Worrying about DS-update

[mrsbornkuntry]

I'm so worried right now, I just need to get it out a little. 8 years ago DS was diagnosed with AML (a tough form of leukemia that is most commonly seen in adults), he was 22 months old. He went through chemo and went into remission for 15 months, then he relapsed so he started chemo again. We found out he relapsed because he kept crying that his feet hurt and he stopped walking on them. He then had a stem cell transplant from an unrelated donor. Through all of his treatments his oncologist kept saying that he was "writing his own book" because he didn't react to anything the way most people did, he was always playing and put up a battle when anyone besides me tried to touch him.

It has now been 6 years since his transplant, he has been the healthiest of my 5 children. Hardly ever sick. But since the beginning of April he started complaining that his legs hurt and sometimes his back. He started out calling me from school to come get him so instead I just took him some Motrin (to make sure he wasn't faking to get out of school), but it continued. We saw the pediatrician, she did bloodwork which came back normal, but she won't do anything else because of his history she wants him to see an oncologist. No one knows what it is. I finally got an appt. with an oncologist for Friday and I'm just so scared that they will say it's some form of cancer. I keep researching trying to find something else it could be, but I'm coming up empty handed.

I would appreciate it if you could keep us in your thoughts this week, this is really weighing heavily on me.





update

Thank-you for all of your well wishes. DH took DS to the oncologist today since I wasn't feeling well. They did more blood work and x-rays. She said it was highly unlikely that it was a relapse since it has been 6 years since his transplant. She was going to prescribe something for his pain, but between her and Dh they forgot before they left so I'm going to see if I can reach her tomorrow to ask if she'll call it in to the pharmacy. (we leave for WDW tomorrow night ) So we don't really have any answers, but some reassurance for now.

 

[luvmarypoppins]

Sending prayers that your ds doctor visit will go well on Friday. Praying you wil have God's peace. My doctors always tell me to be very careful what you read out there.

 

[cgrobin]

I am so sorry you are being haunted by AML again. Hopefully this will turn out to be something simple like growing pains. Growing pains can cause actual pain. (I read a post on it years ago and it stuck in my mind.)

Does your son still get annual check up from his oncologist? I would suspect they'll want to more blood work and a bone marrow biopsy to verify he's still in remission and that the donor graft has held.

Did he have any GVH after his transplant?

 

[minniebeth]

Keeping you in my prayers that DS will be fine!
I agree with cgrobin...My kids really feel the affects of growing pains as well...not to downplay it, I'm sure he has discomfort with it, but let's hope that's all it is!

 

[mrsbornkuntry]

I am so sorry you are being haunted by AML again. Hopefully this will turn out to be something simple like growing pains. Growing pains can cause actual pain. (I read a post on it years ago and it stuck in my mind.)

Does your son still get annual check up from his oncologist? I would suspect they'll want to more blood work and a bone marrow biopsy to verify he's still in remission and that the donor graft has held.

Did he have any GVH after his transplant?

The extent of his GVH was basically severe eczema and he's well over that.

He has a yearly check-up, but it doesn't have to be with an oncologist. They do bloodwork, an EKG, pulmonary lung function studies and a chest x-ray. Most of those are to check for side effects of the chemo and radiation. They don't do a bone marrow biopsy unless they find any suspect cells in his blood. He is due for this work-up, it's been a year, but we moved to another state and I am still waiting for his medical records to be sent. I finally gave up on that when he started hurting and made the appt.

My first thought was growing pains as well, but the pediatrician said she didn't think it sounded like that. I am taking that with a grain of salt because to be honest I haven't been thrilled with her, but I've had a hard time finding another one here. I'm still back and forth about how much pain he's in because first of all, it doesn't interrupt his sleep, and second since these pains have started he taught himself to ride a bike without training wheels. I realize how silly that sounds for a 10 year old, but he hadn't been able to do it because his legs weren't strong enought to pedal, the muscles were wasted from steroids.

But some mornings he wakes up moaning that his back and legs hurt or he'll get off the bus and just drag himself home and lay around while everyone else is playing.

 

[mrsbornkuntry]

Thank-you for all of your prayers. I am sincerely hoping that this is just growing pains or some other relatively simple explanation.

