James is quite the popular little guy in the pediatric oncology community these days. There has been a good bit of discussion about his situation and his recommended treatment between the folks here, in Minnesota and at the Children's Oncology Group (COG). The doctors who managed his care in Minnesota have weighed in with a "Minnesota Position". Essentially, what they would recommend for James' care if he were still in Minnesota. Then there was a big discussion about what the COG recommended. Dr. Keller said, "The e-mails were flying." Pretty much all weekend.
It seems there is a good bit of consensus now. My understanding is that Dr. Keller hopes to use an older protocol from the late 1990s-early 2000s. It uses drugs that aren't quite so potent as the vincristine against the intestinal tract. Initially, there was some discussion about James potentially needing radiation to the brain in addition to his chemotherapy. Considering James' age and Down syndrome, all involved agree that the risks of this are far greater than the potential benefits. Instead, James will get extra treatments of methotrexate, which is known for its ability to attack leukemia cells in the central nervous system.
As of yesterday, Dr. Keller was waiting to hear from the doctor who directed the studies on the protocols in question to see if there was anything she knew of that might contraindicate using this protocol for James. At this point, all are primarily concerned with giving James' body a chance to heal.
The surgeon who placed James tube came by today to talk about establishing a protocol to help protect James from future outbreaks of enterocolitis during the rest of his chemotherapy. It seems reasonable enough and includes a couple of things to do before each round of chemo, both of which can likely be done at home.
Please continue to pray for wisdom for James' doctors and their 'counselors' as they come up with a plan for James.
Love, Stephanie
Tuesday, April 10, 2007
Answers
With James' potassium back on track and ruling out the teflitis yesterday, the GI team got involved again and they brought the surgical folks with them. They all came by to see James and ask me some questions about James' history. The information they gathered comfirmed their suspicions that James' problems are caused by enterocolitis, which is very common in children who have had Hirschsprung's disease.
Enterocolitis is essentially an inflammation of the lining of the bowel that causes the sphincter muscle to tighten up, retaining stool in the colon, destroying the lining and allowing infection to fester and attack the colon walls. If left untreated the results can be devastating--the colon can burst causing all this infectious fluid to spread throughout James' little body. If he survived that, clean up would surely be an incredible challenge. Somehow, no one is exactly sure how, a history of Hirschsprung's disease seems to predispose many children to enterocolitis. In other words, some of this is just in James' genes, although, it is likely brought about by the chemotherapy and it will be something we will have to work to protect him from during the course of treatment . For as long as this has been going on, it is likely another miracle that James has not yet had any more systemic infections.
Last night, James had a rectal tube placed to decompress his colon. So far he has drained about 750 ccs (about 25 ounces). Right after placement, he had an x-ray to be sure the tube is where it belongs. This morning, he had another which shows things have improved significantly. The hope is that over the next day, he will decompress enough that the tube can be removed. In other children (not on chemotherapy), they might also run a flush through the tube (either sterile water or saline, I can't remember which) to help clean things out. But there is some concern about doing that with James and the surgeons are hopeful that drainage will be sufficient.
Dr. Briones, the attending oncologist, was pretty nervous about the whole thing. He called last night to check on James and he is anxious to have the whole procedure completed. This morning he was wondering how long the whole process would take. He even said we really need to pray that James doesn't get an infection from this.
So, please keep praying with us that the infection James has (actually it's an inflammation of the lining of the colon) will clear completely and that he will be protected from further infection. We are thankful that this whole thing seems to have been contained so well--a miracle in itself.
Enterocolitis is essentially an inflammation of the lining of the bowel that causes the sphincter muscle to tighten up, retaining stool in the colon, destroying the lining and allowing infection to fester and attack the colon walls. If left untreated the results can be devastating--the colon can burst causing all this infectious fluid to spread throughout James' little body. If he survived that, clean up would surely be an incredible challenge. Somehow, no one is exactly sure how, a history of Hirschsprung's disease seems to predispose many children to enterocolitis. In other words, some of this is just in James' genes, although, it is likely brought about by the chemotherapy and it will be something we will have to work to protect him from during the course of treatment . For as long as this has been going on, it is likely another miracle that James has not yet had any more systemic infections.
