My heart bleeds for my only son

I have watched my 16yo son for the last 8 months continue to get sicker and sicker as I begged his doctors to please find him an answer. He went through doctor after doctor, test, after test, after test. He is now so ill he barely has the strength to go to the bathroom. He has given up his life for the last 8 months loosing his friends, his schooling, and all the joy a teenager should have. How can the doctors be so clueless while I can now jump on the internet and find every one of his symptoms fit to a tee to Hodgkins in a matter of minutes? How can this be happening? He went in for his lymph node biopsy last week. After a ignorant tech botched the sample, he now has to have it repeated next week while my poor son continues to deteriorate and wait. But what little came out of it pointed to Hodgkins. I feel so helpless and I am honestly scared to death knowing how long he has been sick. I want to scream and cry all at the same time. How could they let this go on for so long? I told them he had fevers and chills. I told them he was itchy. I told them he was weak and tired. I told them his lymph nodes were swollen. I told them his bones hurt. I told them everything. Dear God please give my son his life back. I beg you! I would trade shoes in a heartbeat for this jewel you have blessed me with if only you'll let me.

Dearest SnowBunny,
I feel so helpless just reading your post. I wish there was some way any of us could help you or your son but advice and support is the only thing we can do... so I hope we can do it well.
His symptoms certainly sound familar to me (a 2a HL survivor of 6 months) but obviously without a technical diagnosis they doctors cannot move forward. I know you know their hands are tied until those results come back, but you are right in your frustration that you feel they haven't listened to you at all.
It is simply unacceptable that the pathology tech has errored with the biopsy and for this mistake you're son (and you) have to pay. It's not fair and it shouldn't happen. But now is the time to focus on the upcoming biopsy and the possible findings in that. It will be tricky no matter what the answer and patience will be something you can never have enough of. Whether or not it comes back as HL, you son is still really sick.

Forgive me, but it sounds like you're not that confident in your doctor (correct me if I'm wrong)? This worries me, especially if he's the one you'll be dealing with in trying to find another diagnosis if the biopsy is clear. It may seem like way too much work right now, but a second opinion is by far the best move anyone can make in these situations. Especially after eight months.

Please let me know when your son is getting his biopsy done and obviously the results. Feel free to ask any questions you need to. We are all hear for you and your poor boy.

My thoughts are with you. Love Annie

Reading your comments Annie and those of others, how do you get a second opinion of a biopsy and is such a good idea for a confirmation of Hodgkins before treatment? Or are we talking of a second opinion of just his case in general? Another question is that he had a bone marrow biopsy about a month ago and I was told they were looking for leukemia. If this is positive should the bone marrow test be repeated to see if it has since migrated? How quickly does this usually spread? Questions, questions, questions! I hope I’m not over posting!

Hi Snowbunny..I understand how you feel. My only son (21) was diagnosed with 2-a HL and just went through his first treatment Wednesday. It is very scary to sit there and watch what is happening and be helpless. It is our job as a mother to protect our children. I too, prayed to God to give me this illness instead and of course he doesn't work that way, so I collected myself, found this forum (which was sent by God to help me get through all of this) and started finding out everything I could. Luckily my son’s doctor was aggressive and things went very fast for us. I agree with Annie1985. A second opinion is VERY NECESSARY, especially when you do not have faith in your doctors. You have waited this long. I started making my son a chocolate smoothie to drink and adding a meal replacement in it everyday. Three times a day, minimum. My son only weighs 155 and is 6/2. He loves them and since he doesn't have much of an appetite, this helps keep him with the necessary minerals and vitamins to survive. The day my son had his port surgery a nurse came in to see him. She was about 30. She told us that about 15 years ago she had been treated for HL stage 4. It was mostly in her chest and groin area but was found everywhere including here bone marrow. She is still here with us 15 years later so no matter the stage it is proof that this can be beaten. I will keep you both in my prayers. Keep up the fight. I wish you all the best.

My trust in the doctors is obviously diminishing. And this is not just the hematologist but also his pediatrician, his immunologist, and his gasto. His infectious disease took her two hour look and said he needs a bone marrow biopsy and I'm sending him to the hemotologist. I am most angry at his gastro though. He was a patient there for 4 years being treated for Ulcerative Colitis. He was on everything from the basics to Remicade to Humira. Just before he got sick 8 months ago he had a flare and they gave him a Humira shot a week early. At the time I questioned the safety of this but was told it was fine. Shortly thereafter he started running fevers. Knowing what I know now the doctor should have immediately looked at the possibilities of cancer. Instead I was told things like it's an ear infection, or the more common viral infection that only time will fix. Time sure didn't fix that one! I have been told that I am seeing the best doctors Alaska has to offer. Two weeks ago I told his infectious disease doctor that I wanted to go out of state regardless, as my boy's health was deteriorating, and she has been working on this but without a diagnosis picking a hospital is difficult. Then this sample got botched by the lab in Oregon and we see the surgeon again on Monday to evaluate his fitness for another sample. My son is 6' and is down to 135lbs. I have started making fruit smoothies with protein powder to give him some nutrition. I don't know if this is the correct course or not but when he eats not much outside of an infant's diet and loads it with popsicles to control his fevers, I know he can't be sustained on that. I read something last night on here about sugar feeding the cancer. What is a proper diet for someone like him? Thanks all for your kind words. I am ever so grateful! And I wish you all the best as well!

