size of the task, that the little ones would play sweetly and be helpful to the big ones that are working.

4. That God would keep us all healthy and continue to protect James.

Back to James.. I hope to have more later today. Thanks for visiting... and especially for praying.

Love, Stephanie

The road map

At this point, we have a fairly good idea of what to expect regarding the chemotherapy part of James' treatment schedule for this month. I'll go ahead and just list back from the 28th of February through the end of March as things are currently scheduled. Please note that things like infections, reactions, blood and platelet transfusions are not scheduled but do occur.

Wed, Feb 28--arrive at Cancer Clinic
Thurs, Mar 1--Surgery, install central line (Hickman), bone marrow aspiration, bone biopsy, spinal tap, chemo in spinal fluid (don't have the name handy); begin dexamethasone (steroid, which will run for 28 days then taper off) First dose of vincristine (a very potent chemo drug).
Fri, Mar 2-Mon, Mar 5--remain at hospital, continue all other meds.
Tues, Mar 6--Asparaginase, intra-muscular chemo treatment
Wed, Mar 7--remain at hospital, continue all other meds.
Thursday, Mar 8--Bone marrow aspiration, bone biopsy, spinal tap, chemo in spinal fluid. This is a very important day for James. The hope is that he will be declared in remission. If he is, his prognosis is very good. If not, we'll have to do the bone marrow aspiration and bone biopsy again in a week. James will also get his second dose of vincristine.
Fri, Mar 9- Thurs/Fri, Mar 15/16--Lord willing and all goes well, we'll go home for a while. There is a great possibility that James' numbers will drop, he will get a fever and we will end up back in the hospital for antibiotics.
Thurs/Fri, Mar 15/16--Depending on the results from last weeks bone marrow test, it may need to be done again this week. Otherwise, we would return to the hospital for James' third vincristine dose. Lord willing, we'll return home on the same day. Depending on how he handles this treatment, we may need to remain overnight.
Sat, Mar 17-Thurs Mar 22/Fri Mar 23--Lord willing and all goes well, we'll go home for a while. Again, there is a great possibility that James' numbers will drop, he will get a fever and we will end up back in the hospital for antibiotics.
Thurs Mar 22/Fri Mar 23--Return to the hospital for vincristine dose. (Close on the house Mar 23rd)
Fri/Sat, Mar 23, 24--Thurs/Fri, Mar 29, 30--Lord willing and all goes well, we'll go home for a while. Yet again, there is a great possibility that James' numbers will drop, he will get a fever and we will end up back in the hospital for antibiotics.
Thurs/Fri, Mar 29/30--Return to the hospital for vincristine dose. Have bone marrow aspiration and bone biopsy and spinal tap.

At the end of the month, all the results of James' treatments so far will be submitted to the Children's Oncology Group (COG) and they will determine which specific track of treatment he will follow (at least that is how I understand it).

The treatment will last for another eight months and then, if all goes well, James will move into the maintenance phase where he will probably have maintenance treatment for another 29 months for a total of 3 years, 2 months.

So, this is a start and it is all subject to change depending on how James responds to therapy and how healthy he is able to stay during treatment.

Stephanie

Prayer requests

Some of you have asked for specific prayer requests. I will always try to include some in posts as we learn more about specific things going on with James. But I do have some specific overall requests from James oncologist that I'd like to ask you to pray for.

The first thing she asked for prayer about was 'wisdom for the doctor and the staff!' I really appreciate that. As a believer, it is something that's very important to her.

As far as James specific prayer needs, she suggested asking folks to pray that:

1. His blood sugar would stay in line--sometimes children with cancer are processing so much waste, in terms of dead cancer cells, the body has a hard time keeping up with other functions. When this happens, sometimes blood sugar gets out of hand and the child needs insulin in addition to everything else.

2. James would have no serious bleeding-- with platelets dropping low sometimes bleeds can be a challenge. A child on chemotherapy shouldn't have things like enemas or rectal temps, which could result in serious bleeding. But bleeds can come from other places too, like the nose.

