Discussion Board Forums Introductions! My Introduction to the club and trouble finding help for my son

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  • #80664
    marions
    Moderator

    Makua…Wonderful to hear that your son is responding well to the treatments and that things are looking up.
    A tumor board is comprised of a multidisciplinary team of specialists i.e. Surgery, Medical Oncology, Radiation Oncology, Radiology and Pathology. Collectively this group will evaluate and design the best course of action for each patient.
    Please take care of yourself as well, dear Makua. Have you seen a doctor?
    Hugs,
    Marion

    #80663
    lainy
    Participant

    Dear Makua, I am so glad to hear your son is getting better. I am also extremely happy he is going to Colorado. The best thing is to have a team and now he has one! Your DIL seems so be advocating for your son very well and she relays the news to you and that is all good. It also sounds like you are both close and both have done a good job. I wish for your son to have continued progress and can’t wait to hear what they tell him in Colorado. Best wishes and good luck.

    #80662
    kvolland
    Participant

    Makua –
    Sound like things are headed in the right direction now. It’s too bad he has the infection but at least he is in the hospital getting treatment now. The medications they are giving him are probably going to make him feel a whole lot better. Fluids and all the other stuff will help too.
    We have been down the infection road several times too. Once just two days before his surgery…..when they placed his bile drain he got a blood infection. They treated him with antibiotics and anti-fungal medications and were still able to surgery. But he was on oral stuff for a month after surgery.
    Then he had three more infections after that. Never did find the cause although they think it is from his gut where the surgery was. It seemed that every time we had chemo three days later he was in the hospital for a 5 day stay. So far none with the chemo we are one now.
    I would suggest to your DIL to get Home Health involved since maybe they can help keep him out of the hospital and it is most likely covered with their health insurance. Will give her and extra set of eyes on him without having to go in to the doctor all the time.

    KrisV

    #80661
    makua
    Participant

    Thanks to all for your kind replies and help.
    My DIL just phoned me that Dr. Schulick’s assistent just called her, she only now got the message my DIL left.
    It seems that Dr. Schulick still does not know that my son is trying to contact him, the doctor is away for 2 weeks. However, his assistant has all the records from John’s Hopkins now. She cannot get the records from Robert Wood Johnson hospital since it seems hospitals do not give out any records until after a patient has been discharged. I do not understand that at all, seems counterproductive to me. In any case, the assistant said they will want him to come out to Colorado for an appointment on April 24, and he will be seen by a whole team of specialists. My DIL was calling me from work, so when she enumerated all the specialists, I could not keep them all in mind, and she was talking hurriedly from work. It seemed like every kind of doctor you can imagine, a whole team.
    I would imagine that if Dr, Schulick does not want this appointment to take place when he gets back, he will let us know. I am very happy that they have made contact with my DIL, since she always has the most up to date info, and I, of course get my info 2nd hand.

    My son is going to spend the whole weekend and some of next week in the hospital. He evidently had a fungal infection which caused the 3.5 fever.
    His temp is good now, the meds are working, and he feels much better. He has been keeping his food down and is on a more normal diet. He cannot begin his chemo till his blood shows that all infection is gone. Nor can he have any other sort of port put in place etc.
    I have enomrous swollen glands, and feel awful, (I think it is all getting to me) so I won’t be able to visit him in the oncology ward, but I call him on the phone.

    I really misunderstood Dr. Schulick’s assistant and thought she had spoken with him, but at least we have an appointment if the doctor wants him to keep it, and so there is nothing else for me to do in the meantime. I am so glad that they are in direct contact with my DIL now.

    #80660
    willow
    Participant

    Below is what I found Marinol. I don’t have experience with this prescription pill but am glad you mentioned it as it may be of interest to others. They mention importance of precise dosage, potential serious side effects from overdose and potential for serious withdrawals (indicating it can be addictive when used long term).
    I also want to mention that Dr Sanjay Gupta is hosting a documentary tonight on CNN about medical marijuana in its various forms and uses. Interestingly, on the news this morning, he mentioned another CBD-rich marijuana medication (not Marinol) used as an antisezure med, even in babies, that has very little THC (the ingredient which make a person feel “high”). Other THC-based forms are for pain control, as an appetite inducer and anti-nausea med. The doc tonight is called “Weed 2: Cannabis Madness”.