Last night, James had a rectal tube placed to decompress his colon. So far he has drained about 750 ccs (about 25 ounces). Right after placement, he had an x-ray to be sure the tube is where it belongs. This morning, he had another which shows things have improved significantly. The hope is that over the next day, he will decompress enough that the tube can be removed. In other children (not on chemotherapy), they might also run a flush through the tube (either sterile water or saline, I can't remember which) to help clean things out. But there is some concern about doing that with James and the surgeons are hopeful that drainage will be sufficient.
Dr. Briones, the attending oncologist, was pretty nervous about the whole thing. He called last night to check on James and he is anxious to have the whole procedure completed. This morning he was wondering how long the whole process would take. He even said we really need to pray that James doesn't get an infection from this.
So, please keep praying with us that the infection James has (actually it's an inflammation of the lining of the colon) will clear completely and that he will be protected from further infection. We are thankful that this whole thing seems to have been contained so well--a miracle in itself.
Sunday, April 8, 2007
Life goes on
Thursday morning, Vern, James and I left bright and early to bring James to meet Dr. Keller and the crew at the AFLAC Cancer Center in Atlanta. We didn't factor in quite enough time for traffic around Atlanta, but that didn't seem to phase anyone.
During our visit, James' blood was drawn and everything looked great, except his potassium. Which was critically low. They determined we needed to admit James to correct this deficiency, which can cause heart arrhythmia and GI problems. The rough guess was that it would take two to three days to correct the problem and make sure it wasn't going to continue to be a problem.
What they didn't take into account was all the mid-course GI issues James was bringing with him from Minneapolis.
This morning, however, it seems we all realized what we were missing and now that James' potassium is looking great, we'll be hanging around for a while to see what we can do about his GI issues.
His belly is very distended (sometimes this can be related to low potassium) and gassy. He isn't passing gas or stool again. Last night we had some significant pain issues and now James is getting morphine again, although there is the usual concern that it could exacerbate the GI issues.
He has also had two fevers this hospital stay and is getting extra antibiotics. We are waiting to hear the results of blood cultures regarding infection and a CT scan regarding his belly. There is some concern that he could have teflitis (an infection of the bowels), though tests seem to be ruling it out. Once it is ruled out, we will move on with the GI doc and his oncologists to help regulate things and find some tolerable way to nourish his little body. In the meantime, he is back on TPN.
It has been very good to be nearer to home. Vern was able to bring the children back up Saturday. (He stayed with us Thursday night and went home Friday afternoon). We had asked about getting a room at the Ronald McDonald house, but there wasn't one available and they weren't big enough for our family. The social worker offered to find us a motel room through another organization's program, we applied and were approved. We were blessed to be provided with lodging for Saturday night and we enjoyed the weekend together as a family.
Katie is staying with me, at least for a time to help and be company.
My folks drove down from north Georgia/NC to see us all--especially James--and my Dad brought his not-very-frequently-used laptop. This is a huge blessing multiplied by the fact that the hospital has WiFi that we are able and welcomed to use. AND it works in James' room.
Please pray that we would have wisdom and find the knowledge we need to make choices regarding James' care and pain management. Pray for his doctors as well for wisdom and for eyes to see James' needs. Vern would like us to pray for wisdom for him to know 'what to do next' as there are many important things vying for his time and attention.
Please continue to pray for protection for James from infection.
With the blessing of the laptop, I hope to catch up on a few things, Lord willing and James tolerating! Thanks for checking up on us, thinking of us and praying for us. As always, we welcome your notes, thoughts and questions through the comments link below.
Love, Stephanie
During our visit, James' blood was drawn and everything looked great, except his potassium. Which was critically low. They determined we needed to admit James to correct this deficiency, which can cause heart arrhythmia and GI problems. The rough guess was that it would take two to three days to correct the problem and make sure it wasn't going to continue to be a problem.
What they didn't take into account was all the mid-course GI issues James was bringing with him from Minneapolis.
This morning, however, it seems we all realized what we were missing and now that James' potassium is looking great, we'll be hanging around for a while to see what we can do about his GI issues.
His belly is very distended (sometimes this can be related to low potassium) and gassy. He isn't passing gas or stool again. Last night we had some significant pain issues and now James is getting morphine again, although there is the usual concern that it could exacerbate the GI issues.
He has also had two fevers this hospital stay and is getting extra antibiotics. We are waiting to hear the results of blood cultures regarding infection and a CT scan regarding his belly. There is some concern that he could have teflitis (an infection of the bowels), though tests seem to be ruling it out. Once it is ruled out, we will move on with the GI doc and his oncologists to help regulate things and find some tolerable way to nourish his little body. In the meantime, he is back on TPN.