3. James would have NO infection--this is a biggie. Risk of infection during chemo is high as the same treatment that kills the chemo also reduces the body's ability to fight off infection. Additionally, the steroids compromise the immune system. The biggest risk is during the first month (essentially all of March), but will remain throughout treatment. James is at a slightly higher risk of infection because of his Down syndrome.

4. James would not have trouble with Tumor Lysis Syndrome-- This is one spot where I'd be thrilled to have someone who knows weigh in, because my knowledge is old and limited. This is my understanding and remembrance. Lysis means burst. Chemo destroys tumors by bursting them. Burst tumors become waste in the body and must somehow be eliminated--through stool and urine. Sometimes the bursting tumors overload the kidneys and dialysis becomes necessary. If I remember correctly, kidney damage can be permanent, though it doesn't usually require continued dialysis.

These are specific things that can affect James during the whole process. As I mentioned earlier, I will share many more specific requests as we move through this. So far, the Lord has been very merciful to us... and to James especially.

I am hoping to do some other posts soon... specifically regarding James chemotherapy road map (of which we only have a small part at present) and 'the numbers'... some of the key blood test results that we watch (the oncologist, of course, watches many more!) and see how James is progressing.

Love, Stephanie

Posts, Comments, E-mail

I sure appreciate all of you who read here and keep James in your thoughts and prayers. I'm sorry for such a long post yesterday to catch up on the weekend. Though I hope to do better, I can't make an promises ;*)..

If you want to contact me, or ask any questions about James or whatever, the best way to do that is to click on 'comments' at the end of any handy post. Your comment comes to me as sort of an e-mail. I get the comments every time I sign on to post, at a minimum. Nothing is posted as a comment until I read it and 'approve' it. Which doesn't mean that I hide comments (though I will always reserve the right to!!), but it means that if you just want me to read your note and you don't want me to post it for public viewing, I can do that--just let me know. At this point, it is hard for me to get to e-mail much, so the blog is working as a better mass communications tool for me.

If you need to contact the folks at home, just e-mail them at our regular e-mail address.

If you have any questions, please leave a comment! If you have medical expertise (M.D., R.N., parent of a child with cancer... etc.) and I'm not getting the facts right or they need some clarification, please feel free to comment with better info.

Stephanie

A very good weekend

James has had two very good days and we are very, very grateful. Somehow the weekend just filled itself up with good things and I didn't have much opportunity get on the computer.

Saturday morning, Dr. Wiermaa came in to check on him. When she asked how he had done Friday, I told her about the diarrhea and how he had such a hard miserable time in the afternoon. I described his behavior as being 'like an angry violent teen-age boy in a tiny little boy's body". She just turned to me and said, "Steroids." Then she went on to explain how steroids can sometimes change personalities. She did say that it doesn't last, but that sometimes it can by very hard in the midst of it. She also said that people on steroids tend to need less sleep and that, at some point, they also have an increased appetite (we haven't seen this one yet!). In addition to this, James' discomfort from other aspects of his treatment could make the personality change bigger than it would otherwise be. That seems to explain what happened to James on Friday--the discomfort from all the treatment issues, especially stomach-cramping with diarrhea, pushed him beyond his pain limits and instead of being weepy and crying, like he has in the past when he was in pain, he got angry and aggressive. Please continue to pray for us to have wisdom to help James stay comfortable. Your prayers this weekend sure seem to have made a big difference and we are learning a lot about how we can help him over the coming weeks and months--we just need what we've learned (and more) to come to mind when we need it!

By Saturday, the area seemed to be pretty well dug out from the storm (although there are still HUGE mounds of snow pushed off to the sides of roads and sidewalks). James was taking a good afternoon nap and Owen and went for a walk OUTSIDE!!! in the SUNSHINE!!! We went about three blocks to a nearby Whole Foods Co-op where we picked up a sandwich and some salad bar stuff to share for lunch.

After a late lunch, we moved from the PICU to the regular pediatric floor. They actually have designated "chemo" rooms which have some special features, like private bathrooms. In our room, James has a hospital crib (sometimes we call it the baby jail, because it has a top and the sides can go all the way up to keep him safe inside), I have a regular hospital bed which is very multi purpose (of course I can sleep on it flat--it is actually quite comfortable-- and we can prop it up part way (great for snuggling James when he is needy) or all the way when we pile in to watch TV. Owen also raised the bed to full height for a better view looking out the window!

