Parents....you might want to read this first before you share with the kids

Saturday, June 23, 2012


The reason I title this as I did is because this is a lot of technical and VERY scary information.  I am not sure that the kids, the classmates, should have this information without some teaching and much conversation.  I don't want anyone to be exposed to more than they should.  

There are so many details and so many questions and unknowns every time we have a meeting with the oncology team.....it is difficult for me to decide what to share, what is important for you to know, and what is just TOO much information.

You now know that Dillon is MUCH MUCH worse than when first diagnosed even though he had 4 chemo treatments and 28 days of steroids.

We are holding our breath and crossing our fingers for the pathology report on the second lymph node biopsy.  I am actually hoping that it is a different type of cancer....it just feels like if they got it wrong the first time, that would explain the complete failure of the first course of treatment. It feels like if it were something else then the outlook would be better.  I am not sure that is rational, but it is how I feel.

One of the pieces of horrific news that made me shut down completely yesterday was the statistic of survival in kids who have this situation.  I am NOT going to share that.  We all need to assume that it is 100% because we all need to be strong and believe 100% that Dillon and all the other kids in his situation will prevail.  They will all kick this cancer and go on to live full lives.  I cannot acknowledge the absolute gut-wrenching fear, a fear so deep and so brutal that it made me have physical pain yesterday afternoon and evening.  That number, that statistic is leaving my head and we will not speak of it...because it does not matter.  We have our Dillon here with us and we will keep him with us regardless of the statistical data!!!  My dear sweet brother lent me his strong shoulders and his ears last night; he is holding me so well and so lovingly.  He listened, empathized, encouraged, and just helped guide me out of my darkness last night.  Thank you Todd....I will never forget that!!!

Drum roll please......................the tentative plan, assuming that the diagnosis is correct and the second lymph node will reveal the same thing as the first one.  Bear in mind that the details may change if the diagnosis is different (the names of the chemos maybe, the frequency or dosages) but the overall big picture is estimated to look like this.....please keep in mind, I am not using the technical terms and names and jargon because I don't want to misstate or confuse things.

First***Dillon is at extreme risk of respiratory distress.  In other words....he may begin having trouble breathing at any time.  So the goal is to get him through this weekend safely.  IF he were to have trouble they begin with oxygen, not letting him lie down or exert himself, possibly some steroids (which normally melt lymphoma like ice and we know what the last batch did, so that is not promising), and the very very very last resort would be a dose of radiation to his chest to shrink that mass IMMEDIATELY.  But radiation is dangerous and has far-reaching long-term negative repercussions so that is not something they do lightly.

Second***A new chemo has been ordered.  It is not something that is on hand here at the hospital...it is supposed to arrive on Tuesday.  He will receive this chemo (which is 'stronger, more toxic, worse side effects' than the first set) for 5 days in a row.  He will then receive a second new combination chemo for 5 days.  So that is 10 days in a row of crazy high-dose broad-spectrum chemo.  His blood counts will drop fast, he will be quite ill, he will be extremely susceptible to infection, he will need routine blood and platelet transfusions.

Third***11 days of no chemo and during this time he will be given a medication to help his blood counts to recover so he is not in such danger and so he can gain some strength and energy back during these days off.

Fourth***Scans and tests will be repeated to evaluate progress; i.e. obviously the goal is shrinking of mass and lowering of percentage of bone marrow cancer cells.

Assuming that all goes as stated...he will then repeat that 2 more times for a total of 3 courses.

The information I have right now is that we have to be here for the first 21-day cycle....but my brain tells me that I bet we will be here for all 3.....YES you are reading right.  We could be here anywhere from 1 to 3 months.  I cannot explain it, but I am at peace with that.  Maybe it is the fear of having respiratory distress at home and not being able to get him to a hospital fast enough.....maybe it is the fear of the germs and stresses of home....but I am okay.  I know it will be long and tedious and frustrating.  I know that I will need to allow (and Dillon will need to allow) someone else to sleep here sometimes so I can go home to my Luca and my Sean.  But I am mentally and physically prepared for this.  We are setting up our little home. I am getting my exercise DVDs and clothing, more supplies, clothes, some rudimentary food preparation items including blender and possibly a small fridge so I can get back on my green smoothies and be healthy and strong while I tend to my sweet boy. 

Fifth ***The next big BOMB.....Dillon ABSOLUTELY REQUIRES a bone marrow transplant.  It does not matter if we get a new diagnosis (which will undoubtedly be some rare form of cancer) or if the diagnosis remains the same.    This is the second piece of information that turned my world upside down yesterday.  They do not do bone marrow transplants in New Mexico!!!  The default facility is Denver because of proximity but they assure us if there is another location that our insurance would cover we are free to go wherever we would like . There are several schools of thought on this.  Some people want to research and find the hospital with the best statistical outcome or the most recognizable and "famous name."  Some people want to stay as close to home as possible.  Some people are willing to go further from home to be in a city where they may have family support.  We are in the process of figuring out which group we fit into.  There are valid, significant, and important positive and negatives for each scenario and we just have to weed through all of the information and make an educated decision.  The search for a bone marrow match will begin fairly soon but we don't have to "pick" a location for a few weeks.  The bone marrow transplant processes is EXCRUCIATING for the child.  Not the transplant itself, but the preparation, which includes the most insane doses of chemo....it will completely kill every single bone marrow cell in the body.  During that process and for months afterwards the patient is kept in isolation.....one parent can stay but is encouraged to never really leave, as that can bring in germs from the outside.  It is not as intensive as the old "boy in a bubble" but it is pretty darn close...for weeks and weeks....away from home...away from my other 2 favorite boys; Sean and Luca.  This, my friends, sounds UNBEARABLE to me!!!  I know, people do it all the time; it is quite frequently successful with children and adults who not only survive the process but go into remission and become cancer free.

My goals right now:  Stay present with Dillon; don't fixate and worry about what is next; one day at a time.  Enjoy what we have now right here in front of us.  Appreciate the small things and everyday things.  Stay healthy myself...get into better physical condition so I can not only endure this long process but can thrive and come out the other end better than when I went in....just like Big D.

Right now this very minute, I am looking out our window toward the sports complex near UNM (The Pit and Isotopes Park).  There are fireworks!!!!!!  Big, sparkly, colorful----yet silent----fireworks.  Oh, how I love that I am alive and present with my strong courageous boy right here, right now.