Saturday, February 28, 2009

Dates, Anticipation and Anxiety

Through the many months that this blog has covered, it has aimed at capturing not only the events surrounding Evan’s battle with cancer, but also to allow a small window into the emotional and spiritual aspects of a family living with a child battling this terrible disease. There are gaps in this narrative as we have struggled with the implications of certain specific situations and words could not be found to best express anything, let alone the details of the challenge at hand.

Such a gap began again a little over a month ago when Evan concluded his 3rd round of chemotherapy. We shall attempt to fill in that gap.

For seven months from December ’07 to June ’08, we were blind to our son’s condition. As is often preached in business seminars around the world, “You don’t know what you don’t know.” And we didn’t know, and we were to a certain extent blind but searching. It was a stumbling process of snippets of information that were cobbled together using resources to interpret resources and seeking a medical school knowledge without the benefit of having attended medical school.

In July ’08 we faced the decision of committing to life threatening/life altering surgery or committing ourselves to an exhaustive search for answers to questions no parent should ever have to face: What is this tumor? How much time do we have to find out before we potentially risk the life of our child? Will this kill him?

It turns out that an exhaustive search is a limited process when you are dealing with a subject that no one has ever studied, probably because no one ever conceived that Evan’s situation would ever arise. So as we concluded our search a scant 4 months after it began, we determined that there were no other options than to ‘kill’ the tumor before it had any additional chances to develop immediate killer instincts toward our son.

At UNC we were shown the roadmap: Chemo – Surgery – Chemo. It all sounds simple enough in theory, then the rubber meets the road. Chemo is the process of poisoning the body in the hope that the cancer will die before the patient. Patients who ask to keep their last empty bag of chemo drugs for posterity are denied on the basis that poisons of this strength cannot be allowed in the public realm for fear of killing innocent bystanders. The surgical option was held in reserve.

Chemotherapies are target driven and fit into very specific anti-cancer properties of equally specific cancers, knowing that no one knew what Evan’s cancer is, it was unlikely that chemotherapy would work, but in an effort to avoid the next step, it was worth a try.

Evan’s chemotherapy cocktail showed some surprising early promise as the mass changed in shapes and consistency in a short time window, but the MRI just 2 weeks ago showed that the mass had not substantially changed. This was not terrible news; terrible news would have been that the chemotherapy had actually stimulated invasive growth and that things would have been considerably graver.

So when the MRI results came back there was both relief and a distinctly nervous anticipation. 2-3 weeks doesn’t seem like such a long time, until you think that it could be over 1,800,000 seconds. And in each second lies all the thoughts of fear and despair. There is an old Chinese saying, “Anticipation of death is worse than death itself”, but it is not death that is at the core of our thoughts during this time, it is the foreknowledge of pain. Pain not imagined without a point of reference. Evan has been here before; the only difference in this surgery will be the extent and depth of excision. This will necessitate considerably more extensive reconstruction and the overwhelming fear is over any skin graft donor site.

Skin grafting is akin to the modern day equivalent of being skinned alive. The description by plastic surgeons is that it is like a strawberry on a leg or a skinned knee. This does a grave injustice to the true sense of pain that this technique visits on the patient.

With no news from the hospital at 2 weeks from the announced 2-3 weeks to be scheduled, the degree of anxiety increased logarithmically with each passing moment. And then a date was announced, Friday, March 13, 2009. We cannot speak to the level or intensity of the emotions that will continue to flood our hearts, minds and home; but it would be safe to say that there will be a sleepless night or two in the coming fortnight.

As always we thank you from the bottom of our hearts for the continued prayers, kind words and thoughts directed toward all of us and especially Evan as he deals with the internal battles of body and mind in these coming days.

On or Heroes Personal History front, the end of chemotherapy mean that Evan was able to receive his Arrow of Light from Cub Scouts (This is the highest ward that a Cub Scout can receive, and the honor is earned by working through a series of different educational and situational tasks over the course of 2 years study) and was then able to crossover from Cub Scouts to Boy Scouts with his friends. Evan was able to do this all by the slimmest of margins, 5 days, as he needed to be both 10 and have earned his Arrow of Light to achieve this milestone.

For all who have followed the Science Fair Saga: 2009 Edition, Evan’s project has been honored with representing Wake Christian Academy at the State competition in Wilmington, NC on April 23. The goal after surgery will be to be ready to attend and present his project there. Many thanks to all who helped with his project this year, especially Todd Christopher and Chris Rogalski of TPC Auto Wash Supply in Allen Park, MI who at Evan’s design and request manufactured a custom display stand for the computer.

