In our 15 year medical journey with childhood cancer and serious related care, there have been so many times I’ve wanted to just scream! OK, maybe I have screamed a few times. And now that I think about it, I probably should have screamed a lot more just to get it all out. Of course, the actual medical concerns, treatment and care are awful. You are worried sick about your child. The logistics surrounding it all, however, are a frustrating (and huge) insult to injury.
Let’s see. What can be complicated? Finding doctors. Finding doctors covered by insurance. Finding good doctors you feel comfortable with. Finding doctors familiar with the complex situation. Actually getting appointments. Obtaining all required medical records. Figuring out payment issues. Dealing with unusual medical situations that insurance decides to question. Needing care with multiple doctors in multiple states. Facing travel, lodging, and new surroundings. Getting prescription refills. Getting prescriptions authorized. Many many many problems with prescriptions. Getting call backs from office staff. Figuring out second opinions. Understanding the complex medical jargon and serious consequences. Balancing different medical opinions. WHAT IN THE WORLD??
This list could actually go on and on. Not to complain too much, but side complications continue to pop up and it’s maddening. I just want to focus on my son. I want him well. I want to help him more than anything in the world. With serious medical care, that’s the primary focus and it’s the ultimate thing that matters. Unfortunately, all of the complicating logistics become the unwanted requirements of reaching that goal.
I’ve been thinking a lot lately about these things. This year, we’ve spent 7 months focusing fully on ways to help Jake manage severe pain and physical limitations. In addition to feeling terrible, his life has been on hold during the quest. We’ve seen doctor after doctor, three states, all with different suggestions, all with serious risks. Several surgeries have been recommended. Each one is a new surgery, never before performed. None are fully covered by health care insurance. While we worry and fear the possibilities and right course of action, we have to maneuver complex payment issues, reviews, out of network situations and denials. We have to seek subsequent diagnostic care and track down full medical records (harder than you’d think). We have to balance competing surgical and non-surgical recommendations. Meanwhile, multiple required medications create concerns. There are difficult side effects, increasing tolerances, refills needed but not forthcoming, and the biggest slap in the face — a medicine that would definitely help one issue is directly linked to Jake’s cancer and must be avoided. We are simultaneously trying non-surgical treatment options because those are the safest alternatives, especially in his current situation. There are a lot of choices out there. Unfortunately, most of them require weeks or months of effort before any positive result is achieved, if ever. You keep trying it all, hoping something will work. Meanwhile, the costs pile up and you don’t know if you’re actually getting anywhere. So far there has been no miracle cure. A few things have helped a little, but nothing has reached a level that can truly improve quality of life in terms of pain relief, better mobility, etc. So now what??
We continue the fight. We research and try new approaches. We pray and attempt positive moods. (I personally try not throw phones across the room when nothing seems to be going right. Thankfully I’ve held back so far! I have a very calm demeanor so you know things are truly frustrating if I have reached this point.) With all of this, is there anything helpful that we’ve discovered? I’ve stumbled upon some practical things to keep in mind that have made things easier. Hopefully they can help you too.
- Support. Talking with other people who live in this medical world is hugely helpful. The feeling of not being alone absolutely provides strength. I am forever grateful to a fellow cancer mom who invited me to a relaxing and fun dinner with other cancer moms. Sharing stories and feeling that overwhelming support meant the world to me. So many people face this difficult medical arena and it’s somehow comforting to realize that fact. People conquer these complexities all the time. That means you (we) can do it too. It’s helpful to connect with people who truly relate to the situations that arise and often have insight that proves useful as well.
- Medical Ally. I recently discovered that having a medical ally can be helpful. This can come in many forms, but we’ve signed on with a trusted physician who will help manage some of the arising issues as Jake’s “concierge-type” doctor. It’s such a relief knowing we have someone to call when problems occur. Additional costs are a huge concern with expense after expense piling up, but fortunately his rate is reasonable and the peace of mind is worth it’s weight in gold these days.
- Keep a list of medications on your phone (or somewhere handy). You’d be surprised how often you’ll need to reference them – and with exact dosages. I’ve started taking pictures of prescription bottles, kept in a phone folder for easy reference. Since it’s on my phone, it’s always readily available.
- Don’t resist calling doctor offices. It’s important to feel comfortable calling and re-calling when medical staff does not call back or follow up as promised. My original approach was to be overly polite and patient, but I eventually realized this just prolongs things which hurts my son – and builds up frustration which is bad for everyone. I still proceed politely with the staff, but I do continue to call until the problem is solved. Sometimes that’s the only way to move things forward. As a side, it can be helpful to take note of the staff members and nurse’s names that you may need to call upon.