When we were moved to our new room, James and I went in style, riding in the hospital bed!!! Owen was going to take a picture of us coming around the corner, but he decided it would be more fun to follow along and count points for the nurses for each time they bumped in to something with the bed! By the time we got to our new room, we were joking with the nurses, asking if this was St. ****'s Spa and ChemoTherapy :*). I'd rather laugh at the days to come than fear them.

Once James was settled in for the night and Owen and I had arranged everything we could, we snuggled on the multi-purpose hospital bed and watched an old Erol Flynn WWII flick. We called it 'history' (note to self: check to see if it was based on a true story).

Saturday night wasn't quite as easy as Friday night. It certainly wasn't bad. James woke up a few times, just needing Momma and that was okay. The third time (of three) we sat in the rocker in our new room, opened the drapes and really watched the sun rise over Lake Superior! Beautiful! Then we thanked God for the clouds as the sun rose a little higher and the daylight dimmed a little, closed the drapes and climbed back in to bed!

One of the times I was up with James, his nurse came in to let me know that his lab results had come back and his White Blood Count was below 2 and we had to treat James extra carefully because he is now at greater risk for infection. People coming in to his room need to take extra precautions if they have or have been exposed to illness. We need to keep his door closed. The air system in his room has been switched to positive pressure so that the air flows pushes out most of the bad germs. And we need to be careful about what comes in to his room.

Sunday morning was a little slow going, simply because of the late night (due to the history lesson) and three times up with James. We almost got going in time for the family to arrive. The whole gang came together and I think the nurses were a little concerned with how full James' room became!

We had a wonderful time together and some of us picnicked on a sloppy joe feast provided by a special friend. We shared stories and food and just enjoyed being together. Back in James' room (he couldn't leave, so Hannah stayed with him), we sang some hymns together and James clapped along with the appropriate songs. It was a special treat to see him enjoy the music he has likely been missing very much.

After a little more close family time, Vern headed out with most of the children--leaving Hannah behind to help this week. On the way down with the children and some of the things we were sending home, we ran into other special friends who were coming to visit! They brought sweet encouragement and fresh fruit and apple juice!

Once we got all settled again, Hannah and I put together a little CD player for James, since we now had batteries to run it. Now that the music is playing, James is having a great time in his crib listening to it! We also enjoyed some delicious broccoli cheese soup from yet another friend.

We have so much to be thankful for!!

Love, Stephanie

Last night

We all slept really well last night. We kept James' morphine up through the night and switched him back over to tylenol with codeine this morning in the hopes that we have the pain under some control. So far he seems to be doing really well. He woke up and wanted to nurse and actually did great...definitely the best nursing he's done since he started chemo. Then he ate about 2 ounces of yogurt and we mixed some more into some milk and gave that to him through his tube. He was also about to tolerate a whole normal night tube feeding (400ml). He is now sleeping comfortably in his crib.

I've been watching sunrise over Lake Superior which has been a special treat. Now I'm off to enjoy some quiet time. Thank you so much for praying.

Love, Stephanie

Last night was piece of cake...

compared to this afternoon. James was having a really hard time. His nurse, Apryl, thinks the antibiotic he is taking for the fever is causing serious diarrhea which may be causing his tummy to cramp and making him very uncomfortable. We tried giving him some relief with Tylenol with codeine and that didn't do much. So we went with the morphine. He finally went limp and fell asleep at the same time someone from the kitchen came by with a spare dinner tray to offer.

Owen and I are taking a little break in the family lounge, sharing dinner. Neither of us are particularly hungry tonight.

Please pray for wisdom to help James stay comfortable and for his comfort in general. Also pray for some good sleep tonight all the way around and for protection against illness for the whole bunch of us--especially James. I hope to have some more specific prayer requests tomorrow. James' oncologist is a believer and she gave me a list of things she would like me to ask folks to pray for, so I will share that too.

I won't be able to post any photos before Monday for sure and may not be able to then.

Love, Stephanie