Thursday, February 5, 2015

Forward, Some "Real" News

Mark is rapidly improving over the past few days, especially his eyes, but he is still having some issues with coordination.  We try to keep someone near him all the time when he is moving around, because the very last thing we need right now is for him to fall and clobber his head.  Still pretty sensitive there, still some swelling, and all that.  But, he is home, and his mood is solid.

Mark's new favorite joke:

[Darth Vader]: Luke, I know what you're getting for Christmas.
[Luke Skywalker]:  Nooo!  It can't be, how could you know?
[Darth Vader]: I felt your presents!

So, we have been continuously awaiting the oncology report for a long time now.  Samples of Mark's tumor were sent off to various places like the Mayo Clinic, Johns Hopkins, and others.  The local pathology at Randall Children's and Emanuel eventually concluded that they weren't really fully sure what they had and wanted to wait for the other places to report back.  Originally we were supposed to sit down with Oncology during Mark's stay to discuss treatment options, but this delay pushed that appointment beyond Mark's stay, to tomorrow (Friday the 6th).  This afternoon, Oncology called again with some answers and some more delays for info.  So, at long last, here is what we know.

Mark has what is known as a Pineal Parenchymal Tumor with intermediate differentiation.  Before you go googling that, I will try to summarize the high points that we know.  In one sentence: It is ridiculously rare, and while it is still a bad cancer to have, it is not quite necessarily the short-term horrible doom as previously feared.

Cancers are graded by the WHO on a scale of 1-4 based on rate of growth, with 1's being generally inconvenient and 4's being short-term doom.  The term "differentiation" in the description relates directly to that 1-4 scale, with "well differentiated" being a 1 and "poorly differentiated" being a 4.  Intermediate is the middle ground, meaning Mark's tumor is either a grade 2 or grade 3.

While Oncology had previously been careful to not commit to anything specific so far, we had been getting ready to accept that Mark's cancer was on the 4 end of 3, so to speak.  This updated information informally changes Mark's tumor from what I'll call a grade 3.75 to a grade 2.5 until we hear something more specific.

Data is limited on this type of cancer simply because it is so extremely rare that there is very little case study available on causes, behaviors, and reactions to treatments.  In fact, it wasn't even classified by the WHO until 2000.  Additionally, the information available online from the US National Library of Medicine National Institutes of Health has treatmeant/outcome data on only five cases.  FIVE cases.  This is perfectly in line with everything we know about Mark: Highly unusual, rare, unpredictable.... if you're gonna go, go big and make it interesting.  Mark, go ahead and check that checkbox, mission accomplished.

So..... the delayed Oncology appointment was pushed back again, to next Tuesday the 10th, as the Oncology people try to scrounge together what limited information is out there to decide what to do next.

Regarding the possibility of participating in a clinical trial at St. Jude's, turns out Mark's case does not fall into the classifications that apply to the program we thought he might qualify for.  This means they really don't have anything special available to him, so treatment there would not appreciably be different than anywhere else.

Several of our friends have been sharing alternative ideas for treatment, because it is well-documented that chemotherapy and irradiation causes all kinds of new problems, and the industries built behind these treatments make a lot of money for the companies that make them go.  It would be ignorant to pretend there is not a lobby behind those industries on some level.  Also, the internet is filled with tales of treatments with special devices or supplements and combinations of therapies that resulted in miraculous cures.  Additionally, treatment options for cancer patients not in the USA are often different because they have access to approaches not regulated/approved by the FDA..... and lack of an FDA blessing by itself is no reason to automatically discard a treatment.

Trust me, if there were any way we could confidently treat Mark that avoided chemo and radiation and accessed some of the better-sourced outlier approaches, we would be all over it.  However, while there are in some cases small amounts of data that might merit a closer look on some alternatives, there is essentially nothing on potential alternative approaches for Mark's specific tumor type, because there is hardly anything documented for the mainstream treatments in the first place.  The only things out there with any record of anything improving for Mark's tumor type involve the old standbys, so that's what we're stuck with.  But, the good news is that since we've gone from a 3.75 to a 2.5, the duration and intensity of chemo and/or irradiation are significantly reduced from what we had been gearing up to deal with.  I hate, hate, hate the thought of Mark having to go through this and the damage it may cause, but there just do not appear to be any alternatives that we have any confidence would benefit him at all.

So, good news, bad news.  Mostly sort of good news on the whole, I guess.  Nothing is set in stone yet, more research and determination is under way, so this thing could still slide backwards from "pretty bad" to "horrible" again, so we are not at all ready to relax.  That said, I have no reason to discount that this change could be the result of prayer, and I cannot overstate how emotionally grateful we have been to hear from so many places how many people are keeping Mark and our family in their thoughts.  Still, please keep an eye out for the people closer to your lives as well who have their own trials and need support.  Every single day in the PICU we saw parents whose children had just been admitted for one reason or another, faces tear-stained and shell-shocked.  And for goodness sakes those PICU nurses, I cannot fathom how they manage to come to work every day to see and manage so much personal tragedy and stress, they are simply superhuman and also deserve your prayers.