 

[mrsbornkuntry]

Cgrobin, thanks for the link, it does sound somewhat like growing pains, except he sometimes complains when he wakes up.

Also, I was looking at the link in your signature and want to tell you what a great thing this is. We had saved the cord blood from our baby's birth (I was 5 months pregnant when he was diagnosed), but it wasn't a large sample. It was a 50% match. The hospital was able to locate cord blood that was a better match and in a larger amount which they said tended to yield better results. So the simple act of a stranger donating the cord blood that would've been thrown away saved my DS's life.

 

[Eeyores Butterfly]

I am so sorry you are going through this. I'm saying prayers for your son. Hopefully it's no cancer, just something mild that can be easily treated.

 

[MinnyGranny62]

I am praying for a happy outcome on Fri. Let's just pray that it will be something simple. Prayers have been sent your way. Shirley

 

[cgrobin]

I know the doctors look for some GVH, as it means there should also have been a graft vs leukemia effect at the same time. Doctor's like to see that.

My friend's college age son had a double cord transplant for AML about 3 years ago. He still has make periodic visits to the transplant center and his local oncologist for checkups. I don't know if that will change when he hits 5 yeas. It's odd, because he still sees a pediatric oncologist and he must be the biggest 'kid' there.

I don't understand why cord donations aren't better promoted. They should be as much a part of the public awareness as donating blood. Every obstetrician's office should encourage expectant mothers to donate. It cost nothing and doesn't even require a pin prick. It's simply preserving something rather than tossing it out as medical waste.

While it seems reasonable that after the effects of the chemo, with his muscles finally catching up, he could have some pain. Or maybe it's muscle pain and not bone pain. Of course, once you've been down this path, nothing is ever taken at face value again. You never 100% trust that a cold is just a cold. *sigh*

I'm wishing you guys good luck with your appointment on Friday. Keep us posted.

 

[mrsbornkuntry]

I
I don't understand why cord donations aren't better promoted. They should be as much a part of the public awareness as donating blood. Every obstetrician's office should encourage expectant mothers to donate. It cost nothing and doesn't even require a pin prick. It's simply preserving something rather than tossing it out as medical waste.

DS was treated at Duke, but I delivered my 5th child at UNC in Chapel Hill, NC and while I was IN LABOR someone came to my room to talk to me about donating, lol. I told them I would like to, but couldn't because of my other DS, but yeah, I really think that's something they should discuss before the mother is in labor!

DS stopped being seen by an oncologist at 18 months post transplant, but he was really doing wonderfully, he was a pretty unusual case. He started growing white blood cells at 13 days post transplant and was released on day 25 because he was riding a trike up and down the halls playing tag with the nurses, the doctor took one look at him one day and said "he needs to go home!" Granted he still went home on 12 different meds and iv nutrition and had to go to the clinic every day for the first 6 months, but he was still the poster child for stem cell transplants.

 

[MaryJPixie]

I'm so worried right now, I just need to get it out a little. 8 years ago DS was diagnosed with AML (a tough form of leukemia that is most commonly seen in adults), he was 22 months old. He went through chemo and went into remission for 15 months, then he relapsed so he started chemo again. We found out he relapsed because he kept crying that his feet hurt and he stopped walking on them. He then had a stem cell transplant from an unrelated donor. Through all of his treatments his oncologist kept saying that he was "writing his own book" because he didn't react to anything the way most people did, he was always playing and put up a battle when anyone besides me tried to touch him.

It has now been 6 years since his transplant, he has been the healthiest of my 5 children. Hardly ever sick. But since the beginning of April he started complaining that his legs hurt and sometimes his back. He started out calling me from school to come get him so instead I just took him some Motrin (to make sure he wasn't faking to get out of school), but it continued. We saw the pediatrician, she did bloodwork which came back normal, but she won't do anything else because of his history she wants him to see an oncologist. No one knows what it is. I finally got an appt. with an oncologist for Friday and I'm just so scared that they will say it's some form of cancer. I keep researching trying to find something else it could be, but I'm coming up empty handed.

I would appreciate it if you could keep us in your thoughts this week, this is really weighing heavily on me.