It has been very good to be nearer to home. Vern was able to bring the children back up Saturday. (He stayed with us Thursday night and went home Friday afternoon). We had asked about getting a room at the Ronald McDonald house, but there wasn't one available and they weren't big enough for our family. The social worker offered to find us a motel room through another organization's program, we applied and were approved. We were blessed to be provided with lodging for Saturday night and we enjoyed the weekend together as a family.
Katie is staying with me, at least for a time to help and be company.
My folks drove down from north Georgia/NC to see us all--especially James--and my Dad brought his not-very-frequently-used laptop. This is a huge blessing multiplied by the fact that the hospital has WiFi that we are able and welcomed to use. AND it works in James' room.
Please pray that we would have wisdom and find the knowledge we need to make choices regarding James' care and pain management. Pray for his doctors as well for wisdom and for eyes to see James' needs. Vern would like us to pray for wisdom for him to know 'what to do next' as there are many important things vying for his time and attention.
Please continue to pray for protection for James from infection.
With the blessing of the laptop, I hope to catch up on a few things, Lord willing and James tolerating! Thanks for checking up on us, thinking of us and praying for us. As always, we welcome your notes, thoughts and questions through the comments link below.
Love, Stephanie
Wednesday, April 4, 2007
Safe and sound
What an incredible trip we had. Through hail and severe thunderstorms, in traffic jams, and long days. We are so grateful to be all together again. Even though Vern, James and I will travel to Atlanta tomorrow.
We arrived in Milledgeville this afternoon and just spent time together. The children were in with Mrs. Anna (still pronounced missanna :*)) and we 'surprised' them there. We ran a few errands in town and relished being together.
Of course, billions of things went through my mind as we travelled. I did take some pictures that I might try to post another time. But now we are here and together and it is past my bedtime.
I am so thankful to have such a wonderful husband. He drove the whole way back from Minnesota (the fact that he loved driving the car we used did help, I'm sure). James blew out diapers all over the bed each night in the motel room and it was good to have an experienced nursing assistant available.
We are also grateful for all the wonderful thoughts and prayers on our behalf. Thank you (even though it seems so incredibly inadequate.) Tomorrow promises to be a long day. Please keep praying for James and for wisdom for us.
Love, Stephanie
We arrived in Milledgeville this afternoon and just spent time together. The children were in with Mrs. Anna (still pronounced missanna :*)) and we 'surprised' them there. We ran a few errands in town and relished being together.
Of course, billions of things went through my mind as we travelled. I did take some pictures that I might try to post another time. But now we are here and together and it is past my bedtime.
I am so thankful to have such a wonderful husband. He drove the whole way back from Minnesota (the fact that he loved driving the car we used did help, I'm sure). James blew out diapers all over the bed each night in the motel room and it was good to have an experienced nursing assistant available.
We are also grateful for all the wonderful thoughts and prayers on our behalf. Thank you (even though it seems so incredibly inadequate.) Tomorrow promises to be a long day. Please keep praying for James and for wisdom for us.
Love, Stephanie
Tuesday, April 3, 2007
Crossing the border
As of 3:05 pm GA time, the on-the-road Skelly's crossed the Kentucky border. They're hoping to make it to Nashville or perhaps Chattanooga tonight. James is doing well-- sleeping most of the time, I think. Hannah feeds him through his G-tube every half hour. We are all eagerly looking forward to having them home. They're really close!
Katie
Katie
Monday, April 2, 2007
They left...
the hospital at 2:00 pm GA time, and were passing Tomah, WI, around 6 pm. I just talked to Momma and they're coming up on Rockford, IL and hoping to continue till 9 MN time since James is traveling so well.
Please pray that:
1. they would be able to keep James hydrated
2. for safety
3. for protection from infection
There was one other prayer request, but I forgot it :*(.
I apologize for this late update. Should've gotten on earlier and posted this.
Katie
Please pray that:
1. they would be able to keep James hydrated
2. for safety
3. for protection from infection
There was one other prayer request, but I forgot it :*(.
I apologize for this late update. Should've gotten on earlier and posted this.