Friday, February 13, 2009

And now the other shoe drops!

After 3 course of chemotherapy, the tumor has not substantially changed in outward dimensions. The surgeon says it feels ‘spongier’ and on Tuesday Evan will have an MRI to determine the internal dimensions. Bottom line is that the chemotherapy is not having the desired effect and that now is the time to operate. Even though this was anticipated, and even though all avenues have been exhausted in researching this mass; it is still a shock to hear ‘wide margin radical excision with axillary node dissection’
In laymans terms this means that the surgeon will take out the mass, all the surrounding tissue with even the remotest of possible involvement, and also take the lymph node pathway(drainage system) to an area where there is no overlying birthmark. As the lymph system is the primary route for metastasis, by taking the lymph pathway to an area where there is no overlying nevus should render a lymph node without melanocytes, one of the calling cards of metastatic melanoma.
Surgery is being coordinated between Evan’s primary onco surgeon, Evan’s pediatric plastic surgeon and the UNC children’s hospital OR suites. Dr. Olilla is an adult melanoma surgical specialist which is why he has been the key member of Evan’s treatment team because of his experience. After this surgery he never wants to see Evan in an operating room again. However, as a surgeon on adults, he does not have OR privileges at Children’s Hospital. Dr. Van Allst is Evan’s Plastic Surgeon; and is tasked with reconstructing what is left after Dr. Olilla is complete with his tasks does have those privileges, so there is some coordination in the works. This is combined with the information that the surgery cannot happen within 4 weeks of chemo, and we have target date of – 2-3 weeks for surgery.
This development must be put into the right perspective. It is often said that minor surgery is what other people have. In this case, even that aphorism is understated. Evan as usual took the news like a champ, his one question behind closed doors was if it would hurt as bad as last February’s surgery. We don’t do lying very well, and the skin graft donor site last year was extremely painful for a couple of days. And the truth is ‘yes’ it will hurt as badly as it did before. Those are some of the toughest words to share with a child.
In a more casual note, Evan has qualified to take his computer to the NCCSA Science Fair in Wilmington in late April, and he should be physically ready to present. Tomorrow is his birthday party to celebrate his 10th birthday on Monday, and part of the festivities tomorrow is the Cub Scout Pack Pinewood Derby. Next week he will be able to receive his Arrow Light which is a very prestigious honor in Cub Scouting and signifies a great deal of work accomplished. On the same night he will crossover to become a Boy Scout at the Blue and Gold banquet. And one of the higher notes of positive events is that chemotherapy is now on hold until further notice. That’s the news of the moment, we’ll report more when there has been a chance to digest the details and we get some concrete scheduling.
PS. Evan’s mom, Lizy, really looks in her element as the new Head Athletic Trainer for the Carolina Railhawks USL1 pro soccer team, but that’s another story.

Monday, February 2, 2009

Update 2/2/09

Evan is having a good day today. For that matter the past 8 days have been good days. We measure the quality of the day based on simple factors: presence of nausea, presence of pain, amount of energy and participation in events/activities outside the home.
Each Monday we take a trip to Evan’s pediatrician and have blood drawn for lab work. The numbers are available the following day and we have been charting the ups and downs of various numbers. While all the numbers are important for ongoing life, the chemo knocks the immune system off line for a couple of days and it takes his body time to replace these key ‘fighter’ cells called neutrophils. These cells are the primary component of a person’s WBCs (White Blood Cell). When these counts get to below 500/micro liter Evan becomes susceptible to infections that would require hospitalization to control. With each passing chemo treatment, Evan’s time in the danger zone increases; first round ~1 day, second round ~5 days, third round – we’ll let you know.
With that information as a backdrop; We are getting ready for his next MRI which will be done on the afternoon of February 17. Evan also has a return visit to the onco-surgeon on February 12, and his next round of chemo is scheduled for February 20. The visit with the onco-surgeon will be to review progress of the chemo and determine the next step in his treatment course. The MRI will provide a more quantitative evaluation of the tumor size and its response to chemo (Has it grown/shrunk and by how much).
On the homefront, things are busy. Evan was able to get his computer to school for initial evaluation for the Science Fair 2009, and he qualified for the next round. He continues to work on it, refining, repairing, improving, and correcting. He also attended Legopalooza at the Moorehead Planetarium at UNC, on the Scouting front he is building his final entry into the Pinewood Derby and getting ready to receive his Arrow of Light and crossover to Boy Scouts.
That’s the news for the day; pictures at 11; and right after that another exciting episode of ‘The Lobby Sherrif’