Answering Questions

Since Chase’s most recent evaluation, we have received quite a few inquiries which have led us to compile a list of frequently asked questions.  Feel free to tack on other questions in the comment section at the end of this post.  Our hope is that this assists in both the understanding of Chase’s treatment and gives a small window into the life of a pediatric cancer patient (a world in which Chase is one of way too many).

1. Why does Chase still need chemo if the cancer is gone?
This is probably the question we hear most often, and here’s the answer.  The scans showed that the tumor deposits are gone and while they don’t see any more tumor or cancer cells, he isn’t considered “cancer free” because there could be more cancer cells free-floating that just haven’t manifested themselves at this time.  And even if his body was completely cancer-free at the moment, this is a vicious, virulent cancer known to recur in the first 18-20 weeks after diagnosis.  Think of it like a weed in your garden or yard: not only would you pull out the weed that you see, but you would also desire to make the ground (via a weed killer or the like) as inhospitable an environment as possible for the growth of any further weeds.  Think of this stage of chemo as both an errant weed killer and a future weed deterrent.

2. How much more chemo does Chase need?
The chemo schedule (or “protocol“) that Chase is on calls for a total of 51-54 weeks of chemo.  At this point, he has completed 17 weeks or cycles (it’s actually been closer to 20 actual weeks that have passed as his earlier chemo dates were often slightly delayed by his fevers and low counts).  He will probably complete his chemo regimen around the first anniversary of his surgery and diagnosis.

3. Why does Chase still get fevers and need blood and platelets if the cancer is potentially gone?
Chase still gets fevers and needs transfusions because those are side effects from the chemo, not the cancer.  And yes, it is harsh… but dying of brain cancer would be more harsh.

4. Can this kind of cancer spread?
In a manner of speaking, yes.  For more technical information on this, I’d highly recommend checking Wikipedia’s AT/RT link.  In laymen’s terms, I can tell you that AT/RT has rarely been seen to spread beyond the brain and spine.  On occasion, it does move to the kidneys, but that usually only occurs with the genetic form of the disease.  Hence our flying Chase’s tumor to Boston to be studied by a geneticist and having his kidneys checked (it was concluded that Chase does NOT have the genetic form of AT/RT).  Could he possibly be at a heightened risk for more cancer and other cancers in his lifetime because of his AT/RT?  Very probably.  But it’s not happening today, so we’re not going there today.

5. Chemotherapy vs. Radiation?
In Chase’s case, he needed both.  His protocol calls for a chemo induction, then a reduced chemo schedule during radiation, and pending a good evaluation, a slightly reduced chemo schedule for the duration of the 51-54 weeks.  Evidence suggests that they have not had success curing AT/RT without some form of radiation.

6. Does Chase understand cancer and his diagnosis?
Chase understands that he doesn’t feel well and that there are all sorts of things that have to happen to him, but he has no paradigm for words like “terminal” and “malignant.”  Not only is he just three, but he’s probably suffered some memory damage, so it’s actually a little unclear on how much of his life he even recalls before his diagnosis.  To him, being in and out of hospitals is just a way of life.  In fact, he loves his hospital because he’s a bit of a big deal. :)

7. What does Chase eat?
Nothing.  Many of the chemo drugs give him nausea and a couple of them give him painful sores that can go anywhere from his mouth to his esophagus and even intestines.  Early on in his treatment, Chase was put on an IV nutrition system to ensure that his body maintained nutrition, weight, electrolytes, sugars… all the essentials needed to survive.  As of today, Chase is attached to a bag for 16 hours of every day.  He does at times put a bite of food in his mouth, but usually spits it back out. 

**Sidenote: Chase “attaches” to the bag through his central line – what is basically a surgically inserted tube into an arterial vein in his chest.  The tube splits on the outside of his skin so that there are two lumen (or small hoses) through which he can be “accessed.”  When he is not accessed (meaning the tubes are not in use), they fold up neatly into an ace wrap that covers his chest.  This is the site that needs the dressing change every week.  Because of this, Chase is at increased risk for things like infection and pulmonary embolism.  However, the benefit is that he is virtually “needle free.”  All labs, chemo infusions, and most medications can be administered in his line which is such a blessing!  For this, we are more than happy to figure out the no swimming, no bathing, “carry a crash kit everywhere you go” lifestyle of a small child with (in his own word) “tubies.

8. Does Chase sleep?
The answer to this question is multi-faceted and best-answered “at times.”  The chemo and (especially) radiation have highly affected his sleep patterns so he suffers from disturbed sleep.  Every night is not created equal.  Some nights, he’s up only a couple of times, and others, it’s every 20-30 minutes all night long.  For now, there are two things we know about this issue: it’s almost guaranteed to happen every night and, per a word with his attending oncologist, doctors have seen sleep improve greatly when chemo is done. 