Katie
Keeping things in perspective
One of the incredible things about a journey like childhood cancer is being in the hospital, having friends and family who are so sorry for all the things we are enduring and looking around and seeing so many families that have it so much harder than we do.
I recently met another mom on the floor whose seven-year-old son, Hunter, had ALL (the same leukemia James has) at the age of three. He went through three years and three months of treatment and then 11 months of followup. Just after his 11 month follow up check up, he relapsed. It took three weeks for them to diagnose his relapse (to determine what kind of cancer it is) and he just finished his first month of treatment. He will have to have a bone marrow transplant at some point soon. They have been in the hospital here or in Des Moines for seven weeks, they expect to remain here until Hunter has his transplant (probably in two more months) and then they will have to stay a minimum of 90 days following his transplant. His mom, Tori, was finishing up her second year of nursing school during his first year of chemo. Her husband couldn't deal with all the stress and now she is a single mom with three children. Home is Des Moines, IA.
I also met another mom whose four week old daughter, Chloe, has been in ICU for all but a few days of the last month. She was born in Red Wing, MN with the vessels in her heart reversed (as I understand it). She had surgery and then was placed on a special machine, needed to keep her alive, which can cause blindness and developmental delays or retardation on down the road. The only time, Jennifer has been able to hold Chloe was the three days they weren't in ICU. They expect to be in the hospital for at least one to two more months and are very uncertain about what kind of care Chloe will require when they take her home. This mom, Jennifer, has a 20-month-old son at home.
The remarkable thing about these moms, and others I have met, is that none of them complain about their circumstances. They talk about it without bitterness and are senstive to others who are walking through other trials that may not be as severe as their own.
It is a privilege to meet these people. I'm sure they would appreciate your prayers.
Love, Stephanie
I recently met another mom on the floor whose seven-year-old son, Hunter, had ALL (the same leukemia James has) at the age of three. He went through three years and three months of treatment and then 11 months of followup. Just after his 11 month follow up check up, he relapsed. It took three weeks for them to diagnose his relapse (to determine what kind of cancer it is) and he just finished his first month of treatment. He will have to have a bone marrow transplant at some point soon. They have been in the hospital here or in Des Moines for seven weeks, they expect to remain here until Hunter has his transplant (probably in two more months) and then they will have to stay a minimum of 90 days following his transplant. His mom, Tori, was finishing up her second year of nursing school during his first year of chemo. Her husband couldn't deal with all the stress and now she is a single mom with three children. Home is Des Moines, IA.
I also met another mom whose four week old daughter, Chloe, has been in ICU for all but a few days of the last month. She was born in Red Wing, MN with the vessels in her heart reversed (as I understand it). She had surgery and then was placed on a special machine, needed to keep her alive, which can cause blindness and developmental delays or retardation on down the road. The only time, Jennifer has been able to hold Chloe was the three days they weren't in ICU. They expect to be in the hospital for at least one to two more months and are very uncertain about what kind of care Chloe will require when they take her home. This mom, Jennifer, has a 20-month-old son at home.
The remarkable thing about these moms, and others I have met, is that none of them complain about their circumstances. They talk about it without bitterness and are senstive to others who are walking through other trials that may not be as severe as their own.
It is a privilege to meet these people. I'm sure they would appreciate your prayers.
Love, Stephanie
A slight delay
We had a good night once James finally got cleaned out. He rested very comfortably for the night. His nurse got us up early (about 5:30), at my request so that we could give him a bath, change the dressing over his central line site (not my favorite thing to do, by far, but not as nerve-racking as I was afraid it would be.
This morning James' blood work came back saying that his hemoglobin was too low to travel, so he will have to get a pint of blood before we can leave.
Because it has been a while since he has gotten blood, they will need to do a type and cross before they can start the blood transfusion. The transfusion takes about two hours to do and the doctor just said to plan on a four to six hour delay.
This may mean it will take three 'easier' days to get to Toomsboro. Please pray for wisdom to balance our strong desire to be home and be together as a family again with James' needs. And that we would know how to help James' little system to work better (especially in terms of moving things through) while he has to deal with the added stress/complication of chemotherapy.
I hope to post a quick note whenever we get to leave--or if there is a longer delay.
Love, Stephanie
This morning James' blood work came back saying that his hemoglobin was too low to travel, so he will have to get a pint of blood before we can leave.
Because it has been a while since he has gotten blood, they will need to do a type and cross before they can start the blood transfusion. The transfusion takes about two hours to do and the doctor just said to plan on a four to six hour delay.