- Ask for a handicap pass. When your child is in pain and daily outings are difficult, it’s best to ease that burden in any way that you can. Most doctors are happy to sign the paperwork for this. I was so nervous to ask the first time, but it was no problem at all. Just print the form off the DMV website and bring it to a treating doctor. Return the completed form to the DMV and you’re all set.
- Make the most of appointments. At the doctor visits, take notes, ask for spellings of words or further explanations if needed. Doctors will often try to rush you; don’t let them if you need more time. I do try to be understanding. I know they are busy and deal with serious situations. But it doesn’t help anyone if you leave feeling uninformed or unprepared to proceed.
- Don’t be afraid to talk about the medical situation in general. I’ve learned many things from strangers, acquaintances and friends alike. You can get a lot of ideas, options to try, things to avoid, or just general information to weigh with what you already know. It’s been incredibly useful talking with other patients and caregivers, not to mention the sense of camaraderie through tough times. Of course, there are times that you’ll feel completely overwhelmed and it’s perfectly fine and understandable to shy away from seeking more information. There is a time and place for this and you’ll know when it feels right.
- Know that prescription costs can vary. Oftentimes, a certain prescription is denied by insurance and the price quoted is completely outrageous. If you do some research, you can often find cheaper prices or discounts. One of the best sources is GoodRx.com. Be aware also that prices can differ by state. A compound prescription cream was quoted at over $2,000.00 (for a monthly supply) in the state of Virginia and insurance refused to cover it. After months of searching, we found a supplier in a different state who only charged $81.00. Now my son is finally able to try a simple, non-invasive pain relief option that seemed unattainable for a long time.
- Appeal insurance denials. Oftentimes insurance companies will deny certain treatment options and you feel out of luck. Know that this isn’t always the end of the story. You can and should have the physician file an appeal explaining the medical necessity of the care. It can take more than one appeal, but ultimately approvals can result. Doctor offices are familiar with this so don’t be afraid to ask. (Although you may have to call and call again as mentioned above).
- Stay at hospital hospitality houses or the Ronald McDonald House. We didn’t stay at Ronald McDonald for several years even though most treatment took place in New York and we lived in Virginia. As time went on though we finally booked with Ronald McDonald and I wish we had from the beginning. I learned that they are rarely full when you schedule in advance (arranged through the hospital) and if they are full, there are agreements with local hotels for very discounted rates. Not only is this extremely helpful when juggling a lot of additional medical expenses, but the love and support at Ronald McDonald cannot be overstated. Everyone is there because a child is facing serious medical care. Everyone is kind – from the staff to visitors to patients and families. There are therapy dogs, free community meals, 24/7 free ice cream (my son loved this), activities and more. It’s a special place and I highly recommend looking into it.
- Check with employers about insurance liasons. Not all companies have this, but often places of employment have benefits personnel that can help when insurance issues arise. This is especially true with larger organizations.
- Read coping books. I’ve said this in past blog posts, but there are a lot of books and articles out there that provide practical advice and support. I found that the best book for our personal situation is called Living With Childhood Cancer. It is full of incredibly useful information, especially helpful at the beginning of our journey. I do have several copies of this book if anyone reading would like a free copy. Sometimes it’s just nice to be a little more informed. It’s a confusing and frazzling time. Clear information is great.
- Seek second opinions. Doctors will not be offended if you do so. It’s fairly common these days, especially when a treatment option is intense or has many potential risks or side effects. When all is said and done, you will feel relieved that you explored all options, especially if things don’t go as planned.
- Understand the risks of treatment. Ask and go into detail about all the risks of the proposed medical care. I’ve been in the situation where I was so excited and hopeful for a positive result that I payed little attention to risks and did not fully question what could happen. I’ve regretted this decision and wish I could change it to this day. Do yourself a favor and explore everything.
- Pay attention to controlled substance prescription refills. Pain medications are highly controlled and monitored substances. There are strict rules about prescribing them and it’s not easy to get refills or help if your treating physician is unavailable due to vacation or weekends or emergencies. This can be a nightmare. Going without certain pain medications can cause serious withdrawal symptoms. Be sure to note when you will run out and confirm that you have access to refills. If not, connect by telephone or secure an appointment with your treating doctor before you run out. Other doctors will be very hesitant to help you, even doctors who have known you and your medical situation for a very long time. Also be aware that transferring these prescriptions out of state will have different laws attached. Check into those rules if you find yourself changing states.
I am certain there are many more survival tips and if any come to mind, please let me know. I’d love to add to this list. I wish you or your loved ones the best of luck in navigating the medical world. Hopefully you won’t encounter problems along the way, but it’s always best to be prepared to improve the odds. Stay strong and know that so many people out there care – including me!