 

[Regina]

Knowing your son's history, it's little wonder why you're concerned.

Here's another prayer that it isn't anything serious.

 

[frdeb1999]

Thoughts and prayers that it won't be anything serious.

 

[Mskanga]

Having had my daughter with a different type of cancer I know how scary this is not to freak out with things like that.
One thing I have learned from all this is if I cannot find a doctor I feel comfortable with ....keep looking !!!
The first doctor that saw my daughter told me to take her to physical therapy for two months because she most likely had growing pains or a pulled muscle ( she had pain on her knee ) and THANK GOD I did not believe her , took her to another doctor two days later and they found out she had bone cancer !!! Had I listened to that woman my daughter would have been metastatic and her prognosis would have been a lot different.

 

[cgrobin]

I asked my friend who's done had his transplant at Duke. This is the reply she sent me.

"As far as your friend, i have seen a few children that were on steroids that ended up with avascular necrosis of the hips causing leg pain and some that had back pain and the steroids destroyed their back. That certainly is a possibility."

I believe another daughter of another online friend is having physical therapy now that she finished LTM for ALL.

I'm just surprised that Duke doesn't want you son to at least come in for annual checkups. I had an auto 2 1/2 years ago and still have to check in with Florida Hospital on the anniversary of my transplant. My regular onc (MD Anderson CC Orlando) won't drop be to twice a year a year checkups until I'm three years out from transplant.

If you can get a copy of your son's medical records you should scan them and put them on a little USB drive so you can update a doctors and hospitals quickly if needed.

 

[mrsbornkuntry]

I asked my friend who's done had his transplant at Duke. This is the reply she sent me.

"As far as your friend, i have seen a few children that were on steroids that ended up with avascular necrosis of the hips causing leg pain and some that had back pain and the steroids destroyed their back. That certainly is a possibility."

I believe another daughter of another online friend is having physical therapy now that she finished LTM for ALL.

I'm just surprised that Duke doesn't want you son to at least come in for annual checkups. I had an auto 2 1/2 years ago and still have to check in with Florida Hospital on the anniversary of my transplant. My regular onc (MD Anderson CC Orlando) won't drop be to twice a year a year checkups until I'm three years out from transplant.

If you can get a copy of your son's medical records you should scan them and put them on a little USB drive so you can update a doctors and hospitals quickly if needed.

Thank-you for mentioning him to someone and it makes me feel better to know that there are other possibilities for his pain.

I had no idea this was unusual, but while we lived in NC our pediatrician did work very closely with his Dr. at Duke concerning DS. After that we moved to WA (military) and he did see an oncologist there when the pediatrician recommended it and he got a cbc every 6 months. Then when he reached 5 years post-transplant they went to yearly cbc's. But we moved back to NC 9 months ago and I tried contacting his Dr. at Duke about this and he never responded so I found an oncologist through my insurance company at UNC.

My husband left active duty 9 months ago so the Army hospital is supposed to be sending our records, but so far we've only received mine. That is a great idea about putting them on a usb drive, I will definitely do that when I get them.

 

[cgrobin]

If your DS has his transplant at Duke, you can try contacting them. He would have had his most aggressive treatment there plus any DNA tests on his blood. They would likely have copies of his records from his original oncologist. You can probably just contact the transplant unit and they'll let you know what to do.

One thing I would expect them to do now is check his blood to see if it's still 100% donor.

 

[cgrobin]

If your DS has his transplant at Duke, you can try contacting them. He would have had his most aggressive treatment there plus any DNA tests on his blood. They would likely have copies of his records from his original oncologist. You can probably just contact the transplant unit and they'll let you know what to do.

One thing I would expect them to do now is check his blood to see if it's still 100% donor.

 

[cgrobin]

I'm glad the doctor believes it's unlikely it's relapse. Obviously you want to know for sure.

If you don't get the prescription before you leave for WDW the doctor should be able to phone it in. I know there is a pharmacy that delivers to WDW but I don't know it's name. There is a small pharmacy next to the Centra Care Clinic on 535 just north of the entrance to WDW and across the street from Crossroads.

http://www.centracare.org/tourism.php

Enjoy your trip!