This may mean it will take three 'easier' days to get to Toomsboro. Please pray for wisdom to balance our strong desire to be home and be together as a family again with James' needs. And that we would know how to help James' little system to work better (especially in terms of moving things through) while he has to deal with the added stress/complication of chemotherapy.
I hope to post a quick note whenever we get to leave--or if there is a longer delay.
Love, Stephanie
Sunday, April 1, 2007
Success!
It worked, PTL! James is resting nicely and his belly is much softer. The plan for the night is to make sure he all hydrated and ready to go tomorrow. Since everything is now 'clean and fresh' we'll feel pretty good about the trip to Georgia.
But please don't stop praying!
Love, Stephanie
But please don't stop praying!
Love, Stephanie
April Fools
Today is April 1, and therefore April Fools day. This evening there has been alot of slime going around. Tara, one of the nurses acted in company with the charge nurse, Kathy, and they slimed the HUC's phone. (The HUC is the unit secretary.) I helped out by watching out for Jill, the HUC, and told Tara when I saw her.)
Then to get back, Jill slimed our door, because she thought that Tera was our nurse. She was not. Barb, James' evening nurse got the slime. Next, Jill slimed Kathy's phone and mouse and got Kathy to use her mouse.
Jill came into our room and asked me to come out in a few minutes, which I did. I went to the other side of the nurses station and talked with some of the nurses. When I went back, Jill had slimed our door to get me. That time she failed, I saw the glint of the light in the slime and having watched them slimed the other nurses, I opened the door just above the slime.
It has been real fun this evening. Thanks to April fools day and all the nurses.
Love, Hannah
Then to get back, Jill slimed our door, because she thought that Tera was our nurse. She was not. Barb, James' evening nurse got the slime. Next, Jill slimed Kathy's phone and mouse and got Kathy to use her mouse.
Jill came into our room and asked me to come out in a few minutes, which I did. I went to the other side of the nurses station and talked with some of the nurses. When I went back, Jill had slimed our door to get me. That time she failed, I saw the glint of the light in the slime and having watched them slimed the other nurses, I opened the door just above the slime.
It has been real fun this evening. Thanks to April fools day and all the nurses.
Love, Hannah
My hero
This is the better of two pictures I got of James and Vern (it's a lighting thing). My hero (our hero) arrived this afternoon after two days, 21 hours and 1,351 miles on the road and I got to watch him glory in the chance to snuggle, rock and comfort his hurting little guy. He left about 6 p.m. to spend some time with and stay at his mom's.
We are still hoping to leave tomorrow morning, but there has been no poop yet. Glycerin suppositories didn't do the trick and an enema (half of one, actually) is next up on the roster. Please keep praying. I promise to post the outcome... okay, I'll just let you know if it works.
Love, Stephanie
Pray for poop
James is having a harder time today moving things through and his belly is distended. We have given him something called Miralax (I think that is how it is spelled) and are hoping for some action today. It would, more than likely, help his comfort level quite a bit. It is hard to eat, or to have food but into your belly via a g-tube, when you are already full.
I am trying real hard to come down with a cold or something. It will be my second one. Must be the hospital.
At about 10:30 (local time) Vern was leaving Janesville, Wisconsin. We are hoping he will arrive around 4 or 4:30.
The doctors are hoping to get us out of here by 9:00 tomorrow morning, so we still have a few things to do. I need to go pick up James meds and supplies from the pharmacy and sit down with his nurse to make a chart of when he is supposed to get everything. We have most of our stuff packed in our bags and a box and we hope to get some of that into the car this afternoon.
Please pray:
I am trying real hard to come down with a cold or something. It will be my second one. Must be the hospital.
At about 10:30 (local time) Vern was leaving Janesville, Wisconsin. We are hoping he will arrive around 4 or 4:30.
The doctors are hoping to get us out of here by 9:00 tomorrow morning, so we still have a few things to do. I need to go pick up James meds and supplies from the pharmacy and sit down with his nurse to make a chart of when he is supposed to get everything. We have most of our stuff packed in our bags and a box and we hope to get some of that into the car this afternoon.
Please pray:
- for continued safety and good driving for Vern.
- for good health for all of us (no colds, etc).
- for James to poop and get comfortable and be able to eat.
Love, Stephanie
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