    MARINOL ORAL USES
    Marinol is aka Dronabinol and is used to treat nausea and vomiting caused by cancer chemotherapy. It is usually used when other drugs to control nausea and vomiting have not been successful. Dronabinol is also used to treat loss of appetite and weight loss in patients with HIV infection. Dronabinol (also called THC) is a man-made form of the active natural substance in marijuana.
    How to use Marinol oral
    Read the Patient Information Leaflet if available from your pharmacist before you start taking dronabinol and each time you get a refill. If you have any questions, ask your doctor or pharmacist.
    Take this medication by mouth as directed by your doctor, usually 3 to 4 times daily if you are taking it to control nausea and vomiting or twice daily (before lunch and before dinner) if you are taking it to treat appetite loss. Follow your doctor’s instructions carefully.
    The dosage is based on your medical condition and response to treatment. If you are taking this medication to control nausea and vomiting, your dosage may also be based on your body size.
    Do not increase your dose or use this drug more often or for longer than prescribed. Your condition will not improve any faster, and your risk of serious side effects will increase.
    This medication may cause withdrawal reactions, especially if it has been used regularly for a long time or in high doses. In such cases, withdrawal symptoms (such as irritability, trouble sleeping, restlessness, hot flashes, and diarrhea) may occur if you suddenly stop using this medication. To prevent withdrawal reactions, your doctor may reduce your dose gradually. Consult your doctor or pharmacist for more details, and report any withdrawal reactions immediately.
    Along with its benefits, this medication may rarely cause abnormal drug-seeking behavior (addiction). This risk may be increased if you have abused alcohol or drugs in the past. Take this medication exactly as prescribed to lessen the risk of addiction.
    Tell your doctor if your condition persists or worsens.

    #80659
    marions
    Moderator

    Makua….you have accomplished what you had set out do. Congratulations and kudos to you.
    Sending tons of good wishes your way.
    Hugs,
    Marion

    #80658
    lainy
    Participant

    Makuna I am so glad to hear that you got hold of Dr. S. Just want to say…look at you tonight! You have more strength than you ever thought because I see a great change from this morning to tonight. We all need a little hope and then we can climb the highest mountain! Stay strong you are not alone as we are all here.

    #80657
    kvolland
    Participant

    Makua –
    Sounds like things are headed in a better direction than they were. So glad to hear that. One thing you might suggest to your DIL is that she ask for Home Health (visiting nurses) at home when he gets to come home. They can help a lot with the management of all the stuff he needs at home including the PICC line, nutrition and Port when it is placed.
    I will say though that getting a port will not be an absolute for no infections in the future. The PICC and the Port both will always increase the risk of infection just because it is a foreign body in your body. As a nurse I have dealt with many PICC’s and Port including with my husband and have had good luck and bad luck with both. I generally prefer the port though just because it is under the skin and when not accessed is not a worry. In fact my husband’s PICC got a blood clot around it and the Port was pulled for continual blood infections although the Port wasn’t the source.
    It’s a good thing you were the squeaky wheel and it sounds like you really go the ball rolling.
    Good luck and hopefully things are all going to be better now.

    KrisV

    #80656
    makua
    Participant

    Marion,
    Thank you so much for the encouragement to try yet again to contact Dr. Schulick. REALLY Good news!!! I was able to contact Dr. Schulick’s office this time, and spoke at length to his assistant about what has been going on with my son. She listened very patiently and then said just a moment, and when she returned she said that Dr. Schulick wants to have all my son’s records sent to him, and the name of the hospital where he is currently in the ER and having the catscan etc. and physician’s name etc.etc. They will contact JH also.
    I gave them the necessary info for getting the records, and his assistant said she would call me on Wednesday, and she would ask for all the records and let me know, but that if I wanted to call her in the meantime, she gave me her telephone number. Phew!!!

    I could feel my stomach unclenching!! What a high! Thank you so much!! This time I called the link you gave me, it was a different number than we called before.
    UPDATE:
    My DIL just texted that JH called and wants to know if Robt Woods wants to transport him down there, but he doesn’t want to go, He says it is too far away, and he is sick, his temp is 102 at the moment. they are waiting for the blood cultures to come back, but the cat scan showed that the tumor is wrapped around the stent and they can’t tell if it is blocking the stent or not, (If it is, I suppose that could account for the continued vomiting.) I don’t know how this compares to the last scan taken at JH.
    Now I have another question. Tho he does vomit every day, he vomits less than before the stent. He was actually able to eat an English Muffin yesterday, (I was shocked to hear that just now) And he kept the muffin down!!. What comes up, he says, is like a sort of stomach acid, just liquid, so we do not really understand that. Something must be getting through the stent, so it can’t be totally blocked. (seems to me)

