From the inside…

In this installment, we will focus on the parents. Just like last time, some of this may be a bit off putting, but these are from having been in this situation and not just us. This comes from other parents and those who have worked with countless families. Everyone is unique and no one has seen it all, so some of this may not apply directly to your situation. We have tried to cover a large area of several topics with just dabbles in each. Above all, this should give you some things to think about as you go through this painful journey that hopefully will make it a little less stressful.

Probably the hardest lesson I personally had to learn was to let others help. We were blessed in that we had all the help we thought we needed. Wylie is a St Jude patient and has had wonderful medical insurance so most of the medical bills were paid. Amanda was able to work, and they were just phenomenal in helping us get through this. Wylie was receiving wonderful care. It felt bad to take gifts or charity as we knew there were others who didn’t have what we had. We said “no” to a lot. What we didn’t realize is that by saying “no” is that we were taking away a blessing and robbing others of theirs. As we talked last time, many people don’t know how to respond when their friend or family member says their child has cancer. Most want to help in some way. They just don’t know how or what is best. How can they as every situation is different. They may want to buy you a coffee or help pay for something or give your child a gift. We can’t say this enough, let them! If you don’t, they may feel unwanted, even more helpless, or even worse that you may be ungrateful. You may not mean it to come across as that, but remember you can only control how you respond. That is their way of helping, and if it doesn’t happen you are robbing them of feeling helpful. The blessing of love and friendship may also start to vanish.

During treatment, you will come across several other families often facing some of the same cancers. This, however, isn’t the time to do comparisons. Just because your child may have the same type of cancer, treatment regimen, and be of similar age, it does not mean that your child and their experience will be the same. There are so many variables involved in treatment that outcomes are extremely difficult to predict. Some kids go through all of this without any major complications. Others stay sick the entire time and some unfortunately do not make it to the end. When comparisons come into play so does jealousy, expectations, and sometimes disappointment.

This one isn’t as simple as it sounds, but you need to hear this. This isn’t your fault. One of the primary roles of being a parent is to protect your child. We can protect them from many things, but this isn’t one of them. Most cancers arise from cells constantly dividing as your child grows. Sometimes they don’t split as they should or something somewhere in all those genes gets turned on. There have been numerous studies covering this topic. There have been some known causes such as certain chemicals, ionizing radiation, metals, etc, but the vast majority of parents do not actively expose their children to these and at that on purpose.

The moment you hear the diagnosis everything changes. From that point on especially during treatment everything will continue to change. Some treatments last a few months. Others can last years. Regardless, while it is going on, don’t get used to planning anything. During chemotherapy, the “schedule” is dependent on cell counts. As time progresses, responses slow. Infection and illness can and more than likely will happen. That four-week schedule can become six or eight. You can be taking a 3am car ride to the ER. It is good to have plans, but keep in mind also that they will change. Again, there is just so much that is unpredictable.

On a related level, sometimes treatment can take a while and not everything is set in stone as they say. There are very few things in medicine that have absolute timings. For instance, you may be told to take a certain medication every four hours. More than likely there is a window around that four hours, so it doesn’t have to be exactly 14,400 seconds from the last dose. What I am getting at is that there can be some delays. Your child may not be the only child receiving a certain treatment that morning. The hospital you are at may be treating several kids with all kinds of illnesses. Your floor or clinic may even be short staffed. Your child may get his/her treatment at a different time than before. Does that change the outcome? It is highly unlikely that it will. You can discuss concerns you may have over this with your oncologist but getting upset that it is 8:05 and your child hasn’t received their 8 o’clock meds doesn’t help anyone. If it is one of those things that has to be exactly on time, they will take care of it.

Another hard lesson and the one I will end up on is asking for help. We have seen a lot of parents go through this thinking that this is solely their problem. This is overwhelming. It’s a difficult task for anyone. There is no shame in asking, and I am willing to bet there are a lot more people willing to help than you can imagine. Sometimes those you least expect can even help the most. If the first person you ask can’t help, ask another person. You may need help with small items like finding some appropriate clothing for your child while they have an access all the way up to dealing with depression. There can be difficultly in determining when you need help as well. Regardless, you’re going to need it at some point. In a future discussion, we will discuss on how to recognize early signs of depression and some resources available no matter where you are.

In a couple of weeks, we will cover some ideas that have helped us and other couples navigate through this journey together. No matter what you may have been told or seen in movies, this does and will place a burden on your relationship with your significant other just as it does with other relationships. We will finish out with some testimonials submitted to us from other parents on how everything has changed for them. Thank you for joining us in these discussions.