Day 60 - FAQ

     It's been a slow day at the hospital, but I wanted to provide a health update for those following along closely at home.  Evan is doing fine and continues healing up.  The doctors are starting the reduction in morphine (again), all of his antibiotics are removed (again) and the CT scan was pushed back until later this week.  His next spinal tap will be Thursday and while under they're likely going to replace his PICC due to a clot or kinked line.  He has not had a fever since last evening, however I'm fully expecting we'll see more over the coming day or two.  The source of the fevers is still unknown.  Evan is stable and the doctors simply want to monitor the next 48 hours and see where we're at before doing any more discovery or making any changes to his drug treatments.

Acting nutty before bed.

     With today being a quiet day I thought it might be a good chance to add some human emotion to the blog and give people a different point of view on things.  Up until now I've been rather tight lipped about my feelings.  I'm sure Cristy is fairly similar to me in many regards, however I don't want to speak for her or put words in her mouth.  These responses will all be mine.  If you're only here to get an update on Evan's health status then I bid you a fond adieu....

FAQ (Frequently Asked Questions)

     The content below is the questions and comments we get asked most often - and my general thoughts on said comments.  One more disclaimer here; some of the responses below you've likely seen in other blog entries or heard from me in person, so I apologize for any repeat material.

One of the koozies I had made based on Cristy's golden ribbon design.

1.  How did you find out that Evan had leukemia?

Evan had been experiencing fevers back in May - June and after our third trip to the pediatrician the doctor noticed him grimace hopping off of the exam table.  Joint pains are a common symptom of many things, leukemia being one of them.  Upon seeing this the doctor ran blood work and this set us off on this life changing journey.

2.  Did you catch it early enough?

The interesting thing about leukemia is as long as it hasn't spread to the lymph nodes or spinal fluid there's not much more damage it can do.  Purely focusing on the blood the worst it can do is bottom out your white blood cells, platelets and hemoglobin.  I've said this to many folks in the past, but leukemia has never killed anyone, it's the infections and complications from lacking these important cells that causes death.

3.  Are the odds pretty good Evan can beat it?

I really considered not putting this question in here for superstitious reasons, however that would be disingenuous since it is a question we hear often.  There are many factors that come into play with leukemia, particularly in children; age, whether the leukemia cells have moved into the spinal fluid, what type of leukemia it is and markers and proteins in the blood.  The first phase of chemotherapy is called Induction and it's purely meant to put the affected into remission.  Afterwards a bone marrow test is done to check for the proteins, enzymes and other building blocks that form leukemia cells.  You may recall me mentioning it in a previous blog.  This test yields a Minimum Residual Disease (MRD) score and a risk profile that details the likelihood for long-term remission.  From there the rest of the patient's chemotherapy plan is based on whether the person is high or low risk.  I won't give the percentages for Evan, I'll only say he's considered medium-to-low risk at this time.

4.  What happens if the cancer returns?

In the event that there is a relapse Evan would undergo another round of much harder chemotherapy.  Larger doses, more concentrated, different drugs.  Long story short it is much harsher on the patient.  If that too failed to rid the body of leukemia he would need a bone marrow transplant.  The donor most likely to match Evan's bone marrow would be his brother Nolan.

5.  How are you and Cristy holding up?

We have good days and bad.  What seems to help me is focusing on the phase of chemotherapy that we're in at that time.  Working with the medical team on the game plan for that particular day allows me to concentrate on the task at hand.  I've found that if I start thinking about the future, the what ifs, it really is counterproductive.  I've resolved myself to the fact that for the next three years I likely won't sleep well, but as long as my son continues to battle and make progress each day it helps my disposition tremendously.

6.  "I don't know how you do it, I couldn't do it."

Yes you could.  Everyone could.  I've had this conversation with a few close friends, most recently this weekend with my buddy Chris.  To him and anyone else I say you absolutely would rise to the occasion.  I explain it like this.  You receive the news and naturally you're devastated.  You cry and rationalize it the best you can.  You can grieve all you want for as long as you want, but guess what?  Your loved one still has cancer and needs your support.  I'm confident that given the same circumstances once each person accepted this fact they'd put a plan together and all their decisions would be in the best interest of their loved one.  Personally I want to be strong for my son so he'll keep fighting during his most difficult times.  This experience has taught me that when put in strenuous situations people will rise to the challenge.

7.  How long is Evan's treatment plan scheduled?

Evan will undergo chemotherapy for the next three years.  For the first six months the drugs are varied, quantities vary, timing/frequency varies.  After that he'll enter into the phase called Maintenance for two and a half years.  This involves once a month treatment to keep his bone marrow healthy and to prevent the cancer from coming back.  One fact that I found interesting is a girl's plan is only two years in duration.  Females have a slightly lower relapse rate.

8.  "How can we help?"

Let me start by saying this whole experience has been eye opening for a number of reasons.  My faith in man has been restored.  There are so many volunteers, hospital staff, councilors, clergy, family and friends who have reached out to us and helped us.  This has been inspirational to me and makes me strive to be a better person and one day pay it forward.  At this time Cristy and I are evaluating the cost impact to our banking accounts with our hospital social worker.  Donations are a slippery slope because of the tax and financial aid ramifications.  We truly appreciate everyone's thoughts and prayers and that is all we ask for.  Evan is blessed to have so many people, near and far, pulling for him to make a full recovery.

9.  What limitations will there be on Evan during chemotherapy?

During the first six months I suspect we'll handle him with kid's gloves.  I certainly won't be pushing for him to make a quick return to school.  Any activity that could leave him vulnerable to physical injury will likely be out of the question.  Once we're in Maintenance the doctors assure us his blood counts will recover to an acceptable level, his hair will grow back and he'll be able to resume a fairly normal lifestyle again.

10.  Are the past two months typical for most leukemia patients?

No.  Evan has pretty much hit on the majority of the side effects from most drugs.  In addition to that he's had a difficult time clearing the infections he developed during his nadir.  We've spent the last month+ clearing these infections and the side effects from the medicines he's been on for pain management and chemotherapy.