    My DIL was sooooo happy to hear I had contacted Dr. Schulick!!! But then now she is very upset by having to make yet another decision about whether or not to have him transported down to JH, or let him stay here. I said she should wait and see what Dr. Schulick has to say on Wednesday, and in the meantime, he is safe in Robert Woods hospital which is supposed to be a very good hospital and which is much closer to home.
    She just called and is heading home, didn’t want to leave him, but she was up all night, checking his temp. etc. and is really exhausted and has to go to work tomorrow. She will go check on him before she starts.
    They are giving him antibiotics and we are hoping he will feel better tomorrow.
    I am hoping my extremely swollen glands will go down, so I can feel safe to visit him without fearing I will give him some additional infection.

    Thank you so much again. Bless you all, I am so glad I found this wonderful place.

    #80655
    makua
    Participant

    Marion,
    Oh, very good, I am about to call, and will certainly mention the foundation. I have doubts that our other messages actually reached him. Thank you very much.

    #80654
    marions
    Moderator

    Makua….I am rather disappointed that you are not able to reach Dr. Schulick. You might want to mention this foundation as well.
    Good luck
    Hugs,
    Marion

    #80653
    makua
    Participant

    Lainy, looking for your phone while talking on it, I think I have done that, or at least I know I have looked for it, while HOLDING IT, couldn’t find it anywhere of course, since it was in my hand. :-) And always returning to a room to remember why I left it. I’m doing that a lot now.
    My DIL just texted that they are giving him his ct scan. She still doesn’t know if he will be admitted. She didn’t say anything about the blood results.

    Back 2 years ago when my son had his big surgery, my doctor gave me a prescription for Xanax, and that helped during that emergency.
    I get it renewed so I know I have it, but I hesitate to use it, always thinking I should wait for a really bad situation. I have used it when I had to put a dear cat to sleep, that I’d had for about 17 years.
    I used it a couple times in the last couple weeks to help me get back to sleep at 2 a.m., and it works, I can take a whole pill, but I only take a half pill. Maybe I should take a half pill now to unclench my stomach while I’m waiting to find out what’s wrong with my son..

    I am so glad that you have found a medication that can help you, Bless your heart. I think I am going to try and call Dr Schulick in colorado again, Can’t hurt to try.

    #80652
    lainy
    Participant

    Makua, I can do those dumb things on a good day! I catch myself putting my phone in the pantry or fridge! I have never been on an anti depressant but went on one 2 months ago as I couldn’t stop crying. I am on a low dose 10mg of generic Lexapro. It has done wonders for me. No side effects and takes the edge off. You might want to talk to your own Doc about something mild as it will help you to get through this. No Mother can bare to see her child go through this. On top of that CC renders us helpless, all we can do is be there as things are not supposed to happen like this. BTW I also look for my phone while talking on it!

    #80651
    makua
    Participant

    Lainy, thank you, Yes, I will try and compile a file of what has been happening, to the best of my ability. At the moment, I am waiting for a text from my DIL to see if my son has been admitted to Robert Wood hospital.
    I am beginning to feel befuddled, and am having trouble concentrating, Just burned a pan I left on the stove, (didn’t turn off the burner, DUH!)

    I really want to thank you for letting me vent and for being there.

    #80650
    lainy
    Participant

    Dear Makua, I am just so very sorry about your son but my gut feeling is he just is not getting proper care. If I may give you a suggestion of another kind.
    When I had Home Hospice for my Teddy they were fabulous. The last 4 days of his life I transferred him to in Facility hospice. They not only dropped the ball but because of them he had a horrific end. Long story short we sued for Neglect and won. This is what I would do and it will also help put your anger somewhere. I would start a file in your computer from day 1. After it is complete up to now send it to DIL to check over for factual information. Keep it handy in case you need it down the road. I would say the ONC and Hospital have grossly neglected your son. The best attorney will take the case on a contingency. I think this will help you and your DIL and if you want to know any more please email me. BTW you don’t want a surgeon who has never worked on a CC patient before! Oh, you might want to get a copy of his records up to now as well. Take a deep breath, hang in hang on and You never know how strong you are until “strong” is the only choice you have!

Viewing 15 posts - 46 through 60 (of 71 total)
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