9. What are the long-term effects of this cancer and the treatment on Chase?
This is a question we don’t have verbalized to us very often, but I think it’s one that everybody considers, so I’d like to try and address it a little even though it’s hard to define at this particular moment.  We know that due to the tumor placement and size, there was most likely some brain damage, especially in his memory center.  Not so much like amnesia; more as in damage that will cause him to struggle to make memories in the future.  We also know that a couple of the chemo drugs Chase is taking could likely damage his heart and his hearing.  This is why he gets (and will get for the rest of his life) scheduled EKGs and hearing tests.  In fact, we have already seen small evidences that his hearing is changing.  Lastly, we know that the radiation (even proton radiation) is known to cause brain damage and stunted spinal growth (not in all cases, but Chase had his whole brain and whole spine radiated).  This is at times hard to discuss because many of these potential difficulties to overcome are based on our treatment decisions and are (at this moment) hypothetical.  What we know right now regarding Chase’s future is what we’ve always known to be true: our hope and joy come from God alone.  I so love the phrase coined by the mother of another brain cancer patient: “Defined by God, not by cancer.”  So we will meet and undertake each new facet of Chase as it becomes apparent… moment by moment.

I believe that it is very easy to get overwhelmed by all these definitions and descriptions.  In fact, I get a tightness in my chest every time I list all these things we do in a single day and all the life-time implications they hold.  With this in mind, let me end these questions and answers with a reminder–to myself and to any and all who read: Chase was designed this way by God.  God has–in His all-knowing, perfect and loving mind–designated cancer as the awful yet awesome refining for Chase and, by extension, our family.  We will consider it joy then, because we will someday see Jesus, and be perfect and complete (James 1).  And in whatever life God has for Chase, we see promise because we know that he has been fearfully and wonderfully created by a God who loves him more than we can fathom (Psalm 139).

Moment by moment.

7 responses to “Answering Questions

  1. (sorry this is in caps- for some reason they won’t let me leave a lower case comment! I’m not yelling…lol)

    Here’s a question- how much about chase’s condition do the other kids understand? and what does day-to-day life look like for them during this time?

    we love you guys and are praying for you all!

  2. ok fine, it’s not actually in caps- well it was when i typed it! now it just doesn’t have any punctuation… weird!

  3. I was wondering the same thing about the other 3 kiddos. I know they see chase’s routine and what is needed to take care of him, but do they know what cancer is and the effects of it?
    has it been hard for you and bob to really be able to spend time with the other three, as you’re time is very consumed with Chase?
    Still praying for you and all of these things. We know that it must be difficult to still get good one-on-one time with all of your beautiful kids.

    • Steph and Tiana – that is a really good question. I think the best way to define it is that the kids understand that Chase’s condition is life-changing, not necessarily life-threatening. Most of their stress comes from the daily differences in our life-style. We have prayerfully chosen to not dwell on the terminal nature of the disease with them as we aren’t sure at this time that it’s a burden they need to carry. What we have stressed to them is that they can come and talk to us with ANY feelings or questions at ANY time. In terms of finding special time with the other three, we have the most amazing support network who helps in a myriad of ways – both freeing us to focus on the kids or focusing on the kids when we have to work more specifically with Chase. In short, this whole thing is a huge group effort empowered by the Spirit with lots and lots of GRACE. :)
      Does that answer your question?

  4. Well I can relate. Platlets so low all the time on his 4 year journey, Coleson was 3 1/2 and has lots of NO MEMORY as the Dr’s explained to D, C, Ken and myself. Doesn’t remember the 1st week of diagnosis yea for that, such a sick little boy!, Loosing his hair, the pictures just let him know, had the sores in his mouth so couldn’t/wouldn’t eat, but Steroid week, Yikes , look out, would eat anything and wanted it NOW!!! many wakes up in night, screaming for food, special food he CRAVED, we all pretty much had it figured out and had things in our refrig to please him, Grandpa Ken had to go to McDonalds (only grandpa too)one night at 10:00 P.M>and get the sandwich in the YELLOW wrapper. Many stories.He had the “warts” on his feet so bad times he couldn’t even walk, when Grandpa Ken passed he was in a wheel chair that week, many treatments and nothing worked, then as he wasn’t on Chemo and Radiation they just “fell off”. Scary huh? 1 Peter 3:15, “Always be prepared to give an answer to everyone who asks you to give the reason for the HOPE that you have”.

  5. Bob and Ellie – Ellie, I haven’t met you, but I have been following your blog and praying for you all. This FAQ was really helpful. We are in Kenya right now and others are praying as well. We plan to be in the US April – September and would love a chance to visit with you all!!

  6. I think we may go to the same hospital, I heard of you from Adair when I got my haircut a couple weeks ago. My 3 yr old son was diagnosed a month ago with a tumor, and we started chemo this week. What are your normal chemo days? Are you typically at the hospital for them, or does home health come to your house? We are going next this Friday morning, barring no fever. Tentatively reaching out. Not wanting to overstep, but interested in meeting you, if we are going to be there at the same time.

    Feel free to email me if you feel up for making a new friend. If not, I totally understand. I am so new to this world, and don’t know how to navigate it all so gracefully.


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