I am not a doctor and can not offer you any advice on what to do for your son but I can tell you what our doctor said. I have read the same articles you have about sugar and I had the same concerns. He told us that at this point it really didn't matter what he was eating. If you take away the sugar, the good cells could be damaged as they need the glucose to survive and if you feed them the bad ones grow too. So at this point, it was better to be eating and as long as he is, I am happy. Treating the bad cells with the chemo was our only choice and standard care for HL. After our doctor finished talking to us, the risk of my son starving and harming the good cells at this point out weighed the bennifits of not eating suagr. We make fruit smoothies and also chocolate protein drinks with a meal replacement to help keep up his weight and the protein is suppose to be very good for him right now. After he is well, that will be another story. Good luck.

I am just writing in now to tell you that my daughter too had a misdiagnosis. They originally thought she had a thyroid problem or enlarged para thyroid.After a nuclear test confirmed there was nothing wrong with
her thyroid, the doctors at one of the Best hospitals in PHILA. dismissed her, blaming the radiaologist saying he misread her films. As a mother I knew there was something wrong and did not give up. I found another doctor and another hospital. My daugher just finished her 10th out of 12 chemo treatments. She had severe itching on her legs for 3-4 years and after her first treatment the itiching went away.
She is Great. I believe the fear is in the "NOT KNOWING". Once you have all of your answeres and course of action it makes it so much easier. Good Luck

Thank you all so much for your support! I can't tell you the weight it lifts. And yes Mary Anne, I think the scary part is the unknown! Last night we told our son that he would be seeing the doc today to evaluate him to have the neck biopsy reperformed. He didn't take it great but better than I we had expected.
How many others with HL had fevers and chills before treatment? He's had this for 8 months and up until a month ago they were on a cycle of one week on and week off. His temps ran from 95 (chills) to over 105 (fevers). The fever he's on now has been here for over a month. And gets his tylenol every 6 hours to sustain him. I'm just wondering how common this is. Thanks all!

My son had a fever for about a week. Doctor told us not to take Tylenol or Advil because it was hard on his liver. Told us to take Alieve. Good luck.

snobunny: I so feel your pain. Our daughter was diagnosed with Hodgkins lymphoma in her fourth month of pregnancy. She is taking chemo and supposedly it will be relatively safe for the baby. I remember begging God to take it all from her and give it to me. The fear is there and it won't go away until I hear she is cancer free. She is stage 2B as they are calling it a bulky mass although the total size of the necrotic mass is about the size of a baseball and only in the lymph nodes between her heart and sternum. Of course since she is an adult, I am not privy to alot of the information they are giving her. I want to hold her hand and take her to the doc so I can hear everything first-hand. Hang in there Mom...the good news is that even if advanced, there is a very high cure rate...hang on though, it is going to be a rough ride...

hope everything works out for you and your son.i know its a scary time in your life ive been there on march 17th 2009 with my 12 yr old son who was diagnosed with hodgkins he is my hero and will always be my hero..keep the faith

And never give a cancer patient ibpropen for
fevers.. I learned the hard way..God bless

For you and your son:

One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there was one only.
This bothered me because I noticed that during the low periods of my life,
when I was suffering from anguish,
sorrow or defeat,
I could see only one set of footprints,
so I said to the Lord,
“You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during the most trying periods of my life
there has only been one set of footprints in the sand.
Why, when I needed you most, have you not been there for me?”
The Lord replied,
“The years when you have seen only one set of footprints,
my child, is when I carried you.”

First off, what kind of insurance do you have? Second, where do you live? There has to be better doctors out there somewhere. Honestly, I'm sick to my stomach hearing this--health comes first! How can so many idiots out there with their medical licenses? I am so sorry for you.

As for your plea to god, this is the point where Christians can stop reading. Of all my friends and family who have had cancer or lost their child or loved one to cancer, 95% of them realized there is no god. You beg "him" for mercy, but where the heck was he when gave this to your child. Your child's sickness isn't am act of god seeing how much you can handle. This is biology and screwed up cells. If I were you, look to those around you for comfort. God isn't doing much for ya. And like I said, if you need god to get through this, so be it. But most cancersurvivors have realized otherwise... Or Manu,I should say.
We are here for you and your son.

Manu=many

Thanks all for your support! Ryansmom- why no ibuprofen? Cali- I have Blue Cross for him and we live in Alaska. I was raised in a very religious family. Consequently my beliefs are deep rooted and that will never change. But we all have a right to our opinions and I hold that against no one.

It has been a very long week for us here. On Thursday 10/28 we were given the positive diagnosis. Doc said it was considered 3B being that it is in his neck, armpits, chest, abdomen, and spleen. He had his hickman installed on Tuesday and his PET scan. We started our 6 months of chemo on Wednesday and are told this will be followed up by radiation. We meet with that doc in 2 weeks. Wednesday and Thursday went well for him and his fevers stopped on Thursday! :-) Although his temp has not come back to normal and remains between 95-96. Last night the nausea kicked in. Doc put him on Ativan to try to re-administer the chemo drugs we give from home. Got through that course but now he's throwing up again this morning. How often does this disease work like you see in the movies where people are always sick? We were also told that his spleen would be killed by the radiation and would require lifelong immunizations. Does this sound accurate. There are so many pills strung out across our table it is just mind bogging!
We met with his gastro on Thursday and he felt very strongly that this was caused by the Humira he was taking for his Ulcerative Colitis. He said he would be reporting it to the FDA. How frustrating that they didn't look at that possibility when he first started these fevers! Maybe he wouldn't be quite so sick!

No ibprofen because it thins your blood and with
doing chemo you have to watch his platles and with
low platlets he can get nose bleeds bad ones and for
nausea ask about a patch called transderm
stays behind the ear for 3 days then they remove
and put a new one my son loved those.God
bless

Alaska sounds like a terrible place to have cancer. I'm sorry for your experience. I also wish upon you some enlightenment, in whatever form that gives you some peace about your son.