Long Term Care

I think there's two ways to look at this.

Yes, in general, when someone is well, they require less care than when their condition is acute.

As a parent who's child has been acutely ill, you're always going to worry.

If she's having symptoms that you're concerned about, then insist that they be explored. However, you wouldn't want a chest x-ray every time she coughs. It's not healthy for her to have that many x-rays and kids do get sick and have coughs. Everyone should receive care when needed, but a common cold can receive care at home. I'm not trying to say that you're overreacting so please know that. However, if she hadn't been sick, would you still want the same care that you do now? It's a little different situation, but just to offer that perspective.

It's a difficult transition, from being in this critical stage of the disease to one of remission. From being the center of every healthcare professional's attention to now being one of the success stories, where that 'urgent' response isn't needed. Your care providers are still watching your daughter and you. As cancer patients, we're always waiting for the other shoe to drop, we can't believe our own good fortune and our body's ability to be healed.
Your daughter's needs are being met. There will always be the "what if's" floating in the back of your mind. The cough and the x-ray, in the beginning she was probably on chemo and her immune system was depressed making her exceptionally susceptible to infections, so they had to stay ahead of the game. She's not there now. She's not on chemo. She can sneeze and it's an allergy or a summer cold. It's only natural to be concerned as her family, to want that constant vigilance by everyone. But they can see beyond where you're at right now. They've been down this road to recovery with many kids and even though it's a new journey for each child, the road is very familiar. Yes, there are potholes and other potential road hazards, but that's why she has her routine check-ups. I strongly suggest that you link up with a parent group through your hospital. It will help you deal with the next steps. Also contact the Lance Armstrong Foundation (www.laf.org). They have a survivor's manual that will help you on this journey as well as many other publications that will provide much needed information. They also can provide you local contacts, such as that parent group. Congratulations on your daughter's great health. This is awesome news!!! This is what you wanted to happen. She's more than her disease, celebrate every day, live it to the fullest. Life is truly a gift, the present to be enjoyed. I'm a 7 yr brain tumor "host", I provide lodging for this atypical tumor and am cognizant of all the twitches, headaches, etc. I have great health. I get annual MRI's. And if I need help, my docs are a phone call away. So are your daughter's.
It's okay to be worried, but it's so good to be where she is and to not need the constant care and attention. It's like when she started to walk. How you were so cautious and right there in case she tumbled and got hurt when she fell. Take a deep breath and yell "YEAH!!" Again, congratulations and prayers for continued great health.

I dont understand why the bed side manner would change in the staff, that is kinda odd. I think it is something you should mention to the head nurse or head of the department. Severly ill or remission, your daughter deserves the same kindness from all.
AS for her blood count and vitals, they do watch. These are important keys to how she is progressing and are monitored. They will check less as they see the threat decrease, but they are watching. Though if you happen to notice any change in your child, it is important to mention it to her dr. If they seem to disregard it, mention it again before the visit is over (also never hesitate to call). I have had to do this a few times with my daughter. She has had the same doctors for years, and I have noticed that usually when I mention something it doesnt awalys register. Usually they are focused on the task at hand, just approach it again. I have said somthing like " So you dont think her cough is anything to worry about right now?" or something like that.
I too have a daughter with health issues and have been down a simialr road. It is so heartwrenching. When they have restrictions lifted you still find yourself watching over them like a hawk, no matter how long they have been in remission. My daughter is 9 in a few days, and hasnt had a seizure since she was 6. I still watch over her more than my other kids when they were her age. They still watch her weight, all vitals, blood workups (every 6months) scans, everything. Any new problem or headach they look into and let me know if it is anything that needs further testing or change of meds. I guess my point is, nobody knows your child like you, and you are more likely to notice something odd or slghtly off. No matter how silly you think it might be, mention it to her doctor, and get an answer. Communication with her doctors is crucial for you, your child, and staff. Someone below mentioned getting a mentor, that is a great idea!

Hi Katharine,

Your note struck a cord with me. I'm the mom of a cancer survivor. My son was diagnosed with Rhabdoid Tumor of the Kidney almost 4 years ago. (He is 3+ years post-treatment and doing great).

I found that learning how to advocate for my child in a hospital setting was a significant challenge. Early on I feared that I would tick off his treatment team if I was too demanding. (The first couple of days at the hospital I was afraid to hit the nurses call button unless it was a serious issue….I was afraid to bother them... too funny). After I learned the ins and outs and the whos and whats of Children’s, I decided (along with my husband) that it was my job to make sure that my son was getting the absolute best care possible. If we weren’t comfortable with something, I spoke up. If we didn’t like a nurse that was assigned to my son, I asked the charge nurse to make a change. If a caregiver didn’t clean their hands when entering the room, I immediately asked them to do so. I asked every question of his treatment team and made sure that nothing was overlooked. I know that at times I was pushy, demanding, and protective, but that is OK. (My son beat incredible odds and is still alive. (RTK has a survival rate of 23%)).