Until we know more, we'll leave it at that.  Thanks for reading.


  1. I am praying for your family as you navigate this journey you did not choose to be on.

    We are in CC in SC and have been for 10 years. Our son was diagnosed with a rare bone cancer - osteosarcoma - in March 2014 and he just finished his treatment at St. Jude Children's Hospital last month. He is cancer-free - PRAISE GOD! He will still go for scans every three months. Our son turned 18 during treatment so he is quite a bit older than Mark, but they could talk if Mark wanted. Like Mark, Maxwell stayed positive and never complained during his journey. And he also likes Star Wars - haha! Maxwell just spoke to a college group last night about his St. Jude experience (it was a St Jude fundraiser), and he talked about the importance of staying positive no matter what your trial is, and to live your life for God always.

    Please contact me if there is anything we can do for you or if you just want to talk to someone who has been through a similar experience (though everyone's journey is different). My email is God bless you and we pray for COMPLETE healing and restoration for Mark!

    By Beth Ann Bailey — Feb 7, 2015 10:25am

  2. Thanks for the update. Praying!

    By Jeanna Reed — Feb 7, 2015 1:18am

  3. praying and praising God for Mark's progress and his great family.

    By Leslie Alexander — Feb 6, 2015 5:15pm

  4. Since we found out about this site through St Anne's last Sunday we don't have to keep asking about Mark. Appreciate you taking the time and effort to keep us all informed
    Please know that you all are in our thoughts and prayers
    Wayne and Tusie

    By Tusie Hodgin — Feb 6, 2015 3:44pm

  5. Sending prayers and hugs Mark! Keep up the great star wars jokes!

    By Roger Tarre — Feb 6, 2015 8:15am

  6. Our family still prays daily for Mark and all of you.

    By Leann — Feb 6, 2015 12:57am

  7. Unfortunately chemo and radiation are pretty effective against cancers and are still generally the best option. But don't forget about the importance of a holistic approach. Nutrition is super important and alternative therapies like acupuncture and others can help with side effects of treatment and aid in healing the body as well. I pray that all goes well with treatment and that he has a swift recovery. I love you guys!

    By Dawnya — Feb 6, 2015 12:02am

  8. Thank you so much for sharing the information you have so completely and in what is probably the most understandable way to the lay person. You are amazing parents. With God's grace and your common sense analysis, ,if it can be done, you will do whatever it takes. Don't forget to take care of you and family as well as precious Mark. Blessings.

    By Peggy O'Connor — Feb 5, 2015 11:27pm

  9. I am glad for this apparent good news. I know God hears our prayers and that he can change ANY outcome by his will. I know God has heard MANY prayers on behalf of our wonderful Mark and the rest of the family. I look forward to more good news in the future. I am so glad Mark is home with his family and I hope he is having some opportunities to be a little boy instead of having to face so much grown up stuff ALL the time. We love you Mark!!! <3 <3 <3 We love your whole family and pray that you all get some rest now that the immediate crisis is over. HUGS and loves to all of you!

    By Aunt Karen — Feb 5, 2015 10:51pm

  10. I will also continue to pray for other patients and their families.

    By nancy — Feb 5, 2015 10:32pm

  11. I'm glad it doesn't seem to be as bad as we thought. Maybe God will downgrade it even further. I've been praying for Him to dry that stupid nasty tumor up and He can!!! PTL!!! I am glad Mark is feeling better. I will keep praying for his continual improvement. I will also pray for the wisdom and accuracy of his doctors and for his very loving and caring nurses to be doubly blessed. I'm glad he can have a bit more normalcy for a while. I pray his treatments will not be too hard on him nor create any permanent damage and that God fortify him, you, and Wendi with extra strength and blessings. I pray for your whole family to be blessed and to get more rest and to have some happiness and less worrying. I love you all. You are always in my prayers

    By nancy — Feb 5, 2015 10:29pm

  12. <3 <3 <3 to you all!

    By Erin Johnson — Feb 5, 2015 8:55pm

  13. Frank, thank you so much for sharing the good news. I will keep my prayers for Mark at a high level.

    By Jessica Rolfe from CC — Feb 5, 2015 8:38pm

  14. I love you all

    By Love Nana Heiss — Feb 5, 2015 8:31pm

  15. Thank God for this news!

    By Love, Grandma Crook — Feb 5, 2015 8:25pm

  16. Our prayers continue for Mark and the family. Your family is amazing and strong. We also pray for the Doctors that are treating Mark, and all the other children at PICU. I am sure Mark is much happier to be at home and that hopefully will help him gain some strength. We send our love to all of you.

    By Cooki — Feb 5, 2015 8:20pm