You are a primary member of your daughter’s treatment team and her best advocate. You know your child better than any doctor or nurse. If you think something is being overlooked or you are not comfortable with the level of attention she is receiving, speak up. Expressing your concerns will give your daughter’s doctors and nurses an opportunity to explain why something is not being done now that was done then, as well as how decisions are being made. If they have in fact become less vigilant, your questions will prompt them to get back on the ball. If this doesn’t help, bring your concerns to the attention of the hospital administration. (If your daughter is being treated at Seattle Children’s, you can provide express your concerns via the hospital’s e-feedback form. Here is the link: http://www.seattlechildrens.org/home/patients_families/fa... ).

It is wonderful news that your daughter is in remission! Good luck with her final weeks of chemo.

Take care,
K.

P.S. Weeks after my son completed treatment, my father was diagnosed with non-Hodgkin’s Lymphoma. I found that I had to do more advocating for him than my son….so it doesn’t matter if it is a child or an adult….every patient needs an advocate.

Dear Katherine,

You're the mother. You have very strong, powerful, and legitimate instincts. You are correct to follow them, and protect your child, especially in the instance of her very necessary medical care. If the doctors and other care-givers are not stepping up and fulfilling every part of what it takes to care for your daughter, then it makes total sense that you can just feel it.

And I think you're right, just because things are going better (which of course, of course, is the best, most wonderful and amazing news!!), doesn't mean you don't have to keep giving the most excellent, and vigilant care. Be on the lookout for things, keep your eyes, still, wide open. I mean, hello, they're doctors. They're not "on a break", just because of remission. They shouldn't have to be reminded of that. But, maybe they do.

With doctors, trust is key. With my primary care doctor, I trust her so much, I kept going to see her even after I moved a ways away from the town she practices in!! Do you have someone in the office that you trust the most? Can you find a moment where you can ask to talk? Then just find a way to break in to a talk about it, hopefully in a fairly non-confrontational way, like you said, "not in anger", and make your concerns known, and see how things go?

I wish you, and your whole family, most especially that precious little girl, all the very best. I know that talking to those doctors can be nerve-wracking. (they're just people just like us, too, though...and they're there to work for you, to take care of your precious baby girl. Let them know what you need. It's OK.)

Hi KS,

Wow, a lot has happend in the past four months, from diagnosis to remission . . . amazing! Do you have a nurse case manager from your insurance company? If not, call them and tell them that you want one. A case manager is someone whose job is to oversee the care plan and be an advocate for you/your child making sure that the necessary items are done and that unnecessary things are not. We just graduated from the case management program with my youngest as his heart transplant was almost four years ago but let me tell you, the program was well worth it.

Tell your team how you are feeling and ask them what to watch for now. You could also get in touch with a local support group to talk to other folks who have been there. Now that you're in remission your status has changed from crisis mode that you were in at diagnosis but your emotions haven't caught up with it all yet because you probably haven't had time to process everything that has happend so far. If you talk to your team, get a list of things to watch for, find a support group, and maybe get a case manager then you'll have the right things in your toolbox to advocate for your daughter.

That said, you have a right to be fully aware of the treatment plan for your daughter and to understand why things are being done or not done. If you feel that something isn't right continue to trust your instincts and figure out what needs to change to make you feel better. Keep asking the team for "the plan" and you'll make it through.

Best,
F.

KS,

I fully agree with you and I think this decline in apparent consideration and bed side manner may stem from frivolous lawsuits.

Doctors are nearly paranoid of malpractice lawsuits so they order tests that may or may not be needed just to CYA. And that bit I saw on the news recently.

Melissa

I think you are confusing "lack of care" with the fact of your daughter is in remission and less care is needed. Your daughter is in the healing process and you need to transition into a healing process as well. You need to slow down, let her heal. Think of it in this way.. If she broke her leg.. rush rush to ER, surgery, casting, then.. home on your bum resting. I think your still in the rush rush mode and you need to sit on your bum and rest. Enjoy the remission and don't stress about sx.. that is the doctors job and yes they do care. I will say though - just do your part (routine blood testing) - all MD's have to review it and sign off on it. If something shows on the test - it will be noticed/addressed.

Enjoy you daughter and Relax.

DO NOT be afraid to express your concerns to the doctors and staff. One thing I have learned is "Call them on their care" and don't be afraid to ask for what you want. If you don't ask chances are you won't get. I remember being in the hospital a couple of years ago with bronchial pneumonia and there is a treatment that helps excel the process of getting better (I feel anyway) and after a couple of days I began to wonder why I wasn't being given the treatment..I told them I wanted it and they knew exactly what I was talking about. With in 3 days I was feeling better and was able to go home. (it is a machine....now hand held......that they use to vibrate on your back on your lungs and it loosens the mucus) Like I said, call them on it and tell them how you feel and why. What are they gonna do? Take away your birthday?....I am 46 years old have 3 healthy boys and I have Spinal Muscular Atrophy 3..(SMA3-Muscular Dystrophy)I was also on the advocacy committee for ALTCEW (Aging and Long-term Care of Eastern Washington. Feel free to email me if you have any questions and I will do my best to answer any questions you might have.